Helplessly watching as a neurologist’s brain unravels.
Harry Kozol, a brilliant Boston neurologist and psychiatrist, was diagnosed with Alzheimer’s disease in 1994. “It was one of the doctors he had trained who made the formal diagnosis of his illness,” writes Kozol’s son, Jonathan, in his moving and thoughtful new book, “The Theft of Memory.” The younger Kozol is a National Book Award-winning author best known for his 50 years of work with vulnerable, underserved schoolchildren and their families. Here, he turns his attention, along with his profoundly humane insights, toward his own parents at the end of their lives.
One of the most unusual aspects of the elder Kozol’s medical condition was his ability to understand and diagnose it himself. “I can pinpoint this as a neurologist,” he told his son early on, saying that his “amnestic spells” were “clear-cut indications of degeneration of the cells in the cortex of the brain and in the hippocampus.” Unwilling at first to seek medical attention from another doctor or even to discuss his situation with his wife, Ruth, Kozol continued to live in their apartment in Boston until a fall and resulting hip-displacement injury led to surgery and the further deterioration of his cognitive abilities. He had to be moved to a nursing home.
At this point, Ruth asked her son to come to the apartment and sort out some of his father’s papers. At 92, Ruth Kozol was two years older than the doctor, “still a relatively healthy woman and still sharp and lucid in her thinking,” but she seemed saddened and “lost” when her husband went into the nursing home.
Although both parents experienced decreasing physical and cognitive abilities throughout this period, Jonathan’s love and respect for them did not diminish; nor did his interest in their lives in the present, day to day. Jonathan was shocked, in fact, to learn that very elderly people commonly have others “talking across them, rather than directly to them,” as if they were not physically present or as if they were unconscious.
Convinced that his father continued to have “an inner life of cerebral activity — ‘a life beneath the life’ is the way I imagined this,” the author made every effort to stimulate memories, promote conversation and remain intimately connected to him in the moment. He was disappointed at an attitude he perceived in one or two of the physicians he encountered: an assumption that fragile elderly individuals had little to contribute to society and a “willingness to relegate a person in my father’s situation to a lower and less vigilant degree of medical attention.” Kozol could not help thinking of the way schoolchildren in at-risk urban neighborhoods, another population unable to offer economic benefit to the greater community, were so often denied the attention that they, too, acutely needed.
By contrast, Kozol cites his father’s unstinting care of his patients at all levels of society over the decades, from playwright Eugene O’Neill to low-income and indigent patients in the wards and clinics of Boston. Strikingly, the elder Kozol continued to see himself as a physician, and he persistently retained “the terminology of neurological evaluation” in notes and memos he kept about his condition for as long as he was able to write them.
Like many other residents of nursing homes, the elder Kozol often expressed his desire to leave. The author writes, “Daddy kept on asking whether it was time yet for me to take him home.” Unlike most nursing home residents, the elder Kozol finally did have the opportunity to return to the apartment he shared with his wife. Ruth, now physically frail, drifted off into fantasies at times and had in-home caregivers of her own. Her son was not sure that the doctor’s return to the apartment would be the best solution, but when questioned, Ruth made it very clear that she wanted her husband to come home.
Partly for financial reasons, the decision was made. The cost of the nursing home for Kozol and in-home care for Ruth, even with insurance, had dramatically depleted their assets.
The prospect of a frail couple in their late 90s living together at home would have been daunting were it not for their three remarkable caregivers — Sylvia, Julia and Lucinda — and the closeness of their son, who writes that during this period he “probably spent more hours with [my father] than I’d done at any time since I was a boy.” He found himself unable “to look upon him now with a degree of distance, and through a lens of pathos, as if he were no longer the father I had known.”
His mother, too, came into sharp focus for him during the last years of her life, emerging “in greater fullness and complexity.” At the age of 100, she told stories about her childhood and about traveling to Europe with her husband, even about his love affairs and her own. She sometimes interrupted these to insist that Jonathan or a caregiver “check up on the baby,” as she now referred to her husband in the other room.
Inevitably, first Ruth and then Harry Kozol died, surrendering at last to what the author called their “terminal fragility.” Their son’s willing, determined intimacy with his parents all the way to the end of their old age gives this book its power. Among Jonathan Kozol’s gifts as a writer is his ability to enter the world of his subjects, to live in the country of their experience and to tell their stories with clarity and compassion. This beautifully told personal account is further enriched by an abiding family love.
THE THEFT OF MEMORY Losing My Father, One Day at a Time By Jonathan Kozol Crown. 302 pp. $26