The Soul of Care: The Moral Education of a Husband and a Doctor

by Arthur Kleinman Narrated by Arthur Morey

Overview

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.

Editorial Reviews

Publishers Weekly

★ 10/21/2019

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. (Oct.)

From the Publisher

"This is the story that may offer instruction and comfort to the 40 million family caregivers in the United States, and inspiration to clinicians struggling to go beyond diagnosis and treatment—to provide care." —The Washington Post

"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... Kleinman’s accessible discussion of patient care should appeal to a broad range of readers." —Publishers Weekly (starred review)

"[Kleinman] reminds us of the moral responsibility to provide care and describes care as the 'human glue' which binds together families and communities... Much more than a sad story about suffering, loss, and an inevitably downhill disease, Kleinman's graceful narrative provides the sort of tonic that society sorely needs." —Booklist (starred review)

"The Soul of Care is important. Its significance goes beyond medicine." —New York Journal of Books

“Deeply affecting... The Soul of Care is a testament to the human capacity to draw sustenance from the memories of love, even as those memories are disappearingin the person loved. It is an important book.” —Kay Redfield Jamison, author of An Unquiet Mind

“The Soul of Care will leave you shaken but instructed, with an ethical imperativeand hopeful lessons regarding howbest to cultivate one’s humanity overthe course of a lifetime.” —Paul Farmer, MD

“Heartfelt, beautifully written, incredibly moving, and so instructive . . . This story will stay with me.” —Abraham Verghese

“An astute, affecting memoir, candid and prescriptive in equal measure.” —Stacy Schiff, Pulitzer Prize-winning author

“One of the most moving books I’ve ever read. Unforgettable . . . Arthur Kleinman reminds us of what truly matters in work, life, and death.” —Howard Gardner, author of Truth, Beauty, and Goodness Reframed

“A poetic, moving, generous, and courageous account. You cannot possibly leave these pages unchanged in your understandingof what real caring means.” —Don Berwick, Institute for Healthcare Improvement

“At once a manifesto for decent health care and a brave exposing of an inner life, The Soul of Care gives language for what we all crave—effective, generous health care that nourishes those who give and those who receive until they recognize their oneness.” —Rita Charon, Columbia Narrative Medicine

“Beautiful and deeply moving. A truly extraordinary work that will change how we think about our lives and the society we live in.” —Michael Puett, author of The Path and Professor of Chinese History and Anthropology at Harvard University

“A rich account of care as presence, immediacy and attention that should matter to our medical system. But above all it is a love story—of great pain, but also of joy. It is about what really matters in our lives.” —T.M. Luhrmann, author of Of Two Minds: An Anthropologist Looks at American Psychiatry

"A personal and professional memoir like no other, how the founder of the field of medical anthropology learned that caring meant listening, and how at the peak of his career, when personal tragedy struck, Kleinman learned the deepest meanings of care." —Ellen Winner, Professor of Psychology, Boston College, author of How Art Works

“Arthur Kleinman’s very human story is an inspiration for all of us.” —Lee Goldman, Dean of Columbia University School of Medicine

“What was at stake for Arthur in his caring for Joan was nothing short of his humanity. Read this book and prepare to be both humbled and inspired.” —Jim Yong Kim, Former President of the World Bank

“One of our nation’s most humane doctors and profound thinkers has insightful, moving, and novel things to say about our capacity to give and get care. Powerful, intimate, poignant, and helpful.” —Nicholas A. Christakis, MD, PhD, and author of Blueprint: The Evolutionary Origins of a Good Society

“A love story for the ages, a moral treatise, and a devastating critique of the absence of care in modern institutions and relationships.” —Tahmima Anam, author of The Bones of Grace

Kirkus Reviews

2019-07-01
A renowned psychiatrist and anthropologist mixes a memoir of his adolescence and professional training with a detailed account of his decade as a caregiver for his wife, who was diagnosed with early-onset Alzheimer's disease.

Born in 1941, Kleinman (Anthropology/Harvard Univ.; What Really Matters: Living a Moral Life Amidst Uncertainty and Danger, 2006, etc.) gravitated toward medical studies after a difficult family life and a streak of "waywardness." He relates his love-at-first-sight relationship with Joan. They met in college; she was two years his elder, from a more stable family and a worldlier background. For many years, she placed her professional desires in the background to care for the home, rear their children, take the lead in developing their friendships, and make day-to-day living as easy as possible for her workaholic husband. His dual interest in both medical care and anthropology led them around the globe, with emphases on China and Taiwan. Eventually, Joan also developed expertise in Chinese language and culture. Given her sterling example of winning trust from almost every person who entered her life, Kleinman developed deep empathy and excellent listening skills, making him a holistic practitioner who understood the intricate connections among mind, body, and the stresses of the larger culture. When Joan started failing physically before age 60 due to what finally got diagnosed as early-onset Alzheimer's, Kleinman felt compelled to learn how to serve as a caregiver within what he came to understand as a dysfunctional American health care bureaucracy. In addition to providing a detailed account of Joan's decline and death during 2011, he also offers case studies of his nonfamily patients. As he clearly shows, his patients informed his care of Joan, and his arduous caregiving for Joan informed his medical practice. The second half of the book, focused on the author's dedication to his wife's care, is more compelling than the scattered, often repetitious first half.

An uneven but poignant memoir that will be useful to caregivers of all ages and occupations.

Product Details

BN ID:	2940172133688
Publisher:	Penguin Random House
Publication date:	09/17/2019
Edition description:	Unabridged

Read an Excerpt

One

Not much in my youth signaled a future of caregiving.

I never knew my biological father, Nathan Spier. Even as I write his name, I am unable to conjure a face or even a shadow. My mother, Marcia, ran away from him and from a marriage she couldn't tolerate, taking me with her, when I was one. I didn't know his full name or anything else about him until I was in my twenties, and even then, the subject remained radioactive enough in my family that I made no serious effort to find him. The mystery of my origins would haunt much of my young life. My own mother was unable to talk to me about my biological father and his family until she was in her sixties, and even then, she insisted that I should never meet him. A real estate developer, called the King of Bensonhurst as I later learned, he and his family had been involved in a scandal concerning illegal influence on the courts that resulted in the suicide of a judge. And to this day, that is all I permitted myself to know.

I grew up in a well-to-do Jewish family, in an economically and culturally mixed Brooklyn neighborhood. Our household, at least initially, consisted of my mother, my maternal grandparents, and me. My mother was a vivacious redhead (dyed) who loved the high life filled with nights out on the town, which she balanced with volunteer work in hospitals and for Jewish advocacy groups. She had the means to hire nurses and maids to look after me and, later, my brother. When she realized that I had played hooky from Hebrew school for several weeks, she assured me that I would indeed learn enough Hebrew to achieve my bar mitzvah, because she would not be denied the privilege of throwing a big party, as was expected in her circle. She made it clear throughout my childhood that I was to become a physician or a professor, or some other high-status professional whose intellectual achievements would add a patina of class and respectability to the family's financial success.

My mother was also high-strung and volatile. I never doubted her love, but at the same time, I found her emotionally untrustworthy. When my half brother came along, I never felt sure if her concern for me was as great as her worry about him. I sensed that she and the rest of the family saw me as more self-sufficient and able to look after myself. My stepfather would prove to be almost as much of a party animal as my mother, and their friendship networks included all kinds of colorful and sometimes slightly shady characters.

My mother was one of four daughters, but her father's clear favorite. It was for this reason that we lived with my grandparents. My grandfather, a proudly secular Jew of Russian background, had built a prosperous soap company and amassed real estate holdings. His business prospered in the 1930s and early '40s but went into precipitous decline in the postwar years.

My grandfather was, I imagine, typical for his times, but would seem totally out of place in the second decade of the twenty-first century. He was formal, distant, and authoritarian. He didn't express his love in words but in deeds, protecting and often defending me when neighbors and shopkeepers objected to my delinquent behavior. I remember one Saturday morning, when the Lubavitcher Rebbe, Menachem Mendel Schneerson, a monumental figure in the Hasidic Jewish community who had recently moved next door, took away the basketball I was dribbling and told me not to play on the Sabbath. It was my grandfather who retrieved my basketball from the Rebbe and admonished me to play with it outside every Saturday from then on. He was at the very center of the family-a loving paterfamilias-and he carried as an almost sacred duty the responsibility for our financial and social security. I admired my grandfather, and always felt secure under his protective wing but never felt emotionally close to him.

In contrast to my high-living mother, my grandmother was old-world, a poorly educated, superstitious, and increasingly paranoid matriarch who never left the house and who occasionally whispered to me that I came from an even richer family. Her mysterious mutterings only further confused and disturbed me, since she would stubbornly refuse to elaborate, no matter how hard I questioned her.

These older generations saw me as a willful, headstrong little boy, naturally resistant to authority. In the family's folklore, these traits were forged at birth, when I emerged from the birth canal with the umbilical cord wrapped tightly around my neck, blue and struggling to breathe. In their eyes, I was born a fighter, and it's fair to say that I did little to dissuade them from that notion as I grew up.

In 1943, when I was two years old, my mother absconded with me to Miami, so as to thwart my biological father, who was trying to use legal means to compel our return. (Apparently, Florida did not recognize New York State's marriage laws then.) For a while we lived across from a hostel for army and navy officers, several of whom took an interest in my mother. I remember asking each one plaintively but with hope, "Are you my father?" Perhaps this sense of loss and longing contributed more to my aggressive willfulness than any birth trauma I might have experienced. At any rate, my behavior got bad enough that my frustrated kindergarten teacher insisted my mother remove me from the classroom. "He only does things his own way," she complained.

My mother met the man who would become my stepfather during that brief sojourn in Florida. Peter Kleinman had played professional basketball and was a minor celebrity in his day. He was good-looking, friendly and charming, and admired by many. I admired him, too, when I was young. As I grew older, though, I could see that my grandfather regarded him as a failure in business and in his law practice, and with good reason. I think even my mother, who loved her new husband, came to share this view. I could feel my stepfather's love and concern for me-he was the man I saw as my dad-but I understood and accepted that he loved my brother, his natural son, more. Peter Kleinman would adopt me when I was twelve, changing my name from Arthur Spier (pronounced "Spear") to Arthur Kleinman, so that it felt as if I was starting out anew.

In the decade after my grandfather's death in 1958, during which time my stepfather stopped working, he and my mother together spent her entire inheritance. I didn't feel the loss of the family's financial security as deeply as the resentment, embarrassment, and maybe even shame over the irresponsibility of my parents, who had put the family-meaning my brother and me-second. This was quite the opposite of the example set by my grandfather.

My kindergarten teacher wasn't completely wrong about me. I remember an episode from around that same time, when I angrily informed my mother I was running away from home. When my mother opened the door I had so dramatically slammed on the way out, she found me sitting on the steps. I couldn't go any further, I explained, because I was not allowed to cross the street on my own! Clearly, there was something in my nature, even at this early time, which acted as a natural brake on my impulsiveness. I could be difficult, but I knew there were rules and directives that needed to be followed. And I was not so foolhardy as to do something that would cause me to injure myself. This fundamental awareness would keep me out of trouble time and again during my childhood, or at least it helped keep that trouble to a mostly manageable level.

Back in Brooklyn, I attended a public school four blocks from our house. Our Crown Heights neighborhood was a mainly Jewish enclave surrounded by Irish and Italian communities, where apartment blocks thrust their dark brick facades from between brighter rows of sturdy single-family houses. In the street, we boys played stickball or punchball, bought vanilla or chocolate cones from the ice cream truck, shot marbles, flipped coins, watched the girls play hopscotch, experimented with cigarettes, and fought with one another to see who was the toughest. Nobody bothered to hide their racism or anti-Semitism in the 1940s and early '50s, and I got into many fights on the streets outside our little enclave on account of being Jewish and unwilling, to a point anyway, to back down. But there must have been more than this at stake for me because I fought with Jewish boys too.

My life on the street from 1944 to 1953 contrasted sharply with the cushy existence at home, where we had a cook and a housekeeper and I never had so much as a chore to do. I was given to understand that I would always be financially secure and that the family would always take care of me-not exactly the best message to encourage my sense of responsibility and stewardship. I treated myself from childhood on with a carelessness that was surely compounded by my mother's distraction with a new marriage that had produced a new child. I neglected my health, as did most kids then, I suppose, and have suffered the consequences ever since, with dental problems, asthma, melanoma, and other ailments.

My neighborhood friends came from hardworking ethnic families, and most were not well off like mine. I spent my childhood with these tough working-class kids, instinctively understanding that the best way to survive the bullies and the street fighters was to become one of them. I learned to take care of myself, teasing, hassling, and abusing other kids just for the sport of it. I was becoming not just tough, but hard.

And yet that same instinct that kept me from crossing the street when I wanted to run away from home must have also tempered the worst of my behavior toward others. It was partly a nascent awareness of the need for self-protective boundaries, but also an awakening sense of the emotional and moral responsibilities of relationships. Around age ten or eleven, when girls started to come into focus, I developed a childhood crush on one in particular. But the conventions of courtship entirely escaped me. I think I must have believed that I had the right to help myself to whatever captured my fancy. At the end of the school day as we all left to walk home, I asked her if I could carry her books. It never occurred to me that I might be rebuffed, and when she said "No!" I impulsively grabbed the books and ran away. It took only a few moments to recognize I had done something shameful and for a hopeful suitor terminally unhelpful, so I returned her books with a burning feeling in my face and chest.

At the same age, an older boy in the playground tried to wrench my brand-new basketball from my hands. When I refused to let go, he banged my head repeatedly against the steel pole that supported the hoop. My head was bleeding, but I refused to cry in front of him or the other kids who had gathered around, or beg for the ball back. I ran home believing my dignity was still intact but bearing the wounds of battle. I wasn't angry about the injustice done to me; I was just burning for revenge. I would show I would not be trifled with or cowed. I would strike back. I had watched and learned. But all I had really learned is what every bully knows: you pick fights with those you can defeat and humiliate.

I came to the cynical understanding that beneath its orderly and proper exterior, it is a violent world without justice or goodness. I learned another brutal lesson, also not compatible with caregiving, in a fight with another aggressive boy who lived on the block. Following a minute of grappling and hitting, I locked my arms around his head and squeezed as hard as I could. He started to cry and begged me to stop. So I released my hold, only to have him crush my neck with a hammerlock that was so tight I couldn't breathe. I gave up, and he celebrated his victory by laughing at me. It would take me a long time to unlearn the lesson this particular beating taught me: to resist empathizing with my enemies, to take no pity, no mercy.

Every now and then, though, the light found its way through a crack in my armor. One summer when I was eleven or twelve, I had gone to a summer camp in upstate New York, where I joined with the other more rugged campers in making fun of a small, bespectacled boy who avoided sports and always carried a book around. But his surprising response to our teasing-arguing that he was becoming serious about intellectual matters-was so passionate, so mature, and yet carried lightly with a self-deprecating humor that I felt a respect and even admiration for him. This boy was also caring. When I got hit in the head with a softball pitch, he ran over to see if I was all right. I knew I liked him and what he stood for, which was so very different from the rest of my experience. I couldn't recall having felt that way before, except for the tough kids whose coarse behavior I emulated. I remember wondering if there might be a way to be like him and also still be myself. This was one of the first times in my life that I actually began to see that there was a part of me that wasn't being cultivated at all, and perhaps was even being stifled by my hard shell.

Yet even on those tough streets occasionally there was evidence that friends had your back, at least when you were threatened by "outsiders," such as kids from other neighborhoods, older kids who belonged to rival gangs, or the police. I remember a time when everybody knew about a big gang fight among high schoolers that was to take place in a park near my school. I was very excited and planned to go. Two of my friends prevented me from going, insisting that if I got involved, even as an observer, I was likely to get into more serious trouble. At a nearby movie theater for a Saturday matinee, a fight started several rows behind where I was sitting with friends. I started out of my seat to take a closer look at the action, but one of my classmates abruptly pulled me back by the collar of my jacket, saying, "Come on, they have knives. We are getting out of here!" Could we call these school chums and street friends a social network that functioned as a caring circle? If I had used words like these with them I doubtless would have been laughed at and ridiculed. 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.

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