ALZHEIMER’S DISEASE is having a moment. Julianne Moore won an Academy Award for her portrayal of a sufferer in Still Alice. Glen Campbell was nominated for one, too, for the song he wrote about his Alzheimer’s that was featured in the documentary I’ll Be Me. Roz Chast won a National Book Critics Circle Award for Can’t We Talk About Something More Pleasant?, her graphic narrative of her parents’ decline. A recent series on NPR focused on selections from On Pluto, journalist Greg O’Brien’s description of his own early-onset disease.
It’s a far cry from 1980, when I would describe the book I was then writing about senility and everyone thought I was saying “old-timers’ disease.”
So Jonathan Kozol’s The Theft of Memory arrives at a moment when our culture seems uniquely primed to greet another harrowing narrative about a beloved family member’s descent into Alzheimer’s. This memoir, however, differs from similar books in two ways: The father who experiences the ravages of the disease, Harry Kozol, is an esteemed, Harvard-trained neurologist and psychiatrist who recognizes his own diminution as it starts to overtake him; and the son, an award-winning author of fifteen books about education, poverty, and inequality, wants to do everything he can, for as long as possible, to keep his broken father alive.
In an early scene, Dr. Kozol takes his son aside to tell him what he’s noticed about his own cognition. The elder Kozol’s language is beautiful, giving the reader a sense of his insight and precision. There have been “brief attacks of interrupted consciousness,” he says, checking the door to make sure his wife can’t overhear. He feels “a definite blocking of ‘capacity’” and “a premonition of my imminent removal from contextual reality.” He is eighty-six years old.
Dr. Kozol gets an official Alzheimer’s diagnosis a year and a half later. After that, things stay pretty much on course until he falls and has an operation to repair a dislocated hip. The anesthesia seems to accelerate his decline, and Kozol has to put “Daddy,” now ninety, in a nursing home not far from Boston. Soon it’s not clear whether his father even recognizes him. “It wasn’t sad to be with him,” Kozol insists, “because he didn’t seem to be unhappy. His confusions obviously troubled him but didn’t seem to frighten him.”
They might not frighten him, but they frightened me—since I, like the book’s other readers, know that this is just the beginning. It pained me to watch this once-articulate physician reduced to small-talk sleight of hand. “Did you get it all done?” he asks his son, obviously not knowing what “it” might be. “How are they treating you down there?” he asks, not sure quite what he is referring to.
With the help of Lucinda, his favorite nurse, Dr. Kozol writes his son letters. Like this one:
Dear Jonathan,
How have you been since our last visit, since our very last? Since I enjoyed it and I did, and do, the same. And I hope I will surely see you since our most recent. And I will gain some more impressions and good help and hope in these impressions and enjoy all your opportunities. Good for you and your parents and your friends and nearby visitors!
Sincere Regards,
Harry
There’s no doubt that when he wrote this at the age of about ninety-two, four years after his diagnosis, Dr. Kozol was drifting well beyond the reach of contextual reality. But his son somehow finds comfort in this missive; his father’s handwriting is the same as it has always been, he points out, and despite the “obvious discontinuities” at least each sentence is internally coherent. “Only in the final line did he seem to go off track and forget the person he was writing to,” he observes, as though the rest of the note, and many others like it, weren’t troubling enough.
Kozol describes his father with great fondness and care, but I was made aware, again and again, of how an outside observer might have interpreted the severity of the elder Kozol’s condition differently. Take his ninety-third-birthday party. The author’s older sister—all but invisible in the book, supposedly because she lives far away in the Midwest and is preoccupied with her husband, in-laws, and two adult daughters—is not there. His mother, age ninety-five, is not there, either, too frail to make the trip from Boston. The only person at the gathering, besides Kozol and his dog, Persnickety, is a beloved private-duty aide, Silvia, who watches Dr. Kozol eat some delicious ripe blackberries and then grabs a napkin and wipes the juice from his chin.
Persnickety soon develops an inoperable tumor, and the vet tells Kozol she might have twelve months left before losing “the satisfaction that she took in life.” Is Kozol using the same metric for deciding how long his father should live, too—as long as he is able to continue taking some satisfaction in life?
If that’s his guideline, he doesn’t spell out how he expects it to be followed. Nor does he say how satisfaction is to be measured in someone with a declining ability to communicate. It’s all so subjective: Kozol looks at his father and sees the pleasure he takes in the blackberries; I look on, as an outsider, through what Kozol dismissively calls “a lens of pathos,” and focus on the drool.
One summer evening, Kozol mentions to his father that the sight of boys fishing earlier that day had reminded him of when they went fishing together in Maine when Kozol was a child. Dr. Kozol—by now ninety-five years old and virtually mute—makes a gesture his son interprets as casting a fishing line, “looking out beyond the wooden railing of the patio as if to see the spot on which the plug had landed,” as Kozol writes. He knows his father might be doing nothing more than imitating his own casting gesture, but it pleases him, anyway.
He tells us then about his father’s old tackle box, sitting in his garage at home, whose pungent smells bring back “a flood of memories” when he opens it. But the son never brings the box to the nursing home. “Probably I feared that it would have no meaning for him,” he writes. He also fears that his father would only stare at the reels and lures with “perplexity and blankness.” Better to leave that particular sensory mnemonic unexplored.
A common trope of books written by children of aging parents is that, even though the parents have Do Not Resuscitate (DNR) orders on file, nursing homes and hospitals often disregard them in a frantic effort to keep decrepit bodies alive at any cost. But Kozol has the opposite problem. He refuses to sign a DNR for his father, which makes him feel as if he were breaking an unspoken code—fighting the staff’s inclination to let a very old and demented man die peacefully. His insistence on aggressive medical care for his father feels like “pulling constantly against a very heavy weight, not of outright opposition on the doctor’s part, but of passivity, procrastination, and inertia.”
Dr. Kozol has a couple of health emergencies—impacted stool at age ninety-five, a urinary-tract infection at age ninety-eight, and then an ulcerated bedsore. A different son might have considered any one of these maladies a blessing, a chance to ease off this mortal coil for a man who, despite some rare indications of “a life beneath the life,” was incontinent and uncommunicative and clearly hurtling toward the loss of everything. Even Dr. Kozol himself, while charting his early symptoms with such heartbreaking accuracy, had described his condition as an “impending desecration.” But that’s not how Kozol sees it. Each emergency is cause, in his mind, for therapy aimed at preserving whatever physical functioning his father is still capable of.
He recognizes that his position is irrational, but he can’t help himself. “I did not want to let my father die because I could not picture life within this world without him,” he writes in a moment of candor. “As nonresponsive as he often was, and physically enfeebled as he had become, I could not escape the crazy thought that I still needed him.”
Harry Kozol finally dies at the age of 102, while hospitalized for an allergic reaction to a drug. The way he dies helps explain one aspect of the book that had puzzled me: why the author devoted so many long passages to details of Dr. Kozol’s most illustrious patient, the playwright Eugene O’Neill. Was this just crass name-dropping—a way for Kozol to show us how important his father was in his prime? Dr. Kozol had psychotherapy sessions “at least once almost every day” with the playwright, who moved to Boston in 1951 specifically to be near him, Kozol writes. In addition to serving as O’Neill’s therapist, Dr. Kozol became a sort of surrogate son to him.
On rereading the book, I was struck by the strong resonances in this pair of filial relationships, made clearer by the two deathbed scenes that bookend the story’s emotional arc. Early on, we read Dr. Kozol’s notes about O’Neill’s death: “I held his wrist within my hand as his pulse was failing and his heart stopped beating. . . . I didn’t want to let him go. I had a sense of desperation.”
Later, we come to Kozol at the moment of his father’s death, and the echoes are plain: “It was time for me to give up my resistance to finality. . . . I held my ear against my father’s chest and listened to his breathing as it came at longer, then much longer intervals. At four minutes before nine o’clock, his breathing stopped.”
Kozol was seventy-two when his father died, and he wrote this memoir in less than a year, finishing it in 2009. Then he put the book away. Not until he took it out again several years later and wrote an epilogue did he finally address the question that haunted me: Why did he fight so hard to keep his father alive, even past the point when it might have been reasonable to let him go?
Kozol says he needed time to heal his relationship with his father, who had been stern and demanding in his heyday, and had greeted some of his son’s choices with palpable disdain. But as his father’s harshness faded in old age, Kozol found himself cherishing his company. Eventually, as the son witnessed the father’s slide toward dementia, thoughts of Dr. Kozol’s “turbulent complexity” were swamped by happier ones. As Kozol writes in the book’s lovely last line: “Some of the blessings that our parents give us, I need to believe, outlive the death of memory.”
Robin Marantz Henig is a freelance science journalist whose first book, The Myth of Senility, was published by Doubleday in 1981.