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Miscellany — From the March 2018 issue

Out of Time

The un-becoming of self

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We all know dementia by now: the organ of the brain breaking down in substance and function much as a heart or liver does. By the time a person dies from complications of Alzheimer’s disease, his or her brain is significantly smaller than its normal size. There are several major variants of this process, and the disorder’s progress takes many forms: insidious, incremental, dramatic, fast, and slow. The biology of loss is complicated and not entirely predictable; but in every case, memory, language, and motor control eventually slip away until a person finally sinks into silence and immobility. One could write volumes on the meaning of this gradual dissolving of a person — mustn’t it mean something?

Photographs by Molly Lamb from the series Ghost Stepping © The artist. Courtesy Rick Wester Fine Art, New York City

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.

1 Names have been changed to protect privacy.

Here is Maria, who really shouldn’t be living alone anymore, not least because she will let anyone into her apartment.1 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.

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’s most recent essay for Harper’s Magazine, “Miracles and Wonders,” appeared in the November 2015 issue.

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