Jun 25, 2010

Caring for a Parent with Alzheimer's: A Labor of Love in the Golden Years

By Henry McCambridge

As children we learned to depend on our fathers to help feed us, bathe us, and keep us safe. Our dependence grew into trust, and with that trust we found a secure footing in the world. As Alzheimer’s disease has caused my own father to enter a second age of dependence, I find myself wondering where my own sense of trust and security will go now that the tables have turned.

Can he, the intimidating, sharp-tongued man I remember from childhood, really be the frail, confused person I see before me each morning? I wonder if it is difficult for him to trust his own child with his wellbeing as I once trusted him. These sad musings are cut short though, when I realize the question is moot; he rarely recognizes me now.

My father moved into the spare bedroom just a few months after we received the diagnosis of Alzheimer's Disease. We had suspected it for some time, but until the doctor's formal pronouncement, my wife and I allowed ourselves the luxury of hoping it was something less insidious. We told ourselves it was side effects from his heart medications, depression, fatigue, anything but Alzheimer's. Calls from concerned neighbors came in; he'd gotten lost in the halls of the apartment building he had lived in for 28 years. He burned his arm on a hot burner but couldn't recall how it happened. He was still driving, and we found ourselves jumping at every phone call, afraid to learn that he had accidentally hurt someone.

Denial has since been replaced with the every day reality of living with a parent who has the needs of a child. He gets disoriented several times each day, followed by bewildered crying or angry, frustrated outbursts. Bathing has become a ritual of belligerence on his part. Ever since my father struck my teenage son during one of these struggles, my son will have nothing to do with them. Alzheimer's has put an enormous strain on our relationship. I know that my son feels neglected, that this is unfair.

It is cheaper for me to stay home with Dad than to pay a caregiver. With the exception of one day a week, I am with him from sun up to sun down. When I need a few hours to run errands or just to catch my breath, I slip the pendant from his medical alarm around his neck, and slip out. Still, I have not yet gotten comfortable enough to venture more than a few miles from home. After a couple of hours, I begin to feel anxious, and race home to where he is endlessly rearranging knick knacks, or watching reruns on tv.

I care deeply about this body, this man that used to house the personality of my father. I feel tenderness toward him when he nearly recognizes me. "You look just like a boy I know from back home!" he'll exclaim jovially.

I try to get him to talk about his years in the Navy, since the old memories last the longest for Alzheimer's patients. I consider it a gift when he forgets that I am his son; he forgets to edit his stories down to the g-rated versions. I try to count my blessings, knowing I have had a glimpse into a facet of his life usually kept secret from children. He is happy then, the lines seeming to fall out of his face. The fire comes back into his voice and he is restored to his old self for a few moments. Too quickly, the moment is gone, and the confusion closes over his face once again, like a curtain. I miss him so much it aches.

I am thankful for the clarity this chapter in my father's life has given me. I can see the spirit of the man I grew up with more sharply now thanks to the contrasting visage of his mental decline. When it is hard, and I curse his need, it is this difficult gratitude that keeps me going gently forward with him.

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Original content Bob DeMarco the Alzheimer's Reading Room