And it needs to be told. Our fear
may be worse than the disease itself. What a parent
has to gain from being cared for by her children may be obvious. But it’s less clear what the child has to gain. The truth? I learned that to stay and struggle through Alzheimer’s is to reap gifts that may not come any other way.
Dementia is on the rise in America. The Alzheimer’s Association claims that between 2000 and 2008 deaths from Alzheimer’s increased by 66% while every other major cause of death decreased. Dementia is the 6th leading cause of death in the United States. By 2050 the incidence of Alzheimer’s is expected to quadruple worldwide.
These facts have created an epidemic of terror. As a recent blog post on Psychology Today notes, only cancer causes more terror than Alzheimer’s among people who are over 55. (“Fear of Dementia,” Mario Garrett, May 11, 2013) As more seniors require increasing care, middle aged children threaten to abandon their parents, and parents consider suicide rather than living through dementia.
But I’m here to tell you that for caretakers, at least, there may be some other, relevant news to factor in. With my sister, I took care of our mother. I flew to Dallas some Thursday nights after work, renting a car after midnight to drive to my mother’s care facility. Sometimes I wondered why. What on earth made me juggle a marriage, children, work, and caring for my mother? Now, years later, I look back and know what I gained.
Amazingly, as I helped to care for my mother, I began to “get” even the most zany of her comments. In fact, her conversation sometimes seemed fresh and surprising. She was often funny, though I felt guilty about laughing. It dawned on me slowly that what she said wasn’t haphazard, though it sometimes appeared to be. As she aged she often referred to her earlier life. I had heard those stories. I knew them—the one about the fox stealing her mother’s hens, the one about doctors in surgery hurling instruments across the room, the one about the bull chasing her around the pasture. All her life my mother had sprinkled so much metaphor around her speech that my father often teased her about it. What she said became harder to decode. But because I knew her old stories, even at the end of her life, I could often guess what she meant.
But the most astonishing gift from those years was that I recovered my own past. I had never reflected much on my early life: I had forged a path straight through graduate school to a teaching job, which I combined with raising children, keeping house, and writing. I was always hurling myself into the future, creating new courses, writing in new genres, applying for grants, scanning the horizon. My past got crowded out.
And then I had to slow down to take care of Mother. As she lost her memory, I regained mine. Scenes from earlier years that I had entirely forgotten leapt back so forcefully that they almost seemed to be happening now. I began to understand my own story in a fresh way. I saw how I had defined myself against Mother, how hard I had to fight to get away from her, and what it had cost us both. This unexpected retrieval of my own memories became one of the most spectacular gifts of my life.
Yes, dementia is grim. No, I would not ask to live through that decade again. But I’m better for having taken care of my mother during Alzheimer’s and it just might be that other caretakers can say the same.
Jeanne Murray Walker is the author of THE GEOGRAPHY OF MEMORY: A Pilgrimage Through Alzheimer’s, which tells the story of caring for her mother during her last decade.
Find GEOGRAPHY at: http://amzn.to/1kHNpgN
Jeanne's web site: www.JeanneMurrayWalker.com