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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 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.


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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 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.

30 review for The Soul of Care: The Moral Education of a Husband and a Doctor

  1. 4 out of 5

    Canadian Reader

    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 research Kleinman engaged in during his career, a tribute to his intell 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 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 knows 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 in tow) 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 quite make that promise; 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’s determination to act as prime caregiver to his wife was perhaps 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 her husband 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 care for her 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.

  2. 4 out of 5

    Alexios Shaw

    This was a flawed but beautiful and useful book about the lifelong moral education of a psychiatrist, focusing on his 40 year relationship with his wife, in particular her last decade during which she was diagnosed and slowly died of posterior cortical atrophy (if I am correctly diagnosing the disease; I'm not sure the author actually referred to it by that name, but described it as a variant of early Alzheimer's). The author had a very interesting career as a psychiatrist but also an anthropolo This was a flawed but beautiful and useful book about the lifelong moral education of a psychiatrist, focusing on his 40 year relationship with his wife, in particular her last decade during which she was diagnosed and slowly died of posterior cortical atrophy (if I am correctly diagnosing the disease; I'm not sure the author actually referred to it by that name, but described it as a variant of early Alzheimer's). The author had a very interesting career as a psychiatrist but also an anthropologist, with experience living and working in China over several decades. The book he wrote weaves together quite a few things: - personal memoir of his childhood - memoir of his marriage, from the early romance to childrearing / middle age, and ultimately to the premature end and anguish of caretaking with Alzheimer's - manifesto about "care" in our society and care the healthcare system - overview of his professional life These four threads are not always interwoven very elegantly, and varied significantly in their quality. Namely, when the author focused on his personal life, he was honest, cutting and decent. I found his portrayal of his Brooklyn upbringing in the 1940s and 1950s smart and honest. I was moved by his descriptions of his wife and his love for her. I thought the book veered into a bit of pomp and inadequate detail in the lengthy descriptions of absence of caring and caretaking in US society and US healthcare. For an anthropologist, I thought the descriptions of our failing, inhumane healthcare system were way too anecdotal, blaming individual caretakers for their apathy, and, I suppose, heartless administrators and the profit motive, without really describing broader social, cultural, economic or political causes of what he experienced. There was also a bit too much detail about his own professional life, which was not particularly interesting. I am being a bit of a pedant because I personally found the book moving and useful. I read it specifically because I have a family member with the same neurodegenerative illness as the author's wife. I think reading it will help me reframe some of the less noble attitudes I have found myself adopting regarding the illness in my family. In short, I would recommend this book for anyone who is in a caretaking role, whether they sought it out or not. If this is not really on your radar, I might go elsewhere (eg. On Being Mortal) for the general themes of the failings of the US healthcare system, or elsewhere for personal memoir.

  3. 4 out of 5

    Elizabeth Pyjov

    I enjoyed this book. ‘’I found that care is a human development process’’ (3). ‘’Caregiving and receiving is a gift-sharing process in which we give and receive attention, affirmation, practical assurance, emotional support, moral solidarity, and abiding meaning that is complicated and incomplete. Care is action, practice, performance. Often it is a reaction. A constant reaction to the needs of others and ourselves under different conditions and in different contexts. Care is accompanying someone I enjoyed this book. ‘’I found that care is a human development process’’ (3). ‘’Caregiving and receiving is a gift-sharing process in which we give and receive attention, affirmation, practical assurance, emotional support, moral solidarity, and abiding meaning that is complicated and incomplete. Care is action, practice, performance. Often it is a reaction. A constant reaction to the needs of others and ourselves under different conditions and in different contexts. Care is accompanying someone through their experience of alarm and injury. It is assisting, protecting, thinking ahead to prevent further difficulty’’ (3) ‘’Care is also about vital presence — the liveliness and fullness of being — of both the caregiver and the care recipient. Acts of caring call that presence out from within us... I learned that caregiving entails moments of terror and panic, of self-doubt and hopelessness— but also moments of deep human connection, of honesty and revelation, of purpose and gratification’’ (3). ‘’Carefiving is perhaps the most ubiquitous activity of human beings, and it can be the most demanding, at times discouraging one. It is also the existential activity through which we most fully realize our humanity. In the humblest moments of caring ... we may body the finest versions of ourselves. It can offer redemption to the caregiver and person to whom he is giving care. Care can offer wisdom for the art of living’’ (3-4). ‘’Caregiving is hard, sometimes tedious, unglamorous work, but it resonates with emotional, moral, and even religious significance’’ (4). ‘’Care is the human glue that holds together families, communities, and societies’’ (4). ‘’Care offers an alternative story of how we live and who we are. But it is being silenced and diminished in value, in the United States and around the world, sacrificed on the altar of economy and efficiency, demanding more and more of families and healthcare professionals with fewer and fewer resources, and threatening to displace meaning in healthcare’’ (4) ‘The moral language of human experience, of people’s suffering and healing— the bedrock of our common existence— is being stifled, and at worst will be lost’’ (4-5). ‘’[grandfather] he didn’t express his move in words but in deeds’’ (8). ‘’But there was a kind of incipient care among us that held fast despite the otherwise brutal atmosphere of carelessness and violence. We shared a local world, and knew it, and we were learning how to care for one another’’ (14). ‘’I was furnishing the soul of a youngster who would come to the understanding that was what was missing in the world was care for ordinary people’’ (14) ‘they responsibility we have to honor history and bear witness to human suffering’’ (24). ‘I entered early adulthood having not yet learned to care for myself and for others, that I was careless and simply expected to be cared for, that I had only partially reformed myself, and that even though I read and wrote about care, I had not yet practiced caregiving, not in the family, not even in the medical profession’’ (24). Dr. Ben referred to ‘’the ability to draw vitality and healing power out of the patient’s inner self’’ (26). ‘’Then one day I broke through, almost by accident. I asked her to explain to me how she could tolerate the situation she was in, each and every day. For the first time, she stopped screaming and spoke directly to me... what she wanted from me was intense listening, and for me to speak to her with the same directness with which she so courageously spoke to me’’ (28). ‘’Even when patients are in crisis — perhaps especially when they are in crisis — you can talk with them about what matters most in their lives, as revealed in their response to illness and treatment. It isn’t easy, but you can build a relationship of emotional and moral resonance that brings both the doctor and the patient (and often the family as well) to the heart of care’’ (28 - 29). ‘’Care was equally about sharing and witnessing that lived experience of pain and suffering, the victories and disappointments that comprise the flow of illness and treatment’’ (29). ‘’I was beginning to understand how the ability to enter in and work through ordinary experience itself opened a window on life and it’s meanings. And how the tone of a conversation, if one worked hard enough to hear it, could be part of care’’ (30). ‘’When I explained you her that it was our final session, because I was rotating to another clinical specialty, she cried and whispered that our sessions had helped her to feel alive and both physically and ‘spiritually’ better. I had discovered that meanings could heal...’’ (30). ‘’The lesson was harsh. I had foolishly tried to impose the idea of care from the outside, rather than connecting with the inner emotional lives of the recipients of care by just being there with them in their tough daily experience and struggling through the work with them’’ (34). According to Kleinman, the Golden Rule does not work. We should not care for others as we would want to be cared for. We should care for others as they need to be cared for. According to Kleinman, ‘’The moral as well as the practical wisdom is that caregiving must be driven by the deepest needs of those cared for, care recipients — their pain, their anguish, their fears.’’ Kleinman notes that being a doctor can result in a kind of LACK of care. Doctors as they become professionals can stop seeing the patient as fully human. ‘’But as my training progressed, I couldn’t help feeling that I was losing touch with the sense of awe that had filled me when I held the hand of the little burn patient or spoke with the elderly woman whose life has been ruined by syphilis. I could understand that a certain professional distance was a kind of doctor’s survival technique, useful for doing demanding clinical work at a high level of expertise over a long period of time. But that distancing also represented a kind of estrangement, an objectification that was neither necessary nor good. I had not gone into medicine so that I could turn away from the innermost feelings of care’’ (37) ‘I stopped fighting my natural instinct to reject bureaucratic indifference, professional cynicism, and self-interest. I did not want my needs as a physician in practice ever to count for more than that of my patients’’ (38). ‘’...shockingly, first-year students are better at psychosocial, emotional, and human aspects of taking the patients’ medical history [than final-year cohorts of medical students]’’ (38). ‘’At one point, I considered going into surgery. But I was most attracted to primary care internal medicine because it would make me focus on the care of patients with chronic medical conditions. That care would require getting to know patients as human beings, coming to an understanding of how their local worlds, their lives and environments, influenced the diseases and treatments, and helping them manage their conditions so that they might be able to function and feel a sense of mastery, however limited. This, I had learned, can make the critical difference in living a satisfying life’’ (38). ‘’We students were to be trained primarily in science, and only secondarily in the art of care’’ (39). ‘’If care depends on the deep interaction between the caregiver and the patient, don’t we need to understand the personal and social factors affecting those on either side of the relationship’’ (39). Judgments and perceptions of how to best care for someone could be limiting: ‘An elderly Portuguese woman who was dying of end-stage multiple sclerosis seemed unnaturally and unreasonably happy at the end of her life... it seemed clear enough to me that she was joyful about the prospect of meeting God very soon’’ (41). ‘If was upset by the stereotyping and stigmatizing by the medical staff of men who lived with war injuries and were pursuing such exercise and pleasure as they could manage’’ (41). ‘’Joan Kleinman healed me— slowly, but progressively, over decades. She trained me to care, be careful, and give care. The consequences of the transformation in me was an expansive and inclusive happiness. I came to regard my family life as golden. The times were joyful and we looked ahead with great expectations’’ (56) ‘’[about a woman with cancer confined to a cage] it was my most direct confrontation to date with the idea that the caregiving response itself could dehumanize a person in the throes I’d serious suffering’’ (65). ‘’in cultures across the world, families overwhelmingly shoulder the burden of caregiving’’ (69). ‘’As I dug deeper into how illness experience differed depending on the healing practice, I found that the biomedical physicians generally spent less time with patients and tended to engage only on the most superficial and mechanical level with those patients. They provided minimal explanations of diagnoses and treatments and didn’t want to answer a lot of questions. And they also showed little respect for patient preferences and the troubles experienced by family carers. In contrast, the relationships that patients and families had with traditional Chinese medical practitioners were longer and warmer, and imbued with a spirit of mutual respect. These practitioners shared popular ideas about foods as medicine, traditional exercises, and therapeutic herbs and teas with their patients and their families, and related them to qi, yin/yang, and other orienting cultural principles. The family context of care, not surprisingly, was the most intimate of all, and alive with presence and shared values’’ (69). About care being different in Taiwan: ‘’You did not say ‘I love you.’ Rather, you showed love in the meals you prepared, the careers you enabled, the travel you arranged, or the tutorials you financed. The idea of love itself was not about a spontaneous feeling, the fleeting, ephemeral nature of which could not be trusted. Love and care consisted instead of a long-term commitment to strengthening ties, worrying about the family’s future, and tending to its members as assiduously as you would prune bonsai trees or feed the koi in the house’s small pond. Indeed, love was virtually synonymous with care, and such care made you and the family more human’’ (73). ‘’In a closely connected social circle, that meant being worthy of care oneself, and at the same time responsible for caring for the others around you. One did not speak of care, just as one did not speak of love, but practiced it as an everyday ideal worth pain and effort, loyalty and courage’’ (73). ‘’Their presence — the human concern, warmth, and support — sustained me and gave me hope, even when I had lost confidence in my body and, demoralized, almost gave up... My Chinese colleagues taught me that the moral responsibility to give care was more powerful and permanent than the sometimes transient circumstances of our lives’’ (74). Abut Joan: ‘’But much of the time they (like me) just wanted to sit with her and soak up the love that washed over them in the form of care’’ (76). ‘’We learned that care can be given with presence and love in spite of hatred. But also that care can be refused in a relationship that superficially seems loving’’ (K79). About China: ‘’In the midst of dizzying economic changes and enhanced political repression of dissenters, where cynicism has flourished and personal values are often suspect, caregiving may we’ll be the only truly liberating activity. Individuals and families can commit to caregiving practiced that carry moral weight’! (82). ‘’Indeed, care would become the path to prevention’’ (90). ‘’your very presence in and of itself can be a powerful source of care’’ (93). ‘’my building sense that something was terribly wrong with how physicians, and especially high-technology-oriented specialists, practiced. It was as if I could see care disappearing before my very eyes’’ (99). ‘To begin with, the practice of medicine was only one example of the far broader practice of care. Second, care itself was based on what truly mattered in the illness and treatment experience for patients and practitioners. And what mattered differed for professional, personal, and social reasons’’ (101). ‘they bureaucratization of healthcare had led to a serious loss of caring and caregiving among professionals’’ (111). Once family and physician acknowledged Linda’s condition, the condition subsided. ‘’Regardless of what the biomedical problem turned out to be, Linda suffered from an absence of caregiving. Care was the answer’’ (118). ‘They greet problem is chronic pain management, as I have indicated, is how the caregiving relationship contributed to the patient’s disability’’ (119). ‘’a clinician needs to address the caregiving relationship as a critical part of the illness experience, in order to help patients and families transform both’’ (120). ‘’Care— a process that requires presence, openness, listening, doing, enduring, and the cherishing of people and memories — ripples out to family and friends, colleagues and communities. The bittersweet exercise of so many deeply human qualities echoes through generations. It is an invisible glue that holds society together. Countering the forces of division and destruction that are also core to our human way of being, caregiving does good in the world. And doing good... is about all we can hope for to ease our collective way forward’’ (236). ‘The problem ... is not that we fail to quantify these experiences [of care], but that they cannot be quantified, because they are essential human interactions, the soul of what health care is’’ (238). Kleinman advocates for ‘’the practical social logic and political wisdom of a society that simply values care for the other, including social care, as the core practice that enables our communities to thrive’’ (239). ‘’care is about doing good in the world, and that doing good for others is a way if doing good for ourselves’’ (239). Kleinman compares those who like him are committed to longterm care of a loved as having experienced ‘the secular equivalent of the biblical appeal: Here I am. I am ready’’ (243). ‘’soul of care pivots to care of the soul. The active, direct doing of care— the caring in caregiving if you will— works on and through relationships to reshape the self’’ (243 - 244). ‘’Caring involves work on the soul: that of the caregiver and also the receiver of care. This is what I have alluded to as cultivation of the self and one’s relationships. Cultivation, here, represents work. And that work, so much of which is focused on another person, feeds back to engage and readjust who we are’’ (244). ‘If found my soul in that frustrating and elevating work [of caregiving]’’ (245).

  4. 4 out of 5

    Megan

    In this book, Harvard psychiatrist and medical anthropologist Arthur Kleinman recounts his experiences in providing care. This care goes beyond his patients and students when he becomes the primary caregiver for his wife, Joan. Kleinman shares the tribulations of navigating his life as a caregiver after his wife is diagnosed with early-onset Alzheimer's. Kleinmann argues that care is central to a meaningful life, and, unfortunately, is disappearing from today's healthcare system. Although these In this book, Harvard psychiatrist and medical anthropologist Arthur Kleinman recounts his experiences in providing care. This care goes beyond his patients and students when he becomes the primary caregiver for his wife, Joan. Kleinman shares the tribulations of navigating his life as a caregiver after his wife is diagnosed with early-onset Alzheimer's. Kleinmann argues that care is central to a meaningful life, and, unfortunately, is disappearing from today's healthcare system. Although these ideas are relatively common now, the author held many of these beliefs throughout his entire career as a physician beginning in the 1960s, which I found to be quite impressive. He also explores the paradoxical nature of emphasizing caring in medical school; he argues that medical education teaches students the importance of care while knowing that the current healthcare system will not allow them to stress caring patient relationships in their future practice. A relatively interesting read, which highlights some compelling ideas and perspectives.

  5. 5 out of 5

    Eric

    I think it was a good story that the author needed to tell. I sensed it was almost a mechanical rendition of his experiences - there was some passionate language, but it lacked passion in its expression.

  6. 4 out of 5

    Karen

    Captures the gut wrenching despair, physical exhaustion and profound love that fuels caregivers. Combats the isolation that often accompanies caregiving. A physician and a caregiver.

  7. 4 out of 5

    Dana

    This a deep book that will not be a quick read. It challenges the mind, emotions, and memories. In view of other reviews here, maybe skim through the beginning about Dr. Kleinman's childhood and if you feel yourself plodding through his education and anthropology work, that too. But do read the rest! There are many books by physicians about their work. There are memoirs about caring for loved ones with dementia--Bettyville is one I thought excellent. The Soul of Care intertwines both in such a s This a deep book that will not be a quick read. It challenges the mind, emotions, and memories. In view of other reviews here, maybe skim through the beginning about Dr. Kleinman's childhood and if you feel yourself plodding through his education and anthropology work, that too. But do read the rest! There are many books by physicians about their work. There are memoirs about caring for loved ones with dementia--Bettyville is one I thought excellent. The Soul of Care intertwines both in such a satisfying way. It is a careful examination of the study of care and the real life experiences as both health care provider and patient's husband. It's a ball of yarn unraveling to an end we know but through the eyes of a psychiatrist who can help you find meaning in the distress (and mention of the tough stuff like delirium). As my sister said: no wonder we had problems when even a psychiatrist felt lost. There are exquisite examples of loving care of Joan at home and also on the job as an MD who listens deeply. I thought of Fred Rogers a few times too. As both a retired oncology nurse with burnout and then caregiver of my mother who had dementia, this book addressed both parts of my life in such a way that now I have been able to understand and accept. Then the final chapter shifts the perspective to a world view that is so inspiring. If nothing else, just read the last paragraph before the epilogue. I wanted to throw in some quotes but there are too many to pick just one or two. You read them all and you will be a better person.

  8. 4 out of 5

    Kathleen Gray

    A love story and a memoir, this is about more than Kleinman's care of his wife Joan when she is diagnosed with early onset Alzheimer's but that is, in fact, the motivating force. They met very young and while he moved forward with his career, she took a professional back seat for many years. The diagnosis changed their lives and his perspective. I'm not sure this is so much about moral education as it is about the evolution of his views. His personal experiences inform his perspective on others. A love story and a memoir, this is about more than Kleinman's care of his wife Joan when she is diagnosed with early onset Alzheimer's but that is, in fact, the motivating force. They met very young and while he moved forward with his career, she took a professional back seat for many years. The diagnosis changed their lives and his perspective. I'm not sure this is so much about moral education as it is about the evolution of his views. His personal experiences inform his perspective on others. Thanks to Edelweiss for the ARC. This isn't a light read but it's a worthy one.

  9. 5 out of 5

    Lois

    Kleinman writes with such clear grace and empathy. He's careful not to sanctify himself, acknowelding - sometimes labouring - over his faults: but the book is a testament to his dedication and compassion. He is a uniquely considerate and compassionate physician. He acts as a voice for patients whose voices and perspectives are undervalued, developing a meaningful relationship and revealing the true extent of pain for 'chronic complainers', allowing them to access better treatment and support. Hi Kleinman writes with such clear grace and empathy. He's careful not to sanctify himself, acknowelding - sometimes labouring - over his faults: but the book is a testament to his dedication and compassion. He is a uniquely considerate and compassionate physician. He acts as a voice for patients whose voices and perspectives are undervalued, developing a meaningful relationship and revealing the true extent of pain for 'chronic complainers', allowing them to access better treatment and support. His comments on the caregiver patient relationship, especially in the context of industrialised healthcare. its importance seems so hopeless when funding and other problems means there's often no consistent doctor to develop any relationship with, let alone one this empathetic, positive and respectful. His comments on the industry's corruption of the caregiving process for doctors are damning. As always, his many accurate complaints about insurance, costs and the crises many Americans find themselves in from unexpected health issues made me even more thankful for the NHS, though worried for it's future. Klienman always acknowedlges his privelleges in life and champions un and underpaid women carers, immigrants, ethnic minorities and addicts as deserving more respect and dialogue in healthcare. His observations of how the constraints of modern healthcare can corrode the caring process are similarly vivid and awful. He views the life of the patient and the quality of their caregiving bond as socially and relationally impacted on - he openly tackles and defies systemic ableism, apathy and cruelty. Klienman even lets his patients feel their anger and their hopelessness, ugly unwanted emotions the system pathologises and works to hide or ignore. By allowing these without judgement, he accepts these as a neccesary facet of dignity and self-advocacy. In the latter half of his book, his love of Joan shines through with complete clarity. He vividly paints a picture of his family life and Joan's personality and interests before her illness. Even when she loses access to her cognitive identity, Klienman always tries to evoke her autonomy, to the extent she had it each stage. This is a stunning and awful book, and should be required reading for healthcare degrees.

  10. 5 out of 5

    Joanne

    Kleinman is a Harvard psychiatrist and medical anthropologist - and someone who researched the subject of caregiving for years - who cared for his wife Joan when she was diagnosed with early-onset Alzheimers. For almost 10 years he cared for her at home, and he chronicled first-hand the limitations and the weaknesses of many caring institutions in the Boston area, as well as his own evolution as caregiver. Kleinman explores in depth how our current "every man for himself" mentality is fundamenta Kleinman is a Harvard psychiatrist and medical anthropologist - and someone who researched the subject of caregiving for years - who cared for his wife Joan when she was diagnosed with early-onset Alzheimers. For almost 10 years he cared for her at home, and he chronicled first-hand the limitations and the weaknesses of many caring institutions in the Boston area, as well as his own evolution as caregiver. Kleinman explores in depth how our current "every man for himself" mentality is fundamentally opposed to the way that society really works. He says it beautifully in the epilogue: "...the bittersweet mystery at the core of care, the soul of care..is that we are here to care. Yet care is our doubt, our anxiety. It doesn't tie up neatly, if at all, at the end. Inconvenient; often something we would rather not do, at time truly unpleasant; sometimes taking more than it gives; something that can break us. It is also among the most important things we can do. It starts out about others, but in the end it is about us. By giving care, we recognize that we, too, need to be cared for." A beautiful testament to his wife and to the centrality of caregiving in our world.

  11. 4 out of 5

    YHC

    对于照护无处不在这一事实,我们的社会仍旧选择了无视。我担 心,这种无视是出于某种无意或蓄意的自我欺骗。照护存在于我们每天 那么多的人际交往之中。在我们的学校、社区、宗教机构、青年项目、 志愿者组织以及其他无数活动中,照护都是无处不在的。更不用说,还 有那么多家人和朋友把自己贡献了出来,献给了对病残者的日常照护。 也许,无视这种照护伦理也是有点儿用处的,这样就不用放弃社会个体 的那种“精致利己”的理想化形象了。如果要认识到照护的重要性,就不 得不打破许多政治上有用的虚构形象,比如自力更生的人、自给自足的 先驱者、叛逆的创新家、超级英雄、不受政府束缚的自由行为体——实 际上,所有这些叙事都离不开人类的相互依存。对于照护行为的忽视, 只会给人们灌输盲目自信的想法,并鼓励英雄式的独立行动。 如果我们能够把“通过照护来创造美好”这句话写进我们的道德律 令,那我们的世界究竟会变得怎样呢?也许,当这句话成为我们一切行 动的起点时,整个世界都会有所改变。我们该如何把这句话写进我们的 美学教育、情感教育和道德教育之中呢?在更实际的层面,我们该如何 把它写进我们的政策和项目之中呢?我们能否想象,或许有一天,我们 的社会和国家将得到确实的 对于照护无处不在这一事实,我们的社会仍旧选择了无视。我担 心,这种无视是出于某种无意或蓄意的自我欺骗。照护存在于我们每天 那么多的人际交往之中。在我们的学校、社区、宗教机构、青年项目、 志愿者组织以及其他无数活动中,照护都是无处不在的。更不用说,还 有那么多家人和朋友把自己贡献了出来,献给了对病残者的日常照护。 也许,无视这种照护伦理也是有点儿用处的,这样就不用放弃社会个体 的那种“精致利己”的理想化形象了。如果要认识到照护的重要性,就不 得不打破许多政治上有用的虚构形象,比如自力更生的人、自给自足的 先驱者、叛逆的创新家、超级英雄、不受政府束缚的自由行为体——实 际上,所有这些叙事都离不开人类的相互依存。对于照护行为的忽视, 只会给人们灌输盲目自信的想法,并鼓励英雄式的独立行动。 如果我们能够把“通过照护来创造美好”这句话写进我们的道德律 令,那我们的世界究竟会变得怎样呢?也许,当这句话成为我们一切行 动的起点时,整个世界都会有所改变。我们该如何把这句话写进我们的 美学教育、情感教育和道德教育之中呢?在更实际的层面,我们该如何 把它写进我们的政策和项目之中呢?我们能否想象,或许有一天,我们 的社会和国家将得到确实的重组,那时,照护将得到推进,促进社区福 祉的人类活动也将得到最大限度的提升?如果对所有利益攸关者的照 护,以及对他们所处社区的照护可以达到与经济利润相当的地位,那商 业世界又将会发生怎样的变化呢?外交谈判会如何开展呢?国内正义会 有怎样的变化呢?人权、全球健康、环境保护、收入及食品安全这些问 题又会发生怎样的变化呢?我知道,在当今美国这种反照护的政治风气 中,这些夙愿很可能会被嫌弃,会被当成是天真而不切实际的想法。但 我们为什么不能畅想一下未来呢?也许到那天,我们这个世界的风气会 有所不同,会腾出一些空间让我们的道德观念发生改变,哪怕是很小很 小的改变。换句话说,如果把照护当作社会生活的根基,如果把创造美 好的照护行为看作生活的智慧,我们为什么不能行动起来,重新组织政 策和计划,重新组织态度和行动,从而让我们的世界发生改变呢?据我 所知,对于这些改变,我们在社会层面还没有任何历史学或人类学的先 例,因此这看起来或许是较为激进甚至完全不可能的。

  12. 5 out of 5

    Joanne Mcleod

    This book does define a ‘moral education’. I agree with Arthur Kleinman that this morality and art of caregiving is being depleted more and more in the education and training of physicians. I, too, believe I acquired a majority of my caregiving skills and my ‘soul of care’ outside of my training as a physician. Like the author, I regained my soul in caring for my partner and soulmate who died of terminal cancer two and a half years after diagnosis. I can very much say that she also was my caregi This book does define a ‘moral education’. I agree with Arthur Kleinman that this morality and art of caregiving is being depleted more and more in the education and training of physicians. I, too, believe I acquired a majority of my caregiving skills and my ‘soul of care’ outside of my training as a physician. Like the author, I regained my soul in caring for my partner and soulmate who died of terminal cancer two and a half years after diagnosis. I can very much say that she also was my caregiver and mentor of what it is to truly give care and love. Despite the suffering and the grief, I do believe this relationship of ‘until death do us part’ shaped and molded me into a better and more caring physician. One unfortunately has to struggle and suffer to hold onto the ‘art’ and the humanity of medicine in today’s social structure and culture.

  13. 4 out of 5

    Leslie Walker

    The first half is pretty academic and name-dropping about his Harvard and Stanford and international experience and publications. You finally get to his wife’s illness in chapter 7. The emphasis is on Dr Kleinman’s personal transformation into someone who cares instead of a workaholic who relies on his wife to do all the caring. I think he does a beautiful job of crediting her with what he learned about caring. But it’s more of a memoir about him and his academic work in medical anthropology tha The first half is pretty academic and name-dropping about his Harvard and Stanford and international experience and publications. You finally get to his wife’s illness in chapter 7. The emphasis is on Dr Kleinman’s personal transformation into someone who cares instead of a workaholic who relies on his wife to do all the caring. I think he does a beautiful job of crediting her with what he learned about caring. But it’s more of a memoir about him and his academic work in medical anthropology than about caregiving for someone with Alzheimer’s disease, although that is included in the second half. He doesn’t write about how his adult children experienced this transformation or how he found them supportive, although he says that they were. I wish he had talked more about them and whether his relationship with them evolved as his wife’s illness progressed.

  14. 5 out of 5

    Tonya Syers

    Excellent book! As a previous to caregiver to my sweetheart (glioblastoma), I began to ask the same questions as Dr. Kleinman. When your breadwinner is suddenly diagnosed with a terminal illness what are you supposed to do? What happens if he lives past his sick leave? How are we going to afford health insurance? How can a wife work outside the home (in order to provide health insurance) while providing full-time care to a brain cancer patient? Before this happened to my family, I assumed the go Excellent book! As a previous to caregiver to my sweetheart (glioblastoma), I began to ask the same questions as Dr. Kleinman. When your breadwinner is suddenly diagnosed with a terminal illness what are you supposed to do? What happens if he lives past his sick leave? How are we going to afford health insurance? How can a wife work outside the home (in order to provide health insurance) while providing full-time care to a brain cancer patient? Before this happened to my family, I assumed the government would provide some kind of (in home) help. It doesn't and this is an issue every American should care about. Every single person will become a caregiver or need a caregiver in the future.

  15. 5 out of 5

    Nancy

    This book is a lot more than the story of a doctor whose wife has early onset Alzheimers. It covers his career as a doctor and caregiver and how he transitions to both a caregiver and a caretaker of his wife of over 40 years. Joan, his wife, a brilliant intellectual, painter and writer is diagnosed before she turns 60, devastating their family. Ten years of decline follow, some of it rapid, other aspects more slowly but all of it painful. Every doctor and nurse in training should be required to This book is a lot more than the story of a doctor whose wife has early onset Alzheimers. It covers his career as a doctor and caregiver and how he transitions to both a caregiver and a caretaker of his wife of over 40 years. Joan, his wife, a brilliant intellectual, painter and writer is diagnosed before she turns 60, devastating their family. Ten years of decline follow, some of it rapid, other aspects more slowly but all of it painful. Every doctor and nurse in training should be required to read this. I only wish I could share it with my father, a wonderful doctor and caregiver who passed away two years ago. He would have loved this book.

  16. 5 out of 5

    Enstin Ye

    The first half is 3-4 ⭐️ autobiographical, still interesting as kleinman writes about his personal and professional journey to becoming a physician anthropologist. The second half is valuable and 5 ⭐️- sharing the perspective of a caregiver as his wife develops early onset dementia and they navigate a dissatisfying medical system. Really resonated while also being eye opening given his unique perspective and honest reflections of challenges of all the players involving in caregiving. Also he is The first half is 3-4 ⭐️ autobiographical, still interesting as kleinman writes about his personal and professional journey to becoming a physician anthropologist. The second half is valuable and 5 ⭐️- sharing the perspective of a caregiver as his wife develops early onset dementia and they navigate a dissatisfying medical system. Really resonated while also being eye opening given his unique perspective and honest reflections of challenges of all the players involving in caregiving. Also he is an excellent writer and I plan to read some of his other books.

  17. 5 out of 5

    Jim Woolwine

    The book comprises two narratives - the author as he grows/matures and what shapes his world view then the compelling part two of his wife's descent into Alzheimers. His experience and take on health care I found better articulated than the book by Louise Aronson which I read prior to reading this. What is the solution to current medical care which is focused on technology and pharmaceutical products to the neglect of care? The book comprises two narratives - the author as he grows/matures and what shapes his world view then the compelling part two of his wife's descent into Alzheimers. His experience and take on health care I found better articulated than the book by Louise Aronson which I read prior to reading this. What is the solution to current medical care which is focused on technology and pharmaceutical products to the neglect of care?

  18. 5 out of 5

    Bruce Campbell

    Dr. Kleinman, a pioneering medical anthropologist, psychiatrist, teacher, and scholar, turns his perceptive eye on how we view caregiving. The readable, touching, and well-researched work is informed by his own experiences caring for his beloved and brilliant wife, Joan, as she succumbed to early-onset Alzheimers. Kleinman writes, "Caregiving is an existential action confirming a moral commitment." Writing this book also confirms the author's moral commitment. Highly recommended. Dr. Kleinman, a pioneering medical anthropologist, psychiatrist, teacher, and scholar, turns his perceptive eye on how we view caregiving. The readable, touching, and well-researched work is informed by his own experiences caring for his beloved and brilliant wife, Joan, as she succumbed to early-onset Alzheimers. Kleinman writes, "Caregiving is an existential action confirming a moral commitment." Writing this book also confirms the author's moral commitment. Highly recommended.

  19. 4 out of 5

    mary evenson

    Prominent Harvard psychiatrist becomes the primary care giver for his beautiful, kind and intelligent wife who develops early onset Alzheimer’s. He critiques the medical system from the inside from the stand point of a family member and shares the struggles and joys of their life together at the end of her life.

  20. 5 out of 5

    Megan

    Read for a class but I very much enjoyed Kleinman’s story of his personal experience as a caregiver alongside his clinical interests in care and medicine. I feel like this book would be very much of interest to anyone in the medical field, as well as family caregivers who have felt left out or forgotten in the world of clinical care.

  21. 4 out of 5

    Emily

    I picked up this book not long after I learned I would be a caregiver for my parents. It helped me guide what I may feel in the months ahead and how our healthcare system cuts corners when it comes to "care." Good read on a personal and professional level. I picked up this book not long after I learned I would be a caregiver for my parents. It helped me guide what I may feel in the months ahead and how our healthcare system cuts corners when it comes to "care." Good read on a personal and professional level.

  22. 5 out of 5

    Susan

    Parts of this were so insightful, when describing how to care for others, and when describing the sad perils of dementia. But too much text was devoted to the author's own, often egotistical, journey. Parts of this were so insightful, when describing how to care for others, and when describing the sad perils of dementia. But too much text was devoted to the author's own, often egotistical, journey.

  23. 4 out of 5

    Rhea

    The most powerful parts of this book were simply related to the relationship shared between Dr. Kleinman and his beloved wife, Joan, as she slowly succumbs to early onset Alzheimer’s. The ways in which he writes about her are so fundamentally poignant. However, that can be a hard adjustment to read what seems like a love story in the context of medicine. It's a great book for those in the medical field who want to center collective care over the efficiency of industry. The most powerful parts of this book were simply related to the relationship shared between Dr. Kleinman and his beloved wife, Joan, as she slowly succumbs to early onset Alzheimer’s. The ways in which he writes about her are so fundamentally poignant. However, that can be a hard adjustment to read what seems like a love story in the context of medicine. It's a great book for those in the medical field who want to center collective care over the efficiency of industry.

  24. 5 out of 5

    Judy

    I skimmed the first half of the book (author's early life) but read with more interest the second half (on being a caregiver). Overall a good book. I skimmed the first half of the book (author's early life) but read with more interest the second half (on being a caregiver). Overall a good book.

  25. 4 out of 5

    Nicole

    Good piece on caregiving.

  26. 5 out of 5

    JKopp

    The story was about a doctor’s wife with Alzheimer’s but the focus of the book was the doctor. No new ground covered for me.

  27. 4 out of 5

    Laura zhou

    By caring others, you, in some unsought and unexpected way, end up rebuilding yourself.

  28. 5 out of 5

    Valerie

    Deeply touching: On a life in medicine, and on caring for others “Medicine, the profession I studied and practiced and loved, was treating Joan, the person I loved, as an afterthought.” Arthur Kleinman, renowned Harvard psychiatrist and medical anthropologist, becomes his wife Joan’s caregiver when she is diagnosed with a rare form of early-onset Alzheimer's disease at just 59 years old. This rare form starts in the occipital lobes, which means one of the first signs of the disease was Joan turnin Deeply touching: On a life in medicine, and on caring for others “Medicine, the profession I studied and practiced and loved, was treating Joan, the person I loved, as an afterthought.” Arthur Kleinman, renowned Harvard psychiatrist and medical anthropologist, becomes his wife Joan’s caregiver when she is diagnosed with a rare form of early-onset Alzheimer's disease at just 59 years old. This rare form starts in the occipital lobes, which means one of the first signs of the disease was Joan turning blind. Kleinman had treated patients most of his life and thought he knew what illness and care was all about. Turns out, being a caregiver and having an ill immediate family member were quite different from being a physician, and Kleinman began realizing how much there was still to learn. The book is his memoir, of sorts. He starts by talking about his upbringing, how he got into medicine (the family’s GP encouraged him), his experiences in medical school and as a resident, and later, as a renowned psychiatrist. He tells the story of how he met Joan, how they started their family, and spent time in Asia together doing research. Finally, he elicits on Joan’s disease and how being a caregiver changed him as a person. “Just so, she would encourage herself: “It’s not so bad. I can still do a lot of things, most things. Don’t worry about me – I’m OK!” Did she believe that? I doubt it, but she felt the words were important to keep us both going. They did, in fact, keep us going, but every time she uttered them, they broke my heart.” As a physician, I very much enjoyed reading Kleinman’s words. Having been on both sides of the medical system myself, I can relate to both sides of his experiences. I very much enjoyed reading about his medical education: realizing that the “higher” up you go in medical education, the less time you have to actually spend with your patients, to talk to them, to hear their stories and concerns. I did not find the book easy to read, but I found it very rewarding. I think this book will speak especially to healthcare professionals and caregivers, and I am not sure whether it would appeal to people that don’t belong to either of these groups. I very much enjoyed Kleinman’s at times poetic language and his thoughts on modern medicine. I appreciate how honest he is in the book, especially addressing his own shortcomings, making his thoughts very relatable. A remarkable, touching and very important book, which should be required reading for (future) physicians.

  29. 5 out of 5

    David Noga

    Would be 5 if I wernt moved so deeply by the author's personal loss of loved one's Would be 5 if I wernt moved so deeply by the author's personal loss of loved one's

  30. 5 out of 5

    Christine

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