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He's Still in There

"More Than Death, Fearing a Muddled Mind." I read the headline inThe New York Timeswith recognition. When my father was diagnosed with Alzheimer's and I learned I had a better-than-average chance of getting it too, I felt the same way the people in that newspaper story did.

Every article about the disease seemed to make the same claim: when the brain cells responsible for reasoning, memory, and language are destroyed, the sufferer "loses the self." How could Dad bear losing his self? What if I lost mine? Although I wasn't really planning to use it, I bought a copy ofFinal Exit, the guide to committing suicide, just in case.

In our home, a nimble brain was prized above all else—strong body, clever hands, even an open heart. Only one epithet was forbidden: stupid. When Dad, a psychologist, felt his mind wandering from him, he fell into despair. "I see a tall, black wall in front of me," he told me early on. Later, my mother confided, "I can't have a relationship with someone who can't have a rational conversation." Soon, he couldn't—and she couldn't. She moved out of the apartment she shared with my father and in with a man she met in her caregivers' support group.

Then I started spending time with my father and writing a book about dementia, and a strange thing happened: my fear diminished. Reading history and anthropology, I learned that I'd inherited my terror from a culture that assigns outsized value to reason. In theory, we might appreciate the rest of what makes us human. Then a failing mind might cease to seem worse than death.

It was Dad who turned theory into reality. His memory is blank; words float by him in a soup. He can't button a shirt or negotiate a toilet. Yet when I look at him—at his body, his face—I see…him. Warm, enraged, rejecting, beseeching, profane, silly: much of his mind is gone, but his self is still there.

Three centuries ago, Western culture called reason the mark of morality, the ticket to personhood. "I think, therefore I am," the French philosopher René Descartes wrote in 1637. Since then, the logic of our psychology, law, and philosophy has followed. If I do not think, I am not a person. Couple this worship of reason withAmerica's reverence for independence, and only one kind of person—the rational, autonomous kind—merits full status.

It is no wonder, says the ethicist and gerontologist Stephen G. Post, that we loathe and fear dementia. "Nothing is as fearful as AD," he writes, because it violates the spirit of independence and productivity that dominates our image of human fulfillment. Post calls ours a "hypercognitive" society.

A society that I happily belonged to. So when Dad began to bumble, I felt discomfort verging on disgust, recalling the queasy triumph I'd felt when I bested him in an argument at the age of 16 or 20. But slowly, surprisingly, our relationship, never great to begin with, improved, precisely because we couldn't have a rational conversation.

Intellect was Dad's identity, but it was also his armor and his weapon, which kept everyone at bay. Without clever words, our old means of mutual destruction, we began to communicate. We started "speaking" through music. At first, Dad and I danced. He is disoriented in space now, so we tap out the rhythms on each other's hands and hum together.

Today, for the first time since I was small, we hold hands when we walk. We've reclaimed laughter, no longer at each other's expense. Jokes consist of nose rubs and funny faces. Without memory, Dad harbors no grudges. A tiff is forgotten as quickly as it flares. And while he anticipates tomorrow no better than he remembers yesterday, when I put on my coat he always asks, "When are you coming back?"

"Next week," I say. It means nothing, given his instant-to-instant life. Yet the ritual exchange seems to reassure him.

People ask if my father recognizes me. The word daughter no longer registers, I tell them. He doesn't remember my name (or anyone's), but he usually remembers the woman with the spiky hair and green leather jacket who arrives at his door; he calls her (me) Shorty. Our relationship may start afresh with each visit, but it is real. Most important, this relationship and those with his live-in caregiver, the daycare-center staff, and my mother keep my father real. They keep his self alive.

There may be no drug (yet) to cure dementia. But relationships are always possible, as long as the person of sounder mind holds up his or her end. Cultivating long, loyal relationships with people who understand this assuages my terror of losing my mind.

 

Sometimes, when my dad shouts at an unfamiliar person entering the room, when he flails against a medical procedure or slumps before the TV, face slack and chin spittle-flecked, I wonder: how can he live? Through the eyes of a writer and reader, skier and cook, his life looks unbearably empty.

It is at these times that I must try to see from inside his eyes. Of course, he experiences pain. But so do we all. I can't know his pain, but, living as he does in his own private here and now, he is spared some of the fears and sadness that the rest of us face. September 11, for instance, passed him by unnoticed.

He also experiences pleasure: chicken stew and butter cookies; walks outdoors, greeting dogs and children; his beloved Brahms and Bach, whose melodies, if not whose names, still reside in his deep memory; babbling on uninterrupted—a first in our contentious family.

And he has love. The only child of an emotionally unavailable single mother, my father sought unconditional maternal love from every woman in his life—teachers, colleagues, daughter, wife. Now in his ever-attentive professional companion, he has finally found a good mother. Ironically, in losing part of his mind, the father who deployed brainpower to commandeer the admiration of his children finally found a daughter.

Don't get me wrong: none of this is worth becoming demented for. But in his oblivion, relieved of anxious need and competitiveness, my father seems happy.

Because we fear dependency and dementia, we avoid those who are frail of body or mind and prevent ourselves from imagining what their lives might be like. The more we avoid them, the less imaginable their lives become. When we encounter them, navigating the sidewalk with odd steps, mumbling gibberish, they are foreign. We recoil. Then we ensure their foreignness by consigning them to nursing homes.

In isolating them, we create the empty, faraway world we imagine theirs to be. And in isolating ourselves from the aged, a custom peculiar toAmerica, we make our own aging foreign to ourselves—and all the scarier.

What I've learned from my father is that aging is ordinary. Putting myself in the shoes of a man who can no longer tie his shoes, I have discovered that pleasure and pain, love and loss—and dependency—attend us from the first breath to the last.

Aging is a biological inevitability, but the self is not a body part that wears out with time. It is a social phenomenon, created and sustained in relationship. While I collaborate with my father in preserving his self, I explore with my younger friends how we might do the same for one another.

I touch my father and I am less afraid.

Judith Levine, a Brooklyn,New York, writer, is the author ofDo You Remember Me? A Father, a Daughter, and a Search for the Self(Free Press, 2004), from which this essay is adapted.

A leading research psychologist has been experimenting with activities to engage the minds of people with advanced Alzheimer's disease. See the surprising—and hopeful—results of his efforts in the upcoming September issue ofAARP Bulletin.

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