When my mother started to lose memories in her 90s, she moved into a residential community near me, in Cambridge, Mass.
I had been a cultural critic of age in America, an “age critic,” for decades. But the focus in my books — beginning with “Safe at Last in the Middle Years” — had been on midlife. I was working toward a new book, eventually to be called “Agewise,” about how and why ageism was growing worse in the United States, even targeting the baby boomers, none of whom were yet 65. I was not anticipating writing about my mother in this book, although she had played major roles in earlier books. Nor was I planning to have a chapter on memory loss in “Agewise.”
What changed me, both as a daughter and as a writer? I found first that I had a lot to learn from my indomitable mother about living well with mental impairment and, later, with physical frailty. And as I was figuring out how to help her hold up her end, I was shocked to discover how harsh the social world can be toward old people with cognitive impairments. Eventually, the story of my mother’s last years became a chapter of my book.
My mother had always been animated, funny and engaging. And gregarious: She liked to talk. After she moved to Florida in her 60s, I accompanied her on mile-long walks along the beach. Dozens of people greeted her. Between interruptions, she provided well-crafted Jewish jokes, news about relatives and fascinating information about generations past.
Through her, my world expanded back into the early 20th century. Her heroes (Paul Robeson, John Dewey, Maggie Kuhn) and her film stars (Bette Davis, Cary Grant) became mine. She was Heritage Central. Some people dismiss old stories and historical allusions. But as I grew closer to her in her 90s I came to love her jokes and stories even more. She died two years ago, and I am sorry I didn’t record her speech. She wouldn’t mind my telling the story of her memory loss: She wanted her life to be useful.
At first, focused as I was on her stories and commentaries, I was not alert to her memory loss. But
was. My mother made discoveries about her cognitive processes as if she were a neurologist. “I have no frame of reference,” she stated, factually, about people she remembered knowing well. She, with her great executive abilities, reported, “I have lost initiative.” I believed in her right to know whatever I was learning about cognitive impairment, a subject that her life had suddenly made urgent.
“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.