The Caregiver's Guide to Diabetes: Practical Advice for Caring for You and Your Loved One (Caregiver's Guides) 9781648765735, 1648765734

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Production Editor: Melissa Edeburn Author photograph courtesy of Danny Bae. ISBN: Print 978-1-64876-573-5 | eBook 978-1-64876-574-2 R0

To Mom, Dad, Chelsea, and Mike. Thanks for being my backbone since my diabetes diagnosis in 2012. Your love and support have been invaluable and a true inspiration to this book.

Contents INTRODUCTION PART 1: UNDERSTANDING DIABETES CHAPTER 1:

Diabetes Explained

CHAPTER 2:

A Caregiver’s Journey Begins

PART 2: CARING FOR SOMEONE WITH DIABETES CHAPTER 3:

Medications and Treatments

CHAPTER 4:

Supporting Healthy Lifestyle Changes

CHAPTER 5:

Common Daily Living Changes

CHAPTER 6:

Financial Decisions and Insurance

CHAPTER 7:

Long-Term Caregiving Help

PART 3: CARING FOR YOURSELF CHAPTER 8:

How Caregiving Affects You

CHAPTER 9:

Work-Life Balance

CHAPTER 10:

Staying Healthy and Resilient

RESOURCES REFERENCES ACKNOWLEDGMENTS ABOUT THE AUTHOR

Introduction f you are reading this book, you are probably close to someone who has been diagnosed with diabetes, an event that can be shocking and overwhelming for everyone involved. Diabetes is a condition that impacts so many different areas of one’s life, including what someone eats as well as how they feel, sleep, think, and much more. As a caregiver for someone with diabetes, you probably have a lot of unanswered questions. Commonly, people want to know why this situation happened, how it happened, and if there was anything they could’ve done differently to have prevented the diagnosis. This book will help answer your questions and provide you with real-life applications to support you in your caregiving journey. Right now, you may be inundated with medical paperwork, educational handouts, healthcare provider’s appointments, and endless prescription refills. You may be losing sleep because you are worried about whether your loved one will be okay. You may be distracted during the day and unable to focus on anything else without worrying if your loved one is alive and well. Taking care of someone with diabetes is a long-term commitment that can be tiring and emotionally draining. As a caregiver, you may be so focused on the health and well-being of your loved one that you end up overlooking your own care. This book will help empower you to be a source of compassionate and inspirational support for the person in your life with diabetes while taking proper care of yourself.

I

As a person living with type 1 diabetes, I have some insight into what you and your loved ones could be feeling right about now. When I was diagnosed in 2012, I felt isolated and overwhelmed. I didn’t know anyone else with diabetes. My whole world flipped upside down when my healthcare provider’s lips rattled off the words, “You have type 1 diabetes.” I learned early on that diabetes isn’t just about exercising, making dietary modifications, and taking medication. Having this condition is so much more than all these things. And because each person’s diabetes is different, no one approach is perfect for everyone. Every day is a balancing act of managing blood sugars as well as mental and emotional health. When people say, “Oh, it’s just diabetes,” they don’t see the intricate thought processes and decisions that go into keeping blood sugar levels in range. Learning how to manage everything is a lot for one person to handle alone. If I have learned anything in my years of living with diabetes, it is this: Those with this condition need a strong support system. My family and friends have been an important asset to my diabetes care team. They know and understand I may need a break for a snack if we are outside walking, and they don’t pressure me when I decline seconds at the dinner table. My diagnosis ultimately inspired me to pursue a career as a registered dietitian, which has allowed me to work with hundreds of people with diabetes and their families to increase their understanding of diabetes management. I have helped them apply the education they receive from their healthcare providers to their own lives so they can feel confident in their diabetes management. As soon as one hears their loved one has been diagnosed with diabetes, they typically want to spring into action and support them,

but figuring out where to start can be difficult. This book is intended for caregivers of adults, but caregivers of children and adolescents may find some information here applicable as well. This book will act as a support guide for helping you understand the ins and outs of diabetes, whether the diagnosis is prediabetes, type 1, type 2, or gestational. I provide practical tips throughout this book, so you know exactly what to say, what to do, and what to ask. Everything you will learn can be applied to daily life in supporting your loved one and taking care of yourself. As you continue on your caregiving journey, recognize the selfless acts of kindness you are doing day in and day out. You may feel overwhelmed at times, and that’s okay. Find ways to replenish your energy and take care of yourself from the inside out.

PART 1

UNDERSTANDING DIABETES

W

hen someone you love gets diagnosed with a serious condition like diabetes, you may feel scared or worried.

Whether you are first hearing about diabetes or already know someone who has it, a gut-wrenching question may crop up and linger in the back of your mind: “Will they be okay?” The first step to becoming a supportive caregiver is taking time to understand what diabetes is and what it is not. This section discusses how diabetes affects the body, reviews common misconceptions about the condition, and examines what your role may be. Having a solid understanding about diabetes will help you be a better advocate and caregiver for your loved one.

CHAPTER 1

Diabetes Explained

O

n the night before Hector’s 50th birthday, his phone started ringing. Maria didn’t see her husband around, so she decided

to answer the phone. It was Hector’s healthcare provider and he wanted to review Hector’s recent blood work. The healthcare provider said, “Hi Maria, I am Dr. Luca Rodriguez. I wanted to discuss Hector’s blood work from the other day. The results show that he has type 2 diabetes.” Maria’s heart dropped into her stomach, her palms started to get sweaty, and her mind began racing at a mile a minute. Maria then heard Dr. Rodriguez say, “Hello? Maria? Are you still there?” Maria took a deep breath. “Yes, I’m still here. Type 2 diabetes? What does that mean? How did he get this condition?” she asked. Hector has always been an active person. He worked in construction for 17 years and was the kids’ soccer coach from the time they were very young. How could her darling husband be diagnosed with diabetes? Was it something she did?

Dr. Rodriguez said he would be writing a prescription for something called metformin and that Hector would need to take this medication twice a day with food. He also said Hector was to avoid eating carbs. He told Maria to call if they had any questions. Before she could ask if Hector could still have a piece of birthday cake the following day, the phone went silent. Hector emerged from the other room and Maria was faced with the daunting task of breaking the news to her husband. Maria knew right then and there that things would never be the same.

Diabetes Defined Diabetes is a condition that affects how one’s body turns the food they eat into the energy it needs to function on a daily basis. Just like a car, the body needs fuel to function. Instead of gasoline, your body’s preferred source of fuel is carbohydrates, which the body digests and breaks down into glucose. This glucose then goes into the bloodstream to be either used immediately or stored for later. When you hear someone talk about “blood sugar,” this glucose is what they are referring to. The amount of glucose in one’s bloodstream is regulated by various hormones, the most important being insulin. Produced by the beta islet cells of the pancreas, insulin acts like a key to unlock these cells and allow in glucose from the bloodstream. When the level of glucose in the blood rises after eating, insulin is then released from the pancreas in response so the cells can use the glucose for energy. When a person has diabetes, their body either does not make enough insulin or cannot use the insulin it makes as well as it should. When there isn’t enough insulin or the body stops

responding to insulin, too much glucose will stay in the bloodstream, causing high blood sugar levels. Although no cure exists for diabetes, medications or dietary modifications, or both, can significantly reduce the impact of the condition. Prolonged elevated blood sugar levels can have a serious negative impact on one’s health if left untreated. Heart disease, kidney disease, or vision impairments are some of the common effects of uncontrolled diabetes. None of this information, though, is meant to cause fear or worry. I am here to tell you that if your loved one has diabetes they can continue to live a long, healthy life, free of complications.

Common Causes Diabetes does not discriminate. It affects people of every race, gender, and ethnicity. Certain genetic predispositions and environmental factors have been linked to diabetes, but the exact ways such factors contribute to the development of diabetes is not known. For some, diabetes or insulin resistance may develop after the prolonged use of certain medications, like steroids or chemotherapy. Others may develop diabetes after a surgical intervention that includes removing any part of the pancreas. Because diabetes impacts the amount of sugar in the blood, people often think the condition results from eating too much sugar. A diet high in added sugar may increase someone’s risk of type 2 diabetes, but sugar is just one piece of the puzzle. Many other factors, including overall diet, lifestyle, and genetics, also impact one’s risk. Being overweight is a risk factor for developing type 2 diabetes, but other risk factors include lack of physical activity,

family history, ethnicity, and age. Plenty of people who eat a wellbalanced diet and are at a normal weight still develop diabetes.

Types of Diabetes Diabetes is not just one condition. Multiple forms of diabetes exist, with each one different in how an individual can or cannot produce or use insulin. Some with diabetes do not produce insulin at all, whereas others are able to produce insulin but not use it efficiently. TYPE 1 DIABETES Type 1 diabetes is an autoimmune condition wherein the body attacks the insulin-producing cells, or beta islet cells, of the pancreas with antibodies. The immune system mistakenly destroys the insulin-producing cells in the pancreas instead of the harmful bacteria and viruses it usually fends off. This situation causes irreversible damage to the pancreas, which loses its insulinproducing function. A person with type 1 diabetes must rely on insulin injections to control their blood sugar levels. Although the exact cause of type 1 diabetes remains unknown, a number of risk factors may contribute to developing the condition. They include the following: Family history: Having a parent or sibling with type 1 diabetes increases the risk of developing type 1 diabetes. Genetics: Prevalence of certain genes is linked to a higher risk. Age: Type 1 diabetes used to be called juvenile diabetes because it typically develops during childhood or adolescence. Type 1 diabetes, though, can appear at any age. It most commonly appears between the ages of 4 and 7 and the ages of 10 and 14. As many as half the

people with type 1 diabetes are not diagnosed until adulthood. Environmental factors: These factors may include viral infections, medication use, stress or trauma, and geographic location. Other autoimmune conditions: Having multiple sclerosis, pernicious anemia, lupus, celiac disease, and thyroid diseases increases risk. Some common symptoms of type 1 diabetes include the following: Increased thirst Frequent urination Extreme hunger Unintended weight loss Fatigue and headaches Bed-wetting in children and adolescents Blurry vision Changes in mood or behavior PREDIABETES Before receiving a diagnosis of diabetes, some may be considered to have prediabetes. Prediabetes is a condition wherein blood sugar levels are elevated, but not enough for a diagnosis of diabetes. Because prediabetes typically has no symptoms, many live with it without knowing, making yearly medical check-ups with routine blood work important. If your loved one has prediabetes, they will not necessarily develop diabetes. Small lifestyle changes like modifying diet, increasing exercise, managing stress levels, and prioritizing sleep can have a significant impact on delaying or preventing the

development of diabetes. TYPE 2 DIABETES Type 2 diabetes is a result of a number of problems that increase insulin resistance. It begins when the pancreas produces insulin, but the cells are no longer able to use it and become resistant to it. When the body starts to show this resistance, it’s like the locks were changed and no one told the pancreas to make a different key. As a result, the pancreas starts producing more and more insulin to compensate for increased blood sugar levels. During this process, called hyperinsulinemia, blood sugar levels will appear normal despite the overproduction of insulin. The pancreas will continue to produce more and more insulin until it becomes fatigued and stops producing insulin altogether. Type 2 diabetes develops, and blood sugar levels become elevated. The progression of type 2 diabetes is often slow; the prediabetes phase can last from 5 to 10 years before blood sugar levels are high enough to enable a diagnosis of diabetes. Many factors may increase one’s risk of developing type 2 diabetes. Age: Adults over the age of 45 are more likely to develop type 2 diabetes. However, it can develop during adolescence. Race or ethnicity: American Indians, Blacks, Hispanics, Latinxs, and Pacific Islanders have a heightened risk for developing type 2 diabetes. Family history: Risk increases if a parent or sibling develops type 2 diabetes.

Lack of physical activity: Physical activity helps regulate blood sugar levels, making cells use insulin more efficiently. The less active someone is, the greater their risk of developing diabetes. Stress hormones: Although stress does not cause diabetes, researchers believe that high levels of stress hormones may lead to insulin resistance and that they may be a contributing factor to the progression of type 2 diabetes. Weight: Being overweight or obese increases risk for developing type 2 diabetes. However, not everyone who is overweight or obese will develop diabetes and vice versa. Other medical conditions: High blood pressure, high cholesterol, elevated triglycerides, prediabetes, gestational diabetes, and polycystic ovarian syndrome (PCOS) may increase the risk. Some common signs of type 2 diabetes include the following: Increased thirst Frequent urination Extreme hunger Unintended weight loss Fatigue and frequent headaches Darkened skin around the armpits and neck Blurry vision Slow-healing wounds or sores Changes in mood or behavior GESTATIONAL DIABETES

Gestational diabetes is a type of diabetes that occurs during gestation, also known as pregnancy. During pregnancy, the placenta will release hormones that cause glucose to build up in the blood. The pancreas is usually able to produce enough insulin to offset the rise of glucose in the blood, but sometimes it just can’t keep up. When it can’t, elevated blood sugar levels result and, eventually, so will a diagnosis of gestational diabetes. Typically, gestational diabetes will go away almost immediately after baby’s birth. However, women who have had gestational diabetes are at an increased risk for developing type 2 diabetes later in life. Risk factors for gestational diabetes include the following: Age: Adults over the age of 25 are more likely than younger adults to develop gestational diabetes. Race or ethnicity: American Indians, Blacks, Hispanics, Latinxs, and Pacific Islanders have a heightened risk. Family history: Risk increases if a parent or sibling develops type 2 diabetes. Lack of physical activity: Physical activity helps regulate blood sugar levels because cells use insulin more efficiently. The less active someone is, the greater their risk of developing diabetes. Stress hormones: Although stress does not cause diabetes, researchers believe that high levels of stress hormones may lead to insulin resistance and that they may be a contributing factor to the progression of type 2 diabetes. Weight: Being overweight or obese increases risk for developing type 2 diabetes. However, not everyone who is overweight or obese will develop diabetes and vice versa.

Other medical conditions: Risk increases for someone who has had gestational diabetes or who has elevated triglycerides, high blood pressure, high cholesterol, polycystic ovarian syndrome (PCOS), or prediabetes. Symptoms of gestational diabetes include the following: Increased thirst Frequent urination Extreme hunger LESS COMMON FORMS OF DIABETES Less common forms of diabetes are often misdiagnosed as type 1 or type 2 diabetes. Monogenic diabetes: This rare type of diabetes is caused by a single gene mutation. There are two main forms of monogenic diabetes. Maturity onset diabetes of the young (MODY) is typically diagnosed in early childhood or adulthood and can run in families. Neonatal diabetes is typically diagnosed during infancy. Latent autoimmune diabetes in adults (LADA): This form of type 1 diabetes has a slow progression and is typically diagnosed in adulthood. It is caused by an autoimmune response. Pancreatogenic diabetes (type 3C diabetes): This form of diabetes results from pancreatic diseases, including cystic fibrosis, pancreatic cancer, and pancreatitis, or is related to surgery on the pancreas. Drug-induced diabetes: This form of diabetes may develop after medication treatment of HIV/AIDS, steroid treatment, and some chemotherapies.

What to Ask Your Healthcare Provider How often should we make follow-up appointments? Is it necessary to make an appointment with an endocrinologist, a doctor specializing in hormone-related conditions, including diabetes? How often should we get blood work? Were any other lab tests—such as cholesterol, kidney, liver function, thyroid, or triglycerides—abnormal? What is the target range of blood sugar levels? What should we do if blood sugar levels are too high or too low? What are some of the possible side effects of medication use? What signs and symptoms should we look out for?

Diagnosis and Next Steps Diabetes can be diagnosed in a number of ways. The primary care physician or other medical practitioner may notice abnormal blood work results, but other healthcare providers may discover elevated glucose levels when ordering routine lab tests. If the healthcare provider determines that blood sugar levels are very high and other symptoms of diabetes are present, a second test to diagnose may not be required. Usually, however, a healthcare provider will recommend looking at one or more of the following blood tests to determine whether diabetes is present: Fasting plasma glucose (FPG): This blood test will check fasting blood sugar levels. This test is usually conducted when in the fasted state, not eating or drinking (except water) for at least eight hours before the test. It is typically conducted in the mornings before

eating breakfast. Diabetes can be diagnosed if fasting blood sugar levels are greater than or equal to 126mg/dL (7.0mmol/L). Oral glucose tolerance test (OGTT): This test measures how well the body is processing sugar, or glucose. The patient’s blood sugar level is first determined, then they are given a sugary drink. The blood sugar level is then tested again one hour later and then two hours later. This test is often used for diagnosing gestational diabetes, but can be used to diagnose other types of diabetes as well. Diabetes can be diagnosed if the blood sugar level after 2 hours is greater than or equal to 200mg/dL (11.1mmol/L). Random (or casual) glucose test: This test is given at a random point during the day and is often the first test the healthcare provider will use if they suspect diabetes is present. Depending on the result, they may recommend further testing. With this test, diabetes can be diagnosed with a blood sugar level of greater than or equal to 200mg/dL (11.1mmol/L). Hemoglobin A1C (HbA1c): This test measures the amount of glucose in the bloodstream by measuring the amount of hemoglobin, a protein in red blood cells. Glucose entering the bloodstream attaches to hemoglobin molecules. Although everyone has some glucose attached to hemoglobin, people with elevated blood sugar levels have higher concentrations. This test measures the percentage of red blood cells that have glucose-covered hemoglobin. HbA1c has several advantages over other tests because results are not impacted by stress, diet, or other lifestyle factors. The other tests mentioned above offer only a snapshot of blood sugar levels at a specific point in time. HbA1c measures average glucose levels from the previous two to three months, the average lifespan of red blood cells. It allows healthcare providers to

assess overall blood sugar control over a period of time. However, HbA1c results may be influenced by race, ethnicity, and red blood cell or hemoglobin conditions. The test does not measure the dayto-day variability of blood sugar levels. When someone you love is diagnosed with a chronic condition like diabetes, both of your lives will be affected. Roles and routines will change. Your loved one may mourn their loss of independence. You may feel stressed and overwhelmed by the care needed to support your loved one. During this time, be sure to recognize your thoughts and feelings. You may experience anger, anxiety, depression, fear, guilt, and sadness. These feelings are normal responses to stress. Take time to talk to someone to help defuse some of these emotions. Just talking about the situation may make it seem more manageable for all. After providing the diagnosis, your healthcare provider will likely set up a treatment plan. For many, it includes checking blood sugar levels throughout the day; it may include taking medications. The frequency of blood sugar checks as well as the type and frequency of medication will vary. You can also expect to be referred to specialists. Your healthcare provider may recommend following up with a diabetes educator, registered dietitian, and social worker.

Diabetes Complications Having diabetes increases the risk for developing other serious health problems. Heart disease: Diabetes increases the risk of various heart conditions, such as coronary artery disease, heart attack, high blood pressure, and stroke.

Kidney disease: Diabetes can damage the filtration system of the kidneys, which removes toxins from the blood. Severe kidney damage can lead to kidney failure or end-stage kidney disease, which may require dialysis treatments. Nerve damage: Persistent elevated glucose levels can injure blood vessels and cause poor blood circulation. This situation leads to tingling and numbness often in the arms and feet. If left untreated, all sense of feeling in affected limbs can be lost. Vision impairments: Diabetes can cause damage to the retina and the small blood vessels of the eye, which can lead to blindness. People with diabetes have an increased risk of developing cataracts and glaucoma. The best way to keep complications at bay is to follow the treatment plan the diabetes care team has provided and to take any precautionary measures. Keeping blood sugar levels within the goal range that the healthcare provider establishes, making necessary lifestyle changes, and proactively maintaining overall health are imperative for delaying or preventing complications. Lifestyle changes may include eating a healthy diet and exercising regularly to make blood sugar levels easier to manage. Maintaining overall health may involve keeping up with routine healthcare visits to a cardiologist, diabetes educator, dietitian, endocrinologist, neurologist, ophthalmologist, and podiatrist and getting routine blood work to check cholesterol levels and kidney function. Bringing greater awareness to potential risk factors and being proactive in diabetes management can reduce potential long-term complications.

How Are You Doing? Hearing a diabetes diagnosis for your loved one may represent a big transition period in your life. The relationship between you and your loved one may change. Easing into this transition may take time and come with an increased need for communication. As time progresses, you will be able to better identify your role in your loved one’s diabetes management. In the meantime, take some time to practice some mindfulness techniques. Create your own self-care toolbox by making a list of things to help you relax. Think of some of your favorite activities—can you call a friend, get outside, read a

book, or meditate? Having ways to take a break from the strain of taking care of someone with diabetes is just as important as your loved one taking care of themselves. The emotional and physical demands involved with caregiving will strain even the most resilient people. Take time to take care of yourself or you won’t be able to take care of anyone else.

Key Takeaways A diagnosis of diabetes can be given to anyone at any age and oftentimes is inevitable. Don’t blame yourself for what you could’ve done. Although many complications are associated with diabetes, most can be prevented or avoided. Keep up with your loved one’s healthcare provider appointments and blood work and be open with the care team about what is and is not working. You will experience new emotional and physical demands when taking care of someone with diabetes. Remember that it is just as important to take care of yourself and your own health as it is to take care of your loved one.

CHAPTER 2

A Caregiver’s Journey Begins

J

ill just finished moving her daughter Jenny into her freshman dorm room at college. Jenny has been living with type 1

diabetes since she was six years old. Both Jill and Jenny have been preparing for this moment their whole lives. Jill has slowly been training Jenny on her diabetes self-care, even when it felt easier to just do it herself. Whereas Jenny did most of her diabetes management herself, Jill was always there to supervise. Jill is feeling anxious knowing her daughter will now be more than a five-hour drive from home. But she knows that Jenny is prepared to finally take complete ownership of her diabetes. The time they’ve spent training and discussing different scenarios has taken away a lot of Jill’s worries. She knows Jenny is able to test and track her blood sugar levels, order supplies, make healthcare provider appointments, and keep track of insurance claims. Before the big move, Jill and Jenny sat down and created an agreement in which they both committed to regularly communicate either by phone, email, or text message to discuss blood sugar levels and diabetesrelated concerns. Jill knows that she and her daughter will talk more in between calls, but she has peace of mind knowing they have a designated time to discuss only diabetes.

Changing Relationships A loved one being diagnosed with diabetes can be stressful and draining for everyone involved. You might find that your world is suddenly shaken up and you are forced to shift your focus from worrying about your usual life to being overwhelmed with new terminology, healthcare provider’s appointments, and medication changes. Many people who receive a diabetes diagnosis try to simply live with it as a part of their daily lives, without fully acknowledging the emotional, mental, and physical toll this new situation can take. But though your loved one now has diabetes, they are still the same person they always have been. A diagnosis is not the end of life as you both may know it; it’s simply the beginning of a new way of living and thinking. This changed reality will involve lots of waiting rooms, new medications, and many healthcare practitioners. It can be a lot for one person to handle, which is why it’s important for you to be there for your loved one throughout their journey. As with most things in life, the goal with diabetes caregiving is to maintain balance. For changing relationships, then, you’ll want to respect your loved one’s choices, be a source of support, and take care of yourself. Your loved one’s condition may take an emotional or physical toll or create conflicts, but you can offer encouragement while finding ways to cope yourself. Offering self-care along the way will allow you to stand strong for your loved one, which will give them the strength and inspiration they need for their journey. Every caregiver wants their loved one to live a long, healthy life and avoid long-term complications. With diabetes, the risk of complications will rise when blood sugar levels aren’t managed over long periods of time. Watching your loved one continuously make

unhealthy lifestyle choices or avoid their diabetes care altogether can be frustrating, especially knowing what they’re doing or not doing will eventually put them at risk for developing complications. As difficult as this situation may be to watch, try not to nag them, for example, saying, “Why did you eat that?” or “What did you do to end up with that blood sugar level?” Sometimes, there is no rhyme or reason as to why blood sugar levels behave the way they do. Your loved one could have followed all their healthcare provider’s orders but still ended up out of range. Diabetes is a demanding condition to manage—it is present 24 hours a day. People who have diabetes must constantly watch what they eat, regularly check their blood sugar levels, and possibly take medication to keep those levels steady, and this care is just the tip of the iceberg! You can support someone with diabetes by offering to take some of the load off their back. This help may be as simple as offering to pick up medications from the pharmacy, calling their insurance company to check benefits, or simply taking notes at their healthcare provider’s appointment. These tasks don’t go unnoticed and can significantly help your loved one. Another way to support them is to encourage a healthy lifestyle with better meal choices and follow this healthy way of eating right alongside them. Join them in experimenting with wholesome, diabetes-friendly recipes you both can enjoy. Having “special” food prepared can feel so isolating, and planning and preparing multiple meals can be stressful, so work together to come up with meals that are more nutritious for everyone in the family to enjoy. If you usually aren’t the one in charge of preparing meals, offer to help with the grocery list or start getting involved.

Diabetes is not a cookie-cutter condition. Every day will have a new set of victories or challenges. The way diabetes impacts your day-to-day life may not be the same as it is for others, and that’s okay. That you and your loved one have consistent and open communication about what is and isn’t working will help you as the caregiver define your own unique role in this ever-evolving relationship.

What to Do Sit down together and write out your daily routines and responsibilities. Is there anything you can take on to potentially lighten their load? Make a list of things that make your loved one feel happy and relaxed. If you notice your loved one is feeling frustrated or overwhelmed, refer to this list. Thinking about what someone may need in a difficult moment can sometimes be hard, and this list will come in handy more often than you might think. Talk to your loved one about what they are thinking or feeling. You may feel pulled to assume what their needs are, but allowing them to vocalize what it is they need will make them feel more independent in their care and will help with communication between both of you. If you are feeling burned out or overwhelmed with the changing of roles, try confiding in a support group, friends, family, or therapist.

Long-Distance Caregiving As much as you may want to support your loved one around the clock, you might not be able to physically be there all the time. You may live in another town or another state, which may prevent you from visiting your loved one as often as you would like. Other circumstances may limit the frequency of your visits, such as a

demanding job, a family of your own, or even visitation restrictions during a pandemic. Just because you cannot physically be with your loved one doesn’t mean you can’t offer support. You can still do a number of things to support your loved one through long-distance caregiving. Check-in calls/texts: If you cannot visit your loved one in person, check in with them by calling or texting. Use calls for more than just checking in on their diabetes management. A simple phone call or text in the morning asking how they slept or in the evening asking how they are feeling can be a great way to show your support. Consistent communication with your loved one can offer emotional support that they may not be receiving otherwise. Delivery services: Ensuring that your loved one has access to nutritious meals can really help them with managing their health. A number of food delivery services are available to make preparing meals a little easier for your loved one, improve their nutritional status, and alleviate your worries about what they are eating. Delivery services also help with groceries, prepared meals with cutup ingredients, or meals that just need to be heated up and served. These services can be a convenient way for you to ensure your loved one’s meals are taken care of. Connect: Make connections with neighbors or friends of your loved one. These individuals may be able to give you more insight on what you can do to assist. They may also be available to check in with your loved one if you are unable to visit.

Financials: Paying bills and keeping track of payments can be a big stressor on your loved one. You can alleviate some of the stress by helping them organize their financials. Perhaps you could have their bills forwarded to your address, arrange for automatic payments, or pay the bills online. Insurance: You can support your loved one by taking time to call their insurance provider to review their benefits and coverage. Care conferencing: If you are unable to attend healthcare provider visits or other healthcare appointments, you can request a care conference to review your loved one’s health status. This meeting is usually with the healthcare provider, social worker, and other professionals. You may also request that any healthcare providers call you during appointments in order to stay up to date with your loved one’s care.

What to Do Make a list of potential tasks that can be done remotely. If you and your loved one are physically separated, you can still act as a major part of their support system. Nowadays, most bills can be paid remotely if you have an internet connection. Ask your loved one what they need help with and offer to take some of these responsibilities off their plate. Listen to when your loved one is speaking. If they constantly say they have everything under control and everything is fine, do some digging and ask when they last mowed their lawn or went to the grocery store. You may find that they are not able to mow the lawn without their blood sugar going low, or they are worried about being high risk and don’t want to venture out to the grocery store. Offer to take some of these tasks off their plate or help organize someone who can assist.

Visit with your loved one as often as you can. You will find that you get a truer depiction of how they are doing in person than from what they are reporting to you. If visiting is not an option, try finding someone who can check in on them when you are not able to, such as a friend, neighbor, or family member.

Working with a Diabetes Care Team Today, more than 30 million family caregivers play major roles in overseeing and promoting the health and quality of life of individuals with acute and chronic conditions. Caregivers have a significant role in the everyday lives of their loved one. As a caregiver, you also have an important role within the diabetes care team. This interdisciplinary team is usually composed of healthcare providers, nurses, nurse practitioners, physician’s assistants, dietitians, pharmacists, diabetes educators, and mental health professionals. Not all of these individuals will be on any one care team. The diabetes care team is available to help manage diabetes and the overall health of your loved one. However, the two most important parts of this team are you and your loved one. The diabetes care team sees only a snapshot of what day-to-day life is. Be sure to be transparent with the care team about what is and is not working with your loved one’s current care plan. Let’s look at some of the most common professionals who may serve on a diabetes care team: Certified diabetes care and education specialist (CDCES): This specialist is usually a clinical psychologist, healthcare provider, pharmacist, registered dietitian, or registered nurse. However, other healthcare disciplines may be involved, such as occupational therapists, physical therapists, or social workers. A CDCES has achieved this specialized credential by passing a national exam and

completing diabetes-specific continuing education each year. Beyond diabetes education, these specialists provide clinical care in a variety of settings to support the behavioral, mental, and physical health of people with diabetes throughout the life cycle and development of the condition. Endocrinologist: This specialized physician has received extensive training in understanding, diagnosing, and treating conditions related to the endocrine system, like diabetes. These physicians usually have up-to-date training on the latest advancements in treating diabetes and are knowledgeable about new medications, the latest research findings, and emerging trends. Pharmacist: A pharmacist has an important role in helping individuals and healthcare providers select medications to manage blood sugar levels and minimize side effects. They also have a high level of understanding of how medications interact with one another, which can be important if your loved one is taking medications for other health conditions, like kidney or heart disease. Primary care physician (PCP): This general family healthcare provider likely has a general understanding of diabetes and is familiar with common medications. Some PCPs have advanced knowledge of diabetes and are up to date on newer medications and the latest research studies. Psychologist: This specialist can help with addressing emotional reactions like guilt or disbelief that can come with new chronic conditions. They also can teach effective strategies for diabetes selfmanagement, like coping with needing to take medications and check blood sugar levels.

Registered dietitian (RD/RDN): This practitioner is an expert in nutrition. Some dietitians are generalists, whereas others are specialists or have advanced credentials. Dietitians can help with understanding how food impacts blood sugar levels and provide guidance for planning healthy meals, counting carbohydrates, and implementing behavior strategies. Social worker: This professional may be able to help with finding resources for medical or financial needs. Social workers also have training in family, group, or individual therapy and may be able to offer coping mechanisms or ways to find support groups in the community. As you can see, every discipline brings their own unique perspective and background to diabetes management. Working with a diverse diabetes care team can have many advantages when done successfully. Interdisciplinary care teams should meet regularly to collaborate on patient care and communicate effectively. However, if the care team demonstrates a lack of communication and collaboration among all or most of its professionals, you may ask the social worker or case manager to organize a care team meeting where all disciplines are present. Doing so will allow everyone on the team to be on the same page and should clear up any questions or concerns.

What to Do Keep a list of current medications, dosages, and frequency taken on a notepad or on a list on your phone. Update this list as soon as medications are started, changed, or stopped. Sometimes the medications can explain why your loved one is sick or feeling a certain way, especially if one medication is interacting with another.

Keep a running list of questions that come up between appointments. During the session, you may feel overwhelmed with information and forget about the things that have come up day to day. Keeping a list of questions will help you get the most out of your appointment and will ensure you have the information you need. Offer to take notes during sessions so your loved one can pay attention during the meeting. You both will have a chance to reflect back on the notes if any questions come up after the session.

What to Ask Your Care Team How frequently should my loved one be seen? What are the current laboratory results? What do they mean? How long will getting results take? Should we be seeing an endocrinologist or any other specialists? How do I assess how well treatment is going at home? What are some side effects of the current medications? What types of behaviors should I look out for at home? What should we do in case of an emergency? Are there any caregiver resources available?

How Are You Doing? When someone you love is diagnosed with a chronic condition like diabetes, you may have the urge to start helping right away. You may be spending hours upon hours talking to healthcare providers or other care team professionals trying to get answers to burning questions. You may be staying up until the wee hours of the morning searching the internet and scared for your loved one. At this point,

you may be feeling a lot of strong emotions—like being overwhelmed or shocked—and that’s okay. Take a moment to pause and allow yourself to truly recognize the shift in your relationship with your loved one. Taking things slowly and not overhauling your life overnight is okay. The early stages of a new diagnosis have a steep learning curve. With time, you will be reading and hearing more about diabetes and figuring out how managing it looks for you and your loved one. There will be mistakes. There will be things that are overlooked. But there will also be many wins and successes. You are not expected to become a diabetes expert overnight. Give yourself some grace and use every day as a new learning opportunity. Diabetes management is a marathon, not a sprint. Don’t burn yourself out by trying to do everything at once. In time, everything will work out.

Key Takeaways With a new diagnosis of diabetes, the relationship you have with your loved one will likely change in some way, but they are still the same person you know and love. This diagnosis can allow you to develop or strengthen a special bond. Open communication with your loved one will make caregiving easier on both of you. Caregiving doesn’t always look the same day to day, so be open with your loved one about what their needs are. The same goes for you. If you are burned out or overwhelmed, be sure to communicate how you’re feeling with your support person.

Healthcare provider’s appointments can be overwhelming. Taking notes and asking questions can really help you get the most out of your appointment time.

PART 2

CARING FOR SOMEONE WITH DIABETES

W

hen you are caring for someone with diabetes, you will quickly realize that no two days are exactly alike. Even if your

loved one takes the same medication doses, eats the same amount of food, and exercises the same amount of time, their blood sugar levels may still vary from what they were the day before. As their caregiver, understanding the different aspects of diabetes management is important. This section touches upon medications and treatment, daily living changes, finances and insurance, and what to prepare for as your loved one gets older.

CHAPTER 3

Medications and Treatments

N

ancy and Jim have been married for over 25 years. Though Jim was diagnosed with diabetes 15 years ago, he always told

Nancy not to worry about him, that he knew what he was doing. Nancy was not aware of the serious nature of his condition, but knew he was taking his pills and watching what he ate. It wasn’t until they went to their annual healthcare provider’s visit that she realized her husband’s condition was a lot more serious than she had realized. Though Jim had been taking his medication and watching his diet, his blood sugar was dangerously high. The healthcare provider was very concerned and told Jim it was time to go on insulin injections to manage his blood sugar. Jim responded with anger and completely tuned out the rest of the appointment. Nancy then jumped in and asked the healthcare provider a bunch of questions. “How many units? How often? What time of day? How frequent? Will we be able to get these at the pharmacy? Are there any side effects?” She didn’t know where these questions were coming from, but she knew she needed to play a bigger role in her husband’s condition.

Common Medications and Treatments

As you learned in chapter 2, having diabetes means the body either does not make enough insulin or cannot use the insulin it makes as well as it should, resulting in too much glucose (or sugar) remaining in the bloodstream and leading to high blood sugar levels. If the rise in blood sugar levels is too high or cannot be controlled with diet and other self-care measures, your loved one will most likely need to take medication and regularly check their blood sugar levels. The type and frequency of medication will depend on the type of diabetes, how well their body utilizes insulin, their past medical history, blood sugar levels, and their individual diabetes management goals. Remember, the best diabetes treatment is the one that does not cause side effects, leaves your loved one feeling energized, and helps keep their blood sugar levels within range. BLOOD SUGAR MONITORING Testing blood sugars is an important part of diabetes care to detect if levels are too high or too low and to monitor the effects of diet, exercise, and other lifestyle factors. Regular testing also helps the healthcare provider determine if medication adjustments are needed. Most people with diabetes use a device called a blood sugar monitor or blood sugar meter that uses a small drop of blood to check blood sugar levels. This device provides a measurement for a single point in time. Some, though, prefer for a variety of reasons to use a device called a continuous glucose monitor (CGM), which has a small sensor under the skin to measure blood sugar levels every few minutes. With a CGM, the user will also will receive alerts if the blood sugar level is too high or too low. No matter how blood sugar

is tested, it is important that the person with diabetes monitors their blood sugar levels according to their care team’s orders. INSULIN The most common diabetes medication is insulin, which acts as a replacement or supplement for the pancreas’s insulin production. Though typically prescribed to individuals with type 1 diabetes, insulin may also be used by some individuals with type 2 or gestational diabetes. Those with type 1 diabetes cannot produce insulin on their own, so they need to get their insulin elsewhere. People with type 2 diabetes may need to supplement with insulin injections because their cells are exhausted and burned out; their bodies may not be producing as much insulin as they need to control blood sugar levels. A number of different insulins try to mimic the function of the pancreas, but insulin types differ based on how fast and how long they work. Some with diabetes may only need one insulin injection a day, whereas others may need multiple injectable shots throughout the day. Some may be taking only long-lasting insulin, whereas others use a combination of rapid-acting and long-lasting insulin. Figuring out the right type, frequency, and dosage of insulin may require some trial and error while the healthcare provider and diabetes care team work toward controlling your loved one’s blood sugar levels. The amount and frequency of insulin needed on a daily basis depend on factors such as diet, level of physical activity, and average blood sugar levels. The most common types of insulin include:

Ultra-rapid-acting insulin: begins working within 2.5 to 5 minutes after injection and stays active for 2 to 4 hours. This insulin is often used at mealtimes or 20 minutes after eating. Rapid-acting insulin: begins working within about 15 minutes after injection and stays active for 2 to 4 hours. This insulin is often used before mealtimes. Short-acting insulin: begins working 30 to 60 minutes after injection and stays active up to 5 to 8 hours. This insulin is often injected prior to mealtimes, but is slower to start working than rapid-acting insulin. Intermediate-acting insulin: begins working 1 to 2 hours after injection and stays active for 12 hours. This insulin isn’t commonly used, but the healthcare provider may prescribe it. Long-acting insulin: begins working 1 to 2 hours after injection and stays active for 24 hours. This insulin is considered to be “background” insulin to mimic the pancreas’s function of producing small amounts of insulin throughout the day. INSULIN PUMPS AND INJECTIONS Those taking insulin will need to inject it with a vial and syringe or pre-filled pen, or they will need to use an insulin pump. Your loved one may need to take multiple needle sticks throughout the day to manage their blood sugar levels. They should have a good understanding of how the regimen works because they will often be calculating their dosing themselves. An insulin pump is a small medical device that delivers insulin through a tube or cannula under the skin. These devices work by releasing a steady-flow, fast-acting insulin throughout the day called “basal insulin.” They will also deliver an extra dose, called a “bolus,”

of fast-acting insulin at mealtimes. The advantage of using an insulin pump over traditional shots includes fewer needle sticks, more precise dosing increments, and flexibility with exercise. Insulin pumps are individually programmed for insulin needs, which reduces time spent calculating dosages. Some insulin pumps will even automatically give you insulin if your blood sugar is high and suspend insulin delivery if your blood sugar is low. Insulin pumps can be a great tool in diabetes management, but there are some drawbacks to the technology. Should the pump malfunction and stop delivering insulin, the person with diabetes is at a heightened risk for high blood sugar or diabetic ketoacidosis, a serious complication that occurs when the body produces high levels of blood acids called “ketones” in the absence of insulin. Some also find the device and tubing to be inconvenient or constantly getting in the way. Above all, insulin pumps are technology devices that do not preclude the brain power needed in managing diabetes. ORAL MEDICATIONS AND NON-INSULIN INJECTABLES For those with type 2 diabetes or insulin resistance, their healthcare provider may prescribe oral or non-insulin injectable medication to control blood sugar levels. Several classes of type 2 diabetes medications exist: Alpha-glucosidase inhibitors: slow down digestion and absorption of dietary carbohydrates. Amylin analogues: delay glucose from entering the bloodstream by slowing down gastric emptying. Biguanides: reduce how much glucose the liver releases and improve how insulin works in the body.

Dipeptidyl peptidase 4 (DDP-4) inhibitors: stimulate the pancreas to release more insulin after meals and lower the amount of stored glucose released by the liver. GLP-1 receptor antagonists: stimulate insulin production, inhibit the release of stored glucose from the liver, and slow down digestion. Incretin mimetics: mimic the effect of incretin hormones to increase insulin secretion, decrease glucagon production, and slow down digestion. Sodium-glucose cotransporter-2 (SGLT2) inhibitors: inhibit glucose reabsorption in the kidneys. Sulfonylureas/Meglitinides: stimulate the pancreas to produce and secrete more insulin. Thiazolidinediones: improve the way insulin works by allowing more glucose into muscles, fat, and liver. No single diabetes treatment will work best for everyone because diabetes is not a cookie-cutter condition. What works for one person may not work for another. Your loved one’s healthcare provider and diabetes care team will determine the medication(s) that may fit into their diabetes management and track how these medications are working to control blood sugar levels. Don’t feel discouraged if other people are using different medications than your loved one. Your loved one’s medication needs are unique. To learn more about the pros and cons of each medication, review the Resources section.

What to Say

If your loved one is having a difficult time managing their blood sugar levels, acknowledge their frustration and hard work: “I know this situation is really difficult, but I am so proud of all the hard work you are doing” or “I’m sorry you are not feeling well.” If your loved one seems to be experiencing side effects from their medication, ask, “Would you like me to call the healthcare provider for you?” If your loved one claims they don’t want to take their medication because it doesn’t work: “I’m sorry this medication doesn’t make you feel better. We can call the healthcare provider tomorrow. There are a lot of treatment options out there, and this one might not be the best one for you.”

What to Do Be aware of the possible side effects of diabetes medications. The most common is hypoglycemia or low blood sugar levels. Low blood sugar can be dangerous if left untreated. Carrying around glucagon, glucose tablets, or juice can help if your loved one’s blood sugar levels start to drop. Keep a list of your loved one’s current medications and update it when changes are made. This list will help your healthcare provider choose medications for your loved one that won’t interact with one another and increase the risk for harmful side effects. Avoid arguing with your loved one if they don’t want to take their medication. Forcing your loved one to take a medication will only make things more difficult for both of you.

What to Ask Your Healthcare Provider There are a lot of diabetes medications available. Why did you choose to start with this one?

What are the advantages and disadvantages of this medication over other medications out there? Are there any known side effects of the medication? Is there anything I should look out for? How will you know if this medication is working? When will you recommend trying different medications or combinations of medications? Have there been any recent recalls on this medication? What can I do if health insurance won’t cover a certain medication? How long will my loved one be on this medication? How much and how often should they take this medication? How often should my loved one be checking their blood sugar levels? Is an insulin pump or CGM an option for my loved one? What are the names of the companies that manufacture them? Do you have any additional information about these pumps?

Medication Support As a caregiver, you may be thinking that medication is the perfect fix to control your loved one’s diabetes. Medications are backed by science and healthcare providers prescribe them all the time. Medications have shown to significantly lower blood sugar levels and delay or limit the onset of potentially life-threatening complications. It may seem illogical to you that someone would NOT want to take their medication. For a moment, pretend the roles are reversed and you are in their shoes. Here are a few reasons someone may not like taking medications: They may have a hard time remembering to take their medication, especially if they need to take it multiple times a day.

They may worry about the potential side effects of taking a medication and feel that taking it makes them feel worse. They are having difficulty coping or are in denial about their condition and the idea that they will need to take medication for the rest of their life. They are overwhelmed with everything that goes into managing diabetes, like healthcare provider’s appointments, blood work, financials, and insurance coverage. Before you start thinking about how your loved one is being selfish or foolish for not taking their medication, think about what they may be experiencing right now. How would you feel being dependent on a medication or having a condition that can impact how you think, feel, act, and sleep? Most often, your loved one truly wants to take their medication and have their blood sugar levels controlled, but they don’t know exactly how to explain the way they’re feeling. Keep in mind that your role as caregiver is to support your loved one. It is ultimately their decision whether they will take their medication. You cannot force them to take medication they don’t want to take, and getting angry or abrasive toward your loved one is not going to be a good experience for either of you. Here are a few ways you can support your loved one in taking their medication:

Keep Things Organized For diabetes supplies that aren’t used frequently, create an organizational system with everything in one place. Get baskets and label them with what supplies are inside. When the basket is running low, you know it’s time to reorder your loved one’s supplies. For

supplies used frequently, find a safe place in the house to keep them. I keep my glucometer (medical device for measuring blood sugar) and medications on my kitchen counter and on my nightstand. I prefer these spots because I visit the kitchen first thing in the morning when I make my coffee. This placement creates an easy reminder to check my blood sugar as my coffee is brewing. I prefer my nightstand because it reminds me to check my blood sugar right before I go to bed. These examples are just two possibilities for potentially designated areas. Many areas in your home can be convenient for keeping your loved one’s supplies, and finding the perfect spot may take some trial and error. PILL COUNTERS AND REMINDERS If your loved one has a hard time remembering their medication, buy a pill counter, create alarms on their phone, or set up a consistent schedule. Pill counters are a great way to keep medications organized by the day, especially if your loved one is on multiple medications. Having alarms or a consistent schedule can make remembering to take medication easier by building taking medication into your loved one’s daily routine; an example would be taking medication when brushing their teeth. KEEP NOTE OF SIDE EFFECTS Some people are afraid to take medications because of the potential side effects associated with them. If your loved one is apprehensive about taking medications because of the side effects, discuss their fears with their healthcare provider or pharmacist. These specialists may suggest trying other medications. The process of finding the appropriate medication that makes your loved one feel better

without side effects, while also managing their blood sugar levels, may be long and frustrating. Be sure to support them and emphasize that what is happening is a normal part of the process. SEEK ADDITIONAL HELP If your loved one is having difficulty coping with their condition, it may be time to consider seeing a mental health counselor. As much as you may be supporting your loved one, they might need help from a trained professional. Mental health counselors include licensed professional counselors (LPCs), social workers, psychologists, or psychiatrists. These specialists teach coping mechanisms and identify barriers to good habit-building such as taking medications, eating healthily, or exercising. BE SUPPORTIVE IN OTHER AREAS If your loved one is overwhelmed by taking their diabetes medication, they may also be feeling overwhelmed in other areas of their diabetes management. You can offer to take some of their other responsibilities off their plate, like scheduling healthcare provider’s appointments, assisting with financials, or checking insurance coverage. Above all, continuously listen and validate your loved one’s feelings and concerns. Yes, you may have their best interests in mind, but saying things like, “Why won’t you just take your meds already?” might make your loved one feel even worse. They want to feel validated and that you understand what they’re feeling is real. Even though you do not agree with their actions, your ongoing support speaks louder than you will ever know.

What to Say If you notice that your loved one is having a difficult time staying consistent with taking their medications: “It must be difficult to rely on a medication every single day.” If your loved one is forgetful with taking their medications: “Would you be open to trying a pill counter to keep your medications organized?” or “How do you feel about getting alarms on your phone to remind you to take your medications?” If your loved one doesn’t want to consistently take their medications: “When you take your medications, you don’t complain of headaches as often” or “You are nicer to be around when you take your medications.”

What to Do Get a pill organizer. These boxes can help your loved one keep medications straight and reduce mix-ups, especially if your loved one is on multiple medications. Create reminders to take medications. These reminders can be alarms on your cell phone or sticky notes on the refrigerator. Schedule a daily routine. Having a planned routine that includes taking medications can make this task feel less daunting and like a seamless addition to the day. Educate yourself and your loved one on the importance of taking medication and finding the right medication. There is no one-size-fits-all approach to diabetes management. Your loved one needs to remain on the treatment plan that their diabetes care team prescribes to see if it is the best form of treatment for them. If they are experiencing any side effects from their medication, encourage them to share how they are feeling, including any new symptoms they may be experiencing. Side effects should be communicated to their healthcare provider, who can possibly change the dosage or type of medications.

What to Ask Your Healthcare Provider If you are having difficulty affording your loved one’s medication, discuss this situation with your healthcare provider. They may be able to prescribe a similar medication that is cheaper or covered by your insurance plan. If your loved one continues to have difficulties with medication compliance, you may want to ask for a referral to a mental health counselor. Your loved one may have a deeper issue than they are communicating, and a mental health counselor can help improve their behaviors and mindset around their condition.

How Are You Doing? Trying to find the best treatment for your loved one may take some trial and error. Arriving at the right combination of medications and dosages might require changing medications or trying different combinations of medications throughout their diagnosis. This situation will likely require both you and your loved one to be flexible and patient, especially if you’re feeling frustrated and burned out throughout the process. Diabetes treatment doesn’t just impact your loved one’s life. Being right alongside your loved one through the ups and downs of treatment can begin to take a toll on you, too. Make sure you are setting aside time to cope by talking to other family members, friends, or support groups to express your feelings and frustrations. Make sure you are pacing yourself for this race and not exhausting all your energy too early.

Key Takeaways

Diabetes treatment will look different for each individual with diabetes. Some people with diabetes may even require higher doses of a medication or even multiple medications to manage their blood sugar levels. Just because a treatment worked for one person with diabetes doesn’t mean it will be the best treatment for everyone with diabetes, including your loved one. Being open and transparent about what is and isn’t working with treatment will help the care team construct the best individualized treatment plan for your loved one. Because the healthcare provider and care team cannot be there 24/7 to see what challenges you and your loved one are facing, they will rely on your eyes and ears to pick up on what’s going on and to be transparent. Doing so will make finding the best treatment easier for everyone involved.

CHAPTER 4

Supporting Healthy Lifestyle Changes

M

ike had always been apathetic toward his own health. He knew that eating takeout everyday wasn’t healthy, but he didn’t

have the motivation or desire to make changes to his lifestyle. When his wife Tarra was diagnosed with diabetes, though, he began to overhaul the choices he made in his life in an effort to support his wife. Throughout his wife’s diagnosis and care, he learned that certain lifestyle changes would make her diabetes easier to manage, and he didn’t want her to feel alone. They started by committing to eating more home-cooked meals and limiting their beloved takeout to only weekends. At first, the transition was difficult, but they were able to hold each other accountable during the process. Over nine months, Mike lost more than 50 pounds by implementing these lifestyle changes. As unfortunate as his wife’s diagnosis was, it was the wake-up call he needed to start taking his own health more seriously.

Making Lifestyle Changes

When your loved one receives a diagnosis of diabetes, their healthcare provider and diabetes care team may recommend some lifestyle changes to help better control their blood sugar levels. These lifestyle changes can really have a significant impact on blood sugar control, and they are often general health guidelines that everyone should abide by for overall health maintenance. Like Mike, you may even benefit from implementing some of these lifestyle changes as well. Some areas the care team may focus on include quitting smoking, limiting alcohol consumption, modifying diet, managing stress, exercising consistently, and getting quality sleep. These lifestyle modifications will not only make your loved one’s blood sugar levels easier to manage but also promote healthy behaviors. As already noted, people with diabetes are at an increased risk for other health conditions, like heart disease, kidney disease, nerve damage, and vision impairments. Implementing lifestyle changes can either protect against or delay the onset of these negative health outcomes. The best way to support your loved one’s lifestyle changes is to embrace them yourself. If you put yourself in their shoes, you’d likely agree that making these lifestyle changes can be overwhelming and isolating. Implementing them in your own life will keep your loved one accountable and motivated. The improvement to your own health is an added bonus.

Eating and Nutrition Admittedly, nutrition information can be overwhelming and confusing. Weeding out sound data from misinformation is often difficult. Whereas nutrition plays a significant role in blood sugar management, your approach to what you and your loved one eat doesn’t have to come from a place of restriction. You do not need to

purge your kitchen of foods that contain carbohydrates. Instead, try focusing on what you can add into your diet to make your meals balanced for blood sugar management as well as more nutritious for overall health. Your healthcare provider will likely recommend a registered dietitian to help develop a healthy eating plan and make dietary modifications. “Balance” and “moderation” are key words to remember when eating. Some strategies your dietitian may suggest for achieving balance and moderation include managing serving and portion size and pairing foods to limit their impact on blood sugars. For example, say your loved one was craving chocolate ice cream. How much of the ice cream they eat makes a big difference on how it impacts blood sugar levels. Yes, they still can enjoy chocolate ice cream, but practicing portion control and eating a half cup rather than a pint will help control blood sugars. Another area that may be explored is pairing different foods together to offset the rise in blood sugars. For example, if your loved one eats rice alone, blood sugar levels will rise faster because the only food eaten is a carbohydrate. If the rice is paired with chicken and broccoli, though, the fiber and protein will slow the digestion of carbohydrates, making blood sugar levels slower to rise. Working with a dietitian can help you figure out individualized eating plans based on personal health goals, tastes and cultural preferences, and lifestyle. This treatment is not a one-and-done situation, but rather an ongoing interaction with the dietitian.

What to Say

“I know how much you love mac and cheese. How would you like mac and cheese with chicken and broccoli for dinner tonight?” Make their favorite food and pair it with other foods to make it more balanced. “How hungry are you?” If your loved one is really hungry, try serving extra vegetables and protein before offering extra carbohydrates. “Is there a new recipe you’d like me to make?” Make cooking fun and look up new recipes together. “What time would you like to eat dinner?” Eating dinner together is a great way to bond, and knowing when to expect the meal can help your loved one with timing their medications.

What to Do Make healthy food choices the whole family can enjoy so your loved one doesn’t feel isolated during mealtimes. Don’t nag or badger your loved one based on their food choices. No one is going to have perfect eating habits all the time. Try having consistent mealtimes so your loved one can have a designated time for checking their blood sugar and taking their medication. Avoid using the words “good” or “bad” in relation to food. Some foods are naturally higher in carbohydrates than others, but that doesn’t mean one is inferior to the other. Keep your pantry, refrigerator, and freezer stocked with nutrient-dense foods like whole grains, frozen fruits and vegetables, nuts, seeds, olive oil, and lean proteins. Pick one day a week to do an inventory of your kitchen and use the ingredients you have on hand as the base of your meals for the week. Write out a general plan for what meals you will prepare Monday to Friday.

Use cookbooks and food blogger websites to get inspiration for mealtimes. Set aside time for you and your loved one to do some recipe research and find one new recipe to try each week. Plan out your takeout days. With a meal preparation schedule, you will not feel the need to order takeout as frequently during the week.

Maintaining a Healthy Weight Maintaining a healthy weight will look different for everyone because everyone’s body is different. Various genetic and cultural traits influence bone structure, body size, body shape, and weight. Your ideal body weight or healthy weight should be tailored to your goals, but generally the weight allows you to feel strong and energetic and lets you lead a healthy life. Remember that maintaining a healthy weight isn’t the sole indicator of health. Other factors to consider may include improving lab values, feeling more energized throughout the day, exercising consistently, and sleeping better. Several studies have shown that a modest and sustained weight loss can improve blood sugar control and reduce the need for certain blood sugar–lowering medications. When trying to achieve or maintain a healthy weight, try focusing on health-promoting lifestyle and behavioral changes rather than temporary restrictive diets. When individuals pursue intentional weight loss, they often report gaining the weight back and then some within one year. Trying diet after diet can also be discouraging and mentally taxing, especially if the scale doesn’t permanently move. Prioritizing lifestyle and behavioral changes can promote longterm sustainable weight loss. Ask a healthcare provider or other qualified experts what to focus on for you and your loved one to improve overall health.

What to Say If you are concerned about your loved one’s weight, you don’t want them to feel like you are judging or attacking them because of their body size. Use the following prompts when trying to navigate the conversation with your loved one: “Are you open to talking about your weight?” “At your healthcare provider’s appointment yesterday, you weighed 215 pounds. Is this weight normal for you or has your weight changed?” “Are you comfortable and happy with your weight? Are you open to making any changes to your current weight or are you happy with where you are?” “Do you have a certain number you’d like to reach or are you just going by how you feel?” “Can you identify things in your life such as eating and exercise that could help you get to your health goals?”

What to Do Avoid making comments about your loved one’s weight in relation to their diabetes. Such comments can be triggering for your loved one. If your loved one does not want to discuss their weight, respect their decision and do not pressure them about the topic. If your loved one is at a healthcare provider’s appointment where weight seems to be the main topic of discussion and you know they’d prefer not to focus on their weight, kindly tell the healthcare provider that you and your loved one would prefer not to discuss weight unless in relation to medication dosing.

Reducing Stress

We are faced with a number of stressors every day that can significantly impact blood sugar levels. Stressors may be emotional (such as fear, anxiety, anger, or tension) and physical (such as an illness, infection, or injury). When you are under stress, your body releases stress hormones, including cortisol and adrenaline, that will cause your blood sugar levels to rise. When non-diabetics are faced with stressful situations, their pancreas will automatically begin secreting insulin to offset the rise in blood sugars. With diabetes, however, stress may cause significant and prolonged rises in blood sugar. Long-term and consistent stress can make it difficult to control your blood sugar levels and can begin to wear you down mentally and physically. When it comes to managing stress, take time to identify your loved one’s triggers—consider people, places, situations, and emotions. What may be a stressful and anxiety-provoking situation for your loved one may have little to no effect on you. Once you identify the stressful triggers, you can work together to find ways to reduce or cope with the stress. Start by listing on one side of a paper all of the stressors and, on the other side, possible actions you can do to decrease or alleviate the stress. Some examples of reducing stress for your loved one may be getting some alone time, going outside for fresh air, calling a friend or family member, exercising, taking a warm shower, journaling, meditating, eating nourishing foods, or just taking a few deep breaths. Reducing stress will look different for each person, but taking a few minutes every day to de-stress can have a significant impact on blood sugar management.

What to Say

“Is there anything I can do to help?” “I understand you are feeling overwhelmed, but let’s focus on one thing at a time.” “You can do this; you do this every day.” “If you need to talk, I will listen.”

What to Do Recognize what your loved one’s signs of stress are. Most people don’t want to admit they are stressed or struggling. If you notice changes in your loved one’s behavior, reach out and listen to them. Offer reassurance. Your loved one wants to know that what they’re feeling is valid. Listen to your loved one. Giving them a listening ear when they are stressed can be one of the best ways to support them. Help your loved one identify triggers. You may eventually catch on to their triggers before they do. Lead the conversation in a nonjudgmental manner and offer a solution.

Staying Active Staying active provides a number of health benefits, including lowered blood pressure and cholesterol, strengthened muscle and bones, reduced stress and anxiety, improved overall well-being, lowered blood sugar levels, and improved insulin sensitivity so the body utilizes insulin more efficiently. The American Heart Association recommends that all people get at least 150 minutes of moderate-intensity physical activity or 75 minutes of vigorous activity per week.

You can support your loved one by promoting everyday movement or finding movement you can enjoy together. Staying physically active doesn’t mean you have to start training for a triathlon; it can be as simple as taking a brisk walk outside after dinner, parking farther from the door when going grocery shopping, or doing yard work on the weekends. Just keeping the body up and moving can be beneficial to managing blood sugar levels. In addition to everyday movement, you can try different types of exercise to see which you and your loved one enjoy most. If you don’t like the activity you’re doing, chances are you won’t stick with it! To find one that suits you, consider online exercise classes. There is definitely something for everyone. Movement should be something you both look forward to. When trying to come up with an exercise plan, first consult with the healthcare provider to see which type of exercise may be best for your situation. Be very aware that exercise runs the risk of hypoglycemia (low blood sugar), so make sure your loved one is wearing medical alert identification indicating they have diabetes, and keep candy or glucose tablets handy while exercising.

What to Say “Do you want to go to for a hike this weekend?” “Would you want to go for a walk after dinner?” “Let’s try the new boxing gym.”

What to Do

Suggest activities to do together. A partner to work out with means having someone to be accountable to so both of you can stay consistent. Make it fun and exciting. Trying new workouts or classes can make exercising something you both look forward to. Create a routine. Scheduling your workouts and creating a routine can make sure you both are consistent with exercising. It is easy to keep pushing off exercise or making excuses when it isn’t scheduled. Be understanding if your loved one doesn’t want to exercise. It is okay if they need a break.

Smoking Cessation Smoking tobacco is known to have a number of negative health impacts, but with diabetes these impacts can be worsened. Smoking cigarettes increases insulin resistance, which can make it even more difficult to manage blood sugar levels. Diabetes is a condition that affects almost every part of the body, so it further increases the risk of developing complications associated with the lungs, kidneys, nerves, heart, liver, or even vision. If your loved one currently smokes cigarettes, it may be a good idea to discuss cutting back or quitting altogether. As their caregiver, you play a great role in their ability to quit smoking for good. You can offer them encouragement and validation that what they are doing is hard work so they can keep up the momentum to keep on going. However, it can be difficult to determine how much encouragement your loved one needs because they may feel like you are nagging or badgering them. If your loved one is having a particularly hard time quitting, or you are unsure how to support your loved one with quitting, you may want to discuss this situation with their healthcare provider and develop a plan.

Some people are able to quit smoking cold turkey and others have success gradually cutting back on the number of cigarettes they smoke each day. Still others need some extra support through behavioral therapy, group therapy, or medications to successfully stop smoking. These sources have an added benefit of offering support to smokers who want to quit, and they can reduce strain on you and your relationship. Your understanding and continued support while your loved one tries to make this lifestyle change will keep them motivated to continue trying and eventually succeed.

What to Say Offer your loved one words of encouragement and acknowledge what they are doing isn’t always easy. You might say things like: “I’m so proud of you for trying to quit. I’ll do whatever I can to make it happen.” “Quitting smoking will be hard, but I know you can do it.” “You’re not alone; I’ll be here with you.” “Did you know Rick was a smoker for 12 years before he quit? I can connect you if you’d like.”

What to Do Avoid lecturing or scolding your loved one. They know smoking is harmful to their health, but they cannot help their addiction and may not come to you when they really need help. Try doing activities that can distract them from smoking. A change of scenery or routine can help take their mind off what urges them to smoke.

Offer to go to a support group with them. They may be feeling nervous or embarrassed to go alone. Joining them at a support group may give them the confidence to finally speak up about their addiction.

Limiting Alcohol Many people use alcohol as a way to relax, socialize, or celebrate. Those with diabetes, though, should be particularly cautious when it comes to drinking alcohol because managing blood sugar levels when drinking can be more difficult. For some with diabetes, alcohol causes their blood sugars to go dangerously high; for others, blood sugar levels go dangerously low. Alcohol also causes impairments that add to the difficulties in managing blood sugar levels. Some symptoms of low blood sugar can feel the same as being drunk. The most common symptoms of both are feeling dizzy, lightheaded, confused, and sleepy. When drinking, your loved one may not be able to identify a low blood sugar episode, and neither will the people around them. If your loved one is drinking, encourage them to wear some form of medical ID that says they have diabetes or to use the buddy system, choosing someone who understands how alcohol can impact blood sugars and knows what to look for. The person with diabetes should always discuss drinking with their healthcare provider before consuming alcohol. Their doctor will determine what type and how much alcohol is safe for them to drink. Generally, women should limit alcohol to no more than one beverage a day, whereas men should limit to no more than two beverages a day. One drink is considered to be 12 ounces of beer, 5 ounces of wine, or 1½ ounces of liquor. These guidelines have nothing to do with diabetes: They are for all adults, including those

with diabetes. In some cases, it may not be safe to drink any alcohol at all. If your loved one is trying to limit their alcohol consumption, try looking up some fun mocktail recipes for everyone to enjoy. You can also come up with a list of ways to relax and celebrate that have nothing to do with alcohol.

What to Say Social events or gatherings often involve alcohol. When attending an event where alcohol is present, the person with diabetes may not feel comfortable explaining why they aren’t drinking right now. I have had the most success with keeping my responses as simple as possible. Encourage your loved one to use one of my go-to phrases when someone offers them a drink: “No thanks, I’m driving tonight.” “Sure, I’d love a diet soda or club soda with extra lime.” “I’m not drinking tonight.” “I appreciate the offer, but I don’t like the way alcohol makes me feel.”

What to Do Encourage your loved one to wear a medical ID, especially if they are drinking. My personal favorite brand is RoadID, which clips to my smart watch and is therefore attached to me at all times so I don’t forget it. If your loved one experiences a medical emergency, their medical ID will help first responders know how to treat them. Try looking up low-carb mocktails online. Sometimes you may be craving a light and refreshing drink. Instead of going for a cocktail loaded with sweeteners and syrups, try making your own mocktail at home using sparkling water, kombucha, fresh herbs, and citrus.

Celebrate special events and holidays without alcohol. As the caregiver, try to limit your drinking, too. Excessive alcohol intake can have negative health implications on everyone, not just your loved one. Not only could limiting alcohol help you improve your own health, but doing so could also prevent your loved one from feeling isolated.

Getting Adequate Sleep Lack of quality sleep can impact glucose levels. However, getting the recommended seven to nine hours of sleep with diabetes can be difficult. High or low blood sugars can interfere with getting a good night’s rest. Waking up in the middle of the night to use the bathroom or to eat a snack can be disruptive. Without a good night’s rest, the body experiences more insulin resistance the next day and blood sugar levels run higher than usual. Too little sleep stresses the body and prompts the release of stress hormones that raise blood sugar levels. A lack of adequate sleep may also increase cravings for carbohydrates or sugary foods because the body needs energy. Prioritizing sleep can significantly improve blood sugar management and provide an overall better mindset for monitoring and managing diabetes. When well rested, the person with diabetes is more alert during the day and has increased energy to prioritize blood sugar management. To get a good night’s sleep, start with setting a bedtime and creating a sleep routine. The act of winding down will alert the body that it is time to start relaxing. If you find that your loved one constantly needs to get up in the middle of the night because of high or low blood sugars, keep their bedside table full of snacks so they don’t have to leave the bedroom and search the pantry for something to eat. You may also want to discuss this

situation with their healthcare provider so both of you can get a good night’s sleep.

What to Say “It’s almost 11 o’clock. Let’s go to bed.” “How have you been sleeping lately? Have you been getting up frequently?”

What to Do You might feel helpless seeing your loved one struggle with getting quality sleep. You can try a few things to help: Stick to a bedtime schedule. Select a standard time for you both to go to sleep. Having a bedtime routine can get your body to start winding down around the same time every day. Schedule worry time together. If your loved one often has racing thoughts before bed, set aside a few minutes when you can list the concerns or worries and then come up with solutions together. Create a relaxing sleep environment. Having comfortable mattress, pillows, and sheets is important for ensuring rest throughout the night. Creating a relaxing, clutter-free environment in the bedroom can also help with rest. Try lighting candles and using essential oils as well to create a warm and inviting space. Always keep fast-acting blood sugar snacks, like juice boxes, on the bedside table. If you or your loved one doesn’t have to get up and trek to the kitchen in the wee hours of the night, you both can get back to sleep sooner.

How Are You Doing?

You may be feeling overwhelmed seeing how diabetes can impact many different areas of someone’s life. Supporting your loved one’s lifestyle changes will likely take some time for both of you to adjust to. To identify which area to focus on, list out the changes that may be easiest for your loved one to implement right away and start with ONE area. Let’s say they identify improving their sleep habits as an easy focus area to start with. Wait until they have a solid sleep routine before moving on to the next area. If you try to overhaul every area of their life all at once, both of you may become overwhelmed. You might become burned out quickly and have to go back to square one. Take things slowly and figure out what works and what doesn’t for both of you. You are in this journey together!

Key Takeaways Adopting lifestyle modifications along with your loved one can also have significant positive health impacts on your own health. Take time to reflect on your own areas of health, like eating, sleeping, managing stress, and getting consistent exercise. These lifestyle changes can be a lot to accomplish in one shot. If your loved one becomes overwhelmed with too many changes, remind them it’s okay to take things slowly and focus on one area of health at a time. Once they are able to consistently implement the changes in one area, you can move on to the next one.

CHAPTER 5

Common Daily Living Changes

J

amal and his wife Ebony finished putting their two kids to bed and decided to call it an early night for themselves, too. Ebony

was diagnosed with gestational diabetes early on in her pregnancy with their second child, but after their son’s birth, her blood sugars were still elevated. She knew her risk of developing diabetes later in life was higher because she had had gestational diabetes, but she was surprised to get the diagnosis. She had always been athletic and had continued to work out almost every day throughout her pregnancy. The hardest part of this transition had been when her blood sugars were out of range. Ebony couldn’t help but be short with her husband and kids when her blood sugars were elevated. She had been working with her care team to find the right combination of medications, so she had been experiencing some dramatic blood sugar fluctuations. Jamal was a great dad and husband and picked up on Ebony’s mood swings. He recognized patterns in her behavior and realized that when her blood sugars were out of range, friction arose.

When he saw she was sensitive, Jamal made sure to give his wife some space and time to herself. He took the kids into another room and allowed her to decompress. Ebony was thankful that her husband was understanding about her condition and didn’t make her feel guilty for needing a break.

Changes to the Body Diabetes is a condition that can impact every part of the body. It can cause body changes even in the tiny nerves and blood vessels of the eyes, skin, and mouth. With diabetes, there is a higher risk for developing eye complications or blindness. If you are noticing that your loved one is complaining of blurry vision or seeing spots (floaters), schedule an eye exam as soon as possible. Blurry vision and floaters may be a sign of diabetic retinopathy. This condition is caused by damage to the blood vessels of the retina. If left untreated, it can lead to vision loss or blindness. The higher the blood sugar, the more the eyes are affected. Be sure to schedule yearly eye exams with dilation to monitor for any changes in vision. This condition can take years to progress. Diabetes can also impact the skin, causing fungal or bacterial infection and slowing healing time for wounds on the arms and feet. Practicing good skin care like preventing and treating dry skin and treating cuts right away can prevent skin problems from getting worse. You will also want your loved one to wear comfortable shoes and clean socks, keep their nails cut short, and inspect their feet frequently for any cuts or blisters. Diabetes can also affect oral health. If your loved one’s gums become puffy or bleed easily, gingivitis may be the culprit. Brushing teeth at least twice a day, flossing once a day, and visiting the

dentist twice a year can decrease the risk of dental complications.

What to Say If you are observing potential body changes with your loved one, ask them questions without being completely direct. If you are too direct about your observations, your loved one may worry. Consider asking your loved one: “Are you have difficulties watching TV or reading? I’ve noticed you’ve been holding the newspaper closer to your face recently.” “Have you noticed any extra bleeding or tenderness when brushing your teeth? When was the last time you went to the dentist for a cleaning?” “I got a new moisturizer to use after the shower. Have you been using it?”

What to Do It can be difficult to keep track of the different healthcare provider’s appointments your loved one has to make. You can help your loved one by keeping track of their appointments and reminding them when they are due for routine exams. You can also make these appointments on their behalf to make sure they are visiting the healthcare provider on time. Some people may have difficulty examining the bottoms of their feet. You can offer to check your loved one’s feet for blisters, calluses, corns, cracked skin, cuts, dryness, ingrown toenails, redness, or other issues. If you identify any problems, clean, groom, or moisturize the site. If you find that the area is worsening, call either a podiatrist (foot healthcare provider) or dermatologist (skin healthcare provider). Encourage your loved one to wear comfortable shoes and clean socks, keep their nails cut short, and inspect their feet frequently for any cuts or blisters.

What to Ask Your Healthcare Provider During eye exams, ask the healthcare provider to do a dilation test to look for any damage to the retina and early signs of diabetic retinopathy. Consider also asking the healthcare provider to check for signs of glaucoma or cataracts. Make sure the dentist knows your loved one has diabetes. Practicing good oral care at home and making routine visits to a professional can keep their smile healthy.

Healthcare Provider’s Appointments As a caregiver, you may be comfortable communicating with your loved one and other family members about your loved one’s care but find communicating with healthcare providers and other diabetes care team members to be filled with uncertainty. Communication and organization are key to having an effective healthcare provider’s appointment. During appointments, share the behaviors and habits you are observing about your loved one. Take note of their eating, medication, sleeping, and stress management. You will be essentially acting as the eyes and ears for the healthcare providers in between appointments and providing them with vital information. Don’t forget to discuss habits and consistent behaviors of your loved one. It can sometimes be tempting to focus only on what they aren’t doing, but make it a point to recognize behaviors they are doing well. The more details you can provide to the healthcare provider, the more they will be able to understand what is actually going on and provide the best treatment for your loved one. Though your healthcare provider is a trained professional, they

cannot read minds. Take notes during the appointments as well so you and your loved one can refer to them after the appointment.

What to Say During the appointment, make sure to tell the healthcare provider what your loved one has been doing well, like exercising, taking medications, or eating more homecooked meals. “Billy has been doing a really great job taking his medications daily and exercising every day.” “We have been making an effort to eat more home-cooked meals.”

What to Do Bring a designated notebook or binder to appointments to take notes. Keep this notebook in a safe place in your home so you can refer to it outside of the appointment. When taking notes, you don’t need to write down every single word the healthcare provider says. Pay attention to key phrases or words the healthcare provider repeats. Before the end of the appointment, the healthcare provider will usually ask if there are questions. Use this opportunity to ask if you should follow up with anything at home or to clarify any points you didn’t understand. Ask to speak privately with the healthcare provider if you are concerned about something related to your loved one’s care but don’t want to bring up in front of them.

Family Communicator

When caring for someone with a condition like diabetes, you may be faced with questions, concerns, and opinions from family and friends who are often concerned about the health status of your loved one but may not feel comfortable asking them directly. These people may offer advice or suggestions about how you can improve your loved one’s care. The situation can feel overwhelming, so you will need to have effective communication and set boundaries with family and friends who may have different ideas about your loved one’s diabetes management. When a family member or friend is giving advice you know isn’t a good fit for your loved one or is something you have already tried, you may be tempted to react harshly. Instead, try to let them know that you’ve heard and appreciate where they are coming from without giving the impression you don’t need their help at all. Proactively communicate by acknowledging their willingness to help without telling them point-blank you don’t need their assistance.

What to Say Family members and friends may ask how your loved one is feeling because they don’t feel comfortable asking your loved one directly. They may badger you with questions or constantly offer advice. You can handle this situation by saying: “Thank you for the idea. We have everything under control right now, but I appreciate your perspective and will take it into consideration.” Family and friends may offer unsolicited advice because they truly care about your loved one. Telling them you will take it into consideration (even if you won’t) can make them feel helpful. “I appreciate your concern for Mary, but we are following the treatment plan prescribed by her care team. I will let you know if we need help in the future.” Letting your family and friends know you are open to asking for help in the future will show that you value their opinion and will reach out when needed.

“I would appreciate if we didn’t talk about Mary today.” With some family and friends, we need to be more direct in setting boundaries. If you don’t want to talk about your loved one’s care with them, you don’t have to.

What to Do When you get advice or suggestions that do not appeal to you, you don’t have to react and get defensive. Instead, take a few deep breaths and give yourself some time to respond and approach the situation with curiosity. When you take time to respond versus react, you are able to think more clearly about what solutions are at hand. You may be surprised to learn why your family member or friend thought their idea was one you should try. Your family members and friends will appreciate that you took the time to hear them out. Let your family members and friends know you appreciate them asking about your loved one. These well-meaning people may be asking you 20 questions about your loved one’s health because they truly love you both and care about what’s happening. If it is frustrating to answer the same questions over and over, you can tell them that you do not feel like talking about your loved one’s care at that moment and let them know everything is fine and under control.

What to Ask Family and Friends It can be difficult to set boundaries with family members and friends who want to give unsolicited advice, sometimes seemingly continuously. If you don’t want to cause a rift, consider asking them follow-up questions to see why they offered these particular suggestions. You can ask things like: What made you think this idea would be something to try? Do you know anyone else who has done what you’re suggesting? When did you first hear about what you’ve suggested?

Mood Swings Changes in blood sugar levels and the stress of living with diabetes can contribute to your loved one’s mood. As a caregiver, the more you understand about what your loved one may be feeling and how to provide support, the more you can promote a stronger and healthier relationship between the two of you. Fluctuating, spiking, or dropping blood sugar levels can cause your loved one to have feelings of anger, anxiety, or depression that are out of their control. During extreme low and high blood sugar episodes, some may experience confusion, aggression, irritability, or difficulty concentrating. During low blood sugar episodes, the brain isn’t receiving adequate glucose, or energy, to function. Mood changes often result because of a lack of energy for the brain. The brain just cannot manage the mood. On the other hand, when your loved one is experiencing a high blood sugar episode, there is too much sugar in the blood, causing the brain to act on high alert and leading to irritability. When blood sugar levels return to range, mood changes usually resolve. Of course, not all mood disturbances are because of diabetes. Your loved one may be feeling stressed, overwhelmed, or even powerless about many things, including managing their diabetes on a daily basis. The emotional and mental toll of diabetes can lead to anxiety or depression. If your loved one is experiencing frequent extreme high or low blood sugars and is showing signs of depression, they should be evaluated by a mental health professional right away. Depression can make managing diabetes difficult.

What to Say

If you notice your loved one is being more irritable or acting out of character, you may want to ask them: “Is everything okay?” Sometimes their mood swings may not be related to diabetes at all. Don’t always assume they are in a bad mood because of their blood sugars. “Are you feeling anxious or irritable?” Try getting your loved one to explain what they are experiencing. They may not be able to identify their emotions, but getting them to express and talk through what they are feeling can help. “Do you think you should check your blood sugar?” Your loved one may not know their behavior is off. Try to ask this question when you are seriously concerned about them. Using this phrase every time your loved one is upset or in a bad mood can be triggering.

What to Do Ask your loved how they are feeling or what is going on. Sometimes their shift in mood isn’t related to diabetes. Encourage your loved one to keep a regular mealtime schedule and consume wellbalanced meals throughout the day. Doing so can support their blood sugar levels and reduce mood swings associated with extreme hunger. Get moving with regular physical activity. Exercise can boost serotonin and other mood-enhancing endorphins and make it easier to manage blood sugar levels. Stay on track with medications. Taking medications according to the healthcare provider instructions can further regulate blood sugar levels and mood.

Sex and Intimacy

Diabetes can really impact every aspect of life—including what goes on in the bedroom. Sex and intimacy may become less spontaneous than before the diagnosis. Checking blood sugar prior to lovemaking could reduce interruptions caused by low blood sugars. Remind your loved one that being intimate doesn’t always mean having sex. If the loved one with diabetes is your partner, you may be tempted to always think of that person as a patient, which can cause the romance to slip away. You can still find time to be intimate in a way that isn’t focused on caregiving or diabetes. Having open communication with your loved one about other ways to be intimate can be helpful in nurturing your relationship.

What to Say You may find that your partner is not in the mood when you are because of their blood sugar levels; it is not necessarily a reflection of their attraction to you. Remind your partner and yourself that not being intimate is okay and discuss what they are in the mood for. Approach the situation with kindness and consider saying things like: “How about a massage instead or a movie?” You can still be intimate with your loved one without having sex. “Let’s plan a date night.” Getting dressed up can be conducive to a more intimate environment by making you feel good about how you look. “What are your needs and expectations?” It’s important to be open and honest about what you and your partner need. You may not always align, but understanding each other is crucial to maintaining a healthy relationship.

What to Do

Don’t take things personally. Your loved one may want to be intimate with you but their blood sugars might not be complying at this time. Let your loved one know you are attracted to them. They may feel self-conscious about their body, especially if they are wearing a medical device like an insulin pump or continuous glucose monitor. Look for patterns. If you notice your loved one’s blood sugar tends to drop in the evening, consider trying different times to be intimate. Prepare your bedside table. Being intimate can be physically draining and cause your loved one’s blood sugar to drop. Keep snacks on hand that are easy to grab and go. Find other ways to connect. Whether it is watching a movie together after work or cuddling after dinner, there are plenty of ways to spend intimate time together.

What to Ask Your Healthcare Provider For women, diabetes can cause vaginal dryness, yeast infections, and low libido. If your loved one is experiencing any of these symptoms, you may want to discuss these issues with the healthcare provider. For men, diabetes can cause erectile dysfunction and low libido. There are many medications that can help with erection. Discuss with the healthcare provider what may be best for your situation.

Traveling When your loved one has diabetes, you don’t have to stay close to home forever. Traveling does not need to stop, but it may require a bit more planning. When you are preparing to go away for a trip, make a list of all medications, supplies, snacks, and low blood sugar treatments. Take a few days to put together the list and continue to

add more items as you think of them. Having a list you can check off when you are starting to organize and pack for your trip can help decrease stress and lessen the chance of forgetting medical supplies. As a general rule, try packing double what your loved one needs for the duration of the trip. You likely won’t use all the supplies, but you never know if you will be faced with inclement weather, travel delays, or cancellations. It is always better to be safe than sorry! Always make sure that the diabetes supplies are packed along with your personal belongings. Do not put them into checked baggage because they may get lost. You will also want to have a designated medical bag so you can keep all of the supplies neatly organized. Using an insulated bag like a lunch box or collapsible cooler with an ice pack can be a good way to keep temperaturesensitive medications cool during travel.

What to Do Create a travel checklist with all the supplies your loved one uses. Reference this list as you are packing to make sure you don’t forget anything. Always pack double the supplies you normally would need. You never know if there will be travel delays or inclement weather that can force you to change your plans. Bring travel-friendly snack options like applesauce pouches, beef jerky, cheese crackers, dried fruit, fruit strips or gummies, granola bars, honey sticks or pouches, peanut butter, Smarties, Starbursts, or trail mix. Most airport security screens will not allow more than three ounces of liquid or gels. Make sure most of your loved one’s snacks are in a solid form. If you are traveling across different time zones, ask the healthcare provider if being in this different place will change the timing of your medication doses.

If your loved one is on insulin, make sure you protect the temperature of the medication. Insulin exposed to high temperatures can lose its effectiveness. Consider keeping this medication in a lunch box with an ice pack while traveling or in another temperature-controlled casing like a FRÍO pack. Always travel with diabetes supplies and snacks in your carry-on and never place these items in checked baggage to prevent them getting lost during travel.

Social Occasions Life doesn’t stop for diabetes. Weddings, parties, corporate events, and other social occasions will still take place. Food and drinks are usually at the center of most social celebrations, which can cause some uneasiness for you and your loved one because the normal routine is disrupted. Going into these events with a positive attitude instead of assuming that your loved one won’t be able to eat anything or enjoy certain foods will make the difference between having a good time and letting the event be ruined for both of you. The best way to make social gatherings diabetes-friendly and enjoyable is to treat them like any other day. If you and your loved one put the day on a pedestal, your loved one might be tempted to go overboard on food and drinks that can wreak havoc on their blood sugar levels. Remember, it is just one event! Eating a wellbalanced meal prior to a social outing will allow you and your loved one to make more controlled decisions around food. Social outings usually have a lot of unfamiliar foods, which can make it difficult to track carbohydrates. You can look up the nutritional composition of these foods on applications like CalorieKing, Fooducate, MyFitnessPal, and Lose It. As a general rule, try making half of your plate fibrous vegetables, a quarter lean protein, and another quarter carbohydrates. In an unknown food

situation, monitoring blood sugar levels more attentively can be beneficial. Your loved one may not feel inclined to check as often, but giving them a gentle reminder can allow you to enjoy your time with family members and friends.

What to Say “If you haven’t already planned a salad or vegetable platter, we will bring that.” Having a dish your loved one is familiar with or that is filled with fiber can make your loved one feel a bit more comfortable during a social outing. “Let’s look up the nutrition first.” Your loved one might want to dive right into things, but try talking to them before they jump off the ledge. Looking for the nutritional information before eating the food can prevent surprises. “What if I order this pasta dish and we share it?” Your loved one may feel overwhelmed or bummed out if they want a dish that may not be the best choice for their blood sugar management. Instead of skipping the dish altogether, split it so you both can enjoy it.

What to Do Ask the host what the food situation will be like. Knowing ahead of time what to expect can help you and your loved one feel less overwhelmed. Don’t skip meals—make sure to eat before arriving! Your loved one may want to skip a meal in order to eat more later, but treating the outing like any other occasion will help reduce the urge to overeat because you and your loved one won’t be going into the event ravenous. Offer to bring a dish your loved one enjoys. Bringing a homemade dish can be a safer option if your loved one is feeling a bit nervous about the outing. Use applications like CalorieKing or Fooducate to assist with carbohydrate counting of unfamiliar meals you may be eating or ordering.

Treat the social occasion as just an ordinary day, but if your loved one indulges a little too much, that is okay! Bring a food-storage container to the outing. If your loved one is feeling stressed out and anxious with all the food choices, bring some home with you. They may feel more comfortable eating at home than around others. Having a to-go container is also a good idea in case the host is a food pusher. They may not understand that there is a medical reason your loved one is declining their food. For some, seeing others enjoy their food is their love language and you don’t want your loved one to feel guilty for saying no. Instead, offer to take some extra food home to enjoy because it is so delicious. Make sure you are checking blood sugars a bit more intently during social outings. There can be more variability with blood sugar levels when eating out, and monitoring levels closely is the safe choice.

How Are You Doing? Diabetes is a demanding condition that can change the relationship dynamics between you and your loved one, and you may find yourself having a more significant role in supporting your loved one than ever before. Handling the physical and emotional demands of someone else’s condition can be a lot. Although you are not the one living with the condition, what you are doing is hard work. Make sure you are taking time to develop your own set of boundaries and offer yourself opportunities for self-care, including for your emotional and mental health. It is not selfish to take a break or find a moment to yourself so you can feel refreshed and centered.

Key Takeaways Diabetes can impact every part of the body. Be on the lookout for body changes in your loved one and encourage them to keep up with healthcare provider’s appointments.

You are acting like an extra set of eyes and ears for the healthcare provider in between appointments. If you have noticed any behaviors you think the healthcare provider should know about, be sure to communicate with them during appointments. Mood swings are common with blood sugar fluctuations. Your loved one may have periods of abrupt shortness or assertiveness. Although it can be difficult not to take these mood swings personally, these behaviors may be a red flag alerting you that your loved one should check their blood sugar.

CHAPTER 6

Financial Decisions and Insurance

A

few months after Simon and Ava moved in together, Ava decided it was time to review their finances and start

budgeting. Simon had gotten his diabetes diagnosis four years earlier. Ava hadn’t realized how expensive diabetes management could be. As she reviewed the monthly expenses, she asked Simon, “Are you SURE these numbers are correct?” Simon nodded and looked unfazed by the number of zeros at the end of one of the receipts. Of course, Simon’s health was their number-one priority, so Ava looked for other areas in their monthly budget to cut back. She started with their cable plan—who really needs 700 channels? She decided to call the cable company and downgrade. Next, she reviewed how many times they went for coffee and ordered takeout per month in the previous month: They had spent $12 a day on coffee and had ordered takeout most days during the week and multiple times over the weekend. They decided to have coffee at home, allow themselves one to two special takeout meals a week, and start cooking more meals at home. With these few adjustments, they would save about $600 a month to put toward Simon’s diabetes supplies.

Finances On top of being mentally and physically draining, diabetes can also drain your wallet. The financial burden associated with diabetes is tough to ignore. In the United States, people with diagnosed diabetes incur average medical expenditures of $16,752 per year, of which about $9,601 is attributed to diabetes. On average, people with diagnosed diabetes have medical expenditures approximately 2.3 times higher than what expenditures would be in the absence of diabetes. Managing diabetes includes paying costs associated with “extra” healthcare provider visits, prescription medications, medical supplies, and sometimes even hospitalizations. The out-of-pocket costs of diabetes vary patient to patient. The average cost often depends on an individual’s insurance plan, the severity of their condition (which may require multiple medications and frequent healthcare provider visits or hospitalizations), and the presence of any diabetes-related complications or other health conditions. On top of their regularly scheduled appointments with their endocrinologists, people with diabetes may require appointments with other healthcare providers or specialists, like dietitians, social workers, diabetes educators, podiatrists, ophthalmologists, and dentists, each of whom is an added cost in managing and also preventing the development of complications. Staying within your loved one’s insurance network can significantly cut the costs of healthcare provider appointments. Some insurance programs have dietitians, nurses, and other professionals built in for your loved one to see in conjunction with their healthcare provider. If they do not have health insurance or have difficulty affording their insurance copay, check if there are any free clinics nearby. Most medical schools will offer free or reduced community services.

The cost of medications can vary depending on the drug’s list price and how much your loved one’s insurance will cover. The costs of diabetes medications can range anywhere from a few dollars to thousands. The type and brand of medication needed to manage your loved one’s diabetes can have a significant impact on the annual cost of their diabetes management. If you are struggling to afford your loved one’s medication, tell the healthcare provider or diabetes care team. They may be able to prescribe a similar medication that is covered by insurance or write a prescription for a generic version. Most often, the financial cost of diabetes management is more expensive if your loved one is on insulin. Because there are few generic options of insulin, this medication can become very expensive. Consider reaching out to the insulin manufacturers—like Novo Nordisk, Sanofi-Aventis Pharmaceuticals, or Eli Lilly—to see if your loved one qualifies for their patient assistance programs or prescription savings cards for free or reduced pricing for medications and other diabetes management supplies. There are also online prescription saving websites, such as GoodRx and WellRx, that can save you money on prescriptions insurance may not cover. You can also check to see if your loved one qualifies for government-funded programs like Medicare or Medicaid. Medicare is a federally funded insurance program for individuals over the age of 65 and for younger individuals with certain disabilities or health conditions. Depending on your plan and on secondary insurance, Medicare may cover things like care in skilled nursing facilities, home healthcare, in-patient hospital stays, certain healthcare provider’s services, medical supplies, and assistance with prescription drug coverage. Medicaid is a federal- and state-funded

insurance program that provides coverage for children, pregnant women, parents, seniors, and individuals with disabilities. Medicaid benefits and coverage eligibility varies state to state. There are many costs associated with diabetes management, and they have been rising over time. Prices for diabetes medication and supplies, for example, have steadily increased over the past five years. Take time to estimate the yearly costs associated with diabetes management and give them top priority in your budget. Put money aside every month for diabetes supplies and healthcare provider visits. Although the cost of supplies, medications, and healthcare provider visits are high and potentially present a valid struggle, the health of your loved one should be a priority. Try to plan ahead as much as possible so handling the costs is a planned expense.

What to Do Write out your monthly healthcare expenses. Rather than being surprised, know your average monthly costs for diabetes care. Stay in-network whenever possible. Utilize insurance benefits by visiting with healthcare providers and care team members within the insurance network to save money. Out-of-network visits may not be covered by insurance. Open a flexible savings account (FSA) or health savings account (HSA). Funded with pre-tax dollars and set up through your employer, these accounts can be used for co-pays and medical supplies. Discuss your financial situation with the diabetes care team. They may be able to find medications covered by insurance.

Go to the name brand manufacturers’ websites—such as Novo Nordisk, SanofiAventis Pharmaceuticals, or Eli Lilly—to see if your loved one qualifies for their patient assistance programs or prescription savings cards for free or reduced pricing for medications and other diabetes management supplies. Look up medications on websites like GoodRx and WellRx. You may be able to find coupons for prescriptions that insurance may not cover.

What to Ask Your Financial Advisor Can you review our current expenses to help identify which expenses we can cut to save for medical supplies and health-related costs? How much money should we be saving for an emergency supply fund? How can we best prepare now for retirement?

Insurance When caring for your loved one with diabetes, navigating the insurance aspect of care can be stressful and tiring, and trying to understand your insurance coverage can be complex and confusing. Most insurance companies have 24/7 representatives who will answer questions about coverage. They may not be able to give exact amounts for what you’ll have to pay out of pocket for certain medications and supplies, but they will be able to tell you what and how much is covered with your plan. During the open enrollment periods for health insurance, compare different health plan offerings to see which have the coverage you are looking for. A supportive care team of diabetes educators and social workers may also be able to provide insight about insurance coverage for your particular plan to help you understand what is and isn’t covered. They may be

able to submit paperwork to your insurance company to get certain medications and supplies covered. As a caregiver, you may have to jump through hoops to get some supplies covered. Test strips, certain medications, and continuous glucose monitors or insulin pumps are commonly not covered by insurance plans, but here are some ways you can work around certain restrictions. WHEN TEST STRIPS AREN’T COVERED When the test strips you or your loved one have chosen aren’t covered by insurance, ask your insurance company if they might be covered under durable medical equipment or if a particular brand is covered. Sometimes your healthcare provider will prescribe a certain brand but your insurance company won’t cover that brand. The good news is many different test strip brands are available, so one is bound to be covered by insurance. Sometimes insurance companies may limit the number of testing supplies your loved one can use in a day. If your insurance company won’t cover enough test strips needed, discuss this situation with your healthcare provider. They may be able to write a prior authorization so the insurance company will cover the additional supplies. You may also need to prove that your loved one is using the supplies by submitting blood sugar logs. If your insurance company is giving you a difficult time covering test strips, look for other affordable meters you can obtain without going through insurance. Walmart, for example, has a meter and testing strips that are about $10 for 50 test strips. If

your loved one checks their blood sugar only one to three times a day, this option may be cheaper than trying to go through insurance. If your loved one checks their blood sugar six or more times a day, consider getting a meter like One Drop, Dario Health, or the mySugr app, where you can pay $20 to $30 for a monthly membership that which includes unlimited test strip refills. WHEN MEDICATION ISN’T COVERED When your medication of choice isn’t covered, ask your insurance which medications are covered and if there is a generic version of the current medication your loved one is on. If you can present a list of medications covered by your insurance to your healthcare provider, they are better able to choose one covered by insurance, which will save you from encountering surprises at the pharmacy. Insurance companies usually don’t understand how important it is for your loved one to get the appropriate medication. It is not uncommon for insurance companies to cover a medication for a time and then suddenly announce it will no longer be covered. In those instances, your healthcare provider may need to file a prior authorization, conduct a peer-to-peer review, or write a letter of medical necessity to prove your loved one needs these medications. Taking these actions may not be practical or possible depending on the healthcare provider’s office, but you should ask.

WHEN CONTINUOUS GLUCOSE MONITOR AND INSULIN PUMPS AREN’T COVERED It can be extremely frustrating when insurance does not cover equipment and technology designed to make diabetes management easier. If your insurance denies coverage for a CGM or pump, you will want to review the reason the coverage is being denied. After a claim is denied, your insurance company may require a letter of medical necessity from your healthcare provider that warrants the need for a CGM or insulin pump. At times, the letter of medical necessity may not be enough and you will have to go through an appeal process. Be sure you fully understand why the request has been denied so you can best advocate for the care of your loved one. The appeal process can be long and tiring, but being persistent and keeping up hope can help your loved one get the devices they need.

How Are You Doing? Dealing with the financial burden of diabetes can be overwhelming, confusing, and frustrating, to say the least. Adequate and affordable health coverage should be something everyone with diabetes has access to, but the majority of people with diabetes do not. You may have to jump through hoops just to get the coverage or care your loved one needs to manage their condition. Dealing with financial burnout or insurance appeals can take an emotional and physical toll on both you and your loved one. Connecting with other people in the diabetes community can be invaluable for both of you. You may

meet others in the same state with the same insurance coverage. Try to find a community of people who truly understand your frustrations and can offer some insight.

Key Takeaways The cost of diabetes management can be significant. Finding ways to budget for the costs of care can ensure that your loved one is never without needed supplies or medications. Insurance policies and coverage will vary state to state. Check with your local insurance broker or call your insurance company to find out what type of coverage you have. A number of companies provide patient assistance programs to offset the financial burden of diabetes care. Check with insulin, CGM, or insulin pump manufacturers about what type of patient assistance programs they offer to see if you qualify. Also check the Resources section in this book for more recommendations.

CHAPTER 7

Long-Term Caregiving Help

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armen spends all her free time taking care of her 80-year-old mother, Sofia. Over the years, Sofia’s health has significantly

declined, and she has required more and more attentive care from her daughter. Carmen works two jobs and is a single mother to two teenage boys; the care of her mother is becoming too much. She is running on a few hours of sleep every day and is mentally and physically spent. Carmen was discussing her situation with a close friend whose mother-in-law recently moved into the Sunshine Nursing Home. She said her mother-in-law is adjusting well, the staff is very attentive and caring, and there are a lot of activities during the day. Carmen decided to check out Sunshine Nursing Home on her way home from work. She had always heard nightmare stories about nursing homes, but when she got out of the car, she saw a courtyard with a koi fish pond, butterflies, and benches. She felt a sense of calm the moment she walked in, and she knew this place would be her mom’s new home. Fast-forward three months: Sofia has adjusted well to the nursing home, Carmen visits her every day between her two jobs, and they sit outside and talk about each other’s day while feeding the koi together.

Getting Additional Caregiving Help

As your loved one begins to age, they may require more assistance with their everyday tasks. Your caregiving responsibilities may become more demanding, and you may begin feeling overwhelmed or burned out trying to stay afloat. In addition to having diabetes, your loved one may be dealing with other conditions that interfere with their ability to do daily tasks like driving, bathing, managing medications, preparing meals, or grocery shopping. As the main caregiver of your loved one, you may be finding it difficult to keep up with the daily demands of your loved one’s care. You may be juggling various situations of your own, such as the demands of a job, taking care of other family members, or your own health concerns. Getting additional caregiving help doesn’t mean you are not well equipped enough to be a caregiver. You are only ONE person and may have other responsibilities to take care of other than caregiving. You should not feel guilty about not being able to be with your loved one around the clock. It’s very courageous to recognize that your loved one may be better off getting additional in-home caregiving assistance or may need to be placed in a nursing home facility. When taking responsibility for another person, you may feel a lot of pressure about whether you are making the best decisions about their personal and financial health. The decision to place your loved one in a nursing home facility can be difficult and emotional. If you are considering a nursing home for your loved one, you may be feeling burned out, exhausted, and overwhelmed with the care your loved one requires at home. You may also be feeling guilty you weren’t able to keep your loved one in the comfort of their own home or take care of them all by yourself. Guilt is an emotion that many family caregivers will experience at some point in their

caregiving journey, but you should never feel guilty about wanting the best and safest care for your loved one. Deciding whether a nursing home is the best fit for your loved one is never clear-cut or simple. There are many things that you, your loved one, and anyone else involved in their care should take into consideration before determining whether nursing home placement is the best option in terms of comfort, care, and financials.

Long-Term Care Both home care and nursing homes can be a great option for your loved one, but the cost of care can add up quickly. No matter which route you and your loved one choose, you can help them prepare financially for the transition when the time comes. And, as a caregiver, you can receive support in numerous ways that can be mutually beneficial to you and your loved one. Assisted living facilities: In assisted living facilities, your loved one will have 24-hour supervision with their daily care. Assisted living is for older adults who need some help with their activities of daily living like bathing or dressing. Assisted living facilities do not provide 24/7 medical care, but the staff will remind your loved one to take their medication. They also have different recreational services and amenities for your loved one. Assisted living facilities are often the starting point before your loved one will transition into nursing home care. Family, friends, and neighbors: Having family, friends, or neighbors who can help occasionally with caregiving can significantly lighten your load and alleviate some of the daily pressures of caregiving. Start off being transparent about what you are struggling to find time to do. Asking about specific tasks, like grocery shopping or

sitting with your loved one until you get home from work, can make it easier for those around you to either accept or offer another form of help. Most often, these people will be willing to lend a hand without asking for compensation. However, as your loved one continues to age and requires more support, using the services of trained professionals may be best. Home health aides: Home health aides receive on-the-job training from nurses or others. These professionals can provide medical and home care such as bathing, grooming, administering medications, providing skin care, and changing dressing. Home health aides will follow a specified care plan and report which tasks were completed during their shift. They can start assisting your loved one a few hours a week, and care can be increased as needed. Out-of-pocket costs may be associated with the number of hours and type of care your loved one requires. Most agencies are associated with Medicare and Medicaid, but details of coverage are state specific. Homemakers: Homemakers are workers who come into your loved one’s home to help with completing tasks such as cleaning, doing laundry, preparing meals, and other activities your loved one is no longer able to do on their own. These workers provide non-medical and no-touch services, so they will not be able to assist with bathing, dressing, grooming, or medication. The cost will depend on the number of hours and type of care your loved one needs. Homemaker costs are usually not covered by Medicare if your loved one only requires this type of care. Nursing homes: Although nursing homes sometimes get a bad rap, they provide important services for both you and your loved one. Nursing homes have 24/7 trained nursing staff to provide medical care to your loved one. As your loved one continues to age, they may

need around-the-clock medical care. In addition, nursing homes will provide meals and recreational activities for your loved one on a daily basis. Personal health aides: Personal health aides provide non-medical assistance to your loved one in their home. These workers are usually under the direction of a registered nurse or licensed nurse practitioner who creates an individualized care plan for your loved one. Personal care services usually include bathing, dressing, grooming, medication reminders, meal preparation, and laundry. Depending on your loved one’s state and the type and frequency of care needed, personal health aides are usually covered under Medicare. Trying to care for your loved one on your own can be overwhelming, but many agencies and facilities are designed to help lighten your load. If you are concerned about your loved one’s safety, make sure to bring up this point with your healthcare provider or social worker. They will be able to put you in contact with agencies in your area. Most agencies will have a representative visit your loved one and recommend the type and frequency of care your loved one may need. You may also tour assisted living or nursing homes before deciding between at-home or facility care.

What to Do Create your own caregiving circle. Ask family, friends, and neighbors if they are willing and able to help with some of your caregiving responsibilities. Creating your own network can be helpful, especially if you need someone last minute.

Make a list of things you need help with. Asking for help, especially when your loved one starts aging, can be difficult. This list can help you get perspective about the care your loved one needs. Keep your options open. When caregiving for your loved one, you want them to be as comfortable as possible. But you also want them to receive the best care possible. In some instances, they need more hands-on care than you can provide. Though they may be able to have their needs met at home, having an option in mind is helpful, as is being flexible with what is best not only for your loved one but also for you.

What to Ask a Long-term Care Provider When searching for the best care for your loved one, consider asking the following: Have you worked with someone who has diabetes? Are you trained to work with people who have diabetes? Do you know how to administer a glucagon kit (includes an injection of glucagon that triggers the liver to release stored sugar) in case of severely low blood sugar? Can you provide references from past clients and employers?

How to Pay for Long-Term Care You have probably heard all sorts of numbers from family or friends about what they are paying for their loved one’s care. The costs of long-term care can widely vary depending on location, age, health conditions, type of care needed, and frequency of care. A number of different programs can assist you and your loved one with paying for long-term care. Below is a list of common ways people get help with the cost of care, but it may be worth discussing options with a financial advisor about your own unique situation.

Government programs: Older adults are often eligible for government healthcare benefits. Several federal and state programs can provide financial assistance for nursing home placement. Eligibility requirements and benefits for these programs vary from state to state. Check with your state’s Center for Medicare and Medicaid Services office to help determine if your loved one is eligible and what services are covered. If your loved one meets the eligibility requirements, Medicaid may cover a portion or all of the costs associated with an at-home or nursing home placement. Insurance: Having long-term care insurance can significantly help you and your loved one pay bills associated with their care. This insurance can help cover the costs of both at-home care or nursing home services. There are different plans to choose from, so exact coverage may vary. Some policies will cover nursing homes only, whereas others are more comprehensive and will cover both nursing homes and at-home care. Private pay: At first, many older adults are able to pay for all or part of their care with their own personal savings, pension, or retirement funds. Most often, private pay will cover the full costs associated with home care or partial costs for nursing home care. Nursing home residents will also use a combination of insurance or government programs along with private pay to cover the costs of care. Planning for the possibility of long-term care will give you and your loved one time to learn about the various services available and start discussing which services your loved one may prefer. Mapping out the details of long-term care will also give both of you adequate time to prepare for the costs of aging by organizing personal funds or looking into government programs or insurance. Long-term care

can be expensive, but programs are available to make the transition easier for everyone involved.

Legal Matters No matter your age, getting your legal affairs in order is important. Particularly as your loved one gets closer to their golden years, though, start thinking about obtaining legal documents to protect their legal and health interests. The right legal documents can save time and money and prevent family conflict during illness or death. Although these topics are difficult to think about, having proper legal documents can make decision-making around your loved one’s care easier because you are honoring their wishes and know what they want. Below are some common legal documents to obtain: Durable power of attorney: Durable power of attorney (DPOA) will give you the legal right to handle banking, financial investments, government benefits, real estate, and other transactions on behalf of your loved one. As a DPOA, you will be allowed to make decisions on behalf of your loved one if they become mentally incapacitated. Having a DPOA can offer your loved one the peace of mind that someone will carry out their wishes if they do not have the capabilities to do so themselves. You can obtain the documentation for a DPOA by visiting a family lawyer office or, in some states, getting the forms online. Healthcare power of attorney: Becoming the healthcare power of attorney or health care proxy for your loved one is more specific than a general durable power of attorney. When you become a health care proxy, you will be able to make treatment decisions for your loved one if they become unconscious or mentally incapacitated. It is a weighted responsibility to defend your loved

one’s wishes, especially during end-of-life care. Be sure to have open discussions with your loved one about the types of treatments they would and would not like to receive in certain circumstances. As their appointed proxy, you must defend their wishes. Some of your family members may not agree with your loved one’s wishes, but it will be your responsibility to honor them despite the difficult circumstances. Living will and advance directives: A living will is a type of advance directive that may be one of the most important documents you can prepare for your loved one. It is often a collection of documents that includes instructions regarding your loved one’s personal preferences for medical and end-of-life care. This document will speak for the individual if they become incapacitated and unable to make their own treatment decisions. Having an advance directive will allow you to honor their life wishes easily because you know what they want. Living wills designate the extent to which your loved one would like to receive care that may involve the use of life support machines, resuscitation if they stop breathing or their heart stops, and the use of feeding through a tube or IV. Living wills also direct whether your loved one would like to be an organ or tissue donor. Once you have the necessary legal documentation, keep a copy for yourself and give copies to your loved one’s primary healthcare provider and lawyer as well as to a trusted family member or friend. You will want to have these documents easily obtainable should something happen to your loved one and you need to make a decision regarding their care. You should review these documents frequently to make sure you are up to date with their wishes for level and type of care.

What to Do Start planning now. Having the right legal documents can save time and money and prevent family conflict during illness or death. Discuss with a lawyer which documents you should have prepared. There may be different regulations for these legal documents based on the state your loved one lives in. A lawyer will be able to discuss the details you need to complete these documents. Once you have the necessary legal documentation, keep a copy for yourself and give copies to your loved one’s primary healthcare provider and lawyer and to a trusted family member or friend.

What to Ask Who should be the appointed power of attorney (POA)? Can we appoint more than one POA? Do the documents take effect only when my loved one becomes incapacitated? What responsibilities will I have with these documents? What kind of records should I keep? Do I need to prepare any documents prior to obtaining these documents?

How Are You Doing? Thinking about end-of-life care for your loved one can be unsettling and make you feel uneasy, but having these documents can help guide your decision-making should that time come. Imagining life without your loved one is difficult, but it is fulfilling knowing that you will be honoring their last wishes in the end. Getting these

documents prepared may be uncomfortable for both you and your loved one, and the discussion around which type of care they may want might be heavy. Being proactive now, while your loved one is still healthy, can avoid unnecessary stress and confusion.

Key Takeaways As your loved one starts to age, be sure to be proactive in their care. Start thinking about what they would like their care to look like and how much of their care you are willing and able to take on. It’s okay if you are not able to support your loved one around the clock. Programs are available to help support you and your aging loved one during these times. Nursing homes can have a bad rap, but they can be a great place for your loved one to receive care and allow you some personal freedom as well. If you are considering a nursing home for your loved one, schedule a visit with some facilities in your area to see what that transition may look like. If you need a hand, start by asking family and friends to help take care of your loved one. You may also want to start looking into government programs or other services your loved one may qualify for under their insurance benefits. Begin preparing legal documents as soon as you can. Completing these forms before something happens to your loved one is less stressful. Set aside a week or two and start collecting the information you need to get everything done at once.

PART 3

CARING FOR YOURSELF

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s important as caring for your loved one is, be sure to take care of yourself. Oftentimes, putting others’ needs before our

own is too easy. You may feel that you have everything under control, but don’t make your whole life revolve around the needs of others. Your life and health are just as important as anyone else’s and you should treat them as such. Carving out time to care for yourself is an important component of caregiving. In this section, you will learn how caregiving can affect you, how to ask for help, and what tools you can use to build up your strength and resilience.

CHAPTER 8

How Caregiving Affects You

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ancy has been married to her husband, John, for four years. John has been a person with diabetes for at least 15 years.

Nancy was not aware of the serious nature of John’s condition before they were married. The only thing she was told was that he had diabetes and was taking medication to control it. Little did she know, John had not been testing his blood sugar for years or following his healthcare provider’s orders. Nancy’s wake-up call happened on what appeared to be just another slow Sunday morning. She and John were sitting at the dining room table reading the newspaper and sipping their coffee. Nancy recalls talking to her husband one second, and the next, he was on the floor passed out. She had no idea what was happening, and with her heart pounding, she dialed 9-1-1. When John arrived at the hospital, his blood sugar was in the 800s, and they attached a lot of tubes and wires to him. Nancy was scared. She was terrified of losing her husband and hadn’t realized the impact diabetes could have on someone’s health. She always thought it was just diabetes. She knew so many other people who had it.

After speaking with the healthcare provider, John was started on insulin and told to check his blood sugar two times a day. The healthcare provider also discussed some lifestyle changes he needed to make, such as getting more exercise and eating more balanced meals. Nancy knew right then that her life was about to change. After the healthcare provider left, Nancy began thinking of all the ways she could support her husband. How could she make these changes easier for both of them?

Emotional and Physical Toll Diabetes is an emotionally, mentally, and physically draining chronic condition. When you are caring for someone with an unpredictable condition like diabetes, you never know what challenges or situations you may face. No two days living with diabetes are ever alike, and the lack of predictability can be overwhelming and draining, no matter how hard you try to get ahead. Diabetes can cause disruptions throughout the day and even well into the night. Diabetes doesn’t stop, and it may take a toll on your emotional and physical health. STRESS AND ANXIETY Diabetes is hard work, and it can be anxiety- and stress-provoking to take care of your loved one. You may find your mental space filled with thoughts about their blood sugar levels, which isn’t good for your own mental and emotional health. Try finding activities that allow you to take a mental break, such as going for a walk, meditating, talking to a friend, or reading. If you start having difficulties concentrating on things that don’t involve your loved

one’s care, consider talking to a counselor or psychologist who can provide help, direction, and coping techniques. FRUSTRATION AND ANGER A number of different emotions are involved in caring for someone with diabetes, but the most difficult feelings to navigate are frustration and anger. The triggers for frustration and anger come from different sources. As a caregiver, some situations may cause an annoyance without necessarily making you angry, whereas in other situations, you might jump right into feeling outraged. Anger and frustration are normal and healthy emotions, but if they begin to predominate, anger issues may arise, which can negatively impact quality of life and relationships with those around you. When learning how to manage frustration and anger, start with pinpointing your triggers, then try to figure out how you can make the situation more tolerable. For example, if you are attending a healthcare provider’s appointment with your loved one, it can be extremely irritating if their healthcare provider is running more than an hour behind. You may find your patience wearing thin and the urge rising to get up and yell at the nurse. Yes, your time is valuable, but the healthcare provider may have run into an emergency with another patient earlier in the day. Instead of getting worked up over something beyond your control, try not to let these feelings cloud your judgement. You will be able to better manage your anger when you are able to devise solutions for distancing yourself from what may be causing your anger. You may want to take a walk outside the waiting room or go to your car and ask the staff to call you when the healthcare provider is ready.

SADNESS AND DEPRESSION Being the caregiver for someone with diabetes can be allconsuming. You may find yourself making sacrifices in your own life to take care of your loved one or putting their needs before your own. You may have less time to spend with other family members or friends and to do things you enjoy. You may be saddened by the impact that diabetes has had on your life and mourn the carefree life you once had. Sadness and depression can affect people in different ways. Some signs and symptoms of depression include being irritated or frustrated easily, feeling hopeless, or experiencing a loss of energy or motivation. If you recognize the early signs of depression, talk to your healthcare provider when possible. Treating depression when symptoms arise will get you feeling better, faster. In addition to seeking help from your healthcare provider, consider finding ways to relax, manage stress, and take time for yourself. It can be easy to get wrapped up in the day-to-day activities of taking care of your loved one, but you won’t be able to help your loved one unless you take care of you first. GUILT As a caregiver, you may be carrying around the weight of undeserved guilt. Feeling guilty can make your caregiver role even more stressful and overwhelming than it already is. You may be feeling guilty that you aren’t doing enough to help your loved one, or because your loved one has this condition instead of you. The feeling of guilt can weigh you down and take away from what is really important: being the support person for your loved one. The best way to get over guilt is to face it head on and start asking yourself why you feel guilty.

Once you are able to identify the reasons you are feeling guilty, you will be able to better deal with the emotion. Start looking at the bigger picture and see all the everyday sacrifices you make for your loved one. Shifting your focus away from all the things you don’t do and focusing instead on all you do for your loved one and recognizing your strengths will almost definitely make you feel less guilty. Although caregiving for your loved one plays a major role in your life, you deserve to have a life outside it. Make sure you are taking time for yourself. EXHAUSTION AND PHYSICAL ISSUES Diabetes requires around-the-clock care. There are no vacation days or time off from diabetes care, making it mentally, emotionally, and physically exhausting. Caregiver burnout is extremely common and is usually caused by some combination of the pressure from the unrealistic expectations caregivers set for themselves, the physical tasks associated with caregiving, and a lack of rest. As a caregiver, you support your loved one in many areas of their life. You not only offer them emotional support, but you also assist them by taking on the brunt of the burdensome tasks they need assistance with. You may help your loved one with cleaning, preparing food, grocery shopping, keeping track of their medication, doing laundry, and reviewing their finances. You may think that losing a few hours of sleep or skipping a meal here and there isn’t a big deal, but when you begin to forgo your own needs to care for your loved one, burnout is almost always inevitable. If you find yourself starting to feel fatigued, take a moment to give yourself some self-appreciation and grace for doing selfless work day after day. Caregiving will have its fair share of trials and tribulations, but you don’t have to let the pressure bring

you down. By practicing self-appreciation, you will no longer fall victim to the unrealistic pressures you have for yourself and will learn to give yourself the recognition you deserve.

What to Do Diabetes can impact multiple areas of you and your loved one’s life. Set yourself up for success by taking care of you first. Use this checklist to help keep caregiver burnout at bay: Get at least seven to eight hours of sleep per night. Eat three balanced meals a day with snacks. Drink at least eight glasses of water. Exercise for at least 20 to 30 minutes a day. Do something for yourself to manage stress.

What to Ask Your Healthcare Provider Caregiver burnout is a serious condition that happens more often than you might think. It can be easy to forget about your own health status while caring for someone else. At your next healthcare provider’s appointment, be sure to ask: I am the primary caregiver for my husband. I have been feeling worried about his health, which has caused me to lose sleep. I have been getting only three to four hours of sleep a night. Do you have any tips for getting a better night’s rest? I have been feeling stressed out lately from taking care of my husband and haven’t been eating well or exercising lately. Can you offer any support for stress management and make sure my routine labs look okay?

Grief and Loss When you go from a life that is relatively carefree to taking care of someone who has a serious condition like diabetes, your whole outlook may change. Your biggest daily challenge goes from worrying about what to make for dinner for you and your loved one to worrying about the serious complications that may arise if their blood sugar is either too high or too low. The life adjustment can be overwhelming at times, especially when your loved one is in the early stages of their diagnosis. When you begin to think about grieving and loss, the death of a loved one is usually what comes to mind first. We don’t often consider that loss of or decline in health is something to grieve about. Diabetes is a life-changing condition, and it’s okay to grieve for the loss of the life you and your loved one once had together. Taking time to go through the grief process and accept your loved one’s diagnosis can help ease adjusting to this new life. Keep in mind that the process may not be linear; you might feel acceptance one day only to slip back into anger the next. STAGES OF GRIEF AND LOSS Everyone, including you and your loved one, may experience the stages of grief and loss differently. Some people experience all the stages of grief. Some may stay in certain stages longer than others. Some people may skip a stage of grief entirely or bounce back and forth between them until they reach the acceptance stage. There is no right or wrong way to grieve the loss of the life you and your loved one might have had, but being able to identify which stage of grief you are in may help you cope with this life-changing adjustment. Denial: Denying that your loved one was diagnosed with diabetes

can be easier than trying to wrap your head around the seriousness of the situation. When your loved one first receives a life-changing diagnosis, adjustment to the new reality may take a while. The denial stage will act as a buffer as you try to absorb the initial shock. Take some time to familiarize yourself with the condition. Doing so may help relieve the underlying fears you have about your loved one’s health. During the denial stage, you may find yourself saying things like: “But they still look healthy!” “There is no way they can be a person with diabetes!” Anger: When trying to cope with your loved one’s diagnosis, you may find yourself feeling anger or resentment about what is happening. Understandably so, the emotional discomfort of this new life may have you feeling especially frustrated and overwhelmed. When trying to make sense of what is going on, anger gives you an emotional outlet to grieve. Remind yourself during this stage that underneath the anger is sadness and pain. Try journaling, exercising, or meditating to take out your emotions in a healthy manner. You may find yourself saying things like: “Why is this situation happening to them?” “What is happening isn’t fair!” Bargaining: When trying to make sense of your loved one’s diagnosis, you may feel helpless that their health is out of your control. It is common to think about things that you have done and want to go back and behave differently. You may be making

assumptions that if you had done things differently, your loved one wouldn’t be where they are today. As upsetting as your loved one’s diagnosis may be, remember that this diagnosis didn’t happen because of you. Try reframing your thoughts into more productive and positive ones by being thankful your loved one now has a treatment plan for their diagnosis. You may find yourself saying things like: “If only I had cooked healthier foods, we wouldn’t be here.” “If I could turn back time, I would.” Depression: During the depression stage, we tend to hold our emotions inside. You may start being less sociable and begin isolating yourself from family members and friends. This stage of grief can bring sadness and loneliness as you worry about your loved one’s health. Depression can cause you to bottle up your emotions. Talking to a trusted friend, family member, or a therapist about what you are feeling can help you let out your emotions. You may say things like: “I miss the way things were before.” “What if they never get their diabetes under control?” Acceptance: The final stage in the grieving process is acceptance. When you finally come to a place of acceptance, you no longer feel resentment, sadness, or pain when thinking about your loved one’s condition. You are able to find guidance and direction in supporting your loved one. You probably came to this stage—or wanted to get here—when you bought this book. You may choose to surround

yourself with other caregivers who are going through what you are and get more involved in the diabetes community. You may find yourself saying things like: “Everything will be okay; we will figure everything out.” “I will support them so they can live a long, healthy life.”

What to Do Take time to familiarize yourself with the stages of grief. Doing so can offer valuable insight around what you’re feeling during this significant life change. Don’t ignore your feelings or bottle them up. Grieving the loss of your loved one’s health or the way life used to be is not easy. If you keep ignoring the grief or keep it from surfacing, you run the risk of combusting. For real long-term healing, you must face your grief head on. It is okay to cry and let out your emotions. Crying is a normal and healthy response to sadness. Do it as much as you need to. Go through the grieving process at your own pace. Don’t worry if you are taking too long to cope or that you are staying in a stage for “too long.” Everyone copes differently. If you need a bit more time, take it. Ask for help. If you are having a difficult time coping, ask for help from your family, your friends, or a therapist. These people will be able to offer emotional support and guidance throughout this process. Practice self-care. One of the best ways to support yourself emotionally is to also take care of yourself physically. Continue to prioritize sleep, well-balanced meals, exercise, and stress management.

What to Ask Your Therapist, Religious Leader, or Trusted Friend

If you are having a difficult time accepting your loved one’s diagnosis, consider reaching out to someone you can talk to, like a religious leader, therapist, or trusted friend. These people will be able to offer emotional and mental health support and guidance throughout the grieving process. Start off by being open and honest by explaining what emotions you are feeling and how you are coping with the lifestyle changes associated with your loved one’s diagnosis. Once they have a good understanding of how you are currently coping, start asking them questions such as: I still want to support my loved one during this time, but I am having difficulties with my own grieving process. How can I best support my loved one though we are both grieving differently? I am having difficulties adjusting to my normal routine since my loved one’s diagnosis. How can I find motivation to keep up with my responsibilities while grieving?

How Are You Doing? I want you to take a moment right now and take a deep breath and hold it for 5...4...3...2...1. Now, slowly let it out: 5...4...3...2...1. Are you feeling a bit more relaxed now? Good! This chapter has probably provoked a variety of very strong emotions. As you start to reflect on what this journey has been like for you, it is natural for your coping and grieving to come in waves of emotions. You may find yourself content one moment and bawling your eyes out in the shower the next. The emotional, mental, and physical load of caring for a person with diabetes can feel overbearing. Allowing yourself to feel these emotions is perfectly healthy. But I have found that taking a few deep, clarifying breaths can help me stay centered and relaxed when I am feeling stressed or working through something that feels overwhelming.

Deep breathing is one of the best ways to lower your stress and feel more relaxed. When you breathe in deeply, your brain receives a message to calm down and relax and sends this message to the rest of your body, too. When you find your heart beating faster and your breath getting faster and more shallow, try taking a few deep, relaxing breaths.

Key Takeaways Diabetes can impact your emotional, mental, and physical health. Set yourself up for success by taking care of you first to keep caregiver burnout at bay. The grieving process is different for everyone. Allow yourself to feel these emotions instead of bottling them up inside. If you find yourself having a difficult time coping with your loved one’s diagnosis, consider opening up to your family members, your friends, or a mental health professional. They can give you the guidance and support you need during this difficult transition time.

CHAPTER 9

Work-Life Balance

G

wen works at a corporate office where there are regular lunches. Her boss, Melinda, usually orders lunch for everyone,

often with enough food for people to take leftovers home. This week, Melinda ordered pizza and ended up with far too many pies than what was needed for their team of five. She also ordered a sheet cake for Amy, who would be celebrating her 40th birthday over the weekend. During a quick break in their meeting, Amy decided to go for another piece of cake. She said, “Wow, this cake is SO SWEET—I think I’m going to get diabetes!” The room went silent. Everyone turned to look at Gwen. Gwen just smiled wryly, but her blood was boiling. Gwen had tried to open up to her co-workers about her boyfriend’s condition. He had been living with type 1 diabetes for 20 years. She had tried to educate them that diabetes doesn’t come from eating too much sugar, but at this point, having to explain was just exhausting. She found herself biting her tongue when her co-workers made jokes about diabetes. They had no idea what it was like to live with someone with this condition.

Gwen took a few deep breaths and decided to excuse herself for a few minutes to collect her thoughts.

Balancing Work and Caregiving Being a caregiver for your loved one while also having a job can leave you feeling stretched thin. It can be difficult to balance all the responsibilities as primary caregiver and as employee. You may be managing your loved one’s various healthcare provider’s appointments, ensuring they take their medications, reviewing their financials and insurance coverage, and making sure they are eating and exercising appropriately, all while trying to get your work done at your job. Doing both can be a major undertaking, but there are ways to strategize so you can care for your loved one without faltering in your career. KEEP THEM SEPARATE Keeping your caregiving responsibilities at home and your work responsibilities at work can be difficult. Start by scheduling your loved one’s healthcare provider’s visits before, after, or even during your lunch break. You should save any research until after work hours and try not to answer phone calls unless a true medical emergency arises. Setting boundaries allows you to give your job your utmost attention when you are there. Without boundaries, you may find yourself thinking about your loved one and growing distracted, then having difficulty completing tasks or finishing them in a timely way. Keeping your responsibilities separate allows you to be fully present and attentive both at home and at work. GET ORGANIZED

More than likely, you have a lot of things you need to keep track of in your job, personal life, and caregiving responsibilities. Try to get yourself organized by creating a color-coded calendar distinguishing work, personal, and caregiving tasks. You may also want to create a daily or weekly to-do list to keep everything neatly organized. It can be overwhelming to try to keep track of everything inside your head, and you are bound to forget something. Listing appointments and tasks instead can help you avoid missing or forgetting them. HAVE A BACKUP PLAN It’s always better to be overprepared than underprepared. Some unforeseen circumstances may require you to stay longer at work, like an important deadline, a last-minute meeting, or even car troubles. Regardless of the reason, have a backup plan in case you can’t make it home in time to care for your loved one. Get to know your loved one’s neighbors and friends and see if they are willing and able to cover you in a pinch. Reach out, too, to other local family members to see if they will be able to check in on your loved one when you are running behind schedule. Having a backup plan can give you the peace of mind knowing your loved one is safe and well. DISCUSS CAREGIVING WITH YOUR JOB MANAGER Be open and honest with your job about your caregiving responsibilities. As a primary caregiver, your loved one’s health is a significant part of your life, and your management team should be aware of it. If you make it known that you have commitments to keeping your loved one alive and well while trying to complete your professional duties, your management team may think twice before giving you another project, and they may be more flexible if you

need to attend healthcare provider’s appointments with your loved one. Your job may also have resources, such as caregiving services, available through the human resources department.

What to Do Keep your work responsibilities at work and your caregiving responsibilities at home. Separating these responsibilities will allow you to give your full, undivided attention to each role. Set up an organizational system that will help you keep all your work and caregiving responsibilities in check. Having a mental checklist can cause you to forget important deadlines or appointments. Create a calendar or checklist to help you keep track of all your responsibilities. Things won’t always go according to plan, so have a backup plan. Connect with your loved one’s family members, friends, and neighbors to see who is willing to help out if you need last-minute assistance. Be open and honest with your job about your caregiving responsibilities. There may be resources to help ease your workload.

What to Ask Your Manager Can any of my job responsibilities be completed remotely? Is it possible to work one or two days from home? Is there any flexibility with my working hours so I can attend healthcare provider appointments with my loved one? Are there any resources for taking a leave of absence? (You may not need a leave now, but having this information can be helpful in the future.)

Asking for Help

Recognizing that you are unable to provide the quality care your loved one needs doesn’t mean you are weak or a failure. Taking care of someone is a big responsibility for anyone. Asking for help may allow you to take better care of your loved one than if you were to continue to do it all on your own. Wanting to do everything ourselves is natural, but sometimes life happens, and we simply can’t do it all. Asking for help can be quite uncomfortable if you’re not used to doing so. Knowing how and when to ask for the help you need is important and will allow you to concentrate on other areas of your life without worrying about your loved one. Here are some tips to help you find the support you need: DON’T GUILT-TRIP When asking for help, keep in mind that no one ever wants to feel guilty for not being able to help. You know you are putting in more time and effort than any of your family and friends to take care of your loved one, but you do not need to shame them in order to get help. Doing so may cause them to become defensive and unwilling to offer assistance. For the most part, people do enjoy lending a helping hand, and they will respond well to feeling appreciated. When you are asking for help, be sure to express gratitude. Instead of saying, “I take care of Mary every single Saturday. Can’t you just help out for once?” try, “I have another commitment this Saturday and I would really appreciate your help if you can watch Mary for me.” BE FLEXIBLE

When you are asking for others to help with caregiving, understand what they are comfortable doing. If your loved one requires assistance with insulin injections, is the helper comfortable performing this task at mealtimes? If they aren’t comfortable giving injections but are still willing to help out around the house, maybe you can change the time of your outing to fall between mealtimes. This way you can still do what you have to do and make it back in time to give them their injection. Just because someone is uncomfortable giving injections doesn’t mean you have to cancel your plans or that they aren’t willing to assist in other ways. ASK FOR SPECIFIC ASSISTANCE When asking for assistance, make sure you are as specific as possible about what you need. You are caregiving every single day, and chances are whoever is helping will not have a full understanding of what you do. You also want the person helping to feel as comfortable as possible when they are with your loved one. Knowing their limitations is important. Breaking down your loved one’s daily routine can help you understand which areas they are comfortable helping with so you know who to call when you need a certain type of assistance.

What to Do Don’t guilt-trip your family and friends when asking for help. Most people generally want to feel helpful and needed, but they may be insulted if you imply they aren’t doing enough. As a primary caregiver, maintain flexibility when others are taking care of your loved one. Not everyone will feel comfortable providing the same level of care you do.

When asking for help, be as specific as possible in describing the type of assistance you are looking for. Keep a mental note of who is comfortable doing what so you know who is best equipped to help take care of your loved one, if needed.

What to Ask Your Family and Friends “I have another commitment this Saturday. Can you stop by for a few hours and sit with Mary? I would really appreciate the help.” “My mom needs to take insulin injections at mealtimes. Would you be comfortable giving her medication if I taught you how?” “Do you have any questions about what my mom’s schedule looks like during the day?”

Available Outside Services Chances are you probably have already used outside services at some point in your life. Think about the times you have taken your car to a mechanic or had a plumber fix a leaky pipe. Sometimes you need to rely on other people to do the job because you don’t have the skills the other person does, or you simply don’t have the time. You may feel like there aren’t enough hours in a day to do everything, but it can be hard to accept that you need a little help. Using outside services can give you some relief and peace of mind that tasks are being accomplished. While you are working, someone else can be doing the laundry, grocery shopping, mowing the lawn, or picking up the kids from school. Outsourcing allows you to be more efficient within the 24 hours we get each day.

When considering outsourcing certain services, consider which tasks you dislike. Do you find yourself always putting off mowing the lawn? Or how about that load of laundry that has been in the dryer for two weeks. Finding someone to help with these tasks usually just involves asking others or doing a search online. If you are stretched too thin financially, consider bartering. If you have children, ask them to mow the lawn in exchange for an extra hour of TV time. You can also make these sorts of arrangements with family members, friends, or neighbors, like setting up a carpool for swim practice. Look for opportunities that will save you time each week, which can really add up. If you need some general help around the house, like changing light bulbs, hanging up a mirror, or even moving furniture, consider asking around on community forum pages. You would be surprised how many people are willing to lend a helping hand or do these things at a low cost. You may also have some luck asking friends and neighbors who they have hired to help with certain tasks.

What to Do Make a list of current tasks you often don’t have time to do or dislike doing. Consider what type of person can do these tasks. Can your kids help out? Or do you need a professional? Join community forum pages online and post about services you are looking for. Be open with your colleagues, family, friends, and neighbors about projects you need help with. They may volunteer themselves or know someone else who can help.

What to Ask Prospective Service Providers Do you charge by the hour or per project? Is there a cancellation or refund policy? What happens if I am not satisfied with the job? Do you offer a discount if I book a package versus one-off sessions? Do you have any samples of your work? Do you have any references from past employers?

How Are You Doing? When you are trying to handle work, caregiving, and your personal life, you may feel overwhelmed and stretched thin. As much as you wish you were like Superman or Superwoman, you can’t do it all, and you shouldn’t have to do all the caregiving alone. Writing down your thoughts helps get them out of your head and can give you a better perspective on what is going on. I often ask my clients to split a sheet of paper into two parts. On one side, write down things causing you stress or anxiety. On the other side, write down what you can do to potentially lessen the stress or anxiety. An example of something that may be causing your stress or anxiety could be leaving your loved one alone while you go to work. You may find yourself having difficulty concentrating on tasks at work you normally would have no problem completing. As a result, doing these tasks now takes much longer than in the past. A possible solution could be asking a neighbor to check on your loved one during lunch or hiring a home service during work hours.

This writing activity can help you solve some of your biggest daily stressors. While writing, focus on what you can change rather than what you cannot. Stressing over that which you have no control over will only add to your stress and frustration.

Key Takeaways Balancing work, caregiving, and your personal life can leave you stretched thin. Setting boundaries between work and caregiving can help you prioritize your workload and ultimately be more efficient in each role. It is okay to ask for help and doing so is not a sign of weakness. You are still an excellent caregiver, even if you need some assistance with getting things done and making sure your loved one is safe and healthy. A number of different resources can lead you to someone who can help, or ask family, friends, and community members for assistance with everyday tasks you just don’t have time for.

CHAPTER 10

Staying Healthy and Resilient

K

im and her husband Peter were always active people. On the weekends, you could find them at the nearest hiking trail easily

trekking 10 miles. When Kim was diagnosed with diabetes, though, she felt as though she was never going to hike again. Diabetes didn’t allow them to be as spontaneous with their weekend adventures anymore. Everything needed to be packed and accounted for because they never knew what could happen. Peter was supportive in doing whatever his wife was comfortable with, but he started to feel a ping in his gut whenever Saturday rolled around and Kim said, “Go ahead without me. I will just stay home.” He wanted his wife to join in on the activities they enjoyed. Peter decided to do some research and came across a blog written by a fellow type 1 person that listed tips for hiking with diabetes. Peter printed out the blog and started purchasing all the supplies. He bought a mini cooler pack to keep Kim’s insulin chilled as well as some extra snacks. He collected additional diabetes supplies, and before he knew it, he had put together a medical bag ready for hiking.

When the following Saturday rolled around and Kim tried to say no, Peter pulled out the backpack and showed Kim all the supplies she would need to hike. Kim’s eyes welled up with tears—happy tears. Peter was excited to bring his wife along for their next adventure together.

Get Moving The first step in making sure you maintain your physical and mental health is by staying active. Getting your body moving for at least 20 to 25 minutes a day or 150 minutes a week can significantly improve your caretaking abilities. Exercise can help boost your energy levels, increase your muscle strength and endurance, improve your mood, and make it easier to manage stress. There are a number of different ways to exercise, and each has its own unique health benefits to make you physically and mentally stronger while taking care of your loved one. Exercise is typically broken into four main categories: aerobic exercise, balance exercise, strength training, and stretching. AEROBIC EXERCISE This type of exercise will speed up your heart rate and breathing, helping increase your endurance. Having adequate endurance is important as a caregiver because you won’t find yourself feeling winded after assisting your loved one. If you are feeling out of breath after grocery shopping, start incorporating more aerobic exercises like cycling, dancing, swimming, or walking to increase your endurance.

BALANCE EXERCISE Improving your balance can make your joints more stable and reduce your risk of injury from falls. Balance exercise is particularly important as you start aging because adequate balance can help prevent fractures and increase reaction time. If you fall and get injured, you may not be able to properly care for your loved one. When trying to come up with an exercise regimen to follow, consider which types of activities you actually enjoy doing. The more you like the exercise or movement, the more likely you are to stick with it. If you haven’t exercised in a while, consider starting small and gradually upping your strength and endurance exercises. If you are new to exercise, choose low-impact activities, such as body weight exercises, swimming, walking, or yoga, as a starting point. If you jump straight into trying to run a marathon on your first day of exercising, you may end up feeling discouraged and also very, very sore the next day. Always remember to check with your healthcare provider before starting an exercise regimen. STRENGTH TRAINING Strength training, as the name suggests, helps you maintain your strength and muscle mass. Regular strength training, two to three times a week using body weight or free weights, can help with everyday caregiving tasks like carrying groceries or helping your loved one stand up, making your caregiving role easier. STRETCHING

Stretching helps you increase and maintain flexibility, which can be particularly helpful with caregiving. If you are assisting your loved one with their daily activities, stretching can help you perform such tasks as bending over to tie your loved one’s shoes. Stretching is also a great way to help maintain your posture and improve your energy levels.

What to Do Try different exercise classes until you find a type of movement you enjoy. When you like your workouts, exercising may seem less like a chore. Consider starting off with low-impact exercises like body weight exercises, walking, or yoga. Don’t have an all-or-nothing mentality. Remember, the BEST exercise is the one that you are consistent with. You don’t have to do crazy, intense workouts to get the benefits of exercise. Try incorporating exercise into your daily routine. Start and end each day with a 10-minute walk around the neighborhood.

What to Ask Your Healthcare Provider I haven’t been physically active in years. Is it safe for me to exercise? Which type of exercise is best for me? Are there any types of exercise I should avoid?

Eat Right

Food is not only fuel, but a form of self-care. Prioritizing your eating habits can help you feel energized enough to take care of your loved one. If you’re not eating enough or are eating overly processed foods, you may find yourself hitting a slump at 3 p.m. or constantly feeling bogged down. When you treat your dietary habits as a form of self-care, it’s easier to prioritize eating more nutritious meals. Stay focused on choosing foods that will provide your body with the nutrients it needs to be healthy. When you first begin evaluating your diet, take a bird’s-eye view. The idea of zooming out and seeing the big picture can help you identify where you need to focus. Are there meals where you can add in more nutrient-dense foods? Are you frequently skipping meals? Are you feeling uninspired with your cooking? When you start to take a look at your overall dietary habits, you can identify behaviors and patterns that can be improved. Think about which foods you can add in rather than just what you need to take away. When it comes to eating healthy, shifting the focus to adding in more nutritious foods can make eating healthy feel less restrictive. Fruits, green leafy vegetables, healthy fats, lean protein, and whole grains can make your meals more nutritious and make you feel more energized after eating. Also, how frequently are you skipping meals? Our bodies need fuel every three to four hours, and if you are skipping meals, you are not giving your body the appropriate fuel. When taking your bird’seye view of your dietary habits, check if you’re skipping a balanced breakfast and opting for coffee instead, or if you’re skipping lunch because you are too busy to take a break. If you are skipping meals, investigate the reasoning behind what you’re doing and think of

ways to prioritize that meal. Perhaps you could prep breakfasts and lunches for a week so you have a grab-and-go option. If adding in more nutritious foods seems intimidating, I hear you. Use it as an opportunity to also explore new foods as well as new cooking techniques. If you’ve never cared for vegetables, try out new recipes and different kinds of vegetables and notice how they make you feel. Doing so can be a great way to prioritize your health. Eating healthy doesn’t need to be all or nothing. Focusing on one thing at a time can help you build long-term dietary habits so you can feel energized when taking care of your loved one.

What to Do Keep a food journal for a few days and see what foods you eat. This journal can help you visualize which foods you eat frequently and let you see if you are skipping meals. Focus on adding in more fruits, green leafy vegetables, healthy fats, lean proteins, and whole grains to make your meals more nutritious. If you find yourself constantly skipping meals, try preparing a few meals ahead of time. Get excited about cooking! Look at cookbooks or food blogger websites to find tasty recipes. Remind yourself how eating nutrient-dense foods makes you feel. Say no to foods that don’t make you feel energized. If making dietary changes seems completely overwhelming, consider meeting with a registered dietitian. They can support you in making dietary changes.

What to Ask Your Healthcare Provider

I have made some changes to my diet and lifestyle. When was the last time I had labs taken? Is it possible to get a laboratory panel done? I would like to see if there is any improvement. I am struggling with making some dietary changes. Do you have any recommendations on where to start? Do you know of any local dietitians?

Stay Connected Caring for someone with diabetes often means constant decisionmaking and stress. Not having anyone to talk to who really understands what you are going through can feel isolating. You may find it difficult to open up to family and friends about your loved one’s condition because diabetes, unfortunately, has a stigma associated with it. Advocate not only for your loved one but for yourself, too, by opening up the conversation with your family and friends about what diabetes actually is and is not. When I was first diagnosed with diabetes, family and friends made statements like “Did you eat too much sugar?” or “You don’t look diabetic,” as though eating something would’ve caused diabetes and, better yet, that people with diabetes look a certain way. I used to think these comments were ignorant, and they made my blood boil, but now I use them as a teaching experience. It is beyond unfortunate that society has influenced what others think about people with diabetes. Some believe people can get diabetes by eating too much sugar, not exercising enough, not taking care of themselves, or being overweight. As you learned in chapter 1, a number of factors can contribute to a diagnosis of diabetes, and most are out of our control.

When you take time to educate your family and friends about your loved one’s condition, they will gain a better understanding of diabetes and you will have a deeper connection with one another. This opening will allow you to talk honestly about how your loved one’s diabetes management is going, and you won’t experience feelings of guilt or shame about talking about diabetes in front of them or try to avoid social gatherings for fear that someone will bring up diabetes. When you take time to educate your family and friends, both you and your loved one can feel supported by them.

What to Do When you tell your family and friends about your loved one’s diagnosis, you may not know the answer to all of their questions. Use the Resources section in this book to refer them to helpful websites to learn more about diabetes. Despite your efforts to educate your family and friends, some may still ask questions about your loved one, such as, “Should they really be eating THAT?” In this instance, it would be appropriate to privately discuss the matter and state that these types of comments are hurtful to your loved one, even if they are said with the best intentions. For family members and friends who want to help support you and your loved one, be as specific as possible in describing what you need. If you can’t think of anything they can help with, say, “Thank you so much for offering to help. I can’t think of anything right now, but when I do, I will definitely call you.”

What to Ask Your Family and Friends If your family members and friends are continuously making potentially harmful comments about your loved one’s condition, ask if they are open to having a conversation to learn more about diabetes.

Your family and friends care about you and your loved one and they may frequently ask questions about their condition. If you don’t feel like discussing their condition at that moment, you can say something such as, “I appreciate you asking about them, but I would prefer if we could talk about something else.” Staying connected with family and friends is a two-way street. However, your family and friends should understand that you have a lot of other responsibilities and may not be able to pick up the phone to call them. To help stay connected, tell them, “I am usually free Monday night after 7 p.m. If you’d like to chat, this time is the best to reach me.”

Support Groups Remember that you aren’t the only caregiver for a person with diabetes. Many people are doing the same work every single day. A support group will connect you with others with similar thoughts and feelings who have faced the same daily challenges. A group can help you feel less alone in your caregiving journey and provide the opportunity to talk openly about your feelings without being judged. Building a community of people who really know and understand what you are going through is important. Being able to connect with someone who can say “I know exactly what you’re going through” or “When I was going through this, I found X, Y, and Z to be helpful,” can make you feel less isolated and can provide a space to learn new caregiving techniques from others. Support groups are either in person or online. If you are looking for an in-person group, consider reaching out to a social worker or your local hospital to see if either hosts support groups for caregivers. The Resources section in this book can also help you locate nonprofit organizations near you that host support groups for caregivers. In-person support groups can be beneficial because they allow you to build relationships with other caregivers nearby. Online

resources are also beneficial and can expand your support community beyond those local to you. Social media venues—like Facebook, Instagram, and Twitter—can help you find other caregivers from around the world. I have connected with other type 1 persons with diabetes throughout the United States, Australia, Canada, and Europe. One of the best things about support groups is that they are available around the clock. Unlike your healthcare provider or therapist, your support group community is there any time you need them, and you don’t have to request an appointment. Although support groups have many positives, remember that what has worked for one person may not work for you. Always remember to keep the healthcare provider and care team in the loop and use support groups as an additional component of the team, rather than a replacement.

What to Do Ask your diabetes educator or social worker for recommendations for any local support groups or nonprofit chapters. If you don’t already have a social media account, consider creating one. Almost every social media platform has an online diabetes caregiver community. Try out different platforms and see which you like best. Consider asking family and friends which platforms they are on and start from there. Consider searching for relevant hashtags to filter the content for your preferences. If you want to connect with other caregivers within the diabetes community, try searching for hashtags like #diabetescaregiver, #diabetescommunity, #gestationaldiabetes, #type1diabetes, and #type2diabetes.

What to Ask Your Support Group Attending a support group for the first time can be quite intimidating. You are in a room full of people you don’t know. But remember you all have something in common—you are all taking care of someone with diabetes. When attending your support groups, be as open and honest about your experiences, and consider the following prompts to get your started: Have you ever experienced waiting more than an hour for an endocrinology appointment? Does anyone have any advice for keeping all my loved one’s prescriptions organized? How often do you attend endocrinology appointments with your loved one? Do you do anything to prepare for healthcare provider appointments? What has your loved one’s experience been like when they were on this particular medication? What do you do to support your loved one when their blood sugar is high or low? Is there anything you wish someone had told you when your loved one was first diagnosed? What type of advice would you give someone whose loved one was just diagnosed?

Be Kind to Yourself When you are caring for someone with a chronic condition like diabetes, you are faced with a new challenge every single day. No matter how hard you and your loved one may try, blood sugar levels will continue to fluctuate, even if your loved one eats the same foods, exercises the same way, and takes the same medications. When caregiving for someone with diabetes, you are in this journey

for the long haul. You are doing a selfless act of kindness every single day just by taking the pledge to support your loved one in their journey. You have probably realized that diabetes doesn’t impact only your loved one, but also everyone else involved. Things may not always be perfect, but when you accept that diabetes is an imperfect condition, you are no longer striving for perfection. You give yourself a buffer when it comes to taking care of your loved one. Life with diabetes don’t always go according to plan. But when you are able to lead with kindness rather than self-judgement, you will find yourself learning from these experiences rather than wallowing in self-resentment. Every day with diabetes is a learning experience. You may want to be angry at yourself for not knowing how to do certain things. But what you really need to do in these moments is show yourself kindness and stop blaming yourself. When you are able to be kind and forgiving with yourself, you will be able to learn from this experience and do better next time. You may find yourself obsessing over the negative things that are going on without giving yourself the recognition you deserve for everything that is going right. Caregiving is hard work. When you do something you are proud of, take a minute to celebrate it. Give yourself a pat on the back for doing a good job. Being your own cheerleader and giving yourself recognition will enforce that you are a good caregiver, even when you might not feel that way. Celebrating the tiniest of victories can keep you motivated.

What to Do

Remind yourself you are doing a selfless act by caring for your loved one every single day. You are only human and mistakes are bound to happen. Give yourself forgiveness and kindness. Don’t be so hard on yourself, and use mistakes as a learning opportunity for next time. If you find yourself constantly focusing on your mistakes or what you don’t do, reframe your thoughts by taking a moment to list what you do well. Make a list of positive affirmations to read to yourself when you are having a rough day. Start off each day with a gratitude journal. Write down at least three things you are grateful for. Doing so can help you focus on the good things in your life rather than the bad.

What to Ask Yourself The emotions you feel with caregiving can come in waves. You may find some days easier than others. When your caregiving is feeling particularly onerous, ask yourself these questions: Why did I decide to become a caregiver? What motivates me to be the best version of myself? What are five things I am thankful for? What makes me happy? How can I incorporate more of these things into my daily life? What makes my life feel fulfilled?

How Are You Doing?

Caregiving and managing work and your personal life can be challenging as well as mentally and physically exhausting. Take time for yourself, even just a few minutes a day or on a designated day of the week, and do something just for you. Many caregivers can get wrapped up in doing so much for others that they push their own needs to the bottom of their list of priorities. Make your health a priority so you can be the best caregiver you can be and live a long, healthy life. Continuing to put your own needs on the back burner is likely to leave you feeling mentally and physically burned out, which can have adverse effects on your health. If you are used to prioritizing others, trying to overhaul your current lifestyle can be overwhelming. Trying to do too much at once, however, is not sustainable. Instead, pick one area to improve upon and focus on it for a few weeks. Have you been staying up watching TV until 2 a.m.? Can you start prioritizing going to bed at 11 p.m. and getting at least seven to eight hours of sleep? Once you master that, move on to the next area and then the next. You will feel a difference in your mood and energy when you start prioritizing your needs.

Key Takeaways Your mental, physical, and emotional health is important and should be a priority. Start by prioritizing sleep and eating to help keep your energy levels up. Without adequate sleep, you may be exhausted and unable to perform your caregiving tasks. Likewise, if you aren’t fueling your body appropriately with enough nutritious foods, you may find your energy lacking. Staying connected with family and friends can help keep you

grounded when things are rough. Be open and honest when they ask how things are going. They want to support you, too. Finding your own community of like-minded people is an invaluable component of your caregiving journey. Connecting with others who know what you are going through and understand what you are feeling can be refreshing.

Resources General Caregiving AARP: AARP.org/caregiving Eldercare Locator: Eldercare.ACL.gov/Public/index.aspx Family Caregiver Alliance: Caregiving.org

Government Resources Medicaid: Medicaid.gov Medicare: Medicare.gov VA (U.S. Department of Veterans Affairs): VA.gov WIC (Women, Infants, and Children): FNS.USDA.gov/wic

Medication Savings CoverMyMeds: CoverMyMeds.com/main GoodRx: GoodRx.com/discount-card InsulinHelp: InsulinHelp.org Lilly Cares: LillyCares.com NovoCare: NovoCare.com/content/novocare/en/home.html RxAssist: RxAssist.org Sanofi Patient Connection: SanofiPatientConnection.com

Nonprofit Organizations/Community Help

American Diabetes Association (ADA): Provides education about diabetes. Diabetes.org Beyond Type 1: Focuses on type 1 diabetes. BeyondType1.org Beyond Type 2: Focuses on type 2 diabetes. BeyondType2.org DiabetesMine from Healthline: Information and encouragement for people with diabetes. Healthline.com/diabetesmine Diabetes Online Community (DOC): Online community for connecting with others who are living with diabetes. BeyondType1.org/the-diabetes-online-community-doc/ DMP (Diabetes Management Platform): Free app to connect with other people with diabetes and also with professionals. TheDiabetesApp.com JDRF: Local chapters and community-led support groups. JDRF.org Taking Control of Your Diabetes (TCOYD): Offers conferences, programs, and events for people with diabetes. TCOYD.org The diaTribe Foundation: Helps individuals and caregivers understand diabetes by providing useful, actionable information. diaTribe.org/foundation

Professional Associations/Organizations Academy of Nutrition and Dietetics: EatRight.org American Mental Health Counselors Associations: AMHCA.org/home Association of Diabetes Care & Education Specialist: DiabetesEducator.org/home National Association of Social Workers: SocialWorkers.org

Supply Savings Dario Health: DarioHealth.com One Drop: OneDrop.today

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Acknowledgments I want to thank those who have been by my side since my diabetes diagnosis in 2012. The support I have received from my mom Michelle, my dad Richard, my sister Chelsea, and my boyfriend Mike has been invaluable and a true inspiration to this book. Thank you for joining me at countless appointments, braving my mood swings, fetching me juice boxes at 3 a.m., and, above all, believing in me. This book would not have been possible without your love and support.

About the Author

Amanda Ciprich, MS, RD, is the owner of Wholesome Nutrition LLC, a virtual practice that specializes in type 1 diabetes management. With a bachelor’s degree in nutritional science from Rutgers University, she went on to become a registered dietitian and later received her master’s degree in clinical dietetics from the University of Rhode Island. She works with individuals and families living with diabetes to help them prioritize self-care.