Caregiver Revolution : 5 Easy Steps to Enlightened Caregiving 9780895565358, 9780895561480

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Caregiver Revolution 5 Easy Steps to Enlightened Caregiving Grant Abrams & Patricia Elizabeth Drawings by Lin Larsen

Gateways Books and Tapes Nevada City, California

Caregiver Revolution: 5 Easy Steps to Enlightened Caregiving by Patrica Elizabeth and Grant Abrams Cover art by Lil McGill & Lin Larsen Cover design by Marvette Kort Typesetting and layout by Claude Needham Graphic Digitization by Tammis Vaatveit ISBN: 978-0-89556-148-0 Text Copyright © 2011 by Grant Abrams and Patricia Elizabeth Drawings © 2011 by Lin Larsen Ensemble © 2011 by IDHHB, Inc. All Rights Reserved. Printed in the USA. Published May, 2011 by: Gateways Books & Tapes IDHHB, Inc., PO Box 370, Nevada City, CA 95959 Phone: (800) 869-0658 or (530) 271-2239 Fax: (530) 272-0184

Article “Morning Caregiving Rituals Can Save Your Day” on pages 76-77 by Carol O'Dell used by permission of the author. No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopy, recording, or any information storage and retrieval system now known or to be invented, without permission in writing from the publisher, except by a reviewer who wishes to quote brief passages in connection with a review written for inclusion in a magazine, newspaper, online blog, web publication, or broadcast. Library of Congress Cataloging-in-Publication Data Abrams, Grant, 1955Caregiver revolution : 5 easy steps to enlightened caregiving / Grant Abrams & Patricia Elizabeth ; drawings by Lin Larsen. p. cm. Includes bibliographical references. ISBN 978-0-89556-148-0 (alk. paper) 1. Caregivers. 2. Care of the sick. I. Elizabeth, Patricia, 1949- II. Title. RA645.3.A27 2011 362'.0425--dc22 2011004852

Dedication From Grant Abrams: I'd like to dedicate this book to my mother, Emily Abrams, who taught me about gracious living and graceful passing. I'd also like to acknowledge the patience of my wife Judy Gonzalez, her support and valuable feedback. In addition, I want to thank Iven Lourie, Susan Plucknett, Marc Saldana, Star Ananda, Deborah Judith, Laura Mulvihill, Tamara Murray, Se Duggan, Inhocvince, Paul Barry, David Franco, Jim Donald, General Xxaxx & General Nunan and many others who have helped to keep this project moving through the years.

From Patricia Elizabeth: My dedication is to my mother, Juanita Tipton Judson, who has patiently reminded me all these years of what is really important: To be true to oneself and all that one is to the universe and all beings everywhere. Also I am especially grateful for my best buddy and wonderful friend, Richard Hart. And, I would never have entered such a wonderful journey without my special friend and spiritual teacher, Rev. E. J. Gold.

Table of Contents Prologue ................................................................................................................1 Foreword – Why Did It Take 20 Years?...............................................................3 How To Use This Book.........................................................................................5 Introduction – Help Yourself By Helping Others.................................................6 Denial's Not A River ........................................................................................7 The Preliminaries...............................................................................................7 The 5 Easy Steps To Better Caregiving............................................................8 On Being A Caregiver.......................................................................................9 Step 1 – Get Organized And Take Care Of The Basics......................................11 You're Not Alone.............................................................................................11 Learn From The Pros.......................................................................................12 It's All In The Details......................................................................................13 How Things Have Changed.............................................................................14 Beginning Steps...............................................................................................16 Break Tasks Into Manageable Steps................................................................17 Inch By Inch....................................................................................................18 A Few Practical Suggestions...........................................................................19 Get Help...........................................................................................................21 Importance Of Community..............................................................................23 The Caregiver Circle.......................................................................................23 The Internet Community.................................................................................24 Ohhhh, The Paperwork....................................................................................25 Get Organized...That Is The Key.....................................................................26 Self-Efficacy....................................................................................................27 Change Your Approach...................................................................................28 End of Life Caregiving....................................................................................29 Lemons To Lemonade.....................................................................................32 Jim's Story.......................................................................................................33 Step 2 – Manage Your Stress .............................................................................36 Caregiving Causes Stress................................................................................36 Stress Is A Natural Survival Mechanism.........................................................37 Caregiving, Stress and Hard Work..................................................................38 Physical Signs Of Caregiver Stress.................................................................38 Emotional Signs Of Caregiver Stress..............................................................39

You Have To Take Care Of Yourself..............................................................40 A Caregiver's Bill of Rights by Jo Horne........................................................40 Avoiding Caregiver Stress...............................................................................41 Walking And Pedaling....................................................................................42 Some General Guidelines When You Exercise...............................................42 Exercise Ideas..................................................................................................43 An Easy And VERY Effective 15-Minute Exercise Program.........................43 T'ai Chi............................................................................................................45 Simple Stress Relief Massage.........................................................................46 The Relaxation Response................................................................................47 A Simple Visualization Technique..................................................................48 Meditation........................................................................................................49 Mindfulness Is Meditation In Motion..............................................................50 You Have To Make The Time.........................................................................51 The Caregiver Revolution Tool Kit:...........................................................52 Step 3 – Strengthen Your Caregiver Presence....................................................53 How To Use These Practices...........................................................................53 The Attention Gym..........................................................................................54 Attention Has A Friend...................................................................................55 Of Spirit, Breath and Being.............................................................................56 Your Secret Weapon........................................................................................57 Forty Activities To Bring Presence Into Caregiving ..........................................59 Getting Stronger As You Go?.........................................................................85 Step 4 – Help Those In Transition ......................................................................94 Crises Happen..................................................................................................94 The Places Of Change.....................................................................................95 Entering The Transitional Space.....................................................................95 The Crisis Bridge Workshop...........................................................................97 Dying As Transition........................................................................................99 Stages In The Dying Transition.....................................................................100 Spiritual Care.................................................................................................103 Step 5 – Provide Spiritual Care & Support.......................................................105 Present And Accounted For...........................................................................105 Simple Presence.............................................................................................106 How To Be There .........................................................................................107 Your Intention Is What Matters.....................................................................109 Spiritual Reading...........................................................................................109

Ars Moriendi.................................................................................................110 Tibetan Buddhist Teachings..........................................................................111 Facing Death..................................................................................................111 Ten Steps To Doing A Reading ....................................................................112 Exercises And Activities To Help Prepare For Death.......................................116 A Modest Proposal........................................................................................116 The Last Will.................................................................................................117 The Testament (A Last Word).......................................................................118 Exercises For Death Preparation – The Workshop.......................................120 How To Approach This Material..................................................................120 Exercise 1: Telling Another About Your Preparations For Dying................121 Exercise 2: Those Things I Wish For Right Now.........................................125 Exercise 3: Knowing My Roots....................................................................125 Exercise 4: Forgiveness ................................................................................126 Exercise 5: Imagining The Moment Of Death..............................................127 Exercise 6: You Decide What Is A Good Death...........................................128 Planning The End Of Life Celebration..........................................................130 Appendix A: Bibliography................................................................................132 Appendix B: Websites For Caregivers..............................................................139 Appendix C: Supplementary Exercises ............................................................141 Simple And Effective Yoga-based Stretches By Mary Pierangelli...............141 1. Cats And Dogs (Intention: Surrender, Relaxation) ..............................141 1a. Cats And Dogs Seated In Chair (Intention: Surrender, Relaxation) ...142 2. Stretch From Side To Side ...................................................................142 2a. Side Stretch Seated In Chair ...............................................................143 3. Forward Lunge (Intention – To Open The Heart Center) ....................143 3a. Forward Lunge In Chair .....................................................................144 4. Seated Sequence ...................................................................................145 4a. Seated Sequence In Chair ...................................................................145 More About Relaxation ................................................................................146 A Full Relaxation Or Draining Exercise.......................................................147 Facial Relaxation ..........................................................................................148 Diffusion Of Vision ......................................................................................149 Contact Exercise Or Creating The Reading Space........................................149 Appendix D: Spiritual Assessment Tools..........................................................151 FICA..............................................................................................................151 SPIRIT Assessment ......................................................................................152

Taking A Spiritual History .......................................................................152 S — spiritual belief system ......................................................................152 P — personal spirituality ..........................................................................152 I — integration with a spiritual community .............................................152 R — ritualized practices and restrictions .................................................152 I — implications for medical care ............................................................153 T — terminal events planning ..................................................................153 Appendix E: Religious Practices and End of Life Rituals................................154 Catholic:....................................................................................................154 Orthodox Christian:...................................................................................154 Protestant:..................................................................................................154 Church of the Latter-Day Saints (Mormon): ............................................155 Jehovah’s Witnesses:.................................................................................155 Judaism: ....................................................................................................155 Islam:.........................................................................................................156 Hinduism:..................................................................................................156 Buddhism:.................................................................................................156 Native American:......................................................................................157 The Clear Light Prayer..............................................................................157 Appendix F: Questions About Doing Readings................................................158 Appendix G: The Stages of Dying ...................................................................160 A Tibetan View ............................................................................................160 Symptoms Of Transition ..............................................................................160 Signs of Passing – How Imminent Is Death?................................................161 Appendix H: Anecdotes and Personal Accounts Of Reading Experiences ......163 Why Am I Here? by Sean Basham ...........................................................163 Elegy for My Uncle by Iven Lourie..........................................................167 CONTACT (With Non-Phenomenal Voyagers) ......................................168 Transition of My Mother by Deborah Judith............................................169 Se's Experience with his father by Se Duggan .........................................170 Mortuary Experiences by Star Ananda.....................................................171

Caregiver Revolution

Prologue I want to assure you that it is a blessing to sit at the bedside of a dying patient. Dying doesn't have to be a sad and horrible matter. Instead, you can experience many wonderful and loving things. What you learn from dying patients you can pass on to your children and to your neighbors and maybe our world would become a paradise again. I believe now is the time to start. (Kubler-Ross, Life 20)

Okay. Brilliant me. I thought that I had come up with this idea, the concept of the caregiver revolution, just a few years ago...and there it is, many years before, spelled out as plain as day! This book actually has its roots in the Art of Dying Conferences which were held in New York City back in the mid-1990s. Listening to speakers like Ram Dass, Steven Levine, Joan Halifax and Robert Thurman, my views on death and dying were completely transformed and I saw great hope in the hospice movement. I felt optimistic, certain that we could rid our Western culture of its terrible fear of death. The enlightened Tibetan teachings were finally having an impact. E.J. Gold had written the American Book of the Dead which framed these ancient teachings into a western context, and now we were ready to put them to work, out in the field, really helping people to find more conscious death experiences. I continue to strive for this goal. Learning how to do a reading and be present for those who are dying (see Step 5) are vital parts of this book. The relation between reader and voyager (the one who is passing), is the very same as that of caregiver and loved one, and establishing an essential relationship requires that we get rid of stress, learn to focus, and become mindful in our daily activities. Then we can be of real help. We may find ourselves struggling with the day-to-day details, so this book gives the tools to transform that struggle into a labor of love with real, practical outcomes. My co-author, Patricia Elizabeth, has been an inspiration and mentor throughout the years. Patricia has been doing death and dying work for a long time and knew Elisabeth Kubler-Ross well. In some mysterious fashion they both laid the ground work for this book, each in her own way, with constant, and I mean really constant, efforts...traveling the globe, giving workshops and helping people everywhere.

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It is my hope that I have developed the concepts of conscious death and dying and compassionate caregiving in a way that Elisabeth Kubler-Ross would have wanted. I also hope that these pages do justice to the untiring efforts of Patricia Elizabeth. Above all, I hope that this little book will benefit all beings, including millions of hard working clinicians and caregivers all over the world. Grant Abrams

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Foreword – Why Did It Take 20 Years? I joined the early consciousness-raising groups in the '60s and found out something about natural childbirth. Then I taught some of those techniques and followed that up with learning the corresponding techniques for preparation for dying. This took some doing because there wasn't as much available then. Later, we had the good sense to listen to Dr. Elisabeth Kubler-Ross, E.J. Gold, the Venerable Dr. Thich Thien-An and Tarthang Tulku Rinpoche. At that time there was a great concern among the living for the living. Ram Dass' Be Here Now, as if you could be like someplace else. And, fly high – well, if you wanted to hit the stratospheres you had to fly high. Look where the elders of our planet have us sitting today. Long lives, long lines, and maybe not so much long vision or wisdom. I digress. It was after I read E.J. Gold's American Book of the Dead (ABD), that I decided for myself to follow some of the practices outlined in it and do a little advanced work. That was in 1973. I have been an ardent supporter of Gateways Books and Tapes, previously known as IDHHB Books and prior to that as Abandonment Press. Looking back at it now, noticing the synchronization of events – the first public version of the ABD, by And/Or Press, came out at the time of my wedding, November 1974, and I had been one of the proofreaders for that edition. Later, in 1987, the Gateways edition was proofread by my mother, Juanita Judson, and she has been encouraging me in this project ever since. In the spring of 1988, a member of our congregation offered her chronicling of her dying experience as a service to the community. This meant she would allow her thoughts, feelings, experiences to be of use for those training to become caregivers or lay ministers in terminal midwifery. It was her wish to share as much as possible of her journey for the benefit of others. We tentatively called that book, “Claire's Voyage – a Personal Story of Death in Community.” Material in this book draws from and represents a continuation of that manuscript. In 1990, a number of parents of members of the congregation were slowly dying, or died quickly. In each case their caregivers tried to take the bits and pieces of training that they had received, apply it and bring back the results for all of us to share. It worked. We had a great repertoire of caring, diligent, attentive folks who knew how to handle themselves and knew what would be useful for the terminal patient. Page 3

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In 1999, I was ordained as Doctor of Divinity with an emphasis in Terminal Midwifery and Death Counseling. This ordination culminated in the return to field teaching – hospice workers, home healthcare networks, grief groups – both in the U.S. and internationally. We started offering this material in workshop form, over Internet classrooms, and as one-day seminars. Every place we took it folks allowed us the courtesy of creatively adding or subtracting what might be of value to their unique situation. Gradually we came to see this material had an organized coherence and could be applied in the caregiving and the carereceiving arenas. We hope you will find this to be the case, and that you will carry on. There is much development and expansion of preparation for dying to be done. We need to return to our deaths as a natural and normal family tradition in our time and for the future. I know that there is no way this book could have ever come about without all the diligence and observant reminders and considerate joyous poking. I have everyone and everything to thank. Finally – experiencing my cancer in 2006 as a spiritual teacher was a gift that gave me the extra benefit of contemplation, time and serenity. I learned to only do one thing at a time – deliberately and gracefully, if possible. I wish to express how lovely it all has been to be part of this fabulous journey – the creation of a book. I am just glad to have been along for the ride. Patricia Elizabeth

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How To Use This Book This little book is about personal growth, wisdom and sharing. It's based on the premise that you can grow and gain wisdom by helping others at the end of their lives. Then you can share this wisdom with those who are fortunate enough to be with you at the end of your life. This may be friends, family, children, grandchildren or caregivers. They will all benefit from your knowledge. You will be the one who is in balance. This will be an important and fulfilling time for all of you. Though written for all levels of caregivers, this book is well-suited for those who want to take their caregiving work to the next level. The first three chapters present information and exercises that will be helpful to everyone. The last chapters continue with advanced techniques which reveal caregiving in a new light, as a tool which in itself can help caregivers deepen their own spiritual practices. Program directors, supervisors and workshop presenters should feel free to use this material in their clinical in-services. It is practical and conducive to group presentation. Please contact us with any questions. We are happy to share this material. We hope for a great deal...not the least of which is to revolutionize caregiving in the hearts and minds of the dedicated care providers who are doing this valuable work on a daily basis. Grant Abrams and Patricia Elizabeth

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Introduction – Help Yourself By Helping Others We already know that for you, the caregiver, it's “never about me.” Caregivers are selfless...often too selfless. Believe it or not you can take care of yourself while caring for others. You can even use caregiving as a practice in which to include work with larger issues surrounding life and death. Your efforts to become a better caregiver today can help you and those around you tomorrow. By helping your loved one, you are indeed preparing for a better end of life. This is the essence of the caregiver revolution. Caregiving is a precious opportunity to help others, but perhaps you never stop to consider how much it is helping you! By doing this work, you are naturally creating a more positive environment for the end of your own life. You'll be able to handle your death more gracefully, knowledgeably and peacefully. Those around you at that time will benefit from this and will, in turn, pass it on. By making efforts to become a more mindful caregiver today, you are initiating a cycle of benefit that will help future generations.

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Denial's Not A River We live in a time of cultural denial of aging and end of life issues. That's why the Caregiver Revolution is so valuable. It goes right to the heart of the issue. To start, you don't need to change what you're doing, you only need to change your attitude. Acceptance of your caregiving role is the key to this book. Caregiving is usually relegated to being a secondary activity, a burden, and the end of life is seen as a depressing, difficult time. We have found the opposite. Caregiving can be a positive, life-changing experience. The end of life can be a time of spiritual growth and, believe it or not, opportunity.

The Preliminaries You can benefit from caregiving if you're able to: •

accept the reality of your present caregiving situation

•

realize the importance of the work that you're doing

•

make efforts to manage your caregiver stress

•

apply a few simple tools and techniques of mindfulness

It's that simple. You can succeed with it. That's our premise...and our promise.

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A quick clarification is in order. In our title, the word “enlightened” means “well informed” or “free from prejudice or superstition.” We'll teach you a few tricks of the trade. We want you to get down to brass tacks...with intention, presence, and a sense of humor. Knit-browed seriousness is not what we're after here. Does this approach to caregiving make sense to you? We hope so. We hope that you'll join us on a wonderful journey to places that only you can imagine for yourself.

The 5 Easy Steps To Better Caregiving Our methodology is simple. We've broken the revolution into 5 easy steps. We help you to get organized, give you the tools to work with stress and then help you to strengthen your caregiver attention. With this attention you can help others in transition because you know how to stay focused on the direct needs of the present moment during a crisis. In this way you can really be present for those who are dying. Step 1 – Get Organized And Take Care Of The Basics Step 2 – Manage The Stress Associated With Caregiving Step 3 – Strengthen Your Caregiver Presence Step 4 – Help Those In Crisis And Transition Step 5 – Provide Spiritual Care And Support For The Dying The goal of eventually helping others may seem very ambitious to you at this time. It is our sincere hope in writing this book that you become more confident in your ability to handle crises, deal with end of life issues and support others at the time of death. The tools and techniques offered here are time-honored and effective. No religious affiliation, creed, doctrine or belief is implied or necessary. Our view of spirituality is that the expression of God (the creator, Allah, Yahweh, the highest power...whatever you want to call it) is in the details. In the beginning we advise that you stay very detail-oriented. In any situation you can intensify your focus on the specifics of that situation and that will serve as a window to a higher spiritual energy entering your work. Page 8

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On Being A Caregiver The Tale of a Reluctant Caregiver and What She Learned I am not by nature a caregiver. Yet, here I am working three shifts a day, seven days a week. When nurses work a double shift, I feel sorry for them, yet here I am. It is not a job I would have volunteered for, or even accepted on a paid basis. Perhaps because of this, I have had to mount a deep analysis of my situation. I struggle not just to make the best of it, also to make it through (I began that way, and quickly realized that I would crash and burn). I saw that I had to master the situation, make it my own and give meaning to it. What it has come to mean to me is that caring for my dying husband is an incredible opportunity to become a better person. My husband, bed-ridden, brain damaged and dying of cancer has become my greatest gift. Inexplicably, he has placed his total existence in my hands, with complete trust. He has handed over to me the keys of his life. And the responsibility for how he will die. I contemplate how this might be the whole point of our decades together, that I will walk him confidently through the process of dying. He has trusted me with this most important moment of his life. Growth that I may have never known has been forced on me, and it is starting to feel good. I will grow emotionally and I will grow spiritually. And I have him to thank for this. His erratic moods, anger, frustration with me when I move him and cause him pain, become teachings on how to sit with the emotions and pain which arise in me. They are strong and piercing, and afterwards I see the situation, not just hypothetically believing that I can do this, but in reality that I have done it. I realize that unexpected emotions, blind-siding you can be worse than fear. But just as facing a fear gives you the freedom to move through that situation again, I find that I become more receptive to the pain of others, am able to sit and listen to all the stories of others’ loss that a visit to our house inevitably brings out. I have found that just when the caring situation is becoming intolerable, it changes. I have come to believe that the universe takes care of caregivers. It puts us in a very select group. I am not selfless, but I am trying to be and I get to walk with those who truly are. I get to walk beside a person who is about to make the greatest leap of a lifetime. Rather than see this as a moment of helplessness, it becomes wonderful. I am the person who will guide him through, who will reassure him, who will keep the environment around him quiet, so that he can pass in a sacred way. I am not helpless, controlled by his death process; I am an active participant, insuring that it goes well. And this makes me happy.

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I am tired. I would like a break. But I will have that later. Right now I am in the middle of a miracle. Just like at a birth, I will be a solemn witness to a great moment at the other end. It sounds strange, but I am fortunate that my husband has had a long illness. It has given me time to develop compassion and become the person that he will need at his side. So maybe all this suffering has not been in vain. His illness has not been pointless; it has made me a better person, and he has gotten the person he needs. People feel sorry for me. I feel sorry for them. They think my life is hard. I think that I am in an extraordinary moment. They do not see the marvelous things washing over me, the great joy that is welling up. These will have been the toughest years of my life, but have given me so much. Caregivers . . . Aren’t we really the fortunate few? – Marianna Janicelli

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Step 1 – Get Organized And Take Care Of The Basics We are assuming that you, the hero of our story, are caring for someone in your own home, someone who lives nearby, or a distant relative or parent. Your parent or loved one may even be in a nursing facility or hospital. You are involved in your loved one's care, an integral part of the caring circle that surrounds them. In this book we call that person your loved one, care partner, friend and sometimes we even use the word patient. We use he and she interchangeably. Sometimes the word “caree” is used online and you may find it in some of our referenced works.

You're Not Alone Right now more than 50 million people provide care for a chronically ill, disabled, aged family member or friend during any given year. That number is increasing. Over three-quarters of adults living in the community and in need of long-term care depend on family and friends as their only source of help. Approximately 60% of family caregivers are women. The typical family caregiver is a 46-year-old woman caring for her widowed mother who does not live with her. She is married and employed. In addition, 17% of family caregivers are providing 40 hours of care a week or more.

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Keep this picture in your mind: A 50-year old woman who is married and trying to hold down a job. The chances are about one in three that she is also raising a child. Typically, she is helping her mother, a 77-year-old widow who is either living nearby in her own home or with the daughter. Only about six percent of those being cared for are in nursing homes; three-quarters need care due to a long-term physical disability and nearly one in six is suffering from dementia or “confusion.” This daughter has been caring for her mom for an average of four years, and she is spending about 20 hours a week helping with grocery shopping, rides to the doctor, housework, making meals or more intensive assistance such as helping her mother bathe, walk, or even get up from her bed or chair. About one in three caregivers are helping their loved one get dressed or to the bathroom. Among those who work, nearly two-thirds take time off during the workday, 17 percent take a formal leave of absence from their jobs, and 10 percent quit or take early retirement. http://www.nfcacares.org/who_are_family_caregivers/care_giving_statstics.cfm#1 The biggest burden of all, however, is on elderly spouses. They spend more than 30 hours a week caring for loved ones. They are more likely to be doing the difficult work of assisting with activities such as bathing. Yet, they are often doing this on their own, without help from relatives or friends. This situation is obviously fraught with stress, but by learning from others and applying the principles outlined here, you can transform it. You can make it better.

Learn From The Pros As a physical therapist who's been doing this work for many years, I've seen the full gamut of caregiving in all sorts of different settings, from hospitals to nursing facilities to rehab centers to hundreds of homes just like yours. I have observed the truly excellent caregivers; ordinary folks who are taking care of a client, loved one, parent or spouse in a magically competent, skillful and relaxed way. It started when I did a physical therapy internship at a hospital in Brooklyn back in 1989. I discovered that I was learning more from the therapy aide, an elderly gentleman, than from any of the therapists. He treated everyone who came to the therapy gym as if they were special. He always found time for conversation and never

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appeared rushed even though everyone was expertly attended to. There was a magic in what he did and I was intrigued. Several months after this assignment, I worked with a physical therapist, Ted Corbitt, who had the same quality. He was a quiet, unassuming 70 year old gentleman who usually had a slight smile on his face. He was a former Olympic marathon runner who had won many long-distance races in and around New York City and he still ran more than 10 miles to work, from north of the city to East 24th St. in Manhattan. People lined up for Ted's therapy services because he had a masterful touch and an intuitive healing sense. Above all, it was his pleasant demeanor, courtesy and complete focus on his work that I admired. He attended to every detail with precision. When Ted taught an in-service, an hour would be spent going over such things as patient set-up and positioning, draping, covering, body alignment and many other seemingly insignificant particulars. All these details had to be taken care of before we applied our hands to the patient. When Ted worked with a patient, he made her feel that she was the most important person in the world. He gave her his full attention. Though not the least bit obsessive, he made sure that every small thing was done correctly. The small things added up and one couldn't help but notice that it made a huge difference.

It's All In The Details I've run into many special people in care-providing situations throughout the years. All have the same eye for detail. For example, one couple I knew was very active in a singing group that performed in various nursing homes in the Hudson Valley area of New York. The husband fell ill and upon return home from the hospital it didn't seem that he'd ever walk again. He was terribly weak with severe arthritis in his knees. Within three weeks he was getting into his wheelchair, going out to the car on an improvised ramp, pivoting into the passenger seat and going to the sing-alongs. I was absolutely dumbfounded.

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Then I took a closer look. I realized that his wife, who was actually a professional health aide, was incredibly organized in planning his mobility, transfers and activities. She and her husband focused on one goal – to get back to the sing-alongs, so everything was oriented to this, including the arrangement of the home, their daily schedule and his therapy sessions. In his physical therapy sessions, everything we did had a practical orientation, to get out of the house and into the car. This manifested in an amazing recovery. The fact that he was a tough old bird didn't hurt matters either. What I most admired about this couple was their attitude. They had the details organized and their goals were specific. If something unexpected came up, they didn't get flustered, they just dealt with it. They were always upbeat, optimistic and they kept their sense of humor. This undefinable quality that combines caring, focus, and humor is the caregiver's secret weapon. When I leave a place where I've admired a clinician or where the caregiving formula is working particularly well, I go over the situation in my mind and try to figure out exactly what made it work. If I really had to summarize it, I would say it as follows: The best caregivers are those who have acquired some experience yet remain open to experimenting and learning new tricks of the trade. They are organized, do the basic things correctly, have well-defined goals, and don't stress about the big picture. They can laugh at themselves and accept their mistakes. Does this formulation sound surprising, spiritual, or earth shattering? Of course not! But I can't tell you how many people expect competent caring to be an easy task with no skills, learning, or mistakes involved. They think that they should know exactly what to do when their parent or spouse comes home sick from the hospital. This is clearly not the case, as many of us have come to find out.

How Things Have Changed We may wonder why it's not like the old times when older family members could simply return from the hospital and fit right back into the home. Why has caregiving gotten so difficult?

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1. Hospitals are discharging people quicker and sicker than ever before. Complicated follow-up regimens and medical or medicinal procedures are often involved and discharge instruction is limited. 2. Family dynamics have gotten more complicated over the past few years. Women are working longer hours and there are more non-traditional and extended families. The “primary caregiver” may include several people. They have to communicate extensively and arrange schedules to coordinate care. 3. The “independence trap” makes it hard for caregivers to ask for help. “I can do it,” and “I don't need any help,” are phrases that professionals often hear from soon-to-be-beleaguered spouses and families. The independence trap comes out of a belief system in the western world which equates maturity and strength of character with going it alone. (Witrogen Mcleod 20) 4. Our economic system can no longer support the burgeoning aging population. This puts more financial pressure on the spouses to continue working and gives them less money for medications and supplemental care (which, by the way, are getting more expensive). 5. Chronic long-term illness has become more prevalent over the past 20 years and dying has become a slower, more gradual, process. Much longer nearcritical care periods are becoming increasingly common with repeated admissions to the hospital. 6. Caregiving quickly turns into a matter of sheer endurance. After a few weeks, little things that seemed doable in the short term, pile up and become unmanageable. People don't know which way to turn and get overwhelmed. This, in turn, sets them back further...it can be a downward spiral.

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Beginning Steps We have to face the fact that the caregiving world is much more complex than it was just 10 years ago and that caregiving will be a challenge! Many excellent books have been written to help the caregiver with the initial preparations in the home and you can find them listed in our bibliography. We want to mention a few things that you should do right at the very beginning of your caregiving experience. These things are so important that they can't wait another minute: •

Educate yourself about your loved one's disease.

•

Identify unrealistic expectations, especially your own.

•

Seek and accept support.

•

Identify what you still have rather than what is lost.

•

Let go of what cannot be changed. (Schmall 5)

What do you know about the specifics of your loved one's condition? Have you done some research, gone to the library or talked to your doctor? How do you expect things to be in a week, a month, a year? Is this realistic in terms of what you have found in your research? What will you do if things don't turn out the way you expect them to? Who can help you? Page 16

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Start organizing your care circle, your friends and resources in the community. This is important! Focus on the positive components of the situation and work with what you've got. Now, in case you thought that wasn't enough, here's another list of some initial things to do, from Today's Caregiver Magazine: Keep track of medications, throw away old medicines from the medicine cabinet, set up a calendar of appointments, keep copies of medical records, attend to filling out advance directive and will, organize your financial records and have a home, life and long-term insurance analysis done. (Barg 31)

You thought this would be easy? Thought you could do it alone? Caregiving is a skill and there are many complicated factors involved. Competent caregiving can be learned if it is approached in an organized way, as a skill with a well-defined learning curve. You'll need patience. Consider: every clinical person you've been dealing with in the hospital has at least 2 years training. Do you think you can learn all of their jobs overnight? Probably not, but you can learn the basics in a short time. I know this because I have seen the folks just like you who have mastered the fundamentals and become excellent caregivers. You'll need to learn some new skills – caregiving skills. And remember, as difficult as it might be, this is also an opportunity to spend some time together in a meaningful way that holds possibilities for both you and your care partner. You'll get better with practice. You may even start to enjoy it. It's a proven fact that previous exposure to caregiving reduces caregiver stress; i.e., the more you work at it, the better and the more relaxed you'll get.

Break Tasks Into Manageable Steps Caring for your loved one may seem completely overwhelming at this point. It's probably involving more time and energy than you would have ever imagined. Here's an exercise to help you get it under control: Tonight, for just five minutes, sit down with a cup of tea and write down the details of a typical day's care, listing essential tasks only. Break the day into sections. Eventually Page 17

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you'll break these sections into modules and then even smaller tasks. You only have a short time to work on this tonight so don't get too detailed. After five minutes, put the list away and work on it again tomorrow...for five minutes only. Some of the activities that might come up in your analysis are: washing up in the bed, getting out of bed, getting to the bathroom, using the commode, grooming, bathing, dressing, preparing breakfast, taking morning medications, cleaning up the bed, making the bed, situating your loved one for the next few hours, preparing for nursing or therapy visits, making appointments, turning on The Price is Right, preparing lunch, taking mid-day meds, toileting, transferring back to bed for a nap...etc., etc., etc. Can you see the point of this? You are getting organized. Keep working on your list...give it a solid week of five minutes a day. Just the act of listing will help you discover more and more details and more solutions to the scheduling of different tasks.

Inch By Inch... As you do this exercise, don't be surprised if your days become a tad more manageable. As a good friend used to say, when people were starting to walk again in physical therapy, “Inch by inch, it's a cinch.” Start by standing up with the walker, march in place by the bed, walk two feet, three feet, then five feet...etc. It adds up. Keep this step-by-step progression in mind for every activity. In the case of progressing mobility, for example; if your loved one can't get out of the bed, start by simply moving his legs toward the edge of the bed. Then go back to the regular lying position. Later in the day go a bit further, maybe dangle one leg over the side. Then, next session, dangle both. Next, help your loved one to sit up on the side of the bed, with support...maybe some pillows behind him, then with just supervision and maybe a table in front. Then, with two people helping alongside, stand with walker. If this isn't possible, try to pivot into a chair placed alongside the bed (some people won't be able to stand, but still can bear enough weight to pivot). See how it goes? Break any activity into steps. It will make it much easier. It does take patience. In fact, patience is a very real and practical tool that you are developing here. If you view patience as a tool that you are learning to work with more skillfully, it will make your caregiving experience more rewarding. Page 18

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You will benefit more and more from the exercises in this book as you establish some degree of patience toward others and yourself. Take your time. Think of caregiving as a labor of love, and remember...it does get easier. If you need practical help with organizing the activities of the day, we heartily recommend The Complete Eldercare Planner. This, or any number of online resources (of which the excellent publication, The Family Caregiver Handbook, is a shining example) will give you a system to help you to organize and navigate through the first few weeks in setting up the caregiving environment. (http://www.dshs.wa.gov/pdf/Publications/22-277.pdf) Just to help you get started, here are a few things you can do to make your home more caregiver-friendly. Try to implement some of these, and at the same time, we suggest that you start making arrangements to get some professional services in your home.

A Few Practical Suggestions As a home care physical therapist, I would recommend that you set up the following modifications before or shortly after your loved one comes home from the hospital or from rehab: 1. Two hand railings on stairs. I wouldn't put this first if it wasn't the most important. It may take some creative construction, especially outdoors, but having two railings will really pay off in the end. Page 19

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2. Rolling walker with plastic caps or tennis balls on the back legs. Or, a 4wheeled walker with brakes and seat if it fits through the doorways of your home. The 4-wheeled walkers are getting more popular because they are better for outside use. Your loved one can walk until he gets tired and then he has a ready-seat at his disposal. 3. Transfer tub bench (she can sit on the outside of the tub and slide in) and hand-held shower attachment. 4. Grab bars in the tub or shower and by the toilet, if no commode is available. 5. Three-in-one commode over the toilet by day and for use by the bedside at night. 6. A small bed rail that attaches to the bed frame can make getting in and out of the bed much easier. A small stool by the bed can also help getting legs in and out of the bed. 7. Clear up clutter on the floor, near doorways, in bathrooms and take up the throw rugs! 8. Acquire grabbers, sock donners, shoehorns and all manner of devices to help get dressed. These are usually recommended by the occupational therapist. Often these are sold as kits. Buy one, they're worth it. 9. A wheelchair can come in handy and make the home situation much safer. You can rent them by the month. Make sure the legs go up and down, are removable and are adjusted to proper leg length by the therapist or technician. Make sure that you have a cushion. Every wheelchair that is delivered should have at least a basic cushion as Medicare does pay for them. Your doctor simply has to include the word “cushion” on his prescription for the chair. 10. Power-elevating recliner chairs, which tilt up and forward to help with standing and recline for comfort during the day (or night). These are becoming more and more affordable and are one of the best additions to a home. They give your loved one more independence, comfort and better posture. Highly recommended!

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Get Help As we said before, now is probably a good time to get some professional help in. Here's a list of some of the different care possibilities available: •

Home Health Agencies

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Live-in Nurse

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Homemaker

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Friendly Visitor

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Home Meals

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Hospice in Home

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Adult Day Care Respite

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Social Adult Day Care

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Alzheimer's Day Care

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Adult Day Health – Medical

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Adult Day Treatment – Psychological

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Out of Home Respite Overnight

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Short Term Respite

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Senior Centers

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Case Management Services

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Placement in 24-Hour Care

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Residential

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Assisted Living

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Skilled Nursing Facilities (Nursing Homes)

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Hospice Facility (Olshevski 120) Page 21

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Community agencies which can help with every aspect of caregiving are: Senior Centers, Churches, Community Mental Health, Universities and Colleges (for counselors), Family Meetings, Support Groups and Case Management Services, County Offices of the Aging. (Olshevski 133)

Get nurses, aides and therapists into your home. If services haven't already been ordered, have your doctor contact a local home care agency for nursing, physical and occupational therapy evaluations and a home health aide. If your doctor won't do this, find one who will! For Medicare to pay, the one caveat is that your loved one must be essentially home-bound, that is, it must take “significant and taxing” effort to get out of the house...and he definitely can't be driving. Try to get as much knowledge and information from the professionals as you can. Watch the nurses and other clinicians, and ask questions about the medications and learn anything and everything about the details of the care they are providing. Don't be afraid to do this! They will appreciate your interest. Learn the mobility and transfer techniques, the details of bathing and even making the bed. Learn the simple step-by-step details. The clinicians are the pros. They take their jobs seriously and you can save a great deal of time and effort if you are willing to learn from them. Remember, every minute you save doing the basic things will give you an extra minute to yourself. The home care clinicians can really help you to get organized. You will learn that if you approach this as a pro, you will have a lot less stress. Often in the home healthcare business, we get families who refuse home services for a variety of reasons, most often the “pride in independence factor” mentioned above – a caregiver who feels that she can “do it all herself.” Don't refuse help, in fact, get as much as you can. Even if you don't think you need it, accept the help! When the aide is visiting, you can even make some time for yourself. Go out for a walk. Go into town. Do something for yourself. The medical professionals will let you know when you no longer qualify for Medicare or insurance services. Let them initiate the discharge. If there is any aspect of care you aren't confident with, go over it with them until you are satisfied.

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Importance Of Community You should never feel that you're in this alone. The leading cause of caregiver stress is actually the feeling of isolation. When you feel alone, it seems almost impossible to carry on. The truth is that you're never alone, not at all. Remember, 50 million of you are out there! So it's important that you get out of the house, interact with your peers, and get community behind you, really working for you. Family, friends, community resources, government agencies, call on everyone and anyone you can think of. Go on the Internet! Much more help is available than you would imagine.

The Caregiver Circle An interesting and enriching way to view the support community is as a circle that surrounds your loved one. Rather than a hierarchy with your loved one somewhere at the bottom of a line of doctors, clinicians and professionals, view him in the center of a circle with all those clinicians around him. Included in the circle are your family, friends and minister, priest or rabbi. Now expand the circle to include your grocer, baker, milkman, dry cleaner, the ladies at the senior center, all the members of your church, your card group, neighbors...the entire support system that makes up the community that surrounds you. This viewpoint allows you to open up the possibilities of those who can assist you, because they are part of the circle helping your loved one. You are not asking for assistance, you are helping the care circle around your loved one to manifest. (Cason 7) Page 23

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Organize your caregiver support team. Make a list of names and phone numbers of friends and neighbors you can count on. Keep the list with you at all times. Include government numbers and add a few government resources out of the phone book every week. Compile your list, make it a daily effort and then share it with others who are just starting to be caregivers. You are becoming a resource! You are becoming a mobilizing force! You are educating others. Not everyone is a natural caregiver, but everyone can help in some way. If someone finds hands-on caregiving work too taxing, let her do the shopping, take care of the finances or do the yard work. Finding a job for everyone is a big step in making the experience work for you. The more you can make your caregiving experience a group effort, the better. Believe me, people want to help. You just have to find the right way for them to contribute. They will be energized and learn from your efforts.

The Internet Community You may be aware that the Internet offers incredible resources. Still, I would bet that you don't realize how rich and supportive the on-line caregiver community is. I have been astounded at the resources, the creativity and the enthusiasm of the caregiver websites. You can go online to share your experiences, find facilities, products, resources, and get support. You can chat with others whenever you have the time, right in the convenience of your own home...and the benefits are as real as “in person.” Caregivers seek out the answers (online) to the difficult questions regarding healthcare alternatives, legal issues and trying to find a connection with others in similar situations to get emotional and spiritual support. More important, they have discovered a way to find some refuge and bond with other caregivers. (Barg 22)

With attention to good manners and web protocol, (always let others finish what they are saying) a chat room can be a very enriching experience. You can make great connections, share experiences, and find answers to your questions.

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Most of the administrators of the really good caregiving websites have been caregivers themselves. They understand what taking care of someone is like. They created their sites to help others. This quality of helpfulness is what you should look for in a good website or chat room. It should have a “non-profit” feeling. If it has a corporate feel or a lot of advertising, then you should probably move on. There are so many good websites out there; there's no need to stay at a proprietary site. We have included a list of excellent, reliable sites in our appendix. Caregiving.com has terrific communitybased activities. Our website, www.thecaregiverwebsite.com has links to many other caregiver sites and a full listing of exercises and techniques to help beat stress and strengthen your caregiver presence. Accessing forms, paperwork and getting help with legal issues are some other effective uses of the Internet.

Ohhhh, The Paperwork Unfortunately everyone has to pay attention to the medical miasma paperwork monster. You have to take care of it so that you and your loved one don't get distracted by it. Tame it right from the start and it won't become ferocious. The most important forms that you need to start with are listed below. Do a little bit every day. We won't go into detail about these forms. Several books in our appendix, including Last Rights by Pat Cochran, or the Instant Caregiver Kit have forms that you can copy right out of the book. For now you should look to include most of the following in your paperwork arsenal: •

Power Of Attorney

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Durable POA – remains in effect after individual is no longer competent

•

Durable POA for Health Care

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Living Will

•

Living Trust – hold title to assets

•

Last Will and Testament

Don't stress over this list. Take small steps to get it organized. Page 25

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Of much importance lately has been the topic of living wills. A Living Will is a legal document used to specify the health care you would like to receive under certain circumstances. A Living Will does not do the same thing as a Last Will and Testament and does not take its place. Complete estate plans include both a Will and a Living Will. Confusion is created by using the word “Will” in “Living Will,” and for that reason many states now use the term “Health Care Directive” or “Advanced Health Care Directive” as more descriptive terms to use for this document. A very good website that can help you to get started with this is: www.agingwithdignity.org. Get help from your family, your lawyer or a government agency – the office for the aging. If you are in an urban area and can access the services of an elder law attorney, this is your best bet. What is elder law? It addresses the needs, wants, goals and fears of people over the age of 65. Among other things, it involves the Power of Attorney, Health Care Proxy, Living Will, Last Will and Testament and Health Care Trust. Most lawyers have a working knowledge of these documents, and of course, normal legal issues apply to older people, but elder law attorneys bring a more detailed understanding of how all these documents fit together in planning for the client's gradual loss of ability. They also know details of Medicare and Medicaid coverage and how these relate to nursing homes and long-term care.

Get Organized...That Is The Key Let's backtrack a moment and reiterate one fact: hoping for a pie-in-the-sky solution to a pressing problem is the leading cause of caregiver stress. So get right down to the real nitty gritty. Deal with problems in an organized fashion. Take care of details. Solve small problems when they arise. Don't leave things hanging. This will get you started on the right track. When you notice a problem developing, use it as a reminder, “What can I do to solve this now in an efficient way?” You will soon see how well this approach works. Most things are a snap. You will notice, however, that some problems defy quick solution. So, make two categories: the problems that you can solve right now and those that Page 26

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don't have an immediate solution. You'll deal with them later. When a solution is really needed, it will arise. There is no reason to worry about it. Solutions don't come through worry. Put a problem on the back burner for a day or so...keep active in solving other, smaller, things, and the solution will come to you because the efforts you've been making on other fronts will open up avenues for its resolution.

Self-Efficacy There's a method to this madness. It's called self-efficacy. By tackling small problems and successfully solving them, you get a feeling of some power and the confidence to solve bigger problems. Success breeds success. It's been proven that when you believe that you're able to control small events in your life, and get more confident in your ability to make things happen, you enjoy more success. (KabatZinn 201) It's logical why this works. The more confident you are, the more you are willing to try different things, and this opens up your ability to apply more creative solutions to what seemed to be insurmountable situations. The more you succeed, the more you are willing to try. You get more creative. Your efforts actually make things happen. “Believe in yourself” is a very practical saying. You'll naturally have more success when you do. Self-efficacy (also) increases when you have experiences of succeeding at something you feel is important. (Kabat-Zinn 202) Page 27

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If you feel that what you're doing is important, then you'll be more likely to experiment with other things in the future. Your self-efficacy can also increase if you are inspired by the examples of what other people are able to do. (Kabat-Zinn 203)

It's good to have folks whom you admire – role models – and as a practice, it will make you more successful at what you do!

Change Your Approach Things won't magically take care of themselves when your loved one comes home from the hospital. You work hard and problems get solved because of that. You gain confidence from your efforts. You keep your eye on the small problems and watch the bigger challenges fall into place more readily. The next thing you can look for is acceptance...from yourself. You won't do very well if you deny what's happening to you but, you can gain much benefit if you accept it. If you accept the reality of your caregiving situation, it allows you to see how important it is that you are doing this work and it also allows you to put your full effort and undivided attention into it. When you see how vital this work is, you start the revolution – the cycle of benefit of this work. You can help a lot of people! According to Dr. Ira Byock, the caregiving work that you're doing today will be known as the signature of our age. Forget computers, Wall Street, wars, spaceexploration. It really is the work you are doing, the person-to-person work of caring for loved ones, that is the defining challenge of modern life. Caregiving work is an honorable challenge, worthy of the highest recognition. Even though I'm not particularly religious, every time I go into our local Catholic hospital, I can't help but stop to reflect on the words of St. Benedict mounted over the entrance: The care of the sick must rank above and before all else so that they may truly be served as Christ. – St. Benedict

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The media will never recognize caregiving because it's not glamorous. In fact, it can be downright unglamorous. Can you imagine commercials featuring you and your loved one in the midst of the daily rigamarole? You gotta laugh. If at some point you feel the urge to buckle down and approach your caregiving work with a grim sense of determination, you can always step back, take a deep breath, and think of something remarkably goofy that has happened to you in the last 24 hours! Humor, acceptance and a dash of humility make good partners in all of the care-related professions.

End of Life Caregiving Sooner or later the harder questions start to manifest in a caregiving situation. How do you stay compassionate when your spouse is ill, when times are at their worst or when your loved one is cranky, demanding and irritable? When the person you are taking care of is a completely different person than the one you've loved for many years, how can you cope? When it's the middle of the night and you're at the end of your rope, what can you do? When you enter the room and a full-blown crisis is happening, how can you help to resolve it? How can you possibly help someone who is dying? Answering these questions is what this book is all about. Before we go on, we want to clarify one small thing. Experienced and compassionate caregivers don't differentiate between terminal caregiving, end of life caregiving, regular caregiving, acute care caregiving or chronic care. There simply is no difference. Caregiving is caregiving. A person is a person. People who are sick or dying want to be treated just the same as everyone else. This is a very important point! The dying would like us to relate to them as people who are living, compassionately accepting their vulnerability and suffering while seeing them as a whole. We can do this by having thoroughly prepared for our own death, and training in meditation which enables us to connect with the innermost essence of our being. Then when we are at the side of the dying we will have the assured knowledge that they are more than their suffering, more than is temporarily manifesting on the surface – confusion, anger, denial, dementia and so on. We can recognize the inherent goodness within each person, no matter how clouded over it may seem to be at the moment. (Longaker xv)

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Keeping this in mind you may now be able to realize how working as a caregiver gives you the opportunity to face your own end of life issues. You can also get hospice services into your home to help you at this time. People sometimes refuse hospice services for the same reason that they refuse home services, because the thought of it offends their sense of independence. Or they may think that hospice means a “death warrant.” Of course, this is a totally false construction. Hospice means living fully to the end. The fear, the misinterpretations, are understandable, however, because we do live in a time of tremendous cultural taboos of the dying process. Margaret Coberly calls this the time of “death denial” in Western healthcare. She tells the story of a friend, very close to death after a long bout with cancer, whom Margaret was caring for at home. Margaret went out one night and the friend's son, who was filling in for her, called the EMS in a panic when the patient appeared to stop breathing. Upon rushing back to the house, Margaret found EMS, firemen and policemen who grew incensed when Margaret and son decided that her friend would not go back to the hospital. She had come home to die. The paraprofessionals couldn't believe that this poor frail woman wouldn't want to return to the “safety of the hospital.” Indeed, Margaret even started to question her own motives...had they made the right decision? Her friend died peacefully at home a few days later with family and friends gathered around her. It was indeed the right decision. To Margaret, it was also a revelation of how powerful and all-pervasive death denial is. In the end, it hurts us all. For if we are truly unable to find the courage to face death with openness, how are we to be truly compassionate with our loved ones when they are dying? Fear won't allow it. (Coberly 11)

We must overcome death denial if we are to successfully meet the emotional and spiritual needs of those who depend on us for help when their lives are ending. So here is a “change of viewpoint” alert. Hospice is not about dying. It is about living fully to the end. People can experience tremendous growth in the final days of their lives and experience a peaceful death. Hospice can help make this happen.

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Hospice provides superior care, no question about it. If you accept hospice, you will probably be so grateful for the care you receive that you will become an advocate. I'm talking from years of observation and from experience with my own family. If your doctor or the care provider recommend it, get hospice care into your home...it can be a saving grace. A terminal illness doesn't belong only to the one who is sick – it affects family members, friends, neighbors, coworkers. Not unlike a still pond disturbed by a falling stone, an impending death sends ripples through all the relationships in the life of the dying. Each person has his or her own set of issues, fears and questions. Is it possible to find anything positive in this devastating event? Can this remaining time be used to share treasured moments of living, while coping with the many losses death brings? Rather than dying on a continuum, can this person be helped to live until he or she dies? Can this be a time of personal growth for all involved? Yes. (Callanan 13)

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Lemons To Lemonade We mentioned above that a sense of humor is the caregiver's best friend. This is for a variety of reasons. In life we may learn that it's not so much what happens to us that's important, but how we relate to it. Lemons to lemonade, humor gives us perspective. By providing a focus for your energy (and that of your loved one) outside the day-today caregiving situation, humor can help diffuse stressful events and give perspective. Laughter releases tension. It is acceptance of our weakness and frustration that signals freedom. A humorous approach can reveal new insights and solutions to problems. It promotes a left to right brain switch, thereby opening up creativity and insight. (Klein 9) In her best selling book, Pathfinders, Gail Sheehy discovered that the ability to see humor in a situation was one of the four coping devices that people who overcome life's crises used as a protection against change and uncertainty. (The other three coping devices were: more work, dependence on friends and prayer). With remarkable

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consistency, she reports, people with high senses of well-being got through rough passages by seeing humor in difficult situations. (Klein 7). Crying can also help. Tears water the heart so that love can grow. I welcome the tenderness of tears. (Samples 115)

A good cry has many of the same effects as a good belly laugh. Sometimes crying is all that we can do, all that's necessary. It's an authentic form of expression and tells the deepest truth. Crying helps us immensely. By forgetting how to cry we have lost a great part of our emotional heritage. Just be gently aware, however, that prolonged, continued crying, doesn't have the same benefit as laughter. It can be debilitating, eventually wearing us down. Too much crying can take us inward to isolation, whereas laughter focuses us outward. Laughing expands the vision. (Klein 21)

Jim's Story My story started two years ago when my parents came out to see the house I was building and hoping to sell. They had just moved into an assisted living complex after being in an apartment for a couple of years. Both of these moves were under coercion, and came too late for my Mom. This is when I noticed that they shared a sensibility with teenagers, in that they acted like they knew what they were doing, but knew they didn't. This false independence thing is a desperate time, hence “teenagers in reverse.” My sister had been the prime helper, and she took an emotional beating. Nobody likes to be told what to do! She was also very angry at me because I lived about a 10-hour drive away. So we were having fun. When my parents came out to visit, I was gifted with a plan by working with our “needs.” My Mom needed 24-hour care, my Dad needed help looking after her, we needed money to help through the time of not being able to sell our house (because America needed to take its economy to the toilet and we Canadians just tagged along). Because my wife, Mary, is a nurse and I only worked two days a week, having finished the house and thereby I had lots of time and welcomed a new vocation; it worked as a doable plan. My 18-year-old son who thought he was a prince, being the only child, needed a new position, bottom of the food chain. The climate in our home was a bit Page 33

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stormy so I figured a change of the cast and locale could help us all. I got my Mom by herself and gave her the plan and said, “You decide.” She had the most at stake, and giving her the choice was the center pin of the whole deal. She said “Yes.” My sister was shocked by the idea of our parents moving out to our place and felt blindsided by it. She was also chagrined with the idea that our parents would be paying me what they had paid for the assisted living place. This was another center pin, because they were paying their way, and I was unable to become the full-time caregiver without my folks providing some income. My Dad was angry being moved for the third time in about five years. When they arrived my Mom was thrilled because the fear of going to a nursing home and being alone was removed. My Dad complained every morning for a week until my Mom quietly leaned over and suggested, “Go back then!” From then on, he was great, just another guy on the team needing to look after Mom. Now I gave my speech. I began with the concept that I had always been the least bossy one in my family, but by the nature of the reality at hand, it was imperative that I become the go-to guy. I was the guy on duty day and night so I would know how they were doing. I presented the idea that their main job was, instead of hiding what they couldn't do, was to tell me so I could help. My Mom and I had to handle the freaky idea that I needed to help her dress and the bathroom deal; incredible realignment, but critical to her being able to stay. Also they had become fearful, what with the loss of control, so we had to get a bit of teasing back in the deal or I wouldn't be able to survive. Once they accepted the challenges, we entered the best time of my life. The fact that my mom, Hope, is the best person I have ever met, didn't hurt. I told them they were both so damn cute, and it made it way easier. I thus formulated the concept that being cute at every stage of the game upped your chances of being the last one thrown overboard. I called them “my kids,” and they liked it because it was kind of true and again it released them from the need to do things. It was my gain not their loss. I got to help. It was never my responsibility to keep them alive, it was to give us all a good time. I found that some professional care-givers took on more than their share of the tragedy of getting old and dying. In fact most people acted like it was so sad to be nearing the abyss, poor them. This is where I realize that having been taught to do readings for the departed, it was not such an angst-ridden thing after all, especially compared to living. My Mom lasted just under a year with us and then she went into a sweet little hospital in Nelson, B.C. I stayed with her the last two nights of her life. The morning she died, I had just gone out for a coffee and a nice warm croissant. I was just biting down when she

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opened her eyes and saw my prize. She loved good food and her eyes just bore right through me. I begged, “Mom, you know I'm a diabetic and can't share my food!” This time her eyes called me “You little prick,” and that was our last moment. A couple of hours later, I began readings while Mary protected me from the hospital stuff. It took about an hour and it was easily the most important thing I have ever done; just a great try to help my Mom. The ABD readings continued at dawn and dusk for 49 days. It was never sad for me because she had a great run, but pain ain't pretty. My Dad has been great too, I think because he helped so much that there was no “I wish I would've.” Throughout the whole thing Mary was there for the medical intervention and was an angel. I told her that I was dying too, so lay some angel on me. Sandy, the young prince, has learned the joy of helping the most needy one at the table. My suggestion for anybody in the same situation is to struggle to find a way to fit them in your life and then things will arrange in an essential way. Under the same roof is easier, and remember, no martyrdom. Things will arrange. Bless you for asking me to do this. It has helped me remember. (Jim Donald)

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Step 2 – Manage Your Stress Now that you've accepted your caregiver role, organized your care circle, realized the importance of humor and changed your entire home, everything is perfect, right? Of course not!

Caregiving Causes Stress Lets face it, you're just getting started and you're going to have stress. The reasons are well-documented. As we've already seen, the healthcare system is putting more pressure on families than ever before. More people are chronically ill and hospitals are discharging people who are sicker. The “quicker and sicker” discharge phenomenon has grown since the late 1980s when Medicare (the Prospective Payment System) encouraged hospitals to maximize profit by discharging people faster. As a personal family caregiver, you know that you are getting less and less help from the healthcare system and have to spend more of your own time and effort figuring out medications, scheduling appointments and tending to the basic needs of your loved one. In addition, people are living longer and life stretches on for those who are chronically ill. You know this because you, as a caregiver, are in the midst of it. A situation that you might have thought was temporary can unexpectedly turn into a long-term commitment. Page 36

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Think of Elder Care as encompassing two distinct types of stressors. First is the stress associated with a crisis situation: Your elder is diagnosed as having a catastrophic illness or suffers a sudden, disabling accident. The stress of coping with such a crisis is undeniable, but at least you know what caused the stress, and just about everyone understands why the situation might cause you to shut down on your other responsibilities while you leap in to handle the problem. Long-term or chronic stress is the second type of stressor often associated with elder care, and is far more insidious than crisis stress. There is no one triggering event to point to as its cause; rather, it is the cumulative result of any number of small, seemingly mundane pressures. (Ademac 80)

Stress Is A Natural Survival Mechanism Studies have shown that caregiving dramatically increases the amount of stress that you take on. Most people don't realize that there are straightforward, well-understood physiological reasons behind the stress. We think of stress as something in our heads, like worry, but it's not. Stress is not in your mind, it's in your muscles, and once you realize this you can get rid of, or lessen it, quite easily. When you confront a new challenge, a stressor, your body wants to “fight or take flight.” This “fight or flight” mechanism is deeply programmed into the autonomic nervous system and is a basic survival mechanism. Your cardiovascular system snaps into high alert in the fight or flight response...it goes something like this: It all starts with a perception, real or imagined, of danger. The hypothalamus tells the pituitary to tell the adrenals to release adrenaline and glucocorticoids into the bloodstream. The full sympathetic nervous system response accelerates the heart rate and respiration, constricts the veins and arteries and makes the blood thick with fatty acids and glycogen. (Jahnke 42)

The cumulative physiological effect of this stress response is harmful in the long run, building up cardiovascular conditions that lead to stroke and heart disease. You can manage this tension through physical exercise, breathing, simple pressure point acupressure and relaxation. In the process you will be much healthier...and a better caregiver. The exercise connection to stress reduction has been proven in numerous studies, and exercise has even been shown to make one more resistant to stress. Page 37

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In other words, it appears that individuals who exercise regularly are better able to deal with life's daily hassles. (Leith 46)

Many good books are available about stress reduction programs complete with charts and ideas, lists of activities and ways to make it all fun. We highly recommend the book Active Living Every Day by Steven Blair. Increase your daily activity level and have fun while you're doing it!

Caregiving, Stress and Hard Work Caregiving is not stressful because it is hard work. As we all know, hard work never hurt anyone. It is the perception of the work that is important. It's your perspective on the situation and your perception of your role in it that's important. If you have unreal expectations of yourself, if you are denying help or are expecting pie-in-the-sky solutions to your problems, then you are at great risk for developing unmanageable caregiver stress. The following list gives you some things to look for in evaluating your stress level.

Physical Signs Of Caregiver Stress •

Disturbed sleep

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Back, shoulder or neck pain, muscle tension

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Headaches

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Stomach/digestive problems (upset or acid stomach, cramps, heartburn, gas, irritable bowel syndrome, constipation, diarrhea)

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Weight fluctuation (gain or loss) or change in appetite

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Loss of hair

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Fatigue or exhaustion

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High blood pressure, irregular heart beat, palpitations

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Chest pain

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Perspiration

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Skin disorders (hives, eczema, psoriasis, tics, itching)

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Periodontal disease, jaw pain

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Reproductive problems/infertility

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Weakened immune system: more colds, flu, infections

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Sexual dysfunction/lack of libido

Emotional Signs Of Caregiver Stress •

Anxiety

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Depression

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Blaming the sick person

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Overreacting to minor problems

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Moodiness/mood swings

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Butterflies

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Irritability, getting easily frustrated, road rage

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Memory problems and lack of concentration

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Feeling out of control

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Increased substance abuse

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Phobias

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Argumentativeness

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Feeling of isolation

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Job dissatisfaction

If you notice any of these things happening in your life, there's no reason to worry. Don't stress over your stress! You can easily make some simple and gradual changes in Page 39

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your lifestyle. The important thing to realize is that you have to make some changes. You can implement them gradually. Nurture patience and appreciation of what you're already doing.

You Have To Take Care Of Yourself I'll say it straight up: Self-care is a necessity, not an option. To care for another, you need to care for yourself. It is as simple and difficult as that. Yet, if you have always seen yourself as a “giver,” it may seem selfish to focus on your own personal care. (Richards 22)

If you don't take care of yourself, you won't be able to continue taking care of your loved one. This means eating right, getting adequate rest, building exercise into your schedule, keeping socially active and taking care of your own medical necessities. Self-care ranks at the very top of the Caregiver's Bill of Rights. This is no accident!

A Caregiver's Bill of Rights by Jo Horne I have the right: 1. To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one. 2. To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength. 3. To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself. 4. To get angry, be depressed and express other difficult feelings occasionally. 5. To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression. 6. To receive consideration, affection, forgiveness and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.

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7. To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one. 8. To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer needs my full-time help. 9. To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers. (Jo Horne “Caregiving: Helping an Aging Loved One”)

Avoiding Caregiver Stress The easiest way to get through stress is to walk. As you walk you breathe deeply and consciously, literally feeling the stress leave your body with each exhalation. Try to keep your mind focused on the positive effects of the activity. If a worry enters your mind, don't dwell on it, just let it pass. You may find that a problem gets solved that you were not even consciously thinking about. According to the caregiver stress website, the best ways to avoid caregiver stress are to: work out, meditate, ask for help, take a break, eat well, take care of yourself, indulge every once in a while, and seek support. (www.caregiverstress.com/avoidcgs.html)

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Walking And Pedaling Walk briskly every day for a half-hour in your neighborhood or on a treadmill in your home. If you don't have a treadmill, either march in place at the kitchen counter or set up a circuit that you can walk in your home. Listening to music makes this a little more enjoyable. Or you can pedal on a stationary bike, building up gradually in 5minute increments to a 20 to 30-minute session, four to five times per week. Remember, pay attention to your breathing and keep a positive frame of mind. Your worries will come and then drift away like clouds going across the sky. Don't dwell on them, just let them go. This walking or biking time is your time. Don't let anything distract you from it. You will build up a routine and really start to enjoy it. Ask anyone who walks or exercises if they ever want to miss a session. They probably don't. They love it. It becomes a vital part of their daily life. It's just a matter of getting started.

Some General Guidelines When You Exercise •

Set aside a specific time every day for exercise.

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Be consistent. To get benefits from any exercise program, do it regularly.

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Warm up and cool down; stretch both before and after you exercise.

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Start with as little as 10 minutes of exercise a day and increase gradually to 30 minutes for maximum benefits.

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Use the talk/sing test. To find out if you’re exercising hard enough or not enough, use this simple check. If you can’t talk and exercise at the same time, you’re working too hard. If you can sing and exercise, you’re not working hard enough.

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Always ease into an activity for the first five minutes, and slow down the pace for the last five minutes instead of stopping suddenly.

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Exercise Ideas •

Take a daily walk. Find a friend to walk with. You will encourage each other when you’re tempted to take a day off.

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Try an exercise video. Look for videos for beginners. Avoid starting with programs that include jumping and twisting. Instead, try videos for stretching, muscle toning or relaxation. A note of caution: Always check with your doctor before starting any exercise program.

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Check out exercise classes offered through community centers, gyms and senior centers. Look into yoga, t'ai chi or other non-traditional exercise programs. They are a great way to improve flexibility, muscle tone and relaxation. Call your community swimming pools about adult swim times or water exercise classes. Many pools offer classes just for seniors or others who want a slower pace.

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Dance your way to better health. Square dancing, ballroom or folk dancing are excellent ways to increase your endurance and improve your balance.

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If you think you need help to find the right exercise program, ask your doctor. (http://www.caregiverslibrary.org/Default.aspx?tabid=130)

We recommend The Relaxation and Stress Reduction Workbook, by Martha Davis. If you work from a workbook or handbook, it will give you a system, a little discipline, and make self-care more enjoyable.

An Easy And VERY Effective 15-Minute Exercise Program Demonstration videos showing the following exercises (as well as ANY that are described in this book) can be found at www.thecaregiverwebsite.com. As a physical therapist I have seen it over and over...some people like to exercise and others don't. There's rarely a middle ground. Here is a simple exercise regimen. Our goal here is efficiency...to show you an exercise program that is simple, will save you time and is complete in and of itself. We have refined this program out of hundreds of exercises. You will not be wasting your time by practicing these exercises. They will work the tightness out of your Page 43

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joints, make you stronger, improve your balance and walking, stimulate your adrenal glands, internal organs, circulation and, last but not least, help you feel better. Do these exercises in a spirit of fun. Start with just a few repetitions, 5-10 times, and gradually build up to 30 or even 40 times. Keep this routine to about 20 minutes, 4-5 times per week. Consistency and staying committed to the daily time that you set aside for these exercises is very important. 1. Stand and twist your trunk gently back and forth, letting your arms swing easily like a “washing machine.” Your arms are very loose and will lightly tap against your low back and buttocks, stimulating your kidneys. Your feet can gently rock in a heel-toe fashion. Most movement is in the waist and trunk. 30-50 times. 2. Lift one arm up over your head, with your palm up, while pushing the other hand down. Look up at the hand that goes up, alternating side to side. You are getting a good “squeeze” of the internal organs with this exercise. 5-10 times. 3. Hold your hands loosely together on your abdomen about 3 inches below navel, drop chin into chest, (massages thyroid), then stretch head up and out (stretches thyroid area). This is like a turtle putting his head into a shell and then stretching it out. For additional benefit, while tucking the chin, lightly press on the abdomen with your hands. 5-10 times. 4. With your hand held loosely in a fist, lightly thump the thymus gland. It's located right at the top of the sternum or breast bone, about 2 inches down from the base of your neck. 20-30 times. (Mark Johnson, Tai Chi for Seniors) 5. Rotate arms forward from your shoulders, like crawl stroke (freestyle) swimming – and then backward like doing backstroke 10 times each direction. 6. Arms at your sides, feet apart, inhale and raise your arms up and out to the sides (palms down) to about shoulder height. Now, still lifting, rotate palms up and start to bring your hands together. Now push the palms down in front of you as you exhale and gently back to starting position. You are making a nice fluid circle with each hand. Inhale up and exhale down. This is a very basic, essential qigong exercise. Imagine that you are gathering energy going up and then sending it down through your body as you circle down. Page 44

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7. Standing, feet apart, back of the hands on top of your head, palms up and elbows way out to the sides, exhale and push up with both hands. At the top, arms fully extended, go up on your toes for a few seconds. Slowly exhale as you lower down on to your feet and lower the arms. 5 times. 8. Feet wide apart, do a gentle half-squat with toes pointing out, trunk erect. Your knees go out to the sides over your feet, not forward. ONLY GO A FEW INCHES DOWN! It is as if you are sitting back on a high stool. Don't do this if you have knee problems or arthritis in the knees. 9. Raise one hand overhead and follow it up with your eyes. Roll your eyes up, keeping head level, and as your eyes get to the top, imagine your vision is penetrating to the pituitary gland in the center of your brain. Repeat with each individual hand and then both hands. 3 times. 10. Stand with arms relaxed, hands by hips. Now swing both arms back at the same time, shoulders loose, almost like you are pushing back on ski poles. Push back, and let the arms swing forward naturally. You will develop a gentle up and down motion of the legs to keep a nice rhythmic swinging of the arms. Keep your breathing deep and relaxed. Do this for 5 minutes. 11. Gentle spinal curl. Starting at the neck, curl down with your spine. You don't need to go too far down. Imagine that your back is like a bicycle chain and you are bending down one “link” at a time. Keep your arms and shoulders relaxed as their weight pulls you down. Let your head hang down, and as you curl back up, start at the middle of your back and curl back up to the neck.

T'ai Chi Probably the fastest growing and most widely practiced exercise for stress reduction is t'ai chi. Practiced daily by millions of people in China, t'ai chi has well-documented beneficial physiological effects, such as lowered blood pressure, improved cardiac function and the like. Other proven benefits of t'ai chi include: •

physical strengthening Page 45

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increased energy, coordination and circulation

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increased body awareness, balance, and personal acceptance

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better posture

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stress reduction

T'ai chi is a great way to reduce stress. The mental focus of the mind leading the movement, thinking only of the movement, the slow flowing shifts of balance, the regular, deep breathing, the harmonious turning of the limbs and the circular openings and closings of the t'ai chi form make it one of the best stress reducers available. (Bonifonte 25)

We won't go into the details of the movements of the t'ai chi practice. The 11 general exercises listed above will form a very good basis for starting this wonderful discipline. Many books and DVDs are available to help you get started. Ideally, you should learn in a group with a teacher.

Simple Stress Relief Massage Acupressure is convenient and gives as much as any other stress relief technique. You have healing power in your own hands. Locate a spot where you feel pain or tension and keep your hand on it while you are concentrating on your breathing. Feel the healing energy from your hand going into the sore area and feel the tension disappear with each breath. If the tender area is near your shoulder blades, you can take a tennis ball and lean against it on a wall or the floor. Just keep gentle pressure on the spot and breathe, that will work the tension out after a few sessions. Many books can guide you in learning and practicing acupressure if you feel inclined to get more involved in it. Shiatsu is an all-purpose and straightforward massage technique that uses the acupoints and the energy meridians. The point is to get beyond the “thinking” brain...let your body heal itself. Let your hands find the stress points, trust your instincts...and breathe.

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The Relaxation Response After you stretch, exercise or walk, you will really benefit from a simple relaxation technique which very effectively reduces stress. The Relaxation Response was developed by Herbert Benson back in the 1960s. He experimented with the physiological benefit of a simple breathing and meditation technique. He found that when you focus your mind and calm the breathing, you get the following response: •

Your metabolism decreases

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Your heart beats slower and your muscles relax

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Your breathing becomes slower

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Your blood pressure decreases

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Your levels of nitric oxide are increased

The relaxation response is very easy and only takes a few minutes. It has two steps in its practice:

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The repetition of a word, sound, prayer, thought, phrase or muscular activity, and the passive return to the repetition when other thoughts intrude. ( Benson 162)

For an informal practice of the Relaxation Response, the sequence might go as follows: Start with quick relaxation of all muscles: begin at the feet and work your way up through the body, tensing muscles and then relaxing them. Tense and relax the feet, legs, buttocks, groin, back, trunk, arms, shoulders; roll the head and relax the neck, and, most importantly, tense the muscles of the face and then let them go. Take three deep breaths, and as you exhale, let go of any tension. Now go into the repetition: Choose a word, a sound, a prayer, or a phrase in your own belief system to repeat. Even a simple word will do: “one,” “peace,” “calm,” “om,” “shalom,” any word will do, it’s your choice. Then use a process of mental repetition to say; “I am relaxing the feet, I am relaxing the feet, I am relaxing the feet...the feet are now completely relaxed.” After you have worked your way through the body, close your eyes. On the in-breath and the outbreath, say your repetition...when you notice a different thought has come to mind, don’t get angry or stressed about it, but let it go and gently come back to your repetition. Repeat for 3 to 5 minutes. ( Benson 162)

This very simple and effective technique has been used by thousands of people! It is the cornerstone of the stress reduction programs that have been in place at Harvard Medical School for over 20 years. Give it a few tries and you will find that in 5 to 10 minutes you will reduce your stress. If you do well with the basics and you want to move on with this, you can try visualization and/or meditation.

A Simple Visualization Technique Visualization can follow progressive relaxation or can be done on its own. Create an image in your mind that is tranquil and restful and allow yourself to be in that place for a moment. Imagine relaxation flowing through your entire body. The exercise can take 5 to 15 minutes.

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Picture a blank screen in your mind. Start with a dot of color in the middle of the screen that you find relaxing. Now the color fills the screen. Now paint a picture on the screen of a place that you find very relaxing...a beach, mountain scene or whatever. This is a time just for you – deep, slow breathing. Enjoy being in your place and take deep slow breaths. Visualize the details of the place. You are safe, warm and calm. Time has disappeared. Now ease into the present. Return to your breathing, deep and slow. Tell yourself that you can reach this place anytime that you want. Wiggle the tips of your fingers and toes. Return to the body very gradually, and when you are ready, open your eyes. (Olshevski 55)

Meditation Much has been written about meditation, and back in the 1950s and '60s when it was introduced in this country, it acquired a mystical association. Meditation is actually very practical. Meditation flows directly from breathing and relaxation. It is the practice of concentrating the mind. The mind moves from a hurried, scattered state to a more focused, stable one. In terms of brain wave physiology: In the meditative state, the mind relaxes and the electrical activity of the brain's cerebral cortex moves out of the rhythm of everyday consciousness (beta rhythm). It assumes a new rhythm close to that of the sleep state (delta rhythm), or the state between sleeping and waking known as alpha rhythm. (Angelo 129)

If you've ever learned about biofeedback, you know that your mind has different wave patterns in different states. Beta is the day-to-day, scattered, stressed state. Alpha-theta is a slower, calmer, more creative and intuitive frame of mind. Delta brainwave is even deeper. It is usually characterized by sleep or dreams. For a meditation practice, you start with concentration: focus on an object, your breathing, a mantra, or prayer. Then you naturally go to a deeper level called contemplation and from there, as you practice with consistency, you can attain the blissful level. This is progression from beta to delta states. Focusing mindfully on the details of the work you are doing will naturally put you in a more meditative frame of mind, i.e., will cause a shift from beta wave to a more alpha-

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theta state. Your actual day-to-day work (including caregiving work) can become a path of spiritual discovery through the practice of mindfulness. Mandalas, Prayer Beads, altars, shrines, candles, Tibetan bowls, incense, labyrinths, gems and yoga are just some of the tools associated with meditation to help you focus your mind. Hundreds of such aids exist. In the next chapter we will help you to incorporate some of them into your daily caregiving work.

Mindfulness Is Meditation In Motion Way back in the late 1980s, Jon Kabat-Zinn and others developed a stress reduction program at Harvard Medical School based on the principles of relaxation outlined above. They then went on to introduce and promote the practice of mindfulness. Simply put, mindfulness is moment to moment awareness. It is cultivated by purposely paying attention to things we ordinarily never give a moment's thought to. (Kabat-Zinn 2)

Mindfulness is a particular way of paying attention. Through practice it can be strengthened and developed. The Stress Reduction & Relaxation Program (which is now called the Mindfulness-Based Stress Reduction Program) begins with basic exercises like paying attention to breathing, eating, or performing a simple movement or task. Most people discover that the attention is quick to wander from the task. We're all complete beginners at this, and are likely to stay that way for many years. When practicing, it's important to simply and gently bring your mind back to the object of concentration while keeping an accepting, almost playful, attitude. If nothing else, we learn to have patience with ourselves (and, therefore, others).

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The important thing is that mindfulness, however well it's practiced, is a proven stress relief tool. It actually serves as the basis for all of the further work in this book. When you bring your full attention to bear on a task, you find that the normal distractions, doubts, cares and concerns don't bother you anymore. They still exist, but you find a certain relief from them. In the space where you are experiencing this relief you are more sympatico with the one you are caring for. You are closer to her frame of mind. You become a better caregiver. You will get better with practice. Keep pulling your attention out of your habitual cares and worries back to the present moment. Focus and refocus on what you are doing. Use this book as your zen alarm clock!

You Have To Make The Time Now that you've learned a little bit about organization, stress reduction and mindfulness, is it helping? Maybe a little? In spite of the initial inconvenience, you will have to make time for these practices. Once you develop a routine it will get much easier. When you are in a long stretch – after months of long nights and countless doctor appointments, even though it may seem totally impossible – you have to make time for yourself.

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Caregiving may not be enjoyable. It can be rewarding, however, if you treat it as a practice where you integrate organization, stress relief and beginning mindfulness techniques into your daily life. Now we will give you some tools to make your caregiving presence even stronger. The Caregiver Revolution Tool Kit: Altar Box Altar Kit Angels Angels Healing Journey American Book of the Dead Art – i.e., small paintings or serigraphs Bath Salts Beacon Beta-Blocker Amulet Chocolates Crystals DVD of Caregiver Energy Exercises 2-DVD set titled "Setting up a Reading Space and How to Do a Reading" Essential Oils How to Do a Reading Booklet Jewelry Journal Life Story Telling Questions Booklet Quilts Rice Heating Pillows for microwave Sacred Readings Salt Candles Silver Spirals Tibetan Bowls Zen Flute CD Page 52

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Step 3 – Strengthen Your Caregiver Presence Now we get to the crux of the matter. We are going to give you practical ways to increase your caregiving attention and presence. Of course, you will need to keep working on the details and developing a more positive, relaxed and compassionate attitude toward your situation. That never ends. Caregiving won't become easy overnight. It's never easy. It challenges you to grow. From moment to moment, one can bear much. —Theresa Avila

So here are some tools to help you grow. Use them if you want to. Don't force anything. You may want to put this book down for a while and keep working on stress reduction, developing an exercise program or dealing with that mountain of paperwork. That's fine, take your time. These tools will be here when you need them.

How To Use These Practices We've already mentioned mindfulness, bringing your full attention to bear on daily tasks. So, really, attention is what you are working with. That's what you bring to bear on your activities to make your solutions precise and effective. Attention can be strong Page 53

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and razor-sharp, or weak and scattered. When you say that you have “a lot on your mind”, it probably means you are dividing your attention between many things and are distracted from applying full attention to what you're doing. Learn to focus at the expense of letting go of your worries. That's why we introduced the stress management and relaxation techniques first before giving you the actual caregiving attention tools. You simply can't do the mindfulness work if you are overly stressed.

The Attention Gym We have touched on several ways that you can round up your scattered attention. Cooking a meal or making a bed, focusing on a small task – these are great tasks to do with increased mindfulness and bring immediate positive change to the caregiving situation. Your care partner is in a frame of mind where a very small thing can make a very big difference. Remember, caregiving attention takes effort. We're always pulled to distraction, but the patient, your loved one, has no other world than the one that is right in front of him. Make it a paradise in the details. Let him know that there's no reason to hurry. The most important thing is the quality of your time together – no matter what the task. Here's a little exercise. Next time you're doing something that you'd normally regard as a petty, menial task, try to focus your undivided attention on it. Put your attention fully and directly on the place where the action, the actual work of the activity is happening. There are no menial jobs, only menial attitudes. — Wm. J. Bennett

If you are wiping a table, focus all your attention on just that spot where the edge of the rag is wiping across the table. Gather every bit of your attention, all the parts that are normally worrying and thinking about past stuff and future stuff – just collect it all and focus it for one second. This is called a one-pointed state of mind. Don't worry, it doesn't last long; you'll go back to your normal state soon enough. It's interesting to experiment with focused attention, but it's not all that easy to apply consistently. The habitual thoughts come back quickly and we “space out” again, and go back to our normal state of mind and worries. Page 54

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You may realize that we can use routine tasks for this exercise and transform them into something more meaningful. If you stay cognizant of this, repeatedly focusing your full attention on the smallest things, you'll be surprised what happens because onepointed attention magically brings your presence into a situation and this changes the picture entirely. So...what is this new arrival, presence?

Attention Has A Friend So far we've seen that: •

Caregiving causes stress.

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You can relieve stress by getting organized, bringing in community resources, exercising, and practicing relaxation techniques.

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Reduced stress allows you to use your full attention for increased mindfulness in your caregiving work.

Now we will see that increasing mindfulness leads to greater caregiver presence making caregiving a better experience for all. Normally we use the word presence to describe some ineffable quality of an individual. “He has a powerful presence,” or, “She has a glamorous air about her.” It is something almost indescribable that makes a person who he or she is. We sense someone's presence. In spiritual traditions, it is said that your presence is a quality that you can develop that is patient, compassionate and caring. Developing real presence is a conscious act. It means that you are bringing your fully-gathered attention to bear on the present situation. If you do this you will see that you have no thought of past or future. You are in the moment with your full attention and you generally have no interest in expressing negativity. Being present in the spiritual life always has a double meaning. There's present, as in here, in attendance. And there's present, as in now, a moment of time. What is the spiritual practice of being present? Being here now. The world's religions all recommend living in the moment with full awareness. Zen Buddhism especially is known for its emphasis on “nowness.” Hindu, Taoist, Jewish,

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Moslem, Christian and other teachers urge us to make the most of every day as an opportunity that will not come to us again. Also under the rubric of being present is the traditional spiritual exercise called “practicing the presence of God.” This means recognizing that God is here now moving through our everyday activities, no matter how trivial they might seem. (http://www.spiritualityandpractice.com/practices/practices.php?id=3)

Presence takes practice. It requires stronger attention. You get it through the continuing practice of mindfulness, bringing all your attention to bear on small daily tasks. It is worth the effort because it is a wonderful thing to bring to patient care. All those around you will sense it. It's so simple; just be patient with yourself, and focus on what you are doing, again and again and again.

Of Spirit, Breath and Being As Mother Teresa spoke about our common humanity, I reflected that most religions define spirit as breath — something we all share. Indeed, the word “breath” comes from the Latin “spiritus” which means, “that which gives life or vitality.” When we breathe in, that invisible breath gives life to our visible bodies: so it is with our spirit, also unseen. Spirit, like the breath, transcends a person, but is part of the person. All of our relationships with others can be perceived as spiritual, especially when we understand that they have in common the life-giving gift of breath. Though I cannot recall all that Mother Teresa said that day, I vividly remember her presence — her being. Her spirituality was expressed not in seclusion or asceticism, but lived through caring. The next day, our group volunteered at Mother Teresa’s home for the dying. From that experience of providing care in the form of watchful attention, I learned an old truth — that as we serve others, we also are served. The heart of caregiving is relational: You meet those cared for where they are, provide comfort and assistance — and share common breath. The fundamental demand of caregiving is, simply, to be there. It is to be completely with the person you are serving, with focused attention and concern. Thus, it is not what a

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caregiver does or says that is most appreciated, it is who the caregiver is. It is a caregiver’s being that is essential and memorable. Of Spirit, Breath and Being (from “A Small Room in Calcutta, the Spiritual Gifts of Caregiving” by Hartzell Cobbs

Your Secret Weapon So we hope that you see how your presence, your “being,” is a secret weapon that can be used at all times against boredom, apathy and negativity. When in the midst of a task: whether driving, sitting with someone, working on a project, cooking or cleaning, you can be in the present moment with no preoccupations or distractions. In this frame of mind you are naturally compassionate. At these times, your loved ones will appreciate the efforts you've made, even though nothing has outwardly changed. A friend who cares makes it clear that whatever happens in the external world, being present to each other is what really matters. In fact, it matters more than pain, illness or even death. (Richards 215)

Of course distraction, stress, worry and other negative emotions don't simply disappear when we want them to. We have to make efforts. We have to stay in the attention gym. We can use various exercises, tricks, techniques and tools. Then we have a fighting chance to stay in a positive frame of mind. Many books, workshops and entire spiritual practices are founded on this simple practice of “being in the present moment without negativity.” So forge on. Have patience with yourself...things will not change overnight. If you make the effort every day for a few seconds or even a minute to work with a more focused and present state of mind, it will carry through the entire day. Focus your attention on a simple activity. Try to calm your inner chatter and simply be here now. A minute of simple presence can be your touchstone for the rest of the day. Even a few seconds of real presence, just being worry-free, is enough to remind you of the possibilities of your caregiving work. We're not looking for quick solutions. The practice of trying to be fully present for just a few seconds per day is a good solid beginning. If you combine it with attention on small tasks, you'll get even better at it.

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We are human Beings, not human Doings. The quality of our presence is what matters, and this becomes doubly true when we are with those near the end of life. As we will discover for ourselves, the more we can embody the spiritual teachings, the more natural and effective we will be in giving spiritual care to the dying person. How we are, is so much more important than what we say or do. Our presence, by itself, can reassure our dying friend and evoke in him or her a fundamental confidence and trust, a sense of hope and meaning. (Rinpoche xi)

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Forty Activities To Bring Presence Into Caregiving Many practices can give a boost to your work with developing presence and mindfulness. Here we list just a few. Pick and choose from this list according to what you like; we don't expect you to use all of these practices. In truth, we could have listed hundreds of practices because anything, even the most insignificant task, can be used to develop moment to moment awareness or mindfulness. Someone who works on him or herself and has the conviction to practice daily mindfulness is known as a peaceful warrior, using any situation that comes her way to build true presence. This is an honored position. We congratulate you. Your compassion will get deeper the more you practice, so forge on! But as we said above, please, remember to be kind to yourself. Don't make unreasonable demands of yourself. You are already doing so much! Easy does it...and above all, don't stress. 1. Share the Care with your loved one. An innovative approach to spiritual caregiving is taught by Marty Richards, the author of Caresharing. Marty uses the partnership of the caregiving relationship to create a different care dynamic. She puts it this way: the care partners need each other. They build on each other's strengths rather than focusing solely on the challenges, concerns and problems. Caresharers (the partners in a caregiving situation) are very aware that keeping their spirit alive is integral to their well-being. (Richards 3) Page 59

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“Keeping their spirit alive” is a wonderful expression. It allows for awareness of the infusion of a timeless, spiritualizing, creative force into your relationship. In Richards' Christian tradition, God can enter the relationship. If the care partners are keeping this as a goal, it can lead to a more vibrant care atmosphere. If you are so inclined, sometime soon when you are with your care partner, try to imagine for a moment, that there's something else going on, something happening that's outside the simple dynamic of your normal “day-to-day” relationship. Imagine, if you will, that a spiritual presence (however you imagine it) is right there with you in the relationship. How does this change things? Does it allow you to see details of the situation a little more clearly? Does it bring seemingly small things to life? Does it help put things in perspective?

2. Active Listening is a simple and powerfully effective tool. When you're with your loved one, repeat words and phrases, even put a hand on a shoulder to say, “We are currently in this moment.” I realize that genuine listening calls for complete attention. In my rush to find answers, I actually create distance between us. My mind leaves the conversation to seek the quickest possible fix. (Samples 54)

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See your loved one as he or she really is, a spirit having a human experience, not just “someone who is always needing something.” Receive what she says and return it back to her in some form that will be a blessing. This takes practice, and a lot of attention! Good listening is a skill, good listeners are not born, they are developed. (Woods 26)

Listening is especially good to practice when your loved one is nearing the end of his or her life. The book Final Gifts posits that it is of utmost importance to pay attention to the words, gestures, comments, utterances and indications of those who are nearing the end of their lives. Any and all of these forms of communication serve to inform caregivers as to what their loved one is experiencing or what he or she needs for a peaceful death. The language is often symbolic and may even appear nonsensical, but if carefully attended to, it usually holds the clue to some element that is important. Quickly paraphrasing some of Final Gifts' suggestions: •

Pay attention to everything a dying person says. A pen and notebook come in handy to write everything no matter how seemingly insignificant, which at a later time may provide insight.

•

Important meanings in any message are possible.

•

Watch for key signs and gestures.

•

Respond to things that you don't understand with gentle inquiries.

•

Pose questions in open-ended encouraging terms.

•

Accept and validate what the dying say.

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Don't argue or challenge.

•

The dying may employ images and terms from work or hobbies to convey valuable information. (Callanan 225)

According to Greg Yoder, listening well means exhibiting attending behaviors; such things as making eye contact, keeping an open posture and giving an occasional appropriate touch. Paraphrasing things and reflecting back the emotion of what is behind the words is a wonderful way to connect. Clarify things, make sure you understand, but don't use euphemisms, offer solutions or give advice. (Yoder 22)

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Never miss a good chance to shut up. – Ken Alstad

3. Life Storytelling is a very important activity. It's so important that you should get started...like today? We could write an entire book about the benefits of life review. People light up when they are telling their life story. It helps them to formulate and clarify their life's purpose, and make peace in their elder years. Recording your loved one's story creates an artifact to be handed down to future generations. Narratives and stories are a meaningful part of sharing care. (Richards 3)

Listen to your care partner's story, write it down and then share it with others. By telling a story, and committing it to cassette tape, CD, video, DVD, paper or website, you get a larger view of it and realize its significance. A story can make time disappear. Stories are a wonderful gift for your children or grandchildren. To break the ice, some good questions to start with are: •

What was the happiest moment of your life?

•

What are you most proud of?

•

What are the most important lessons you've learned in life?

•

What is your earliest memory?

•

How would you like to be remembered?

•

Where were you born, where did you grow up, what did you like doing when you were young?

•

What do you remember about your parents?

•

What are your earliest memories...happiest, saddest memories?

•

What was your military history, life around the wartime? Did you travel? What are some stories about your marriage, etc., etc....?

Please make it a point to start your life review project today.

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4. Family Memories will strengthen the bonds of your family, (your caregiver circle), at a time when it is most important. Gather the entire family...share stories. Some suggestions are vacation memories, holidays, times when your family really “came together,” sibling rivalries and adventures. A terrific tool to use to get the stories started is the question generator at: www.storycorps.org. Adding photographs will surely enhance the storytelling experience. Pull out an old photo album and expand the experience. Tell stories about the times photos were taken. Write them down (suitably embellished, of course) and include the photos as gifts for grandchildren, nieces, greats, neighbors, whomever! This is a wonderful way to create inexpensive, living, lasting heirlooms. Add poetry and song to your family narratives. Remember the special songs that you used to sing to your children? They enhance the story...bring it to life. Your children will be delighted if you remember these songs. You can never guess how much the smallest things mean, what memories they can trigger. The possibilities for life storytelling are truly endless and each is an opportunity for you to show presence, compassion, active listening and the true extent of your caregiver circle. Get out those typewriters! (Or your journal or computer!)

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5. Funny Life Review is pondering and then relating the funniest things that happened to you or your loved one. It can be a fabulous activity. Some possible questions are: What is the funniest thing that ever happened to you while you were eating a meal, (in a car, at school, at church, etc.)? What is the funniest thing you have ever seen a child (a pet, a particular person, etc.) do? What is the funniest thing you ever heard on radio (read, seen on TV, the computer, etc.)? What is your favorite joke (story, etc.)? Give your loved one some time to remember the stories and make sure you write them down! (Smith 137)

6. Keeping a Journal actually reduces stress! Good news! A scientifically proven method for relieving stress is, literally within your grasp: grab a pen and write. You need to reflect on your situation and explore your thoughts and feelings in-depth in a process called expressive writing. You don't have to share your words with anyone; you write for your eyes only. Spelling, punctuation and grammar don't matter. What matters is that you...translate your emotional experiences into language. (Barg 178)

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Writing does its magic by bringing us into the present. Keep a daily journal. Write down anything and everything that comes to mind. A good writing exercise is to keep the pen on the paper for 10 minutes, continuously writing. It doesn't matter what you write; keep at it and you'll see that it gets easier...and leads to more writing. When you embark on an expressive writing session, you might consider treating it as a sacred time by lighting a candle. Your writing medium is a personal choice. If you write on a computer don't edit...just write write write and let your deep-down hidden feelings easily float to the surface. This exercise can be combined with the life storytelling. Here you are telling your own story. Some recommended topics are: “what life means to me,” or “what makes life worth living.” If you begin with the end in mind, a good place to start is to write your eulogy today. Wondrous things can happen with this exercise. You can review your yesterdays and preview your tomorrows. By that I mean if the person being revealed to you as you write is not to your liking, you still have the time to become the person you would enjoy writing about – a preview of things to come! And in reviewing your life, you begin to credit yourself for all your accomplishments. You begin to affirm your gifts and track the continuum of your growth and development. A Eulogy speaks to the essence of you, what defines you as the unique individual that you are...The word eulogy means “good words.” (Cochran 7)

Seeing your eulogy project as a life review may make it easier, but remember, we all have to keep a certain sense of humor about this work. Use this exercise (and it really is one of the most valuable in this entire book) as a growth experience. Where do you want to go with your life? Let the exercise grow as you develop it; don't just do it once and leave it at that. What an opportunity you have here! If he's open to it, help your loved one with the same exercise: recording and having fun with the creating of his eulogy. 7. Empowerment is a way to compassionately relate to your loved one. He is likely to feel as if he has no control over any aspect of his care. Try to find ways to empower him and/or make him comfortable. Ask for his thoughts. Change the surroundings. Fill the room with favorite pictures, music, art, quilts or handmade blankets. Empowerment can involve the way that you communicate with your care partner: Page 65

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Words to Try: For Families talking with a sick person Instead of: Dad, you are going to be just fine. Try: Dad, are there some things that are worrying you? Instead of : Don't talk like that! You can beat this! Try: It must be hard to come to terms with all of this. Instead of: I can't see how anyone can help. Try: We will be there for you, always. Instead of: I just can't talk about this. Try: I am feeling a little overwhelmed right now. Can we talk about it later tonight? Instead of: What do the doctors know? Try: Do you think the doctors are right? How does it seem to you? Instead of: Don't be glum. You will get well. Try: It must be hard. Can I just sit with you for a while? (Lynn 11)

8. Laughter is your best friend. In visiting nursing homes and doing home care, I have learned to never underestimate the power of humor. In a critical health situation, the biggest difference between someone who is generally doing okay and someone who isn't doing well at all is often their sense of humor. It's amazing. A person can be crippled, full of arthritis, fully dependent for his care and as long as he has a twinkle in his eye, he will get along just fine with staff and family. People will make efforts to help him. Like any other faculty, sense of humor gets stronger when exercised. When you are with your loved one, look at situations and try to find the humor. You'll get better and better at this. There's humor in just about everything. The Healing Power of Humor by Allen Klein is a book that we cannot recommend highly enough. It's full of funny stories and useful tips. You can use humor to lighten up any situation.

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When things get goofy beyond belief, it's time to stop believing and get goofy. Few events are so serious that I can't poke fun at them. A little bit of mischief may be what will save my sanity. A piece of ribbon can become a Charlie Chaplin bow tie. A plastic bowl can become a hat...Where does it say I can't laugh when life is too bizarre to take seriously? A little bit of mischief gets me through the madness. (Samples 61)

9. Eyes of the Soul are your true eyes. Look at your loved one through the eyes of your soul. See the perfection of what is, instead of longing for something past. When the natural beauty of something slips away, it's hard to accept the changes. We admired the perfection of someone or something in its prime. Now, with a little effort, we can see that there is beauty in everything and everyone at every time. I explore the changes in my loved one with the eyes of my soul. (Samples 116)

How you do this is a mystery and a very personal one at that. How do you enter the portal of the present moment? You have your own way. What little tricks do you use, what remembrances, what glimpses of past knowledge? This exercise leads to the advanced exercises in Part 2 of our book. If you can get to the place where you are using your “being” eyes, you are in what we call simple presence. This is the space that yogis and other seekers talk about and quite simply is the eternal now...always here and available, yet seldom accessed by our busy minds. Strive to find the eyes of your soul. Make continued efforts to clear your mental chatter and focus on what's happening right now. You'll soon realize how much good you are really doing in your caregiving and you'll never look away again. 10. Punch the Time Card every day. Knew we'd get you with this one! Just when you thought you didn't have enough time to eat or breathe or think, now we're asking you to get a job? Well, not really, but we do want you to realize that you already have one! View your caregiving responsibilities as a job, with a well-defined job description. This can cause a remarkable breakthrough in the relationship. Let your care partner have an active part in defining your (and everyone's) tasks and responsibilities. Roles should be very clear...not just yours, but everyone's. The physical therapist has a job to do as does the nurse, the social worker, the doctor and you, the caregiver. Establish

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clear role definitions and avoid a host of problems. If this doesn't make sense to you, it's because you are doing too much. Have you noticed a certain drift to this book, how your care partner is getting more responsibility and input into the caregiving process? Everything that was usurped when she went into the hospital is now coming back. Knowing who-does-what is a big part of regaining control. So, draw up a list of duties of each of the members of your care circle. Let your loved one define specifically what each person should do. This will empower your loved one and also allow you to step back from your attachment to your role as caregiver. This will certainly be an eye-opening experience. 11. Enriching Solutions to Small Problems are found by always keeping an eye open to finding elegant and unusual ways to do things. If you can pay attention to small, seemingly insignificant tasks, you may find that creative solutions present themselves. Let your loved one do as much as possible to keep his or her sense of independence in small decisions and tasks. Let her make suggestions. Routines are important to the stability of the caregiving environment. They are not what they seem, for they are never truly the same. If you think that today is just like yesterday, then take a closer look. Be like an actor who, going out on the stage every night, asks, “What makes this night different from all the rest?” Identify your routines. How can you keep them fresh? This is a great trick for bringing your presence and attention to bear on what seem to be small tasks with the bonus that perfecting routines will make your loved one feel comfortable, secure and less stressed. 12. Random Acts of Cookies do happen! Bake cookies for a neighbor. Go to a nursing home to visit someone who seldom gets visitors. Go to a playground and pass out balloons. Make a conscious effort to compliment people. The practice of going outside yourself, beyond your normal realms, will bring you into the present moment because, truly, kindness is what it's all about...relating and responding to others on a “being-to-being” level. Many other techniques are listed in the book: Caregiving: Hospice Proven Techniques for Healing Body and Soul by Douglas Smith. 13. Relaxing Events should be visited every day through use of a “relaxing events schedule.” Pleasant Events Theory postulates that spending time relaxing “can lessen stress and give caregivers some control over their distress cycle.” (Olshevski 68)

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Steps to get started with this are: •

Identify what things really help you to relax.

•

Choose which items to schedule now.

•

Start with every other day and then make time for every day.

Relaxing events are things like: watching the sun set, reading from a book, taking a walk, singing, having a cup of tea or cocoa or a glass of sparkling water, reading your favorite section of the newspaper, petting the dog or cat, working in one flower bed or garden patch, feeding and watching birds or fish, reading a magazine or one chapter of a book, enjoying a bubble bath or shower with music and candles, watching escapism movies or television programs, spending time in a private spot in the home or yard, calling a friend, meditating for fifteen minutes, using the Internet for fun and to plan outings. (http://www.agingcarefl.org/caregiver/fourStages/stageThree/section01) 14. Don't Give Up The Ship. As Thich Nhat Hanh, a Buddhist monk, describes: If a life boat is leaving a shipwreck and amidst the chaos just one person is able to stay calm and centered, all the passengers have a much better chance of surviving. Try to imagine right now that you are the steady one in the ship.

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Be steady; don't go up and down. Old people have good days and terrible days. It is helpful if you don't rise and fall with the uncertainties of the day. (Cason 113)

15. Sense of Self can be regained by reconnecting to your spiritual community. For caregivers of frail elders, the physical and emotional burden of their responsibilities is often matched by a spiritual loss — community ties may be severed during a loved one’s illness; belief systems may be called into question. As Rabbi Gary Lavit, director of pastoral care at the Hebrew Home and Hospital/Hebrew Health Care in West Hartford, Connecticut, says, “One week leads to the next and it’s Friday afternoon again. Another week has gone by. People begin feeling like an ‘it’ instead of a ‘thou.’ This loss of self-identity leads to an emptiness, a worthlessness, a sense of nobody-ness.” (http://njjewishnews.com/njjn.com/021408/mwCaregiverConerence.html) Reconnect with the community through creative rituals and prayers. Consider the benefits of spontaneous prayer — rather than formal liturgy — if you are open to it. The presence and mindfulness tools that you are developing will enrich your entire religious community and deepen your more formal spiritual practices. I'd like to pray more, meditate every day, be a more spiritual person...but who's got the time? My days are so full, I barely get done what I have to. I don't have time for long meditation or prayers. Yet I like the sense of peace they bring. When I do take some time to get quiet and connect with my spiritual resources, the rest of my day goes better. I feel more peaceful. It works best if I set aside the same time every day. Then it becomes a habit...I take time for prayer and meditation every day. (Samples 108)

16. Creative Activities allow you to take a step back from caregiving and spend leisure time doing planned tasks together. Plan activities that will encourage your care partner in her sense of success and your family in their ability to create a safe, rewarding environment. The activities can help them [participants] to enjoy each other, get excited over the recognition of hidden abilities and see that there can and will be moments of shared enjoyment and pleasure. (Nissenboim 8)

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partner's ability level. Create opportunities for the person to be successful...30 to 45 minutes is an ideal timeframe for an activity. Here are some suggested activities; for others, please see The Positive Interactions Program by S. Nissenboim: .

Dough art, drawing to music, dusting, clipping coupons, setting up and walking a par course/exercises along the way, family photos and scrapbooks, tea tasting, topical pictures, newspaper reading and topical discussion. Positive interactions allow you to focus on the strengths of your care partner. All too often the negatives of a new medical condition dominate the discussion in the caregiving environment. Take the time right now to think about your loved one's strengths. What do people normally count on him to do and what are his strongest traits? What can he contribute? Try to give your loved one some control of the situation. 17. Quotes and Inspirational Sayings can be used anywhere, at any time and any place. Simply remember a saying and repeat it internally. Here are some inspirational sayings that are applicable to caregiving. We advise that you find one that has profound personal meaning and stay with it. “Live as if you were to die tomorrow. Learn as if you were to live forever.” – Gandhi “I am learning all the time. The tombstone will be my diploma.” – Eartha Kitt “I am not afraid of storms, for I am learning how to sail my ship.” – Louisa May Alcott “You learn something every day if you pay attention.” – Ray LeBlond “When you come to the end of your rope, tie a knot and hang on.” – FDR (Franklin Delano Roosevelt) “Your pain is the breaking of the shell that encloses your understanding.” – Kahlil Gibran “The pain passes, but the beauty remains.” – Pierre Auguste Renoir

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18. Affirmations work by bringing something bigger into a situation, a larger perspective. They jog your memory and bring you back from your wandering mind to the present moment. They keep you oriented to your goals and aspirations. For example, repeat “I am getting stronger every day.” It's simply a reminder to stay in a more positive state. Let your loved one choose an affirmation and work with it every day. Post it in the room. If it's okay with him, let those involved in his care – his care circle – know what the affirmation is. Some examples might be: •

Today I am doing at least three things to make someone else happier.

•

My breathing is my stress relief tool – in with the good energy and out with tension. I will breathe deeply today!

•

I will attempt to do my very best not to manifest negatively today.

•

I will endeavor to be fully present for at least one second during each and every interaction today.

•

I forgive myself and others for any past and failed efforts.

You can create your own positive affirmations...through a process of discovery. Sit and write down what you want to change. Then do some deep breathing, relaxation and get into a more reflective, meditative state. Now gently ask your higher self to create your affirmation. It will come. Write it down and use it as you like. This is based on material from Hands-On Healing, by Jack Angelo, another highly recommended book. 19. Dedications have similar effects as affirmations, expanding your own personal equation as you dedicate your (and your loved one's) efforts to a larger cause. Any aphorism or saying that enlarges your outlook is appropriate. Your efforts really are helping all of humanity. We are all connected, we just don't acknowledge it. Someday, when we do, the universe will breathe a sigh of relief. •

I wish for my efforts today to benefit all of humanity.

•

May future generations benefit from my work today.

•

I wish for these efforts to be used for the benefit of all beings everywhere.

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Calendars, date books and journals are excellent sources of prompts, affirmations and dedications. Here's an inspiring dedication for all of your efforts to the way of service: The Bodhisattva Vow The passions of delusion are inexhaustible. I vow to extinguish them all at once. The number of beings is endless. I vow to help save them all. The Truth cannot be told. I vow to tell it. The Way which cannot be followed is unattainable. I vow to attain it.

20. Prayer Works. Prayer serves to focus the mind and your intentions. We can't recommend Douglas Smith's Caregiving highly enough. It is filled with practical ideas for enriching the end of life experience. Prayer without theology is one of them. You may often find yourself in a situation where prayer is entirely appropriate as an affirmation, request or a dedication. In these cases formulate a prayer, straight from your heart. You don't have to address it to any particular religious deity, you can simply say: We pray for_________ (patience, health, strength, thanks), for ourselves and others. May we really know the joy of true mindfulness and patience...May peace fill this room, and so on. Page 73

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Prayer is effective, but has to be appropriate to the situation and to all of the people involved. You have to be very aware. Be sensitive, but generally people are willing to go along with just about anything as long as your care partner is enjoying it. He who has learned to pray has learned the greatest secret of a holy and happy life. – William Law

21. Ceremonies of Passage are simply procedures and customs, small rituals that make difficult transitions easier. When you focus on the detail of a ceremony, you know how to act and feel comfortable through the transition. Stress is minimized by this and you can allow your higher attention to come in. You can also invite community.

Giving up the keys: As a home care physical therapist, a pressing issue that I often am involved with is when people can no longer safely drive...and have to give up the keys to their cars. This is a huge life transition for most elderly people. One family, knowing that they were facing this transition with their mother, turned it into a small celebration. All of the children and grandchildren gathered at her house one afternoon. They took her car keys and put a big bow around them, placing them in the center of the table. Then they all sat around the table and wrote on slips of paper, “promissory notes,” the

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times when they pledged that they come by to take their mother out for meals, errands or appointments. She would be allowed to put the keys up on the key hook when she saw fit. She could keep her keys, but by hanging them on the wall she vowed not to use them. She studied and questioned the times on the papers...and she accepted them. Walking slowly over to the wall, she hung up her keys. She promised that she would hold the kids to their committed times! They celebrated with cake and ice cream. Since then she has gotten very organized with planning her outings. The kids and grandkids enjoy the time they get to spend with her. Packing up the apartment: “A lot of the rituals of old age are associated with negative events: losing your home, losing someone who’s dear to you,” said Carol P. Hausman, clinical psychologist, gerontologist and founding director of the Washington Jewish Healing Network. “But somehow ritualizing them gives us an opportunity to also look for positives of those events — to remember and mark what was wonderful about the home, or what was wonderful about the person who died.” Hausman recalled a daughter who had moved her mother to a nursing home and couldn’t bear the idea of sorting through her mother’s things and packing up her apartment. Hausman facilitated the creation of a ritual: the patient, together with members of her family, lit a candle and recited a prayer she wrote thanking God for the good years her mother had spent in the apartment. Each family member shared a memory, wrapped the keys in a special box, and asked God to bless her mother; and they expressed the hope that the next occupants would also share good memories there. (http://njjewishnews.com/njjn.com/021408/mwCaregiverConerence.html) Giving up the checkbook: This is one of the hardest life transitions for an older person. How can this process be ritualized? It starts with the elder signing checks which are being filled out by the caregiver. Then transition to the elder signing only certain checks, special ones, with all the monthly expenses being handled by the caregiver. The elder will see that not many checks are issued that aren't strictly routine. Prolong this stage as long as possible. Then, when the elder is ready for the next stage, fill out all the checks and clear special checks verbally. (Berman)

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Giving power of attorney is a celebration somewhere along this path. It is a celebration of a life well-lived. A step on the path of not having to worry about finances and niggling arrangements. Do everything step by step, don't force things, and transform what are conceived as negative events to become positive ones. As work done playfully, ritual remains in touch with what is 'other.' Ritual is not about itself but about relation to the not-self. (Driver)

Making a special gift: Another special ritual is to help your loved one select and gift something that is uniquely his or hers for your children, grandchildren, relative or friends and then present it to them. Rituals are about enduring change, and by focusing on handing down a special object, you keep a positive view of yourself and the situation. See Wising Up by Black and Elkins for more wonderful ritual resources. Please note the importance of ceremonies and rituals as proven and effective ways of getting through transitions. They are integral in relieving stress. They bond us together, eliminate divisions and help us to cope with change. We will have much more to say about this later. For now, whenever possible, if you see a rough spot coming your way, think in terms of making it a ceremony. Rituals are the boats that will get you through rough waters. 22. A Caregiver's Personal Ritual by Carol O'Dell shows some wonderful ways to use small ceremonies and “rituals” to enliven your daily caregiving environment. Let me guess: your morning caregiving routine is pretty spelled out for you. It probably includes dressing and feeding your care buddy (mom, dad, spouse), and yes, the meds. Every day – 2, 3, 4 times a day you dole out the meds. Your routine may also include some physical therapy, schedule doctor appointments, argue with Medicare and insurance, trips to the store and pharmacy. Sound familiar? Those aren’t the caregiving rituals I’m talking about. I’m referring to what you do before you do all that.“What?” You may ask, “Roll out of bed, throw on my house coat and get busy?” No wonder you’re burned out (yes, I mean you!) Without a daily ritual that supports and under-girds all you do, you will become burned out (if you’re not already). Caregiving is more than just a bunch of “to-dos.” It’s not merely a never-ending list of meds and doctor appointments. Caregiving is part of your relationship. Not all, but part.

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Caregiving has something to give you, to teach you – if you perk up your ears and your heart and listen. What you’re doing is actually important, and not just on a physical level. But it has to start early in the morning. As a sandwich generation mom, once I opened my bedroom door, I stepped into a raging river. My morning rituals gave me the strength and insight to face what might be on the other side of that door. Ways to Create Meaning Through Your Caregiving Ritual: •

Make your bedroom and your bathroom a sanctuary.

•

An easy quick-fix that can change your mood is color – paint your bedroom – at least one wall.

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Do you need a soothing color? Blushes, creams and peaches? Or do you need a joyful color? Turquoise, chartreuse or magenta?

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Is your bedroom junky, the dumping ground while all the rest of the house looks relatively good? Well, it’s time to change that! Even if you don’t have but 5 minutes, pick up the stuff that’s cluttering your floors and dresser tops and take them some place else – anywhere else. You deserve a serene room. You deserve beauty and order. Clean it up later, but get it out of your room – today!

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Consider an electric water/tea kettle or a coffee pot for your bedroom/bath. It’s nice not to have to leave your bedroom just to get a cup of chamomile.

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Before you ever get out of bed, come up with three things you’re thankful for – the cardinal that just flew by, a perfect pillow, the fact that you can lie still with not one ache or pain are something to be grateful for.

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Keep that door shut in the morning. If you like TV, move one into your bedroom, or better yet, go for some music. Music lifts the spirits almost in an instant.

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Take the time to fully dress. Brush your hair, put on your shoes, and dress in real clothes before you ever leave your room. This “take charge” attitude will set you up for a good day.

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Make that bed! Why? So you can leave your door open and see that beautiful room that’s waiting for you at the end of the day. Go outside and pick some greenery and put it in your room. Bringing the outside in is healing.

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Keep a journal. Pour your worries, your fears and even your sweetest memories onto the page. You’ll feel lighter knowing it’s kept in a safe place.

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Say your prayers. Talk like you're gushing to your best friend (because you are). Ask for a good day. Ask for patience. Ask for strength.

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If your day goes south – you lose your temper, you hit a roadblock – take a break and go to your room. Shut the door and find a cozy place to sit. Return to what soothes you – vent in your journal, light a candle, say a prayer, strip off your clothes and take a cool shower to calm down.

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Look forward to returning to your room at the end of the day. Imagine that gorgeous color on your walls, your made-bed, your journal waiting for you, the music in your CD or iPod player. Imagine yourself walking back in that room, slipping out of your shoes and letting it all go...

Once your mind comprehends that your bedroom is a “safe place,” you can always return to find your center again. These daily morning rituals can literally save your life. They can be your port in your crazy-caregiving storm. (Carol O’Dell, Author of Mothering Mother)

23. Playing a game together is a pastime that you might not have considered. Sitting together around a game board, or having fun with the Wii, even video or computer gaming online with friends are all good ways to focus on something outside of the norm. While gaming, it's all about the game...and nothing else. Leave everything else behind. You can play like you really mean it and get away from the roles and limits that define you in everyday life. This is very healthy and an excellent stress relief mechanism....and a lot of fun! Are there any “Dungeons and Dragons” fans out there? Gaming trains your attention. Does that sound important? And if you are in a group gaming environment, it teaches you communication and cooperation – excellent skills to have at any time. Almost all games improve problem solving and help with dexterity – mental as well as manual. Puzzles serve the same purpose. Solving a puzzle or maze with a partner or group is a terrific activity. 24. Presence Exercises are little things that you can do throughout the day to remember to be a mindful caregiver. They are related to prompts, but take the practice one step further. The following are taken from Practical Work on Self by E.J. Gold. The Pond is an exercise you can use when you feel that you are reacting in a negative way to someone or something. Try to envision your mind as a pond or a deep lake. The stimulus or person that is going to cause the bad reaction is a stone that is just Page 78

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about to land in the lake. Just before it hits, simply clear the waters of the pond so that there are no waves created by your interaction. Feel the depth of the lake so that there's no effect on the surface which remains perfectly calm and ripple-free as the stone harmlessly sinks deep into the water. In actuality, this exercise simulates reality because, in actuality, everything is energy. You can handle stress and negativity because you can let unwanted energies pass right through your field without reacting to them. If you can relax and clear your emotional field before the stimulus strikes (and before you react), you will have great success with this practice. The Popcorn Exercise is where you simply observe the movements and mannerisms of your body as it goes about its business during the day. Don't make any changes, just observe. If you observe with presence and intensity, the author suggests — you may heat up your own awareness to a threshold of blooming or popping, like popcorn.... Doorways is a simple exercise. When you pass through a doorway, repeat the affirmation you are using that day: “I am present, right here, right now,” or “I am experiencing my true nature as a child of God,” or “I see light and goodness in everything.” Whatever your prompt, use the doorway as a reminder, an opportunity to access it.

25. Walking Meditation is a simple, yet powerful, technique to work with mindfulness. First see that your body is relaxed, then get into a focused state of mind by sensing the weight of your feet. Your posture is “active” (like a gentle pull from a string at the top of your head), not slouched. Focus on your breathing or use a Page 79

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repetitive saying as you start taking steps. Something simple like “Thank you, Lord,” or “blessed be” or “all is one” or “I am relaxed” can work very well (there are hundreds of these affirmations). Coordinate your steps with the breath. Or simply count the breath...or the weight and movement of your body. The thoughts will continue to wander. Gently bring them back to the center of your focus. You will be open to the experience of the present moment. Walking a Labyrinth is a wonderful meditative practice that you might not have experienced. If you have a meditation garden, a maze, or labyrinth in your area, you are very lucky. Take advantage of it! Take a break and go visit this sacred space. You can also “walk” (with your mouse) on a maze or labyrinth on the computer. Technically, labyrinths are different from mazes. A labyrinth has a single path in and out of the garden and a maze has multiple branching paths. Mazes fall more under the category of games. With labyrinths, it's about getting into a focused contemplative frame of mind. To find a labyrinth near you or take a virtual labyrinth walk, go to: http://www.labyrinthsociety.net/ 26. The First Thought of the Day sets the tone for the entire day...so try to make it a positive one! You will naturally remember and access that thought throughout the day. It will come up unconsciously and provide a natural boost for your efforts. The same holds true when you fall asleep. If you keep positive thoughts right up to when you are falling asleep, they will stay with you throughout the night. The time you spend sleeping can actually be beneficial! You will also have a better night's sleep. If you go to sleep with positive thoughts and awaken with them, then you are doing really well. This is incredibly powerful. It is a trick that is used by the most advanced spiritual practitioners...and so simple! If you can take a few minutes during the day to access those positive thoughts, then you are learning the true meaning of meditation. Your real nature is one of compassion and unconditioned awareness. Like the moon shining behind clouds, the clouds come and go, but the moon is always shining. Negative, busy thoughts are like clouds. If you can, relax during the day for five minutes, let go of concerns of the day, go to the window and glimpse the moon of your true pure awareness, then you will know true

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happiness. It doesn't depend on any external contingencies. Access it upon sleeping and waking and soon it will be available to you throughout the day. 27. Start the Conversation is a conceptual framework espoused by Ganga Stone (see bibliography) that enables us to bring death out into the light of day. This openhearted way of dealing with death has been practiced by Buddhists and other advanced cultures for many hundreds of years. We don't need to tell you that in today's media-dominated society, death is covered by countless layers of fear and taboo. This is encouraged by violent and painful depictions of death on TV and countless other fear-mongering areas of our culture...did someone say video games? This completely unnatural portrayal serves the media by keeping people fearful...with limited and captive imaginations. So we stuff death under the living room rug or into the closet, and we spend our lives tiptoeing around it, or tripping over it or trying to pretend it's not there. Where death is concerned, we assume the ostrich position: heads in the sand and bare behinds in the breeze. Dignified pose! There's a reason for the dread and the denial. We really do believe that death is the end of the line. And if it were, no amount of fear would be excessive...no grief could possibly be sufficient. Truthfully, in nature and to our deepest selves, death is just another part of the wonderful cycle of existence. Listen, death is a transition. We all survive. Of this I am absolutely sure...(Stone 4)

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We aren't going to go into philosophy here. Everyone has his or her own opinion and point of view. Our point is, that if you can start thinking and talking about what death means to you, you might see things that were hidden before. We know that this is difficult. Please realize that we're not asking you to stop having feelings, but to see the value of bringing these feelings out into the open and discussing them. Start a healthy dialogue. Some initial questions could be: Who dies? Do “I” really die? What part of me could “survive” death? What do the world religions and spiritual traditions really say about death? What is grieving? Why do we grieve? How do our fears influence our viewpoints? Where do these fears come from? What is there to fear? No one has the “correct” answers to these questions. Most of them bring up deeper questions. It is in the conversation, the opening of our minds and the examination of our deeply held assumptions that we grow. We recommend Stephen Levine's classic, Who Dies, as an excellent introduction to this process. Deepak Chopra also encourages that we start the conversation. He advises us to study the teachings of saints and sages, the experiences of those who have had “near death” experiences, and the “delogs” who

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have journeyed back from death. See his most enlightening book, Life After Death: The Burden of Proof. After all, there is not a single one of us who is not going to die, sooner or later. So how to prepare for death, how to undergo the death process with the least trauma, and what comes after death — these are matters of vital importance to every one of us. It would be impractical not to study these issues with the greatest of care and not to develop methods of dealing with death and the dying in a skillful, compassionate and humane way. (Thurman xvii)

According to the Buddhists, the teachings about impermanence and death are the most valued. Death is the elephant in the room, the 800-pound gorilla. It can serve as a constant reminder for you to be mindful; cherishing every moment that you are together with your loved one in this precious life. 28. Saying Goodbye — A Modest Proposal. When we are dying, if we have settled all of our affairs and are focused on our spiritual path, we have no reason to look back. All of our business is in order and we have said goodbye. There's no reason to stay around; our work here is done. Even if death were to fall upon you today like lightning, you must be ready to die without sadness and regret, without any residue of clinging for what is left behind. Remaining in the recognition of the absolute view, you should leave this life like an eagle soaring up into the blue sky. (Dilgo Khyentse Rinpoche in Cochran p. 25)

Helping another get to the place of no regrets is an act of service by the caregiver. The first step is to start a dialogue where you help your loved one determine what is really important to her. One way to do this is to give her a way to figure out what she will do with her “stuff.” You can help her approach the idea that she will have to do something with all of her dearest possessions. Our modest proposal states that it is very good to start this process with plenty of time left in her life, and that there is a system which allows you to take care of what seems to be an overwhelming task. Slowly, gradually, with compassion and care, you work at the “list.” We have devoted an entire section to this in the final chapter, see page 116.

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29. What You Actually Know Yourself. This exercise is from a passage in A Path with Heart by Jack Kornfield, another highly recommended book. It comes from a story of a widow who was grieving the loss of her husband and was told by different people in different spiritual traditions that his soul was making progress...in a bewildering variety of ways. Confused and upset, trying to sort out what was true, she came to see me (Jack Kornfield). I asked her to consider carefully what she actually knew herself. If she put aside the Tibetan teachings, the Sufi teachings, the Christian mystical teachings and looked into her own being and heart, what did she already know that was so certain that even if Jesus and the Buddha were to sit in the same room and say, “No, it's not,” she could look at them straight in the eye and say, “Yes, it is.” I was asking her to put away all her philosophies and beliefs, the maps of the past and future lives and more, reminding her that what she knew might be very simple. (Kornfield 158)

This disarmingly basic activity is always available to us and in the age of information overload, we really need it. Plumb the depths of your soul and find out what is true. The human heart is the most sensitive instrument – William McKibbon

Life can get so much more simple, honest and sensible in the clarity of following the compass of your own heart. On your journey to awakening, you will have to discover for yourself what is true. In the process, you may come across your inner Being, your essential self, your heart of hearts, your true teacher, the center of your being and the Universe. Maybe the paradoxes will cease to puzzle you. Maybe you'll find there are no answers, there might be no questions. (Christiane Wolters)

30. Not This, Not That is a classic meditation technique. It follows from the previous exercise. Some time when you find yourself in a reflective state of mind, go through the process of questioning in your deepest self, who you really are. Are you the caregiver? Well...maybe, but you weren't that a few years ago. Are you a mother? A father? Examine each of your roles in life. Brother, sister, spouse, professional, parent...is that who you are? No answers are necessary, this is an exercise in questioning.

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Are you this body which has changed so miraculously over the years? Are you the mind which has worked so well over many years? Who are you? This classic exercise has been practiced in the yoga tradition for hundreds of years. The classic yogi saying is: “I am not this body, this body is not me, I am not this mind, this mind is not mine. I am not these emotions, these emotions are not mine...I am not this intellect...etc, etc.” This is called the “neti neti exercise.”

Getting Stronger As You Go? As you get more competent in your caregiving you will realize that almost all of your daily tasks can be done with more attention and presence. Bring that special attention to bear on your work. Realize that you can bring mindfulness into any situation, even your considerations about death. Strengthen your practice but keep it gradual, and keep it light. In addition, pay attention to your stress and worry levels. Breathe deeply and consciously. Keep your exercise practice consistent. You will find that your caregiving duties are getting more rewarding. You are becoming aware of the subtle side of the caregiving equation, and now have some activities and techniques to reinforce your mindfulness practice. Now we will show you some actual physical tools that will help you to strengthen your practice. They will help you to create and maintain an active atmosphere around your caregiving environment that is amenable to bringing higher attention into your practice. Page 85

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31. Paintings, Pictures and Works of Art are portals for the imagination, creative inspiration and spiritual awakening. “Lovely objects in the environment spark the attention, lift the spirits, and lend a feeling of celebration.” (Samples 73)

Art can be deeply moving, inspirational, and can cause great joy. Art that is done well affects the mood of a place and elevates all who enter it. When you are near a great work of art, you are changed by the experience of its beauty. You are sharing in the artist's moment of creation. This is like a portal into a timeless state. Great artists paint with ink in flowing water because they realize that the most important component of any work is the moment of creation. Fill your environment with expressions of this creative energy and you will find that you're living in it, enjoying it, one eternal moment at a time. As I am writing this book I am working with a home care patient who is dying. The environment in her home is uplifting...plants, windows and large incredible works of art. Right next to her bed is a large Miro print. It is so powerful and joyful, the effect is palpable. She is lucky that her daughter collected art and has now filled her environment with it. Visiting with her is a pleasure, normally an upbeat experience even in the face of her pending death. She is a remarkable woman. (G. Abrams)

32. Personalized Items such as a knit shawl, embroidered bags, pillows, pillow cases, quilts, stuffed animals, just about anything you can think of that has a personal touch makes the caregiving space more intimate and familiar. This is based on the same principle as above. Clinicians in the hospitals all know someone who is very happy that on her bed she has a quilt from home. People who do their own knitting and crocheting do well to surround themselves with their creations. It's more than just the object. A hand knit shawl has all the love and attention of the knitter woven right into it. Do you believe in magic? If you do you will see the possibilities for having handmade creations all throughout the caregiving space. Many people take advantage of this magic by combining various hobbies with their faiths – sewing prayer quilts, knitting and crocheting prayer shawls, painting icons,

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making prayer shrines, Prayer Beads and stitching skull caps. The spiritual energy of the moment of creation is carried by the object. 33. Shrines have been used for hundreds of years in different cultures to assist prayer and remembrance. They can be used in a day-to-day environment to help anyone at anytime. Take a photo of your loved one and put it in a small frame, displayed on a table top or on the wall in a special place. Use it as a tool to remember all the good qualities of your loved one and, if you are so inclined, say a prayer or affirmation as you go by. Sit in front of an uplifting image in a shrine. It helps if it is somehow personally appealing to you. Shrines are vehicles to bring in your higher attention. They can help you get to a meditative space more easily, allowing for the focusing of attention and for prayer. Building a shrine, assembling the elements to connect to an ancestor, whatever higher power you respect, or a spiritual realm, can be a very rewarding exercise. The shrine itself is a representation of something much larger and may be much more elaborate and beautiful in your mind. Don't allow yourself to be limited in your visualizations of the divine, in fact, let the shrine expand them. The real temple is deep within you...you can access it at any time. 34. An Altar contains many of the same elements as the shrine, or can even hold a shrine. You can add many things: a cross, sacred objects, photos, pictures, anything to help to focus and elevate your mind. If you find that your energy is flagging or your compassion is wearing thin, stop by your altar or shrine and spend some time. You will be instantly refreshed by the spiritual energy that has accumulated there. 35. Healing Essential Oils are not just used to put pleasant odor into a room, though pleasant fragrance is one of their characteristics. Oils are used with great subtlety. They are for internal healing and balancing and should be always used and considered on an individual basis. Aromatherapy is commonly used as a term to describe the use of essential oils. It is very versatile because we can use the oils in a variety of ways, taking them by mouth, using them in massage, inhalations, baths and so on. The oils work in three distinct levels. In the literal sense of the word “aromatherapy,” the aromas play an important role. Call it psychosomatic, they do make us feel better and feeling better can have Page 87

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tremendous therapeutic influence on physical symptoms. Much physical illness is in fact, to varying degrees, stress related. Aromatherapy not only works on an olfactory-psychological level, the oils work on the body in a variety of ways, and are among the most potent antibacterial agents known to man. Essential oils can also be used to balance the subtle energy flows in the body, in a way similar to acupuncture. (Tisserand 8) We are most interested in this last use. Oils are “essential” oils in that they contain properties derived from a plant's essence. They are distilled very carefully using different methods and cannot be synthesized. There is mystery here. We cannot synthesize the living properties that exist in an oil any more than we can make an apple out of pulp, seeds and skin. We are more interested in the energy that “forms” the oil than just the oil itself. Essential Oils are like the life blood of a plant. They are not the whole entire plant, but are whole organic substances in themselves and embody the characteristics of the plant from which they come. The essence is the most ethereal and subtle part of the plant, and its therapeutic action takes place on a higher, more subtle level...having a much more pronounced effect on the mind and emotions than the extract. (Tisserand 8) Applied to the skin, oils use the homeopathic principle; the vibrations of very minute amounts of pure oils resonate with the vibration of the person who is wearing them. This almost always has a balancing effect. This is why we only use pure botanical essences and never use oils derived from animals. We also don't use mineral oils because they have very little life force. Oils can balance the senses, create a harmonious serene environment and shift the attention away from the “patient mode.” They are meant to help to create an internal environment for neutralizing, cleansing and opening up the imagination. The study of essential oils and real aromatherapy is a life's endeavor, much like homeopathy, herbal medicines, work with gems, crystals and other energetics. 36. Jewelry creates a personal atmosphere of remembrance and empowerment very similar to the oils. It enriches one's personal atmosphere and may even connect one with memories of past lives.

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Jewelry has been worn from the earliest time of human existence. For a long time we humans have worn bones and shells, wood carvings, precious stones and, most of all, beads to adorn ourselves or to express status. A lot of the gems or carved items were attributed magical qualities and often jewelry was worn as talismans and for magical reasons. We recommend craft jewelry in the ancient style. Pieces that are fashioned and imbued with the intention and memory of our history since the dawn of human civilization and which express our innate drive to evolve, to find truth, beauty and compassion. There is a connection with all of humanity when ancient-style jewelry is worn with admiration as well as compassion — honoring our journey as humans here on this planet. Wearing ancient-style jewelry with that consciousness changes how you feel; a power comes in and a confidence. You somehow get bigger, uplifted and more graceful. It does not take exquisite ancient gold earrings or an elaborate ancient necklace with the most iridescent ancient beads to connect in this way. A simple bead will do the same, or a piece of jewelry the ancients could have made with their hands, tools, knowledge and ingenuity. A lot of contemporary jewelry is very exquisite and many wear stones for their magical or healing qualities. You may have your own reason for wearing jewelry: for me there is a magic, a connection with humanity from way back that gets transmitted. It changes how I feel. There was amazingly exquisite beauty then. Astonishing craftsmanship. Holding ancient beads, you are mesmerized, transported and connected to a time and space that we shared hundreds and thousands of years ago. I love that. I look at some ancient beads and literally can see the craftsmen doing this amazing work. If you are ever so lucky to find an authentic piece that has been used in prayer or healing, or in oracle — you will feel the power and magic of it. Even a simple bead from that time carries that within. It has a history no modern jewels have. And the hand hammering and bending of metal into a beautiful piece of jewelry — simple elegance. (http://www.jewelsofancientlands.com/) 37. Music is a perfect choice for a tool to energize the caregiver's surroundings. It is transformational, can change one's mood quickly and open us up to imaginative and spiritual experiences. Classical music is sublime, jazz is uplifting and transcendental and rock can be energizing.

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Music is also a great way to connect with your care partner. Music stays in the memory longer than intellectual information. We all remember songs from long ago, and oldies are a great way to reminisce and segue into storytelling. When one is near the end of life, hearing sometimes remains when all the other senses have failed. It is the last sense to fade from existence. Noting this, harp music of very specific melodic and rhythmic structure has been played at the death bed of many throughout history to aid in a peaceful passage. Music was commonly used in the middle ages in the Christian tradition as a rite of passage. Quiet sacred chanting at the death bed is practiced in many eastern and western traditions. Begin a conversation about choices of music that might be appropriate and desired. 38. Prayer Beads have been used for over 2000 years. According to most historians, they originated somewhere in India around 500 B.C. Strings of prayer beads have various names, originally known in India as Mala, from Sanskrit, meaning garland. In Greece they were called worry beads. Prayer Beads are used in Hinduism, Buddhism, Christianity, Islam and Baha'i. Beads are used to aid prayer and meditation, especially for reciting repetitions of prayers or chants called “mantras,” and to help facilitate ritualized meditation practice. They allow one to focus on the meaning of the prayer or mantra, as it is repeated without having to also concentrate on counting the repetitions. Each time the prayer is repeated, the fingers move to the next bead. In general the purpose of all Prayer Beads is to help create peace and harmony for the individual, the community and the environment, all of which are manifestations of Absolute Being. Malas have been used for thousands of years in Tibetan, Indian, Chinese, Japanese, Buddhist and Hindu traditions. They are widely used in Islam as well. Prayer Beads in India came from the ancient Hindu Vedic tradition which had great reverence for sound. The Mala was one of the main tools used to focus one's mind and devotional aspirations. These “garlands” of sacred sound vibration were recited over and over. The Mala itself becomes empowered with spiritual energy as a result of these recitations and further aids one's practice. While reciting mantra, it is auspicious to hold the Mala to one’s heart. This is symbolic of “protecting one’s heart” with meritorious and virtuous activity. Recitation of a mantra, or prayer, while holding your Mala will benefit a greater number beyond yourself alone. Use as often as you can with whatever time and level of commitment to

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spiritual practice you now possess. Malas also serve as a portable “sacred space”; after months of use, you begin to relax and enter the space as soon as you pick them up. The Rosary means a crown of roses, a spiritual bouquet given to the Blessed Mother. The first clear historical reference to the Rosary is from the life of St. Dominic, about 1221 A.D. Praying the Rosary is usually viewed as a Catholic practice, though it is being increasingly adopted for use by Protestants. Praying the Catholic Rosary is fairly complicated with a variety of prayers and different cycles of prayer. The Anglican Rosary simplifies this...the prayer of Jesus can be repeated with The Lord's Prayer at the end or beginning. Often the Apostles' Creed is included as well. We won't go into the details of the Rosary here. It is a beautiful and most beneficial practice. For more on the subject, we recommend the book Bead One Pray Too by Kimberly Winston. You do not need to hurry when reciting the mantra or prayer. It is important that you are aware of the sound of your voice; it helps resonate the vibrations throughout your body. The sound of sacred mantra or prayer also calms and protects the mind. At the same time, prayers said aloud help awaken the creative aspect of your being. Using the Mala in this way will purify not only your speech, but mind, emotions and body too. The Mala, Rosary or Prayer Beads are not jewelry and should not be considered such. Simply wearing a Mala all the time does not produce power, as it must be used with thought. On your altar would be a good place to keep your Mala when not in use. Your Prayer Beads are sacred, and will get imbued with your divinity, intentions and energy. Do not let other people handle them simply out of curiosity. Touching someone with your Beads as an act of blessing or healing may be appropriate if they ask you to. Do not lay your Mala, or Prayer Beads, or Rosary on a chair, the ground or floor. If you drop it on the ground, clean it off and say a prayer of blessing from your native tradition. 39. Your Healing Hands are valuable tools for connecting to your loved one, relaxing and relieving pain. We all have natural healing powers. The energy exercises and the acupressure practices that we showed you above will open up your sensitivity to the healing power of your own hands. When you are doing the exercises or right after, rub your hands together vigorously and then hold them about 6" apart. Keep them relaxed and see if you feel anything, a warmth, tingling or magnetic feeling. That is your own qi (chi) which is a subtle Page 91

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energetic substance that flows through your body in specific channels and has a lot to do with your vitality and health. Qi is said to be the interface between the nervous system and the circulatory system. The important point is that with a little practice, you can sense it in yourself and others. You can do healing energy work in sitting or lying position. First you need the permission of the person whom you are going to heal. This is very important, so clarify this and make sure that you have full permission. This principle also holds when you are doing self-healing work. Are you sure that you want to get better at this time? Healing may involve some discomfort, growth, and/or getting rid of old patterns and behaviors that have been familiar and comforting to you. If cleared and ready, you should next attune to your loved one by placing your hands on his shoulders. Take a few minutes, relax and breathe. Now hold your hands with your palms about 3-4" away from his back and move them slowly up and down the body as if you are giving a slow back rub while not actually touching. Keep your hands relaxed. You may feel points where there is more or less warmth and tingling, and these could very well correspond with painful areas. For an area that is low in energy, keep your hands over that spot and try to feel that energy is streaming out of your hands into it. For an area that feels very high in energy, hold one hand at that place and another at a low or neutral area and feel that energy is flowing into your one hand from the hot spot and out of the other into the cool one. Another technique is to hold both hands at the hot spot and ground it through your body, down through your feet into the earth. Your entire body should be relaxed and comfortable as you are doing this. Feet should be apart and knees slightly bent, and if you are sitting, keep your feet on the ground. Try to keep your back straight but not rigid; arms, shoulders, and hands are relaxed. Keep breathing! Distance Healing is an extension of the energy healing practices. Sit and get into a centered frame of mind. Instead of placing your hands on your loved one, you envision him or her sitting in front of you. Breathe, relax and feel light or healing energy building up in your heart. Now surround your loved one with that light and energy flowing out of your heart. Try to envision that person in the field of light. The more detailed the visualization, the better. Don't pay any attention to manifestations (light

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changes, sounds) around this practice. Just keep that good energy flowing to your care partner. 40. Precious Stones, Minerals and Crystals have been used since antiquity for manifesting and focusing spiritual energy. Volumes have been written about this. The basis for the belief that crystals can have spiritual effects is that they act as an interphase between electricity, vibratory energy and physical manifestation. They transform electrical energy into physical energy and vice-versa by way of the piezoelectric effect. For example, the very tip of a phonographic needle contains a tiny crystal which converts the mechanical movement of the stylus over the grooves in the record to an electrical signal. The other way around, crystals turn radio waves into electrical signals. This is the basis for crystal radio sets. It is fascinating science. Crystals are also known to receive spiritual rarefied energies and can transmit them to the physical planes. Of course, there is much more to it than this and we are not even scratching the surface, so to speak. If you feel an affinity to using crystals to help focus your “higher energies,” then you should investigate, research and utilize them! Entire worlds await you and you will be amazed at what you discover. We all have inherent dispositions to different lines of work...and, in my humble opinion, as long as you're moving along a path with heart, you're doing the right thing.

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Step 4 – Help Those In Transition Now, hopefully you have a finger-hold on higher attention, mindfulness and presence. You have realized that caregiving can be a vehicle for your own spiritual growth which is propelled by your love and caring for someone else. That's the excellent thing about this work. You have the natural interest in it, the magnet of the love of your care partner to keep you engaged and interested. Your practice will grow easily and you will have a better end of life experience because of the work that you're doing now.

Crises Happen Even in the best of situations, things can get overwhelming at times. The situation accelerates and we feel loss of control. We call this a crisis. Crises are transitions, times of change from one stable state to another. If you view them as such, it will help you to stay focused and remain helpful. By staying present and steady in the situation, you actually change it. Try this affirmation: “I realize that this crisis is a transition. I will stay present during this transition with loving kindness and attention.” Remember what we said about the lifeboat. If you keep calm, you help everyone in the boat. Things are going to happen. You can stay present and alert in the lifeboat passing through the stormy seas of transition.

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The Places Of Change Ancient and traditional cultures, like the Native American and Tibetan, have elegant ways of dealing with crises as cultural traditions. The older cultures recognize that transitions are an integral part of life. They have classified and named certain universal transitions. They have studied them and passed along proven ways of moving through them using ceremony and ritual. For example, rites of passage for adolescent males to manhood give these individuals clearly defined and healthy ways of dealing with unconscious forces that arise at this time. Other transition times are also handled in traditional, relatively formalized ways: weddings, births, family restructuring, transitions into old age, and, of course, death. In your life you experience many pleasant and not so pleasant transitions between (seemingly) solid and predictable realities. When everything is okay you are not aware of them. Eventually something triggers a crisis and you have to do something or make some choices. How you do this is as important as what you do. If you have a cultural framework, that might help. It will give you guidelines as to how to proceed. But many of us don't have this. We are outside formal religions or traditions. The number one rule for those of us without a cultural framework is: DON'T PANIC. Don't make any impulsive sudden moves. If you stay focused on detail, there is a part of you that knows what to do. In this chapter we will help you to understand this. Try not to lose your attention, your good intentions or your equilibrium. You and your loved one will certainly be okay.

Entering The Transitional Space Though nothing looks small when you are going through it, the “smaller” life crises are precious opportunities where we can “practice” how we will act when faced with larger, more dramatic transitions in our lives. Bardos (these times of transition) are also opportunities. Because they are periods of transition, each bardo is an opening or gap in our seemingly solid reality, presenting us with the potential to change; to transform our attitude, choose a fresh direction, or, through meditation, to release our grasp on the material world and discover, when we

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turn inward, the innermost essence of our being, which is unchanging and deathless, our true nature of mind. (Longaker 29)

When you enter someone's space, whether in crisis or not, the first thing to do is assess the situation. Try to blend with the tone and mood of the room. If you make a conscious effort to do this, you'll be surprised how much you instantly learn. Try to match the manner, voice, pitch, subject and tone of those who are in the room so there is very little observable difference made by your presence. Don't make too big a deal about this...don't make yourself look morose; just fit in seamlessly. Often we will enter a room where someone is upset, the situation is emotionally charged or there is conflict. Here are some questions that might be helpful at this time, addressed to those in the room as appropriate. •

What do you think is happening right now?

•

How does it seem to you?

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If this were happening to you, what would you like to have happen right now?

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Did you talk about what could happen?

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Do you know of anything he would like you to do or say?

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Is there anything that you would like me to do?

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Is there anything you would like to ask or say?

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Is there anything that I can do for you?

This set of questions will draw the attention of the participants away from emotional manifestations to focus on the details of what is actually happening. You (and they) won't be immune to the emotions, but you'll be able to stay focused on the questions in spite of what you're feeling. Let the answers guide your responses. You may find that things are not as bad as they seem. You may hear a hidden message from someone in the room about what he or she really wants. This is not unusual in these situations, so make sure that you listen to the actual answers! Page 96

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This is the basis. Now we develop your crisis-abilities in a workshop format.

The Crisis Bridge Workshop We all have experienced crises and know the anxiety, frustration and anger that sometimes accompanies them. Here is a secret. A valuable energy potential surrounds transitions and we can use this energy to move forward. The purpose of the next section (which is actually given in workshop form) is to explore the potential of change and how we can make a transition with completeness and wholeness. The secret is to get outside of the change and observe it from a higher viewpoint. When you encounter a crisis, first ask yourself, “Why am I here? What do I hope to accomplish?” Does that sound odd to you? Please remember that you are a part of what's happening. The observer effect in physics says that what you are watching is being affected by your watching it. So it is best to acknowledge that reality. When that is settled, put your immediate focus on the details. You can ask the person who is going through the crisis, “Please describe the transition that you are experiencing.” You want the person to give details of the transition and, if possible, in the context of his or her entire life. “What transitions have happened before and what did they look like?” “How did that person solve them at that time?” Try to get some objectivity by this, the point of view of an outsider looking in on the crisis. Here is an excellent method to help guide another. You will clarify the crisis, visualize the resolution, and then physically represent the movement through the transition to the solution. The task is to move a small chair, (the crisis) “from one part of a room to another” (the transition). 1. Have the person in crisis sit in the chair as the “lightning point” of transition. Then have the person tell you in detail how it would look if the transition were complete. 2. Have him get up from the chair and, walking behind it, tell the one in the chair (still imagining himself sitting there) the viewpoint that he has from standing behind the chair. Page 97

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3. Return to sitting in the chair, the person should take the point of view that all existence and all transition is the personal transition you are undergoing in the moment. 4. Now stand up again, got to the back of the chair and gently pick it up. Imagine that you are still sitting in it. Now walk with it (slowly) to another part of the room – as a physical representation of moving through the transition cycle. Do this as many times as you wish. Write down the steps you notice. Reconvene and ask each participant during the break what he or she noticed. How does it seem to you now? What would you like to do now? Is there anything you would like to ask or say? By making the crisis into a metaphorical, physical action that is carried out and repeated as necessary by the participant, it is objectified and clarified. The participant puts real, unqualified, i.e., non-judgmental attention on it. Writing down what has been noticed helps even further in being objective. Your role as a guide is also clarified because the assist of a (seemingly) simple physical movement shows the limits of what you can do. You can ask questions. You can accompany. You can support. You reflect the voyager's questions and mirror them, without trying to answer them. It would not help you or anyone to superimpose your answers on someone else's crisis. They each have to experience and resolve it to their own benefit and satisfaction. In learning to stay present and work with crisis, you are really learning how to work with any transition or change. This will help you immensely in your preparation for the death and dying work.

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Dying As Transition In general, our care of the dying needs to change radically, and if it does, our society will heal. This is what the caregiver revolution is really about, a radical societal change in how we view the end of life. It can truly be a valuable time of growth for all involved. Spiritual philosophy seeks to transform our understanding of death completely. It boldly suggests that death is not a horrendous evil at all, but rather an integral part of all existence, to be embraced and not feared. It offers a completely positive approach to life and death in which dying, aging, suffering, and grief are portrayed as parts of a process of spiritual awakening. (Rosenberg 10)

The verb “to die” comes from the Indo-European base “dhue-,” which means to pass away, become senseless. Dying is a natural part of living. Dying is the personal experience of the being letting go of its physical body. Dying can be observed to occur in stages. Take note of these varying stages as they occur. Here is one description. We have listed some other descriptions in Appendix G. 1. Earth sinking into water. A deep, incessant sensation of slowly increasing pressure, of being inexorably drawn downward into a pool of mercury or lead, of melting into the earth.

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2. Water sinking into fire. A sensation of clammy coldness as though one had been suddenly immersed in ice water — it begins with uncontrollable shivering, gradually merging into unbreathably hot, oppressively still atmosphere. 3. Fire sinking into air. A sensation of being just on the verge of explosion, giving way to a sensation of total dispersal of self. 4. Air into Clear Light. A feeling of being utterly at peace, utterly alone, completely outside space and time, free of all necessity; a sudden, powerful and thrilling sense of deep, ironic knowledge sweeps through the self, but this great, profound, sweeping, all-encompassing knowledge doesn't seem to refer to anything in particular. (Gold, American Book of the Dead, 73)

Stages In The Dying Transition You and your loved one may go through several stages in facing death. These were well-described by Elisabeth Kubler-Ross in her seminal work On Death and Dying. View them as transitional signposts, nothing more and nothing less. They are perfectly normal. This is completely natural and the more easily that you can accept it, the better. Indeed, in Egyptian mythology, when passing into the afterlife, one's heart is weighed against a feather. The message: keeping a light-hearted feeling, a certain detachment about your own situation is important. We have listed some variations on the stages, some expressions, things that you might catch yourself saying that indicate you are going through one of the stages. Denial This can happen to everyone else but not me. I haven’t ever had to accept ugliness as a part of my physical image. I can’t look at myself. I can’t bear the thought of suffering physically. I just can’t believe that it would happen in this way. I just know that I have more time. This isn’t the way it’s supposed to happen. Technology should be able to save me. Page 100

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I can eat what I want and do whatever I want no matter what the doctors say. I’m feeling so much better. I’m going to take a trip to Hawaii (a vacation). Depression and Grief I feel helpless. My identity is just dissolving away. I am isolated. I lost. I am lost. I don’t have any power anymore. I didn’t get to say goodbye. It was all pointless. I am a helpless victim. I didn’t find meaning in my life. I fell out of the healthy world. My family is in complete denial about this. Nothing is interesting anymore. I regret all the time I wasted. I was just getting to know (my wife, husband, etc.); now we won't have enough time. I don’t have the creative drive anymore. Everything takes so much effort. God isn’t answering me. Everything is heavy. I can’t go anywhere or do anything. I’m tired of trying. Anger There’s no justice! I’m not dead yet. I’m not in control anymore! Why me? What’s the use? I don't get any recognition for who I am. Page 101

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I have been betrayed. I was defeated. I have spiritual fear. I lost my power. I can't communicate. It's frustrating not having control. I don't want to move. No one told me I was dying. No one really cares. Okay, I know I'm going to die; let's just get it over with. I lost the contest. Bargaining This isn't where I'm supposed to be; change that and I will do what I am supposed to. I don't care, anywhere but here. I can't believe this, it's some kind of joke, Okay, joke's over. I've always had a second chance before. I can bargain with my enemy, make a truce. I know now that there was something special, okay, I've learned my lesson. My children are too young; just give me more time. Acceptance I will live more intensely. Every moment counts. It’s the little things that matter. Life is precious. You are welcome here. What can I do for you? I just want to be. That doesn’t bother me now. Don’t rush it. My worries didn’t matter. We don’t have to talk; we can sit in silence; it's okay. (The Labyrinth Reader's Society) Page 102

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To some extent, we will all face the mental round and round of non-acceptance of the clear reality of what simply is...and then we will experience the beauty of acceptance. This is normal for the death process. The day we receive a terminal prognosis we enter completely unknown territory. None of us want to die. To know that we are to die soon is to choicelessly confront our doubts, our fears, our deep attachments, and our own powerlessness. For most people, at first, all will be chaos as we twist and turn and attempt to come to terms with the end of our own lives. With an intensity and magnitude we cannot imagine beforehand, we will re-examine what we thought our life was about and who we thought ourselves to be. Dying itself softens us, opens us. In the course of living with terminal illness, our inner experience begins to change in nature. As our grasp loosens, we may begin to experience a more spontaneous forgiveness, a deepening love, and a pervasive sense of gratitude for the experience of life. (Singh, Dying As A Spiritual Event in http://www.caregiverslibrary.org/Default.aspx?tabid=311)

The job of a caregiver is to accompany his beloved through these transitions using presence and attention with the practices and tools outlined above, and, if applicable, the crisis bridge workshop techniques. In addition, it may help you to familiarize yourself with some traditional end of life practices and rituals that have aided many people for hundreds of years. We have included them in Appendix E.

Spiritual Care Rituals – traditional prescribed ways of moving through transitions – serve the spiritual needs of the dying on a very fundamental level. An example is the Christian Sacrament. Those of the Christian faith gain much support from it. The importance of spiritual belief systems became apparent to the medical world in the early 1990s when several studies showed that people have better medical outcomes if they have some spiritual orientation to carry them through an illness.

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A recent study of elderly patients undergoing elective cardiac surgery showed that lack of strength and comfort from religion was independently related to the risk of death during the six-month period following surgery. (Anandarajah, Spirituality and Medical Practice)

With the acceptance of this and other studies, it has become increasingly important for clinical professionals to make themselves aware of the spiritual needs of their patients with an eye to an improved recovery. Several “spiritual assessment” tools have been produced for clinicians. The FICA tool is probably the most widely used and is listed in Appendix D. At minimum, the most basic spiritual assessment will cover four content areas: Does “the patient” use religion or spirituality to help cope with illness or is it a source of stress, and how? Is the patient a member of a supportive spiritual community? Does the patient have any troubling spiritual questions or concerns? Does the patient have any spiritual beliefs that might influence medical care?(Koenig 22)

We would like to emphasize that even though patients with spiritual beliefs might have better medical outcomes, one thing is clear: you can't impose spiritual beliefs on another at the end of life and you can't do another's spiritual work. People in the last stages of life have the right to be accepted – totally accepted – for who they are. This applies particularly to their spiritual beliefs and choices. We have no business imposing our beliefs or thoughts. Our job as caregivers, family members and friends is not to convert, preach, evangelize or “reason with them” in any way whether overtly, covertly, obviously or ever-so-subtly. Instead, we as caregivers should practice just the opposite. We should be as receptive as possible and respect their spiritual beliefs and preferences. (Smith 169)

Stay present and mindful, but do not impose. This time holds real opportunity if you are receptive, balanced, and flexible. You are keeping an eye to serving your loved one's needs. Everyone involved will benefit from your efforts and experience their own moments of realization.

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Step 5 – Provide Spiritual Care & Support You've come a long way, baby! We now enter the final phase of the caregiver revolution where you fully develop your skills of being present with those who are dying. We hope that you are taking it slowly and that you've followed the progression through this book. Please continue working on the basics: organization, community, stress reduction and mindfulness. Strengthen your practice with the tools we've given you and you'll be ready to help those in crisis and transition!

Present And Accounted For There are no real changes you need to make in caring for those who are approaching the last stages of life. You follow their priorities. These might change, become more inwardly directed, quieter, more spiritual. It's your job to stay out of the way and be present. Work with the tools we have given you above. The dying are still very much alive. They may shift to a more spiritual orientation, but things are not that different. Page 105

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Dying is a transition where you hold the same presence and equanimity as in any transition. You know about presence and compassion and are the one who is “present and accounted for.” Staying present takes some work...as you are finding out, and caregiving gives you the perfect medium to practice. Just “being” with someone can have spiritual value. It means that the person is not alone. There is hope because there is togetherness. This mutuality in itself can communicate essential elements of spirituality simply by transforming the dread of abandonment and terror of isolation into hope. Don't force it. Some people want company...but not too close. Just knowing that someone is there in the home with them may be enough. So just let them know that you are there for them when they need you. Words are not always necessary. Silence an be more valuable at times than words. Simply being present can be a very spiritual experience. (Smith 175)

Simple Presence The foundation of spiritual care is simple presence. Sitting in simple presence is sharing a space with another person without the interference generated by social behavior or evasive actions. Sit with your loved one either while he is in bed, in a hospital room, or at home. The circumstances don't matter. Ideally you will be undisturbed for 5 minutes or so while practicing this. You can sit facing your care partner, alongside or even behind. Relax the body and your face. Now, let your eyes and vision relax – not focusing on any one thing in particular. We sometimes call this wide-screen or diffused vision. Try to keep your body, face and eyes relaxed and your vision diffused. Now, try to get into a one-pointed state of mind, not stressed, the chatter of the inner mind slowing down gradually. Intentionally divide your concentrated attention and place half of your attention on your partner and half on your own relaxed face. If this seems too hard, don't worry! Try it gently or just sit in simple relaxed presence with some awareness of your nearby loved one. Many types of phenomena may appear, but continue until you can easily be with your loved one without having to talk or dramatize social expressions and personality. Page 106

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This is an advanced exercise. Don't be discouraged if you can't do it. It usually takes many attempts before you can feel comfortable just sitting with another. Workshops devote several days to presenting this material, and you've just learned it in 5 minutes! This is a very valuable practice, the basis of your continuing work with those at the end of life. Break it into steps: position yourself, breathe and relax, soften the face, diffuse the vision and bring your attention to bear on both yourself and your partner. If we could continue an an analogy we started long ago; the builder of this advanced caregiving work is acceptance, the foundation is patience, the cornerstone is mindfulness and the structure itself is simple presence. Relaxation and humor keep it standing. You've done a lot of work to get here! Of course it hasn't come overnight, but if you've been using the practices listed above, it should be coming easier to you.

How To Be There Being with those who are dying is not a mystery. It is a most rewarding experience where you get to share the most honest moments with someone you love. Trust your ability to “hang in there” and you will find that it is a precious time. Don't Desert In being there with the patient, be open, simple and in the present. Listen with your heart, not your mind. There's often anger, denial and fear before acceptance of the inevitable. Open up to the possibility of the moment of death. There, in the change from form to formlessness, from here to not-here, from breath to not-breath, is the opportunity of eternity. With courage, your presence will assist the patient to make his or her own passage. Don't try to fix the pain. The key to dying is allowing oneself to relax. Embracing our natural fears of the unknown with acceptance and joy brings us through difficult moments, expanding our capacity to surrender and let go. Surrendering to the moment of death includes allowing pain and fear, but not giving in to panic. Focusing attention past the physical form replaces our eternal self to its natural priority. Permit the terminal patient to remember his or her essential being.

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The attention of the being is designed to carry through the transitions of death and birth. The state between death and birth for which our western culture has no words becomes visible to the terminal patient as passage approaches. The patient can prepare for transit, or the bardos, through development of the attention of the essential being. When the time comes for death and transition, the prepared Voyager (your loved one) can maintain his own sense of essential beingness with little or no panic. As you place your own attention of essential being on the essential being of another, you assist in the power of the other's voyage. Be sincere and constant. Being honest and speaking directly to the being helps maintain the voyager's connection to the purity and strength of their spiritual essence, enabling one to meet passage with serenity. Silence and stillness may be what the patient wishes. It isn't always necessary to be doing or talking; sometimes it is better to just “be still and know that I am God.” Finding in yourself that stillness will allow the truth to be stated easily and simply, if any words need to be spoken. Be A Terminal Midwife The experience between death and birth carries with it forgetfulness and ego disintegration. Someone who is not experienced at remaining attentive through death may feel very disoriented. Being there as a midwife is an act of compassion toward the being, assisting the voyager in remaining as conscious as possible through the ensuing unsettling transition. You are preparing your own self for dying by being with another who is dying. This is one of the most important aspects of being with those who are dying…they don't know any more about it than you do until you both learn from the process itself. Then you become more willing and able to help others face their own struggles and you may find yourself dealing with that which prevents you from always staying attentive to your essential being. This will bring you greater possibility of consciousness and greater awareness of the nature of death and dying. (From the Labyrinth Readers Society)

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Your Intention Is What Matters We already know that people who have a spiritual practice may have better medical outcomes than those who don't and that prayer can be effective in healing. By now the public is well aware that research on prayer has validated that it works. In a typical experiment, volunteers, usually from church groups, are asked to pray for sick people in the hospital. They do not visit the person and often have only a number rather than a name to go by. The prayer isn't specific; they are asked simply to pray for God's help. The results of such experiments have been startlingly positive. In the best known one, conducted at Duke University in North Carolina, patients who were prayed for recovered faster and with fewer side effects than those not prayed for. Here we have one more demonstration that we are all connected by the same field of consciousness. (Chopra 247)

Spiritual reading is different than prayer as we normally think of it, but it's similar in that a state of being is accessed where time and space have different characteristics than in normal day-to-day awareness. Modern physics has shown over and over again that everything, all parts, layers and aspects of reality are interconnected. All aspects of the reality spectrum are one, including the spaces that aren't normally available to our waking awareness. In reading, as in prayer and healing, you are transcending “normal” time and space. It's not a big deal. Just a different set of parameters. In the end, putting all theory and philosophical discussion aside, there's one simple thing we can say about all of these practices; your intention, your wanting to help, is the most important ingredient. It is conveyed in the prayer, the healing or the reading and is what makes them work. You don't have to be too concerned about your understanding of the details of a spiritual text or prayer. You don't need to know the stages of dying. Your loved one will get the message because you are putting a caring emotional resonance into it.

Spiritual Reading Bedside reading is viewed to have tremendous benefits because hearing instructions from a sacred text can keep us oriented to our spiritual practice as we make the transition of physical death. Page 109

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Spiritual reading is a very old practice, in use for over 800 years in the Tibetan culture and over 500 in the Christian. The practice of guiding the spiritual essence through its journey also exists in the Navaho, ancient Egyptian, pre-Colombian and many other cultures, but these forms do not generally appear as written texts. That's why we have chosen the models of the Tibetan and Christian texts because they are better known and have been assimilated by modern culture. The Christian Science books, the Book of Mormon, and, of course, the Holy Bible are other spiritual texts that are traditionally used during passing. Reading is effective for two reasons. Firstly, hearing is the last sense to fade as one passes from physical existence, and secondly, shortly before transition, and when passing through, the being has an all-encompassing clarity of vision and understanding.

Ars Moriendi In the Christian tradition, the Ars Moriendi, or “Art of Dying,” became hugely popular during the middle ages (14th and 15th centuries) around the time of the plague when death was rampant. The clergy had long used certain texts for their deathbed practices. When it became apparent that they would no longer be able to personally attend to the vast numbers of dying, their texts, their training manuals, were publicly issued. Soon they were widely used. These small texts generally consisted of a series of woodblock prints with instructions to be read by a family member or friend to the dying. The death bed was commonly believed to be surrounded by angels and demons. The instructions were clear – don’t avoid death, face it unafraid, defeat the evils of temptation which will certainly assail you, follow the way of Christ, and experience a good death. The Ars Moriendi teachings became incorporated into the modern Christian Liturgy. For example, the very popular 1855 English translation, Daily Hand-Book for Days of Rejoicing and of Sorrow drew directly from the Ars Moriendi Tradition. The book contains four major sections: prayers and hymns for the healthy, the afflicted, the sick, and the dying. As the fourth section seeks “a calm, gentle, rational and blissful end,” it adapts core themes from the Ars Moriendi tradition: the dying must consider God's judgment, forgive others and seek forgiveness, take leave of family and friends, Page 110

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commend themselves to God, and “resolve to die in Jesus Christ.” While demons no longer appear at the deathbed, the temptation to despair remains as the dying person's sins present themselves to “frighten, condemn, and accuse.” The familiar remedy of contrition and forgiveness through Christ's passion comforts the dying. Starck offers a rich compendium of “verses, texts and prayers” for bystanders to use in comforting the dying, and for the dying themselves. A confident, even joyful, approach to death dominates these prayers, as the dying person prays, “Lord Jesus, I die for thee, I live for thee, dead and living I am thine. Who dies thus, dies well.” (http://www.deathreference.com/ABi/Ars-Moriendi.html)

Tibetan Buddhist Teachings The Tibetan Buddhist teachings surrounding death and dying are comprehensive. They find expression in the Tibetan Book of the Dead, the Bardo Thodol, which can be described as such: The spiritual essence of a person survives the death transition and passes on to another birth according to his or her deep inclinations. During the between-lives journey, many different stages and qualities of experience occur, but if the inclinations (as developed in the lifetime) are relatively pure or if the being is guided properly by the readings from the book of the dead, the spiritual essence of the deceased can take favorable rebirth.

Facing Death Buddhists, like the early Christians, see death as something not to be avoided, but faced squarely and utilized to one’s spiritual benefit. This is a radical idea in today's western civilization which doesn't recognize the positive potential of the moment of death. If our culture did realize it, we would treat the dying process completely differently, with great care and respect. Bodies would be left untouched for at least several hours after the moment of death. Readers would be at the side of every death bed. When it is apparent that the end of life is approaching, instead of denying and cowering from death, face it and practice your particular spiritual discipline strongly. Celebrate your life at the same time with remembrance and joy. Help those around you Page 111

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and they in turn will help you in your transition. In whatever faith you choose, the spiritual readings will serve as your anchor and will be of great benefit. We will now show you step-by-step how to set up a reading, prayer or healing space where you can do this work. You have already learned the principles of simple presence. Apply them as you read. Remember, in the reading chamber there is no distance or time. You can do readings or prayers for anyone, alive or dead, no matter when or where they died. You can do readings for large numbers of people and on the sites of past tragedies. We hope that whatever you wish for becomes possible for you.

Ten Steps To Doing A Reading Doing a spiritual reading is straightforward. Here is an example of the practice that is generally used with either the Tibetan or American books of the dead. Any other spiritual text can be read in the same way. Using the simple presence practices given above, you establish contact with the being you are reading for and then you deliver the reading, as clearly and distinctly as you can. As you develop your practice of reading, a few guiding hints will come in very handy. Thus, we have provided ten simple steps that should help you perform a reading: 1. Confirm your intention to do a Reading. You may do this as an inner affirmation or perhaps simply state aloud: “Yes, doing this Reading for (insert name here) is something that I want to do.” Page 112

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2. Find a place to do the Reading. This should be a location where you will be undisturbed for fifteen to twenty minutes. This does not need to be a private space — just one where you will not be required to move or interact with others during the course of the Reading. 3. Assemble the few materials you will need for the Reading. Name (full) of the individual for whom you are Reading. (You may also wish to write birth date, time and location of passing on the same slip of paper.) Whatever text you are using Picture of the individual for whom you are reading Candle Stick incense Matches (box of wooden safety matches preferred) Bell Small bowl of water Small bowl of grain such as rice or barley Small empty dish (this will be used for the burnt match) 4. Prepare the Reading Space. Set up your altar table. A candle should be placed in the center of the table toward the back, leaving room for you to rest the book on the table. Place the photograph (if you have one) and the name on a slip of paper in front of the candle. Place the small bowl with rice to the right. Lay the stick incense to the right of the bowl of rice. Place the small bowl of water to the left of the candle. The small dish can be placed to the left and slightly in front of the water. This is where the burnt match will be placed. Place the box of matches in this dish. Each of the items on the altar are used to help create a reading space conducive to assist your focus on the Reading.

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5. Sit comfortably but attentively in your space. It is best to keep the back relatively straight with both feet placed on the floor at about shoulder-width apart. Relax the body – especially the facial mask. The relaxation of the facial muscles will bring about relaxation of the whole body. Take a few deep cleansing breaths. A cleansing breath can be performed by inhaling deeply through the nostrils, then exhaling sharply (without strain) through the mouth. Make sure that everything is at hand. You are ready to start the Reading. 6. Begin by establishing contact. Look at the picture. While the picture may begin as a proxy for the individual, very quickly you will establish a direct immediate contact, as if the individual is right there in the Reading Space with you. If you do not happen to have a photograph, do not worry. You may use a paper with the written name for focus. A photograph is much preferred, but in its absence, the individual's name on a slip of paper is an adequate substitute. 7. Open the Reading Space. Say aloud: “I wish for this effort to be used for the benefit of all beings everywhere.” Light the Reading candle. Light the stick of incense and stand it in the bowl of rice. Place the burnt match in the empty dish along with the box of matches. Ring the bell three times. After ringing the bell three times, speak the following aloud: “This Reading is addressed to the being of (insert name of individual here).” Read (once only) the “Obligatory Reader's Invocation”, or opening prayer. The space is now fully prepared for the Reading. 8. Deliver the appropriate Reading for that day. This may either be the Clear Light Reading or one of the Readings for the forty-nine days. This will depend upon Page 114

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where you are in the Reading cycle and which text you are using. There are three basic types of Readings. If you are doing a “Clear Light Reading” or “Sitting Vigil,” then the Reading will be “Confronting the Clear Light.” If, however, you are doing a Reading from the “The Forty-Nine Day Cycle,” then you will do the Reading scheduled for the day. Keep in mind that each day's Reading is performed twice – once in the morning and once in the evening. 9. Close the reading space. When the Reading is complete, declare: “This completes the reading of (insert name of Reading such as 'Clear Light') addressed to the being(s) of (insert name of individual here).” Ring the bell three times. Turn the stick incense upside-down in the bowl of rice to snuff it out. Gently snuff the candle flame. Wrap the photograph and the person's name in a piece of aluminum foil to be put away until the next Reading. Clear the altar items. Declare quietly: “I wish for the results of this reading to be used for the benefit of all beings everywhere.” 10. The space is closed and you are ready to resume your other activities. If you are keeping a journal or log of the Readings, now would be a good time to do some writing. As a final note, some people measure the success of a Reading in terms of the phenomena that happen during the Reading. These might be sights, sounds, feelings, sudden insights or realizations. These are just phenomena. Whether the room opens onto vast fields of illumination, or you hear celestial choirs, does not matter. All phenomena is illusion. Let the phenomena pass by you the way a bamboo lets the wind pass by. Concentrate on the simple things such as enunciation, focus of attention, relaxation of your facial mask, and reading each word without skipping. Keep it simple. Page 115

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Exercises And Activities To Help Prepare For Death The sections below will help if you find that your dying loved one wishes to engage in a more active preparation for death. You can help. The following exercises serve to extend and strengthen the work that you have already done.

A Modest Proposal The purpose of this process is to give some guidance to the caregiver if called upon to help the dying loved one in temporal matters. If you are working with an individual prior to his passing, your main goal is to help that person orient to the life of a voyager in the bardos. In some cases, it is appropriate to read some of the chambers with that individual, notably the Clear Light. This particular process helps the voyager begin to release a bit from temporal matters and relations, by seeing them in a new light. This may occur during the last phases of Page 116

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an illness, or it may be used and worked with cyclically with those individuals who realize early on that they are on a bardo voyage all the time. It creates a curious sense of transit to anyone who wishes to try the method and will come in very handy when he is actually passing. To get us started, we have included the traditional tool known as the Last Will and Testament.

The Last Will It may be helpful to organize your thinking about the “last will” as consisting of several distinctive sections. The Body The most important “thing” that the person must deal with is the body. What would you like done with it after your use of it has come to an end? Would you like the body to be buried, cremated, frozen solid, launched into space, or some other equally interesting choice (stuff it and go on with the party is not really a practical choice)? Is there some favorite piece of jewelry, wedding ring for example, that you would ask to be buried with? Do you have an outfit picked out or a costume you wish to wear? The exercise here is to be as specific as one can be. Write it down. You are giving instructions to someone other than yourself, which should be complete enough to help them carry out your suggestions. Be considerate of the family members that will be attempting to carry out your wishes. Things, etc. . . To start this process, it will be necessary to take a virtual (or actual) tour of your stuff. You will find that your things will fall into two or three categories: 1. The first category, and by far the largest, is those things that have no specific importance to you, or to others close to you. These things serve only for purposes of utility. They may be mundane – pots and pans, clothes, beds, cars, etc. Let those staying behind, for the moment, know what to do. They can be instructed to give the stuff away, throw the stuff away, or ??? The point is, the voyager will decide.

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2. The next category is things that may have little or no importance to you, but may have a known value to friends and family – you can direct these as gifts to those people. This is your will in action. 3. Some of our stuff is unique. It holds meaning in specific ways. It may be a tool that we have worked with intimately, or it may have been a gift from a person important to us. One example that will work for this group may be our altar items. These items may require thought. They may go to specific individuals who may be practiced in caring for such items. They may know how to “carry on the work” of the piece. There may be objects that have sentimental value – a gift from a mother or father – find why it is important, and you will know what to do with it. Pets This one is difficult. It seems to drive home the meaning and effects of terminus on those remaining behind for a while. For instance, you may have a pet turtle or anteater that you have grown close to over the years. Give it careful thought. In ancient Egypt, it wasn’t an issue – the pets went with the departed – along with the household staff. This may not work for you.

The Testament (A Last Word) This is a tough area. I have read many documents labeled the Last Will and Testament, only to find a full expression of the will of the person in disposing of their worldly goods. I have rarely seen a will, whereby the person drafting such a document actually gives a testament. We must be careful here. It is important not to drift into sentimentality. Hold the line and say what you actually would like to say. Here are a few guideposts: •

Preamble: Note that this process is not one whereby you are trying to educate or boast or prove anything whatsoever. This is your forum, your blank slate to speak. This is your party; you can do what you want to. The eventual reader may or may not like it, understand it, or even appreciate the results – the process of doing it is the goal.

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Heroes: You may have had heroes that you would like to acknowledge. That hero may be living, long dead, or they only show up in novel or poem. The acknowledgement is for you, not the heroes – they are already heroes.

•

Complaints: Keep it short, but you may have a thing or two to say here. Pretend you are lodging your complaint with God – or worse yet, Raphael, or one of those guys.

•

Aphorisms – These are thoughts that wind up being in simple memorable phrases, like:

Believe nothing you hear, and only half of what you see. — Mark Twain That which does not destroy us makes us stronger. — Friedrich Nietzsche You may have several of these – you find that you live by them. Sometimes they are hard to find. Others, your friends, who hear them all the time, may be a good source for these. •

Is there something that you would like to say to someone – but never could or did, or simply can’t imagine doing such? The person may be a wife, husband, daughter, son, parent, friend, boss/employer, enemy (see complaints above). Dig a bit on this one – give it your all – you are saying something about you, not them.

•

A well-lived life. There is a movie called Mi Familia – about a very poor Mexican family in L.A. They had many difficulties and trials. At the end, when all the kids were moved out, the father, a gardener, was sitting in the empty house with his wife and he says, “It’s been a good life.” She starts to comment, he stops her.

We came here – we chose this particular body, in this particular set of circumstances. We made our move, lived this life. Maybe you would like to say something about your well-lived life. This is NOT a comparison of any sort. Rather, it is a statement about your particular journey – a testament about you.

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Exercises For Death Preparation – The Workshop If you are interested in continuing with this work and becoming a death and dying “pro,” you will want to take the following workshop. This is a voluntary workshop. It is intended to help caregivers develop skills in their caregiver role in terminal situations, both in clinical hospice and home care environments. Please be aware that unlike most of the activities above, these exercises are addressed to the participants directly. We have found that people are more easily able to help others confront their fears around dying if they have addressed some of those same issues first in themselves. Hence, the first person language and modality for all the following exercises and supporting books, films, and so on. We hope that this becomes clear as you proceed with them. If you practice the exercise a bit yourself, not only do you make discoveries, but you can present it to others. That is our wish here. As with all the suggestions in this book, we are offering everything that we think will be of value. Anything that doesn't appeal to you, seems too hard or doesn't meet your needs, just skip it and move on. There are lots of exercises here and you will most certainly discover several that you enjoy doing!

How To Approach This Material In many ways, preparing for death is just like any other exercise. You decide to do it and you find a way to go about it. As always, the important part is in the doing. An Page 120

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ounce of practice is worth a pound of theory. In any exercise, like running or drawing, with practice, the physical and mental abilities naturally get stronger. You put in some effort now, but you are preparing for later. It is not a furrowed-brow type of effort, but something which should be done in a relaxed way and enjoyed. Consistency of practice is the most important factor. Do a small thing every day. Spend just 5 or 10 minutes, but try to do it every day. Children have a natural, playful and spontaneous way of approaching life's events. Remember when you were a kid and pretended to be grown up and acted out the various parts in “Play House,” “Be the Teacher,” or other pretend games? This is the same style of exploration, the full-bodied wonderment of a child with a complete absence of judgment, that we want to bring to our practices and explorations about death. A moment of wonder prepares you for anything. This chapter contains practical exercises, theoretical exercises and lists – just to help you move along in the process. These exercises are designed to help you progress easily through your and your loved one's preparations. They are intended to gradually increase your level of understanding and involvement and provide you with a simple way to share the process with others. The exercises are best done in the order presented. If you are unwilling to engage in a certain “pretend” activity, there are alternate choices. Remember: How do you get to Carnegie Hall? Practice, Practice, Practice. When you complete this chapter, you might want to share it with your family, friends and health practitioners in order to create a common understanding as to what you and your loved one wish for in your own time of dying. You will notice that the chapter sequence allows a gradual widening of the circle of acquaintances and loved ones who become involved in your preparation. We wish for you the best that you would wish for yourself and others, and hope that in your preparations you will live a long and happy life.

Exercise 1: Telling Another About Your Preparations For Dying Most people don’t spend any part of their lives deliberately preparing for death. There is nothing that is more certain to occur, but it is the least-prepared-for-event in Western Culture. If we compare it to marriage, which has the highest preparation, we can see that children begin to prepare very early with “dress up,” going through the Page 121

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ceremonies, and pretending to be “Mommy and Daddy.” By the time they really are parents, they have play-acted the situation many times. Familiarity through “acting out” all human events is common with every culture. Sometimes children pretend to play dead. Usually adults get too upset to allow that, so children don’t learn how to deal with death in an easy and natural way. As adults we have no way of dealing with it. Now we will allow ourselves to play-act in this arena that we may not have been allowed to as kids. Try each of the following scenes with as much compassion and energy for yourself as you can muster, and be delighted at how well you can do. Telling Others About Your Preparations for Dying The first aspect of your death that we want to consider are your concerns for your loved ones, friends and family. Of course, you know that the process of dying and your actual death will affect others profoundly. Your friends might be fearful or anxious about your death and you may feel concern about their reactions. In terms of a peaceful passage, this could hold you back. Preparing for your death now gives you the opportunity to bring the subject up, share these concerns, and present your point of view. It is a great way to clear the air and make sure that things are going smoothly as you draw closer to your time of passing. If you are not comfortable talking to others about yourself, you may have problems taking advantage of this valuable opportunity. Here's a hint: Looking at the effect that your death will have on others allows you to get a wider view of the effects that you cause in general, and, surprisingly, what influences you are vulnerable to. Recommended Book: Tuesdays with Morrie, by Mitch Albom, and the movie: Little Women Scene One The Birth: Imagine that you are your own mother or father, and that a new baby, you, has just been conceived. You, as the future parent, are happy, surprised and pleased. You can’t wait to tell your family and friends the good news. “We’re expecting.” or “I’m pregnant,” or “We’re going to be a family soon.” Tell yourself this good news.

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Use whatever expression best signifies this event to you. Acting as your own mother or father, delight yourself that your baby, you, has been conceived. Imagine the thrill. Put yourself completely in the shoes of your parents when they discovered this fact. Don’t worry if you know that this news was not well-received at the time. Be happy now and give the news to yourself as you would like it to have been given. In other words, make sure that you are NOW delivering good news....“Hey, I just got pregnant with...........(fill in your name).” You are looking forward to this. This experience is what you are ready for. You are glad that you are bringing a child into the world, and especially that it is going to be this unique child...this YOU. When you can envision this scene so completely that you actually feel glad that you are born, then go to the next step. Scene Two Scan through your life from the moment of your conception through to the present moment. Scanning involves the sweeping overview of a very wide-angle lens. Try to scan as one complete breath from conception to present moment. Look for those individuals or events which have influenced you. Take as long as necessary to do this. Write them down if you wish. Require yourself to acknowledge completely the influences, good and bad, as you have experienced them. Rather than critique your life, simply look for the “blip” line in the continuum. Relish and savor the impact on you even now. See how you responded to the influence, what significance it had for you then and now. Discover, if you can, whether they know the effect they were having on you at the time. Ask yourself the question: “Did they know what they were doing or was it just circumstance?” When you have allowed yourself a thorough look through your life, gather this evidence. Gathering evidence can be seen as analogous to the sorting, filing and boxing one might do in the house of a beloved relative after her passing when it’s necessary to remove all the material left behind. Some serious cherishing will go on. Even particular items of note may be given or suggested for family members (i.e., “Would you like Aunt Mary's silver tea set? I'm sure she would be happy for you to have it”.) The process is to get the job done. Along the way you will have plenty of opportunity to hold yourself separate from it.

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You are not those impressions, effects and significances. You were influenced by them and you can evaluate them. Do not go to Scene 3 until you are thoroughly satisfied that you have completed this step. Recommended Movie: Steambath Scene Three Acknowledge to yourself that you, in a similar way, have had an effect on others. This effect may have been conscious or unconscious on your part. That doesn't matter at this time. Simply acknowledge that there has been an effect from your passage through life. Now, knowing that you created an effect with your life, imagine what the effect will be from your death (imagine what effect your death will have on those around you). Look at every person who is in your immediate circle and reflect on their reaction and response to your dying. When you have completed the review of your immediate circle, then begin on the larger circle around you. Be diligent in reviewing every individual’s response separately, not lumping them all together. Use your past history with each person, your understanding of their reactions, your own imagination and the freedom of a playacting child to perform this exercise with joy and abandon. Do not fall prey to grieving for yourself at this moment. The assignment is to look at the other individual’s response to your dying. After you have created all the imaginary responses to each situation that you can think of (and this scene can be returned to many times over the next few months), then you are ready for the next step. Recommended Movie: It’s A Wonderful Life Scene Four Decide that you will share the fact of your preparation for dying with another individual. Choose that individual. Set up a time to discuss with him or her in detail why you have decided to make preparations, what your preparations consist of so far, (if you have a will, power of attorney, etc.) and how you would like him or her to help you. The more specific you can be, the better. Find out if that person has ever done this before and how it went. Give the other person time to absorb what you are saying and make a time to review again in another week or so. Page 124

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Scene Five Now that you are committed to preparing for your eventual death, set up a schedule so that you and your friend can get together to work on the remaining 2-person exercises in this book and the other activities such as viewing movies, and so on. This completes the first exercise. So far, so good. Let's move on. You can pick and choose from the following as you like, but please realize that these exercises do build on each other.

Exercise 2: Those Things I Wish For Right Now Make a list. Be as explicit and as honest as you can. Include those things you have never spoken aloud, but have dreamed in your secret heart. Leave out nothing that is a real wish for you. Be ruthless with yourself in your list-making. Allow the time necessary to complete the list you are working on in one sitting. Don’t rush through the process just to get it done — take your time. If it helps, here is another hint: you are doing for yourself and others at this moment — so be thorough and resolute.

Exercise 3: Knowing My Roots We will now discover what deeper histories are lurking in your past. Gather the evidence of religious training, education or experience in your life and in the life of your immediate family. If possible, look back two generations...your parents and grandparents. Using Exercise Three, Knowing My Roots, discover what is currently relevant and useful for you and what has been discarded along the way. Take care to allow a gentle touch in discarding. Some portions of any particular practice or experience may be helpful. Zen philosophy uses the technique of “Not this, Not That” (mentioned above) for this type of questioning. Another way of putting it is: “Neither attracted nor repelled.” See if you can review the belief structures of your own and your family's lives from the objective view that you do not have to pass judgment on their correctness, but simply see if they fit and how they describe you. Take the point of view of the child banker in monopoly who lays out all the banknotes on the table, stacking them according to color and size, which has nothing to do with their value. All denominations are equal.

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Describe your cellular DNA. as it has been passed to you from your parents and grandparents. Look at what flows in your veins that came directly from your father or mother. What impressions do you have of “lineage” bloodlines, and the like? What do you know for certain occurred in your life that directly originated from the particular combination of the cells that happened upon your conception? Where does your present form of consciousness stem from? Look at each relative in turn and see what influence or fragment of genetic structure you can decipher in yourself. Use the attitude of Sherlock Holmes to deduce from what is right in front of you. Share this exercise with your friend, just the exercise itself, not the results of it for you. The purpose here is to delve into what you think is “you” and what you think is “not you” based on your genetic structure. Leave the question of your experiences out of the picture for the moment as best you can. Preparation: Ancient Cells Using your attention and awareness on your physical form, allow the perception to occur that your cells are in a direct link with all other cells that have come through your family, even back as far as there have been family members that you either knew or didn’t know about. Spend some time daily putting your attention on the continuous living ancestry of your cells. There are no specific conclusions or objectives to be drawn from this preparation, simply the use of your own attention and awareness on the level of existence that you are still experiencing in your physical form. Recommended Preparation: The Purloined Letter by Edgar Allan Poe.

Exercise 4: Forgiveness When you are ready to continue, begin the exercise of creating an ongoing list. Make a list of those things for which you wish forgiveness...not in the sense that you need to ask forgiveness, but in the sense that if those things are still a deep part of your nature, you could see them being passed along through your cells to the next generation, and it isn’t necessary or desirable for that to occur. Examples of such items might be: •

I wish that the tendency for dramatic overreaction to simple situations will not be carried forth.

•

I wish that the women in the family won’t continue to dominate the men.

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I wish that the will to go forth in the world and learn and do from an individual standpoint not relying on old patterns will be strengthened.

Make up your own list in a way that is suitable for you. Remember it originates from the review of the family history and the experiences with perception of the cells. Don’t draw conclusions and create the list if there is nothing to put into it. Over time allow it to develop on its own.

Exercise 5: Imagining The Moment Of Death We’re going to use our imaginations again to create various scenarios for the moments of our deaths. We can take a time when we've had a bad nightmare, trauma, an accident, a near-death experience or any other time when we felt as if we had nothing to stand on, no ground under our feet. This is a moment in which we lost all of our reference points. If you can't remember a time like that in your life, you can use the imagination to create one and then allow yourself to be in that moment as if it were now. You will need the assistance of your friend to help you relate very specifically to what is happening. Have your friend ask the questions: 1. Where am I? 2. What time of day or night is it? 3. What age am I? 4. Am I alone or with others? 5. Describe the circumstances, drowning, heart attack, poisoning, dying in sleep ... whatever you can remember about the situation. 6. Describe your physical and mental sensations. Your friend will assist you in setting the scene. Once you have answered the previous questions with as much detail and imagination as you can bring to it, then develop out the scenario as if it were a little skit or a one-act play – include the set, the setting, and the characters. It's almost as if you are a script writer developing various endings for the movie. Save your list and we might use it later. Page 127

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Practice this exercise using as much imagination as possible. Picturing the Moment of Your Death Many times we will watch a movie, hear a song, read a poem or a story that describes the death of a character. In the portrayal there may be a romanticized version of a death scene that is appealing to you or frightening to you. Using the prompt from one of the suggested lists of scenarios that you just created, we will be exploring the fantasy that you might concoct for your own death scene. Please do this in the spirit of fun and delight. Mock it up with good humor. Create a funeral scene or a graveside scene as well, if you so desire. The spirit of the inquiry is what is best served here, allowing yourself to touch on various themes you might not otherwise approach. Have fun. The Cardboard Cutout Using crayon, or some drawing utensils, put yourself at the moment of your death and draw or write what is happening. Include all the details that you can manage. Show this to your friend that you are working with and get him or her to help you elucidate more of the flavor of the details. Search for specific relationships that will be touched upon at the scene, for instance, members of your family or friends that you will imagine being there with you. Try to give the surroundings, the circumstances, the setting, the mood. Try to assess the nature of the demise, the age, and so on.

Exercise 6: You Decide What Is A Good Death Contrary to all the books in the marketplace, there are only 3 criteria which I hold to be important for a good death – Certainty, Serenity and No Regrets. These come from the experience of preparing for anything – a dinner party, a marriage, a high school exam. Certainty Certainty is based on the fact that you are prepared. Like a kid in a spelling bee – you know the words. Obviously you cannot know what is ahead for you in the adventure of death. Contrary to many of the more popular texts, the best you can hope for is that

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from now on, once you have made the decision to “get ready” until your last breath, you will do those things which will allow you to be prepared as best you know how. Preparation for Certainty Everything taken care of, no loose ends, everything buttoned up. See section above, A Modest Proposal. Serenity Serenity comes from answering the following questions: Did anything happen that wasn’t okay? Was anything done or said that shouldn’t have been done or said? Was anything not done or said that should have been? Is there anything you would like to ask or say before we complete this lifetime?

No Regrets Also, the question that our friend usually likes to ask pregnant women as they go into the most intense period of their labor: “Are you sure you want to go through with this?” It’s not that you could actually decide at that moment not to go ahead. The process is already in motion; it is asking if you are willing. It causes you to examine your attitude to the situation, like Baron Von Münchhausen who always yells, “No Doctors, No Doctors!!!” when he is close to death. He lives his life with no regrets. He is always ready for death in the moment. He doesn’t need to be recalled from death to complete his life in a better way.

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Planning The End Of Life Celebration As you gain acceptance and get more comfortable with your own death, you may want to start planning your or your loved one's end of life celebration. It is a ceremony that lets you say goodbye. It's actually an act of compassion for those around you. Everything is taken care of – all the arrangements have been made as per your work with the modest proposal above. In planning the ceremony, you may discover things that you have left unfinished, so this is your chance to clear them up now and celebrate your efforts. End of Life Celebrations are put in place like a wedding planner organizes a wedding. The idea is to celebrate a person's life by honoring all that was important to him, with details becoming as elaborate as one's imagination will take them. There can be a theme, a play, a dance, a musical or concert, a costume party, a reading, etc. There might be someone who has put together a video presentation of the person's life or some other artistic endeavor to represent the person's life and memory. Maybe the person enjoyed some particular food, scent, sound, color or image that can be included in the event. Perhaps that person loved a particular actor, car, flower. Maybe they had an impressive career that they would like to honor. The venue can be representative of that particular love: a garden, a park, a church, the vet center, a special building or museum. The point is that this celebration would be an experience for those attending, where the life of the deceased would be honored and celebrated rather than just strictly mourned. For some who find themselves at the end of life, it is possible that they would like to have this end of life celebration before they die so that they can attend. This is always an option. Or, if the person does not wish to attend while living, he may wish to participate in the planning of it, like he would a funeral. This particular dialogue can be very heart-warming and helpful to all involved, as they face the letting go of a loved one. Although there is obvious sadness in the notion of losing a loved one, there can be joy, laughter, storytelling and reflection — all part of the actual planning and implementation of the celebration itself. The details of the planning are important. The end of life planner needs to organize every aspect of the celebration: from the venue to the table settings, napkins, nut cups and, of course, the menu. There will be the guest list and seating arrangements and the sequence of events for the celebration. The particular events can be as elaborate or as Page 130

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simple as the family wishes and are likely to reflect the style in which the honoree lived his or her life. This requires that the EOL (End of Life) planner research the deceased's life and get “a feel” for what that life represented and what was important to that person. The feel of the event, the mood, the activities themselves will all represent the various aspects of the person's life that he or she would enjoy if attending the event. The target audience will be those people who felt they actually lived a life worth celebrating. It is important in the celebration planning to get to know what the deceased loved and enjoyed in life, and then with imagination, begin to create a celebration that is the image of those things. The family can choose to participate as little or as much in the planning as they wish. Sometimes it is nice for them to not have to deal with the planning of the details in their grief, and a good EOL planner can relieve many worries. The EOL planner is like a guide for the family in creating a special and memorable celebration, walking them through the details of the celebration itself, which is guided by learning about the important details of the person's life that is being celebrated. It is a community event, pulling together the loved ones of the deceased as well as the larger community – for those who knew the deceased and those merchants in the community that offer services for floral arrangements, catering, ice sculptures, the local musical group, clothing stores, etc. An EOL Celebration requires as much community effort as a wedding and can have the same joyous impact and effort. Certainly if religious or spiritual practices are important, there should be inclusion of those rituals and/or practitioners. The EOL celebration is different than a funeral. It is a celebration that reflects the person's life through all venues of expression that can be imagined. With a wedding, all emotions are felt and good wishes for the newlyweds are expressed. With an EOL celebration, good wishes for the deceased are offered for their life and their journey on, beyond this world.

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Appendix A: Bibliography Ademac, C. The Unofficial Guide to Eldercare. New York: Macmillan General Reference USA, 1999. Ahronheim, Judith and Weber, Doron. Final Passages: Positive Choices for the Dying and Their Loved Ones. New York: Simon & Schuster, 1992. Anandarajah, Gowri, M.D., and Hight, Ellen, M.D., M.P.H, “Spirituality and Medical

Practice: Using the HOPE Questions as a Practical Tool for Spiritual Assessment.” Am Fam Physician. 2001 Jan 1, 63(1): 81-89. Angelo, Jack. Hands-on Healing: A Practical Guide to Channeling Your Healing Energies. Rochester, VT: Healing Arts Press, 1997. Aries, Philip. The Hour of Our Death. New York: Oxford Press, 1981. Barg, Gary, ed., The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still have a Life of Your Own. Sterling, VA: Capital Books, 2001. Bell, Karen Whitley. Living at the End of Life. New York: Sterling Publishing, 2010. Benson, Herbert. The Relaxation Response. New York: Avon Books, 1975. Berman, Clair. Caring for Yourself while Caring for your Aging Parents: How to Help, How to Survive. New York: Henry Holt, 1996. Berzoff, Joan, and Silverman, Phyllis R. Living with Dying: A Handbook for End-of-Life Healthcare Practitioners. New York: Columbia University Press, 2004. Black, Kathy and Elkins, Heather Murray, ed. Wising Up: Ritual Resources for Women of Faith in their Journey of Aging. Eugene, OR: Wipf & Stock, 2010. Blackman, Sushila. Graceful Exits: How Great Beings Die. Boston: Shambhala, 1997. Blair, Steven, et al. Active Living Every Day. Champagne, IL: Human Kinetics, 2001. Boerstler, Richard W. Ph.D., and Kornfeld, Hulen S., R.N. Life to Death: Harmonizing the Transition: A Holistic and Meditative Approach for Caregivers and the Dying. Rochester, Vermont: Healing Arts Press, 1997. Page 132

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Bonifonte, Philip. T'ai Chi for Seniors. Franklin Lakes, NJ: The Career Press, 2004. Brandt, Avrene. Caregiver's Reprieve: A Guide to Emotional Survival When You're Caring for Someone You Love. San Luis Obispo, CA: Impact Publishers, 1998. Byock, Ira. Dying Well: Peace and Possibilities at the End of Life. New York: Riverhead Books, 1997. Callanan, Maggie and Kelley, Patricia. Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying. New York: Poseidon Press, 1992. Cason, Ann. Circles of Care: How to Set Up Quality Home Care for our Elders. Boston: Shambhala, 2001. Chokyi Nyima Rinpoche and Shlim, David R. Medicine & Compassion; A Tibetan Lama's Guidance for Caregivers. Boston: Wisdom Publications, 2006. Chodron, Pema. The Places That Scare You: A Guide to Fearlessness in Difficult Times. Boston: Shambhala Publications, 2001. Chopra, Deepak. Life After Death; The Burden of Proof. New York: Three Rivers Press, 2006. Coberly, Margaret. Sacred Passage; How to Provide Fearless, Compassionate Care for the Dying. Boulder: Shambala, 2002. Cochran, Patricia. Last Rights: Taking Care with Your Final Journey. Sterling, VA: Capital Books, 2000. Colmer, Rebeccca, and Caswell, Regina. Instant Caregiver Kit. Chelsea, MI: Eklektika Press, 2009. Corr, Charles A., and Donna M. Nabe, Clyde. Death and Dying, Life and Living. Belmont, CA: Wadsworth, 2009. Dalai Lama XIV and Hopkins, Jeffrey. Advice on Dying and Living a Better Life. New York: Atria Books, 2002. Davis, Martha; Robbins-Eshelman, Elizabeth, and MacKay, Matthew. The Relaxation and Stress Reduction Workbook. Oakland, CA: New Harbinger, 2008. Davis, Susan. After I'm Gone. New York: Gotham Books, 2009.

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Doka, Kenneth J. Living with Life-Threatening Illness: A Guide for Patients, Their Families, and Caregivers. New York: Lexington, 1993. Dossey, Larry. Prayer is Good Medicine. San Francisco: Harper San Francisco, 1996. Driver, Tom. The Magic of Ritual. San Francisco: Harper San Francisco, 1992. Easwaren, Eknath. Passage Meditation: Bringing the Deep Wisdom of the Heart into Daily Life. Berkeley, CA: Blue Mountain Center, 2008. Elias, Norbert. The Loneliness of the Dying. New York: Basil Blackwell, 1985. Epstein, Mark. Going on Being. NY: Broadway Books, 2001. Foos Graber, Anya. Deathing; An Intelligent Alternative for the Final Moments of Life. New York: Nicolas-Hays Inc. (Samuel Weiser), 1989. Freemantle, Francesca. Luminous Emptiness: Understanding the Tibetan Book of the Dead. Boulder, CO: Shambala Publishers, 2003. Freemantle, Francesca and Trungpa, Chogyam, trans. The Tibetan Book of the Dead. Boston: Shambhala, 2000. Freke, Timothy. In the Light of Death: Spiritual Insight to Help You Live with Death and Bereavement. Hauppage, N.Y: Barron's, 2002. Furman, Joan and McNabb, David. The Dying Time; Practical Wisdom for the Dying and Their Caregivers. New York: Bell Tower Press, 1997. Garland, Jeff and Christina. Life Review in Health and Social Care: A Practitioner's Guide. Philadelphia: Taylor and Francis, 2005. Gleckman, Howard. “Why $75-a-day Matters to Caregivers.” Kaiser Health News December 2009. (http://www.kaiserhealthnews.org/Columns/2009/December/121409Gleckman.aspx) Godfrey, Charles, M.D. and Feldman, Michael. The Ageless Exercise Plan: A Complete Guide to Fitness After Fifty. New York: McGraw Hill, 1984. Gold, E.J. The American Book of the Dead. Nevada City, CA: Gateways Books, 2005. Gold, E.J. Angels Healing Journey. Nevada City, CA: Gateways Books, 1997.

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Gold, E.J. Practical Work on Self. Nevada City, CA: Gateways Books, 1989. Grof, Stanislav. Books of the Dead: Manuals for Living and Dying. London: Thames and Hudson, 1994. Grof, Stanislav and Christine. Beyond Death; The Gates of Consciousness. London: Thames and Hudson, 1980. Grollman, Ira. Concerning Death: A Practical Guide for the Living. Boston: Beacon Press, 1974. Halifax, Joan. Being With Dying; Cultivating Compassion and Fearlessness in the Presence of Death. Boston: Shambhala, 2008. Hennezel, Marie de. Intimate Death: How the Dying Teach Us How to Live. New York: Random House, 1998. Hickman, Tom. Death: A User's Guide. New York: Delta Trade Paperbacks, 2002. Horne, Jo. Caregiving: Helping an Aging Loved One. New York: Washington, DC, 1986. Jahnke, Roger. The Healer Within: Using Traditional Chinese Techniques to Release Your Body's Own Medicine. New York: Harper One, 1998. Johnson, Mark. Tai Chi for Seniors. Publishers Choice Video, NY, NY 10001 Kabat-Zinn, Jon. Full Catastrophe Living. New York: Dell Publishing, 1990. Kaminsky, Marc. Uses of Reminiscence: New Ways of Working With Older Adults. London: Routledge, 1984. Kessler, David. The Needs of the Dying; A Guide to Bringing Hope, Comfort and Love to Life's Final Chapter. San Francisco: Harper, 2000. Klein, Allen. The Healing Power of Humor: Techniques for Getting through Loss,

Setbacks, Upsets, Disappointments, Difficulties, Trials, Tribulations, and All That Not-so-Funny Stuff. Los Angeles: J.P. Tarcher, 1989. Koenig, Harold, M.D. Spirituality in Patient Care: Why, How, When, and What. New York: Templeton Foundation Press, 2003. Kornfield, Jack. A Path with Heart: A Guide Through the Perils and Promises of Spiritual Life. New York: Bantam 1993. Page 135

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Kraftsow, Gary. Yoga for Transformation: Ancient Teachings and Practices for Healing the Body, Mind, and Heart. New York: Penguin Books, 2002. Kubler-Ross, Elisabeth. On Death and Dying. New York: Macmillan, 1969. Kubler-Ross, Elisabeth. On Life After Death. Berkeley, CA: Celestial Arts, 2004. Kuhl, David, M.D. What Dying People Want: Practical Wisdom for the End of Life. New York: PublicAffairs™, 2002. Leith, Larry M. Exercising Your Way to Better Mental Health. Morgantown, WV: Fitness Information Technology, 1998. Levine, Stephen and Ondrea. Who Dies? New York: Anchor Books, 1989. Longaker Christine. Facing Death and Finding Hope. New York: Broadway Books Doubleday/Random House, 1997. Loverde, Joy. Complete Eldercare Planner: Where to Start, Which Questions to Ask, and How to Find Help. New York: Times Books, 2000. Lynn, Joanne and Harrold, Joan. Handbook for Mortals: Guidance for People Facing Serious Illness. New York: Oxford, 1999. MacLean, Helene. Caring for your Parents. Garden City, NY: Dolphin, 1987. Mitford, Jessica. The American Way of Death. New York: Random House, 2000. Nissenboim, Sylvia and Vroman, Christine. The Positive Interactions Program of Activities for People with Alzheimer's Disease. Baltimore: Professions Press, 2000. Nuland, Serwin B. How We Die: Reflections on Life's Final Chapter. New York: Alfred A. Knopf, 1994. O'Brien, Maryellen. Living Well & Dying Well: A Sacramental View of Life and Death. Franklin, WI: Sheed and Ward, 2001. O'Dell, Carol. Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir. Kunati Press, 2007. Olshevski, Jodi, Katz, Ann and Knight, Bob. Stress Reduction for Caregivers. Ann Arbor, MI: Braun-Brumfield, 1999. Perry, Angela. The AMA Guide to Home Caregiving. New York: Wiley and Sons, 2001. Page 136

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Quill, Timothy. Caring for Patients at the End of Life: Facing an Uncertain Future Together. London: Oxford University Press, 2001. Quill, Timothy. A Midwife Through the Dying Process. Baltimore: Johns Hopkins Press, 1996. Richards, Larry. Death and a Caring Community. Oregon: Multnomah Press, 1980. Richards, Martha. Caresharing: A Reciprocal Approach to Caregiving and Care Receiving in the Complexities of Aging, Illness or Disablility. Woodstock, Vermont: Skylight Paths Publishing, 2009. Rinpoche, Sogyal. The Tibetan Book of Living and Dying. San Francisco: Harper, 1992. Samples, Pat. Daily Comforts for Caregivers. Minneapolis, MN: Fairview Press, 1999. Schmall, Vicki and Stiehl, Ruth. Coping with Caregiving – How to Manage Stress When Caring For Older Relatives. Online brochure. Oregon State University, Extension & Station Communications, 2003. http://extension.oregonstate.edu/catalog/pdf/pnw/pnw315.pdf Singh, Kathleen Dowling, Ph.D. The Grace in Dying: How We Are Transformed Spiritually As We Die. New York: Harper Collins, 1998. Singh. Dying As A Spiritual Event Educational Broadcasting Corporation/Public Affairs Television Inc. http://www.caregiverslibrary.org/Default.aspx?tabid=311 Smith, Douglas C. Caregiving: Hospice-Proven Techniques for Healing Body and Soul. New York: Macmillan USA, 1997. Smith, Rodney B. Lessons from the Dying. Somerville, MA: Wisdom Publications, 1998. Staume, David. The Beginner's Guide for the Recently Deceased: A Comprehensive Travel Guide to the Only Inevitable Destination. St. Paul: Llewellyn Publications, 2004. Stone, Ganga. Start the Conversation: The Book About Death You Were Hoping to Find. New York: Warner Books, 1997. Thurman, Robert, trans. The Tibetan Book of the Dead. New York: Bantam, 1994. Tisserand, Robert B. The Art of Aromatherapy. Rochester, VT: Healing Arts Press, 1977. Volkan, Vamik D. and Zintl, Elizabeth. Life After Loss: The Lessons of Grief. New York: Collier, 1994. Page 137

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Weiss, Andrew. Beginning Mindfulness: Learning the Way of Awareness. Novato, CA: New World Library, 2004. Witrogen Mcleod, Beth. Caregiving: The Spiritual Journey of Love, Loss, and Renewal. New York: Wiley and Sons, 1999. Yoder, Greg. Companioning the Dying: A Soulful Guide for Caregivers. Fort Collins: Companion Press, 2005.

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Appendix B: Websites For Caregivers There are hundreds of websites for caregivers; many with good resources, forums, chat rooms or message boards. Some are strong in one area but not in another. So we’ve distilled the list to find some of the best. New websites pop up everyday, so don’t feel that you should be confined to this list. Once you get the hang of it, you can explore and you'll be able to tell which ones will best serve your needs. http://www.thecaregiverwebsite.com – website of the caregiver revolution where we keep you updated on tools and tips for caregiver zen, stress relief, humor, links, reviews and exercise/relaxation videos. http://www.caregiving.com – one of the better sites for community with excellent discussion groups, blogs and support for caregivers http://caregiver.org/ – Family Caregiver Alliance in SF, lots of information but you have to dig around and explore http://nfcacares.org/ – good-all around non-profit site, but again, you have to dig http://americanheart.org/presenter.jhtml?identifier=3039829 – excellent, has an online journal and other good resources http://www.nlm.nih.gov/medlineplus/caregivers.html – factual, a good resource, you can sign up for email newsletters on any health related topic http://www.caring.com – comprehensive, somewhat commercial http://www.caregiverstress.com – also a bit commercial, but user friendly http://www.caregiver.com/ – good, friendly, has newsletter http://caregivershome.com/ – a good site sponsored by a publisher with a newsletter… it has a good “ask an expert” section http://familycaregiving101.org/ – good-all around site with message board http://www.thefamilycaregiver.org – see NFCA site above Page 139

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http://www.growthhouse.org – comprehensive death and dying resource http://www.spiritualityandpractice.com/ – very interesting, lots of information and approaches to spirituality http://www.womenshealth.gov/faq/caregiver-stress.cfm – good page about stress http://www.strengthforcaring.com – connecting caregivers http://www.dshs.wa.gov/pdf/Publications/22-277.pdf – Family Caregiver Handbook, worth downloading! www.carolodell.wordpress.com – Carol O’Dell’s site http://www.nia.nih.gov/HealthInformation/Publications/ExerciseGuide/ – a free online book about exercise – very well done, easy to read. http://www.netofcare.org/ – a good site about caregiving https://www.medicare.gov/caregivers/ – a very good site, one of the most important, full of resources http://www.ahrq.gov/consumer/healthy.html – the Staying Healthy page, informative http://www.chcr.brown.edu/pcoc/Spirit.htm – this is the Toolkit of Instruments to Measure End of Life Care – meant primarily for the professional caregiver. http://alzonline.phhp.ufl.edu/ – Alzheimers caregiver support online. Looks very good; has conversations, reading room. Be sure to visit the Skill Building sections. http://www.caregiverslibrary.org/ – the caregivers resources is a good section http://www.theclearlight.com – request prayers and readings for those in transition

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Appendix C: Supplementary Exercises Videos showing all the following exercises as well as the ones described in the book can be found at www.thecaregiverwebsite.com

Simple And Effective Yoga-based Stretches By Mary Pierangelli DISCLAIMER: As with any physical activity — please check with your doctor or medical care practitioner to confirm that you are in a condition to perform these or any physical or breathing exercises. The information here is not intended as a substitute for the advice of physicians or other qualified health professionals. It is not intended to be prescriptive for any ailment or condition of the reader. Neither the authors nor the publisher shall be liable or responsible for any loss, injury or damage allegedly arising from the use of any information contained in this book. Before performing each of these exercises, please read all of the instructions first. Always work up to your “edge” (that point where you begin to feel resistance) and not beyond. Preceding these stretches, sit quietly in a chair, or on the floor, in a comfortable crosslegged position. Gently close your eyes and begin to focus on your breath: notice the inhale and the exhale and the slight pause in between. Notice whether the breath is deep or shallow, whether it comes frequently or slowly. (Pause) Listen to your heartbeat; notice whether the heart beats in sync with the breath or something different. (Pause) With the next breath allow the exhale to be twice the duration of the inhale. Notice that this breath relaxes you twice as deeply. (Pause) Notice that this breath carries you to your “safe place” . . . “a sanctuary of peace,” continuously unfolding and omnipresent (Pause) . . . When you feel you have succeeded in reaching this sanctuary, allow your breath to return to normal (Pause). Offer an intention, if you wish. When you are ready, slowly open your eyes. As you return to physical awareness, try to maintain some awareness of the sanctuary that is omnipresent in your experience as you begin the following movements.

1. Cats And Dogs (Intention: Surrender, Relaxation) •

Place hands and knees on the floor about hip-width apart in Table Position.

•

INHALE .

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EXHALE and drop your head, tuck in your chin and drop your tail bone as you arch your back and open up your shoulder blades.

•

INHALE, raise your head and tail bone and dropping the abdomen, arch your spine in the opposite direction.

Following the breath, repeat these movements 8 to 10 times. Once you are familiar with the movements, try to release the details of the movement from your mind and focus on the breath. Let it move you, much like an ocean wave moves.

1a. Cats And Dogs Seated In Chair (Intention: Surrender, Relaxation) •

Plant both feet on the floor. Knees should be bent at a 90-degree angle, feet parallel, shoulder-width apart and spine erect. Place the palms of your hands on your thighs. You may also grab on to the sides of the chair to maintain your balance if necessary.

•

INHALE.

•

EXHALE and drop your head, tucking your chin and arching your back, opening up the shoulder blades.

•

INHALE, lifting your head without letting it fall backwards and push your chest forward arching your back in the opposite direction. You will notice that as you push your chest forward, the shoulder blades will move toward each other. Keep your shoulders down from your ears.

REPEAT these movements 8 to 10 times. As you become familiar with the instructions, become a witness to the movement and let the breath do the work of moving your body – much like the movement of an ocean wave.

2. Stretch From Side To Side •

In standing position, feet should be about hip-width apart and your weight planted equally on all 4 corners of the feet (mound of the big toe, mound of the little toe, inside of the heel and the back of the heel). Lift your kneecaps, drop your tail bone, lift your sternum, and draw shoulder blades down toward the sit bones. With relaxed shoulders and jaw, gently extend through the back of the neck, reaching out through the crown, and drawing the chin inward.

•

INHALE, the right arm up over your head, reaching over toward the opposite wall on your left as you EXHALE.

•

INHALE once again drawing the arm back toward the ceiling and EXHALE it back down to your side.

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REPEAT this movement to the opposite side. REPEAT 4 times on each side reaching a little further each time.

(Make sure not to lean forward or back – your body should be positioned as if between 2 panes of glass.)

2a. Side Stretch Seated In Chair •

Sit in chair with spine erect and feet parallel and flat on the floor. Knees and ankles should bend at a 90-degree angle. Hang on to the side of the chair with the stationary hand if you wish.

•

Draw the shoulder blades down toward the sit bones and with relaxed shoulders and jaw, gently extend the back of your neck, reaching out through the crown, and drawing the chin in.

•

INHALE, the right arm up over your head, reaching over toward the opposite wall on your left as you EXHALE.

•

REPEAT this movement to the opposite side.

•

REPEAT 4 times on each side reaching a little further each time.

(Make sure not to lean forward or back – your body should be positioned as if between 2 panes of glass.)

3. Forward Lunge (Intention – To Open The Heart Center) •

To avoid slipping, please wear non-slip shoes or bare feet.

•

BEGIN IN STANDING POSITION. Feet should be hip-width apart with weight planted equally on all 4 corners of the feet (mound of the big toe, mound of the little toe, inside of the heel and the back of the heel). Lift your knee caps, drop your tail bone, lift your sternum and draw your shoulder blades down toward the sit bones. Gently extend through the back of your neck, reaching out through the crown, and drawing the chin in.

•

STEP forward with the right foot (approximately 1 1/2 paces) simultaneously allowing the back foot to pivot as needed.

•

INHALE, rock forward bending the right knee to 90 degrees. At the same time, raise the arms out to the side. Bend your elbows to a 90-degree angle with fingers pointing toward the ceiling (palms are facing out). As you rock forward on the right leg, press Page 143

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the chest through the gates of the arms, lifting the navel and expanding through the chest. •

EXHALE, rock back, straightening the right knee and simultaneously drawing the arms into prayer position in front of the chest. REPEAT 4-6 times. Note: keep shoulders relaxed and down from the ears and keep lower back long and hips squared, i.e., with right leg forward, draw left hip forward. (Exercise from Yoga for Transformation, Gary Kraftsow, with some modification on my part.)

3a. Forward Lunge In Chair This can be accomplished seated in the chair using only the arm movements above. OR the chair may be used as a support from standing position. [If seated, see seated position above from 2a.] •

INHALE, and with straight spine, bend at the hip creases, simultaneously lifting the arms out to the sides with elbows bent to a 90-degree angle, palms facing out. Press the chest through the gates of the arms.

•

EXHALE, rock back to vertical spine bringing hands into prayer position in front of the chest.

•

If standing alongside of the chair, place the chair on the left side. The back of the chair should be approximately midway from front to back of a 1 1/2 strides. Hold on to the chair with your left hand.

•

INHALE, and step forward (1 1/2 strides) with the right foot. Bend the right knee to 90 degrees. Simultaneously bring right arm out to the side bending the elbow to 90 degrees and pointing the fingers toward the ceiling, palm facing out. Press both shoulders back, bringing the shoulder blades together. The expanded chest should move forward past the right arm. EXHALE, straighten the forward knee and draw right hand in to 1-handed prayer position in front of breastbone. Repeat 4-6 times.

•

REPEAT on the opposite side.

(Exercise from Yoga for Transformation, Gary Kraftsow) with some modification on my part.

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4. Seated Sequence •

Sit on the floor with legs extended, toes pointing up. Draw the kneecaps up and lengthen through the legs while pressing out through the heels. Arms rest alongside of the body and palms are resting on the floor. Spine is long and pelvis is rocked forward. Reach out gently through the back of the neck and out through the crown.

•

INHALE, the arms up and extend them out to the sides.

•

EXHALE, arch your back into cat form and draw hands into prayer position in front of the chest.

•

INHALE and bend gently forward at the hip creases and with straight long spine. Simultaneously, extend arms out in front of you (arms will be alongside of the ears) reaching toward the opposite wall.

•

EXHALE, draw head and arms up with straight spine, arms remain extended alongside of the ears and fingers reach toward the ceiling.

•

INHALE, extending arms out to the sides once again. This brings us back to the beginning of the sequence.

•

REPEAT 3 times.

•

This same sequence is REPEATED in simple cross-legged, seated position.

REPEAT once again, seated with extended legs forming a wide angle of about 45 degrees. Toes are drawn back towards the body. Draw the kneecaps up while pressing out through the heels. Stretch evenly through inner and outer edges of the legs. Note: keep shoulders down from the ears, and jaw relaxed.

4a. Seated Sequence In Chair •

The same arm movements will be repeated as above. Leg positions follow: Seated position in the chair (see above Exercise 2a).

•

Place the sole of the left foot on the floor and rest the right ankle on the left leg just above the knee. Both knees should be at a 90-degree angle. Also hold the foot at a 90degree angle to the ankle. Follow the arm sequence under SEATED SEQUENCE #4. REPEAT 3 times on the opposite side.

•

Place the soles of the feet flat on the floor. Spread the thighs wide (about 45 degrees) – knees and ankles are once again kept at a 90-degree angle. The feet are splayed to about 45 degrees. Knees, ankles and feet should be aligned. Press the knees out and

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rotate the thigh muscles to the outside. Follow the arm sequence per the SEATED SEQUENCE #4. Choose leg positions based on ability and comfort. RETURN once again to the focus on the breath. Try to maintain some of your focus on the “sanctuary of peace” throughout your day.

More About Relaxation Relaxing should be the most natural action a human being can perform, and yet very few of us know how to relax at all, much less relax correctly. An animal can relax its body instantly even after great effort and high adrenalin flow. Many experts in the martial arts are able to make a tremendous physical effort, gathering all their body resources and bunching up every muscle in the organism, and then just as suddenly go completely limp and relaxed as if nothing had happened. Some human beings can do the same thing with emotions, allowing them to rise to fever pitch and then letting go just as suddenly as they were aroused. This ability to create an emotion and to cease creating an emotion is — although completely natural to the being — viewed by the majority of human beings as insincerity, because the individual was not fully identified, or trapped, within the emotion. If you were able to create, continue and cease creating thoughts, efforts and emotions in yourself at will, then you could come to full effort or relax as you wished, rather than wait for relaxation until the body has spent its energies and is forced to faint. An animal, which doesn’t have inhibitions placed on it by civilization, can lie down and achieve full relaxation in less than one minute. But a human being can lie down, and be unable to relax at all even after many hours. Relaxation is essential for the organism. It allows the body, nervous system, brain and all the organs to revitalize themselves, getting the maximum advantage from a rest period. A rest period taken with relaxation can be much better for this revitalization than ten hours of sleep with no relaxation. Teaching relaxation instantaneously is one of the advantages of the so-called “Samadhi Tank,” a sensory input attenuation device, in which the body floats, supported by a high-density solution, and in which all muscles except the heart and lung muscles completely relax. While relaxation can be accomplished in the tank without training, the gravitational pull, which is ordinarily encountered outside the tank, makes training a necessity. Proper relaxation relieves the tensions of the body, mind and emotions, and gives one a feeling of increased vitality and energy.

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A Full Relaxation Or Draining Exercise It is helpful to have this read aloud to you: “Close your eyes. Place your attention on your feet. Now release all tensions in your feet. Move your attention upward and release any tension being held in your legs. Now move your attention upward to your hips and buttocks, directing them in the same way to release all tension. Feel gravity take hold of your body and press it downward. Now turn your attention back to your feet to check if any tension has crept back in and relax the feet again. Do not take for granted that if you relax once, you are totally relaxed. Now bring your attention to your abdomen, releasing the tension being maintained there. Direct your attention to your lower back and release all the tension there. Bring your attention to your chest and upper back, letting the tension go. Move your attention to your neck and shoulders, releasing any tension there. Now, each time you exhale, pass your attention through the body from the feet upward, instantly releasing any tensions you notice. Continue doing this until you are satisfied with the body's relaxation. “Close your eyes and breathe quietly, concentrating on — but not changing — your breathing. Notice the inhalation, stop, exhalation and hold of normal breath. There is a point between the in-breath and the out-breath in which everything stops just for a moment. This is the focal point of your concentration. “Concentrate only on your breathing, allowing all other areas of attention to fall away for a while. If a thought, effort or emotion arises, it is because you have allowed your attention to wander away from the breathing. Refix your attention on the breathing immediately, without regret or pausing to reflect on it. “That’s all there is to it! It’s simple, but it really works! Practice this when you are under stress so you have plenty of experience with it in preparation for terminus. When in stress, the intellectual function of the mind, which is normally in control, shuts down either completely or at least partially, thus leaving the body with no “director” except the survival instinct. The body’s reaction, if untrained, will be to increase the breathing, thus increasing the adrenalin. If the body has been trained to act automatically to control the breathing and adrenalin factors even under stress, this ability will continue. That’s the point of training and applying the preparation techniques rather than just reading about them.”

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Facial Relaxation Always keep the tension in the facial muscles dropped, and neck muscles relaxed while you are doing your preparations and exercises. What this means is that if the face mask is tense, it indicates that thoughts, effort or emotion are aroused, making the entire organism tense, putting unnecessary stress on your body and taking your consciousness off-center into the tensions of the body. If the face mask is relaxed, or dropped — that is, not dramatizing anything — then the body will be completely relaxed with it. The face mask in most cases determines the tension or relaxation of the rest of the body. It serves as the “stage director.” If you control the face mask, then you direct the stage director. This is much easier and more effective than trying to direct all the muscles everywhere in the body. By controlling the mask and neck muscles, your attention can be more concentrated. You have more power to control the face than you have to control the whole body. Besides, trying to control the whole body divides your attention into too many parts, splitting your consciousness, and again, taking you off-center. By applying a small effort to the face mask, you avoid having to apply a big effort to all muscles of the body. Socially this is all wrong, because we continually use the face mask to indicate our feelings about things. So there are bound to be some inhibitions about dropping the mask. We are all on stage, and while we are on stage, we do not like to expose our real faces. In one way, this is like taking off a costume in the middle of a play. We don’t like to see how we self-program the body to dramatize the significance of life. So the mask is the indicator of how important or significant something is to us. When the mask shows a “character,” it means that some thought, effort or emotion is passing through and we can feel it and are reacting to it. Sometimes — and perhaps even more than just occasionally — the mask will take on a character due to thoughts and feelings that are not about things in the here-and-now spaceand-time of the moment. In other words, the individual becomes concerned about tomorrow, or about something or someone who is not there. We found that a good remedy for this is to call the person’s attention to what they are doing here and now: “What’s going on?” “I’m thinking about my death.” “What about your death?” “I was thinking about how my children will feel about it.” “Where are your children right now?” “Oh . . my children aren’t here right now.” “That’s right.” “Oh, okay, I feel better now.”

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A good technique if you notice worry forming on your brow, or your partner points it out, is to ask about what’s making it happen, and then pointing out something that's in the room that you are in. Exactly where is such-and-such that you are worried about in this room now? You’ll be surprised to realize that you are trying to do something about something that isn’t right here and right now!

Diffusion Of Vision Do this next exercise seated in a chair. This exercise will really give you a glimpse of the caregiver space. Look straight ahead. Spread your arms out to the side so you cannot see your hands. Then, wiggling your fingers, slowly bring your hands forward until you first notice the finger movements out of the corner of your eyes. This is your peripheral range of vision. Now reach your arms overhead and without moving your head, look for the moving fingers as you slowly lower your arms. When you first see the fingers . . . that is the vertical range of vision. Now unfocus your eyes to take in a panoramic view of the entire range of vision. Observe the large area that makes up your total field of vision is much greater than when your vision is focused on single objects. While doing this exercise, be sure to monitor your facial mask in order to clear any tensions that arise. Notice that keeping your vision diffused requires moment-to-moment attention. Without effort, our vision is naturally drawn to focus onto a narrow portion of the available scope of our vision. Keeping a wider field of vision allows higher awareness to enter, though you will be continually drawn to wanting to focus on something small. Keep your efforts gentle. Don't force anything here.

Contact Exercise Or Creating The Reading Space Now you will learn to use the previous exercises to share a space with another Being without the interference generated by social behavior or evasive actions. The Exercise is called “Contact.” You can either sit facing your care partner or work with a mirror. Relax the body, as in the Draining Exercise, and diffuse your vision. Intentionally divide your concentrated attention and place half of your attention on your partner's facial mask, the other half of your attention on your own facial mask. Keep your vision diffused, with your attention split between your facial mask and your partner's facial mask. Help each other by making your best efforts to release all tensions of the facial mask. Continue with the same relaxed facial mask as in the previous exercise. Many types of phenomena may appear over the facial masks, but continue until you can easily be with one Page 149

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another (or looking in the mirror) without having to dramatize social expressions and personality. If contact is disrupted, then interrupt the exercise to collect your attention and ask, “Break. What happened?” Accept whatever explanation is offered (it should be brief). After acknowledging by saying “Thank you,” begin again. Don't hesitate to interrupt if there has been a break in the contact. The attitude to maintain is that each tension response and reaction that occurs on the face of one partner will be felt and manifested in the other, so it is important that each partner make an effort to keep a relaxed facial mask. You are trying to develop the ability to just “be” with someone without the normal bodily manifestations and reactions. Keeping this in mind will help to correct the technique quickly. Some people may find that they are able to achieve contact relatively quickly. But very often it will require between 5 and 20 hours to get beyond all the automatic reactions of the body and mind so you can be in a good clean contact with each other. In some cases it may take even longer than that.

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Appendix D: Spiritual Assessment Tools FICA The FICA Spiritual History Tool was developed by Dr. Puchalski and a group of primary care physicians to help physicians and other healthcare professionals address spiritual issues with patients. Spiritual histories are taken as part of the regular history during an annual exam or new patient visit, but can also be taken as part of follow-up visits, as appropriate. The FICA tool serves as a guide for conversations in the clinical setting. Discovering the person's true spiritual wishes is important. According to one statistic, 83% of all patients would like to have a spiritual discussion at admission to hospital. (F - Faith and Belief, I - Importance, C - Community and A - Address/Action in Care). Our thanks to Dr. Puchalski and the Gwish team. See: http://www.gwumc.edu/gwish/clinical/fica.cfm F: Faith and Belief: “What do you believe in that gives meaning to your life?” A broad, open-ended question is usually asked. There is no single correct question, although Dr. Pulchalski has found the above and the following to be useful. “Do you consider yourself to be a religious or spiritual person?” Both religious and spiritual are used because individuals may relate to one and may even take offense at the other. Many individuals who will say they are not religious will admit to being spiritual, which should prompt a discussion of what this means to them. Conversely, an answer such as, “Yes, I'm Catholic,” tells you something, but begs exploration of what this means. I: Importance and Influence: “How important is your faith (or religion or spirituality) to you?” Just hearing that the person is spiritual or a member of a particular religion tells you little. How important is it? How is it important? There is a big difference between a Catholic who has not been to Mass since childhood and one who goes to Mass daily. . C: Community: “Are you a part of a religious or spiritual community?” Particularly for those who participate in an organized religion, community is often a central part of their spiritual and social experience. It is not uncommon that just when this community becomes most important, when death approaches, the individual is cut off from that community because of illness and caregiving needs. A: Address or Application: “How would you like me to address these issues in your health care?” “How might these things apply to your current situation?” “How can we assist you in your spiritual care?” Patients and families often feel better simply because they have been given permission to share their beliefs. That you have inquired is usually seen as a sign of respect. However, there may be very specific things you can do to be of assistance. In a talk on assessing suffering, Baines told the story of a man who reported 10 of 10 on a scale of suffering that related entirely to his spiritual care. He had regularly attended a certain service and was now unable to do so, which resulted in unbearable suffering. With permission, the hospice team contacted the ministry, which sent a home ministry team to the patient's home. His suffering score dropped to 0 of 10. As in this case, assistance for many will mean access. A simple phone call to the proper clergy member can significantly relieve distress.

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Patients and families may also have fears related to spiritual issues that they may be hesitant to express. For example, Sikhs wear sacred regalia that should not be removed from the person at any time. Patients and families may become terrified that healthcare workers will remove them. Asking if patients have any special concerns or fears and then addressing them may be of great assistance.

SPIRIT Assessment Our thanks to Ambuel, B. and D. E. Weissman. Taken from: Fast Fact and Concept #19; Taking a Spiritual History. 1999, End of Life Education Project: http://www.eperc.mcw.edu. For educational purposes only.

Taking A Spiritual History S — spiritual belief system Do you have a formal religious affiliation? Can you describe this? Do you have a spiritual life that is important to you? What is your clearest sense of the meaning of your life at this time?

P — personal spirituality Describe the beliefs and practices of your religion that you personally accept. Describe those beliefs and practices that you do not accept or follow. In what ways is your spirituality/religion meaningful for you? How is your spirituality/religion important to you in daily life?

I — integration with a spiritual community Do you belong to any religious or spiritual groups or communities? How do you participate in this group/community? What is your role? What importance does this group have for you? In what ways is this group a source of support for you? What types of support and help does or could this group provide for you in dealing with health issues?

R — ritualized practices and restrictions What specific practices do you carry out as part of your religious and spiritual life (e.g. prayer, meditation, service, etc.)? What lifestyle activities or practices does your religion encourage, discourage or forbid? What meaning do these practices and restrictions have for you? To what extent have you followed these guidelines?

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I — implications for medical care Are there specific elements of medical care that your religion discourages or forbids? To what extent have you followed these guidelines? What aspects of your religion/spirituality would you like to keep in mind as I care for you? What knowledge or understanding would strengthen our relationship as physician and patient? Are there barriers to our relationship based upon religious or spiritual issues? Would you like to discuss religious or spiritual implications of health care?

T — terminal events planning Are there particular aspects of medical care that you wish to forgo or have withheld because of your religion/spirituality? Are there religious or spiritual practices or rituals that you would like to have available in the hospital or at home? Are there religious or spiritual practices that you wish to plan for at the time of death, or following death? From what sources do you draw strength in order to cope with this illness? For what in your life do you still feel gratitude even though ill? When you are afraid or in pain, how do you find comfort? As we plan for your medical care near the end of life, in what ways will your religion and spirituality influence your decisions?

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Appendix E: Religious Practices and End of Life Rituals Obviously, we cannot include the details of each and every religious tradition. The following is a small sample of what might be useful if you are unfamiliar with your loved one's wishes. Much of this material is taken from: http://www.new.towson.edu/sct/ritual.htm and we recommend Pat Fosarelli's book: Prayers & Rituals at a Time of Illness and Dying.

Catholic: Praying the Rosary Holy water, icons are a part of the Church Ritual Visit from Clergy, Annointing of the Sick (last rites) is accepted practice Sacrament of Reconciliation (confession) is important Eucharist — central to the Christian Ritual Prayer important at time of death Funerals usually 2-3 days after death Mass may be held on anniversary of death Christians generally allow and encourage prayer for the dying and the dead. The Ars Moriendi practices have become part of the liturgy. It is a practice of the Catholic nuns to pray for the dying and over the body of the dead.

Orthodox Christian: Last annointing before or after death Confession and holy communion done by priest Memorial service on a Sunday closest to 40th day after death Widows avoid social activities for one year

Protestant: Baptism, confirmation and membership are part of growing in the community Prayer, singing and sermon are part of the celebration of worship service Communion at the time nearing death Prayers for comfort and support are accepted Annointing of the sick accepted by some Some believe in faith healing

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Church of the Latter-Day Saints (Mormon): Sacrament if patient requests Baptism for the dead Endowment for the dead and the living Sealings for the dead and the living Second anointing

Jehovah’s Witnesses: Do not believe in sacraments Commemorate the Memorial of Christ’s Death/Lord’s Supper annually May attend meetings 3 times a week in Kingdom Hall Door-to-door evangelizing Refuse to accept blood transfusions Do not use images/icons in worship

Judaism: Important holidays and rites: Yom Kippur (Day of Atonement), Passover, Bar Mitzvah, Bat Mitzvah Kosher foods (alternative might be vegetarian) Emphasis on prolonging life if possible Dying person not left alone, rabbi presence desired Death ritual — Shema (confession prayer) After death, body placed on the floor with feet towards the door, covered with a sheet, candle placed near head Body not moved if at home on Sabbath Mourning — tearing of a garment symbolized in pinning a black ribbon to garment and tear the ribbon Funerals — day after death, white shroud, wooden closed coffin, brief service Stages of mourning — from death until 30 days after burial Autopsy and cremation forbidden Death anniversaries are noted In the Jewish tradition, the Mourners' Kaddish does not mention death at all, but instead praises God. El male rachamim is said by Ashkenazi Jewish community for the ascension of the souls of the dead, during the funeral, going up to the grave of the departed, remembrance days, and other occasions on which the memory of the dead is recalled (Wikipedia)

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Islam: 5 pillars of Islam (confession of faith daily; prayer five times a day; fasting during month of Ramadan; alms giving; pilgrimage to Mecca) Fasting under Ramadan not required for the sick Pork forbidden, other meats prepared under Islamic law Alcohol forbidden Second degree male relative (uncle/cousin) is contact Patient may choose to face Mecca Discussions about death may not be welcomed Stopping medical treatment against Allah’s will Grief may be expressed by slapping body Same sex Muslim handles body after death, otherwise non-Muslim should wear gloves In Islam, prayer is intercessory on behalf of the dying or dead person for a more favorable judgement by God.

Hinduism: Vegetarians Fasting during festivals not required of patients Hindu priest assists in death process — tying thread around neck or wrist, sprinkling with water from Ganges River, or placing leaf of basil on tongue Do not wash body after death For Hindus, a reading from the Bhagavad Gita is deemed to be appropriate: “We shall be for all time ... As the spirit of our mortal body wanders on in childhood, youth and old age, the Spirit wanders to a new body.” (Fosarelli)

Buddhism: Vegetarian diet because of belief in reincarnation Consult Buddhist monks to offer spiritual support Shrine to Buddha may be placed in patient’s room to spend time meditating Clear Mindfulness important, may refuse drugs After death, monk recites prayers for at least one hour Body untouched or not moved for 3 days Body not left alone Mantra chanted around body or into ears No weeping or distractions Most have body cremated Ceremony after one year to generate energy for the dead in new incarnation Buddhism has many prayers, rituals and readings for those who are dead and dying.

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Native American: Sweat lodge is the place of ritual for purification, healing and spiritual renewal Hunting ceremonies and rituals dealing with spirits Fire men, drummers, chanting at healing services Circle dances, joining hands

The Clear Light Prayer Now I am experiencing the Clear Light of objective reality. Nothing is happening, nothing ever has happened or ever will happen. My present sense of self, the voyager, is in reality the void itself, having no qualities or characteristics. I remember myself as the voyager, whose deepest nature is the Clear Light itself; I am one; there is no other. I am the voidness of the void, the eternal unborn, the uncreated, neither real nor unreal. All that I have been conscious of is my own play of consciousness, a dance of Light, the swirling patterns of light in infinite extension, endless endlessness, the Absolute beyond change, existence, reality. I, the voyager, am inseparable from the Clear Light; I cannot be born, die, exist, or change. I know now that this is my true nature. – From American Book of the Dead by E.J. Gold

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Appendix F: Questions About Doing Readings We are often asked by new readers, “How do I know if I am doing the Readings correctly?” If you are looking for a yardstick to gauge your readings, consider the following points. They can be used as milestones to gauge your reading effectiveness. Do you actually care that the other being hears you? Drawing on analogies: It is as if you are delivering instructions on a bad cell phone connection, or over a shortwave radio, or that you are at a place where you will only have a short time to deliver a vital instruction in the midst of noise and distraction, i.e., a ticket booth at a train station, or the like. Do you read with intention? Intention in this context could be considered a kind of force. Are you pushing the Reading through the ethers, toward the voyager, or are you just letting the words fall from your lips? Reading with intention is taking the emotional connection that you have with the voyager and strengthening it. Emotion may get your Reading started, but it is voluntary intention which will strengthen it. Do you enunciate each word? Each word is a universe. Deliver each word with the understanding that each word is an important contribution to the overall Reading. Delivering “most” of the words is not enough. All of the words individually and collectively are important. Are you reading at an even, measured pace? Caring enough to do the reading without hurrying or slurring the words together is a good start. And being considerate enough to deliver the Reading without... long... drawn... out... pauses... is good, too. Do you sit quietly without fidgeting? There are many aspects of fidgeting that make it a negative in the reading space. It is an energy drain. It is a distraction. It is an indication of a lack of attentiveness and focus. Is your facial mask relaxed? Maintaining a relaxed facial mask throughout the Reading is an important tool to keep you on track with the Reading. We have exercises in our Reader's course that can help you learn this skill. Can you deliberately carve out a time slot so that you do the Readings without hurrying? It is important to free yourself from the normal demands of the day so that you may Page 158

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deliver the Reading without hurrying to get to the next task. Free yourself from daily concerns. Do you have a sense of connection with the voyager? This is not calling for evidence admissible in a court of law. Simply, do you feel a connection with the individual you are reading for? There are other indicators, but these should be sufficient for the moment. If you take the full course, you will be trained in the full set of reading parameters. Not to worry though. The ones above are quite sufficient for doing most excellent readings. In fact, when you get right down to it, nothing is required other than a wish and willingness to do a Reading. If you feel inclined to read for a loved one, that is enough. When someone is floundering in the water, any life preserver is a good life preserver. It does not matter if it happens to be old, ratty, stained, ripped or torn. If it floats, that is enough. The same with a Reading. As long as the words are there and include a wish that they be used for the benefit of the voyager, that is enough.

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Appendix G: The Stages of Dying A Tibetan View “The first effects of dying are difficulty in digesting food, swallowing and lifting the arms, legs and head. The breath is short and gasping. The limbs, then the whole body is chilled and nothing warms them. The mind is agitated and thoughts arise uncontrollably. “It becomes impossible to stay erect. We cannot lift our arms and legs, the head rolls back and there is a feeling of heavy pressure on the whole body. The agitation ceases and is replaced by drowsiness, a semi-swoon. We see mirage-like visions and flickering lights. “There is dryness of mouth, nose, throat and eyes. Bodily sensations are greatly reduced and alternate between pain and pleasure, heat and cold. The mind becomes irritable and we have visions of smoke. “Then we cannot recognize friends or family. Sound and sight are confused. We see red dots like fireflies. “We become totally immobile. The breath is shorter and more gasping, our exhalations longer. Sound and sight blur. Visionary experiences arise according to our karma. Persons whose activities of body, speech and mind have been very negative may see terrifying forms or replay of the bad moments of their lives. They might react with guttural sounds of fear. Those who have been virtuous and kind might experience blissful, heavenly visions and see forms of loving friends and enlightened beings. They would have little fear of death. “Finally, there is one long exhalation, the 'death rattle'. This is followed by the closure of sight, hearing, smell, taste and touch as the winds retract toward the heart. Physically one is dead.” From: Life in Relation to Death, Chagdud Tulku Rinpoche 16

Symptoms Of Transition “As a voyager, I release myself from the feeble grip of human primate consciousness; I feel myself reverting to my native state, the perfect shining void, endless light in infinite expansion; no past, present or future, all experience dissolving into the deep, shining eternal voidness of the void, releasing myself from the identity and environment of the human primate. I will enumerate the symptoms of transition: “Earth sinking into Water. A deep, incessant sensation of slowly increasing pressure, of being inexorably drawn downward into a pool of mercury or lead, of melting into the earth. “Water sinking into Fire. A sensation of clammy coldness as though one had been suddenly immersed in icewater — it begins with uncontrollable shivering, gradually merging into unbreathably hot, oppressively still atmosphere. Page 160

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“Fire sinking into Air. A sensation of being just on the verge of explosion, giving way to a sensation of total dispersal of self. “Air into Clear Light. A feeling of being utterly at peace, utterly alone, completely outside space and time, free of all necessity; a sudden, powerful and thrilling sense of deep, ironic knowledge sweeps through the self, but this great, profound, sweeping, allencompassing knowledge doesn’t seem to refer to anything in particular.” From the American Book of the Dead, E.J. Gold, 74

Signs of Passing – How Imminent Is Death? In this era of “dying harder” how can we know when our loved one is ready to pass? In most cases death can be seen as an eight-stage process. On the scale of the eight stages, what we call physical death, is only about half-way, at step 4. The steps are not exact and durations may differ for each individual, but at any one of them you, as caregiver, can give help. For Margaret Coberly, RN, the description of the eight stages of dissolution is the “most enriching and psychologically helpful Tibetan Buddhist teaching about death and dying...The precise nature of the teachings provide an easy-to-read map through the unknown territory of dying and can easily be used by westerners who may want to broaden their understanding about the dying trajectory...” From: Sacred Passage, Margaret Coberly, 79 1. Earth dissolves into Water. The mind is now starting to separate from the body. The dying person experiences a feeling of powerlessness and deep heaviness that feels like sinking. He or she complains about weakness and exhaustion. The eyes may roll back and the person experiences mental turmoil. Caregivers may notice that the person actually feels heavier during transfers or when moving in bed. Caregivers can help by elevating the patient's head, eliminating heavy covers, providing reassurance in clear and direct speech and avoiding emotional heaviness and anxiety (as well as needless conversation) at the bedside. 2. Water dissolves into Fire. Initially the feeling here is of drowning, but it is quickly replaced by dehydration, heat and parchedness. The person may likely withdraw and lose interest in worldly affairs. Her perception of pain may decrease and she will have difficulty swallowing. Ice chips made of water or juice and a damp cloth on the neck or forehead will help. The caregivers should protect the dying from confusion and fright, at the same time informing upset friends and relatives that the dying person is not rejecting or turning away from them, but naturally turning inward. 3. Fire dissolves into Wind. Initially a feeling of being consumed by fire is replaced by a feeling of being very cold. Digestion and respiration weaken. The extremities mottle and the person may require extra clothing. Ordinary consciousness becomes very dim, the mind Page 161

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becomes even more unfocused and the person may not even recognize family members. At this time it is important to avoid disturbing the dying person's mind. Keep a positive mental outlook at all times around the dying. 4. Wind dissolves into Space. Respiration becomes slow and rattled. A profound silence envelops the dying. According to western medicine, death has occurred. The dying person is no longer aware of external forces. Visions arise according to the predominant mental tendencies. It is important at this time to do Readings from texts to guide the dying and explain what is happening or speak softly to the dying person, urging him to move onward and merge with the peace, happiness and light (or any religious figure or symbol) that is beckoning. 5-8. The final 4 stages of dying involve dissolution of the ordinary mind and the subtle mind. We need not describe these here except to let the caregiver know that for a period, the dying person is still going through dissolution and that an awareness of some sort exists. Tibetan Buddhists let the body remain undisturbed for 3 or 4 days to let dissolution occur. This is usually impossible for westerners, but it is important to handle the body with care: avoid jostling, and keep a meditative atmosphere around it.

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Appendix H: Anecdotes and Personal Accounts Of Reading Experiences Why Am I Here? by Sean Basham I first encountered the American Book of the Dead while working in a small bookshop in Florida in 1975. At that time I was a student with the Arica Institute, and had recently concluded three years of experimentation with psychedelic drugs. I had a passing familiarity with the Evans-Wentz translation of the Tibetan manual, and had also read with interest Trungpa’s introduction to the version prepared by him and Francesca Fremantle in which he correlated the visions in the bardo to everyday psychic activity. My understanding of the texts was superficial at best. The American Book of the Dead (ABD), came as a revelation. The introductory material especially spoke directly to the various experiences I had undergone while using psychedelics, and I was deeply affected by the idea of the Transit state as one which was constantly underlying apparent reality. I began to “hang out” with the book on a regular basis. The first opportunity I had for using the text occurred when I assisted at an autopsy in 1976. Alone, at home, afterwards, I was unable to shake obsessive thoughts about the experience. I felt as if I were being haunted by the spirit of the person upon whose remains I had operated earlier in the day. Finally, I lit a candle and addressed the deceased, reading slowly through the ABD, wishing him the best possible evolution. At the conclusion of this ritual, the obsessive thoughts had ceased and I had the impression that his essence had been pacified. Over the next several years I had three more occasions to read for people who had died, and in each case I felt a deepening connection, especially after the revised ABD came out with the instructions printed in the first-person singular. I was by this time reading the ABD as a part of my normal spiritual discipline. Experiences while doing so were many. Most common was a perception of profound silence, as if the world was holding its breath while the readings took place. There were also a number of perceptual changes which took place while reading the “Confrontation with the Clear Light,” a passage I soon committed to memory and could recite without reference to the text. In addition to the “bell jar” effect, objects in the room would glow as though illuminated from within, and my voice would take on a resonance and power quite different from its ordinary tenor. There were also a number of physical sensations: feeling as if the body were hollow, or an intense pressure in my head as if two large plates of solid material were attempting to pass through one another, and a most unsettling sensation that my chin and my feet were suddenly at the same level.

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The most profound effects were manifest in the bardo of the dream state. Over the years I had acquired the habit of recording my dreams, and I was astonished at the number of episodes which clearly were various stages of transit, including a variety of locales which I began to recognize as Rebirth Stations. As time went by, and the instructions from the ABD became more familiar to me, I was eventually able to recall them during the process of dreaming. Several times, dreams, which would normally qualify as nightmares, were terminated by realizing that the person or object engendering terror was in actuality the Guide. I learned to move forward instead of away from such manifestations, often actually embracing them in the awareness that they were my projections of my own consciousness. When I did so, the fear and panic would vanish in an explosion of radiant energy and I would wake feeling enormously energized. I also discovered that I could effect passage from some endless labyrinthine maze of hotel corridors or sub-basements by ceasing automatic wandering, keeping still, and gathering the infinite levels of halls or stairways into my awareness simultaneously. Again the maze would dissolve into energy and I would experience the burst of illumination. It has become more and more common in recent years to find myself in one or another dream locale saying, “Oh yes, I know this place. I’ve been here before.” Over the past twelve years I have discussed the bardo teachings and my experiences with them with my close friends and family. As a result, we have had many deep discussions about the nature of death, the dying process, and the best way to approach the end of one’s life. I was surprised to discover that many of the strange “dreams” experienced by those members of my family who had undergone intensive surgeries were bardo experiences. Often I was able to ask questions based on the apparitions of the Second Stage of Transit, which allowed them to recall further details. The result of such conversations has been an increased freedom within my family in dealing with death. Each household has a copy of the American Book of the Dead and has been instructed in how to read for the sick and dying. In December of 1996, after a period of increasing ill health, my lover of eight years, David, was diagnosed with AIDS. He was hospitalized with cryptococcal meningitis and lingered for four months, bedridden and angry. For much of this time he refused to communicate and towards the end, when rage and denial gave way to acceptance, he was unable to speak. During the initial stages of this process I read the ABD for him at home. It was not until the last two weeks of his life that he allowed me to begin readings with him at the hospital. Each day we would go over the instructions for confronting the Clear Light and work on various sections of the other states. David was a close follower of the Arica system for nearly fifteen years, and I took particular care to point out similarities between the karmic visions of the Second State and exercises he had done in the course of his training. He was also repeatedly assured that a small group of his close friends would read the American Book of the Dead in its entirety after his death, so no matter what he found taking place after passage, he should listen for our voices and pay attention.

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On the day David died, his family and I were with him continuously during the last eight hours. At regular intervals, I read the instructions for recognizing the symptoms of death and those for Confronting the Clear Light. Pointing out the symptoms observable by the dying person was particularly useful since during his life, David was a practitioner of traditional Chinese acupuncture and the stages were couched in the terms of the five elements he knew so well from his practice. His family, although of a fundamentalist Christian background, accepted that these readings were something that David desired and, while having little grasp of what we were doing, did their best to not interfere. The hospital staff, having been forewarned by us of what we would be doing (following the advice given in the ABD), was very cooperative and agreed to let us have at least an hour undisturbed with the body. When, at 9 p.m. that evening, David’s breath stopped, I pressed the channels in the neck and delivered the instructions for the moment of death and Confronting the Clear Light slowly and distinctly. His family was then invited to join us in a Christian prayer. While they had their grief, David’s friends and members of his spiritual community held a meditative vigil and periodically recited the Clear Light Confrontation. After two hours we cleaned and prepared the body for its journey to the hospital morgue. It was David’s instructions that he be cremated the following day, so when we went to identify the body at the funeral home, we again reiterated the first stage instructions, adding that the time had come for him to abandon all attachment to the body, and listen for the voices of those who loved him as we read the instructions for the bardo. The following day, four of us cleaned and purified a room and, seated with candles, incense and the urn containing David’s ashes, read the American Book of the Dead slowly in shifts, repeating the invocation prayers in unison. There is one final story that I would like to share from this process. Around the third month of David's illness, when the frustration and craziness had reached peak level, I had a rather remarkable experience. I had spent the previous period in a state of “hyper-cope,” shunting aside my own emotional needs and reactions while dealing with those of the people around me. One morning, after a night of casual drinking with a friend who had come from out of town to lend support, I awoke with a strange feeling as if I might be getting ready for a slight hangover, a possibility I discounted due to the minimal amount of alcohol drunk the night before. Everything in the visual field had a slight skew, as though the room, particularly at the edges, was tilted. When I checked my vision carefully, however, everything seemed fine. A similar sensation manifested in the kinesthetic/spatial sense. While talking with Mary, it seemed that the room contained too much space, and the sound of our voices was too rich, too resonant. A vague sense of anxiety lurked just at the edges of my awareness, so that finally I sat down and asked myself, “Just what is going on here?” The answer chilled me. I carefully called Mary and said, “I have the oddest sensation that I am dead. My heart is pounding and I’m having trouble catching my breath. I’m very afraid. Do you remember in the American Book of the Dead where it says that the dead person attempts to project ordinary Page 165

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life onto the Transit state as if nothing had happened? I feel that this is what has happened to me, and as I talk, I can feel everything going flat.” Quietly Mary asked me what I wanted to do. What I wanted to do was make it stop. At the same time I knew this was precisely the wrong approach, even though the idea of surrendering to the sensations brought on tremendous fear and panic. I replied that I was going to go into the experience, closed my eyes, and allowed the feelings to wash over me. There was a rippling in my guts, and I imagined that I was losing my mind and was about to go completely insane. Sinking from the couch to the floor, I stretched out in the corpse asana, let go of the desire to keep my mind from falling apart and internally recited the Confrontation with the Clear Light. No sooner had I begun, than I felt myself whirling through a vast space and the terror vanished completely. After a moment I sat up and opened my eyes and said, “Whew!” Afterwards, as I dressed to go to the hospital to see David, I had difficulty in recognizing items of clothing that I had owned for years. It was only with tremendous effort that I could say these things were mine; they were no more familiar to me than if they had come from the closet of a stranger. Sitting by David’s bedside that afternoon, I suddenly experienced a feeling of something expanding within my chest. I started to weep and cried for the next four hours: for David, for myself, but most of all from an awareness of how hard the business of dying was. The fear and isolation I had felt earlier stayed with me as a taste of what David and the others on the ward were going through, indeed of what all of us must go though at the hour of our deaths. Without the ABD, I have no idea what I would have made of the opportunity for this opening of the heart, but I cannot doubt that it would have been very different. I cannot begin to express how important the American Book of the Dead has been to me throughout the experience. While David grappled with accepting his condition and fate, I found myself involved with his family, none of whom knew of his homosexuality and were extremely unhappy with my role and that of his friends and community members. In a very real sense, I found myself in transit as well, having to deal with implacable entities who mirrored back and reflected my own fears, anxieties and uncertainties. I owe what little grace and elegance was manifest during this awkward and difficult time directly to my experiences with psychic projections as learned from the ABD. Last month I was, myself, found to have AIDS. I have chosen to play out the process of my death in a different way than did my friend. With the support of my community and family, it has been decided to make my dying a learning process from which everyone might grow and learn. The ABD will play a central part in this process. I am grateful for the American Book of the Dead and the part that it has played in my life. I appreciate its teaching, its clarity, and very much its superb sense of humor. I can say without exaggeration that everything I have known of spiritual and psychological growth in the last decade has been a gloss on its principles. I am certain that it will continue to illuminate my life and my death, as have its predecessors. Page 166

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Elegy for My Uncle by Iven Lourie To the divine silence of unreachable endlessness… On the 19th floor of the window of Evan and Jim’s Manhattan apartment I am reading the voyager instructions for my Uncle Morris Pokrassa “Moish” born 1919 died 2001 on Long Island New York I can easily call up his image in the easy chair Dyckman Street near Broadway apartment reading the New York Times the tremor in his hands from birth Despite the cerebral palsy he could use wrenches and screwdrivers He showed me when I was a kid how to work on a car engine how to rig up a fishing rod even to tying hooks and the thrill of landing that first catch a three-inch sunfish was so great I never needed to fish the ocean for sailfish or sharks To the divine silence of perfected knowledge… In one of these Manhattan buildings my uncle worked for years delivering the mail to Blue Cross offices wheeling a cart from the mailroom until his legs hurt and when I would visit the City he’d take me on outings to the Metropolitan or the Natural History Museum and even to Carnegie Hall in 1961 or ’62 to see Bob Dylan in his immigrant cap singing “It’s a Hard Rain’s a’Gonna Fall” a thrill for me while my uncle was skeptical To the divine silence of the labyrinth guides… This morning the Chrysler Building is a jeweled tower from a fairy city Midtown is a computer board of energy cells The sun breaks out of the gray sky and flames the City and I see that another sun gleams on the parapets— The Clear Light of the Void illuminates every window of every apartment and office building My uncle grins in his musty chair over the newspaper and he is immersed in the Clear Light For my Uncle Moish I remember myself as the voyager whose deepest nature is the Clear Light itself Page 167

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I strike the closing tone blow out the candle leave the window Downstairs the elevator of Evan’s building opens onto the blue light from the human dimension but walking distance not far away right in this east side neighborhood I expect to find jeweled temples and the gardens of delight

CONTACT (With Non-Phenomenal Voyagers) As the years fly by on the human time track, I find my appreciation of the American Book of the Dead deepening exponentially. It made a profound initial impact 30+ years ago and somehow always brought itself back into my awareness. When something or someone keeps inserting themselves back into my life, I start to pay special attention. Now the ABD is a constant companion in my inner work sanctuary. It is part of my essential toolbox for awakening and offering healing/transformational service to ALL Beings. My first reading efforts were couched in the precious, insular and energetically supported study group at the Transit Practitioners’ space on Home Street, Winnipeg in the late seventies. I remember a group of us reading aloud from the 1978 Standard Revised Edition American Book of the Dead. When it was my turn, the room opened up to infinity, with the resonances of each syllable hovering and vibrating in the gossamer textured air, then rippling outwards endlessly in gently echoing reverb. My first full 49-Day reading cycle was for my uncle who had died quite unexpectedly almost 30 years ago. For the entire set of readings I felt nothing tangible. It was as if he was curled up in a small dark cave, very far away and closed off from any contact. Looking back, that was probably an accurate assessment of the level of contact, but I didn’t know how to activate a responsive inter-being dynamic, or actually formulate a question to ask for real help with that. Still, I have come to realize that sincere effort has a genuine effect that may take a while to ripen. The next complete reading cycle experience was transfigured. My mother-in-law at that time had passed away and I felt drawn to read for her. We had a deep connection on the being level. In life we had transformed a sometimes turbulent relationship into a mutual recognition of deep love and caring. With the awakening of unconditional love, we opened up to a mutual spiritual connection. We shared our journeys with one another and often conversed for hours about all topics spiritual, along with relating many anecdotes of our personal experiential forays into Spirit. I will always treasure these deep and intimate communications. I consider this preliminary relationship work to have helped set the stage for a profound reading voyage. Her being was tangibly felt for the entire cycle. I sensed her Page 168

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appreciation of the readings and the efforts being made on her behalf. I received blessings on a daily basis as I kept our sacred commitment to meet twice a day. During the reading, it often felt like we were conversing, exchanging thoughts and feelings in dimensions of pure energy that existed concurrently with the readings. – A Reader from Winnipeg, CANADA

Transition of My Mother by Deborah Judith In the years that followed my mother’s passage out of the physical world, I grappled with unresolved and powerful feelings. There was a hazy blanket of uncertainty surrounding my perceptions. At this time I asked the Labyrinth Readers’ Society to perform the full cycle of readings on her behalf. When a Practitioner's Course manifested, I felt a need to participate in it. Am I ever glad that I did! Over the several weeks' period of study, discussion, practice (solo and collectively in an online group setting), I was able to take responsibility for the origins of the feelings within me. I saw more clearly what was at the root of all the restlessness within. But there was more. At this point, let us return to the idea of parallel universes that open during special reading spaces. I do not seek them and work to maintain continuity of attention on the reading. One evening while reading from the Angels Healing Journey (an angelic form of the Book of the Dead), an image of the last time I saw my mother alive arose in my inner vision. Suddenly I understood what I had needed to do here with her on the last day of her physical life. I did it. I embraced her and offered unconditional love. Instantly she was fully present with me, as she was (when able to), in the final weeks of her incarnation. We exchanged understanding and stood in the light of having found one another again. At the next reading, she again manifested in the space and we interacted more. I received an image and an asking about rebirth. I thanked her and indicated that I was not available for that service. Faster than thought, the face of my adult daughter arose. Now, I paid close attention. I responded that it is probably best to have the agreement of the parental candidates. The images dissolved and I was alone to finish the reading. The focus of this paper is to write about my experiences of contact with beings during readings from the ABD. Prior to this I hadn’t considered the possibility that this book could somehow function as a portal to meeting other beings concurrently during the reading space. It was an ABD space that opened a doorway to a universe of manifestation/dissolution that many beings seem to be unaware of. This extra-dimensional perception helped my daughter and myself “connect the dots” on an event that often gets misrepresented as a random occurrence. My relationship with my daughter has continued to deepen and grow since that event. I am so grateful for the role of the ABD in shaping and guiding these deeply moving life experiences.

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Se's Experience with his father by Se Duggan Se Duggan missed the moment that his father died. He had stepped out and was walking near the hospice when he heard a voice in his head saying, “Se come in.” When Se entered the room it was clear that something had changed. It was very clear that his father, who had been in a coma for weeks, was now gone. Nurses came in, touched his father's body, brought in candles and read Catholic prayers. Se realized there was nothing he could do about this, but at one point was able to read The Lord's Prayer in his father's ear seven times. Then Se left the room and did a reading of the Clear Light Prayer in another room. According to Se, the treatment of the corpse was “totally against the teaching, and very difficult to handle.” But to change the arrangements of the burial care he would have had to make arrangements days in advance, notify all levels in typical bureaucratic fashion. And to do the Readings he would have had to make arrangements as well. He was able to do Readings for another good friend and he noticed that when he did the Clear Light Reading very close to her, her eyes lit up. She was 98 years old. Se also knew her caregiver very well. She called him right as Freda died, and he was able to do Readings right away. He had good contact with her throughout the 49-day Readings. Se doesn't necessarily feel a connection with the dead, but feels that there is a connection. He doesn't like to get on the bandwagon with the readings. If many people are doing a reading for someone, he will defer. The Readings have helped him keep his sanity numerous times, especially through a divorce. It was incredibly hard for him to leave his kids, but the ABD made it possible. Though he was not allowed to see his kids, he never broke the connection. He was able to be with them on a “being” level. He perceives relationships on a “being” level due to the training he got with the ABD. Se will see news items such as a girl who died in a lake after saving her sister, and do readings for the people who have passed. He did readings for and had a good connection with an Irish man who climbed K2 and died as he was descending. In his final days, Se's father would not always recognize him, and sometimes he comprehended what Se was saying, other times not. One night Se was playing the mandolin, and he saw his seeming unconscious father's feet moving in time to the music. Se's family was one of the first to own a car in his town, and they used to take trips around Ireland. Se told his Dad that he appreciated these trips and the life that his Dad had given to him. His dad quipped: “I'm glad somebody liked it...” When Se's mom passed he did not travel to Ireland, but “settled down and did a good set of Readings.” It's obvious in talking to him how important the practice is to Se and how his dedication to it has helped many.

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Mortuary Experiences by Star Ananda I am a Mortician. I spent three years studying Mortuary Science. I got a job in a small Mortuary. When I enter the Mortuary, I step into Sacred Space. The realization is that someone’s life ended on this side, and my job is to tend to the body and help the family get through the grief and loss process. Any time I am near a dead body, I can sense the essence of the spiritual part. The spiritual side usually conveys a “thank you.” I worked in the evening time during the vigils, visitations, and/or the Rosary. Sometimes, all three of our visiting rooms would have a service going. Our Mortuary closed, around 9 p.m. At the end of the night, I had paperwork to do. This would be after all the visitors had gone. I would also do the Clear Light Reading for all of the deceased in my care. I called each name three times and told them to go to the Clear Light. I noticed spirits easily come to you when you are not afraid. And I felt surrounded by Spiritual Beings. I learned about the Clear Light Readings during my reading of American Book of the Dead, by E.J. Gold. I read the Labyrinth Readings for my Mother after she died. The book inspired me to do Readings for more people, and what better place than at a Mortuary! Now, I am a Labyrinth Reader and the Group Leader. There is something that happened to me every night when I would do my paperwork. I would sit at the desk and directly across from it on the ceiling, I could hear people talking and laughing. I also heard the clinking of glasses as if a party was going on. I found it quite humorous and I felt safe and protected by those spirits. I had an experience once while picking up some bodies. I used the double decker van because I had four bodies to pick up and take back to our Mortuary. I had the van loaded with three of the bodies, then I had a great accident. I was loading the body and it was about 400 pounds. As I was putting the body into the van, the gurney collapsed and the body knocked me to my knees and fell on me! All in all, I really enjoy working with the dead. I enjoy funeral industry work. I feel especially helpful to the dead. Especially, when I would do the Clear Light Reading to them at the end of the night. Maybe I helped some of them get to that Clear Light.

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Contact Information If you have enjoyed reading our caregiver's manual, and especially if you have found it useful for your own everyday life – whether to help with family member whom you are caring for or to help another in your family who is a caregiver or to help in your professional life – we would love to hear from you. Any comments or questions you might have will be welcome to the authors! We can also provide you with multiple copies of this book, with support materials for a seminar or training program involving caregiver skills, and with our advice or consultation on your use of the materials. Here are our contact phone numbers and email addresses: Patricia Elizabeth: 530-615-0684 [email protected] http://www.thecaregiverwebsite.com Grant Abrams: [email protected] http://www.thecaregiverwebsite.com Publisher: Gateways Books and Tapes P.O. Box 370 Nevada City, CA 95959-0370 530-271-2239, 800-869-0658 [email protected] http://www.gatewaysbooksandtapes.com

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