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“It’s not Alzheimer’s,” I told her. Her doctor didn’t think so then, and neither — marveling at her Scrabble moves — did I. A 2011 study that suggested that Alzheimer’s was wrongly diagnosed 50% of the time had yet to be released, but I was already becoming wary of misdiagnosis and its nefarious effects on self-esteem and social relations. “You’re over 90, after all,” I told her. “Old age is a factor.” Sometimes she was saddened by thinking, “My memory is an abyss.” Other times she said serenely, “My memory is my worst enemy and my best friend.”
She seemed less frightened than I was. Listening to her, even when she gossiped or sang “Avanti Popolo,” I felt angry at first, exhausted by the steepness of my learning curve. I had put my book on hold, with some bitterness. But for my own sake, I started reading brilliant gerontologists who work with the memory-impaired. They made sense. Tom Kitwood, in “Dementia Reconsidered: The Person Comes First” convinced me that I was right to overcome my anger and focus on her strengths. My mother, too, was a self — living, often contentedly, on islands of land in the abyss.
I made a decision to live with her on those islands. I kept in mind the line from Mozart’s “Magic Flute”: “Love leads back to duty.” Whatever conversational scrap I offered, she responded to with pleasant sentences. I started retelling the stories she was forgetting. “When you were 6, you told me, your mother made you a potato latke and covered it with sugar, and you ate it sitting in the window, so everyone in the street could see you eat it.” We both enjoyed that story, many times. I lost my fear — developed in adolescence — of hearing myself repeat things.
I developed new views of memory loss from going through my mother’s experience empathetically. Forgetfulness seemed to make her more quotable. Once I asked her what wisdom was and she answered unhesitatingly: “The greatest part of wisdom is kindness.” Many people still don’t recognize how much of the mind is left as memories depart. When people with cognitive or other impairments have appreciative listeners, what they can access improves. Sadly, I did not observe, on the part of most of the nurses, doctors and social workers we eventually encountered, any attempt to attend to the qualities and powers that remained.
My mother stayed in her assisted-living apartment and paid to have aides more hours of the day. It occurred to me that if I wrote up her biography, the aides would know what to talk to her about, aside from their own lives. I knew her bio well: Brooklyn College B.A., Bank Street M.A. Gifted school teacher. She met my father at a family wedding where he was, for the only time in his life, drunk. When my father contracted Lou Gehrig’s disease, she cared for him at home, as he wished. After retirement, she ran a non-profit cultural organization for the Brandeis Women’s Committee. She fell in love at age 77. I described her values as a feminist, unionist and socialist as well as her preferences in clothes, food, music and activities.
The aides could read back to her portions of her useful and loving life, including excerpts from the chapters in my books where she figured as a model, and restore her selfhood when she felt it had abandoned her. When hospice aides eventually came to the apartment, I made sure they too read the short bio: Conversation was part of their job description.
As she weakened, I asked the aides to start a second log — not for meds, but for recording her witticisms, songs and the advice she gave them. I later jettisoned the medical logs. But these other logs I save, because they confirm how much she remained Betty Morganroth deep into cognitive impairment and weakness
We all want to play our parts in the conversation as long as we can before the final silence. But in the last months, the conversational style that suited my mother had to change. It had no low notes about the struggling economy and omitted sad family news. But it had warm silences, singing, joking and teasing. Until four days before she died, I could count on her for repartee. Since she was free of pain, I often asked, “How do you feel, Mum?” so she could answer, in her tender, reassuring way, “Perfectly well, baby.” She was teaching me how to be, as always.
Margaret Morganroth Gullette is the author of “Agewise: Fighting the New Ageism in America,” winner of a 2012 Eric Hoffer Award. Gullette is a resident scholar at the Women’s Studies Research Center at Brandeis University.