“Take me home.”
How many caregivers have heard this plaintive refrain from an elderly parent in a nursing home who feels displaced and longs to leave?
Jonathan Kozol, a National Book Award-winning author who writes about injustice and education, took it seriously when his father began voicing this plea repeatedly. Harry Kozol had been a renowned neurologist and psychiatrist before Alzheimer’s disease struck; though his memory was deeply compromised, an underlying intelligence and capacity to enjoy life remained.
Jonathan came to believe his father felt imprisoned and that he could go home again, with careful planning and considerable support. And so, six years after moving to a nursing home, Harry returned to the Boston, Mass., apartment he’d shared for decades with his wife, Ruth, who lived there still. He survived another six years, to the age of 102, outliving Jonathan’s mother by two years.
His Father’s Final Years
In his beautifully written new memoir, The Theft of Memory: Losing My Father One Day at a Time, Jonathan Kozol describes how people tend to dismiss those with dementia as less than fully themselves. He never felt this way about his father, whom he looked up to all his life, though the relationship at times was difficult. Instead, Jonathan Kozol’s love for this brilliant, complicated man deepened along with his respect as he became a devoted caregiver.
I spoke to Jonathan Kozol recently from his home outside Boston. What follows is an edited version of our 90-minute conversation.
Next Avenue: You made a choice not to distance yourself from your father when he developed dementia — to be fully present.
Kozol: I wanted to remain close to my father as long as possible. I had missed opportunities to talk with him at length earlier in my career when I was traveling a great deal. Once he became ill, I set aside entire weeks or months to be close to him. I would go to the nursing home and spend hours at a time.
I tried very hard to talk to him in what I would call real talk. My father had always been a charming conversationalist. He was an old-fashioned man. He reveled in good conversations and clever repartee. And that did not entirely abandon him as his dementia progressed.
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.
You came to know your father in a different way during these years. What did you learn about him that you hadn’t known before?
Kozol: I came to know a gentler side to him. He’d always been an extraordinarily authoritative human being. He was one of Boston’s most respected neuropsychiatrists. And he’d been quite authoritative with me at times during my career when I wasn’t sure of my direction in life. Suddenly now, the balanced shifted. I was the parent and he was, to some degree, the child.
He was still as eloquent as he’d always been before. In fact, one of the main points of the book is 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.
He was still as eloquent as he’d always been before... He was, at heart, the same man I’d always known and loved.
— Jonathan Kozol
There are those who say that once a person has Alzheimer’s that person ceases to be the person we know. As one journalist in Boston put it recently: pray for them to die as soon as possible. But I never prayed for my father to die. I cherished every moment with him. I wanted him to live as long as he took any satisfaction in his own existence.
Were you frightened by your father’s dementia?
At first, I was terribly frightened. I knew that his memory was becoming a bit uneven. But it wasn’t until 1992 when he was 86 years old that he actually sat me down in his apartment and described to me what he called attacks of “interrupted consciousness” he had been experiencing. He also spoke of what he called “amnestic spells.” He described both of these states in detail, then, drawing on his clinical experience, he told me had diagnosed himself with the early indications of Alzheimer’s.
Two years later, my father was diagnosed by another doctor in Boston who had been one of his students. And two years after that, he was in the nursing home. Once he was in the nursing home, we began having long conversations on a regular basis and I didn’t feel frightened anymore. I simply rejoiced that he could still communicate with me and the two of us became closer to each other than we’d ever been before.
You brought your father home from the nursing home. Why was this so important?
After he’d been in the nursing home about four to five years, my father began asking me, “Are we going home soon?” At the end of an evening, when he saw me getting up and putting on my coat, he would say, “Are you going to take me home now?” He kept asking me this. It was almost as if he felt he was in prison and wanted to figure out a way to escape.
A lot of people said I should dismiss his questions. “Your father has Alzheimer’s,” they said. “This is a product of his dementia.” But he said it so often and so earnestly and so wistfully that I decided I should take him at his word.
It took me a while, but finally I decided to bring him home. It took a lot of arrangements. I had to have full-time companions around the clock. Especially because he was going back to the apartment where my mother was living, and although she was entirely clear-headed, she was physically frail and also needed help.
How did he respond?
I’m convinced he got a great deal of pleasure from being at home. Two of his companions, Silvia and Julia, very close friends of mine, marvelous human beings, told me that he would go out in the living room in the morning and sit at his desk. This was his office desk for 60 years when he was practicing medicine. One of the helpers said he had a prideful look when he sat there. And I can’t be sure, but I believe he felt a kind of dignity about sitting there.
I felt a sense of joy at seeing him in his own home and especially being in the company of my mother. At the onset of his sickness, she had become frightened of my father because he grew restless and sometimes it seemed as if he was going to strike her. But now, in his gentleness, she was very tender toward him.
You found wonderful caregivers for your mother and father. That isn’t always the case. What made your experience so positive?
There were other helpers at first who were not ideal. But I was fortunate. Among all the people who came and went in the early years, I was able to pick out the ones who I could see related best to my father and mother and who I myself enjoyed talking with. Just by the process of elimination and good fortune, I found wonderful people. I was very blessed.
Once my father came home, in the course of a year, the help, the companions, and the daily living costs came to about $200,000 a year. And by the time my parents were close to 100, they had spent all their life savings. From that point, I took it on.
One of my friends who read this book carefully asked, “What happens to the rest of us when our parents get old?“
The only answer I could give was that (this kind of care) is very expensive and a civilized society would make it possible for every family. I don’t think our nation will truly be civilized until we treat the elderly and those who have dementia with every bit of the same respect that we treat one another, our peers and our children.