Caring for someone with a serious illness stretches people spiritually and emotionally, often beyond what they might have thought possible.
Dr. Arthur Kleinman, a professor of psychiatry and anthropology at Harvard University, calls this “enduring the unendurable” in his recently published book, “The Soul of Care: The Moral Education of a Husband and a Doctor.”
The book describes Kleinman’s awakening to the realities of caregiving when his beloved wife, Joan, was diagnosed with a rare form of early Alzheimer’s disease that causes blindness as well as cognitive deterioration.
Kleinman wasn’t prepared for the roller coaster of caregiving even though his specialty is studying how patients experience illness. Each time he adapted to Joan’s changing condition, another setback would occur, setting off new crises and fueling uncertainty and stress.
During 11 years of caregiving until Joan’s death in 2011, Kleinman learned that no one who goes through this emerges unchanged. He became less self-centered, more compassionate, and more aware of how the health care system fails to support family caregivers, the very people that are the backbone of the nation’s long-term care system.
“What is that veil of ignorance about? It’s about recognizing just how difficult family care is for [people with] dementia and, not just dementia, but many other problems.”
“I would shampoo her hair, dry her, pick out her clothes [for the day]. After that, I would prepare breakfast. As she got increasingly agitated, [that] became difficult because I had to sometimes hold her hands [to] keep her from throwing things or getting up and hurting herself. Because she was blind, she couldn’t see where she was. And then I would help her eat—usually, at the end, feeding her—and then take her to a room where we would sit and listen quietly to music.
“I discovered early on that the ritualization of acts of caring—the dressing, bathing, all these things—is a way of habit formation that keeps you going.”
“[Pay family members for caregiving] and you’ll see more men do it. Go to Australia, for example, where there’s very good compensation for care, and you’re astonished at the number of men who are caring for children, who are caring for elderly, and the like.”
“So, I had a great system of care around me, but I [also] needed a home health aide to [help with Joan and] keep myself going. I found an Irish woman … and she was fabulous.”
“When people ask ‘Why do you do [this]?’ the answer of most family caregivers I’ve spoken to is ‘Well, it was there to do. It’s got to be done, [so] you do it.’”
“We endure, we learn how to endure, how to keep going. We’re marked, we’re injured, we’re wounded. We’re changed … [in] my case, for the better. If you had known me before my 11 years of care, you wouldn’t recognize me today. I was your classical hard-driving Harvard professor … as tough as any other professor at Harvard Medical School.
“I’ve redeemed myself through this experience, in a way.”
“Do you know not a single one of the senior neurologists I went to with Joan, who wanted to do everything diagnostically, made the recommendation ‘You want to think about a home health aide now, even though you don’t need it right now. You have to look into how you’re going to reconfigure your house [for] someone who’s both blind and with dementia. [Or] a social worker is a great navigator of what the health care system is about. You want to take advantage of that.’
“So, this is where I believe that our whole health care system has got to be rethought, from the bottom up with attention to care at its core.”