Advocating for her future self spurs thoughts

I received an interesting email from a reader named Dolores several months ago. She'd created a personal statement titled "Advocacy for My Future Self." Its purpose was to assist her family with end-of-life caregiving when the time came.

Her well-composed document became the topic of dinner-table conversations in our home for several days following, and her words prompted discussions my husband and I had never had before.

Dolores had posed requests of her family "gleaned from years of self-observation" that included thoughts about the critical role of activity to her well-being. She wisely said: Keep me active, "Create errands "¦ steps to keep me moving."

There were also reminders about the need for hydration but "nothing with caffeine." (Water: "1-3 quarts each day — less in winter, more in the heat of summer.")

Dolores cautioned, "Watch what else goes into my body," and offered a paragraph of detail about specific food and beverage items, which included nuts in her oatmeal and "hot honey-lemon water at bedtime with an occasional dab of vodka." She told her family that despite how frail she may seem at the end of her life, she hoped to play her harmonica on a daily basis. But she promised she would "limit it to no more than 10 minutes."

I met Dolores in person this week — she and her husband had just returned from a three-month sojourn in India instructing Hindi teachers how to relate to and educate autistic children. We had a lovely chat over decaffeinated tea — to which she added water. I do so wish I'd thought to ask her to play the harmonica for me.

With her permission, I share her story and am willing to link you with her directly if you wish to query her further about that statement of self-advocacy. She leaves for India again soon, so you may want to act quickly.

I use her story to make a larger point about end-of-life self-care and caregiving. A recently released study by the AARP Public Policy Institute is sobering; it speaks to the dramatically reduced supply of family caregivers in the future. These family caregivers have been the nation's "backbone of long-term care services and supports" and a key reason why fragile elders are able to remain in their own homes and communities.

The caregiver support ratio, which is the number of potential caregivers aged 45 to 64 for each person age 80 and older has been, up to now, more than seven potential caregivers to each person in the high-risk years of 80-plus. It will fall to less than three to one by 2050. With this dramatically shrinking availability of family caregivers, some form of institutional care may be our only option in the future, with all its associated costs for individual bank accounts and for the government as a whole.

Not good — on many levels. After all, who answers the question, "Where do you want to live at age 80?" with "Oh, I think I'd like to live in an institution."

If that is, indeed, where many of us end up, we will definitely want prepared statements of self-advocacy. We might even want to get them notarized.

Sharon Johnson is a retired Oregon State University associate professor emeritus. Reach her at

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