Alzheimer's challenges family fabric


Years ago, as a young woman living on my own, I expected some day to get a phone call telling me that my father had had a heart attack or a stroke. I dreaded that call. It never came.

What came instead was Alzheimer's disease. A far more dreadful visitor, it has imposed on my father a steady erosion of all he has been, and taken away a proud identity.

My father, the wise man, the leader, the family caretaker, the mensch, now watches the world with a look of bewilderment that breaks my heart.

We, his family, have been diminished along with him through constant and many times unbearable demands that cause us to variously reveal inner resources we didn't know we had, or selfish wishes we struggle to conceal.

But what makes it truly tragic is that he needs a kind of care that we, his family, can no longer give him at home.

We have tried to cope. My mother, his wife of some 55 years, has lived the "36-hour day" that the caregiver of a dementia patient must endure, and she has endured it far beyond the time when her own advanced age and frail health could support such demands.

I, his only child living nearby, negotiated the maze of bureaucracies to search for solutions, offering respite, visits, time and encouragement.

We kept him at home with my mother long beyond the time when doctors and social workers told us he was ready for nursing home care. And, as often happens, when my mother felt she was beyond the point of coping another minute, when her desperation became a daily litany, we were told we had to wait for a bed to become available -- wait for someone else's father to die.

And now it has happened. A few weeks ago, while at work, I received a call from the social worker at the nursing home. As soon as she identified herself, I knew my life was about to change forever. I was about to become a daughter who put her father in a nursing home. I was about to see my family break apart.

We did not arrive at this solution easily. There have been doctors, social workers, assisted living, day care programs, companions, all patched together at various stages to keep the inevitable at bay. But ultimately, the nursing home seemed the only solution that could protect my father, and save my mother.

And I don't even know if it will do either one. The process of adjustment these past weeks -- both his and ours -- has been more difficult than I imagined. People tell me it will take time, but I can't imagine I will ever adjust to the look on my father's face when he asks me why he is there.

And I think, there must be a better way. Families shouldn't have to face this. And I don't know what the solution is. I don't even know what I'm asking for: just, I suppose, to be able to take care of my father, and feel good about it; to see that look of bewilderment replaced by a smile.

Phyllis Holtzman is an employee of University Relations.

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Originally published on April 2, 1998