One of the highlights of GIH's recent annual meeting was a session headlined by Steve McConnell of The Atlantic Philanthropies, Bruce Chernoff of The SCAN Foundation, and David Gould of The United Hospital Fund. GIH's CEO, Lauren LeRoy, moderated.
We were all in agreement that activated and mobilized caregivers would be a boon to efforts to change the way older adults are treated in the health care and long-term care systems. Widowed spouses, adult children, and friends -those unofficial, unpaid, and sometimes unrecognized caregivers who provide 70 percent of all care to older and dying individuals - can speak with authority about what needs improvement in the care of older adults and others with complex needs at the end of life.
When the caregiving experience is over and you can see it clearly in retrospect, as Steve McConnell observed, often you are not only terribly, terribly tired but also beset by guilt and uncertainty. (Did I do enough? Did I do the right things? Did I make the right choices?) Reflecting upon this, new to me, observation, I find that it feels truer and more powerful than I would have thought.
When my childless, unmarried Aunt Janet Langston developed brain cancer in 2001 and died the following year, I was the only family member on the East Coast with her. I did what I could, visiting her in the hospital and nursing home, and hassling with the insurance company, the hospice, our distant relatives, and her in-home aide.
I remember feeling totally helpless, when after all the treatment and rehab, she had actually gotten back home with hospice and private aides and we realized that she might not be able to stay at home because she was falling so often. It wasn't so much that they were worried she was going to hurt herself, but that because of her great weight, the aide always had to call the police to pick her up and they were getting tired of it. I suggested a lift or some other assistive device, but hospice and the private duty company denied that there was any such thing. Fortunately, the nun attached to my Aunt's parish was able to speak to the police and convince them to keep coming to give her a few more months at home before the progression of the disease took her back to a nursing home to die.
I can't say that I came out of the experience feeling empowered or activated. Quite the reverse, I don't feel particularly good about what I did and didn't do, and after speaking at the funeral, I was grateful that it was all over and happy enough to get back to my regular life.
Steve argued, however, that activism, even while caregiving, can actually help some caregivers cope with their experience. Advocacy as therapy was what they called it at the Alzheimer's Association, he says. If that's the case, let the therapy begin.