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“I Don’t Know Who I Am:” Observations from a New Jersey Nursing Home

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The years when my mother was stricken with dementia—my sister bore the agonizing learning, the burden, and the testament thrust upon the family. So I’ve never felt the bewilderment, stress and agony of supporting a beloved parent–she who had unfailingly represented strength and self-reliance– that strong, sharp-minded and nurturing woman transformed before our eyes into an exasperating, confused and needy child.

Inevitably however, each of us has to confront dementia– this now-routine feature of our human evolution. If we are not watching our own identity gradually fragment and escape our soul, then we witness it happening to a close relative or a beloved friend.

Yvonne is one of two dear companions on her way into this matrix.

Like many women and men afflicted by some form of dementia, Yvonne possesses some self-awareness of her haunted status with periods of corresponding lucidity. (Bursts of clarity by Alzheimer’s patients are perhaps most perceptively and tenderly documented by the neurologist and author Oliver Sacks www.oliversacks.com; in particular, look for The Man Who Mistook His Wife for A Hat and Musicophilia.)

I don’t know if she knows Sacks’ work, but Yvonne has decided she wants to help me, as a writer, record snatches of herself during this moment in her 91-year history. It helps me too: first it prepares me, if anything can, for my march towards this disease; second, Yvonne does this with her characteristic humor and also with uncanny perspicuity, e.g. “I don’t know who I am” (uttered after a troubling episode of daydreams). Thus, as if to escape her sadness and confusion, she welcomes my visits at Vintage Homes (not a completely fictional name), to report her observations– we can’t call it ‘progress’—to me.

On each occasion I hear Yvonne’s complaint about the morning singsong exercise underway down the hall. Why that annoys her so, I’m uncertain. She likes to sing. But if her neighbors are going to stammer out pre-war songs, she’d rather they be in French; that’s how she learned them when she lived in Dieppe during the war. “’Over here, over there!’ Oooo la la. They tell me these are turn-of-the-century songs. Which century? I ask.”

Well Yvonne, I know how much you like singing. You have friends here. Why not start your own sing-along?

“Yes, but to do that I first have to feel happy.” I know she’s purposefully sardonic and I have no rejoinder.

Yvonne is no activist or reformer. Besides her incessant yearning to go home (“This is a boot camp”), she tolerates her imprisonment here by studying those around her. In the weeks she has lived at Vintage, she’s developed a special compassion for the workers, especially younger staff.

“The workers here: they are young; they are cheerful. I speak in French sometimes with one boy– maybe he’s from Morocco. All of them seem so lively. Not that new girl, the tall one in red; she was fired. You see, she refused to do her job. I think she was right; because the man who she was in charge of dirtied his pants and she was supposed to wipe his bottom. She refused. C’est son droit. How can she be forced to do that? She has her dignity. Can you blame her? She refused and the head woman fired her. That’s her there by the door; yes, she’s still here because they took her back.

“These helpers are kind, so kind. I respect them. They have to wipe us; front and back too.

“You know there is one girl who goes into the bed with Dorothy, the woman in the room near mine. She cries and cries at bedtime, so the girl herself goes into the bed too, and she holds Dorothy until she’s asleep. Can you imagine? Si touchante.

“We are clean; everything’s clean. The place doesn’t smell; the windows are big. They’re locked, of course. Yes, it is a prison nonetheless. Sans aucun doute. Who are they fooling? No use telling them that I know.

“‘Oh, it’s not so bad.’ This is what visitors exclaim when they arrive from California to see their grandmother. ‘It’s not so bad’, you say? Well, of course. You don’t have to live here.

“What do they expect?  I think it’s the cloth napkins that really impress them. Clean napkins every meal–likely better than they have in their own home, after all.

“There’s one woman here who I would like to speak to. I think she’s lesbian. I hear she’s a professor of astronomy, something like that. Speak to her? Me? I don’t know what to say. Anyway, she never speaks. It’s clear she doesn’t want to talk to anyone. She just watches. No, I don’t want to talk with her.”

“I remember Bob sometimes.” (Bob was Yvonne’s son who died four years ago.) “And I don’t think he’d be happy, not at all, to see me here. He would never have allowed anyone to move me here.”

One day I arrived at noon and found Yvonne in the dining hall with the three women she shares the lunch table with. Elba insists I should have something to eat with them, assuring me visitors are permitted to join the lunch. So she orders soup for me. Elba and the others are reluctant to begin eating until I’m served, and it’s taking some time because the staff has to first attend to all the regulars. So Clara gives me her bowl, and then Yvonne, feeling badly because I’m her guest gives her soup to Clara. So the soup bowls somehow get shifted around the table. When the server arrives with my bowl she’s visibly upset to find me consuming my soup. She rushes away, returns with a tray and removes all the bowls, even mine. “No; no, every bowl of soup has specific medicine,” she whispers with less annoyance than I’d expect. Yvonne chuckles, “And they think we don’t know what’s going on.

“Yes”, Yvonne declares. “I have lots of time to watch others….

“They fall asleep. That’s what they do. Sleep is the best way to deal with this place.”

“I don’t want to be with people who are not in this life. Who wants to stay in a place where no one is alive?”

“Of course I want to go out. We are not permitted. And they insist I have to use my cane even here, indoors. They say ‘No. No. We have to watch you. We don’t want anything to happen to you Yvonne, do we.’

“What can happen to me? I can only die here, that’s all; that’s why I’m here and not in my home. Are they trying to make me live forever?”

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Barbara Nimri Aziz is a New York based anthropologist and journalist. Find her work at www.RadioTahrir.org. She was a longtime producer at Pacifica-WBAI Radio in NY.

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