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. What I came to realize over the course of that terrible decade was that the humbling work of care rewarded me even as it sustained Joan. To be present and focused every day, every hour, every minute, gave me a central purpose in living. It was my emotional and moral education.
I have come to understand care through this experience as well as those that reflect my half century as a health care practitioner, educator and researcher. And what I have come to see, as if a veil of ignorance had been stripped away from my eyes, is that care and caregiving are undergoing a profound crisis, a crisis that can be understood as an early sign of a dangerous yet near universal transformation in human experience and social institutions. What is most human—our vulnerability, our decency, indeed our very souls—is under great threat.
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