I am used to the cuckoo’s-nest world of locked memory-care units, to looping, opaque conversations. I work as a visiting nurse for a palliative care agency; the majority of our clients have dementia and live with family, or in assisted living facilities or nursing homes. The world that I see is far more nuanced than the commentary surrounding it: there is grace here, rare intimacy, moments of startling clarity—and, yes, happiness. If slowly disappearing is a disaster, is the abrupt tsunami better? The stark fact is that dementia is incurable, progressive, and fatal, but here is the surprise: in the company of the demented, one finds peace and unquestioned love in at least as much measure as in the rest of the world. I watch my clients navigate each day’s puzzling details. I know their efforts may look to many observers like an embarrassment of loss. I see the riches: the brave, vulnerable, completely human work of figuring things out. People with dementia sometimes have a rare entrancement with their surroundings, a simplicity of perception, a sense of wonder. Being with a person who has dementia is not that different from being with a person who doesn’t share your language. It is a little like talking to someone who has lost her tongue and cannot speak, has lost his hands and cannot write. This is not a bad thing; it is just a different thing. It requires a different kind of attention.
Here is Maria, who really shouldn’t be living alone anymore, not least because she will let anyone into her apartment. [Names have been changed to protect privacy.] The hot meals delivered every day pile up until one or the other of her caregivers throws them out. Here is Joe, who never speaks more than a word or two and watches the world from under hooded, skeptical eyes. Here is Ann, who has a strange gastrointestinal disease, the kind of bodily disruption that would make many of us collapse. Ann does not seem to notice. She scoots her wheelchair about the hallways all day long, talking to passersby, nurses, posters on the wall, plants, and herself with an equal degree of cheer.
Here is Mattie. She has vascular dementia, which can manifest in a dizzying number of ways, depending on where in the brain the damage is—lost executive function, an inability to speak, personality changes, incontinence. Mattie is a petite woman with thick eyeglasses. She is very thin and sleeps a lot, often with her legs spilling off the bed in a sprawl, as though she has fallen there. She loves her husband (who visits every day), her dog (who died some time ago, but she has forgotten that), and milkshakes, her main source of nourishment.
“How are you doing today?” I ask her. She blinks at me. “They take me, take, take me away, and that takes my sleep away,” she says. “To where the vacuum is.” We walk hand in hand, Mattie moving with the delicate care of the invalid because she has trouble with her balance now, to look at the roses in the garden. She tells me about the roses she used to raise—not, that is, in so many words but in small gestures and slow, stumbling sounds. She grew roses or loved roses or loves these roses, or these roses remind her of something she loves. The difference between the possibilities is not important anymore. I lead her slowly back up the ramp into the living room. She pauses a long time—there are many pauses in the company of the demented—and then notices herself in a mirror: “There she is in that place, and she can’t get out.” She turns and smiles at me and looks away. She is done talking.
Albert looks for his wife. He is always looking for his wife. He staggers into the hallway without his walker for the third time in an hour. He is led to a chair, another fall averted, and the aide brings his walker and tells him that his wife will be arriving soon. He sits in the dining room, banging his walker on the floor like a prisoner banging his tin cup on the communal dining table. “Where’s my wife? I want my wife!” She is coming, I tell him, and he calms down. He is always looking, and she is always coming. I am a witness to Albert’s now, the now in which he is looking for his wife and sometimes finds her, and it is unwound into strands that we can (almost) name yet has all the quality of the now each of us cherishes.
* * *
The philosopher Daniel Dennett calls the self a bowerbird: “It appropriates many found objects which happen to delight it.” Out of its vast collection of stuff, the brain builds the self an autobiography, what Dennett calls a “center of narrative gravity.” Is consciousness a story? Is it story, author, and reader as one? Memory is pocked with gaps at best, prone to falsehood and suggestion; the story changes over time. Is the self like vision? I see only phantoms: my eyes move in tiny jumps called saccades. My visual cortex draws conclusions about what I am seeing, adding context and experience to create a smooth snapshot. I am seeing a tree, a dog, you—but not exactly the tree, the dog, or you. Perhaps consciousness is like this, a construct of countless saccadic encounters. We each make of this center of gravity what we will: a pearl of soul, a loosely cohered braid of experience, a voice talking to itself in emptiness. To consider what happens to a person with dementia requires me to consider this bowerbird self, the bounds and limits of all that I consider myself to be. Because the center cannot hold.
When I look at my son, who is almost forty, I sometimes think, “He’s not my baby anymore.” My son does not ever think this way. Children are expected to become altogether new; parents are not supposed to change. I watch a man watch his mother. She follows the other residents all day long. She is trying to help them, to feed and dress them, push their wheelchairs, put them to bed. She was a homemaker, and now she is doing for others what she did for her son. Sometimes she cries in frustration; her charges are obstinate and resist her care. To her son, the woman is not his mother anymore. It is as though she died and yet remains.
The people closest are always comparing now to then, the way she is now to the way she used to be. When we say She’s not my mother anymore, we mean she is not the mother she used to be, the mother we remember. One of the mysteries of self (besides the fact that it can’t be located) is that the self is at once both changing and stable. We are descendants of our past selves. I am not the child I was, or even the woman I was a few months ago, but close enough. A hidden through-line pulls us along, my me-ness changing slowly enough that I always seem to be me. Significant brain damage (as with dementia) can leave the personality almost untouched for a long time. When I hear the reaction of the woman’s son (and I hear it often enough), I am reminded of this way in which life is a story. I may not be the same from year to year, but I expect you to be. My autobiography includes you as a character, fixed into a particular part of the story. She was never just his mother, but he’s not in the best position to see that. He thinks she has died because she forgot him. She left his story.
The fact that my own me-ness persists is obvious, and yet a persistence of identity is one of the last things we expect with the demented. They seem different to us; mustn’t they be different to themselves? The spate of recent research considering how a person with dementia actually feels tells us no, not really. People know they have a memory impairment, but they feel themselves to be the same person, even in late stages of the disease: “I’m like a slow-motion version of my old self,” says someone with dementia. The possibility of pleasure, let alone contentment, for this person is barely acknowledged. A team of researchers called our current vision of dementia the tragedy discourse. Another group notes that most researchers have shown “a stark disinterest in happiness,” and their assumption of distress is because that is “the only available lexicon for experience, the only available lens through which dementia is viewed.” Surveys have found that Alzheimer’s disease, the most common form of dementia, and cancer are the diseases that people fear the most. The communal response to dementia seems to invite only existential despair.
When Mattie looks in the mirror, what does she see? Is she commenting in symbolic language about herself, is she able to consider herself only as a character in the story, or does she see a woman behind glass? The neuropsychologist Paul Broks (who reminds us that “the degradation of personality is a neurological commonplace”) believes that people retain a nuanced sense of self even with significant brain damag
e. We mistake the inability of the self to speak of itself for the absence of the self. When I walk with Mattie, when I chat with Ann, when I calm Albert down because he can’t find his wife, I can only guess what the world looks like—what I look like—to them, who I represent, what I mean in their experience. By any objective measure, Mattie is enjoying the garden and Ann is laughing, and even Albert relaxes when I bring him a cup of coffee. Paul Broks, musing about the enigma of selfhood, writes, “The quality—the feel—of our experiences remains forever private. . . . I can’t see a way round this. Privateness is a fundamental constituent of consciousness.” I can project my anxiety about my own threatened self on them, or I can see what’s in front of me and bow to all that can’t be known.
* * *
Perhaps dementia has always been with us in one form or another, and perhaps it always will be—an entropic response. People have tried just about anything they can get their hands on to stop it: blood transfusions, digitalis, thyroid treatments, nicotinic acid, massive doses of vitamins, hormones. Papaverine, a nonnarcotic derivative of opium, has had many proponents. A variety of placental, embryonic, and amniotic extracts, heated seawater, lecithin, naloxone, chelation therapy. The list has a hollow bravado, the names like bycatch in a vast net: coca, amphetamines, heparin, iodine, bircher muesli, royal jelly, hyperbaric oxygen. Intravenous injections of procaine hydrochloride, commonly known as novocaine, were used for a long time. Ergot, a fungus, has its fans; a form of it is still widely used in Europe. Today, a few medications based on acetylcholine can slow the progress of Alzheimer’s disease and improve so-called problem behavior for a while; the mild improvements are usually not seen for months and are not enduring. Last year, both Merck and Eli Lilly stopped large experimental studies when the drugs did not prove effective.
The enormously costly body of research concerned with dementia is focused first on cure and prevention and then on how best to “manage symptoms.” The existential experience of dementia is almost completely ignored; vanishingly few studies have considered what it is like to be demented. The distress with which dementia is viewed creates its own bitter distress. By the time of diagnosis, most people know something is wrong, and many know what is wrong long before they say the words. People in the early stages of dementia speak of “coming out,” with all the fear that phrase entails. Others lie, knowing how the diagnosis will change the behavior of those around them. Dementia can be a black hole into which all of a person’s power disappears: he becomes an object to be talked about by others, spared—or deprived of—life’s countless choices.
Yet people with Alzheimer’s consistently rate their quality of life higher than their family members do. In a large international study, people with cognitive impairments were no less happy than healthy people. When family members are upset about a relative’s decline, certain it is a terrible experience, they are not always clear about who is suffering. My friend Kate’s mother had Alzheimer’s. She had always worn careful makeup, and she was uncomfortable leaving the house without it. But her makeup became exaggerated, almost clownish, and she refused Kate’s help. Looking in the mirror, she liked what she saw. Going out to a restaurant became, for Kate, “an exercise in my own discomfort, being willing to let her be as she was.”
* * *
I am testing Dorothy, who has moderate dementia. She is still able to walk and to help with what are called the activities of daily life, such as dressing and bathing. I give her a SLUMS (St. Louis University Mental Status) examination, a common tool for gauging the degree of impairment. She does not know the day of the week or the year, but she can do three-column subtraction correctly. She cannot remember a list of five objects or even that I asked her to remember a list. When I have her draw a clock face with a particular time, she neatly puts the numerals in reverse order and flips the hands. She cannot distinguish a triangle from a square or a circle. She remembers no details from a brief story I tell. When I ask her to name as many animals as she can in one minute, she quickly begins, only to stop repeatedly and discuss them: “Giraffe—they just run around, don’t they? Chicken—I guess chickens are animals. Pigs! We had a farm and I liked the pigs!” Dorothy’s final score is 5 points out of 30. (My score, and likely yours, would be 30.)
After the test, I asked Dorothy how she was feeling, and she said, laughing, “I feel very good all the time, oh boy!” I can see the reader shaking her head and saying, “But that’s the disease talking.” Perhaps. Perhaps the changes in mood that occur with dementia are a result of the physical changes in the brain. In time, many emotions are blunted. A family member worries about how to tell her relative the news of her diagnosis only to find that the patient accepts it with little emotion. The disease dulls knowledge of the disease. Sometimes people with dementia develop depression and anxiety; others forget to be depressed and anxious, forget to be sad. Another friend dreaded the task of cleaning out her father’s enormous storage unit, used as she was to his intense attachment to his possessions, remembering his anger at having to give up his apartment. But when the time came, his emotional connection to everything he owned had faded. A book had become just a book, a cup just a cup, and no longer the repository of past regrets and plans. He likes his new room just fine.
* * *
Mind is only part of what we are; we are also shapes inhabiting space. A good deal of my life is spent below conscious thought. I wash the dishes more or less the same way every time while thinking of many other things or nothing in particular. This is what we might call the felt self, the familiar patterns of the body, the home inside the skin—a literal skeleton in which habits and memories reside. Even after a person can’t speak, she can understand body language, tone of voice, facial expression. When the words a person speaks are nonsense, they may still retain the rhythm of speech, and you can sometimes figure out their meaning just by listening to the cadence and the tone. Even when a person cannot speak at all, he will still shake hands. We can’t really parse this rich matrix, except to note that losing one’s mind is not exactly losing one’s self. Glen Campbell still was able to perform after he was unable to get dressed alone. Which of those acts was more his?
Reality reorientation therapy was all the rage for many years, though it was exquisitely frustrating for everyone concerned: the continual correction of a person’s misperceptions and forgetfulness, as though the shrunken, tangled brain could relearn the details of the here and now. As this type of therapy lost favor, caregivers began to adopt the Best Friends™ Approach, in which one is supposed to use “the language of friendship” rather than a professional tone, as though one has known the person for a long time. This works with Betty; I jolly her along. She has Lewy body dementia, which causes hallucinations and Parkinson’s-like motor problems, and she responds to this approach. I am always bright and friendly with Betty. “How are you?” I say, leaning in. “I just dropped in to visit.” But I would get nowhere doing this with Mr. Franklin; he is offended by the offhand manner of the staff, as I am sure he has been offended by familiarity most of his adult life.
My mother-in-law, Phyllis, was a masterful knitter. She gave each of us a perfect sweater every Christmas. But one year, only a single sweater arrived: a Frankenstein’s mess of different yarns, one long and one short sleeve, speckled with dropped stitches. She kept knitting for a while, and then she just liked to touch the yarn. The policeman walks his beat up the hall, down the hall, back again. The singer sings. John prays: “He ascended into Heaven and is seated at the righthand oftheFather he will comeagain to judge theliving and the deadIbelieve in the HolySpirittheholyCatholicChurch the communion of saintstheforgiveness of sins the resurrectionof the body and the life everlastingAmen.”
Sometimes people with dementia seem to become their own opposite. Phyllis was a proper Presbyterian housewife who volunteered at the hospital, but she started lifting up her shirt in public and cursing at us. She hid money in the oven, and in the last months of her life would lie on the floor, arms outstre
tched, talking loudly. To her family, she seemed to be a different person—not our mother anymore. But I had known her only as an adult; I’d seen her sharp edges in a way her children could not. When the skein of the past unravels, so does repression. The housewife lets the world finally hear the complaints she has been mumbling to herself all along. The stoic man confesses his love. Our deepest needs, the habits of the secret heart, stay with us the longest.
I am never jolly with Patricia, who is serious and formal. She dresses carefully, washes out her stockings every evening, and pins up her hair. Patricia has Alzheimer’s. We think of Alzheimer’s as memory loss, but it also affects visual-spatial perception, making it difficult to recognize objects, and destroys executive function—the group of skills that allow us to organize and plan, solve problems, and make judgments. In later stages, it impairs language, behavior, and motor control. Patricia does not like to be touched, in spite of her growing dishevelment. She wears the same dress every day now, and her dirty hair is a nest of bobby pins. She carries a doll that is completely alive to her; it provides her with companionship and guidance. I always greet the doll by name and ask after his health. If you want to get anywhere with Patricia, you have to get the doll on your side.
Patricia’s refusal to bathe is what we tend to call problem behavior. Hygiene is a good thing all around, but often what we call a problem means a problem for the rest of us. One can be diagnosed with Alzheimer’s disease or vascular dementia; one can also be diagnosed with Alzheimer’s dementia with behavioral disturbance, vascular dementia with delusions, and so on. An early symptom of Alzheimer’s is abulia, which means a decline in initiative, a dulling of motivation and will.
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