Alzheimer’s disease as a thief of self

Do You Remember Me?

A Father, a Daughter, and a Search for the Self

Judith Levine

Free Press: 310 pp., $26

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If, as Rene Descartes has famously written, cogito ergo sum (I think, therefore, I am), what becomes of us as human beings when we can no longer think in the coherent, rational ways we’ve come to rely upon, asks Judith Levine in her excellent narrative, “Do You Remember Me?,” exploring the changes in her father as Alzheimer’s disease progresses within him. “[I]f I do not think,” she wonders, “I am not, or maybe I do not deserve to be.”

Yet the father she witnesses and occasionally cares for clearly does deserve to be, raising questions about personhood and how we, particularly in the West, have come to view those with diminished intellectual capacities. Levine’s father began to manifest signs of Alzheimer’s in 1992. He and his wife were celebrating their 50th wedding anniversary and his rambling monologue to guests signaled a change. “The next month Mom and Dad make an appointment with a psychiatrist ... ,” Levine writes. “When the diagnosis comes two years after that, it will hand Dad a sentence: he will lose his self.”

Charting her father’s deterioration over a decade, the narrative is equal parts poignant memoir, detailed exploration of the disease and the burden it places on caregivers, and philosophical look into the meaning of self. Levine, whose previous work, “Harmful to Minors,” was a critically acclaimed and controversial look into how protecting children from sex can be perilous, brings a daughter’s searching heart and a writer’s keen eye to the subject. Through her ongoing experience with her vibrant father, Stan, we watch the disease’s insidious progress as it robs him of memories, his history, personal autonomy and a continuous sense of who he is. As it does so, it also wreaks havoc on the family, creating quarrels over what’s best for Stan -- institutionalization, assisted living, home care? -- resulting a familial landscape littered with hurt feelings and resentment.

In a way, the disease steals Stan from his family. The father Levine knew -- highly intellectual, often distant, sometimes harsh -- disappears altogether, leaving her with a new father who sings and dances spontaneously and with whom, for the first time in her life, she can share genuine, loving companionship. “I have a relationship with a person who can’t have a rational conversation,” she writes. “And compared to what it was before, it’s a good one.”

At the same time, the price being paid by her mother is far too high. “I’m no longer his wife,” Levine’s mother tells her. “Now I am his caregiver.” Exploring the dilemma of the caregiver and the role love is supposed to play in alleviating society of its responsibility for the demented, Levine limns her mother’s retreat from her marriage and her embrace of another man who can be her partner rather than her patient. Eventually, the family cobbles together a pseudo-family for Stan, made up of compassionate caregivers who share none of the history that complicates the family’s attempts at care-giving.

With raw honesty, crisp writing and light humor -- she describes her father, for instance, as “a seriously wandering Jew” -- Levine details Stan’s increasing dementia and how her family copes (or fails to cope), as she crafts a lucid investigation into the boundaries of self, considering the loss suffered by many who are demented of their identity as “human” and wondering why there is no real place for the elderly and the diminished in our contemporary urban societies.

The whole concept of aging, she tells us, has changed, having become a compendium of disorders and diseases to be prevented, “an engineering problem to be solved or at least ameliorated,” in the words of historian Thomas R. Cole. How is one to enter the final stages of life consciously and openly when science is telling us we have a sickness that might be cured? According to some estimates, almost half of the people over 85 suffer from Alzheimer’s, thereby making the disease “statistically normal” among the aging, yet many continue to view it as a problem to be corrected.

With the death of former President Regan, the subject of Alzheimer’s and the pain it causes the family received a short surge of attention, but as Levine’s superb narrative makes clear, we’ve only touched the tip of this very large, complicated and heart-rending iceberg. “Do You Remember Me?” brings the full scope of that iceberg and its many crevices into painfully sharp focus.