Photo by Mark Hooper
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He’s Still in There
By Judith Levine, September & October 2005
My dad’s memories are ebbing away, but his soul survives
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Read All Articles in This Special Report
Inside Jim's Brain: How Scientists Are Untangling the Mysteries of
Alzheimer's
What It Feels Like: A Personal Account of Living With Alzheimer's
Stay Sharp Longer: Nine Simple Things You Can Do
Finding Help: New Choices for People With Early-Stage Alzheimer's
Great Pretenders: Common Ailments and Drugs Known to Monkey With Memory
Web Exclusive: Feed Your Head With Healthy Brain Foods
Back to the first article in this Special Report: You’re Wiser Now
"More Than Death, Fearing a Muddled Mind." I read the headline in
The New York Times with 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 of Final 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 with America'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 to America, 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 of
Do 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 of AARP
Bulletin.
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