I have two roles that influenced my expectations of Jonathan Kozol’s latest book, “The Theft of Memory: Losing My Father One Day at a Time.”
First, my parents are in their mid-80s and are exhibiting signs of dementia. Second, for the past 10 years, my family has owned a franchise home care business that provides caregivers for senior citizens.
The two roles allowed me to accurately predict what was to come in Kozol’s book – up to a point.
First, I expected the patient to die by the book’s end, there being no cure for Alzheimer’s disease.
I also expected certain key elements in the story, pathos being the most important; that is, an emotional description of the patient’s journey from robust individual to one overwhelmed by mental and physical decline.
There would have to be moments of joy, humor, enlightenment, courage and compassion for the narrator. These moments would be outnumbered, however, by frustration, guilt, sadness and distress affecting almost every character in the story. I also anticipated the juxtaposition of good medical and elder care against the occasional incompetent doctor, nurse and caregiver.
All of these elements are present in “The Theft of Memory.” Happily, the curse of predictability does not lessen the value of Kozol’s well-written and thoughtful homage to his father, Dr. Harry Kozol, an esteemed neurologist and practicing psychiatrist. What’s more, this memoire contains some fresh elements.
The story will be familiar to anyone with a loved one who is diagnosed with Alzheimer’s or any other form of dementia. The initial diagnosis is followed by the gradual loss of memory that forces patient and family to wrestle with new and challenging behaviors, emotional turmoil, life-style changes, the rigors of providing long-term care, and the inevitability of death.
What makes Harry Kozol unique is that, because of his training, he was able to explain – at least for a time – what he was experiencing as the disease progressed.
To illustrate his father’s exceptional abilities, Kozol describes how he treated some of his patients, included the playwright Eugene O’Neill and his wife, Carlotta. The doctor was also called upon to interview Pattie Hearst and the Boston Strangler, Albert H. DeSalvo. These are some of the most interesting portions of the book, notwithstanding the publisher’s request that readers focus on “…the bond between a father and his son and the ways that bond intensified even as Harry’s verbal skills and cogency progressively abandoned him.”
As a caregiver, one thing that jumped out at me is that even wealthy families can be inundated by the high costs of long-term elder care.
At one point, Kozol’s parents had assets of about $2 million. Later, their trust attorney informed the author that due to downturns in the stock market, their funds would be depleted “in approximately eighteen months.” Indeed, the day arrives when his “parents had exhausted their life savings.”
To be sure, the care Kozol provided his parents was beyond the norm. Caregivers were initially engaged for his father in the couple’s apartment. Later, Dr. Kozol was transferred to a nursing home. His wife remained in the apartment, where she had her own helpers. More than a year later, it was decided that Harry Kozol would be better served back at the apartment. Husband and wife required a team of caregivers around the clock.
Kozol manages to keep the care in place with his own life savings, and because “one of my books landed, all too briefly, on the New York Times bestseller list…”
For those of us who are not best-selling authors or who don’t have millions of dollars in assets, the prospects are chilling.
As a businessman, I admired the exceptional caregivers that Kozol was able to hire to see after his father and mother.
“Right from the start, Lucinda went a great deal further than the call of her professional position. She quickly decided, for example to go into Boston to get to know my mother, so that she would understand as much as she could about my father’s life at home in the preceding years. She took an instant liking to my mother and she soon began going into town to spend an evening with her when she had no obligations at the nursing home. Sometimes she brought a chicken dinner she had cooked, so the two of them could have a meal together.”
Kozol was able to find and hire a half dozen or so others who were equally as devoted to his parents. We hire some pretty good caregivers at our agency, but I’ve yet to come across one quite like Lucinda.
In “Passages in Caregiving,” published in 2010, Gail Sheehy wrote: “The question is not if you will be called to act as a family caregiver – that call will come to most of us at some point – but how you will respond.”
Kozol is to be commended for his outstanding response to his parents’ needs, and for the admirable book that resulted.