Battling Alzheimer’s: A Fight for Dignity

National Book Award winning author Jonathan Kozol has earned a reputation as a fearless advocate for  our poorest children in a broken education system, giving a voice to those who need it most. Now, he turns that same clear, compassionate mind to another voiceless demographic: those with Alzheimer’s. In this case, however, the link is deeply personal; it is his own father suffering with the disease.

Kozol, however, approaches the subject matter from a wholly different perspective as his father, a Harvard trained psychiatrist and neurologist, tries to understand and chronicle his own mind as it slowly slips away from him. Determined to help his father hold on to his dignity and mental capacities for as long as possible—over ten years and well into his 90s—he builds a small, close team of caregivers to challenge his intellect, as well as care for his essential needs, the former of which he finds woefully lacking in basic nursing home care. “Children of  Alzheimer’s patients frequently speak of the challenges they face in finding and retaining reliable companions who are not merely technically effective but also likable and interesting men and women who have a gift for making an emotional connection with the people whom they care for,” he writes.

Kozol, too, refuses to treat his father with pity, with platitudes, and with the kind of knee-jerk assumptions we often ascribe to those with this condition. Instead, he journeys with his father: helping him delineate a thought, strike up profound conversations, and push the boundaries of intellectual engagement. In doing so, their connection as academic to academic is fully realized, even as their bond as father and son becomes perhaps as intimate as its ever been.

As his father’s mind deteriorates, he continues to awe his caregivers and his son with his acute observations about his own condition, his sense of humor, his empathy for his wife, and his proud, but sometimes critical, remembrances of his career. Harry Kozol was not an ordinary clinician. He worked with highly complicated people, including the famous playwright Eugene O’Neil who he treated personally every day for many years, the last of his life in fact. Due to Dr. Kozol’s unique abilities to understand the differences-as well as the links–between psychiatric and neurological conditions, he was often called as an expert in high-profile cases, such as the infamous trial of Patty Hearst as well as of “The Boston Strangler,” Albert H. DeSalvo’s. As Jonathan cares for his father, he also spends countless hours intently reading the enlightening notes his father kept during these cases, and many others, gaining an even deeper respect for him—and fueling his energy to preserve his connection to his life’s work.

Yet it’d be a mistake to call Kozol unrealistic or in denial. He writes, “the observations on brain function could not go on forever. Soon he would cease to be the doctor and remain only a case for other doctors to describe.” As he moves into acceptance, though, he never acquiesces to complacency. In perhaps the boldest, toughest of his decisions, he moves his father out of the nursing home where he’s lived for years and back into his Manhattan apartment with his wife, who’s nearing 100, but is still physically and mentally well. It’s a choice riddled with potential problems, chief among them the negative effect it could have on his mother. Yet driven by his father’s poignant refrain whenever he leaves the nursing home to “take me with you,” as well as by his caregivers’ fierce commitment to take over his care without the nursing facility’s assistance and, ultimately, his mother’s insistence to bring him home, Kozol does just that.

Once there, his father seems to revel in spending time in his office and takes tea with his wife each day, reinforcing Kozol’s confidence in his decision—though it comes with a large price tag, and threatens to leave his formerly well-off parents destitute.

During this time, Kozol observes and interacts with his mother more intensely, and comes to appreciate the sometimes turbulent but, ultimately loving and respectful, relationship his parents had. Though always aware of his mother’s fortitude, he gains an even more profound realization of her independent, high-spirited personality—an unexpected perk of an otherwise heart-wrenching experience. Fortunately, she too has around-the-clock care from people she trusts and who’s company she truly enjoys, which brings me to a small point of contention.

Kozol’s family’s pedigreed background and their means to provide such quality care can, at times, feel grating, like a luxury so few can afford. But, Kozol being Kozol, doesn’t merely tell his own story. Beyond the very personal, here too is his signature assessment of institutional problems. After his father suffers more than a few bad errors of judgment from the nursing home’s medical director and his doctor, a couple which nearly kill him, he begins a critical examination of the field of gerontology, a field which does not come with as much prestige as others – and thus less qualified practitioners.

“A child—or anyone who’s relatively young—has potentially at least, a life of productivity ahead. A ninety-eight-year old neurologist who suffers from dementia has no further value to the economic order…I could not help thinking that the willingness to relegate a person in my father’s situation to a lower and less vigilant degree of medical attention was an accurate reflection of a the values of a social system which, as I had learned in my own work in education, measure human life, more frequently than not, in rather hard-nosed and explicit terms of future payoff to the national well-being.”

While Kozol fully understands that mentality, in the end it subdues any second thoughts he may have had for the choices he made: “I do not regret one bit that I pressured and pursued my father’s doctor as I did. If anything, I wish I had done it more relentlessly.” In that declaration, he fights not only for “daddy,” but for the forgotten elderly everywhere.

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