My Mother’s Still Here: On Alzheimer’s Disease And Nursing Homes

We take the tiny miracles which are given us. We pack them carefully and we take them home with us. We keep them for the days when there will be no new memories left to gather and we will have to be content with what we have.

I make a mistake. I talk too fast, say too much, as I try to get my mother to go outside with the other residents. She sits, paralyzed, and then says what sounds like mumumumumumumumumu. There is an angry tone in her voice. I step back and laugh. Blablablablablablablablabla I say. I smile. She laughs. Then I am quiet. In a soft voice I say, “Mom, It’s a beautiful day, would you like to go outside?” She says yes.

This is a good day. A good visit. Despite at least a dozen years of deterioration, something of her is still left inside her mind, some part of the place where she still is, where her personality, her soul perhaps, everything, anything, resides, even covered as it is in tangles and prions.

Four months ago she was gone. She lost the ability to walk, to speak, to eat. She lay in bed sleeping for 10, 12 hours at a stretch, the covers up to her neck and hiding the fact that her arms were black and blue from restraints and the trauma of constant intravenous medicines. The family talked about where to sit shivah, burial plans, whether she wanted to be cremated. Then she woke up. On New Year’s Eve day we moved her to a nursing home where they promised to teach her how to feed herself.

This is the second nursing home. The building is more than a hundred years old, the elevator is terrifying, the steps are narrow and dangerous. But it doesn’t smell of old people and death, despite the fact that old people and death are its primary occupants. The nurses and staff are relentlessly cheerful and patient, so much so that they lift up my mood the moment I walk in, despite my cynicism, despite my pain, despite my own anger and sadness that this is what has become of my mother: this place, this disease, this ignominious end.

The first day my mother stared and stared at me until I realized I was chewing gum. I quickly threw it away. When I was a child if my mother caught me chewing gum she would walk up to me and hold out her hand and I would deposit the chewing gum directly from my mouth onto her palm. She said chewing gum made me look like a cow. I forgot.

My mother has always been sad. From the moment she was born her mother, my grandmother, claims she was different. Fragile. My aunt, her sister, tells me that everyone had to walk gingerly around my mother. She was prone to tantrums, intense melancholia. My mother’s own journals show a mind full of uncertainty and angst, the conviction that happiness was elusive, that love was impossible.

We did not know she was bipolar. She did not know she was bipolar. She was not medicated. And she drank. She had good weeks and bad. We never knew which on any given day. I thought that once she was diagnosed with Alzheimer’s, after some years of hiding the disease, she might have been more than ready to slip this mortal coil. But she has fought with a strength I did not even know she had, to stay in this life, no matter how diminished it and she are.

The second day I sit close to her and stroke her arm up and down. When I was a little girl, even when I was a much bigger girl, grown, if I sat next to her and held out my arm soft side up she would run her fingers up and down it for a very long time. It soothed me then, it soothes me now when my boyfriend does it on a long plane flight or a night in bed when my anxiety all but overcomes me. She seems to like my touch; perhaps something about it is familiar, perhaps she knows it is me. I hope that but I can’t be sure, I can never be sure because she doesn’t have enough words to tell me. But she has some words again. Four months ago I thought they were all gone.

I live nearly a thousand miles from her. But when she got sick she chose to stay where she was. So every three or four months, I fly up to see her for several days. I have a sister who lives closer and can see her every two weeks. Her own sister lives 20 minutes away, although she is nearly blind from macular degeneration and her husband has to drive her to see my mother. But my visits are endless days, hours with her, silent, where I have learned how to sit still and be mostly quiet.

A concert by Dave Brubeck is playing on the television. I look at the date and then check Google on my phone. As I thought, Brubeck died in 2012 and was playing up until he died a day before his 92nd birthday. I watch his characteristic open-mouth smile, the joy with which he plays. He was in his early 80s then, thin, white haired, but with all his talent intact. My mother has been gone since she was 76. Disappeared into the net of tangles and prions, the shrinking of her brain letting more and more memories go. I remind her we saw Brubeck together more than once. She runs her hands along the table in front of her as though she is playing some sort of instrument.

Pat, the activities director who is sitting with us and encouraging the women at the table to roll up bits of ribbons and trim, says, “Was your mother musical?” “Oh, yes,” I say. “She played the piano and had a terrific voice. And she was an actress.” There is no way for the women who bathe my mother and change her diaper, who wipe her shit and change her shirt when she spills her Ensure, who place a hand on her shoulder and get right up in her face to say “hello” in the morning, no way for them to know what my mother was, who she was, how beautiful and smart and troubled she was. They know a sad, thin woman with messy hair and bad clothes but still they seem to like her. It may be their job, but they do it gracefully.

On the third day we head out into what passes for a garden, a slate patio overlooking the city of Providence and, oddly, a graveyard. There was a graveyard across the street from her assisted living center where she lived for 10 years, the first seven in an apartment upstairs, the next three in a room on the locked memory ward. We could not take her back there when she could no longer speak or eat or walk after her week in the hospital. And when she partially recovered we could not bear to take her back to a place that would transport her to a hospital once again and where she would be strapped down and sedated and forced to get well.

The doctor at the nursing home and I had a long conversation: There will be only palliative measures from now on. Unless she breaks a major bone she will not be taken to the ER with pneumonia or flu or anything else. This is an issue. My mother never signed a DNR. In fact she signed the paper that says “by all means necessary.” My mother could not have known what would happen. Could she? Is the woman so unhappy with life really ready to stay in it by all means necessary? We didn’t talk then. We didn’t even know. Touchy subjects were not given purchase. In fact we all avoided her as much as we could.

This visit, this good visit, my mother stares at my face with an intense concentration. Her eyes soften. I say: “You know who I am, don’t you?” She nods. She does not say my name but she nods. She reaches out her hand and clasps mine and I move my thumb up and down her wrist. Yesterday I took her for a haircut. She hasn’t had a haircut in weeks. She would not agree to one. But she cannot agree to anything. Her fine gray hair which used to float around her head like a nimbus cloud now hangs lankly past her chin. I wheel her into the tiny room where the hairdresser stands and I tell my mother everything is fine, that I will be with her the whole time. I tell them to cut it short, very short, maybe too short because suddenly a bald spot shows on top, one I had not noticed. When I look at her short, wet, thin hair plastered around her scalp I want to cry.

A woman named Maria sits next to us as my mother doesn’t wind up ribbons and trim and Maria doesn’t do it either. Maria won’t speak; her face contorts and as she sits her expression grows more severe. Then in walks a man who must be her husband. He is old like her and moves slowly, but he is all there and trim and energetic and he sits down and he takes one of Maria’s hands in his and he begins to talk to her in Portuguese and Maria smiles and answers him back. Why has Maria forgotten her English but remembers her Portuguese? Later in the dining room I watch him feed her, mouthful by mouthful, while my mother picks up her Ensure and her tomato soup in a cup and even the spoon full of ice cream by herself. Four months ago she was starving to death. On the second day, at lunch, I nearly drop her ice cream. My mother says ‘Be careful.”

We take the tiny miracles which are given us. We pack them carefully and we take them home with us. We keep them for the days when there will be no new memories left to gather and we will have to be content with what we have.

Lisa Solod’s “Black Boots for the End of the World” was an Honorable Mention in Best American Essays 2013. Her essays, journalism and short fiction have been published in numerous literary magazines, journals and newspapers including The International Herald Tribune, the Boston Globe, Boston Magazine, and Brain, Child. Two of her novels have been shortlisted for major novel prizes. She contributes regularly to The Broad Side.

Related Links: