July 3rd, 2009
Call it the generational vise: canceling Father’s Day with my fast-declining 93-year-old dad because my 11-year-old came down with the flu. Stressful, definitely. Heart-wrenching, yes. Welcome? Of course. Despite all the juggling and hard choices that have to be made about competing demands for care, I’d rather be stuck in this vise than face the void of the alternative.
But it sure isn’t easy. “Caring for an aging and frail parent or disabled relative may be the hardest thing you’ll ever do in your life,” says Howard Gleckman, author of the newly published Caring for Our Parents: Inspiring Stories of Families Seeking New Solutions to America’s Most Urgent Health Crisis. “But it can also be the most rewarding.” Gleckman, a senior research associate at the Urban Institute and former BusinessWeek senior correspondent, talks about the “silent society” of some 44 million Americans now caring for some 10 million elderly and disabled friends and relatives.
Our family is now a member of that society. Since September I’ve been commuting by car or plane at least once a month to see my ailing father 700 miles away as my brother, mother, and I face end-of-life issues head-on: Through episodes ranging from dehydration to surgery (at his request) to replace a broken hip joint so he wouldn’t be bedridden, my father has defied the odds and tenaciously journeyed through his 62rd year of marriage. Each crisis has weakened him, yet with his humor, logic, and longer-term memory mostly intact, he remains at core the kind-hearted man who raised me.
I consider our family to be among the fortunate: Years ago my father, a white-collar engineer, ensured that his wise investments would allow my parents to spend their later years in a highly rated, soup-to-nuts retirement community. But smart planning still doesn’t prepare a family for the reality of elder care. Decisions made long ago about interventions are no longer abstract—and are revised (no, now, to CPR; yes to antibiotics). Costs that can be pared (a private or shared bathroom?) are weighed; quality of life decisions often trump pocketbook concerns, at least for now. Even a caring staff seasoned in end-of-life care —doctors, nurses, chaplains, social workers, medical assistants—can’t predict how each individual will slowly fail.
Meanwhile, as President Obama takes the lead in an historic debate about reforming health care, questions abound about end-of-life care and its demands on caregivers and resources. Warning that “the weight of 77 million aging Baby Boomers will devastate our nation’s already fragile system for funding this critical day-to-day assistance,” Gleckman provides ideas about how to repair the safety net essential to the nation’s aged and disabled, as well as resources. Organizations like the International Longevity Center take on such notions that putting limits on health care for the very old would save Medicare significant amounts of money. “Limiting acute care for the very old at the end of life would save only a small fraction of the nation’s total health bill,” said the center in a study debunking financial myths about health care for older adults.
Human dignity has no expiration date. That much has become clear to me as I sit in my father’s skilled nursing dining room while policy wonks in Washington debate their abstract questions. To outsiders, the bibbed, napping diners—many are former professionals—may seem lost to life as we know it. Spend meals with them, though, and the small gestures of pride (“Did I spill that?”), compassion (a resident helping another with her wheelchair), and companionship among the residents gently tug you into a world where time is irrelevant and human connections precious. My brother, who lives nearby and visits often, and I slip into the elder zone with ease. Using Styrofoam pool noodles, he engages in mock swords fights with our wheelchair-bound dad—at least for the few minutes that Dad has the strength to play the game.
And what about the generational squeeze? I find habits from not-too-distant child raising come back quickly, such as this past weekend when I was able to reschedule my visit. Singing “Hush Little Baby,” I massaged my father’s thin shoulders as he soaked up the sun on a patio. At lunch as I gently suggested he eat a few more morsels, I ran a mental search of feeding strategies (and rejected “open wide, here comes the airplane!”). But there’s no greater evidence of how welcome this squeeze is than seeing my dad’s thin face, most often nodding these days with his eyes closed, lift up and brighten with a wide smile when he hears my 11-year-old on the phone. “Hello,” he says in a voice muffled with age but suddenly stronger, “And how is my grandson?”
Reader, are you a member of that “silent society” of caregivers? And do you have advice about coping with elder care as well as the generational squeeze?
For information about long-distant caregiving, see the Web site of Caring from a Distance. “Whether you live across-the-world or an hour away,” the site says, “you and your family face special challenges. Where can you find the local resources they require? How can you, family and friends communicate in an emergency? What can you do to help when you visit?” CFAD provides links to information and services.
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