A moving memoir and an extraordinary love story that shows how an expert physician became a family caregiver and learned why care is so central to all our lives and yet is at risk in today's world.
When Dr. Arthur Kleinman, an eminent Harvard psychiatrist and social anthropologist, began caring for his wife, Joan, after she was diagnosed with early-onset Alzheimer's disease, he found just how far the act of caregiving extended beyond the boundaries of medicine. In The Soul of Care: The Moral Education of a Husband and a Doctor, Kleinman delivers a deeply humane and inspiring story of his life in medicine and his marriage to Joan, and he describes the practical, emotional and moral aspects of caretaking. He also writes about the problems our society faces as medical technology advances and the cost of health care soars but caring for patients no longer seems important.
Caregiving is long, hard, unglamorous work--at moments joyous, more often tedious, sometimes agonizing, but it is always rich in meaning. In the face of our current political indifference and the challenge to the health care system, he emphasizes how we must ask uncomfortable questions of ourselves, and of our doctors. To give care, to be "present" for someone who needs us, and to feel and show kindness are deep emotional and moral experiences, enactments of our core values. The practice of caregiving teaches us what is most important in life, and reveals the very heart of what it is to be human.
Psychiatrist and medical anthropologist Kleinman sensitively weaves the story of his late wife Joan's early-onset Alzheimer's disease with frank commentary on the decay of personalized patient care in this clear-eyed memoir. As a medical student in the 1960s, Kleinman was shocked by the lack of empathy patients received ("It was as if I could see care disappearing before my eyes"). Working alongside Joan in the 1970s, Kleinman studied Chinese medicine and caregiving across cultures, and furthered his work in the then-nascent field of medical anthropology. When Joan became ill with Alzheimer's in her 50s, he became a caregiver himself and turned to his research for inspiration: "Our Chinese cultural socialization intensified our sense of the two of us as one unit equally responsible for each other." He writes tenderly of Joan's decline, during which time they experienced much of the same substandard treatment of patients that Kleinman had studied and criticized, which only intensified Kleinman's commitment to holistic care; after Joan's death in 2011, Kleinman continued his fight for a caregiving curriculum in medical schools. Kleinman's accessible discussion of patient care should appeal to a broad range of readers.