caring for parent with alzheimer's disease

Illustration: Julien Pacaud

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Quick Fixes
My two teenagers are under strict instructions to honor their short, sweet time on this planet. This is no request—it's one of my few nonnegotiable orders. After all the work I've done to nudge them toward the world, I want them to charge forth unencumbered. I want them to embrace the fullest path available to them. And I'm quite sure that does not involve caring for anyone out of obligation, including me.

Minding my father these last 13 years as he succumbs to Alzheimer's disease has made me fierce about our ethical duty when it comes to end-of-life decisions. About 15 years ago, in his late 60s, my father had heart trouble. The operation, care, and pacemaker that prevented the problem from being fatal—well, they bring up some hard questions. Should he have died then? While so young and still healthy? The answer, in my mind, perhaps unbelievably, is yes. My father was a humble and gracious man, but long diseases, particularly Alzheimer's, make a tyrant out of anyone: He cannot be left alone, even for a moment, and there is no give-and-take, only constant taking. That's the way of things, and it certainly isn't his fault, but it doesn't make the situation any more pleasant. He does not remember how to buckle a seat belt, how to hold a sandwich, or that I am his daughter. I'm certain that if he'd been able to see the future, he would've wanted to die naturally, too, because caring for him has come at great cost to many. If I'm honest, I'd admit that rarely, if ever, are the few moments of connection we share worth the hours taken from my own children, from my own dreams, health, life.

Our time together has largely been spent wandering his Colorado ranch, where we spoke of his disease when he was able, lapsed into silence once he was not. Bald eagles and horses and happiness and bitterness. Now all of this has dissolved into acceptance. Our walks have made me mindful of the brevity of time—and how we ask others to use theirs.

Before my children get much older, I hope this country's conversation drastically changes. That we increasingly use phrases like natural death, refusal of medical procedures, and assisted suicide, that we say no to some life-prolonging measures and say yes to the art of dying. This is the final lesson I've learned from my father.

It's fall now, so the geese will fly over, the last hay will be cut, the horses will gallop in the cooler weather. It's been years of such cycles. I will continue to pave my way toward a good death. If it's in my power, I will do practical things: check into long-term care before I need it, make discerning decisions about lifesaving treatments, fill out forms both legal and personal. I hope to heed the prompting of my body, to go gracefully, to go young if need be, to set a good example, to set limits on my longevity.

Will I get what I want? Hard to say. One thing I know is that when I lose my resolve, I will close my eyes and think of my daughter's sparkling blue eyes and her hopes for the world; of the tilt of my son's head as he discusses philosophy and the elements of a life well lived. There, I am quite sure, I will find the necessary courage.

— Laura Pritchett