I recently read a Next Avenue interview with Jonathan Kozol, author of the memoir The Theft of Memory: Losing my Father One Day at a Time. Jonathan’s father Harry, a psychiatrist and neurologist, was diagnosed with Alzheimer’s in his late 80s and entered a nursing home at age 90. Jonathan arranged for his dad to return home six years later, and his dad stayed there until his death at age 102. I was particularly interested at what Jonathan told Judith Graham, the interviewer, about their relationship.
Jonathan had traveled extensively and spent relatively little time as an adult with his father. When his father was diagnosed with Alzheimer’s, Johnathan decided to spend as much time as feasible with him. He tried to have genuine conversations rather than the superficial pabulum that is often served up to those with dementia:
“What I wanted to avoid, above all else, was what I call phony talk. That sing-song tone that too many adopt when they speak to the ill and the elderly. I was convinced that my father was too intelligent in his dementia to insult him with that kind of conversation. And I found that as a result he was wonderfully responsive to me.”
This seems to have been a strategy particularly well-suited to the strengths that Harry Kozol had retained. Jonathan notes “My father had always been a charming conversationalist.” His facility in verbal exchanges continued even as his memory deteriorated. Jonathan observes that “no matter how impaired my father’s memory became, no matter how partial his memories were, he wasn’t a stranger to me. He was, at heart, the same man I’d always known and loved.”
Taking his father seriously as more than an Alzheimer’s patient led Jonathan to also take seriously his father’s repeated requests to come home. To make his father’s homecoming possible, he ensured that his parents had around-the-clock caregivers. Harry seemed to get pleasure from being at home, especially when he sat at the office desk he had used during the 60 years when he was in practice. The arrangement was very expensive, enough so that Jonathan’s parents eventually exhausted their life savings and the son had to take over the financial responsibility. Still, he felt joy seeing his father at home and benefited from having such a close relationship with him during those last years.
I, too, wasn’t around my parents much for most of my adulthood but returned to be with them as a result of my dad’s dementia (in his case Lewy-Body dementia, not Alzheimer’s). I lived with them for the last two years of his life and helped with his care for all except the last three months, when he was in a memory unit at a nursing home. I would have liked our interactions to have been like those of the Kozols: memorable father-son exchanges. Frankly, though, our conversations were rather shallow. Was that because I did something wrong? Did I regard him just as a dementia patient, not a person? Didn’t I try hard enough?
Admittedly I’m not a great conversationalist, and often cared for my dad without doing much to verbally engage him. Still, I think the conversations we had were what we were capable of having. Dad had never displayed the “clever repartee” that Kozol senior reveled in, so it’s not surprising that such verbal facility didn’t suddenly appear along with his dementia. He had been a storyteller, but memory loss deprived him of his collection of anecdotes. He retained something of his sense of humor, so we laughed together about simple incongruities or unexpected events. He also retained his capacity for enjoyment; we liked to eat good food together and be entertained by my dog. He had always loved his family, and he continued to express his love for each of us and his appreciation for what we did for him.
After Jim Ritzema developed dementia he, like Harry Kozol, was still the person he had been, albeit lacking much in the way of memory and thought and with considerably more anxiety. For some families dementia occludes the parent or spouse they once knew, but that wasn’t our experience. To the end dad was recognizably the man we had loved. I’m grateful that I could spend those two years helping him. And I’m glad that, along with the dreariness that characterized many days, there was laughter and joy in our life together.