Hope Is Our Means - A Story About Alzheimer's Disease
At Markfield, a home for people with Alzheimer's disease in the suburbs of Denver, there is a big dry-erase board in the kitchen that announces the date. This means little to the men and women who live here, as they have forgotten most everything – the names of their children, who is president and what direction is west.
Today's Post reads the same as a paper from twenty-five years ago.Every morning and meal is as the first time. It could be Tuesday all week. I work twenty-four hour shifts at homes like this several times a month. The houses are clean and carpeted with matted floral prints on the walls and plastic covers under the upholstery. There are locks on every cabinet, window and door. Most of the women who work this job are poor. They take the bus to this safe neighborhood with its ChemLawns. They can use the washer and dryer; the heat is paid; the pantry is stocked. Like Motel 6, there is cable-TV.
The men and women who live here are in the last stages of dementia. They are bathed and clothed and cared for. I give foot rubs – and read poetry aloud. I drug them every few hours, and make sure their toenails are trimmed. They come here to die. “If someone shuffles on to glory while you're working," my boss tells me, "do not call 911; loose the ties, they are ready to go." For men and women with Alzheimer's, time is all day and night, light and dark. They "sundown" on dreary days, lying in bed, stiff and faraway; they stay up, agitated, when the lights are left on at night. Their waking hours are punctuated by necessity – to eat and bathe, be touched and toilet. They are, in many ways, like children. But they are still hemmed in by an adult's sense of modesty and anxiety. Unlike toddlers, they can't get up after they fall.
Their old bodies are frail. The men begin to look more like women and the women like men. She has hairs at her chin; his square jaw grows round. Her dry breasts hang low and flat; his chest is soft and fleshy. Ears and noses are floppy and exaggerated. Faces are a map: lines where you squinted at the sun, worried, laughed. Bodies tell a story: The star-shaped scar of a mastectomy, the old calluses from old work.
We fill the house with cheer, real and manufactured. Something involving cinnamon and butter is always baking. Glenn Miller is on the radio; "South Pacific" is in technicolor on the TV. At its worst; this is death's propaganda. At its best, this is an invitation to a place past, a place where these "clients" were young and strong and sure. We make a casserole. We make small talk. "Virginia~ what do you like best about yourself?" I ask. "You haven’t got any way of putting a circle around the whole thing,'' she says, "My grandfather, he's the one I love the most. He's right here – [and you follow her eyes across the room to where, no doubt; she sees the man] be careful!" "Where are you from, Elizabeth?" "I don't have any," she says, hand to head. "What religion are you?" "My name is Mary Elizabeth." "Do you have children?" "I don't think so." But, that night, Elizabeth cries and cries, asking for her son, calling his name, saying, in between sobs that she was not a good mother.
The knowledge these men and women retain is beyond words. Alzheimer’s creeps up slowly – in forgotten names, unfocused eyes, a slowness, a sadness – until one day the "globe" of your brain – the shallow, gray canyon land of the cerebral cortex – is eroded and gone. Your arteries are hard; your thoughts soft. There is air between your skull and its contents. You didn't want this. No one does.
But what minds forget, bodies still know. Elizabeth knows in her bones that she birthed and nursed a child. Norma's nimble hands recall that she was once a fine seamstress. Now her pink sweatshirt is slack around the waist, so she gathers the loose cloth between her fingers, makes a series of perfect pleats, picks up an invisible needle and thread and begins to sew. Everett does not recognize his reflection in the mirror but knows it is his duty to empty the kitchen trash. He ties the bag neatly and places it beside a juniper in the back yard. At dinner, everyone puts their napkins in their lap and says thank you. They push in their chairs when they get up to leave and get lost looking for the living room. They show exquisite courtesy to each other, and to God.
Catherine is Episcopalian. When I put her to bed, we pray the “Our Father;" I say the words; she closes her eyes, clasps her hands and moves her silent mouth in time. Her tongue is tangled, she has lost her words, but she remembers their cadence and the posture of praise. These old folks prove the liturgist's thesis (and, for that matter, the drill sergeant's): You become what you do. We are shaped from the outside in. So we bathe stinking bodies, when we only want to turn away. So we do the Works of Mercy, we bend and we kneel, even when our head is clouded and our spirit is grudging. We light candles and sing "O Radiant Light, O Sun Divine," even when the world seems dark. We sit in front of computer screens, never break a sweat and forget that we are creatures and, as such, we have hair in awkward, places, we bleed and sneeze and get lumpy around the middle. We have bowels, and dandruff, and we are all going to die. It's easy to forget that we will turn to dust when we keep the oldest among us in nursing homes and "assisted living" towers.
The cause of life – to protect all human life at peril of our own has accepted the terms of an argument it cannot win. This argument is born of a utilitarian ethic that assigns worth to humans as long as they are producers or consumers. When they are not useful – wasting away with age, chronically psychotic, when their quality of life is questioned, – they slow us down. When they do not look like humans are supposed to look – too withered, too worn – we must dress them up. It is an unbalanced ethic, allowing us to forget that it is as much a grace to be needed as it is to be in need.
The faithful must answer such sentimentality and bumper sticker debates with a way so old that it seems new. This is not an easy time to say that killing – all killing – is wrong. But it must be said, again and again and again. And, when it cannot be said – when the maze of our minds and the fear in our bones overwhelms us – then we must wake and wash and dress in a seamless garment, the garment that centuries of the faithful have sewn for us. Let its shape dictate our movements, as we become what we do.
Men and women in the last stages of Alzheimer's are a good first principle in crafting a new language with which to discuss the sanctity of life. They are, simply put, useless. They have warped Kant’s a priori coordinates of time and space. They may require oxygen and they always need a nanny. They are "useless eaters," as an earlier generation would have said, as a society that places the highest value on production does say. They cannot wash themselves, they cannot get their pants on or their shoes off. They are incontinent. They wander. They cry. They are not even of use to their families, they are only heartache when they forget names, ask a beloved daughter, "Who are you?" Infants may be adopted, and they will always adapt somehow. Inmates may be reformed and, if not, there are always license plates to make. They are promising, they are useful. The men and women at Markfield House can only wait. They wait for God and for death; true-birth. They wrestle with fear – "Is my mother coming?" "Will you sleep by me tonight?" They feed on fleeting pleasures – canned peaches, a friendly lapdog – and hope.Our hope comes from the good news that we are not sovereign, we are not kings. So we do not defend a human life because it is particularly comely or talented or promising or fine of form. We defend life because we are all creatures and, as such, life is not ours to take. If we hope, we can say that there are worse things than death. This changes everything – the terms of the argument, the practice that is our life, the wonder infused in each least growing thing. It frees us from the paradox of working for peace through war, working for life through killing.
Hope is our means and our end; our air, our bread, our breath. The work of being alive becomes holy, the work of dying, too.
We do not know how to cure, but our hands can be healing. We do not know how to die, but we can learn through wise and lively living. If we keep the practice of praise and of hope, then, even when we are out of our minds, it will be in our bones. We come into the world naked and unknowing and, if we live long enough, we’ll leave that way, too. We are ridiculous and lovely, of the divine and of the dust.
I will not call 911 when someone at Markfield dies. In the meantime, I am graced to sit at table with them. Broken, we come to the table. Distilled to an essence, all they are is all that any of us are: utterly dependent. Our breath is not our own. They remind us of a God Whose ascent was a descent; to dirt and sweat, rough hands and crumbling bones. Of a God Whose failure was triumph; that, by lowering ourselves, we will rise.
They remind us that we are to be anchored right here, in the beating heart of the heartbroken world. But that some morning we must wake ready, too, to loose the ties, be light and ready to go.
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