My daughter joked the other day that I’d better be nice, because she’s probably going to be the one changing my diapers when I get old.
That “getting old” thing is a subject we don’t talk about too much, because I am only in my 50s and am a very independent type of person. So was my mom and we all remember vividly my mother’s journey through Alzheimer’s and how dependent she became at the end of her life.
My father was intellectually intact at the end of his life. I have her sense of humor and his empathic nature. Who knows which of them my later years physically might favor.
I am also a realist, and the concept of needing some kind of late-life care no longer seems so far in the future that I don’t have to give it any thought.
I have been having those conversations with my daughters in easy snippets, a little here and there for years, although they are only teenagers now. I’d like my end-of-life wishes to be part of the family conversation, familiar and comfortable, like tales of the neighborhood animal circus my mother had when she was a little girl. We all know that story well. The time will very likely come when they need to know my wishes. I’d just as soon it is not a traumatic discussion or, worse, subject to debate. Like most people, I want to manage my own affairs and be independent for every second that it is possible.
Should I become ill or disabled, mine will not be a one-size-fits-all set of requests.
If I face an acute illness that’s apt to take my life fairly quickly, I think my preferences reflect what I’ve been told is close to consensus in the United States. I would prefer hospice care and the ability to die in my own home, three cats vying for my attention while the dog snoozes at my feet. I’ll happily skip the complications and delays I might find in a hospital.
Should my future include dementia, I have told them I’d like just the opposite. I want them to beat a trail to the nearest well-managed long-term-care facility and see if it will have me.
We’ve talked, too, about the fact that not everything at the end of life goes smoothly. That point was re-emphasized recently as I read and then wrote a review of Katy Butler’s “Knocking on Heaven’s Door,” which is a guide not only to what can be done in pursuit of the coveted “good death,” but also a look at the curves the winding-down process can throw at the most well-intentioned people.
When her dad was suffering from a hernia that needed to be repaired, the doctor advised implantation of a pacemaker to bolster his too-slow heart rate. It made so much sense, until he became increasingly ill and had dementia and that pacemaker just kept plugging along.
As my mother became increasingly lost and unhappy in the final stages of Alzheimer’s, I remember without shame wishing that we had not gotten her a pneumonia shot. For the first time, I understood the old saying that pneumonia is a frail old person’s friend.
The biggest point I’ve tried to make with my children is very simple. Since the future is uncharted territory, they are to cut themselves a great deal of slack. I was well-educated on end-of-life issues when my mom was dying. Still, I regret some of the choices we made. And I’ve learned a lot since then which might have changed some of those decisions, if I could do it over.
I can’t. If the girls are kind to each other and to me, they work together and do the best they can, I figure things will work out well. They know me and my thinking on this issue.
We’re already halfway there in the quest for a good death.
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