Memoir of Arthur Kleinam, MD with emphasis on the ten "terrible" years he provided care for his wife after she developed early onset dementia. He acknowledges the inadequacies of current long-term care and discusses what should be available. ( )

Arthur Kleinman is a psychiatrist and medical anthropologist. His book is mostly a memoir of the maturation of his soul and an encomium to his wife, Joan. In her late fifties, Joan developed a rare form of early-onset dementia that began by attacking her occipital lobe, her brain’s visual processing centre. Kleinman looked after her for close to a decade, almost to the time of her death. The book also provides a sense of the medical anthropological research Kleinman engaged in during his career, a tribute to his intellectual mentors, and an overview of his professional accomplishments: the academic programs he created, some of the ideas he generated around caregiving in medicine, and the books and articles he authored. Really, it is only in the seventh chapter (of the eleven in the book) that Kleinman begins his account of his experience caring for his increasingly visually and cognitively impaired wife.

The Soul of Care more or less begins at the beginning—that is, with Kleinman’s childhood. He writes that he knew little about his biological father, Nathan Spier. His mother fled the man when Arthur was only a year old. Spier had been involved in a shameful real-estate-related court scandal, which apparently led to a judge’s suicide. Kleinman’s mother ended up returning (with her son) to her parents’ comfortable Brooklyn home. In spite of his Jewish grandparents’ affluence, as a boy Kleinman preferred the company of the rough-and-tumble neighbourhood kids, many of them the sons of Irish and Italian immigrants. He was an aggressive kid, so much so that the local cops directed him to a police-sponsored boxing club, which would provide an outlet for his abundant, angry energy. Later, his mother remarried—to a “party animal” much like herself—and the family relocated elsewhere in the city, where Kleinman attended a different school which pushed academic achievement. He became a reader, an experience that opened up a new world for him. A son of privilege, Kleinman had few models for caregiving in childhood and youth. He notes that even now the moral, emotional, and caregiving qualities that are inculcated early in girls are slow to develop in boys.

Eager to escape the oppressive family expectation that he pursue the sort of professional career that would bring money and status, Kleinman left the East Coast for the West. He attended university and medical school in California, recognizing early on that he was interested in patients’ stories, their personal experiences of illness, and the way in which social and cultural factors affect how care is delivered and received. In his twenties, he met and married Joan Ryman, a linguistically and intellectually gifted young woman (from a middle-class Protestant Californian family), who was emotionally intelligent and socially adept. Both Kleinmans had an interest in the Far East; Joan eventually completed graduate studies in Chinese language and literature. They spent time conducting research in Taiwan and China, their children accompanying them. At one point, Arthur studied the ways in which China’s Cultural Revolution, a time of great political oppression when family and friends surveilled and reported on each other to the government, impacted mental health and the networks of caregiving in families. One of Kleinman’s observations about Chinese attitudes particularly interested me. In this culture, he writes, people hold the view “that we are not born fully human, that our humanity exists on a kind of spectrum or continuum. Thus, a baby is not a complete human being, and women occupy their own unique but inferior position on that spectrum.” To become fully human, people “need to cultivate their humanity over the course of a lifetime, an idea that fosters self-education and good habits.”

In the early sections of his book, Kleinman writes in a general way about Joan’s influence on his emotional development over the course of their marriage. He credits her for saving him many times— both physically and emotionally—with her care. For example, he returned from one research trip to China emaciated and debilitated by dysentery; Joan nursed him back to health. Other times, she provided him with the emotional support he required when his “overweening ambition” and professional responsibilities threatened to get the better of him psychologically. She ran the household, and for years Kleinman didn’t lift a finger to help out with the chores. From the sound of it, the Kleinmans’ was quite a traditional marriage. While he regarded his family life as “golden”, one can’t help but wonder if the talented Joan felt quite the same way.

Unfortunately, the author’s descriptions of his wife to this point in the book seem so idealized that Joan doesn’t seem quite real. He often writes about the emotional “learning” or “moral” understanding he gained from her, but he provides few specific examples of how this transpired. I really could not get a handle on who this woman was. However, the narrative changes when Kleinman begins discussing Joan’s diagnosis, decline, and the many years he spent caring for her. His descriptions become more concrete, richer in detail and anecdote.

Initially, Joan was a co-partner in her own care, in spite of her being visually impaired from the earliest stages of her disease. Formerly a competent, independent woman, she apologized often for the burden her illness placed on her husband. Soon after the diagnosis, she stated: “I will not linger. I will not die without dignity. You and Charlie [their primary care doctor at that time] will know how to bring it to an end. You must promise me. I need your promise.” Kleinman did not make that promise immediately; he made another: to care for his wife. For better or for worse, Joan did linger—for many years. Eventually, she would become hostile and aggressive, and she would be particularly intractable when she developed Capgras syndrome (a disorder in which people perceive those closest to them as imposters.)

Kleinman was determined to care for his wife from the moment she was diagnosed. Perhaps he was influenced by the Chinese ideas he’d studied for so many years. To the Chinese, love isn’t a feeling so much as a commitment; it consists not of words but of actions intended to strengthen ties. Certainly Kleinman viewed caring for Joan as a natural part of the commitment between them, as well as an expression of his gratitude to her. But I found myself thinking that such a decision involves a fine balance. How far should a person, who is also aging, push himself to provide care to a person who is losing herself and in time no longer even knows who her caregiver is. Is it worth it? Is it right? Is it okay to stop?

Kleinman charts the stages in Joan’s decline and his many adaptations to them. Because he continued to teach and perform academic work at Harvard (for both financial reasons and psychological health), it was necessary for him to hire a caregiver. Eventually, though, even that kind of professional help wasn’t enough. Joan’s condition had so deteriorated that Kleinman could adapt no further. Worn down and incapable of managing her increasingly extreme behaviour and destructive acts, he (and his adult children) had her committed to a nursing home for the last nine months of her life.

Kleinman states that it was his love for his wife that allowed him to serve as her prime caregiver for so many years. He believes that caregiving, though tremendously challenging, is an enriching and humanizing experience, and says he is a better man for it. I can’t say I am entirely convinced that caregiving always makes better people of us. The toll that it can take on the one who performs it (often an aging spouse) can be high—maybe too high. Dementia is relentless, and nothing the caregiver does can stop it. In the final stages, the patient doesn’t know herself or her family. Furthermore, she can be agitated, physically aggressive, and even violent—thrashing, striking out, delirious and screaming. This was increasingly the case with Joan. It is interesting to me that a much-loved nonhuman animal would not be allowed to continue in such a state. Veterinary medicine is responsive to signs that an animal is in inexorable decline with little quality of life, and euthanasia, heart-breaking as it is, is offered. Unfortunately, we do not widely extend this humane option to humans. Even raising the issue is thorny.

Kleinman does acknowledge that becoming a caregiver to a family member with whom one has had a fraught, dysfunctional relationship might not be feasible. He spends some time addressing the need for ethical, humane institutional care for patients with dementia and the foundational importance of care in society. He also laments, as many contemporary medical writers do, “the diminished place of caregiving in medicine”, the failure to see the whole person in the patient, not just the disease: For the physician, “Survival in the hospital and in whatever outside life you can manage depends on learning how to work the system by cutting corners, spending as little time as you can get away with in human interactions that can be emotionally and morally taxing.”

I expected to like Kleinman’s book more than I did. The blurb led me to anticipate a memoir more completely focused on his experience as his wife’s prime caregiver and a meditation on the moral and psychological aspects of that role. However, I first had to wade through quite a bit of dry, rambling, and sometimes jargon-filled material about the author’s intellectual education, or, as he describes it, the “nurtur[ing of] the more cerebral elements . . . [of his] being.” I did not find those sections interesting or particularly germane. Kleinman is a competent enough writer, but not a stellar one, and I sometimes found his prose dull, clunky, and confusing. I questioned his inclusion of some details pertaining to his professional life. My rating reflects these things. Even so, this book (which includes an excellent bibliography) offered me plenty of food for thought. ( )