Being afflicted with Alzheimer’s disease is like walking into one’s office, going to a file cabinet, opening a drawer, and discovering that it’s empty. Thus did a woman describe her memory loss due to this awful disease. (‘Some Hope Is Better Than Having No Hope,’ NY Times Daily Podcast, 7/7, 2021). This Daily Podcast episode was inspired by the FDA approval last month of the new controversial, questionably effective, and exorbitantly expensive drug Aduhelm for people with early-onset Alzheimer’s.
I watched my mother suffer memory loss this way over the last five years of her life. Though her dementia was not Alzheimer’s, her experience was extremely frustrating for her and heart-breaking for me. Granted, she lived almost a century and enjoyed excellent health well into her early 90s, so one can’t complain – but memory loss at any age and in any degree is devastating.
The most startling moment for me in the development of my mother’s disease came when I met her one day for lunch at her assisting living home when she was 95.
“Hi Mom,” I said as I approached her table. She’d forgotten I was coming and was already half-way through eating her lunch.
“Hello,” she responded.
“Did you forget I was joining you for lunch today?”
“I should know who you are, but I don’t.” she said.
I thought she was joking. When I told her I was her son John, she said: “You don’t look like John.”
“You’re kidding! Right?”
“You say you’re John, but you don’t look like John. He’s much younger than you.”
She apparently was remembering a much earlier period in her life and mine, when I was a teenager or a 20-something.
We sat together, talked about nothing in particular, and I hoped that by the end of the hour she’d remember who I was. She didn’t. The next time I visited, her memory was back and she knew me immediately. I reminded her of what happened the week before. She didn’t recall my coming. Such is the nature of dementia – memory comes and goes.
Mark Twain said: “When I was younger, I could remember anything, whether it had happened or not; but my faculties are decaying now and soon I shall be so I cannot remember any but the things that never happened. It is sad to go to pieces like this, but we all have to do it.”
Perhaps Twain was right, but science holds out the hope that treatments will be developed to slow dementia and spare many of us the effects of this debilitating and humiliating disease.
The woman suffering from Alzheimer’s had worked for decades as a clinical social worker. After each client session she recorded notes from memory of everything that was said. In the early stages of the disease before she was diagnosed, however, she couldn’t remember anything that happened during her sessions. She complained about it to her wife of 45 years who tried to comfort her: “Don’t worry. It’s just aging. It happens to everyone. We all forget things.”
Yes, aging causes everyone to forget some things – a word here and there, the name of a book or film, even the names of friends. I experience some of that myself, but that isn’t dementia – yet. I confess, having watched my mother’s memory disappear that I worry that it will happen to me too.
Physicians prescribe many things we can do to maintain good mental health and memory: getting enough sleep (7-8 hours/night for older adults), keeping our weight down, eating less fatty foods, drinking daily two to four cups of coffee, eating chocolate (in moderation), exercising daily, staying engaged with work, learning a foreign language, playing a musical instrument, creating art, listening to lectures, reading, joining a book group, writing, doing crossword puzzles, playing chess, Ma Jong, and Bridge – activities in which we’re intellectually challenged and compelled to focus our attention. Also, staying connected with family, friends, and community, and even flossing our teeth to prevent tooth decay and gum disease that neurologists claim is an antidote to the early onset of dementia. But, when dementia comes, there’s really nothing ultimately we can do now to stop it before we fade away.
One other thing I think we ought to do before any of that happens – write our stories while we can, describe the most significant events and people in our lives, our memories of parents, grandparents, and mentors, of what’s been important to us over decades, and share them with our children and grandchildren, nieces and nephews, the next generation in our families. If your parents are still in this life, persuade them to write their stories if they’ve not done so already.
Memory defines who we are, and our collective memories are the essence of the culture we’ve inherited and carried forward, and so losing our memory is not only a catastrophe for us individually but for our community as well.
Simon Dubnov (1860-1941), the Jewish historian of the Riga Ghetto who perished there, put it like this: “Yiddin, Shreibt und farschreibt – Jews, write it down, write it all down” lest our children and those to come never know.