September 19, 2019
Arthur Kleinman, MD, is the author of The Soul of Care: The Moral Education of a Husband and a Doctor. He is one of the most renowned and influential scholars and writers on psychiatry, anthropology, global health, and cultural issues in medicine. Educated at Stanford University and Stanford Medical School, he has taught at Harvard for over forty years. He is currently professor of psychiatry and of medical anthropology at Harvard Medical School and Esther and Sidney Rabb Professor of Anthropology in Harvard's Faculty of Arts and Sciences.
“Get out! Get out!”
My wife, Joan, having just woken up, was screaming, and hitting out wildly at the stranger in her bed. She was in a panic, her body shaking with fright. “Get away from here. Get out!”
The man she perceived as a stranger was me, her husband of more than forty years. Joan was eight years into the destructive course of atypical early-onset Alzheimer’s disease, a horrific disorder that ravaged her, leaving her blind and with serious dementia. At that moment, she was experiencing something called Capgras Syndrome, in which patients become deluded that those close to them and their home as well are impostors.
Two years later, the disease would take Joan’s life. Through her long illness, I was Joan’s primary family-carer. I had devoted my professional life as a psychiatrist and medical anthropologist to studying, teaching and practicing care for chronic conditions, including dementia.
I should have been able to handle this outburst, just as I had to respond to all the other consequences of Joan’s Alzheimer’s disease, from agitation and memory loss to depression and escalating disability. But this episode left me feeling broken and helpless. I struggled through this episode, like so many others, and endured a decade of care, driven on by my abiding love for Joan and by her own heroic efforts to keep our relationship alive and hold our family together.