Us Against Alzheimer's

by Marita Golden

  People with dementia get bored, and perhaps the greasy quality of time is part of the disease’s progression. Starting a task is hard; staying on a task is harder. I think of that dream, the one in which you have to leave the house by noon to get to the airport, and the clock reads 11:55, so you start cooking noodles and then suddenly remember you have to leave at noon but you get distracted before you reach the door. The emotion I feel in this dream is a frayed fretfulness, a sputtering inability to start. I slide across the crucial point of departure as though on a layer of invisible ice. People with dementia putter about in much the same way that you and I putter sometimes: sorting dresser drawers, emptying a purse, taking the linens off the bed. That it isn’t his dresser and she can’t remember how to put the linens back on is not a concern. The patient who was once a nurse tries to bathe her roommate; the onetime chef insists on cooking lunch. People yearn to be active. The worst quality of institutional life is the lack of things to do and the assumption that people don’t need things to do. They need to fold laundry, use tools, make art. They need a baby to rock and dishes to wash. These are not patronizing or fake activities. The baby may be a doll, but the caring is very real. It is part of the continuous making of the self, because a self is a thing with purpose.

  Mrs. S is in her late eighties. She used to be a store manager, and her arrogant dismissal of the other residents is breathtaking. As her dementia progresses, she has become ever more critical of her caregivers, who to her are clearly incompetent. When she scowls at me, pointing and demanding, “Why is that woman bothering me?” I can imagine the boss she used to be, the way her employees must have scurried when they heard that tone of voice. She is still busy, trying to get the trains to run on time. She harrumphs and rolls away from me. Terminated, with prejudice.

  Behavior always has meaning. Betty walks almost constantly in the hallways of the locked unit, walks to the door and presses her whole body flat against it for a moment, unmoving, then wanders on. Sometimes she picks up an item and carries it all day—a hairbrush, a houseplant. Now she goes into Frank’s room and begins to methodically take down the curtains. Thwarted in her momentum, Betty can get angry, so dealing with her requires a little delicacy.

  “Betty, hey!” I call out. She looks at me vaguely and turns back to the curtains. “Can I help you with that? Let’s go get a ladder.” She looks uncertain but finally drops the curtains and turns toward me. I take her hand. We stroll down the hall, the curtains already forgotten.

  Have I lied to her? It doesn’t feel that way. The medical and nursing communities use stigmatizing language: “wandering,” “elopement,” “feeder,” “aggression.” I am trying to meet her rather than overcome her. People with dementia have been tied down and given massive doses of major sedatives and tranquilizers, even electroconvulsive therapy, to control problem behaviors such as taking down curtains. We behave as we do to meet needs. I eat because I am hungry. I put on a sweater when I am cold. I will hit a stranger who tries to take my clothes off. (What we call aggression is often self-defense. A trainer for caregivers says that if a person is aggressive, “you’re the one who started it.”)

  A person who wanders, such as Betty, can be trying to get somewhere in particular; when she is a little amped up, as she gets sometimes—pushing on the locked door, banging on a window—she may be trying to go to work or pick up her kids after school. If Mr. Franklin refuses to eat in the dining room, he could be banished to a special table for people who need help with meals. But Mr. Franklin may have eaten alone all his adult life. Maybe Mr. Franklin thinks he is in a restaurant (many assisted living facilities go to some trouble to create this impression) and is afraid that he won’t be able to pay the bill. Figuring out why a person behaves as he does is not just part of my job. It’s what I do every day with each person I meet. It’s what I do with myself. Why did I say that, why did I do that when I know better? I don’t always know.

  * * *

  Time changes when the brain fails, becoming strange and plastic. This is time unmoored; a person drifts like an astronaut on galactic winds, encircling the perishable moment. One lets go of any insistence on the linear and apparent. The rate of speech slows down, eventually becoming so slow that it sounds like nonsense. (Recorded and sped up, though, the words may make sense.) At the same time, words take on new meanings and syntax changes. People often repeat themselves, reach for words, or use images. One woman would say “my butt is drunk” whenever her pants were soiled. All verbal sense eventually disappears, decaying into the jumble called word salad or into the frustrating silence of aphasia. Dementia gives us an opportunity to question how time and language and perception work. It strikes me that both artistic and religious practice have these qualities: new ways to use words, repetition, pauses and silences, gestures and images—expressions of the expansive interior longing to be heard.

  As dementia progresses, a person loses the ability to “update” her knowledge of herself. The self begins to stutter to a stop, to freeze. A person never stops changing, but a person with dementia is eventually unable to learn that he or she is changing. Our most vivid sense of ourselves is from adolescence to about thirty; this is called the reminiscence bump, and many people seem to freeze there. Only the most robust parts of the story remain. She is not your mother anymore, but forever a version of the mother you had. The story is told again and then again until it becomes a kind of fable: a story told only one way.

  The script is gone, patterns break, the long-danced dance is different now. When words fail, you rely on sight and touch. All the big and tiny slights of life are done. If you are comfortable with silence, you know that silence is a fertile thing. You let go of words, the exchange and chatter and demands, and rest. You pay close attention. Everything has changed; there is nothing to fear.

  In the final stages of dementia, the diminished brain no longer interacts with the world. Is coherent memory gone, or has the person simply folded in on it? We can’t know for sure, but the body forgets even its oldest habits. From a very young age, a person knows how to eat, to open the mouth, to chew, to swallow. A person with dementia will continue to eat for a long time, as he always has. Then perhaps he wants to eat at odd times or wants to eat the plastic flowers. Then he stops lifting the spoon but opens his mouth if you lift the spoon, and chews. Then he stops chewing and, finally, stops opening his mouth. Eating is no longer interesting, or it’s too complicated; even the act of swallowing is forgotten. In the same way, a person will walk all day long, never stopping for more than a few moments. Then she will walk part of the day, and then not much, and then not at all. Walking is too complicated; it has been forgotten. Dementia is invariably fatal, which is a puzzle to many family members. How can the loss of memory kill you? One forgets to do what keeps one alive. The immediate cause of death is usually related to malnutrition, the consequent failing immune system, and illnesses of immobility, such as pneumonia.

  Paul Broks describes living brains as “progenitors of infinite space,” universes unto themselves, and the dead brain as “a point at which the universe has collapsed.” But I sometimes think of dementia as the long way home. Most of us will die by degrees, and everything lost in dementia is in time lost to all of us. What I feel the most in the world of the demented is wholeness, the unknowable and almost overwhelming wholeness of a single human being. I touch this now and then as I do my errands, hurry off to work: every person I see is beyond measure. The tired woman on the bus, the intent young man riding his bicycle the wrong way up the road, the smiling neighbor nodding at me as her snuffling boxer pulls her down the steps. I walk down the hallways and watch people gently orbit one another: singularities. Patricia, her hair a careful riot of bobby pins. Albert, banging his walker. They are planetary, enormous.

  Betty is cheerful today. She agrees to sit beside me on a bench for a few minutes. She takes my hand, leans her head on my shoulder. She eats little now and is very thin; I can feel her hip bone against my thigh. All at once
she smiles and looks at me. “I have everything done!” she announces, great satisfaction on her face. “Everything done. It’s all going in the place that goes in the place for each.” Everything done, at last.

  What a wonder it all is, that we appear and abide and fade away and no one knows what follows.

  I WON’T FORGET YOU

  INTRODUCTION

  I won’t forget you when you can’t remember me.

  I will remember everything.

  I will remember for us both.

  I will remember who you were.

  I will remember who you have become and what that means for you.

  I will somehow forgive what I said I never would.

  I will remember to cry, deep and long and hard.

  I will remember to open the door to your world.

  I will remember to not ask “why” to just accept “why not?”

  I will remember that I can be angry, not at you, but the disease.

  I will remember to remember what you gave me, even if I can only see it now that you are “gone.”

  I will remember to let others help us. Help you. Help me.

  I will remember to look for and find my own private joy.

  I will remember that you have not forgotten the things that matter most.

  I will remember that you have not, cannot, and never will leave me.

  I will remember to see your face in mine.

  I won’t forget you when you can’t remember me.

  AUNT ADDIE

  MALAIKA ADERO

  Aunt Addie was already old when I was a young one, living in my grandparents’ home. She was a member of the first generation of my family born free, in 1884. Her father migrated to their Knoxville home from middle Tennessee where he was enslaved, before he enlisted in the Union Army in his early twenties at the start of the Civil War.

  Aunt Addie and her younger sister, Carrie, studied at Knoxville College, one of the many schools throughout the South founded at the end of Reconstruction for African Americans. Both girls were active in the African Methodist Episcopal Zion Church as missionaries. Carrie married a man who worked as a porter on the railroad, and Carrie, Addie, and Carrie’s husband lived together and shared in the care of their father as he grew older. Addie was a businesswoman who worked from home as a seamstress. She was known not only for her fine custom work but for her own designs, particularly dresses with handkerchief tip hemlines. But when I was a child, the family said that Aunt Addie had “lost her mind.” I know now that Aunt Addie suffered from a brain disease, and that disease was dementia.

  She lived an independent life well into her middle age, but life took its toll on her health. So, she lived in the extended family household of her nephew and his wife, where she had a room of her own where she mostly kept to herself, speaking rarely. She kept her own counsel, read the Bible and tended to the Biblical objects in her tiny room: a bottle of Holy Water, an olive branch. These were souvenirs brought to her from the Holy Land, Israel.

  I was the youngest—and arguably nosiest—member of the household, into everything and everybody but especially Aunt Addie. She was a great and compelling mystery to me. But she didn’t talk much. She came out with us to have her breakfast, which always began with a tea cup of hot sugar water that she’d sip on for the longest time. She ate regularly but in small portions. And seldom said more than a complete sentence.

  I watched her at the table, sipping sugar water. I watched how she ever so precisely folded laundry, smoothing the cloth with the flat of her hands, folding to 90-degree angles, flattening clothes and linens to stack neatly away until the cycle of use began again. Her skin hung from her bones like crushed velvet, wrung out while wet and left to dry without an iron. They said it was because she was once a stout woman who lost a lot of weight too fast. The irises of her eyes were ringed with a blue halo.

  She spoke with her eyes and gestures. So, despite her strangeness, I was never afraid of her. I’d be shooed away by grownups, mostly to save her from the aggravation of my mischief. But, sometimes she did have what we called spells.

  Aunt Addie would take off her clothes and replace them with strips of white cloth she collected. She’d tie them to her ankles and wrist. She’d come of out her room naked as the day she was born except for the white rags, and she’d run outside if not headed off at the door by my grandparents or some other adult. She didn’t appear as old and frail as she usually looked when she pushed against them, trying to break free.

  We didn’t have neighbors in those days. So, there were no concerns about privacy. But we did have a lake out back that she might slip into. We lived on the lakeshore of property where my grandfather worked—Eastern State Mental Hospital. Our family had a long history with this hospital, which we called “the Asylum.” My grandfather was a baker and butcher there, succeeding his father, who was a baker. My grandmother worked as a cook there as well, and later on with the patients. But Aunt Addie stayed home with us. Hospitals at the time did little to actually treat mental illness or diseases of the brain, and they were more like places to warehouse burdensome people. The science of the brain was still a young field.

  When I got old enough to ask what made Aunt Addie “crazy,” the answers did more to confuse me than to make the reasons clear. Grownups would mumble in response that she never married and how she was “too smart.” Aunt Addie, they told me, was a college grad who was always bragged about for the good grades she made in school. She had a man in her life once, but I was told “something happened.”

  Knowing what we know now, I believe that Aunt Addie likely had dementia brought on by aging. Back then, we believed it was something that some people got, others didn’t, and there was nothing to be done. My great-grandmother, Mama Allie, who also lived in this extended family household, worked puzzles, did needlework. She kept her mind and body as active as she could for as long as she could. I was her travelling partner on her many visits to family and friends in rural East Tennessee from the time I was a toddler until my early teens. She was my joy and I hers. But she developed dementia too. Her spells weren’t like Aunt Addie’s. But she did make a pile of clothes, including her daughter’s good winter coat, and set it on fire in the backyard. And I did find her on the front porch crying, she said, because she thought I was pregnant.

  Hearing this, I began to cry at the idea that she would even think that. I was an eleven-year-old virgin. I had not yet kissed a boy much less done the worst thing, in those days, that an unmarried girl could do: have a child. That shook me up as much as anything. When my grandmother realized what was going on, she offered words of reassurance to me and to her mama, Allie. A cycle of age-related dementia was beginning again.

  By the mid-1960s, Aunt Addie’s body weakened. She could no longer do anything for herself, so she was admitted to Eastern State. We had by then moved from the hospital grounds onto family land a short walk away. She was close, but so certainly away from us. My grandfather Lavon, her nephew, still worked there and could watch out for her on a daily basis. I was now a teenager, spending more time with my friends at school and home than with my elders. But I felt the growing distance between us all. And Aunt Addie was now like a phantom limb whose presence was felt even once she was gone.

  MY MOTHER’S MIRROR

  CATHY ALTER

  I was prowling the aisles of my favorite consignment shop in Georgetown when the assistant manager, a friend, pulled me aside. Using the kind of voice reserved for men who pull open their coats to reveal a collection of stolen watches pinned to the lining, my friend said, “I have something to show you in the back.”

  She disappeared through a side door and returned with a small garment bag, which she unzipped slowly, like a burlesque dancer’s slow reveal. “Tah-dah!” she said, as the garment bag fell to the ground.

  To say it was a leather jacket would be an absurd understatement. What appeared on the hanger was more like a piece of high art, perfectly shrunken, seamed and shaped, with gunmetal rhinest
ones encrusted down the placket. All the Anna Wintours in the world could not have conceived of something this tough, this delicate, this perfect. Stepping closer, I noticed the label: Givenchy. As in Hubert de, the monsieur who put the H in haute couture.

  “Is it a million dollars?” I asked, removing the jacket from its hanger and slipping it on. It certainly felt like a fortune, lined in silk and with sewing so fine it looked like China’s “forbidden stitch.”

  “It fits!” cheered my friend, clapping her hands together.

  “How much?” I asked, heading into the bathroom to look at myself in a mirror.

  “For you,” said my friend., “a hundred dollars.”

  A Givenchy for a Benjamin? I could definitely pull that off. I imagined all the places me and this jacket would go together, how transformed my life would be with this thing on my back, how velvet ropes would part, how photos would be taken, how autographs would be signed.

  And then I saw how I looked in the mirror. With my son Leo at home napping and on my husband’s watch, I had dashed off to the shop without showering or swapping my pull-on pajama bottoms for anything resembling real pants. My hair was a rat’s nest, my face an oil slick. And even though I was wearing this amazing Technicolor dreamcoat, it was merely paper on an old fish.

  I slunk out of the bathroom, bumping right into Alan, the store manager, who sized me up and down and delivered his verdict. “You need a better bra,” he said coolly. “And for God’s sake, put on some lipstick.”

  Handing the jacket back over to my friend, I didn’t hear his biting commentary. Instead I heard my mother’s, despite the fact that she hasn’t spoken a clear sentence in years. Across the miles, from DC to a nursing home in Connecticut, she still holds up the most powerful mirror, whether I choose to look in it or not.