Aliceheimer’s: Alzheimer’s Through the Looking Glass 9780271088808

Citation preview

Aliceheimer’s

Susan Merrill Squier and Ian Williams, General Editors Editorial Collective MK Czerwiec (Northwestern University) Michael J. Green (Penn State University College of Medicine) Kimberly R. Myers (Penn State University College of Medicine) Scott T. Smith (Penn State University)

Books in the Graphic Medicine series are inspired by a growing awareness of the value of comics as an important resource for communicating about a range of issues broadly termed “medical.” For medical practitioners, patients, families, and caregivers dealing with illness and disability, graphic narrative enlightens complicated or difficult experience. For scholars in literary, cultural, and comics studies, the genre articulates a complex and powerful analysis of illness, medicine, and disability and a rethinking of the boundaries of “health.” The series includes original comics from artists and non-artists alike, such as selfreflective “graphic pathographies” or comics used in medical training and education, as well as monographic studies and edited collections from scholars, practitioners, and medical educators.

Other titles in the series: MK Czerwiec, Ian Williams, Susan Merrill Squier, Michael J. Green, Kimberly R. Myers, and Scott T. Smith, Graphic Medicine Manifesto Ian Williams, The Bad Doctor: The Troubled Life and Times of Dr. Iwan James Peter Dunlap-Shohl, My Degeneration: A Journey Through Parkinson’s Aneurin Wright, Things to Do in a Retirement Home Trailer Park . . . When You’re 29 and Unemployed

Dana Walrath

Aliceheimer’s Alzheimer’s Through the Looking Glass

The Pennsylvania State University Press University Park, Pennsylvania

Library of Congress Cataloging-in-Publication Data Names: Walrath, Dana, author. | Walrath, Dana. Aliceheimer’s. 2013. Reprint of (manifestation): Title: Aliceheimer’s : Alzheimer’s through the looking glass / Dana Walrath. Other titles: Graphic medicine. Summary: “A graphic memoir of the author’s experiences of her mother’s battle with dementia. Illustrates the two-way nature of storytelling as a process that heals both the giver and the receiver of story”—Provided by publisher. Description: University Park, Pennsylvania : The Pennsylvania State University Press, [2016] | Series: Graphic medicine | Reprint of: Aliceheimer’s / Dana Walrath. Yerevan, Armenia, Harvest Publishers, 2013. Identifiers: lccn 2015048696 | isbn 9780271074689 (pbk. : alk. paper) Subjects: | mesh: Alzheimer Disease | Caregivers—psychology | Mother-Child Relations | Graphic Novels | Personal Narratives | Popular Works Classification: lcc rc523 | nlm wt 17 | ddc 616.8/31—dc23 LC record available at http://lccn.loc.gov/2015048696 Copyright © 2016 Dana Walrath All rights reserved Printed by PBtisk Inc. Printed in the Czech Republic Published by The Pennsylvania State University Press, University Park, PA 16802-1003 The Pennsylvania State University Press is a member of the Association of American University Presses. It is the policy of The Pennsylvania State University Press to use acid-free paper. Publications on uncoated stock satisfy the minimum requirements of American National Standard for Information Sciences—Permanence of Paper for Printed Library Material, ansi z39.48–1992. graphic concept and design: Haroutiun Samuelian /quadrum

Alice and Dana, camping 1960

Alzheimer’s Through the Looking Glass Part One of the Aliceheimer’s Project

Aliceheimer’s found me rather than the other way around. In February of 2008, for the second time in six months, my mother, Alice, was kicked out of her apartment. The reason? Her Alzheimer’s disease. My sister and I looked for alternatives around New York City, her lifelong home. We were hoping to keep her near the relatives to whom she was the closest and near her friends. Instead, she moved hundreds of miles north to live with me and my family in the Vermont woods. Vermont winters are long and cold. She hated snow. I was the daughter who got on her nerves. The feeling was mutual. It wasn’t nobility or martyrdom that led me to think this was a good plan. On the surface, I couldn’t bear to see my mother in the lockdown “memory care” unit. Impaired as she was, all her social graces were intact. Alice was as loquacious, intelligent, and charming as ever, and the people in memory care often don’t speak much. That she knew us might ground her. The unfamiliar fields and woods might curb her wandering and her attempts to walk home. Our farmhouse was peaceful. Nature could soothe her. Although all of this was true, my real motivations were deep down and hidden. We had unfinished business. I wanted to create a bond with my mother, to redo the past, and to fill the hole inside of me. In the middle of dementia, somehow, my mother wanted to do the same. Over the next few years, this is exactly what we did. In the process, all the disparate threads of my life intertwined: creative writing, visual art, and medical anthropology.

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In fact, I was a bitter medical anthropologist when my demented mother moved in with us. Exhausted by years of teaching in a medical school, I was the professor responsible for incorporating culture, diversity, death, dying, and humanism into the required medical curriculum. The last thing I needed was another hard job. Anthropologists often enter the world of biomedicine because U.S. medical schools are required to demonstrate that they have trained their students to be “culturally competent.” The anthropological knowledge that facilitates caring for diverse patients is mandated by national accreditation standards. This cultural competency, unlike anthropological training, is meant to be acquired rapidly, according to the axiom that prevails in medical education: “See one. Do one. Teach one.” As an anthropologist, I wanted to do more. I wanted students to be able to understand medical systems as cultural systems; to see the social and political determinants of sickness and health; to grasp the social aspects of science; and to perceive the racism, sexism, heterosexism, ableism, and other forms of structural violence embedded in biomedicine. As they crammed scientific facts into their heads, I wanted students to witness their own responses to patient stories, firsthand and raw. Though I was proud of the program I had built, I desperately needed a break from that world. That’s when my mother moved in. Anthropologists have a long history of telling stories about the people we study. Our training emphasizes the development of a reflexive muscle so that we can bracket off the ways our personal stories intersect and perhaps even interfere with objective stories. Over time, this reflexivity has allowed anthropologists to consciously blend their personal stories with those of the people they study. For the story of Alice and me, it was a bit the other way around. I was running from anthropology and academia as I started Aliceheimer’s. But somehow the anthropology kept seeping in. Most anthropological stories tend to be wholly verbal despite our evolutionary history, in which visual skills long preceded the acquisition of language. Each of us could see long before we could speak. At birth our eyes can focus as far as 15–20 cm, the distance between the faces of a mother and her infant. Over the coming weeks, the rest of the world comes into focus. But it is months before the first spoken words, years before paragraphs, and many years before paragraphs get concatenated into a story. Pictures also come before words in the earliest cave paintings. The oldest forms of writing were pictorial. The hallowed tradition of illuminated manuscripts brings pictures to story. Despite all this, graphic narratives, comics, bande dessinée, and sequential art by any name have been considered a lower form of storytelling and certainly not part of the academy.

Introduction

I know this much to be true: Graphic storytelling captures the complexity of life and death, of sickness and health. Going back and forth between the subconscious and conscious, between the visual and the verbal, lets us tap into our collective memory, an essential element of storytelling. In the fall of 2010, I made a pact with an artist friend who lives in Beijing to make a drawing a day and to e-mail them to each other. I sent her Alice drawings in part to process my own grief after placing my mother in an Alzheimer’s residence after several years of her living with us in Vermont. But I was also drawing to remember the magic and laughter of that time. I found the story’s voice the day I cut up a cheap paperback copy of Lewis Carroll’s Alice in Wonderland, using the page fragments to make her bathrobe, Alice’s favorite garment. “Apples Are Better” was the first picture that I made for this book. It was only after drawing it in its entirety that I realized that the haloes that had appeared around Alice’s head were reminiscent of Armenian manuscripts, a subconscious reference to her first language, to her reversion to childhood, and to her altered magical state. Cartoonist and author-illustrator Mo Willems has said, “never start drawing a visual story on page 1 . . . it takes time to find the voice.” After that first drawing on page 8, I knew I had found the voice. I went back to page 1 and quickly filled a sketchbook. The original twenty-five drawings—a part of the Brooklyn Art Library’s Sketchbook Project—tell a love story. In turn, the drawings inspired a series of essays, grew into large-scale art installations, launched me into the field of graphic medicine, sent me to Armenia as a Fulbright Scholar, and led to the book you are now holding. This is the power of story. The medium of comics is perfect for telling the Aliceheimer’s story because comics are all about rule breaking. Likewise, the Sketchbook Project reverses the rules of engaging with art and books. Ultimately, the precious originals disappear, and only a digital record remains. So like letting go of someone. For me, as the originals disappeared, new layers emerged. I began to print life-size versions of the digital images onto canvas and large sheets of paper and to embroider the haloes and slippers to honor my mother’s love for mending. As I was sewing, the tangle of threads on the wrong sides of the cloth reminded me of the plaques and tangles of Alzheimer’s disease. To save my fingertips, I began using an awl to poke holes in the canvas for the threads, and another layer appeared. My mother’s father, a shoemaker, must have used an awl each day at work. A picture’s ability to tap into subconscious processes for both the composer and the reader give graphic storytelling its power. I have found that this power can support those with dementia. It can heal and support individual caregivers, and it can help rewrite the

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dominant biomedical story of dementia and how we approach aging globally. This biomedical story is in desperate need of revision. The dominant narrative is a horror story. People with Alzheimer’s are perceived as zombies, bodies without minds, waiting for valiant researchers to find a cure. For Alice and me, the story was different. Alzheimer’s was a time of healing and magic. Of course, there is loss with dementia, but what matters is how we approach our losses and our gains. Reframing dementia as a different way of being, as a window into another reality, lets people living in that state be our teachers—useful, true humans who contribute to our collective good, instead of scary zombies. If you believe that science is the only way to understand sickness and health, then finding the good in a disease state at the end of the life cycle is an uncomfortable notion. But for anthropologists, medicine is not just science but a collection of beliefs and practices. Biomedicine’s power to cure disease and to repair individual bodies has led to its spread throughout the world, obscuring the fact that it is a cultural system and that, like any humanmade system, it has its flaws. Biomedicine locates sickness in a specific place in an individual body: a headache, a stomachache, a torn knee, lung cancer. Medical anthropologists instead locate sickness and health in three interconnected bodies: the political, the social, and the physical.* The prevailing political economy impacts the distribution of sickness and health in a society and the means available to heal those who are sick. For example, poor individuals worldwide are more exposed to toxins that make them sick, while the rich stay healthier. The social body constructs the meanings and experiences surrounding particular physical states. It determines the ideal physical body, legitimizing biomedical practices like plastic surgery to attain it. The social body also determines the boundaries of the physical body. Some cultures locate sickness not in individuals but instead in families or communities. As any caregiver knows, we live the sickness too. And while biomedicine can cure diseases, it flounders with permanent hurts, troubles of the mind, states present from birth or that are incurable or progressive. In biomedicine, these states are stigmatized and feared. We medical anthropologists have a term for this: social death. The squares in this figure represent biological birth and death: emergence from the womb and that final beat of the heart or that final breath. But each culture also defines when life begins and ends, when personhood is conferred or taken away. For example, different definitions of social birth result in the abortion controversy. At the end of life, the social definition of brain death lets physicians, in countries like the United States, harvest organs for transplant, even from someone who still has a beating heart. This isn’t an acceptable medical practice in Japan.

For more on this, see Nancy ScheperHughes and M. Margaret Lock, “The Mindful Body: A Prolegomenon to Medical Anthropology,” Medical Anthropology Quarterly 1, no. 1 (March 1987): 6–41.

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Introduction

Stigma, silence, and social death surround rejected ways of being and echo through the hallways of hospitals, medical school lecture rooms, and textbooks. This is where stories and comics come in. They can rewrite the dominant narrative. Around the world, comic artists, caretakers, parents, and assorted onlookers are taking up their drawing tools, pens, papers, scissors, and computers to depict illnesses and ways of being human that have been stigmatized. This is graphic medicine. The images and words of a graphic narrative bring back the humanity of a person with dementia. We see Alice. She makes us smile. My mother, a lifelong book lover, devoured every graphic narrative that came into the house, even without the benefit of a short-term memory. Watching this convinced me that I needed to use a medium that someone with dementia could access. Comics can reflect the quick wit and intelligence that people with Alzheimer’s disease can retain. The caregivers for the estimated 44 million people with dementia globally are in desperate need of a laugh. Subconsciously we associate graphic narratives and comics with laughter. The medium itself grants permission to laugh at the experience. Laughter is respite. It opens new possibilities for how to cope. Besides needing a laugh, caregivers are a tired group with limited free time. Graphic storytelling has the advantage of speed. Pictures compress narrative. They establish setting and tone immediately. Conflicting realities can coexist in a single image just as they do for people with dementia and their caregivers. Seeing the two realities on a page can make it easier for a caregiver to stop pushing back, to let the more benign hallucinations be a part of life—like when my mother saw my dead father up in the branches of a tree. What seems delusional may be the manifestation of desire. Emotions may be transformed into physical sensations and signal a need for a conversation, as when my mother called me over to check to see whether she had grown hooves and horns. The most amazing property of stories is their power to heal. Facing death, people crave ways to find forgiveness and to heal, just as my mother and I have done over the course of Alzheimer’s. Healing is not the same as curing a disease. Healing involves creating shared social meaning. It does not take place inside of individual bodies. It doesn’t involve surgery or taking a pill. This social process depends on sharing stories with others, on letting our collective memories meet. By meeting through story, we make peace and move on even if we are sick, hurt, or dying. I encourage you to read the book in several ways. Page through to feel the storyline as it exists in the drawings on their own; read it from cover to cover, feeling the long narrative

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carried in the text that was inspired by the images and written over several years; and finally, when your attention is short, as it is for anyone with memory challenges or simply pressed for time, leaf through the book to any page and take in a single vignette along with the image that set that story into motion. Pick up your pens. Tell your stories. And remember that showing the faces, the lived experience, and the daily reality of those with Alzheimer’s and other altered, different states removes the stigma and restores their humanity. Find comfort with alternate realities. Develop a fondness for ritual and magic. Embrace a critical stance toward authority. Understand that medical systems are cultural systems and that rules are both arbitrary and central to social interaction. Know that birth and death are not just biological happenings. Be an anthropologist to your own life. Graphic medicine gives us ways to see the world through the eyes of others. We can better understand those who are hurting, feel their stories, and redraw and renegotiate those social boundaries. Most of all, it gives us a way to heal and to fly over the world as Alice does.

f l y i n g

s u n

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Alice For her seventy-sixth birthday, my mother, Alice, wanted spaghetti and meatballs and vanilla cake with chocolate icing. We gave her a small black kitten with white spots. When she asked, “So, how old am I?” she gave us a new theme song for the year. “Seventy-six trombones? When did that happen?” Seventy-six trombones led the big parade. Alice remembers all the songs from The Music Man and countless others from her youth. The present is more elusive. These days she doesn’t remember that she has Alzheimer’s. But she used to. And she always sings. One May morning, she stood by my dining room windows, looking out over the rolling fields, and sang this bit from Babes in Arms: It seems we stood and talked like this before We looked at each other in the same way then, But I can’t remember where or when. The clothes you’re wearing are the clothes you wore. The smile you are smiling you were smiling then, But I can’t remember where or when. She stopped and she smiled and said, “That should be the Alzheimer’s theme song.” Aliceheimer’s.

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Disappearing Alice Alice doesn’t live here anymore. In September 2007, I was about to give a lecture to first-year medical students on culture and medical decision making when the phone rang. It was the lawyer for Alice’s New York co-op apartment calling me to say that considering the apartment fire the previous month, the co-op was now requiring her to have round-the-clock help. This was the first I had heard of the fire. But it made sense. A few weeks earlier, Peter, my husband, and I had been troubled and perplexed by the state of her home when we drove down from Vermont. Always immaculate and welcoming before, on this hot August day, the heavy air conditioning units sat on the floor in front of windows shut tight. We put the units back in and cleaned, but she couldn’t explain. Alice’s memory of the fire department removing the units to allow the smoke to clear had disappeared. We set up round-the-clock care, but she hated it. “They follow me around, like the Gestapo,” she said. A proud, hardworking career woman, she had done all the cooking and cleaning for her family of five, without any outside help. Next, we tried a onebedroom apartment in a nearby senior living community. After she kept trying to walk home, they said her only option with them was the lockdown Alzheimer’s unit. They urged us to find another solution because she was still too well. That’s how she came to live with us. She lost her own home. Alice was disappearing. Often, the “internal governor” of people with Alzheimer’s also disappears: they say exactly what’s on their mind. This disappearance lets new things appear. Alice found parts of herself that she had kept hidden, from her children anyway. She wished out loud that she had gone to medical school instead of becoming a biology teacher. The years of her pushing me in this direction and away from creative work made sense at last. And when she stood in my kitchen admiring the cabinet knobs I had hand-painted and said, “You should quit your job and make art full-time,” her loss was my gain. Aliceheimer’s.

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None Is Hard to Draw When my father was dying of lung cancer, my mother seemed to be in denial. In retrospect, she was in Alzheimer’s. She couldn’t take in and process the fact that he was terminal. I was with her when the oncologist came into his room to share the pathology report a few days after the surgery that removed the cancerous lobes of his lung. With tact and compassion, the doctor said that his pathology report was a death sentence. I heard her. But for my mother, the doctor’s information just floated away. There was no way to attach this idea—that soon there would be no more Dave—to something else she already knew so that she could hang onto it. It’s kind of like trying to make a drawing of nothing. No frame of reference makes it difficult. Memory creates our frames. I was another story altogether. A hyperactive, accident-prone, wild child, I had always exhausted my mother. Young motherhood for her was a time of scarcity. She ran out of time, of energy, of patience. But she retained this frame of reference so that years later when I came to visit, to help my father recover (her view) or die gracefully (my view), she knew I had changed. She hugged me goodbye at the end of a visit. “Dana, you were such a help. I don’t know what we’d do without you!” Then she pulled away, looked up at me, shook her head in disbelief, and said, “And you used to be so annoying!” I’ve always been a sucker for sweetness. Aliceheimer’s.

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disappearing Alice. . .

. . . none is hard to draw

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Missing Pieces Alice was always beautiful—Armenian immigrant beautiful, with thick, curly black hair, olive skin, and big dark eyes. But as a girl in New York, she wanted soft golden hair, and everything that went with it. She was scientific about her quest, Lamarckian specifically. When she stirred the yogurt and garlic sauce over the stove with a wooden spoon so it wouldn’t curdle, she pushed her nose up with her other hand, convinced that eventually her nose would turn up that way. She stayed out of the sun after she realized which men whistled at her at Rockaway Beach. Still, when she went through the cafeteria line at Duke University in the mid-1950s, my fair-skinned father overheard the cashier say, “I didn’t think they let them in here.” Alice is still beautiful. Her skin is remarkably soft and unwrinkled. Until the end stages, when facial expressions and the ability to move disappear, Alzheimer’s remains invisible. The missing pieces stay hidden. Hiding has always been Alice’s friend. As a child, I didn’t understand her distorted affinity to all things blond. Although we ate yogurt long before it became available in the grocery stores, we spoke no Armenian at home. She married an odar—a foreigner, an American. Our job was to fit in, to leave most everything Armenian behind, to become blond. Now, when she looks in the mirror, I guess it isn’t just age, or the weight she has gained with Alzheimer’s, that drives her to say, “I look awful.” But other times, blond values disappear. She comes down from her room for dinner with necklaces and vibrant scarves draped around her shoulders, strands of beads woven through her hair. She feels lovely, like an Armenian princess. Aliceheimer’s.

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Flight The summer I was fifteen, just as I was about to fly alone to Brazil, I read Erica Jong’s Fear of Flying. Bad idea. I checked in with my mother, Alice, about my mounting trepidations. She said, “Driving is far more dangerous, and you get in a car with me almost every day.” And that was enough. Mothers know things. So do teachers. My mother possessed a double dose of authority and confidence. She has kept this voice through Alzheimer’s. She is as certain of her hallucinations and the stories she uses to make sense of a fragmented world as she had been of the Krebs cycle, Mendelian genetics, or the Hardy-Weinberg theorem. A mother and teacher myself, I’ve used this same voice to make her stories and hallucinations safe, normal, not something to challenge. When she was certain that her own mother, who died in 1954, had just been sitting on the sofa in the living room and talking with her, she would say, “You see her, don’t you?” I’d say, “I can’t see her, but I’m sure you can. You have special powers. You can see things that we can’t.” For her that was enough. As her old powers continue to fade, she uses this voice to keep going. She had been an avid New York Times crossword puzzle person. As even Monday’s puzzle became too hard, she switched to Scrabble. But increasingly, as words eluded her, this voice continued to help her win. She created new words with ready definitions: mladz (mə-lˇadz’) n. term of address for a group of young men; pissquilch (pˇis’-skwĕlch) n. small bird native to S. America; drends (drĕndz) n., pl. sweepings that don’t make it into the dustpan. Challenge her? Never. I just wish I had photographed some of those boards. Aliceheimer’s.

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Alice Ungrounded My father was the one to read Alice in Wonderland out loud to us on the big stuffed chair, my brother and I saddle-bagged on either side of him. But it was my mother who took us to the library. Long before I could read, she brought me there each week to borrow a tiny Beatrix Potter book, even though I, like Peter Rabbit, had a tendency to break the rules in between these trips. She still loves books. I’ve watched, boggled, as she reads without the benefit of a short-term memory. And yet she does it, daily. Even as her mind was losing ground, trips to the library still brought out her curiosity, her reverence for books, and her best inside voice. I continued to take her to poetry readings and author talks when she lived with us, with mixed results. She fussed in her seat as the brilliant Alistair MacLeod spoke and then read the haunting account of the narrator’s memory of the accident from No Great Mischief: “. . . it was dusk and out there on the ice, they lit their lanterns, and that too was seen from the shore.” In her worst outside voice, Alice said, “My God! He’s very long-winded!” Trapped in the middle of a row, I promised her ice cream if she could stay quiet. After that day, I followed the rule of aisle seats and exited at the first sign of trouble. But other times the stars lined up, and she was transported by the words. On those days, she loved standing in line to get her book signed, unaware of the family rule I’d broken, buying the book instead of borrowing it from the library. On quiet afternoons at our house, you could hear my mother reading out loud to herself, her intuitive effort to bring the information in by another channel, to make it stick. Witnessing this led me to revive the family bedtime story, a ritual that improved her sleeping, and that helped me find our common ground. We started with Anna Sewell’s Black Beauty. The first night, she checked in about the voice. “Horses can’t write, can they?” She listened with the rapt, wide-eyed attention of a child, moaning when any creature large or small was harmed. When Black Beauty struggled to be well behaved, Alice whispered to her stuffed bear, “It’s hard to be good, isn’t it?” Aliceheimer’s.

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Aliceheimer’s “Dana, am I going crazy? You would tell me if I had lost my marbles, wouldn’t you?” I’ve heard these questions many times. Repetition. Anyone who lives with Alzheimer’s knows from repetition. As her rudder, I always supplied Alice with the same steady answers. “No. You’re not crazy. You have Alzheimer’s disease so you can’t remember what just happened.” “Oh. I forgot. What a lousy thing to have.” “Would you like a cup of tea?” “Ohkh.” Alice used the guttural Armenian sound for deep satisfaction. “I would love a cup of tea.” This ritual soothed us both. Anthropologists know that repetition calms worries and fills in unknowns. I’ve asked medical students to consider the ways that rituals, repetitive actions with symbolic meaning, heal. What do the white coats they always wear, or the repetitive sequence built into the ritual of the physical exam, say to their patients? Hand washing protects from germs, but it is the white coat that grants permission for those cool, clean hands to linger and squeeze the soft vulnerable throats of a sick person clad only in a loose gown. White coats, the disinfectant bite in the air of the exam room, the rustle of the roll of paper on the exam table—these never fail to transform my mother into a trusting patient. These clinical rituals have always helped her find her marbles. Repetition alone does not make a ritual. But add a dose of symbolism, a hero or two, and a ritual is born. Our three grown sons joined my mother, Peter, and me for dinner only on occasion. At all the other meals, their seats were empty, and she repeated her question: “Where are the boys?” For weeks, Peter gamely fielded the question with all kinds of stories about who they were with, or how they got where they were. But the breakthrough moment, the transformation into ritual, took place when he typed up a little story, just a paragraph, about each son. Below the boys’ bios, he added pithy quotes by some luminary, such as Mozart: “Love, love, love, that is the soul of genius.” When she asked “Where are the boys?” we gave her the paper. The magic of reading neat typed text, the sheet of paper, a dash of Mozart, the silence while she read— these satisfied her as none of our verbal exchanges ever could. “Thank you. This is very helpful. What a good idea to write this up.” Then with the paper beside her, the repetitive questions settled down for the rest of the meal, till it was time for a cup of tea. “Ohkh, I would love a cup of tea.” Aliceheimer’s.

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Apples Are Better Alice was never a starving Armenian. Still, she dreamed about food, the way a starving person might. Most people with Alzheimer’s lose interest in meals. Instead, hunger consumed her. Her particular conformation of plaques and tangles set up short circuits that reintroduced hunger within an hour of eating. What stuck to her insides was not the memory of her last meal or snack. She went from trim and stylish to quite large. Off to Lane Bryant. Alice’s parents did in fact starve, barely surviving the genocide of 1915, when hundreds of thousands of Armenians were marched into the Mesopotamian desert, without food, to die a slow death. I used to wonder if starvation in one generation might account for a run of obesity in the next. My slender mother stood out among her fat female cousins, all of them first-generation immigrants. In the second generation, I was lucky enough to inherit a healthy Mediterranean diet rich in vegetables, fruits, whole grains, yogurt, and olive oil from my Armenian ancestors, as well as normal attitudes about food from my mother. Now that Alice is simultaneously starving and fat, I sometimes wonder if her hunger is a distant childhood memory, perhaps one that even spans generations. As soon as she learned to speak English, in kindergarten, little Alice was the one sent to the butcher to ask for free bones for the dog. No good Armenian would ever have kept a dog in a New York walk-up railroad apartment in 1938. Those bones she brought home made for good soup, thick with slices of day-old bread. No, she didn’t starve when money was tight. Alice’s neurologist kept imploring us to watch her weight. We watched it go up. We did our best to honor her needs as well as his concerns. We kept bowls of fresh fruit and vegetables out on the counter so she could pop little loligner (Armenian for tomatoes) into her mouth like candy. A similar bowl on a table near her bed allowed her to eat and head back to sleep without interrupting my sweet dreams. I was fresh the morning after the night that broccoli grew from her ears. When she told me that she would rather have apple trees with new fruits appearing every time she reached out to pick one, I knew she was on to something. Aliceheimer’s.

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Up Alice often sees my father high in the branches of one of our maple trees. At first I wondered if he was “up a tree,” as in a difficult or embarrassing situation. Or was it Webster’s sense of the phrase, “to put into a position of extreme disadvantage”? Or was he like the possum up the gum tree, safe from the dogs, breathing hard from the chase, but still kind of stuck? My father, Dave, isn’t about to tell us. Lung cancer treed him, and he died in 2006. After fifty-two years of tumultuous marriage, Alice and Dave were tightly bonded, as with superglue. They often expressed their love through bickering. Counseling to find less stressful ways to relate didn’t appeal to Alice. Hence, my interpretation of my father’s treed position. With time, though, the meaning of Alice’s seeing him up in the tree became clear. It is longing—longing for him, longing to make amends. And there he is, up in the branches, waiting for her. Sometimes when Alice knows that she is seeing something that I can’t, like my father up a tree, she will say, “Do you remember that time that Dave climbed a tree and we were looking all over for him, and then when we were about to give up, he called out to us?” She’s a good storyteller, and like all of us, she uses story to make sense of the world. Though she was raised and baptized in the Armenian Church, my mother was never religious. She, like my father, who was raised by his communist grandmother, was spiritual but not religious. My siblings and I followed our friends to everything from schul on Saturdays, to Methodist Sunday school, to Quaker meeting. When Alice looks up and sees Dave, her old self would never have called it heaven. But her new self is flexible enough to use the word heaven metaphorically. Her new self also embraced Hakomi therapy, a mind–body integration method that taught her to use her own body gestures to process and express regrets. With Martha Whitney—a gifted therapist who tracks her clients with the deftness of a Diana monkey moving through the trees—Alice has learned about her own gestures. When she misses Dave, she puts her hand on her breastbone and moves it back and forth and looks up. Now, even if Alice is inside, and it is night, and she can’t see the trees, and she asks, “Where’s Dave?” we can tell her to place her hand right there and to look up. As her hand moves back and forth, she smiles. She always says, “Ah yes, I see him. There he is.” Aliceheimer’s.

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Fairy Pirates Alice escapes the captivity of Alzheimer’s through story. Pirates, the ultimate hostage takers, often lend her a hand. I haven’t seen these pirates myself, but it’s clear they are pirates with a dashing Johnny Depp-ness, or the crimson glow of the young Burt Lancaster. Alice sings with them. They laugh together on the ship or the island. Hints of another Burt Lancaster beach scene seem to linger about her after they let her go, famished but content. I like these pirates. A few days ago, I was on the phone with a kind young woman from TIAA-CREF straightening out some mysteries Alzheimer’s had introduced into my mother’s retirement accounts. At the end of the transaction, she told me about her grandmother who had been stuck in the year 1973 by Alzheimer’s. Alice floats around in time. When the pirates come, she is anchored around 1954, the year she graduated from college and got married at age twenty. Was it traces of familial recognition that kept Alice from mistaking her three twentysomething grandsons for dashing pirates? Peter, their father, did not have the same luck. Once, when I was away, the pirates turned threatening, and she made him into her fellow captive: “You get into that bed right now, because if I’m not pregnant by tomorrow morning, they’ll kill us both.” When Peter told me, it was like someone had just hoisted the Jolly Roger up the mast to warn us of new danger on board our mother ship. Peter, calm even in captivity, told my mother, “I’m sorry, Alice. That won’t work. I’m your son-in-law.” She shifted course immediately. “Oh no. You’re right. That won’t work.” Then, a long pause. ”Who’s my daughter?” “Dana.” “How old am I?” “Seventy-six.” “Seventy-six trombones?” Seventy-six trombones led the big parade. Alice sank the pirate float. Aliceheimer’s.

29

It Takes a Village (with a Dog) My mother, Alice, and her sister sublimated their sibling rivalry through their respective preferences for cats and dogs. I grew up in the cat family, but when I moved my own family to Vermont, I replaced the aloof, feral beauty of cats for the loyalty and unconditional love of dogs. When Alzheimer’s led Alice to live with a large yellow dog (we are a package deal), she was, in a sense, living with the enemy. Herbie courted and eventually charmed Alice. Soon she was saying, “He’s nothing like my sister’s dogs.” It began as symbiosis. When Alice preferred ice cream to lunch, Herbie obliged and took care of the first course. He helped with the ghosts or robbers she imagined lurking behind the sofa or the trees. “I feel safe when I’m with him. He’ll protect me.” But most of all he gave her dignity. Instead of curbing or preventing the “wandering” of Alzheimer’s, as the Mayo Clinic advises, we could let her go out with Herbie by her side. The two of them could go out for short walks down our long driveway and then up the dirt road. Alice craved this independence. Herbie was the visual cue that kept her grounded. He always knew the way home. In the summer, Alice always returned with a small bouquet of wildflowers. “These are for you,” she would say. Once, Alice wandered all the way down to the paved road; Herbie, the MedicAlert bracelet, and good neighbors saved the day. A Good Samaritan driving past saw she was a bit disoriented and stopped. When Alice got in the car, Herbie tore back home barking in alarm. Next door, Dan and Betty had seen them go down the hill and heard Herbie barking as he came back alone. A call to the police quickly revealed that the driver had taken her a couple of miles down the road to the gas station and store, where Alice sat happily eating a sandwich the kind-hearted manager had given her. Even with this near miss in the fall of 2008, we still let her walk with Herbie. Taking on this bit of anxiety let Alice keep her dignity. Herbie made it safe. As Alzheimer’s progressed, it became harder for Alice to take long walks, but she still shared certain foods with Herbie. He joined her on short walks down the driveway, coming to retrieve me if she took the wrong path from the driveway to the front door. In return, Alice would tell us, “He’s almost enough to make a dog lover out of me.” For Herbie, that’s more than enough. Aliceheimer’s.

31

Sublimierung und Selbstverachtung “Dana, can you come here?” Alice called from the sofa, her voice high and panicked, as though a bat might be circling overhead. The blanket that I had tucked loosely around her toes at the start of her nap was now pulled taut. She gripped it from underneath. Only her eyes and the top of her head peeked out. “I think I grew hooves. Can you check?” She let me peel back the blanket to see. “No hooves.” “You sure?” I touched and counted each of her five fingers and toes for good measure. She started to relax. “And my head? Is it okay? There’s nothing growing there?” “Just your hair.” I stroked her head to show that it was smooth, that I wasn’t working around hard pointed horns. “Thank you. That’s such a relief.” It was a moment more intimate than the daily help in the bathroom. She had revealed her deepest fear—that she was no good. It was an intimacy born of Alzheimer’s, expressed in its language of hallucinations, assertions, and questions. “Are you feeling bad about yourself?” I asked, my hand still resting on her hornless head. She swallowed hard. “I wasn’t very nice. I wish I had done better.” “You did all right.” “How do you know?” Like a student of medicine, she wanted an algorithm, a system, proof. “Did you know that to die in peace, everyone needs four basic things?” “Like the food groups?” She sat up taller. “What are they?” “To be loved.” I rattled off a list of people, leaving off the hot spots. Each name brought a nod and a fresh dreamy smile. “To love others.” I repeated the list, and her nods were emphatic. “To forgive others.” She paused a moment, then said, “You know I would never have gone to college if my sister didn’t pave the way.” “And to forgive yourself.” She took a deep breath in, then let it out. “Forgiving yourself is the hardest.” “I know. . . But you were younger then. Maybe you could cut your younger self a break?” “Where’d you learn this stuff?” “Not from you.” She laughed. “I know that. But it’s still good.” Aliceheimer’s.

33

Sundowning In 1973, my parents moved up in life. Fifty-five vertical steps from the street to the front door gave us excellent cardiovascular health along with a spectacular view of the Hudson River and the Palisades cliffs beyond. From her bedroom, in the front of the house, my mother, Alice, loved to watch the Palisades glow with dawn light. She treasured this quiet time alone before the rest of us woke, before a day in the classroom, before errands on her way home. At the other end of the day, as the sun dropped behind the cliffs, the golden ginger light wafting into the living room cast a powerful spell on her that often pulled her away from the kitchen. Dinner could wait. The first time that a family friend visited and saw the view during one of these magical sunset moments, he said, “Alice, you’ve arrived.” Now sunsets sometimes bring a different kind of magic. Black magic. Stories come alive. Newsreels from her childhood come back through the ether. Phantoms appear. The Mayo Clinic defines sundown syndrome as “a state of confusion at the end of the day and into the night.” While its cause is unknown, the shape of the phantoms can give clues about how to make sunsets clear and safe again. I hovered that time of day, pulling Alice into the kitchen to do something familiar as the light, and reality, shifted. She was slicing green peppers into the tiniest cubes when she said, “It’s good you came along when you did. I would have drowned. Papa would have been so mad at me. I promised not to go there.” That afternoon she had read Marion Dane Bauer’s On My Honor, the story of a boy consumed with guilt after his best friend drowns when the two of them sneak off to swim in a forbidden river. “Papa would forgive you,” I said. When the witches came, I asked her what they looked like. Sure enough they were of the Wicked Witch of the West variety. In my best Glinda voice, I told Alice that I spoke with the bad witches and explained that they weren’t allowed at our house. “They listen to you?” “Sure.” “I’m glad I’m with one of the good witches.” I was honored. We never shifted dinner time to five o’clock, as Alzheimer’s residences do in order to ease the pain of sundowning. To keep our lives normal, we waited for Peter to come home. We worked in the kitchen, mindful of the spirits who were there with us. Once they and she had settled, we could step outside together to see the evening colors spread across the Vermont sky. Aliceheimer’s.

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Light, Years, Later “This meat is delicious,” Alice said as she scarfed down another big bite of fresh grilled steak. Alzheimer’s brought out her inner carnivore. Peter and I accommodated. “I don’t dare ask where you got it.” Alice glanced over at the dog. “It’s from the country store.” Our country store carries meat from local farmers. “But where did they get it from?” She looked at the dog again, avoiding eye contact with me and Peter. “Isn’t there rationing?” “Oh no! No rationing. Don’t worry.” She always gives us clues about her whereabouts. “Are you in World War II?” She nodded. Hallucinations? Visions? What to call them and what they lead to on the beatification-incarceration spectrum all depends upon frame of reference. Culture, the bread and butter of anthropologists, lays out the rules. Some arctic cultures require healer trainees to have visions, perhaps because they’ll ensure that the healer will understand the sense of displacement that goes with being sick. Sticking with science, biomedicine defines visions as symptoms to be eradicated. The Mayo Clinic describes the cause of the symptoms, Lewy bodies, as abnormal structures in the regions of the “brain involved in thinking and movement.” My scientific mother, Alice, can grasp the histology of these abnormal round structures. Although biomedicine has no way to eliminate these Lewy bodies or the plaques and tangles of Alzheimer’s, she still believes in the power of science to make things better. Peter and I had other bodies on our minds. We needed more than biomedicine could offer to make peace with the Japanese soldiers that sometimes emerged from her memory of a 1945 newsreel to surround our house at sunset. Instead of insisting that the soldiers weren’t there, we used another branch of science to interpret Alice’s visions: space time travel, her special power, accommodated simultaneous realities. It’s relative—I’m sure Einstein would have approved. I passed her a second, smaller, piece of steak. “I’m here in 2010 where there’s no rationing. You can just go buy meat at the store.” “So you just got it from the store?” She savored the next bite. Instead of looking at the dog, she blotted her lips with a napkin and studied Peter for a long moment. When her eyes met mine again, she tipped her head back toward Peter. “So where’s he?” Aliceheimer’s.

37

Umbilicus I was never close to my mother, not counting those first nine months and the six months that followed when she breastfed me, unlike most mothers in the scientific 1960s. “We’re mammals! Of course I breastfed you,” she had said when my first son was born. And there were all those fine meals and a clean, enticing home filled with unusual things: two large, striking oil paintings by her friend Gaylord Flory; a hand-knotted rug from Libya; a carved wooden chest from Brazil; and a backyard with a vegetable garden surrounded by fruit trees. But no, we were never close until Alzheimer’s. It wasn’t Billy Collins’s “worn truth / that you can never repay your mother” that led me to have her move in with us when the lockdown Alzheimer’s unit was her only other option, though we read his poem, ”The Lanyard,” together many times. It was our unfinished business of finding a good “close.” When I was little, frugal Alice would let me nibble off the remaining bits of red from around the excised stem of a tomato if she was cutting one for a salad. For her, I always kept a bowl full of ripe red tomatoes out on the counter for the taking. Competitive? You tell me. “Can I have a toe-Mah-toe?” Alice used her My Fair Lady voice and held her pinky out when she asked for one. “Help yourself.” “My mother wouldn’t let us do that.” “Mine didn’t either.” “Ohkh. That’s hard.” Alice gives the best empathy. “I kept a saltshaker hidden in my tree fort and would sneak tomatoes from the garden and eat them up there in the fort.” “Very clever. I wish I had thought of that.” “Thanks. But you didn’t have a tree fort or a vegetable garden when you were little.” “No. That’s right.” Alice took another bite. ”Where did I live?” “You lived in a walk-up railroad apartment on 56th Street back when that was still a bad neighborhood.” “233 East 56th Street.” Six stories, multiple apartments on each floor, with a shared toilet in the hall, her building is long gone, replaced with nondescript offices. “And there was a slaughterhouse and meat-processing plant down where the United Nations is now.” I learned this fact when I was doing research for a novel.

39

“The smell was horrible.” “I can imagine.” But the best facts I learned straight from her. “Sometimes my mother stewed a lamb’s head for supper. I wouldn’t touch it. I’d go to bed hungry. But my sister, she loved it.” Alice reached for another tomato. “You know, you must have been a cute little kid. I wish I had known you then.” “You too.” Aliceheimer’s.

41

Because You Are My Mother “Dana, why are you so good to me?” I had just finished helping Alice get dressed. Picking out clothes to wear and getting them on by herself was long since too hard. Now I stood behind her brushing her hair as she sat at her dressing table. Our eyes met in the center of the three-part mirror that had stood like a folded screen on her dressing table for as long as I could remember. “Because you are my mother.” Big pregnant pause. “I’m your mother?” And another. Alice turned to face me. “Who’s your daddy?” “You were married to Dave. You had three children. Mark is the oldest, then me, Suzy is the youngest.” “Ah, yes. I remember.” Alice turned back and I kept brushing, watching her through the mirror. She looked up and found my eyes in the reflection. “I wasn’t very good to you. I’m sorry.” Unfinished business. That’s one of the reasons she was here living with us. But I never imagined I would hear these words stated so simply. “Thanks.” “So you forgive me?” “Of course.” On an intellectual level, I had forgiven her years before. “How come?” “Because you did the best you could.” I knew that if I wanted it, Alzheimer’s would let us have this conversation every single day. But forgiveness is also action, action that lets me redo the past. I wanted to stand at this same dressing table and brush her hair without yanking, without getting annoyed at her knots and chopping all her hair off. I wanted to listen to her as she spoke about her day. I wanted to guide her through uncharted territory. I wanted to face sickness of the mental sort straight on instead of sweeping it under the rug. The rhythm of the brush soothed us both. When I set the brush down on the dressing table, next to a bowl overflowing with the strands of beads that Alice loved to wear, she turned around to face me again and said, “Running a hotel must be very hard.” Aliceheimer’s.

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Falling Slowly Remember Dave? Alice still sees him when she looks up. Right after Dave died in August of 2006, Alice explained her memory loss to me: “It’s like a curtain dropped, and I can’t remember anything after that first year with Dave.” This was prediagnosis, though she had plenty of signs. I had hoped that mourning him had her stuck in 1954, the year they married. Looking back, it is clear that by then Alice had been falling slowly down the rabbit hole for several years. Dave had been worried about her memory, but when he was alive, she was grounded and she functioned. That he took over many of her tasks seemed a natural part of this kind man’s retirement. Alice and Dave met in chemistry class at Albany State Teacher’s College. She had lab early in the week. He had lab later. She worked in the cafeteria so he would come through the cafeteria line and check in about the lab. “I had a very pretty roommate, Betty—she was blond, you know. All the guys were after her so I was used to them getting to know me to get to her.” Alice ranked according to color. Dave did not. At the ball game with Betty and the gang, Alice and Dave spent the entire time talking about Thomas Malthus’s “Essay on the Principle of Population”; in a nutshell, Malthus’s position was that unchecked, population growth is exponential while the growth of the food supply is arithmetical, dooming populations to outstrip their resources. In less theoretical terms, Alice realized he might be interested in her. This tableau of my early beginnings always makes me think of Malthus as a kind of “straight man” to Charles Darwin and Alfred Russel Wallace, who realized that evolutionary biology is all about sex. Alice and Dave’s first serious conversation at the ballpark eventually brought them to home base. Alice became a biology teacher, and the axioms of biology pervaded our home. When I was little, sometimes she would pat my head and tell me I had “hybrid vigor.” We all learned basic genetics on account of color blindness in the family. My father, like his maternal grandfather who raised him, Alice’s father, my brother, and two of my sons had this X-linked gene—a small mutation that keeps a person from being able to distinguish reds from greens but lets a person make close distinctions among all the shades of neutral. Dave loved the dappled light, the shimmering neutrals, of the forest. Now after many tumultuous years, Alice sees Dave, once again, in that light. She is again falling slowly, into love. Aliceheimer’s.

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The Lobster Quadrille Alice practiced dying on a regular basis. “Get a shower curtain or something to put under me, would you?” In the middle of Alzheimer’s disease, she retained the bit of scientific knowledge that our bodies let go when we take that last breath. “I don’t want to make a mess.” Rehearsal usually happened around sunset. I would sit with her, my dead father and her parents hovering in the air around us. Alice took tiny steps toward them, then back to me—our own “Lobster Quadrille.” She was truly in between, liminal, as in a rite of passage between two social states, transcending two worlds, though physiologically she had no signs that biological death was nigh. Will you, won’t you, will you, won’t you, will you join the dance? In the middle of Alzheimer’s disease, Alice knew that we needed to practice because death and dying remain relatively hidden in our culture. Our medical system equates death with treatment failure. Medical personnel hand off the situation to another kind of expert—religious perhaps, or secular, the funeral home director. Alice knew death was coming, so we needed to rehearse. In our culture, where death is taboo, and aging is not celebrated, a person with Alzheimer’s experiences a social death long before his or her heart stops beating. Somehow, for the rest of us, they are not as fully human as they once were when they no longer recognize their own families, can no longer speak. The rules for interacting with them and caring for them shift. In the middle of Alzheimer’s, Alice somehow knew this death was already happening, so we needed to rehearse. As a good member of my culture, I knew that “recognition” was the socially legitimate threshold for changing the rules of care. When Depends™ alone could not solve the problems of the body letting go, Peter and I came to the end of being able to continue with Alice in our home. The transition was okay—we had rehearsed. Would not, could not, would not, could not, could not join the dance. A few nights before Alice moved, she gave us a story to explain the transition to others: I had just tucked her into bed and had gone down the hall to my room when I heard her calling loudly. As I ran back to her room, I could make out her words. “Lady, lady, lady!” I opened the door. “What’s up, Na?” “I just wanted to know your name.” “Dana.” “Pretty name.” “Thanks. You gave it to me.” “And if I just call, you’ll come?”

47

“It might not be me, but if you call, I promise you, someone nice will come.” “That’s good. Thank you. I’ll sleep well knowing that.” Will you, won’t you, will you, won’t you, won’t you join the dance? Aliceheimer’s.

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Through the Looking Glass A patch of four-leaf clover grew in the field outside my fourth-grade classroom. Still years before I took biology in ninth grade, before I understood genetics, I had noticed that four-leaf clovers grew together, spreading their luck to each other, so there would always be one there for me. I went every day after school to find one, when it wasn’t winter. During the winter months, I looked through my classroom window and could see them waiting for me under the glaring snow. I didn’t tell the other kids you could find four-leafers there. I just brought one home every day and gave it to my mother, Alice, hoping she would smile. She slipped it between the heavy glass top and the wood veneer surface of her dressing table. Two mirrors always graced this dressing table: a standing, three-panel mirror and a heavy, handheld one, whose silver back and handle surrounded an oval of beveled glass. I was a little girl, with Alice in a junk store, when she found the smaller one. She could see through the dirt and tarnish to the nymph with the long flowing hair spread across its back. But she didn’t let on as she bargained the shopkeeper down a buck and cut its price in half. In the car she explained silver to me, how it tarnishes when exposed to air, how they paint it onto one side of glass to make mirrors. Sometime long before Alzheimer’s disease brought Alice into my home, the glass top of the dressing table was lost, tossed after it cracked, perhaps, leaving the wood veneer exposed. Now the table and mirrors are with Alice in memory care. Move-in instructions say things like “label everything,” and “we are not liable for property that gets lost, damaged, or stolen.” Clothes come and go, and so do her hearing aids. My sister and I had to choose which things should move with her. It’s hardly a choice of the magnitude of the one King Solomon posed to the mothers or the desperate choice of poor Sophie. But still, it’s a balance of well-being—hers and ours. If that handheld mirror stays there with Alice to ground her, we will likely lose the chance to hold it in our hands and feel her after she is gone, looking at us through its glass. No doubt, the old Alice would tell me to get the mirror out of there. But the mirror stays on. We can’t imagine her at her table without it. Glass once again covers the dressing table’s wood veneer surface, Plexiglas this time. Alice had started peeling the veneer off the table’s naked top. Personal nakedness, on the other hand, poses no problems for Alice. The other day, when I called, I asked her how she was, a reflexive question, born of my own discomfort. “I’m great!” she said. “I just took a bath, and I didn’t have to do any of the work.” Aliceheimer’s.

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Alice’s Wonderland It was a young day, a cold one, around 1938, when we arrived to visit Alice in memory care. Peter and I had come straight from a red-eye to JFK in 2011. “Peter, Dana. What a surprise! Do you live here too?” Alice was enjoying a late breakfast of French toast and sausage, after four days in the hospital. She wore an appliqué-style Christmas sweater, appropriated from another resident. The backs of her hands were bruised purple-black from the IV lines. I kissed the top of her head. “No, we’re here to visit you.” I handed her a big bright bunch of African daisies. “Those are for me? How nice!” Residence protocols for vomiting and fever had led to an ER evaluation on Christmas Eve. My sister, who now has the burden of the local caregiver, had explained to me that irregularities on her chest X-ray and a diagnosis of pneumonia led to an overnight observation. As the Christmas holiday schedule turned one night of observation into three, I prepared for a diagnosis of lung cancer. None came. If Alice still lived with us, perhaps we could have avoided the hospitalization and treated the pneumonia, what used to be called “the old man’s friend,” at home. A little cancer could also be a friend, escorting her away from further loss of dignity. When I spoke to Alice on Christmas Day, she was as unaware of the calendar as she was of her location. “I’m home. Joe is here helping me.” Some Joe. As early as 2000, phone calls with her always included the question: “Where are you?” That Christmas call was no different. “We’re in Colorado, visiting Tavid”—our middle son, her third grandson. “It’s good you could go, especially when you had to miss that trip to Borneo.” Alice can always find the bright side. Maple syrup dripped onto the chickadees romping among the holly bushes on Alice’s sweater. Before Alzheimer’s, her tongue would have been as sharp as holly leaves about this particular fashion statement. “How are you?” Peter asked. “I feel lucky.” She smiled so hard her eyes disappeared. “Flowers, French toast, and now you!” She put down her fork and stroked the back of one hand with her other thumb. She looked down at her bruises. “How did that happen?” “You were in the hospital for a few days. That’s from the IVs,” I explained. “It hurts.” Her lower lip curled into a deep pout. I stroked the tops of her hands. “Ohkh, thank you. You’re a good nurse.”

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My unclear provenance began long before Alzheimer’s. When I was in grade school, neighbors and strangers alike would say to me, “Your mother, brother, and sister look so much alike. Where did you come from?” The adopted kids who lived across the street were fair and freckled, like me. Adoption could explain why I didn’t have dark skin, hair, and eyes. It could explain why my mother said it was my fault when my older brother raged. When Alice first moved in with us in 2008, she needed to talk about my brother, to explain. She first began to worry when he was eighteen months old, and the other young mothers were unwilling to do playdates. What she didn’t say was what I had always thought: that my job was to prove that he was normal, that we deserved the manicured lawn, the two-car-garage American Dream—Alice’s Wonderland. I arrived eight months after the playdates vanished. Alice taught me to play nice no matter what. She taught me excruciating politeness and the social graces that serve her so well in her decline. I hid sweets in my room for comfort. The chocolate Easter bunny was the biggest challenge. How could I make it last all the way till Halloween, when I would have plenty of candy to last till the chocolate Santa that lasted through the Valentine hearts that always lasted till Easter? I stood very still to get as close as I could to baby rabbits, staring into the single eye on their profiles. They kept track of me on the grass, never blinking, scraping surfaces up and down with their teeth. That’s how I ate my bunny, in small scrapings that melted in my mouth. The chocolate spread to every taste bud even though it was one tiny flake. Alice looked down at her bruised hands again. “How did that happen?” “You were in the hospital for a few days. That’s from the IVs.” “It hurts.” Her lower lip curled down again. She held both hands out in front of her like a baby bunny. I took her hands and kissed them one by one. “Ohkh, thank you. That feels better.” Again her eyes disappeared into her smile. “Are you my mother?” “I’m your daughter.” “That’s nice.” It is nice. At last. Aliceheimer’s.

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Before Wonderland, NYC circa 1944

See Jeffrey Eugenides’s Middlesex for the precise geographical boundaries of the Hair Belt.

*

“I just got my period,” my mother, Alice, told me with a shy smile from the passenger seat as I drove us along Vermont Route 15. “It’s the first time, you know.” “That’s so nice!” I said, patting her hand. “You’re growing up.” I had always wanted a daughter. Alice blushed. It was a young day, a cold one, around 1944. Alice felt eleven. I hoped there wouldn’t be a puddle on the seat when we got out of the car in 2009. “Let’s get a treat to celebrate!” My upbringing included no talks about bodies, let alone kissing or sex. Even with ancestors from smack in the middle of the Hair Belt,* my mother never spoke about any of the hairs that appeared at adolescence, or how to cope with the more public of them. If it were not for the grade school body talk and filmstrip, I might have seen blood and assumed I was going to die when my first time came. Instead, I told my mother, as instructed. She handed me some pads, a belt, and some small paper bags. She admonished me to dispose of the evidence with the greatest care, lest my older brother see anything. The blood might traumatize him. I double bagged and smoldered. The rage only surfaced when facts from the filmstrip didn’t pan out. No. Bleeding doesn’t stop when you go swimming, that is, if you are from the Hair Belt. Though I never knew my maternal grandmother, I could imagine her response to young Alice’s first time. They lived in a New York walk-up railroad apartment and shared the lone toilet off the hallway with the other inhabitants on that floor. And what about my grandmother’s first time, perhaps at the orphanage in Aleppo in the years after the Armenian genocide? Maybe it took years to recover from starvation, so it didn’t happen till she was older, on the boat to France perhaps. In 2009, I asked Alice, “What should we get for a treat?” “You got any ice cream?” A few months after Alice got her period for the first time again, she became completely incontinent. Depends™ didn’t solve this development. She made solo trips to the bathroom, saw there was no blood on the pad, and assumed her period was over. She pulled the absorbent section out, leaving only a thin fiber underpant between her and the sofa, chair, or rug. The day that Alice got her period for the first time again had begun like so many others: she was worried she had missed the school bus. “No school today,” I told her. “Are you sure?” “Yeah, you’re on vacation.” “Good! I needed a break from school.”

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Alice Mashoian Walrath June 1954

Alice’s mother, Oghidar (seated), with her brothers, sister-in-law, and niece, New York City ca. 1932

Alice and her older sister Rose New York City ca. 1934

Rose and Alice New York City ca. 1938

Alice and Dave with son Mark North Carolina 1958

Clever Alice kept getting pushed ahead by a half a grade in the New York City schools, so she was not even twelve when she started high school. These same smarts let Alice run circles around the first neuro-psych tests used to measure her dementia. Although she could no longer remember that she left something cooking on the stove, or how to pay her bills, her test scores were stellar. Her neurologist delayed prescribing medicines, while Alice developed a schoolgirl crush on him. Alice went to two grade schools: public school and Armenian school. It was there, at St. Gregory the Illuminator Church on 27th Street in Manhattan, that she learned to read and write Armenian, her first language. School taught the young Armenians to live by the lyrics they sang: “Yerkenk barenk miasin vor mer tseghe tarmanah— “We sing and dance together so our race can continue.” But Alice married an odar—a foreigner, a non-Armenian. She hardly spoke about Armenian school until Alzheimer’s brought her back to that time and place. I found a photocopy of Alice’s Armenian school photo tucked away among her disarrayed papers. There she is, the wiseacre with the pigtails, in the front row. And now I don’t have to just imagine her inner monologue. The day that Alice got her period for the first time again, she said, “The Armenian boys are too hairy. I would never kiss one of them.” Aliceheimer’s.

Alice and Dana 1961

Alice’s father, Yeghishe, with her daughter Suzy 1965

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Drink Me “I smell shoe polish,” my cousin Mary Ellen said as the flame of the candle on Aunt Sona’s breakfast nook table flickered in the stillness. It was 1970. We were holding a séance for our grandfather, Yeghishe Mashoian, Alice’s father. Yeghishe, named for the prophet Elijah, and Alice had a troubled relationship. His own father was a deacon in the Armenian Church. He had lost his sons to the genocide and Down syndrome. Alice felt his disappointment. Perhaps her rejection of church and most things Armenian—to become American—was a part of the rift. Yeghishe, a shoemaker, had a shop on Parsons Boulevard in Queens and lived with Aunt Rose and her family. He had never made shoes in the old country, home to the world’s oldest shoe, found in a cave, in a pink stone gorge dotted with doves. Despite Mary Ellen’s state of thrall, I didn’t smell shoe polish that day. At ten, I was the youngest in the room, and the most skeptical. I barely remembered Grandfather Yeghishe, who had died when I was five. Still, the smell of tanned leather, polish, and glue evokes the “idea” of him whenever I enter a shoe repair shop. It was time to fill in those ideas. With each passing day, Alice was becoming developmentally younger. Soon she might speak only her first language, as she did sometimes when she woke from a nap. How could I make the missing pieces of our past into more than ideas? Moving to Armenia as a Fulbright Scholar to gather the stories of elders in the ancestral homeland proved just the ticket. Every Sunday, little Alice had attended church in Manhattan, even singing with Rose in the choir as she got older. In Yerevan, I went each Sunday to Soorp Zoravor, a 17th-century gem nestled into a downtown courtyard. I joined the others—most of whom were over seventy—singing every word of the liturgy with the deacons and the choir, all in the midst of various social negotiations. We crowded the procession down the nave, to touch the banners, to be blessed by the Der Hayr, the priest, to slip our incense offering into the deacon’s sack. It wasn’t until I returned to New York that I felt Yeghishe’s presence. Alice sat beside me as I sang along at St. Gregory the Enlightener, the church closest to memory care. The procession was more staid, more American. No pushing, no crowding, no offering of incense. “She knows all the words,” Alice said, pointing me out to the man on her right. But then, Alice began to sing too. She rose and sat again, and made her way to the front of the church, and opened her mouth for the wine-soaked bread. After the service, the Der Hayr came over to chat with us, strangers to the congregation. “And who is this lovely person?” he asked Alice. “Aghavni,” she said. Dove, it was the name her father, Yeghishe, had given her. Aliceheimer’s.

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Curiouser and Curiouser “Incontinence might be a turning point,” Peter said. This was before Alice moved in with us. Alzheimer’s disease typically has a ten- to twenty-year course. We were trying to imagine the end point of our ability to cope at home. For a son-in-law and grandsons, three bathroom accidents could be about right. I had a different turning point. “If she gets mean,” I told Peter. I knew this side of her already. Sure enough, the adult diapers came long before the meanness. I remember only the very first accident, on my way out the door for some respite. It was so like a toddler, unnerved by mom’s departure, trying, without language, to express that emotion, to keep her home. After that, messes were a way of life and Alice was baby sweet. Surely toddlers evolved a keen cuteness for a reason. Toddler messes are big, their behavior challenging. The same was true for Alice. Adorable is adaptive, and Alice was adorable, ever full of compliments and excitement. For her, each moment was fresh and new. When she went for a walk with the dog, she collected bits of nature. “These are for you,” she said, handing me her treasures: wildflowers, fall leaves, an acorn. When I helped her in the bathroom, she asked me, “Do you do this for all your guests? It must be very hard to run a hotel.” But the biggest gift she gave me took place that first spring that she lived with us. We were driving along the same country road we took to get everywhere. “Where are we? How did I get here?” she asked. “You’re in Vermont. You moved in with us a while ago because you have Alzheimer’s disease, and it isn’t safe for you to live alone.” “You live here? It’s pretty.” Big stands of lilacs in full bloom surrounded the homes we passed, their scent filling the air. Cows and fresh young calves chomped the green grass down to tufts in fenced fields. Hay ripened in others. Alice put her hand on my shoulder. “Promise me you will do something else when it gets too hard.” I promised, wondering how we would ever recognize that moment. Alice made it easy. Since she no longer had the language capacity to express what she knew, she used action. She did it when I was out of the house. She hit Peter—her biggest competition for my attention—with a broom, and threw things at him. Instead of letting one of her grandsons help her with the diapers, she took them off and hid them in my workroom. I knew it wasn’t meanness. She was simply telling us it was time for something else. When I explained to her that she would be going to a school for people with Alzheimer’s disease, Alice relaxed and those behaviors evaporated. “Oh, good!” she said. “I love school.” Aliceheimer’s.

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A Mad Tea Party In 1977, I took an Aeroflot flight with Alice and Dave, my parents, and my younger sister from Beirut to Yerevan. The flight was filled with diasporan Armenians, most of them fleeing some sort of political upheaval in the lands to which they had fled during the genocide. Lebanon, Ethiopia, Iran. Throughout the flight, the engines roared as though they were somehow inside the cabin. Water dripped from the sloped ceiling. Massive Russian stewardesses (this was before the time of “flight attendants”) served coffee and tea and shouted at the passengers who wandered the cabin, lit cigarettes in hand, ignoring the seatbelt signs. We were going to meet Yeghishe’s sisters’ offspring. Yeghishe, Alice’s father, had seven sisters. During the genocide, they fled from their homes around Lake Van and landed in Yerevan, Armenia. Alice had more cousins in this tiny Soviet Republic than we had in America. As the peak of Mt. Ararat ascended toward us, everyone danced in the aisles for the homecoming. The lone Americans on this pre-glasnost flight, we were met at the airport by the official Intourist “guides” who supervised our visit and cousins Misak and Kevorg. They each lived in small one-bedroom apartments with their large families, the mattresses stacked in the bedroom during the day, laid out like cards at night. Still, each day we were there, Misak and Kevorg managed to find the means for a madagh, a requiem offering of a sacrificial lamb, blessed, boiled, then distributed to those in need, to honor Yeghishe’s memory. So shaken by the thought of her jagad a kir, her fate, literally written on her forehead, had she grown up inside the Soviet machine, Alice, the scientist, forgot basic biology. If her father had landed in Yerevan instead of New York, a different sperm and egg would have combined, and she would never have been. Nor would I. A week later, we left nearly everything we had in our suitcases behind with our relatives. Alice kept up with her cousins for a while. But one day, when a letter arrived from Misak, Alice tore it up, unread. “That’s enough. What do they want from me? I can’t solve their problems. They think we are millionaires just because we are Americans.” In August 2012, I landed in Yerevan for a longer visit. Once my language skills were good enough, I vowed to find the cousins. While I was there, I sat with my tea for a weekly Skype meeting with Alice. “Do you know where she is?” the kind caretaker would ask Alice, pointing to me on the screen. Alice shook her head no. “I’m in Armenia,” I always said. I added, “Should I look up the cousins?” “Of course,” she said. “It’s the right thing to do.” Aliceheimer’s.

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I’m Opening Up Like the Largest Telescope That Ever Was “This is Hempstead!” Alice said, as we drove east on one of Long Island’s main asphalt arteries. “You’re not taking me to see my sister, are you?” That hot July day could have been a beach day. But we were heading out for some old-fashioned ancestor worship. “No. We are going to visit your parents’ grave.” “That’s a terrible idea.” Alice hadn’t been to the grave since her mother died in 1954. Her father, Yeghishe, died in 1965, just as Alice moved to Brazil for the year, with three young children and her husband. She didn’t go back for the funeral. Yeghishe was Vanetsi, a person from around the licorice-flavored waters of Lake Van, a center of resistance during the genocide. Van’s Armenian inhabitants have all but vanished. In New York, Yeghishe married Oghidar and fathered three children: Rose, Alice, and Antranig, a son whose embryonic telomeres wrought an extra 21st chromosome. “This is Hempstead! You’re not taking me to see my sister, are you?” “No. She lives in Rockland County now. We visited her last year after Rose Mary died.” Rose Mary was Alice’s niece. They did not get along. “Rose Mary died?” Alice grinned. Rose Mary died young from one of those cancers linked with a gene. Some first cousins choose genetic testing after learning this information—for me, that’s a terrible idea, the scientific evidence too gray. “She died in June. After the visit, you said it was good to have a sister again.” “Really? I said that?” Alice shook her head. Somewhere along the way she lost hold of the principle that it was good to share the planet with someone who shared family memories and fifty percent of your genetic identity. In Armenia, people often referred to my “genetic memory,” as though I had a series of latent codons that could be expressed only in the homeland. Genetic memory let me learn dance steps. It accounted for my spiritual bent and helped me speak Armenian. “You’re Vanetsi? Me too! We’re family.” In this culture, blood counts, genes count, family counts. The first time I saw a model of DNA, its beautiful double helix shape twisting up from the lab table, I was lolling in the back of Alice’s classroom, too sick to attend my own school but too young to stay home alone. “DNA,” read the label. “It’s mine,” I thought, “I’m DaNA.” The axioms of biology pervaded my childhood home, but so did story. Here is mine: I won’t be getting tested for any genes associated with Alzheimer’s disease. I prefer the certainty of the stories that I have inherited. Inside Greenfield Cemetery, Hempstead, New York, we found the grave. We planted flowers beside the boxwood that Aunt Rose had placed in the earth so many years before. “We should visit my sister, don’t you think?” Alice said. “She lives right near here.” Aliceheimer’s.

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Who Are You? “It’s a good thing I ran into you in the parking lot,” Alice often said to me. “I don’t know what I would have done if I hadn’t!” Alice was relieved to be living with us. She just wasn’t sure who we were. Recognition. The public threshold. The first thing anybody asks me when they hear she is now in memory care: Does she still recognize you? Identity is the public side of self. Daughter, mother, anthropologist, wife—each of these prescribes a series of social behaviors that go with the role. Most folks think that if Alice doesn’t know us, the rules of care shift. As we charted our own version of Alzheimer’s care, I increasingly had the sense that, more than recognition of individuals and their social roles, it is recognition of intention and behavior that matters. Alice’s constant question, “Dana, are you my mother or my sister?” meant that, somewhere, she knew I was her daughter. Trusting me to help her, she conjured for me the role of a mother or a sister. That she knew these truths helped me know my deepest self. When Alice and I stayed in touch by Skype, Erika from memory care would set her iPad up as well as the computer, so Alice could type while we chatted, 2 pm New York time, 10 pm Yerevan time. From the windows of my apartment, I could look out to a brightly lit, massive statue of Mother Armenia, sword in hand, standing tall and proud with a colorful Ferris wheel at her right flank. Alice remained with me even when we weren’t on Skype, because now, thanks to Alice, I recognize myself. After a vibrant, dignified, eighty-something-year-old Armenian woman told me all about the many years her family spent in Siberia, she asked me about my mother. When I told her about memory care, she asked, “Where’s the hars?” This bride, or wife of someone’s son, has the role of caring for her husband’s parents. As a hars myself, I am relieved the whole job doesn’t fall to me. But I know that memory care is a function of American privilege. On Skype, sometimes Alice and I would sing together, or I would sing and she would type along, going back and forth, English to Armenian and back again. Me singing: Seerd oo hokis yaro jan, kezi hed goo kam—with my heart and soul, dearest, I come with you. Alice typing: Heart. Heart. Me typing (while singing): I like all these hearts. Alice typing: Heart and Soul. Anoush es. Dear John. Sir doo hokis yaro jan. . . Anoush es—you are sweet. I keep these words in case I ever need help remembering. Aliceheimer’s.

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Acknowledgments

This book began with a promise to my dear friend, Patty Hudak, a Beijing-based artist, to make and exchange (via email) a drawing a day. Patty also told me about the Brooklyn Art Library’s Sketchbook Project, a yearly project that connects artists from all over the world. My 2010 sketchbook, along with a 24 Hour Comics Challenge, organized by Vermont’s spectacular Center for Cartoon Studies, set me on my path. Thanks to Alec Longstreth and folks from Tree and Hill Comics, who led us through to a crisp October dawn, in the Montpelier library, back in 2010. I was fortunate to be pursuing an MFA in writing at the Vermont College of Fine Arts while Alice lived with us. Special thanks to Margaret Bechard, Uma Krishna­ swami and Tim Wynne-Jones, who embraced my first comics. Melissa Fisher, Louise Crowley, Sabrina Fadial, Tom Greene, Laura Kvasnosky, and Gary Moore embraced my teaching and visual sides and provided opportunities for me to introduce Aliceheimer’s to a wider audience. Many storytellers, graphic and otherwise, helped me tell this story better. Lee Ann Cox, Jennifer Gordon, Daphne Kalmar, Curtis Koren, Sarah Lamstein, Grace Per Lee, David Macaulay, Melissa Pasanen, and Tim Stout provided invaluable insights about how to tell this story and how to get it out there. SEABA and VCAM housed an early Aliceheimer’s installation, as did the Dianne Shullenberger gallery. Rebecca Cummins brought Aliceheimer’s to Montgomery’s​ Celebration of Expressive Arts. Janet Van Fleet and Sue Higby of Studio Place Arts integrated Aliceheimer’s into the Storytime show and introduced me to a vibrant arts community. Anthropologists Wendy Ashmore, Kim Gutschow, Adrie Kusserow, Emily Martin, Kate McCaffrey, and Juliet McMullin recognized that this work was anthropological long before I did. Ruth Behar, Melisa Cahnmann-Taylor, Kirin Narayan and Renato Rosaldo welcomed me into the literary ethnography fold. Caring for Alice required a community. Janet Herrero, Martha Whitney, and Polly Menendez, healers all, gave Alice space to be herself and to grow even through loss. Roger and Georgette Putzel held a film club in their home so Alice and I had a place to go each Monday night. They, like dear friends and members of the improvisational

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“Northern Vermont Anthropological Association,” Bill Mitchell, Rob and Rindi Gordon, Dave and JoAnn Bennett, Diane DeTerra, and Joseph Subasic, hosted Alice at many parties where she always felt like a queen. Molly Greece and Erika Likar from the Seabury at Fieldhome made Skyping possible at times when many miles separated me and Alice. Today Alice and I are blessed that she is back in Vermont and part of the Living Well community, residences that embody the same philosophy of care that we used when Alice lived with us. The Vermont Arts Council and the National Endowment for the Arts provided support while I worked on this book. The Fulbright Scholar Program was integral to this work, as it brought me and Aliceheimer’s to Armenia, where I met Levon Abrahamian, a wise trickster of an anthropologist and cartoonist who introduced me to the local comics community, including Tigran Mangasarian, Levon Gyulkasyan, Mkrtich Matevosyan, Armen Patvakanyan and Agata Badalyan. These meetings in turn led to my passage through the extraordinary doors opened to Armenian comics artists at Angoulême, France, thanks to the generosity of Jean Mardikian and Laurent Melikian. Among my Armenian comics friends I am especially grateful to gifted cartoonist, philosopher and designer Haroutiun Samuelian, a wise and far-seeing owl. Haroutiun also brought Aliceheimer’s into the Sunny Dragon, Yerevan’s First International Graphic Humor Festival. The Graphic Medicine community is my tribe. Special thanks to Ian Williams, MK Czerwiec, Michael Green, Susan Squier, Shelley Wall, Muna Al-Jawad, Lydia Gregg, and Juliet McMullin for spectacular annual Comics and Medicine conferences that have given me opportunities to connect, to grow my craft, to be inspired, and to find long-lost collage cousins such as Mita Mahato. Paul Gravett’s legendary generosity and knowledge helped me connect with comic artists and experts globally. Kendra Boileau and the editorial board of Penn State Press’s Graphic Medicine series help bring the healing power of comics out into the world. Thank you for the care you have brought to every step of our journey together. Julia Masnik, agent extraordinaire, thank you for believing in this book and for finding its perfect home with them. My dear sister Suzy was a partner in creating love and laughter as we care for our mother together. My sons, Nishan, Tavid and Aram, brought whimsy, generosity, and energy to taking care of Alice and their own parents. My husband, Peter Bingham, beyond weathering his mother-in-law, helped create the ease and magic that we knew while she lived with us.

MK Czerwiec, Ian Williams, Susan Merrill Squier, Michael J. Green, Kimberly R. Myers, and Scott T. Smith

“Peter Dunlap-Shohl is a Rock Star Artist and Humorist. Every disease like Parkinson’s should have someone like Peter Dunlap-Shohl, until there are no more diseases like Parkinson’s left.”

“It’s becoming clear that graphic narratives can deepen understanding, not only of facts but of feelings, between patients, families, and professionals. A spoonful of comics really does help the medicine go down.”

“Ian Williams is the best thing to happen to medicine since penicillin.” —Alison Bechdel, 2014 MacArthur Fellow

—Paul Gravett, author of Comics Art

My Degeneration A Journey Through Parkinson’s

—John Straley, author of Cold Storage, Alaska

“This original and devastating memoir of love and loss illustrates the value of hospice and presents caring for others as a sort of tragicomic ‘Olympic sport.’ Highly valuable for those facing illness in the family, caregivers, and anyone aspiring to live with empathy.” —Martha Cornog, Library Journal

Peter Dunlap-Shohl