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As his wife's caregiver, a doctor discovers what's missing at health care's core

Judith Graham, Kaiser Health News on

Published in Health & Fitness

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.

Although Kleinman's specialty is studying how patients experience illness, he wasn't prepared for the roller coaster of family caregiving. 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 backbone of the nation's long-term care system.

I spoke with Kleinman recently at a caregiving panel. His remarks below are edited for length and clarity.

 

-- About his book. "I wrote it for a specific reason. I had spent my whole career as an expert on care. I myself was a psychiatrist who worked with patients with chronic medical disorders, (such as) chronic pain, diabetes, heart disease, cancer. I thought I knew it all. A veil of ignorance was raised from my eyes by my experience as a primary family caregiver.

"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."

-- Daily responsibilities. "Let's say in the fifth year, what was it like? I would get Joan up around 6 a.m. and take her to the bathroom. I have to handle the toilet paper, wash her hands, dress her to work out, take her to the bath and bathe her.

"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.

...continued

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