Dementia does not care who you are. From President Ronald Reagan to your Aunt Tillie, anyone can fall prey to this insidious disease. Alzheimer’s gradually overrides memory, personality, and emotions.
In his book, The Soul of Care – The Moral Education of a Husband and a Doctor, Arthur Kleinman spares nothing as he describes his decade long experiences as a psychiatrist and husband while his brilliant, talented wife, Joan, succumbed to Alzheimer’s.
Kleinman is, according to his bio on the book jacket, “one of the most renowned and influential scholars and writers on psychiatry, anthropology, global health, and cultural and humanistic issues in medicine.”  Consequently, the first half of the book examines the state of medical care and education in America.
Dehumanizing Medical Education
Like most interns, Kleinman entered the medical profession because he wanted to help people. The ideal of caring gets lost in the pressure cooker of residency experience, leaving many disillusioned. However, rather than let his ideals take a back seat, Kleinman explored, and later, taught, about the ways to maintain caring, even while health care costs escalate and efficiency is the name of the game.
At first, Kleinman adjusted his work schedule so he could remain primary caregiver for his wife in their home. At the beginning stages, Joan’s appreciative, encouraging, “You can do it, Arthur,” fueled his days. Later, he continued to meet his professional obligations with the help of a devoted health care aide. However, one day he could no longer communicate with Joan as she writhed on the floor in a state of agitation. He could only watch, helplessly sliding to the floor himself, to wait until she exhausted herself.
That was the turning point. Joan was hospitalized and put on a new medication regime. She then transferred to a nursing facility with “an experienced and dedicated director and a staff who conveyed kindness, warmth, and humane nursing skills.” Sadly, he added, “I had to use all my professional connections to get her admitted there.”
I hope that soon this kind of facility will become the norm for all potential admissions. Here in Rochester, I do see positive changes. Physicians are beginning to better differentiate various forms of dementia. Delirium, depression and dementia can look very much alike, but may require different treatment. Also, some facilities are providing a more nurturing, inclusive, environment for those with dementia.
Understandably, many caregivers refuse to consider nursing home placement. In Dr. Kleinman’s case, even with his education and connections, he realized he could no longer care for his wife safely or adequately. Her needs exceeded his resources. This is a heartbreaking juncture in the Alzheimer’s journey. Meanwhile, the Alzheimer’s Association offers a range of assistance for caregivers as they care for loved ones with any kind of dementia, not just Alzheimer’s. https://alz.org/help-support
 Arthur Kleinman, The Soul of Care, Viking Press, copyright © 2019