The Burden of Sympathy: How Families Cope With Mental Illness

THE B U R D E N OF SYMPATHY

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THE BURDEN OF SYMPATHY How Families Cope with Mental Illness

DAVID A. KARP

OXJORD UNIVERSITY PRESS

2001

OXFORD UNIVERSITY PRESS

Oxford New York Athens Auckland Bangkok Bogota Buenos Aires Calcutta Cape Town Dar es Salaam Delhi Florence Hong Kong Istanbul Karachi Kuala Lumpur Madrid Melbourne Mexico City Mumbai Nairobi Paris Sao Paulo Singapore Taipei Tokyo Toronto Warsaw and associated companies in Berlin Ibadan Copyright © 2001 Oxford University Press, Inc. Published by Oxford University Press, Inc. 198 Madison Avenue, New York, New York 10016 Oxford is a registered trademark of Oxford University Press All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior permission of Oxford University Press. LIBRARY OF CONGRESS CATALOGING-IN-PUBLICATION DATA Karp, David Allen, 1944The Burden of sympathy: how families cope with mental illness / by David A. Karp. p. cm. Includes bibliographical references and index. ISBN 0-19-512315-8 1. Mentally ill—Home care. 2. Mentally ill—Family relationships. 3. Caregivers. I. Title RC439.5.K37 2001 362.2'0422—dc21 99-058513

135798642 Printed in the United States of America on acid-free paper

For all the Family and Friends at MDDA and especially for Tom Schaeffer, who believed that "out of all the apparently evil, dark, and painful stuff, our job is to make flowers grow"

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CONTENTS

ACKNOWLEDGMENTS

ONE

Illness and Obligation 3 TWO

Bearing Responsibility 35 THREE

Managing Emotions 71 FOUR

Family Ties 109 vii

viii

Contents FIVE

The Four Cs

151 SIX

Surviving the System

193 SEVEN

Caring in Postmodern America 232

NOTES

265 REFERENCES 291

INDEX

303

ACKNOWLEDGMENTS

The Burden of Sympathy tells the second half of a story I began in a previous book, Speaking of Sadness. Because Speaking of Sadness emerged so significantly from my own difficulties with depression, I had a visceral sense for the validity of my arguments as I did the writing. This book depended more on "distance learning" since I have not had firsthand experience caring for a mentally ill family member. That being so, the completion of this enterprise required substantial reliance on colleagues, friends, and family caregivers who helped to shape my ideas or to provide an insider's perspective on the adequacy of my analyses. I consider myself unusually fortunate that among my closest friends are two colleagues at Boston College. My ongoing conversations with Charlie Derber and John Williamson are always enormously engaging. Their wisdom and compassion help me to live life more gracefully. They are also extraordinarily gifted social scientists whose advice invariably makes my work better. I am deeply appreciative that Charlie and John are always willing to let me share the moments of doubt, confusion, and pleasure that all writers experience. Another longtime friend, Bill Yoels, has been my collaborator on ix

Acknowledgments

several books and articles since we first met in 1971. He has read every word I have written for nearly three decades. Nothing I write goes off to a professional journal or book publisher until it gets Bill's approval. I admire his sociological imagination, his playfulness with ideas, his ironic wit, his intellectual integrity, and his honesty about the things I write. Bill has also been a great friend when my needs went far beyond sociological counsel. The relationships that can come of it are among the most gratifying payoffs of doing ethnographic research. When I began this project I asked the members of a "Family and Friends" support group at McLean's hospital in Belmont, Massachusetts, whether I might join them, strictly as an observer. They have been exceedingly gracious in supporting this work from the outset. I continue to sit in on the group nearly every Wednesday night because I continue to learn new things. I also go because I now count several group members among my friends. Finally, I go because, in simple human terms, I want to hear how their always difficult, poignant, and courageous stories continue to unfold. You will see just how significantly my thinking about caregiving has been influenced by what I see, hear, and feel in that group. About a year ago, the MDDA (The Manic Depressive and Depressive Association) Chapter at McLean's changed its rules. I never learned what precipitated the change, but the guidelines read in each of the "sharing and caring" groups at the start of meetings now explicitly deny access to "observers." When I first heard the new rule and volunteered to leave, Jim, one of the group's mainstays told me, "Oh no, we've discussed it and that rule doesn't apply to you. We want you to stay. You've been here for a long time and, besides, you're going to tell our side of the story." The communication both pleased and concerned me. The vote of confidence was terrific. However, being seen as a spokesperson of sorts made my task feel far more weighty. I hope that Jim and every other person I've met in the support group would approve of what I have written. Several students, colleagues, and caregivers read drafts of this book as I went along. Sometimes they advised me about theoretical

Acknowledgments

directions. Sometimes they sensitized me to errors, misplaced emphases, or important omissions. Let me thank Michele Carpentieri, Marjorie DeVault, Elizabeth Doherty, Barry Feldman, Arthur Frank, Sigrid Johnson, Christina Johnson-Levetin, Aimee Marlow, Nancy Redding, Alice Schaeffer, Tom Schaeffer, Nancy Sharby, Valaya Tanarugsachock, and Diane Watts-Roy. I hope I have done justice to your insights. There are others whom I cannot acknowledge by name. Their wish for confidentiality is understandable. Unfortunately, it reflects America's continuing and disheartening ignorance about mental illness. Thank you all. As I approach my thirtieth year teaching at Boston College I once again feel lucky to have spent my working life at such a humane and supportive institution. A Boston College Research Incentive Grant helped to get this work off the ground. Later, a Research Expense Grant from the university kept the momentum going. I am also grateful to the American Sociological Association for awarding me a grant as part of a "Fund for the Advancement of the Discipline." These sources of financial aid freed me from some of the more onerous tasks associated with in-depth interview research and maximized the time I could spend reading, thinking about the data, and writing. Of course, my work depends completely on the real "experts." I feel tremendously privileged to have heard the accounts of the sixty people whose words constitute the core of this effort. They were remarkably candid with me about a very painful aspect of their lives. Each person is a reminder that maintaining commitments when they are most sorely tested is an act of great courage and heroism. If it is ever demanded of me, I hope I can honor my obligations as well as the people who speak throughout this book. I have tried to illuminate the commonalties they faced in caring for someone they love with a mental illness. Although it does not diminish the tragedy of catastrophic illness, my most profound hope is that by recognizing themselves in the accounts of others, caregivers who read this book will feel less alone in their struggle. Shortly after she completed two years of Peace Corps service in Western Africa, I took advantage of my daughter Alyssa's temporary

xii

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unemployment by having her proofread the manuscript. It was also fun to have her as a travel companion when I gave occasional talks on my research. While my son, Peter, kids me about all the time I spend at home, I think he understands that what I do actually qualifies as "work." Finally, as always, I am deeply indebted to my wife, Darken. I simply could not do my writing without her support, encouragement, love, and care. D.A.K Chestnut Hill January 2001

THE BURDEN OF SYMPATHY

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ONE

Illness and Obligation As little as we know of illness, we know even less of care. As much as the ill person's experience is denied, the caregiver's experience is denied more completely. ARTHUR FRANK, At the Will of the Body

The sequence of events beginning nearly four years ago in Leslie's life was not unlike the plot in a Steven King novel. At first, the incidences seemed pretty insignificant, although each did cause momentary wonder and worry. After a slightly unsettling event, life returns to its normal, relatively uncomplicated rhythm. At a point, though, the disturbing events become more frequent and seem to constitute a pattern. Characters may now begin to confide uneasy feelings to each other about what has been happening, while finding ways to deny that anything is badly amiss. At a point, the scary problems become so intrusive that the now badly frightened characters know something must be terribly wrong, although they still can't comprehend what is going on. They begin an earnest search for answers, but the underlying cause of the expanding strangeness eludes them. Finally, such awful events occur that life becomes a frantic effort to solve, escape, or somehow eradicate the clear horror that now dominates every waking moment, even haunting their dreams. Because of the sheer complexity of her son's illness and her need to talk about it, Leslie and I spoke on three separate occasions. Near the beginning of our first conversation she said that "so much 3

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has happened in three years that I don't even know where to begin. ... It's overwhelming." There was, though, one thing that she absolutely wanted to bring up right away and have me understand. Through a phone conversation prior to our meeting, Leslie knew that I was interested in the "boundaries of obligation." Before I could ask my first question she told me that "my boundaries are very different from other people's." She went on to explain that "Mike has the potential for violence. And ... because I know this is being recorded, it's really important to me for you to know that he is innately a very, very sweet and kind person. But [because of] his disease he gets very paranoid. His disease has made him a danger to others.... I mean, he wouldn't even step on a bug, you know? But this illness is so [awful] and he has attacked his brother, attacked his sister." Throughout our nearly ten hours of talk, Leslie repeatedly sought assurance that I would not confuse Mike with his disease. The first hints of a problem began when Mike was in the sixth grade. Unlike most ten-year-old boys, "he hated sports. He just loved to read and so I just figured, 'Well, most boys are out there playing ball or whatever, and Mike doesn't want to do that. He reads. His life is books. So he was different in that way.' " Because Mike also wore glasses and was skinny "he didn't really fit in.... He used to be teased a lot." Later in high school, "kids used to put tacks on his chair ... [and] one kid on the school bus held a bottle of shampoo over his head and... it came down all over him and ... the bus driver never did anything." Such mistreatment would be unsettling for any parent, but more ominous was a call from Mike's sixth grade teacher who felt obliged to tell Leslie that "Mike looks at me like he wants to kill me." Since Mike was "a very kind child and.... an excellent student [and] was a good kid at home, I thought the teacher was crazy." Three years later the family had moved to the Midwest, Mike's grades began a dramatic plunge, and his new ninth grade teacher reported in a conference, "Gee, he looks at me like he wants to kill me." This was the beginning of "a crescendoing... an escalation of signs of trouble."

Illness and Obligation

By the ninth grade it was plain that Mike was significantly distressed. "He started to get very poor grades.... He would sit in the back of the class and read his own books... books like history [and] philosophy." By the time he was a senior Mike had "become very difficult" and, Leslie recalled, "I would call his guidance counselor in high school—the poor man—[and] I would start crying on the phone.... But everyone would say, 'Oh, Mike's okay. He'll be all right.' " As much as they wanted to believe that Mike was all right, Leslie and her husband Bob now openly spoke about getting him counseling and even contemplated finding a private high school where he might fit in more easily. The belief that Mike's behavior reflected normal adolescent confusion became somewhat more untenable after a particular incident. Along with some friends, Mike pulled a prank that was very unsettling to a neighbor. Because Mike had been driving the family car and someone noted the license number, the police arrived at their home. Leslie promised to call the other boys' parents, and with that the police left. She then described to me the scene as she later tried to talk with her son: I said, "Mike, don't you understand that... it was funny to you kids, but to this man [it's not funny]." And Mike, well, he couldn't see it. And so, I just put my hands on his shoulders, and I put them gently, and I said, "I just want you to understand what it meant to this man." And all of a sudden, he like pushed me away. We were in the kitchen, and there was a basket of fruit—grapefruit, oranges. And he picked them up, one by one, and hurled them against the wall. I mean, so that there was, you know, pulp and juice. I mean the kitchen, the family room, there was this splattered fruit everywhere. And I was, like, numb. I just said, "What are you doing?" But I was just like, frozen. And then he said, "I have to take a walk." Well, by now it was like midnight; it was pitch black. He walked out of the house. I didn't know what to do. I didn't know whether to call the police. You know, I thought, "Well, I'll wait. He'll come back." Well, I found my daughter, she's two and a half years younger

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than he is. This had woken her up. She was sitting on the stairs, crying, saying, you know, "Why does he do things like this?" So, I talked to her and hugged her. She went back for a while to bed. And I started scrubbing this pulp and this juice and this mess that was all over. And I'm ... meticulous at housekeeping.... So I spent the entire night, from like 1:00 A.M. to 6:00 A.M. scrubbing this mess, and he never came home.

Just as they would respond so many times before eventually accepting Mike's diagnosis of "schizo-affective disorder," Leslie and Bob hoped that one change or another would solve the problem. Despite his low grades in high school, Mike achieved an exceedingly high score on the SAT tests and was admitted to a local college with a scholarship. She told me that "we both just really hoped that he would go to college and would find his niche there, and that would solve everything." They were, therefore, chagrined when Mike's first semester grades were so poor that he lost his scholarship. Nevertheless, despite heavy drinking and probable drug use, Mike continued to get by. Things seemed to change for the better when he took a course in Russian language and excelled. He changed his major to Russian Language and Literature, was admitted into a junior year abroad program, and, most important, told his parents, "I finally found somewhere where I fit in." Leslie remembered, "I [was] feeling euphoric. Oh, he's happy and everything's going to be fine." Aside from hoping that a newfound love for language and foreign culture would turn things around, Leslie admitted with some embarrassment that she was happy to have her son leave for a year. She said, "Well, I'm really ashamed of this. The thought of him being inaccessible for twelve months was a wonderful thought to me. I was actually delighted that he was accepted because, God forgive me, I knew that I wouldn't set eyes on him again for twelve months, that he'd be too far away." She went on to explain, "See, he [still] didn't have any kind of diagnosis. I just thought I loved him but I couldn't stand him." Not only did they get a respite from

Illness and Obligation

their son's difficult behaviors, they also began to feel more hopeful that Mike's "adolescent rebellion" was over. "He got A's in his classes and 'he sounded good,' so we did think, 'Eureka!' you know?" Such optimism was, however, short-lived. Things began to unravel completely after an "accident." As they later pieced it together, Mike had, in fact, purposely set his dorm room desk on fire. Although school officials accepted his account, Mike began to lose interest in his classes, "traveled around Russia for the next half a year, got no credit... and [finally] came home. . . . He looked terrible. He's very tall and must have weighed 120 pounds. I mean he was a walking skeleton.... God forgive us, we couldn't stand him. He was slovenly.... He wasn't shaving. He wasn't bathing." Leslie now understands all of these as "signs of mental illness," but at that moment could not recognize his behavior for what it was. She was, though, "thinking something is seriously wrong here." Despite their grave misgivings, Mike insisted that it would be best for him to spend time with friends on the West Coast, and Leslie reluctantly paid for the plane ticket. A short time later, he was home again, having alienated friends, lost multiple jobs, and squandered the money urgently and repeatedly wired to him via Western Union. By now, Leslie could not dismiss mental illness as an explanation for the years of turmoil, which began so subtly in the sixth grade. Our conversation proceeded this way: This is absorbing your life at this point? Oh, my God. Oh, yes. I knew he was ill. And there was something on the news about one of these incidents where a postal clerk... a disgruntled person, had gone in and shot other people. And in my heart, I felt that my son could do, and might do, something like this. I just had the feeling in my heart that my son was capable of killing, because I was sure at this point... that he was crazy, and that he was capable of killing. And I said to my husband, we were watching the news, and this thing was on the news, and I said, "You know, I think Mike is capable of that." And he said, "What??!!" He

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said, "You're crazy." I said, "Don't you feel that he is capable of hurting someone?" He said, "No!" So did that make you feel that you were off the beam? I felt in my heart that I wasn't off the beam.... So, finally, once again he called and needed money, and we just said, "Forget it," you know? "The only money you'll get from us is a plane ticket back here. You have to come home." And we weren't going to give him money to buy it. We said, "We'll get the plane ticket. You go to the airport, and the ticket will be there." So by this time you really had to start taking precautions about how you sent money. Oh, yes, yeah.... So he came back, and I picked him up at the airport that day.... Anyway, so he came home, and we have a finished basem*nt, and I had turned his room upstairs into a guest room, with his knowledge.... So, for the first couple of weeks, we just never saw him. He just slept, slept, slept. At first I thought, "Well, sure, he's tired." Then I began to think, "He's depressed. He's always in bed." And I tried to talk to him about it. The other thing . . . well, we kept finding, like broken glass and stuff. And I thought, "Well, he's clumsy. He's breaking stuff. He's dropping things." And I was finding, like, marks on the walls and on the floors. It turns out, he was spitting. He was spitting all over the walls and the floor, but I didn't realize that. I mean, you don't expect that your kid is spitting everywhere. So, we would find broken glass, and all I said was, "Mike, if you break a glass by accident, make sure you clean it up, so no one gets cut." So, one day I went down to his room—he did his own laundry, but he had left it upstairs, and I wanted to stick it in his room, and get it out of the way. And I walked into his room, and his dresser is carved up. Huge letters. There were three drawers. On each drawer was a huge word—f*ck ... THIS ... sh*t. He had to have spent the whole night [doing it]. Plus, there

Illness and Obligation

were holes bored into it. There was no more denying it.... This kid was really sick. As she continued to detail her son's increasingly strange, destructive, and threatening behaviors, Leslie tried to convey just how incredibly awful she found the unfolding of her son's illness. At various points she said: "Sometimes I think it would be easier if he had cancer. His disease is so dreadful." "When all this hell, this sheer hell broke loose... we were in such agony." "Not to sound melodramatic, but it's worse than a movie. I mean, I can't believe it's my life, my son's life." "We don't have a life. We don't have a life." "I just look at him and my heart breaks all the time." "It's always on my mind. It's my existence. I am obsessed with my son's illness. His illness is my life." As her account moved from one horrible scene to another, several involving physical violence, the profundity of Leslie's pain became more palpable. By now, also, her two younger children (a seventeen-year-old daughter and fourteenyear-old son) had become thoroughly traumatized. Her daughter, for example, "was barricading her door at night, piling stuff up against it, and hung bells on her door so that if the door moved the bells would jingle." Their son was "using one of those bars advertised on T V . . . . He was locking himself in with that at night." By the time of our interview, Mike had already been hospitalized five times. Each hospitalization was preceded by extreme psychosis and overtly threatening behavior. Perhaps, though, it was the first hospitalization that was the most agonizing for Leslie and her family. The episode leading up to the hospitalization began on a Thursday evening. Mike was breaking things and throwing them in a dumpster. By the time he was done, "he had broken over $2000 worth of stuff.... He would take the pool cue—there were recessed lights in the ceiling—and he was breaking all of those. He started breaking things and he didn't care if we knew." After an emergency consultation with a psychologist, Leslie and Bob were told that Mike should be hospitalized immediately. At first, they said, "No." "Even though we knew it was serious, we thought she [the psychologist]

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just went off the deep end. [We thought], 'All he needs is some counseling.' " They returned home, hoping to handle things themselves, but the next day brought an even more frightening event. After failing to register, as planned, at a local college, "Mike walked into the house, picked up a kitchen chair and slammed it on the floor, breaking the chair and putting a hole in the floor." His younger brother, unable to contain himself, screamed, "I am sick of this." Mike then "grabbed Josh and brought his knee into Josh's stomach, and he was holding him there, and he said, 'Which way do you want to bleed to death?' " Following an hysterical call from Josh, Leslie rushed home and, after being threatened herself, fled to a neighbor's home to call a crisis team. On her way she spotted a police car and flagged it down. The police escorted her home and although Mike was still talking strangely, "He didn't look crazy. He looks like he's fine, you know? And I had cleaned up everything he had broken. There was no evidence of the stuff he had been smashing." After a brief talk, the police left. Later, Leslie would say, "I just couldn't believe the police were there and I sent them away." By the time her husband returned home, it was plain that Mike had to be removed from the house. The whole family spent a harrowing weekend until Bob could get to a local district court on Monday. Here is how their son was removed from his own home: So, the courthouse opened at 9:00, and my husband was down there at 9:00. And I'm thinking to myself, "Oh, this will have to take a few hours, at least." I just didn't want it to happen. So, I'm thinking, "He'll be there for hours. We've got at least a few hours." He was back within half an hour, and he said, "They'll be here in a few minutes." And sure enough, within ten minutes [they arrived].... Now, no one prepared us, no one prepared us for the horror that this would be. They sent two police cars. Josh was in school. Andrea was home, because it was semester break. Two police cars. Mike was asleep. They sent in four officers. They went downstairs to his room, burst in on him, grabbed him and put handcuffs on him, while he's

Illness and Obligation

barely awake, and like, even if you're in your right frame of mind you'd be confused. And so, here is this very sick person. And he is going, "This is a mistake. This is a mistake." He said, "Just ask my dad." My husband was so distraught. This was probably the worst day of our lives. My husband was so distraught. He was trying not to sob. Andrea was hysterical. She was hysterical. So, I'm holding Andrea. And the cops are taking Mike. I don't think he even had shoes on. It was January. He couldn't get a coat on, because he was handcuffed, you know, behind his back. I forget.... I think Mike's saying something like, "Could I please put my shoes on?" I . . . threw a jacket over his shoulders, maybe. And they took him away. And my husband is sobbing, Andrea's sobbing, I'm sobbing, we are just all sobbing. And so, they took him to the [names town] District Court, and they put him in a jail cell. And, after a while we composed ourselves, and we went down to the courthouse. And he had to go before the judge. And they asked us if we wanted to go into the courtroom. And I couldn't. I mean, he was given a public defender.... This was taking hours now. And they interviewed us, and then had to go talk to Mike. And all of this was taking forever, taking forever. And then, finally, after all of that, he told us that he would recommend that Mike be hospitalized.... So, he had to go to [names a health center], which is a state hospital, an acute care facility. But they put him back in the jail cell. He sat in a jail cell from 9:30 in the morning until 6:00 at night, just sitting in a jail cell. And he was mentally ill. It doesn't seem right, the whole thing. We were never prepared for four police officers putting him in handcuffs. I mean, this person, he's sick. It was a nightmare. It was just a nightmare. The circ*mstances I have described certainly suggest the degree to which Mike's illness has become a nightmare for a whole family. Since I have not spoken with Leslie's husband or children I cannot know just how completely mental illness has enveloped each of them. From her account, though, I believe that Leslie, like all the mothers with whom I have spoken, has found it more difficult than

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other family members to distance herself from a child's catastrophic illness. She told me, "I honestly don't think there is a minute of the day that I am not thinking about... my son. I wake up thinking about him. I go to bed thinking about him. If I wake up in the middle of the night... I think of him.... It's my existence. He's my child." Leslie repeatedly worried aloud about the ways her "obsession" with Mike's illness might be injuring her husband and children. Several times, she expressed concern that "I am failing my other children and failing my husband" because "I am stuck in this little world of my son and me." The parts of our conversation about the division of the caregiving labor in Leslie's family were instructive. During his lengthy hospitalizations, Leslie visited her son nearly every day, but did not expect anything approaching such an involvement from her children. Josh is "away at school and he really can't get back here." "Andrea," she explained, "is very sympathetic. I mean, she loves him, but she finds it very difficult to go there [the hospital] and visit him. So, she's gone a few times, but she doesn't go and I understand. She just finds it too hard. She needs that space." When our conversation turned to her relationship with Bob, she was willing to say, "If I were my husband, I'd want to leave me at this point." At the same time, she also expressed frustration that Bob did not understand her feelings as a mother. Leslie spoke for most of the mothers in this study when she lamented that her husband "puts things in compartments. He can go to work and he puts it out of his mind. But with m e . . . it colors everything I do and he doesn't understand this." She went on to say: He's my child. I gave birth to him. I had this intense bonding with him when he was born, and he was j u s t . . . you know, so perfect and beautiful.... And I mean, I still love him. You know, he's my child. He's part of my body. And my husband, I try to explain that to him, and he doesn't quite get i t . . . . I just remember holding him as an infant, and it would feel like we were one, you know? I'd have him in my arms and I just felt like we were one. And I don't know whether it was because he w a s . . . my first child, or what I really

Illness and Obligation

hoped for him. What I hoped for all of my children [was] for them just to be happy, because as a child I had a wonderful mother, a wonderful mother, but I was afraid a lot. I was unhappy a lot. And I just did not want that for my children.

Aside from the particular bond that arises from giving birth, Leslie felt that her special affinity with Mike comes from her own troubled childhood. While Bob grew up in a "Leave it to Beaver... adorable little white house in the country [and] never heard his parents argue . . . I believe that my father was mentally ill. My father did dreadful things [and] I was afraid of him." As a result, Leslie believes she feels Mike's pain in a way that Bob cannot. She told me that "this illness, this pain that he's in, it's unbearable to me. His pain is my pain.... My husband doesn't see it like that and finds it hard to understand how I can feel it so intensely.... I think he gets my son's pain [but] he doesn't internalize it the way I do." Leslie's inability to distance herself from the caretaking role has created difficulties in her marriage. It's been really hard on my relationship with my husband.... At the beginning it drew us closer, that horrendous time when we had to get the court order, and they dragged him out of the house in handcuffs. We were just so close, we just held each other, and he cried and I cried, and we said, you know, "We have to hold on to each other." And we were so close. But now, it's sort of a wedge, because ... it's much easier for him to separate it. You know, he goes to work; he can put Mike out of his mind when he goes. Thank God he can do that. I mean, he's under a lot of stress at work. But I can't seem to ever do that.... I've tried to explain it to him. It's part of me; he's my child. I feel like I just can't divorce myself from it. And I know my husband takes it personally.... I've let it come between us.

Mental illness is a contagious disease in its effects on others. After three years it had dangerously raised the temperature of Leslie's marriage and she is afraid that her relative neglect of Andrea

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and Josh could spawn permanent resentment. In describing the spread of the disease, Leslie noted that Andrea's "serious relationship" with a boyfriend ended because "[He] just can't handle what's going on with [our] family." Further, because she worries about the genetic inheritability of schizophrenia, Leslie "truly hope[s] that Mike never has children." She also said, "I always used to think ... I'd love to be a grandparent, but now I'm thinking 'I'm not sure I want to have grandchildren. I'm not sure that Josh and Andrea should have children,' [although] I would never tell them that." The transmissibility of mental illness is, however, most obvious in its impact on Leslie herself. She admitted to me with some hesitation that her own depression had grown to the point where [she] "actually felt suicidal." Although she has suffered from periods of depression in the past, Leslie understands that her current debilitating insomnia is intimately connected with Mike's plight. When I asked about her capacity to distance herself from Mike's illness, she told me, "Oh, I have a very long way to go, a very long way. . . . [Right now] I feel like I will drown... if I don't get a little more [distant].... [But] I'm his mother. It's very, very difficult for me not to be there." Intellectually, Leslie may understand the wisdom of gaining distance from her son's problems. However, the prescription to withdraw from a child's trouble is emotionally counterintuitive. Leslie cannot easily accept that profound empathy for her child's pain might be an obstacle to greater wellness. Numerous interviews affirm that it is an exceedingly hard lesson for any mother to learn.

Over a three-year period I listened to many parents like Leslie talk about the heartache associated with a child's mental illness. I have also interviewed children of emotionally sick parents, spouses with a mentally ill partner, and siblings of those suffering from depression, manic-depression, or schizophrenia. As with Leslie, each has a unique story to tell about what it is like to care for a sick family member. Every relationship poses distinctive challenges as individ-

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uals struggle to understand the pain of another's illness and its consequences. At the same time, my lengthy conversations with the family members of people with a major mental illness reveal strong regularities. Caregivers must negotiate the boundaries of their involvement with the sick, and, in their efforts to do this, there are striking similarities that transcend the particularities of each circ*mstance.1 My central purpose in this book is to illuminate these commonalties. I am most primarily interested in how family members construct obligations to someone with a serious emotional illness and then deal with the inevitable difficulties in honoring their commitment. A book's integrity requires that its author approach a fundamental question or problem that provides a consolidating theme from beginning to end. Substantively, this book is about the social tango between emotionally ill people and those who try to help them. In an even more encompassing way, the difficult task of caring for a sick person provides a conceptual space for examining the essential nature of people's obligations and responsibilities to each other. Nearly every general theory concerned with understanding social order assumes that expectations of reciprocity and exchange constitute the essential foundation of organized society. "Obligation," the theorist Georg Simmel wrote, "belongs among those 'microscopic,' but infinitely tough threads which tie one element of society to another, and thus eventually all of them together in a stable collective life."2 In this way, the relationship between sick people and their caregivers exposes the limits of obligation, responsibility, empathy, understanding, and sympathy in all relationships. This study of family caregivers, therefore, speaks to no less a question than "What do we owe each other?"3 The relationship between sick people and those close to them may be the quintessential case for thinking about the moral and social foundations of all human relationships. Severe illness, because it so thoroughly disrupts family life, calls attention to the taken-for-granted, normally invisible boundaries of social relationships. Prolonged illness makes demands on a child, parent, spouse,

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or sibling that test the relative strength of the ties that bind us together. In a beautifully written book, based on her experience with "chronic fatigue syndrome," Kat Duff wisely advises that "Not only is it better for the sick to be left alone at times, it is also better for the well to leave them at times. Healthy people can be contaminated by the gloom and depression of the ailing if they come too close or have too much sympathy."4 The accounts in this book will show that sustaining an appropriate level of involvement with a mentally ill child, parent, sibling, or spouse is extraordinarily difficult. Shortly into this project, interviews of the sort I did with Leslie made me realize that an exclusive focus on the purely social mandates of duty, responsibility, and obligation would be incomplete. The sixty conversations forming the core of this book affirmed the extraordinary power of love in sustaining ties with a mentally ill family member.5 Even when an ill person treated them with anger and disdain, denied that they were sick, completely disrupted the coherence of everyday life, and did things that were incomprehensible, distressing beyond measure, socially repugnant, or downright dangerous, love often kept caregivers caring. Throughout this book, therefore, one of my tasks will be to show how responsibility, obligation, duty, and love mix in different combinations to sustain family ties. Later chapters illuminate how the chemistry of moral requirements and heartfelt emotions may be different for men and women and different for parents, spouses, children, and siblings of mentally ill people.6 You will see how the ongoing construction of caregiving boundaries reflects the shifting combinations of reason and emotion, of head and heart, that connect kin over the evolving history of a person's mental illness. The novelist Umberto Eco has written that "a writer is what a book uses to make a second book." In fact, the questions I am raising about our capacity to care have evolved over several years and are intimately linked to an earlier book I wrote on depression. Speaking of Sadness arose from my own more than twenty-year history with depression.7 Based on my experience and fifty lengthy

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conversations with persons who have been diagnosed and treated for clinical depression, I wanted most primarily to understand how those afflicted make sense of their illness. My agenda centered less on matters of cause and cure than on the way depressed people impose order, coherence, and meaning onto a life situation that seems so utterly incoherent, problematic, and, literally, meaningless. I tried to describe what depression "feels like" and how those feelings must be interpreted within a social context. One of my colleagues at Boston College once described writing as like dropping a feather down a well and waiting to hear something. So, I was delighted when Speaking of Sadness was applauded in a New York Times Book Review article and have been grateful for the several opportunities to talk about my work with community groups, academic audiences, and the media.8 Most gratifying, though, has been the steady stream of communications from readers who tell me that my book has somehow been important to them. It is exhilarating to learn that I have well enough captured the phenomenology of depression so that readers see themselves in the data and understand their experiences differently because of my analysis. Nearly always the letters, e-mail messages, and occasional phone calls thank me for writing the book and then launch into a description of the writer's own experience with mental illness. Among these communications, though, have been several from people who are trying their best to help someone they care about who has been flattened by depression. In one case, I began an e-mail correspondence with a man in the Midwest, and when I casually offered the opinion that a book on the experiences of family caregivers might be worthwhile, he responded: Please, undertake such a project!! You are correct in surmising that there are a variety of stories about the "careers" of those who have a depressed person in the family.... Your descriptions of depression, depressed people and the stages of their illness were so accurate that I thought you must have been living with Linda and myself. In our

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case, the combination of Linda's depression and significant job stress (tenure-track junior faculty) actually caused me to seek the care of a psychologist. This eventually resulted in Linda entering therapy. ... I learned two things from my brief course of therapy that were of significant comfort to me. One, I did not cause Linda's depression. ... Two, I cannot fix Linda's depression. No amount of love will result in a cure. Realizing this... [has] allowed me to continue to care for my wife, but not to be consumed by her illness. Essentially, I have given myself permission to avoid having my own life destroyed by depression. This has resulted in a much better degree of communication and honesty between my wife and myself and, strange as it sounds, our marriage is actually stronger now that I "care" less. I would bet that spouses and children of depressed people have as diverse a group of stories as the depressed themselves.

Even with letters of this kind, it took reading a wonderful book by Arthur Frank to get me thinking seriously that Speaking of Sadness told only half an important story.9 Frank's book The Wounded Storyteller is about the need of ill people to tell their narratives as a way of reconstructing the "map of their lives." His thesis is that storytelling is a way to create order from the chaos generated by serious illness. At an early point, Frank, who previously had written a book on his experience with cancer, explores the social nature of all illness narratives since they presume an audience of some sort.10 An illness narrative is told to someone. There really is no such thing as a self-story because stories are inherently social productions. That is, all self-stories are really self-other stories. In the concluding paragraph of his first chapter, Frank makes the following observation about those who bear witness to and try to help sick people: The voices of the ill are easy to ignore, because these voices are often faltering in tone and mixed in message.... These voices bespeak conditions ... that most of us would rather forget our vulnerability to. Listening is hard, but it is also a fundamentally moral act.... [I]n listening for the other, we listen for ourselves. The moment of

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witness in the story crystallizes a mutuality of need, when each is for the other.11

Throughout his book Frank examines the difficult relationship between sufferers of any illness and those who care about them. Anyone who cares for a sick person becomes implicated in their sickness. In this way, as affirmed by Leslie's story and by my Midwestern Internet acquaintance, all illnesses are potentially contagious in the sense that the stories of sick people become deeply woven into the biographies of those who feel a commitment to them.12 Our social connections are secured by the stories we tell each other about our lives; they are the medium through which lives become intertwined. Recently, I read the same idea expressed in Lauren Slater's eloquent book about mental illness called Welcome to My Country. Slater writes, "I don't know at what point one can call a story truly one's own, where the boundaries between one mind and another meet.... Perhaps narratives are the one realm that cannot ever . . . be confidently claimed by any individual."13 As I read Frank's descriptions of the kinds of narratives told by wounded storytellers, I kept thinking about wounded listeners. It's not that this was the first time I had considered the difficulties of those who must listen to sick people or observe their travail. At several points in Speaking of Sadness I wondered about the effects of my own depression on my family. Early in the book I wrote, "I have worried a great deal over the last two decades about the influence on my children, a son now 23 and a daughter 20, of growing up in a household with a father who was often unreasonable, crazily irritable, and too often inaccessible. It is also nearly astounding that my wife has not left me." Still, the plight of those who listen, watch, and try to help emotionally ill people had been only at the periphery of my thinking. The publication of Speaking of Sadness influenced my life in another unanticipated way that sensitized me to the circ*mstances of those who feel obliged to listen to sad tales of emotional distress. People who know my work sometimes seek me out for

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conversation about their troubles, believing, I suppose, that I have some kind of special expertise to share. As the author of a book on depression, I have been unexpectedly cast into the listener role. These recent experiences have made me evaluate, if only as a practical matter, my moral obligations to those who wish me to hear their stories. To appreciate the contours of my new listening role, consider my relationship with Helen, one of my undergraduate students. Helen became my advisee a few years ago and over time we came to share parts of our lives. Discussions about themes in Speaking of Sadness led eventually to confessions about her own long-term emotional distress, pain she only recently could name as depression. Although I made it perfectly clear that I am not a therapist, I was still somewhat worried about having crossed the always unclear teacher/student boundary. Still, I enjoyed the conversation because Helen is bright and had interesting things to say about illness and because she expressed gratitude for being able to freely share her thoughts. The shift from the democracy of intellectual talk about emotional pain to my more purely listening role followed the downhill slope of Helen's love relationship at the time. The process of her breakup with a boyfriend precipitated her emotional breakdown. As things grew worse Helen began to see a psychiatrist and shortly thereafter started on a "trial" of psychotropic drugs. Rather than reducing my contact with her, Helen's encounter with her doctor and the "medical model" of mental illness only generated a barrage of questions about pills, biology, and psychiatry. If her concerns were exclusively the product of confusion about, say, the meaning of taking antidepressant medications, it would not have been especially difficult to meet her needs. Increasingly, though, Helen's unfolding narrative was of the sort that Arthur Frank has called a "chaos story." Chaos stories are the hardest to listen to because there is no rational thread to them—they are constituted by a flood of feelings that words inevitably fail to express. "The teller of chaos stories is, preeminently, the wounded storyteller....

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The person living the chaos story has no distance from her life and no reflective grasp on it. Lived chaos makes reflection, and consequently story telling, impossible.... [T]hese stories cannot literally be told but can only be lived."14 On many days Helen would appear at my office door early in the morning after another sleepless night, looking drawn and literally shaking with anxiety. In that state she would tell me, "I feel like I'll go crazy if I'm alone today. I just can't bear to be alone." Such moments require decisions and mine was to let her camp out in my office for a few hours until she calmed down. In making this decision I had to somehow balance our conversational history, our teacher/student relationship, my compassion for her pain, the immediacy of her needs, and my faculty responsibilities. Most of the time I felt that the choice to allow use of my office as a haven, as a refuge, was the right one. I sometimes marvel at the fact that after dealing with depression for more than two decades, spending years going to therapists of one sort or another, and then writing a book on the subject, I can think of little else to do but listen in the face of another person's pain. I may know more than others about regularities in the depression experience, but I have no great wisdom, no magic words to pass along to people like my student Helen. When she tried to choke out the circ*mstances of her life that were making her so miserable, I felt paralyzed. Comments meant to comfort—"Just try to hang in there. It does get better."—sounded inane to me even as I said the words. The combination of personal reflection, communications from family and friends of sick people, books on the experience of illness, and my own bewilderment about how best to respond to others in emotional pain strengthened my conviction that caregivers to mentally ill persons have important, untold stories to tell. I decided that one additional way to test the prospects for a book on the subject would be to return to a self-help group that I had attended regularly a few years back. Although most of those attending the weekly meetings of

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the Manic Depressive and Depressive Association (MDDA) are victims of depression or manic-depression, there is an affiliated "Family and Friends" group. I hoped that because I had previously been an MDDA member and, more recently, had been a guest speaker, that the Family and Friends group would let me attend as an observer.15 Happily, they said "yes" to my proposal and I have been a regular in the group for more than three years. The stories I hear in this forum absolutely astonish me because of their sheer poignancy, courage, and drama. Even after completing the work for this book, I have maintained my ties with the group because I now view several of the people there as friends and because I want to know how they are faring in their ongoing struggle to help a parent, child, spouse, or sibling with a disastrous life condition. At first, I just felt overwhelmed at hearing the details of each person's account. On any given evening I might hear about the unimaginable pain surrounding the decision to have a child removed from one's home by the police, the powerlessness of visiting a spouse or child in a hospital who is so muddled by powerful medications that he or she can barely speak, the shame that accompanies hating someone you love because of what their illness has done to you and your family, the guilt that lingers from the belief that you might somehow be responsible for another person's descent into mental illness, the confusion associated with navigating the Byzantine complexities of the mental health system, the fear associated with waiting for the next phone call announcing yet another suicide attempt by someone close to you, the disappointment that a talented son or daughter may never realize even a fraction of their potential, the exhaustion that accompanies fulltime caregiving, or the frustration of being unable to take even a brief vacation. Pain, powerlessness, shame, guilt, confusion, fear, disappointment, exhaustion, frustration: these emotions are the currency of conversation among the Family and Friends group members. Whatever might be the distinctiveness of their individual circum-

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stances, the twenty-five or so regulars at each week's meetings are struggling with the same underlying concerns. They come to find solace in the company of others who understand their agony, to share coping strategies, and to gird themselves for the inevitable bouts with the mental illness monster. Underneath all this is the matter of responsibility. Nearly always during the two-hour meeting, someone is asked to recite what I now think of as the group's "Four Cs Mantra." Heads nod when one or another member says these familiar words: "I didn't cause it. I can't control it. I can't cure it. All I can do is cope with it." These are folks trying to incorporate the wisdom of the Four Cs into their daily lives. I say "trying" because however many times the Four Cs are invoked, they stand in contrast to the stories that precede and follow their recitation. All agree that they need to find ways to cope. However, as each member's tale unfolds, it is also unmistakably filled with doubt about the storyteller's role in causing, controlling, and curing a loved one's depression or mania. Listening every week to the circ*mstances of the support group members persuaded me that the case of mental illness poses distinctive caregiving contingencies. Although chronic and lifethreatening illnesses of any sort will generate confusion, ambiguity, complexity, and anxiety about setting proper boundaries with a sick person, these problems are compounded in the case of mental illness. For example, rarely will patients question the diagnosis of such serious physical illnesses as cancer or heart disease. In contrast, those diagnosed with depression, manic-depression, or schizophrenia often vigorously deny the disease label. Unlike most physical illnesses, caregivers to the mentally ill (especially parents) must often contend with the possibility that they are somehow implicated in the creation of the other's problem. Finally, despite their best efforts, caregivers are sometimes treated as though they were an enemy by their loved one. In these ways, mental illness poses problems of greater interpretive complexity for caregivers than even the most tragic physical illnesses. In some respects, each individual story I have heard over the last

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three years, either in the Family and Friends group or tape-recorded one-on-one, is unique. Mental illness takes multiple forms and disrupts family life in countless ways. No doubt, the person telling each story also feels that no one in the world knows precisely what they are going through, and they are right in that feeling. Everyone in pain is, in an existential sense, alone with it. No one can actually feel another individual's pain; all they can do is imagine it. At the same time, a sociological angle of vision presumes that there are consistencies and uniformities in even the most personally chaotic life experiences.16 The explicit content of each person's caregiving narrative might be different, but their experiences, I want to argue, display common, underlying forms. In the last decade or so, a number of personal memoirs about mental illness have been published. Most of these books17 recount what it is like to be ill, but, recently, family members of emotionally ill persons have begun to tell their stories.18 As valuable as these accounts are, they can only hint at features of caregiving that transcend the particularities of a single case. The great advantage of my three years of listening in a self-help group and then systematically analyzing sixty lengthy interviews is that such a methodology lets me see overarching and repeating themes, patterns, or social forms in all the cases. Kai Erikson provides a nice example for illustrating how a sociological perspective is necessary to see social patterns that would be missed if we only look at things "up close and personal," as they used to say on Wide World of Sports.19 He has us imagine that we are walking along 42nd Street near Times Square. At the street level we can clearly see the faces of thousands of people who pass us. We can see their individual expressions, their particular body idioms, their apparent ages, and so on. At this range, they normally appear to take no notice of anyone around them. Each stranger appears as a solitary atom, buzzing along in a thoroughly independent way. Were we, however, to climb to the roof of a nearby twelve-story building and look down on the flow of sidewalk traffic, we would

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see an extraordinary thing. It is true that from this vantage point we miss the specifics of each individual. We would, though, witness a miraculous pattern—thousands of people moving along the street in an incredibly well-organized, efficient, and cooperative fashion. Moreover, each person on the street would likely be wholly unaware of their contribution to the web of behavior necessary to sustain such an enormously complex social order. It is as if each pedestrian is guided by an invisible social force, a kind of social gravity, about which they have only the vaguest awareness. I am proposing that most persons grappling with someone else's suffering, like street pedestrians, are only dimly aware of how widespread, shared, and culturally prescribed are their feelings about caregiving, feelings that they imagine are unique and incomparable. The story that began this chapter is absolutely distinctive in its details. Yet, as the following chapters will show, Leslie's account also displays social processes, emotions, confusions, and challenges that cut across the sixty interviews I conducted for this book. Like all the caregivers who will speak in the pages to come, Leslie engaged in ongoing interpretations of how to "draw the line" between herself and Mike, her son. Having spoken with her recently, I know that Leslie is still trying to find a workable balance of involvement and distance in her son's life. Her account also illustrates that the need to care is propelled by emotions of both obligation and love. The shortened version of her caregiving biography strongly hints that parents feel a different combination of love and responsibility than do spouses, siblings, or the children of mentally ill people. As well, the disruption in her marriage caused by Mike's illness suggests that men and women create a different calculus of caregiving. Finally, like everyone I interviewed, Leslie had to learn how to navigate within a set of complicated mental health bureaucracies. The Burden of Sympathy is organized around the central, repeating, and common dimensions that I was able to discern in my interviews with caregivers. In large measure, the boundaries of my writing are determined by the accounts of my informants. I have tried to organize my materials to best capture the shared features

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of their experiences. I expect that caregivers who read this book will see their own lives reflected in the stories of others. If I have done my work well—if I have been a good sociological guide—the analysis of interview materials in each chapter will provide readers with new perspectives on their own caregiving struggles. In a fashion, I see this whole enterprise as a storytelling venture. I can only offer my theoretical accounts in the chapters to follow because I have had the good fortune to hear so many compelling stories like Leslie's. That being so, let me conclude this first chapter by briefly describing the blueprint I have in mind for telling you how I have made sense of their narratives. Chapter 2, "Bearing Responsibility," elaborates the interpretive task most essentially connecting all sixty people with whom I spoke. All caregivers must somehow negotiate the dialectic of closeness and distance with an ill person. They puzzle about how best to "draw the line" between themselves and a sick person. The guiding question for Chapter 2 asks, "What features of the situation do family members take into account as they try to construct boundaries of obligation between themselves and the mentally ill person in their lives?" As throughout this book, I conceive the relationship between caregivers and patients in processual terms. The way caregivers think about their obligations shifts over the course of their "joint career" with the ill person. I identify four interpretive junctures in the evolution of caregivers' consciousness about responsibility. They move through an initial period of learning about the illness and hoping for a quick resolution. Those new to mental illness and the caregiving role rely heavily on doctors to solve what they hope will be a limited and curable problem. Caregivers must, however, eventually confront the reality that a loved one's illness will not disappear. This recognition generates new expectations for themselves and the person in their care. At a point, nearly everyone interviewed reassessed how much responsibility ill persons must themselves bear for their own condition. If, as the Puritans believed, "God helps those who help themselves," caregivers eventually adopt a secularized version of

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that dictum—"Caregivers should help only patients willing to help themselves." Finally, respondents often reach a critical moment when they must decide whether their own health and identities have become so compromised that they can no longer maintain a commitment to care. Chapter 3, "Managing Emotions," continues the themes of the previous chapter. Just as there are predictable changes in feelings of responsibility over time, the interviews reveal comparable and patterned transformations in caregivers' emotions. Although sociologists have always understood feelings of obligation, responsibility, and duty to be the moral cornerstones of society, little attention has been given to the ways such feelings are evoked, interpreted, managed, and acted on in everyday life. Every respondent in this study felt the emotions of fear, confusion, hope, compassion, sympathy, love, frustration, sadness, grief, anger, resentment, and guilt. However, there are consistent changes in the relative subjective significance and intensity of each of these emotions over time. Prior to a firm medical diagnosis, caregivers experience what I call "emotional anomie." They are fundamentally confused by the behaviors of a family member and quite simply don't know precisely what to feel. Such anomie reflects the sheer bewilderment of a life that has moved rapidly from coherence and predictability to chaos and disorder. Eventually, a diagnosis of depression, manicdepression, or schizophrenia provides a medical frame that clarifies the circ*mstance of caregivers and provokes feelings of hope, compassion, and sympathy. At a certain point, initial optimism that their loved one's mental illness can be fixed gives way to a sense of its likely permanence. The frame of permanence, coupled with doubts about the ill person's inability to control their objectionable behaviors, ushers in more negative feelings of anger, resentment, even hate. Some of the respondents eventually conclude that none of their efforts can successfully change things. Such a recognition can sometimes lead to an acceptance of the other's condition. Acceptance, in turn, liberates caregivers from the earlier burdensome belief that it is their duty to somehow solve the problem.

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One of the most essential ideas in social psychology is that a person's various statuses influence how he or she defines and experiences the world. In Chapter 4, "Family Ties," my goal is to show how feelings of obligation are tied to one's "social location" within the family—as parent, child, sibling, or spouse. This chapter also departs from the style of data presentation in Chapters 2 and 3. Although allowing lots of people to speak is an effective way to display caregiving commonalties, it is also important to provide you with a fuller sense of caregivers' lives. Thus, in Chapter 4, I will describe three "case histories." To complement Leslie's narrative—a mother's story—I want to introduce you to three other people whose interviews reflect the distinctive experiences of children, siblings, and spouses. Jason's mother had her first psychotic break when he was seven or eight. His is a story of childhood terror and feelings of betrayal by a father who he believes did not sufficiently protect him. Now, as a thirty-year-old, Jason is still trying to heal from the sense of abandonment that inevitably arises when children cannot count on parents to nurture them. Angie still mourns the alleged suicide of her brother four years before we spoke. Her account highlights a sister's struggle to decide just how much she owed to her chronically ill brother, her aging parents, and herself. Finally, I'll tell Gail's story. Shortly into their five-year marriage, Gail's husband was diagnosed with manic-depression. Although she remains firm in her resolve to help the man she loves, Gail must also contemplate the circ*mstances that would justify leaving her marriage. I earlier mentioned that the members of the Family and Friends support group I attend each week share an illness ideology of sorts. The Four Cs have it that caregivers did not cause the problem, can't cure it, have no control over it, and can only cope with it. In Chapter 5, I examine more closely the first three Cs—cause, control, and cure. Although group members appear largely to embrace the Four Cs, it is quite another thing to honestly believe that they had absolutely no role in causing it and that they can do nothing to cure or, at least, control a spouse's, child's, parent's, or sibling's

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illness. My examination of cause, cure, and control, so central to the talk of caregivers, proceeds from the observation that all human beings must create theories about significant features of their lives. Just as we construct theories about such matters as parenting, education, crime, and falling in love, caregivers must construct a usable theory about the causes of mental illness and how best to respond to it. In Chapter 5,1 describe how the people I interviewed try to create practically useful theories about cause, cure, and control. The fourth C is coping. In a fashion, every chapter in this book is about the efforts of family caregivers to maintain personal equilibrium as they deal with the horrible fallout from another person's mental illness. However, the data and analysis throughout the first five chapters center largely on the day-to-day, face-to-face relationships of ill people and family caregivers. In Chapter 6, "Surviving the System," my analysis shifts as I am more self-consciously guided by the simple sociological truth that all of us are bounded by social structures that powerfully structure our lives. To live in a society means to be embedded within a dense network of institutions that shape our choices and often literally affect our "life chances."20 A catastrophic mental illness propels sick people and their families into the mental health system. Suddenly, caregivers must cope with police, the court system, social workers, doctors, hospital administrators, government agencies, and insurance companies. Rather than diminishing their pain and confusion, the system too often bewilders and marginalizes family members. Chapter 6 follows the joint "institutional careers" of patients and families. As in other chapters, careful reading of the interview materials suggests a sequential process. At some point it becomes undeniably clear that a person is in terrible trouble, that there is a full-blown crisis to manage. If an ill person refuses treatment, the crisis may require family members to seek the "help" of community crisis teams, the police, and the court system. Every person interviewed for this book cared for a child, spouse, sibling, or parent who eventually required hospitalization. Although providing them

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initial relief, caregivers soon discovered that hospitalization would not solve the problem. Hospitalization also meant entering the domain of professional "experts." Caregivers often felt ignored by psychiatrists whose therapeutic perspective typically did not extend to family caregivers. Finally, nearly every person I interviewed expressed anger about the incredible difficulties in securing private insurance or government benefits. Chapter 6, therefore, expands on the system-related tasks of managing crises, negotiating hospital bureaucracies, dealing with doctors, and finding ways to pay for treatment. Throughout this first chapter I have been claiming that the subject matter for this volume permits exploration of such essential questions as: "What do we owe each other?" "What are the moral boundaries of family relationships?" "To what extent are we bound to care for each other?" "What are the limits of sympathy in dealing with another person's trouble?" "What social contingencies impinge on our responsibilities and obligations to each other?" Such questions could not be any more fundamental to the sociological enterprise since inquiry into the nature of social obligations is tantamount to asking "How is society possible?"21 Reasonable approaches to these questions cannot, however, be divorced from history and social structure since, as C. W. Mills noted over forty years ago, "the biographies of men and women, the kinds of individuals they variously become cannot be understood without reference to the historical structures in which the milieus of their everyday lives are organized. Historical transformations carry meanings not only for individual ways of life, but for the very character—the limits and possibilities of the human being."22 The last chapter, "Caring in Postmodern America," departs from the interview data and offers a general argument about how the distinctive values of contemporary American society, in contrast to earlier historical eras, shape our consciousness about caring for others in trouble. I consider how the imperatives of the so-called "postmodern" world impinge on the possibilities of deep and caring human bonds, how the progressive loosening of social bonds in

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America may have diminished our felt obligations toward people who are suffering from all kinds of ills. Certainly, available sociological writing on America's ethic of individualism provides ammunition to argue that social connections, and thus social obligations, are becoming increasingly loose and nonbinding.23 Some observers, like my colleague Charles Derber, view rampant individualism as a kind of social virus that has for decades been eroding America's national character.24 Early in his book The Wilding of America Derber describes the Ik, a Ugandan people studied by the anthropologist Colin Turnbull about twenty years ago. The Ik, living in a hostile physical, economic, and political environment, have become a loveless people for whom personal morality does not extend beyond crass self-preservation. Because each person in Ik society regards every other person, even family members, as competitors for scarce resources, they have thoroughly lost all capacity for empathy with the suffering of others. It would be melodramatic to identify Americans too closely with the Ik, but perhaps we are a people who have become more Ik-like. In contrast to those apocalyptic visions that see America's ethic of expressive individualism as eradicating empathy, I feel that the accounts of the sixty people interviewed for this book allow a more optimistic view. With a few exceptions, my conversations were with people who have "hung in there." Their route has been chaotic, unspeakably painful, and often damaging to their own physical and emotional health. Still, they have thus far stayed the course! Precisely because of their commitment, some readers, and I imagine fellow sociologists, will complain that these folks are unrepresentative. They might say that these days the more typical response of American family members confronted by severe mental illness is to withdraw emotionally or "cut out" altogether. Of course, there are no good statistics to tell us just how representative a sample I have. Let's imagine, though, that those who speak in later chapters are unlike most Americans in their dedication to an emotionally ill family member. I say, "All the more reason to study them!" Robert Bogdan and Steven Taylor, affiliated with the Center on

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Human Policy at Syracuse University, have been calling for a "sociology of acceptance." They point out that "for a quarter century sociologists have concentrated on stigma and the labeling and rejection of people with negatively valued physical, mental, and behavioral difference."25 While Bogdan and Taylor do not dispute that "deviant" people are often silenced, abandoned, and shunted off to the margins of society, their studies of profoundly disabled people reveal that there are some people who form genuine, deep, loving, and enduring friendships with them. They argue that it is precisely because intimate, accepting ties between "normal" people and those with profound disabilities are uncommon that they ought to be studied. By learning about the basis for social acceptance when we might not expect it, we may be better able to foster it. Similarly, I hope that by showing how the individuals I studied continued to care under difficult circ*mstances, it will make it easier for others, faced with mental illness at home, to do so also. Aside from providing the blueprint for this book, Chapter i has stressed the importance of life stories because of their potential to transform both the storyteller and the listener. In a truly lovely and moving memoir recounting his lifelong relationship with his brother Robert, who has spent most of the last thirty years in and out of psychiatric hospitals, Jay Neugeboren explains what kept him at the task of writing their joint story. He puts it this way: I'm not interested in writing about [Robert's] life in order to exploit him or embarrass him, to find villains or designate blame, to come up with answers to how and why he's led the life he's led, or to what mental illness is or is not and what we can do about it, but in order—simply and most of all—to tell his story as best I can, and thereby be a witness to his life, in all its complexity, uniqueness, hope, and despair—in all, that is, that makes it fully human.... As painful and grim as any experience, or any life may be, to be able to transform it into story, like the act of remembering... can offer us a kind of consolation—and, sometimes, of joy—unlike any other.26

Illness and Obligation

This book relies on lengthy conversations with people who have shared the double story of someone close to them with a mental illness and their own efforts to stand by them. Of course, it is practically impossible to know where one story leaves off and the other begins because the two become so bound together. Many of the people with whom I spoke thanked me for the opportunity to tell their stories, often expressing that there is a healing and new understanding that comes from articulating their experiences. I'm glad that the research work I do allows a kind of catharsis for many of the people who shared such personal and difficult parts of their biographies. I consider their stories as precious gifts. And precisely because there is a sacredness to what they have told me, I have felt a special obligation as a writer to use their narratives in a way that honestly conveys the complexity, courage, heroism, and humanity associated with caring for someone with a mental illness. I know that listening to their accounts has vastly deepened my understanding of what it means to maintain commitments. I hope that I have honored their stories by using them in a way that expands your capacity for empathy, tolerance, and caring.

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TWO

Bearing Responsibility I just did it because that's what I was supposed to do. . . . What the hell are you supposed to do if you have a sick parent in the house . . . and you're part of the family?... What are you supposed to do, throw them by the wayside?... I mean, I love my parents

I did

it out of love and caring and [as] a son who was, you know, the oldest. EDUCATION ADMINISTRATOR, age forty-three, son I know... my limit is reached [when] all I think about is ... getting her [mother] in the car and driving off a cliff because I can't stand to be with her and I feel she can't do this to people anymore.... In a way my identity disappeared because I was just sucked into that blackness and weirdness. INSURANCE A D M I N I S T R A T O R ,

age forty-six, daughter/sister

When Nancy announced that she and her husband were actually finalizing plans for a two-week vacation to Florida, her Family and Friends supporters spontaneously applauded. The topic of vacations, Nancy's in particular, was often discussed in the MDDA group. The conversation was always about the difficulty family members had in leaving home, even for a week or so, because they couldn't stop worrying about what might happen in their absence. Parents tried to persuade each other that since they could not stop their ill children from unraveling even when close by, they logically 35

THE B U R D E N OF SYMPATHY

ought to be able to go on vacation. However, many, like Nancy, could not bring themselves to do it. In those conversations Nancy often expressed the group's collective sentiment when she said, "I would never forgive myself if anything were to happen while I was gone." Like others, Nancy had real cause for worry. Her forty-twoyear-old daughter had been first hospitalized two years earlier after a suicide attempt left her comatose. Diane survived, although with brain damage, and, still suicidal, has been in a hospital ever since. At age seventy-two, Nancy is especially distraught because "these are the years that, you know, were supposed to be our good years, and she has totally destroyed them." Nancy was among the first persons I interviewed for the book. After hearing bits and pieces about her life, I was not surprised that she lived in a well-kept, modest, middle-class neighborhood. Her home was small, but obviously maintained with great care and love. It turned out that her husband Frank was there, and Nancy asked whether he might join our conversation. I was glad to talk with both of them since experience has taught me that valuable insight often comes from interchanges between spouses during an interview. After we finished our interview, Nancy and Frank gave me a tour of their home. They were especially proud of an addition that Frank had built himself. It had been a separate apartment for Diane, who lived with them before she tried to take her life. They hoped that she would one day be back, but this seemed unlikely because of the seriousness of her illness. It was also unlikely since, as I learned during our talk, Diane's psychiatrist did not want her returning home, believing strongly that she needs to gain independence from her parents. Individuals are always eager to convey in detail those parts of their stories that most essentially define events for them. These symbolically powerful themes give each interview a distinctive flavor, tone, or motif. My talk with Nancy and Frank centered on Nancy's struggle to "let go" of her daughter, to loosen her emotional bond with Diane. The trauma of the previous two years, conversations with Diane, and consultation with her doctors persuaded Nancy

Bearing Responsibility

that "if Diane is going to survive I've got to let her go and the only way I can let her go is not to have her here." Nancy's problem, though, as reflected in the vacation issue, is that she simply can't let go; her heart won't cooperate. Throughout the interview she offered small details that helped me to understand her difficulty in drawing firmer boundaries between herself and Diane. For example, a ritual has evolved that requires Nancy to sit by the phone each day, waiting for her daughter's call. She would like to be freed of this obligation, but so far cannot sever even this thin thread. When I gently pushed her to explain why she found it so difficult to make even a modest change in the telephone routine, she told me: Letting go to me would be having the phone ring at ten minutes past nine in the morning and not answering and saying [to myself], "I'm not going to talk with her this morning." But would I be able to do it? I don't know. And if I tried it, then I would feel guilty the rest of the day, because if she called back at one o'clock and she had been sick, I'd never forgive myself for not having talked to her.. . . I know what's needed, but, you know, in my heart I can't do i t . . . . I'm very aware that [the bond] needs to be broken, but either I don't want to or I can't. One or the other. And I think basically it's that I don't want to.

Nancy and Frank did finally take their vacation. They "checked in every few days just to make sure that everything was all right." When she returned to the Family and Friends group, everyone wanted to know how things went. More congratulations were offered to Nancy for taking such a big step in gaining a measure of control over her own life. The conversation about Nancy's triumph lingered because everyone understood it as an object lesson. Whether or not they worry about taking vacations, everyone I have heard talk in the group and in my interviews is trying to find a healthy balance between involvement and distance in their relationship with an ill family member. All of them would agree with

THE B U R D E N OF SYMPATHY

Nancy who, at several points, during our interview said, "I think the hardest part [of caregiving] is not knowing whether what you are doing is right or wrong." This chapter focuses on the central theme of Nancy's interview—indeed, of this whole enterprise. I examine how the people interviewed assess the nature of their obligations to ill children, spouses, parents, or brothers and sisters. My analysis throughout this chapter is directed at understanding what family members take into account as they try to set obligation boundaries between themselves and the mentally ill person in their lives. Both my theoretical approach1 and the data collected requires that we understand caregivers' assessments about proper involvement2 with a mentally ill person as a process over time. It is a process characterized by intense efforts to make sense of another's illness and to negotiate how best to help them without becoming engulfed by their misery.31 will show that the kinds of boundaries that seem appropriate at the outset of an illness are quite different from those established at later points in a caregiver's evolving "joint career" with an ill person.4 As is so frequently the case when analyzing qualitative data, the central metaphor that animates my thinking comes from the words of the respondents themselves. With extraordinary regularity, the people interviewed spoke about their difficulty in drawing the line between themselves and an ill spouse, child, brother, or parent. We learn from their comments that decisions about how and where to draw responsibility lines are surrounded by intense emotions, equivocation, uncertainty, and ambivalence. Along with the kind of bewilderment and consternation intrinsic to relationships with mentally ill people, decisions about how to draw boundaries are compounded by a widely held cultural prescription that overinvolvement with dependent people might properly be considered a disease. The existence of a whole social movement in America dedicated to avoiding "enabling" and "codependence" is striking evidence of Americans' confusion about the permissible limits of human closeness.5 Co-dependency can arise as a pathological condition only in a society that fosters deep ambivalence about the value of extensive ties.

Bearing Responsibility

This chapter, then, is primarily about how sixty people draw and then redraw appropriate boundaries between themselves and a sick family member. Their stories attest to the near impossibility of arriving at a line that makes sense and is workable over time. Eventually, respondents reluctantly realize that whatever line they draw, like the proverbial line in the sand, is transitory and easily blown away by the shifting and wholly unpredictable winds of mental illness. Still, unless they abandon the relationship altogether, family members have no alternative in the face of another's emotional illness except to try over and again to find a balance between the requirements of care and the maintenance of their own well-being. My goal is to reveal regularities in caretakers' thinking, feeling, and behaving as they try to determine an appropriate level of commitment to an ill person. The question directing my analysis in the following pages asks, "What features of the situation do family members take into account as they try to construct boundaries of obligation between themselves and the mentally ill person in their lives?" The interview materials suggest four overlapping dimensions that frame the relationship between caregivers and family members. While each of these four experiential moments generally occurs sequentially, it would be a mistake to understand them as operating in an absolutely stage-like fashion. Rather, I view these interpretive junctures in family members' illness careers as bearing a simultaneous, dialectical, and mutually transformative relationship with each other. I offer them as a framework for economically presenting the data and, thus, for looking at key elements of consciousness shared by nearly all the respondents in this study. They are: 1. HOPING AND LEARNING—Those new to mental illness and the caregiver role rely heavily on medicine to solve what they hope will be a limited and curable problem in the life of a loved one. 2. REVISING EXPECTATIONS—Most caregivers must eventually confront the reality that a loved one's mental illness will not disappear. This recognition, in turn, generates new expectations for both the sick family member and themselves.

THE B U R D E N OF SYMPATHY

3. ASSESSING RESPONSIBILITY—A critical factor in determining their degree of obligation is caregivers' ongoing assessment of how much responsibility a sick person can and ought to take in solving their own problem. 4. PRESERVING ONESELF—At critical junctures during the course of caregiving, respondents grapple with having to decide whether their own health and identities are so compromised that they can no longer maintain a commitment to care.

Drawing the Line Eventually, as later sections will show, caregivers do withdraw support under certain predictable circ*mstances. However, as they recount their histories of caring when a family member becomes mentally ill, they nearly uniformly felt a strong obligation to care at the outset of the "trouble." Here's a sampling of the way they saw their obligations early in their caregiving careers:

I don't really see what I am doing as duty.... I mean, I know that I have a duty to make it through the snow storm to work on a bad day. I see that as duty. I see that as being a good soldier.... I won't let you down, and that kind of thing. I don't think any of those thoughts in relation to being here for him [son]. I just feel that it is very much an unfinished job.... Responsibility is deeper [than duty]. Duty—you know exactly the limits of it.... Responsibility, it's your essence. I mean, could you sleep? Could your soul rest? Would your dreams be troubled if you really didn't meet your responsibility. RETIRED BOOK EDITOR, age fifty-one, mother

My mother looks at it that I should take care of her

You know

. . . "I gave birth to her, so she owes me this life (of hers)." ... So, you know, it's one of those things. You make the decision. I guess

Bearing Responsibility

you allow yourself to feel the obligation. Because I could walk away from i t . . . but I look at it that when I go to meet my God, I don't want to have any feeling... like I didn't do everything that I could have. ACCOUNTANT, age thirty-five, daughter

I felt like I owed her that, like I should take care of her. You know, she is my mom and I felt... I mean I don't know if it was her saying it to me or me feeling it as well. I mean, I guess when I was growing up ... what I saw was my mom always taking care of other people and doing things for other people in our family. So as a child, I mean, you definitely learn these things, you know? By example, you see that, okay, this is how the world works.... You know, my mom is doing things for her mom or her relatives and, you know, it's just natural.6 RESEARCH ASSISTANT, age twenty-three, daughter

Although Chapter 4 will elaborate the issue, I should note here that the cultural mandate to care for an ill family member is not felt equally by everyone. The sociologist Candace Clark has made important observations about the connection between the social statuses of persons and the "width" of their respective sympathy margins.7 Spouses, for example, are expected to honor sympathy requests for problems that would seem too trivial in another relationship. Husbands and wives can complain to each other at length about a bad day at work, for example, and feel wronged if their partner does not pay close attention and extend considerable sympathy. The relationships between parents and children are bounded by quite different rules. In this case, the margins are asymmetrical since parents are expected to freely extend far more sympathy to their children (especially, of course, young children) than they can legitimately expect in return. In particular, mothers of sick children clearly expressed the greatest obligation to care.

THE B U R D E N OF SYMPATHY

We bring these children into the world. We give them life. We're responsible. Until the day God takes them, we are their parents, we are responsible, and no matter what. If there is an illness there, you have an extra responsibility. I really believe that and I feel that with all my heart. REAL ESTATE BROKER, age forty-five, mother

It has got to be heartbreaking to see your kid in a mental hospital. I wanted to kill myself, David, I wanted to kill myself. Do you understand that? It wasn't just because I was depressed. It was because I felt responsible and helpless to do anything and no one loved him but me in the whole wide world and my love wasn't enough. I couldn't put my arms around him and give him what he needed. I wanted to die.... I mean, I tried to bargain with God, "Take my life, fix my kid's." To this day, if God said to me, "Will you come with me now if I make them all happy and straightened out and productive and they will be all right?" I'll go, "Yes! Gladly!" You know, "[If I] never have another moment's happiness. Fine! I'll go with you!" UNEMPLOYED, age fifty, mother Although it is utterly devastating to have a child become mentally ill, several mothers nevertheless acknowledged that it would be difficult to give up the caregiving role. In one case, a mother of a child who recently became eighteen explained that she was about to experience a deep identity loss because her daughter, in the throes of a manic episode, planned to leave home against her wishes. Oh my God, how do I be her mother [now]? How do I be her mother when she is not living in my house? And now that she's hit the road, it's a real crisis for m e . . . . I had to give up the last piece of managing her life. She's eighteen and I have no more to say. And she hit the

Bearing Responsibility

road. And ... she's not safe.... As long as she was in my sphere ... I was going to manage it.... I can't do it anymore. I don't know what to do with myself. I don't know how to be her mother [now]. From the day she was born she didn't eat and didn't sleep and she needed fifteen casts and had diarrhea, and all that stuff. I've been doing that (caring for her) since the day she was born, eighteen years plus three weeks. PHYSICAL THERAPY TEACHER, age forty-nine, mother

Men appear to have a different perspective on caregiving. This "finding" fits with the frequently made observation that women have always been socialized to be caregivers and feel far more comfortable with that role than men. Deborah Tannen argues that when it comes to human relations problems, men are solution-oriented whereas women are sympathy-oriented.8 Men sometimes quickly "burn out" as caregivers. Women, on the other hand, who do not typically approach their commitment to a sick family member in solution terms, are, compared to men, normally more tolerant caregivers. Women, in other words, are often more involved caregivers than men because they are trained for that role and because their commitment to caregiving is not contingent on the eradication of the problem. Women's words about obligation sometimes contrast sharply with those of men, many of whom seem far more pragmatic in determining the boundaries of their responsibilities. Two men, for example, independently talked about how the travel demanded by their work was a welcome respite from a home dominated by a mentally ill partner or child.

I travel and that allows me some time alone with my thoughts . . . . I think it helps. I enjoy... business trips.... I enjoyed it before I really understood the full extent of my wife's disease, but it certainly helps now.... My opinion [is that] this [mental illness] is something guys handle better than women.... Guys are better at rationalizing ... [and] saying, "Yuh, I did do as good a job as I can. It wasn't a

THE B U R D E N OF SYMPATHY

great experience, but there wasn't anything else I could do about it and I've learned from it and then moved on." SALESMAN, age forty-two, husband

When I'm not around to take care of day-by-day issues, she's [wife] much stronger and much more able to do things on her own. I find when I'm away from home that I'm not worried because she seems to get her stuff together. So, I don't know to that extent whether my being there... helps her or gets in her way. I know when I travel for work—I tend to work eighteen-hour days—and, you know, go back to the hotel room when all the restaurants are closed and eat a box of crackers and peanut butter. So it's not a glamorous travel life but my mind tends to be at ease. ELECTRONICS DESIGNER, age sixty, husband

This chapter began with the account of two elderly parents, Nancy and Frank, who are grappling with their daughter's illness. Nancy did most of the talking during the nearly three hours we spent together, but when Frank did speak it was largely to say that their health and enjoyment of life would be greatly enhanced if Nancy could succeed in gaining greater distance from their daughter. Each time Nancy expressed the feeling that it would be in everyone's best interest if her attachment to Diane were less, Frank seconded the emotion. Several times, Frank and Nancy acknowledged the sharp contrast in their respective attitudes about living a life more detached from Diane. Frank was better able than Nancy to "compartmentalize" different aspects of his life. Unlike Nancy, whose energy is so thoroughly absorbed by Diane's illness, Frank told me, "I bypass it. I concentrate on other things. I'll have something on the computer I want to do and I get my mind involved in that." At one point Nancy described Frank as an "escape artist." Here is a revealing string of conversation containing that "accusation": NANCY: When we were talking [on the phone] she said: "This coming weekend you and daddy don't have to come up [to the hospital]. I'm not going to mind. You can have the weekend free."

Bearing Responsibility

KARP: So, what are you going to do? NANCY: Probably nothing, just have the weekend to ourselves. FRANK: I . . . feel liberated. NANCY: Yeah, well, of course, you are the one doing the driving. ... Several weeks ago I almost said to him, "Why don't I drive out and spend a couple of hours with Diane?" And I didn't say it because I figured if I said it once then he would say some weekend, "I really don't want to drive out." And I want him to be as much a part of our visiting her as mine is. You know, and I know he's tired. And I know that he resents it a little having to do it every weekend. But she is our child. We brought her into this world. It's up to us to take care of her while we are here. FRANK: Yeah, well they're taking care of her out there. NANCY: But we have to take care of her ourselves as mother and dad. FRANK: We've gotta take care of ourselves. NANCY: [laughing] See what I mean.... He's the escape artist. He goes downstairs to his computer.... Frank has always been able to shield himself.

FRANK: I always have something [to do]. In the past it was working in the garage, working on the cars, taking care of the lawn and all these [kinds of] things. KARP: She just called you an escape artist. Is that an accurate description? NANCY: Yes. FRANK: It could be, yeah. As Christena Nippert-Eng maintains in her provocative and insightful book about the linkages between work and home life, "All boundaries are socially constructed.... Over the natural non-order of things, we impose boundaries on everything, including our daily activities and the places and people with whom we pursue them."9 Illness is surely a social occasion that sets in motion active efforts at "boundary work." Although any boundaries that human beings construct are subject to change and renegotiation over time, illness, because of its capacity to so thoroughly disrupt the coherence of

THE BURDEN OF SYMPATHY

daily life, demands ongoing assessments about the proper boundaries between family caregivers and patients. Family members confronted with the reality of mental illness quickly learn that without constructing appropriate boundaries they risk becoming engulfed and potentially consumed by the other's illness. The inevitable task that "well" family members face is to honor the obligation and commitment they feel toward their sick spouse, parent, child, or sibling without losing their own health and self. As the following accounts will show, sustaining an appropriate level of involvement with a mentally ill person is extraordinarily difficult. Partly this is so because of the intrinsic nature of "mental" illness. Not only is the course of the illness unpredictable, but the ailing person may also act unpredictably. It is hard enough for a healthy person to imagine the pain of a person who suffers from a physical illness they themselves have never experienced. It is quite another thing to understand a person who thinks and feels in ways that seem totally incomprehensible. One respondent tried to draw the contrast between the caregiving contingencies of physical and mental illness this way: What do words mean? Words don't mean the same thing [to a mentally ill person]. Reality is not the same. You are not dealing in the same dimension. You have to understand ... what that person's illness is and what the words really mean.... What frightens me about it is that reality is different.... Mentally ill people see things that are not there, or that I don't see, [that] other people don't see, and I don't know what they are seeing. I don't know what they are going to do.... Like my mother-in-law now has cancer [and] is having chemotherapy. She is a remarkable person. But there is like no problem. She is sick, she is tired. With the chemotherapy she is getting better. She is tired, she goes to sleep. She tells you, "I feel tired now" or "I don't feel like eating" or "I am sad I lost my hair." But we are all talking in the same place. She doesn't say, "I am sad that I lost my hair" and really mean that "I want to kill you and God is going to come down and strike everyone dead in this house

Bearing Responsibility

tonight." With a mentally ill person, you don't know.... I don't really feel like mentally ill people can hurt me. B u t . . . it's like you are just not in the same place and it makes me nervous. Like I really have no control. INSURANCE ADMINISTRATOR, age forty-six, daughter-/sister

The very unpredictability of the course of mental illness ensures that the lines established between caregiver and patient at one moment may not work shortly thereafter. Ill family members may, depending on their particular problem, alternate between episodes of deep depression, mania, florid psychosis, and wellness. Moreover, each discrete episode of illness may be different from those that preceded it. In the middle of an illness episode individuals may not comprehend their problem, may create huge difficulties in their own and caregivers' lives (such as spending money wildly, getting into automobile accidents, running away from home), and certainly may be incapable of expressing the sort of gratitude other ill people ordinarily extend to their caregivers. As a result, the central interpretive problem and practical dilemma for caregivers, heightened in the case of mental illness, is how to draw appropriate boundaries between themselves and a sick family member. The confusion, bewilderment, and consternation about "drawing the line" with someone suffering from depression, manic-depression, or schizophrenia is clear in the following comments: The one [thing] that I think is the trickiest and is very emotional and very stressful is walking that line of "What do I do for this person, and what do I not do?" Because you constantly have to reevaluate that one. You know, you can hear yourself tell yourself [that] . . . you just have to do the best you can for this person, but it's sad and you try to accept that. But having to always say, "Now, what should I be doing for this person, and what should I not be doing? You know, they're disrupting my life. How much should I give?" It's a constant struggle. That's the one that's the

THE B U R D E N OF S Y M P A T H Y

toughest, and it just really gets wearing and very difficult. Like, right now my mother's very ill, so it's going to be even more difficult.... And I'll tell you, the few times that I have walked away, I get just an incredible feeling. When you've drawn the line and you're not doing this reevaluating, and you're not having any contact, and you're living a normal life, it's just incredible. It's a wonderful feeling. You know, it's just wonderful. You go out with friends. I mean, you don't think about it. It's just great.... But it's always constantly reevaluation. That's the most difficult thing. ACCOUNTANT, age thirty-five, daughter

I'm responsible because I'm the closest person to her. So, anything that may happen is obviously my responsibility, not only on the basis of laws but also only the moral aspect. I mean, she is my mom. She raised me up all by herself. And if you look at me now, I'm all in good health. And I owe all the thanks to her and nobody else. I can be very sure of that.... There is a special sense of obligation that children have for their parents in Italy. So, on one hand... I really feel the responsibility. I mean, it's not something that I've been given. It's something that I take. On the other hand, my mom really cuts my wings. I mean, when she gets ill, I have to take care of her. I cannot do certain things. For example, I know that if I were to move here [United States], I would have a better job here and it would be a new chapter, a good opportunity for my life. And, I don't really know if I can take her here with me. So, I'm debating. In my heart, I know that my mom is first and before anything. But after all, is it first before my [own] life?... So, sometimes it's very hard. I go through various kinds of moods in a very short range of time. One day, I feel that she raised me and this is the least I can do. On the other hand, I say, "What about me? Who cares about me? What did I do to deserve this?" I think it's very sad.... So, anyway, it's a problem and I don't have an answer for it.

SALESMAN, age thirty, son

Bearing Responsibility

The choice of caregivers can, of course, be as stark as staying or leaving. One woman, caring for a sick daughter, has not been in touch with her mentally ill mother for nearly fifteen years. Yet another interview centered on a young man's painful decision to finally leave his wife. However, the more usual concerns of the interviewees is how constantly to shuttle between distance and closeness in their efforts to provide ongoing support. The remainder of this chapter details the factors caregivers take into account as they try to solve the most vexing caregiving equation—calculating the appropriate levels of involvement necessary to help another in trouble without jeopardizing their own life, liberty, and pursuit of happiness.

Caregiving in Context Human troubles are often characterized by moments of epiphany or revelation when, after long periods experienced as utter chaos and confusion, the nature of the problem suddenly seems clear.10 In the case of illness, one such moment is receiving a diagnosis. Of course, a person's behaviors are sometimes so beyond the norms of civility and acceptability that the label mental illness is quickly attached to them. Flips into psychotic mania, attempts at suicide, or having robust hallucinations rarely go unnoticed or are passed off as being within the bounds of normalcy. Still, large numbers of people who are eventually deemed mentally ill go for months, even years, without an "official" diagnosis. Family members, therefore, sometimes equally go for months or years feeling anger, fear, confusion, and concern about a loved one's oppressive behaviors without being able to name them as illness. The point at which a person's troublesome behavior is transformed into a disease, via the pronouncements of medical experts, is typically a moment of epiphany for caregivers (and sometimes for patients). Such an epiphany is, however, only the beginning of an ongoing interpretive process aimed at establishing comfortable caregiving boundaries.

THE BURDEN OF SYMPATHY

Hoping and Learning It is difficult to overestimate the power of receiving a medical diagnosis. Since a diagnosis of mental illness remains deeply stigmatizing, it is not surprising that "patients" often reject it. Sometimes family members are similarly shocked by the mental illness diagnosis and their first impulse is also to reject it. One woman told me that "when I heard those words [mental illness] from a doctor, it scared the life out of me." When the doctor explained "You have a serious problem on your hands. This boy is absolutely manic-depressive, if not schizophrenic," her response was to think "Oh my, don't say that.... It's just emotion. He needs to talk to a counselor." Another mother confessed that she was "scared by everything that was happening. I didn't know what was going on with my son. My son wouldn't even talk to me. He was out of his mind.... You know, [I was thinking] things like is he going to be in this hospital for the rest of his life?" For most family members, though, a diagnosis clarifies a history of problems and generates hope that a deeply disruptive family member will finally be "cured."

I loved getting the diagnosis. That was the best day of my life. PHYSICAL THERAPIST, age forty-nine, mother

I'll tell you one of the best days of my life was when I got a phone call from the hospital telling me what they decided was wrong with him [husband] and they couldn't understand why I was so excited or happy. DAY CARE A T T E N D A N T , age

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fifty-five,

Wife

Well, before she was diagnosed as being bipolar, I was seriously thinking about getting a divorce because she was just so argumentative. You know, after she was diagnosed it was something. It was not a character or a personality issue.... It was something that...

Bearing Responsibility

she had no obvious control over and could be treated with medication. That put a different light on it. ELECTRONICS DESIGNER, age sixty, husband

After he [brother] was diagnosed, they [doctors] seemed to have hope. They thought he'd come off of meds and now it's to the point he's going to be on meds for the rest of his life. I don't know if they have actually said that but it is obvious.... The doctors and everyone [initially] gave us that optimism. STUDENT, age seventeen, sister

Once it becomes clear that the problem is mental illness—usually after a dramatic crisis—family members often go through a period of actively learning about it. This may involve conversations with medical people and sometimes extensive reading. This learning process is typically accompanied by heroic efforts to save or cure the sick person. Heroic measures are more easily undertaken at the outset of a catastrophic illness because sympathy margins remain wide and caregivers often believe that once an emotionally ill person realizes how much he or she is cared about, they will get better. Heroic measures also display strong commitment, something that individuals are expected to show when someone close is in a crisis. At this point in a family member's illness career the caregiving role is normally embraced fully, enthusiastically, and optimistically. In effect, there is no constructed boundary between the ill person and family member during the early stages of what is now openly a "caring" role. If there has been any change, it is that boundaries between well and sick family members become even more porous than previously.

Several of his sisters had said to me, "Don't feel you have to stick around for him because you feel sorry for him." But it never occurred to me [to leave]. I felt that I ought to help him get through

THE BURDEN OF SYMPATHY

it. I always believed he could get through it, although there were times right in the middle of it when I thought, "My God." CUSTOMER SERVICE REPRESENTATIVE, age thirty-five, wife

I felt that if I worked hard enough and fast enough I could make her [daughter] better. Anything [the doctors] suggested I jumped on with great enthusiasm. NURSE, age fifty, mother

The hardest [thing] probably for me is realizing that I can't be wonder woman. I can't do it all. I came up here with this idea that I was going to go to classes for two years and then write a dissertation in a year and be out of here.... B u t . . . after his first hospitalization up here, obviously that was not going to happen. B u t . . . it still did not hit me. Nothing, none of this really hit home until probably this past year when he was so sick that they finally did ECT on him.... And what hit home to me with that was . . . okay, he is a pretty sick guy. So that made me say, "Am I going to run full force [in all areas of my life] and maybe lose h i m . . . or am I going to slow down myself a little bit and be able to accommodate some of his needs that I can accommodate?" GRADUATE STUDENT, age twenty-eight, wife Such efforts might continue for some time, even years, but with growing doubts about their efficacy. Unfortunately, in virtually every interview, respondents eventually had to come to the reluctant conclusion that initial hopes for a solution to the problem were an illusion. Those who thought the right combination of love and care, medication, and counseling would heal a sick spouse, child, sibling, or parent slowly came to the recognition that the problem was far more complex than they initially imagined. The imagery that an episode of mental illness could be fixed in the way doctors might help a broken bone to mend gave way to a consciousness of mental

Bearing Responsibility

illness as a permanent condition. Unlike receiving a diagnosis, the recognition of mental illness' permanence seeps into caregivers' consciousness over time. Still, there must be a moment somewhere along the line when a caregiver finally acknowledges the idea that the problem is unlikely ever fully to disappear. That moment no doubt also constitutes an epiphany, albeit a negative one, that sets in motion a wholly new view of their relationship with the ill person in their lives. While every respondent grappled with the concept of permanence, Angela, a forty-six-year-old woman whose life is bounded by a daughter, a sister, and mother with mental illness, as well as another child with cerebral palsy, summed up with great precision the changes in consciousness generated by having to admit that a mental illness may never go away. The matter of permanence came up in our conversation as we were talking about feelings of chronic loss and sorrow generated by her children's illnesses. Here, in some detail, is what she said: I guess I didn't feel her loss that much until after she [sister] tried to commit suicide. I mean I didn't feel like it would be permanent. . . . You know, she did have these periods of getting better and so I didn't feel it as permanent.... I always thought that maybe she would get better or she'd go to a different doctor.... I still didn't see it as permanent. It was later. So, are you saying that the loss becomes more profound at the moment of recognition of permanence? Oh definitely, for her [mother] and for my daughter. That [recognition] is just devastating. Well, if it is not permanent it is like having a cold or something. I mean you go through this period and the person is really unhappy.... [For example], you go through labor and you have a child. They'll be an end to it. And at the end, you know, all of your efforts and suffering will have been for something, you feel. But when you finally realize that there is no end, then you

THE B U R D E N OF SYMPATHY

have a whole different mind-set so you have to change.... First of all, a lot of your sympathy and support will dry up because people are going to get sick of doing that [caretaking].... So you'll be out there alone, sort of trekking along, trying to support them because ... whatever happens to that person, no matter how bad they get, whatever happens, you are not going to desert them. That is how I feel with m y . . . mother and my daughter.... I will try to offer some level of support and be there for them. So if it is permanent, then my whole life has changed and I have to offer this kind of support that I don't really want to offer, but I feel like I have to. And I wouldn't feel like a decent person if I didn't. ... You know, my mother may die in a few years. My sister may be alive for all of my life, but she has her husband.... But with all of them, it is to some extent that you feel like that. But with my daughter I felt it most profoundly. When it's not permanent you can withstand almost anything. When it's permanent, its completely different. INSURANCE ADMINISTRATOR, age forty-six, daughter'/sister

Revising Expectations Erik Erikson has written that it is the capacity for hope that most significantly distinguishes human beings from other animals.11 Indeed, as the writings of Bruno Bettelheim12 and Viktor Frankl13 on the holocaust so powerfully illustrate, human beings are remarkably able to sustain hope in even the most horrific circ*mstances imaginable. We should not be surprised, therefore, that even when the recognition of mental illness's permanence settles into their consciousness and seriously erodes the belief that a resolution of the problem is possible, respondents rarely lose hope altogether. At the point in our conversation when we discuss the chronic nature of mental illness and the likelihood that it will be a lifelong problem, caregivers sometimes follow their realistic assessment of things with the nearly apologetic statement, "But I still can't help but to feel hope." In the self-help group at McLean's, a repeating theme of the talk, often invoked after someone has detailed a particularly diffi-

Bearing Responsibility

cult situation, is the observation that the medications for mental illness are getting better all the time and that medical science might even one day solve the problem. Nevertheless, nearly everyone interviewed described how they felt obliged to ratchet down their expectations for the person in their care. I gave up the future . . . . She is really lost to us as the kid that we knew and the relationship that we had. This is gone. We are grieving the final loss. And they [doctors] said to me, "She might come back." And I said, "I can't do that. I have to grieve that she is totally gone and that she's not coming back in any sense that we knew her." Not that we will never see her again, but that she is not coming back in any sense that we knew her Anything that I get from this point forward is a gift and not a disappointment.... Oh, I sob my guts out. But I'm not sorry for me. I mean, once in a while I say, "This sucks. This is awful. Why do I feel so terrible?" But that's like really rare. I lost this kid. I lost the last piece of this kid. I sob for my loss. I don't sob for me. Does that make sense to you? PHYSICAL THERAPIST, age forty-nine, mother

You have to realize that the person is not going to be what you want them to be or not going to have the life you would like for them. ACCOUNTANT, age thirty-five, daughter Caregivers also ratchet down expectations for their own lives. We almost had to put our life on hold. I find we're five years behind all of our friends. We just bought a house. Most of our friends bought a house when they were in their late twenties. A n d . . . last March, about kids, I finally got up the guts, and said "Okay, I want to start talking about kids. It's really on my mind. It's bothering me. All of our friends have kids. All of our friends are now on their second kid by this point. And... it's hitting me." Up until then, it hadn't even hit me. And so we talked about it. And, you know, I

THE BURDEN OF SYMPATHY

said to Tom, "I'm not talking about getting pregnant tomorrow. I just want you to know this is what's going through my mind." The kids thing came up again around Christmas time... and we said we'll talk about it in a little bit. And then, when Tom went through this depression a couple of weeks ago, I thought to myself, "My God, what would happen if I had a child? All this energy for years I've put into Tom, I'm not going to have anymore." So, that's a big case scenario. Everything I do I have to think about how's this going to affect Tom.... So, I mean, we're at the point now where we still put off the decision. God help me when I turn forty [laughing], but we still have a couple more years. CUSTOMER SERVICE REPRESENTATIVE, age thirty-five, wife In order not to leave you with the mistaken impression that all caregivers eventually feel utterly fatalistic about the future, I should say that some also describe feelings of efficacy and progress in their efforts to help. Although admitting that it is still difficult for them to figure out exactly what they might realistically expect for their son's future, Eileen and Bill are optimistic. From the time Ray suffered a severe psychotic episode, the trajectory of his illness has been toward greater health. He has returned to school and recently began a new job. Eileen observed that "he's thinking really clearly and pacing himself and monitoring himself. I think most of our work with him is over really." And Bill added, "I guess one of the things we've learned is ... about taking time. These things do not just flip into the next phase just like that. It just keeps evolving [in a positive direction].... Progress is being made and . . . we've learned stuff and Ray has learned stuff and we have a relationship with the doctor and we have some sense of what to do and what not to do." Even among those who report progress, the dominant theme of the interviews is an increasing recognition that, despite their best efforts at caretaking, the problem will remain. At a point, everyone also realizes that they truly cannot control the course of another's mental illness and must surrender to that reality. Perceiving their inability to control things is exceedingly important because once

bearing Reaponsibility

that becomes a caretaker's prevailing view, it calls forth renewed efforts to recast the boundaries of obligation. The realization that intractable illness thwarts their earlier goal of control is an "identity turning point" in the careers of caregivers.14 Now, they feel more disposed to accept the inevitability of the problem, to define it more thoroughly in disease terms, and, consequently, to feel less responsible for the unfortunate consequences of their family member's illness. I was tired. I was fed up. I was really angry at her.... I was furious at her for two months.... One of the things that I kept saying was, "I think what I'm going through is the last stage of acceptance." ... I mean, part of it was [that] in order to accept her illness I had to let go of my responsibility.... My feeling, where I sit right now is that... I have absolutely no control over her. She can go off her medication. She can totally, excuse me, f*ck up her life and I have no control over that. I can't stop i t . . . . I think that is the acceptance I got to last December. PHYSICAL THERAPIST, age forty-nine, mother

And by that point he had pulled away from everybody. He wouldn't see anybody. So I mean, it was just a train heading [toward a crash]. There was nothing I could do

Every time I thought I was help-

ing, it was making things worse. So, I guess I must have at some point just sat back and said, "I'm doing all I can and if something else happens, I know I've done my best." CUSTOMER SERVICE REPRESENTATIVE, age thirty-five, wife

I would love to be able to state what Diane's life is going to be, but I have no control over it. HOMEMAKER, age seventy-two, mother

A caregiver's dual recognition that (i) mental illness is unlikely ever to be resolved and (2) that they cannot control it, leads to a

THE B U R D E N OF SYMPATHY

fundamental reassessment of their felt obligations. At this juncture in their relationship with an ill family member, caregivers begin to ask themselves with increasing frequency the question "What are my spouse's (or my child's, my sibling's, my parent's) obligations to care for themselves?" Once that question seriously arises in their consciousness, wholly new perceptions and emotions about their role in an ill person's life become possible.

Assessing Responsibility In his comprehensive history of Darwinian thought, Carl Degler points out that biological explanations of human nature dominated America's thinking at the turn of the century, but then fell into disfavor for decades.15 Within the last ten to fifteen years, biological explanations of human behavior have made a big comeback. The prevailing wisdom in American psychiatry seems to be that affective disorders are brain diseases. Advocate groups such as NAMI (National Alliance for the Mentally 111) fully embrace the view that people suffering from depression, manic-depression, and schizophrenia have "broken brains," in effect. Although members of the MDDA support group occasionally express some reservations about the biological basis for mental illness, versions of biological determinism dominate the talk when questions of cause arise.16 Likewise, nearly everyone interviewed for this book, although willing to speculate about the social or situational factors that might kick off an illness episode, ultimately saw their loved one's problem as a product of bad brain chemistry. My purpose here certainly is not to unravel how nature and nurture might combine in the case of mental illness. Whatever might be the cause(s) of mental illness, I understand the appeal of biological explanations, both for caregivers and those afflicted. If the problem is essentially biological, caregivers and their loved ones are largely absolved from responsibility—caregivers from the responsibility of somehow having caused a family member's anguish and ill persons from responsibility for their unacceptable behavior.

Bearing Responsibility

Biological explanations, by understanding mental illness as somehow rooted in neurotransmitters gone awry, significantly insulate caregivers and patients from moral blame. However, despite generally embracing biological explanations, caregivers who routinely deal with a family member's difficult, hurtful, and unreasonable behaviors inevitably navigate a difficult explanatory course between determinism and personal responsibility. It is a caregiving paradox that while speaking the language of biological determinism, caregivers still invoke personal responsibility as a criterion for assessing the extent of their obligations. Once again, the case of mental illness raises distinctive puzzles for caregivers. I have already discussed how perceptions of permanence and an inability to control the ill person's behavior shape feelings of duty and responsibility over time. To these socially rooted caregiving contingencies let me now add another—the relative willingness of patients to comply with medical treatment. Because of the stigma attached to the mental illness label, the debilitating side effects of powerful psychotropic medications, and often the inability of mentally ill people to appreciate how strange their behaviors seem to others, many ill family members simply deny that they are sick and, thus, refuse any form of treatment. In those families where an ill person does not comply with medical treatment, the reservoir of caregiving sympathy quickly evaporates. Among support group members, conversations often center on strategies for getting family members to accept that they have a disease and to comply with medical protocols. Whether or not their ill spouse, child, parent, or sibling undergoes therapeutic treatments, everyone interviewed agreed that they must bear significant responsibility for getting well. Exhibiting such responsibility becomes, at a certain point, the sine qua non of their willingness to continue as caregivers. Rachel, who has been caring for two siblings, captures sentiments expressed repeatedly in the interviews: It is a complicated thing with mental illness because, on the one hand, if you buy the idea that people really do have... a brain

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disorder, [that] there's something wrong with the serotonin levels or something in [their] head, well then you really can't hold people ... responsible for their behavior.... But it's also got to be pretty hard to hear from somebody who is saying, "[There is] nothing I can do. I am just sick and that is it." ... I mean, it is hard to hear that and I guess the difference between my brother and sister is that when he first got sick, he pretty much almost immediately assumed a major part of the responsibility for his illness. I mean, he has worked. He has gone to school. He has read books. He has gone to support groups. He has had regular medical appointments. For the most part he has been compliant with medicine for the better portion of the time he has been sick. He has listened to people [and] gotten advice. I mean, he is not perfect at dealing with it, but that [compliance] really is what has to happen. I would say the same thing about my sister's illness or my mother's alcoholism. The sin isn't in being sick. The real sin is people who simply don't accept [their illness] and [don't] get the help that they need so that they can at least attempt to help themselves.... Until they get to the point of helping themselves, you know, the best psychiatrists in the world and pills are just no magic potion because there is a lot of work that has to be done. And you know, I suppose some people just say, "It's too much work. I am not going to bother to get better. It's too painful." And I think that is where my sister is at. She just sees it as too daunting a job. Better to be sick than [to] crack away at some of the things that have shaped her whole life—her identity of depression. I mean, that is how she identifies herself—with depression and a depressed life; not being able to go anywhere and not having any goals or aspirations. TECHNOLOGY LICENSER, age thirty-three, sister Research exploring the distribution of empathy suggests that, based on principles of distributive justice, we most thoroughly empathize with those whom we consider hardworking.17 In a society bounded by a history of Protestant ethic ideologies and a cultural ethos of individualistic achievement, empathy is especially accorded those who show a willingness to "pull themselves up by their boot-

Bearing Responsibility

straps." Welfare debates in the United States center on identification of the "truly disadvantaged" and the "deserving needy."18 Increasingly, both federal and state governments seem disposed to provide welfare only to those who are viewed as willing to help themselves. Similarly, caregivers nearly always came to feel that they should continue to extend themselves only if their family member seemed to be making a good faith effort to help themselves. Until it got down to the essence of him having to be responsible for his own actions [our marriage was in trouble]

Now I feel that

it's a much more healthy [situation] ... because he really is responding. . . . Joe is willing to work hard at this [staying well]

I keep

saying to him, "You have only one soul to save and that's your own." If you are saving your soul you won't be a burden to anyone else.... I am very fortunate that he is so motivated, that he wants to figure this out. He wants to have a good life. NURSE, age fifty, wife

I feel that even if they have a mental illness, there are responsibilities that go along with the mental illness.... You see your doctor when you're supposed to. You take your medication as you're supposed to. You live as healthy a lifestyle that you can. If it means that there are people in your life that contribute to your mental illness, then you avoid those people. You absolutely have some control over your own mental illness.... With mental illness, yes, it's something that's going on in the body that you don't have any control over. But if it means you avoid alcohol to keep it controlled, then you don't drink. If it means you need to walk a half-hour every day to get the serotonin levels up, then you walk that half-hour every day. Take charge!!! Don't think that it's somebody else's responsibilities. RETIRED SECRETARY, age fifty-eight, mother

The interpretive problem of deciding just how strenuously to draw caregiving boundaries is additionally complicated by the perceived difficulty in determining whether someone's troublesome be-

THE B U R D E N OF SYMPATHY

haviors truly arise from that person's mental illness. As the previous comments indicate, caregivers invariably wonder whether a mentally ill person can, in fact, exercise control over many of their problematic behaviors. Consequently, caregivers routinely face the dilemma of deciding whether to hold the person or the disease responsible for objectionable behaviors. Although those sick with physical illnesses may sometimes be accused of abusing the "sick role," caregivers ordinarily feel able to determine the authenticity of their complaints and the propriety of their inability to fulfill social obligations.19 The matter is more opaque in the case of mental illness. As a result, respondents in this study often described how caregiving boundaries were frayed by the suspicion that the ill person in their life sometimes manipulates them. Well, I think... that with someone who has mental illness . . . there is definitely a component of [it] that they have some control over. I don't think that our understanding of mental illness is such that we believe that the person has no control over this.... If she [mother] had cancer [instead of mental illness] and she was bedridden, you can kind of understand that. Like her body [doesn't work], you know. And everyone else is validating her. Everyone else around her, like the doctors, are validating the fact that she is sick. She really can't get out of bed. You know, that is what she needs. You know? She needs this treatment. [But] when everyone else around you is saying to you, "It's in her head," and you are trying to do [things] for her and she is n o t . . . responding to you, you are thinking to yourself, "She could be trying to do more." RESEARCH ASSISTANT, age twenty-three, daughter

I also got angry because I really view a lot of it as being manipulative and the older I got, the angrier I got at him [father] because I could see that he could control it when he wanted to.... When I was growing up he could control it around who he wanted to. Maybe there were a couple of isolated incidents where he really couldn't,

Bearing Responsibility

but for the majority of it he would switch like that [snaps fingers] when somebody else came around.... There was a tremendous amount of control there that he was not exerting and so I got angry because he would manipulate. He would manipulate in the sense that he would want everybody's pity, but he wouldn't do anything anybody suggested. LAWYER, age thirty-three, daughter

I think the illness breeds a certain form of manipulation. Some of it is that you know the person is manipulating you and some of it is, you know, they really aren't well and this is their survival skill. TECHNOLOGY LICENSER, age thirty-three, sister

Chapter 3 will deal with the incredibly strong, frequently negative, and nearly always ambivalent emotions that interviewees feel toward a mentally disabled family member. The emotions surrounding caregiving become especially complicated when people have feelings that they consider illegitimate. That is, the problems of managing emotions are compounded when people feel a second order of emotions, emotions about their emotions. The interviews are replete with expressions of embarrassment, shame, and guilt for feeling anger, resentment, or even hate toward a person you are supposed to love. A growing body of literature on the sociology of emotions centers on the idea that we do not simply feel emotions; we also create, intensify, suppress, and transform them.20 One relevant question to ask, therefore, is "How do people deal with emotions when culturally given 'feeling rules' are not well-developed?"21 I can say with clarity right now that, in the case of mental illness, feelings about caregiving evolve to the point where individuals are forced to entertain these questions: "What are the circ*mstances under which I would have to leave? What are my limits as a caregiver?" The final data section of this chapter focuses on their answers.

THE B U R D E N OF SYMPATHY

Preserving Oneself There is a methodological bias in the sample of people assembled for this study. Because many of them were recruited from a "Family and Friends" self-help group, they are people who are sufficiently invested in the caregiving role to participate weekly at the meetings. This is, therefore, primarily a study of how people who have elected to stay in a caregiving relationship bear responsibility. My generalizations cannot extend to those who have given up and exited from the lives of mentally ill relatives. However, several respondents certainly have a perspective on family members who either are not doing their fair share of caregiving or have left altogether. One of my interviews was with the eldest daughter in a large family who was faced with virtually the sole responsibility of caring for her schizophrenic mother. Ordinarily, Joanna simply assumed that it was her duty to be The Caregiver, saying at one point, "I was born with the obligation." However, feelings of resentment toward family members who were literally "hiding out" from her mother (by having unlisted telephone numbers and not revealing their home addresses) surfaced on the occasion of a funeral. Here's the scene Joanna described:

Her brothers and sisters, yes, they're hiding out. She does have contact with one sister. This sister has a lot of problems too. It's not a good situation for them to be together. But yes.... I'm really angry at the fact that they did that. Absolutely. I still can't comprehend how somebody could do that. I really haven't given it much thought until I went to my grandmother's funeral back in January. And I realized that everybody was so uncomfortable, and everybody was so concerned with my mother's being there, and the fact that I brought her. I realized that, you know, "She's your sister as much as she's my mother, and she's sick." And they were looking at me like, "Can't you take her somewhere or do something with her?" And I'm thinking, "You know, you're not here [for her] now. You should have been there years ago, too." I try to forget about it, because

Bearing Responsibility

confronting them about it or expressing how I feel about it just doesn't seem to have achieved anything. But I absolutely had some resentment for that toward her siblings and her parents. ACCOUNTANT, age thirty-five, daughter

Interestingly, when people talk about family members who have opted out of any caregiving, they rarely express rancor toward them. While upset by their own caregiving burden, they seem to understand the motives of those who have left. Their understanding, even compassion, for relatives who do not help them with an ill family member is possible in a culture that deifies personal freedom and the obligation of individuals to achieve self-fulfillment. Indeed, as one of my graduate students from Thailand periodically reminds me, the obligation issues that so confound the people interviewed for this study do not exist in her country. She reports that the question "Shall I subordinate my own needs and desires to the task of caring for a sick spouse, child, parent, or sibling?" cannot even arise in the consciousness of a Thai family member. There simply is no competing expectation to the cultural demand that one be a devoted caregiver. Although the sociological analysis of individualism extends to the origins of the discipline, the conversation about its significance in understanding American character and social structure was reinvigorated through the writings of Robert Bellah and his colleagues. Habits of the Heart details how the ethic of individualism in the United States fosters self-absorption and guarantees a collective sense of strangeness, isolation, and loneliness.22 At one point, the authors discuss the deep ambivalence Americans have about freedom and attachment. The dilemma posed by the need both for attachment and freedom is beautifully captured in Bellah's analysis of romantic love in America. On the one side, Americans believe deeply in romantic love as a necessary requirement for selfsatisfaction. At the same time, love and marriage, which are based on the free giving of self to another, pose the problem that in sharing too completely with another one might lose oneself. The

THE B U R D E N OF S Y M P A T H Y

difficulties that Americans have in maintaining intimate relationships stem in part from the uneasy balance between sharing and being separate. The argument is put this way: Love, then, creates a dilemma for Americans. In some ways, love is the quintessential experience of individuality and freedom. At the same time, it offers intimacy, mutuality, and sharing. In the ideal love relationship, these two aspects of love are perfectly joined—love is both absolutely free and completely shared. Such moments of perfect harmony among free individuals are rare, however. The sharing and commitment in a love relationship can seem, for some, to swallow up the individual, making her (more often than him) lose sight of her own interests, opinions, and desires Losing a sense of one's self may also lead to being exploited, or even abandoned, by the person one loves.23 Certainly, as the quotes throughout this chapter suggest, the task of caregiving is often deeply connected with the privilege of loving. That being so, the ambivalence felt by caregivers as they search for the proper balance of attachment and separation arises from precisely the same cultural confusions that compromise our capacity to love. My data affirm Bellah's theoretical observations that the fear of losing oneself is what ultimately motivates people to leave relationships that threaten to engulf them. When asked what might persuade them to exit from their caregiving situation, most of the respondents first declared that they were unlikely ever to back away completely from their caring obligations. When pressed further, though, they commonly articulated three fundamental criteria that might require exiting—the realization that their efforts to care are ineffective, feeling that their own health is seriously jeopardized by caring, and believing that their self or identity is in danger of obliteration because of their relationship with a mentally ill person. I know... my limit is reached [when] all I think about is ... getting her [mother] in the car and driving off a cliff because I can't stand

Bearing Responsibility

to be with her and I feel she can't do this to people any more.... In a way my identity disappeared because I was just sucked into that blackness and weirdness.... For me, this is my parent and I felt like she was destroying me and I hated her for that. But then I thought this is my mother and she loves me . . . I have very little sympathy, which is sort of cruel of me. INSURANCE ADMINISTRATOR, age forty-six, daughter/sister

I reach some limit in terms of support.... I had stood by him through a number of drunk episodes and situations where he was suicidally depressed.... I've seen him f*ck up his relationships over and over again, and I was there for him.... I did not cut this person off easily. But I reach the point with my own mental health [where] I could not take his abusiveness anymore. I just felt like I had to take care of myself and I couldn't [help him] anymore. RESEARCH PROFESSOR, age forty'-sev'en, sister

The breaking point that I am referring to is where I just... am not going anywhere with this and I think that I am not going to be able to help her, and the marriage is probably going down the drain.... I have tried every venue to help my wife and I am not helping her and at the same time I am destroying myself. SHOP MANAGER, age twenty-six, husband

In the last year ... either I reached my saturation point or I realized how detrimental it was to my personal health.... [My therapist] really helped put it in perspective and we sat down for forty minutes and we drew out a little grid and I think that is when he basically pinpointed it. He goes, "You can't do any more than you are doing and at some point you have to just walk away and say 'I can't do

it.' " LAWYER, age thirty-three, daughter

THE BURDEN OF SYMPATHY

The data and analysis presented in this chapter, aside from complementing existing quantitative studies on caregiving, suggest that different illnesses generate distinctive caregiving contingencies. I have maintained that mental illness poses its own unique interpretive dilemmas for caregivers. With greater frequency than for most physical illnesses, mentally ill persons will reject medical diagnoses, will refuse to participate in efforts to become well, will be angry and hostile toward caregivers, and will be unable to express gratitude for the care they receive. Because these dimensions of mental illness may not be wholly apparent at the outset of caregiving efforts, perspectives on caring shift over time. Initial definitions of appropriate responsibility boundaries prove inadequate as a caregiver's consciousness about a family member's mental illness evolves. Although I am hesitant to describe caregivers' perspectival shifts in terms of predictable stages, I have identified four interpretive "junctures" in an individual's efforts to care for a mentally ill family member. Early in a patient's illness career, caregiving boundaries are expansively drawn and extensive efforts are often made to "cure" an afflicted person's illness. At some point, caregivers realize that while there may be periods of remission, mental illness is likely to be a lifelong condition. This causes caregivers to revise life expectations both for themselves and the ill person in their care. An understanding that the problem may be permanent, along with an eventual awareness of their inability to control the ill person's behaviors, moves caregivers to yet again reassess their responsibilities. In particular, they gauge their own obligation by the ill person's willingness to comply with medical treatment. Such thinking about joint responsibility often requires delicately balancing biological views of mental illness's cause with ideologies of personal responsibility. Finally, caregivers may, at some point, discontinue care. Such a decision is related to the unhappy realization that nothing they try is effective in ameliorating the problem and that continued caring will fundamentally undermine their own health and the integrity of their identity. Throughout I have avoided such descriptors as "the caregiving

Bearing Responsibility

role" or "the caregiving burden."24 Certainly, the words of respondents imply the existence of broadly held cultural scripts about the obligation to care. However, the notion of a singular caregiving role implies a consistency and uniformity of experience that does not adequately address the contextual factors that shape caregiving. The notion of a caregiving role does not sufficiently attend to how a caregiver's phenomenology shifts as clarity about the character of mental illness emerges over time. Put in slightly different terms, the interview materials highlight the dialectical, processual, and emergent relationship between sufferers of any illness and those who care for them. The data illustrate that the moral boundaries of caregiving are constantly "under construction," dependent as they are on the meanings generated through the ongoing interactions of caregivers and patients. Arthur Frank writes, "Caregivers are the other halves of illness experiences. The care they give begins by doing things for ill persons, but turns into sharing the life they lead."25 And later, "Eventually a balance must be worked out between what the ill person needs and what the caregivers are able to provide."26 This chapter has been directed at learning how the lives of caregivers and mentally ill family members become intertwined and how caregivers try to sustain workable levels of responsibility. A more thorough account of how obligation boundaries are created must consider the "social locations" of caregivers—their status within the family. Chapters 4 will examine how this social dimension affects the willingness of individuals to care. A more immediate task, though, is suggested by comments of those who have spoken in this chapter. Caregiving arouses profound and complicated emotions. We ought to expect that as feelings of obligation shift over the natural history of an illness career, so also will the dominant emotions felt by family caregivers. Chapter 3 fills out the general picture I have begun to create by detailing how caregivers manage the powerful emotions that accompany meeting moral obligations.

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THREE

Managing Emotions You hate her illness, but you don't hate her. And I hate what she has done to us and the hell that she has put us through.... I don't think that I hate her.... I think that it's more hating the illness.... I try to tell myself that it's not her.... It's not "I hate you." It's "I hate what you have done. I hate what you are doing." ACCOUNTANT, age thirty-five, daughter

Although sociologists have always understood feelings of obligation, responsibility, and duty to be the moral cornerstones of society, little attention has been given to the ways such feelings are evoked, interpreted, managed, and acted on in everyday life. Candace Clark has observed that while "Sociologists often use the language of reciprocity and exchange to explain the give-and-take of everyday interaction . . . [they] rarely ask why people feel they owe something to others, what the 'ligament' is that connects people, or what the feeling of owing or obligation consists of."1 This chapter examines the intense emotions that surround efforts to honor a commitment to care for a family member with a major mental illness. My goal is to explain the kinds of emotions that arise as family members engage in ongoing interpretations of what they owe a spouse, child, parent, brother, or sister in desperate emotional trouble. It is not surprising that severe illness makes particularly exhausting emotional demands on healthy family members. In one survey, 48.1 percent of the sample named the serious illness, suicide, or death of a loved one as generating emotions other than what 71

THE B U R D E N OF S Y M P A T H Y

respondents thought they "ought" to feel.2 As difficult as it is to manage emotions in caring for a physically ill person, efforts to negotiate appropriate emotions are still more arduous in dealing with a mentally ill person. Since shared moods and feelings are necessary for the maintenance of social life, mentally ill people especially disrupt family life because they suffer from an "affective" disorder. The diagnoses of depression or manic-depression are partly defined by a person's inability to feel "correct" emotions.3 While their sickness might dramatically disrupt the logistical routines of everyday family life, physically ill people are ordinarily deeply invested in getting well and returning to their presickness social roles. In contrast, mentally ill persons, virtually by definition, cannot abide by the usual rules of social settings and behave in socially unacceptable ways. Sometimes they deny that they are ill, and frequently treat their caregivers with hostility instead of gratitude. Further, if ordinary social interaction requires the ability of persons to see the world from each other's perspectives, efforts at meaningful communication with the mentally ill are typically shortcircuited. After all, they have been identified as mentally ill because they have feelings and thoughts that are incomprehensible to "healthy" persons. In this way, mentally ill people threaten both the concrete routines of daily life and, more significantly, the implicit symbolic order on which such routines are premised. Their behaviors are especially disturbing because they upset the most sacred of all social things—the coherence of everyday life. With its emphasis on how caregivers negotiate their feelings, this chapter contributes to the emerging study of the "sociology of emotions."4 Caring for emotionally ill people highlights the "links between cultural ideas, structural arrangements and ... the way we wish we felt, the way we try to feel, the way we feel, the way we show what we feel, and the way we pay attention to, label, and make sense of what we feel."5 The problematic character of the emotions generated by mental illness makes it a strategically useful case for advancing our understanding of what Arlie Russell Hochschild has called "emotion work."6 Because breaches of social

Managing Emotions

order generate exceptionally strong negative emotions, the case of mental illness allows us to examine how caregivers reconcile love for a family member with such emotions as fear, bewilderment, frustration, resentment, anger, and even hate.7 As in the last chapter, I begin here with the assumption that the caregiving experience must be looked at as a process. In their earlier and groundbreaking research, Barney Glaser and Anselm Strauss demonstrated that illnesses follow clear and predictable social trajectories.8 In my own work9 on depression, I argue that people afflicted with mental illness follow a discernible "career" path characterized by critical "turning points in identity."10 To the extent that there are predictable moments in the unfolding of a family member's illness, there is a parallel caregiving career. In Chapter 2, I showed that caregivers' views of their obligations change over time. In this chapter, I will detail the corresponding shifts in the emotions they feel about giving care. By considering the evolution of caregivers' emotions, I am moving beyond studies that link emotions only to particular incidences, momentary encounters, or discrete events. Hochschild has noted that her own well-received work, The Managed Heart, analyzed feeling rules and emotion management only during troubling moments.11 This recognition has led her to call for studies that "ask by what principle . . . we manage our feelings over the course of a long string of moments; how... we fit emotion management to a line of action through time."12 In a similar vein, Steven Gordon says that "we need studies of how people . . . negotiate and bargain over a norm's exact context and situational applicability."13 This chapter derives its conceptual energy by examining the relationship between obligations and emergent emotions. Consideration of how emotions systematically change over the joint caregiver/patient career illuminates how the emotions we feel at any moment in time may be rooted in a prior history of affect. Although students of emotion have rarely looked at the interactional history of emotions, they have nevertheless provided a useful conceptual tool for doing so. Hochschild has proposed the idea

THE B U R D E N OF SYMPATHY

of "framing rules"14 as an aid for comprehending the linkage between ideologies and emotions. As an example, a woman who has embraced certain principles of feminism may feel differently about leaving her children in a day-care center than a woman who feels no affinity with feminist ideologies. The behavior of the two women is identical—leaving a child in the care of others—but their respective and different framing rules will yield different emotions. Although our later discussion does relate caregivers' emotions to the essentially ideological frame of mental illness as a brain disease, my use of the framing concept is politically neutral. I will show how each phase or turning point in the caregiver/patient career is characterized by a distinctive cognitive frame that shapes respondents' emotions. In order not to simplify things too much, I should say that those interviewed felt a range and simultaneity of emotions throughout the course of their relationship with the ill person in their lives. In fact, part of the difficulty posed by mental illness is the sheer volume and volatility of the emotions experienced. Everyone with whom I spoke felt fear, confusion, hope, compassion, sympathy, love, frustration, sadness, grief, anger, resentment, and guilt. Equally clear, however, are the consistent changes in the relative significance and intensity of each of these emotions over time. You might think of the several emotions felt by respondents as constituting a shifting hierarchy of emotional salience. Thus, my analysis is directed toward documenting and accounting for the dominant emotions at each critical juncture of the common path shared by the caregivers in this study. Paralleling Chapter 2, I look at the ebb and flow of emotions at four critical junctures in the caregiver/patient career. Prior to a firm medical diagnosis, respondents experience what I call emotional anomie.15 They are grossly confused by the behaviors of a family member and quite simply don't know precisely what to feel. Anomie refers to the sheer bewilderment of a life that has quickly shifted from coherence and predictability to chaos and disorder. Eventually, a diagnosis of depression, manic-depression, or schizophrenia

Managing Emotions

provides a medical frame that clarifies the circ*mstance of caregivers and provokes feelings of hope, compassion, and sympathy. At a certain point, initial optimism that their loved one's mental illness can be fixed gives way to a sense of its likely permanence. The frame of permanence, coupled with doubts about the ill person's inability to control objectionable behaviors, ushers in more negative feelings of anger, resentment, even hate. Some of the respondents eventually conclude that none of their efforts can successfully change things. Such a recognition leads them to an acceptance of the other's condition. Acceptance has the potential to liberate caregivers from the earlier burdensome belief that it is their duty to somehow solve the problem.

Experiencing Emotional Anomie As sociologists have long observed, the decision that someone is suffering from mental illness is certainly as much a cultural and political decision as it is a purely medical one.16 Parents of adolescents or young adults often found it particularly confusing to make sense of their children's extremely troubling behaviors since they were moving through a life stage normally associated with difficult and contrary behaviors. Several parents described long periods during which they were uncertain what to make of their children's behaviors or how to respond to them. Here are the reactions of some typical parents during this early stage in their child's illness:

Well the lines are blurred.... But you know what mental illness is. . . . At least if you're psychotic, you know that. That is different from just rebelling and for four years Brad was sort of doing [that].... But my horror was just the experience of knowing that your son is decompensating (sic).... You don't know whether he is on drugs or what is going on with this kid. You don't know what to do if he is. If he's on drugs, do you call the police? Do you call the doctor? Maybe he's not on drugs. Maybe this kid is just, you know, acting

7 49-69. 83-86, 105, 143, 146, 148, 168-69, i/4> 185, 226-27, 235, 249-51, 253, 26sn, 268n, 272n. See also Caregivers in context, 49-69 contingencies of, 46, 68, 86, 105 distancing oneself from the,

13, 44 division of labor, 12, 45, 146, 249-51 evolution of, 26-27, 68

305

and field worker role, 174 as a form of service work, 143 and gender, 12, 43~45> 83-84, 148, 168-69, 249-51, 253, 268n, 272n initial, 40, 51-52, 85 interpretive problems of, 47, 105, 185, 235 limits of, 63, 67 socialization to, 83 stresses of, 226-27 as women's work, 84, 148, 169, 249-51, 253, 268n, 272n Caring, 230-31, 241, 243, 24446, 249, 251-52, 254, 260-63. See also Caregivers; Caregiving role cultural ambivalence about, 230, 249, 254, 262 ethic of, 245 for the family, 260-63 and freedom, 231 as a rational choice, 241 and social policy, 251-52, 263 Case study, 28, 112 Cause of mental illness, 17-18, 23, 28-29, 58-60, 68, 98, 12223, 148-49, 151, 154, 156-70 biological, 58-60, 68, 98, 123, 151, 154, 156-60, 163, 170 environmental, 160-61, 164, 170 family structure as a, 160 genetic predisposition as a, i58-59> 161

306

Cause of mental illness (continued) life disappointment as a, 164 mothering as a, 165 parenting as a, 164-65 person's past as a, 160 proximate, 161 street drugs as a, 161 stress as a, 164 temperament as a, 170 Center on Human Policy Research, at Syracuse, 32 Charity, 242 Childhood, 79, 95, 113-14, 115, 120, 162. See also Children loss of, 120 memories of, 114, 162 role inversion in, 95, 116, 147 Children, 13, 25, 28, 79, 93, 95, 112-125, 146-48. See also Childhood feeling alone, 115 hopes for, 13, 93 need for self protection, 118 peculiar plight of, 113 validating pain of, 116 Christ, Jesus, 245 Chronic fatigue syndrome, 16 Chronic sorrow, 53, 104 Clark, Candace, 71, 242-43 Clozaril, 209 Co-dependence, 38,154-55,184-

85 Codependent No More (Beattie), 154

Index Cooley, Charles Horton, 166 Commitment, 15, 31, 33, 39, 51, 105, 138, 145, 238, 242-44, 246, 248. See also Obligation; Responsibility Common Sense Book of Baby and Child Care, 77ie(Spock),i64 Communitarian movement, 238 Communitarian philosophy,

239, 245 Communitarians, 237-38 Community, 238, 241-42, 246, 249 Compartmentalization, 12, 44. See also Gender roles Control, 23, 28-29, 47> 5^ 5657, 61-63, 68, 75-76, 82, 100101,104,106,129,148-49.15456, 170-89, 27on, 282n ability of ill person to exercise, 51, 61-63, 68, 75, 154, 181-83 absence of, 47, 56-57, 100-101,

187, 189 by adopting an advocacy role, 182-84 loss of, 180 need for, 183 over the environment, 182 over the person's illness, 23, 47> 56-57> 76, 100, 104, 106, 129 over psychosis, 181 reestablishing, 180 relinquishing, 155, 182

Index and social order, 180-81, 189, 27011, 2820 Corporation Nation (Derber), 262 Counseling, 5, 10, 183, 217. See also Therapy Court system, 10-11, 29, 80, 196 Crisis, 9-10, 29,137-38,193.196205, 222

dealing with, 9, 198-205 routinized, 199, 200-201 seeking help during, 199 teams 10, 196-97, 200, 202,

307

fantasies of, 176-77 holding on to hope for a, 5054, 132, 172-73, 176 initial expectations for a, 26, 51-52, 68, 87-88, 93, 172-73,

175 through medical science, 172 professionals' frankness about

a, 175 through psychotropic medications, 172 rational assessment of a, 172 unreality of a, 176

222

Cult of domesticity, 249, 251 Cultural anthropology, 157, 174 Cultural hegemony, 169 Culture, 228, 235-36, 239 Appalachian, 236 constraints of, 235-36 contradictions within, 236 defined, 235 of narcissism, 239 paradoxes of, 228, 236 in simple societies, 235 taken-for-granted, 236 tensions within, 236 Cure, 17-18, 26, 28, 50-54, 68, 87-88, 93,132,148-49, 155, 165, 170-79, 209 abandoning hope for a, 155, 174, 176, 179 cycles of hope and disappointment about a, 171-

72, 175

Dahmer, Jeffrey, 255 Dangerousness, 4, 7-8, 79, 105, 202-3, 258, 284n. See also Hospitalization; Involuntary commitment to others, 4, 7-8, 79, 105, 202, 258 predicting, 284n to self, 79, 202-3, 258 Darwin, Charles, 156 Degler, Carl, 58 Deinstitutionalization, 207-8,

257 Depression, 8, 14, 17-19, 27, 74, 84, 89, 144, 152, 154, 248 Derber, Charles, 31, 262 Diagnosis, 6, 23, 27, 49-51, 68, 72, 74, 76, 82-91, 100, 105-6, 136, 165, 209-11 comforted by, 85 denial of, 68, 83, 105

Diagnosis (continued) doubt about, 82 and initial optimism, 51 liberated by, 50, 85 receiving a, 6, 49, 85 Disability status, 194, 224-26 appealing, 194 and identity, 226 paperwork for, 225 reluctance to admit, 225-26 Disclosure, 118-19 Doctors, 29-30, 36, 77, 81, 86, no, i74-75> 190, 196-97. 205, 213-222. See also Psychiatrists anger at, 221 excluding caregivers, 174 witholding information, 174, 215 Doctor/patient interaction, 215 Do I Have to Give Up Me to Be Loved By You? (Paul and Paul), 244 Drawing the line, 25-26, 37-38, 40-49, 61, 68, 99-100, 109, 130, 187, 233 Drug use, 6 Duff, Kat, 16 Durkheim, Emile, 198, 237 Duty, 16, 40, 59, 245 Eco, Umberto, 16 Electro-convulsive therapy (ECT), 52, 144-45, 212 Emotional alienation, 143 Emotional anomie, 27, 74-85,

Index

92, 100, 106, 198-99, 205, 275n, 284n Emotional labor, 79 Emotions ambivalence, 38, 63, 65-66, 249, 254, 262 anger, 16, 27, 57, 62-63, 68, 7375, 81, 87, 91, 95, 97, 99, 103, 106, 115-16, 118, 122, 133,

135-

36, 143-44, 162, 194, 221

anxiety, 21, 23, 83, 92 bewilderment, 73, 92 change over time in, 73, 1067, H3 compassion, 27, 65, 74-75, 85,

88-89, 9i, 97, 122, 242-43, 251 confusion, 22-23, 27, 49-50, 74, 77-78, 83, 92, 107, 130, 174, 194, 223 x cultural variations in, 84 disappointment, 22 economy of, 90 embarrassment, 63 empathy, 14-15, 31, 33, 60, 8789, 91, 122 exhaustion, 22 fear, 27, 73-74, 77, 83, 92 feeling proper, 72, 84, 89 and feeling rules, 63, 84 and framing rules, 74 frustration, 22, 27, 63, 73-74, 86-87, 92-93, 95-97, 106, 118, 194, 197, 221, 226 grief, 27, 55, 74, 93-95, 116, 178, 186

Index guilt, 22, 27, 37, 63, 74, 76, 103, 106, 116-17, 125, 130, 13334, 144, 165, 169 hate, 22, 63, 67, 73, 75, 82, 91,

309

ignoring caregivers, 78 social control by, 213, 28on Expressed emotion, 168

Families Against the City (Sennett), 249 Family, 19, 28, 79, 108-9, 111-12, hope, 6-7, 13, 27, 39, 5O~55> 120, 126-27, 138, 146-48, 169, 74, 89, 92-93, 172, 176-78 180, 213, 238, 246-53, 258, 260and ideology, 74 63, 268n, 272n intensity of, 74 alliances within, 120 love, 16, 18, 25, 27, 65-66, 74, 1( 2 10 care for the, 260-63 78, 85, 88-89, 9L > > 5> and cultural values, 248 109, 117, 129-30, 139, 143> 145> different forms of, 260 187, 218-19, 243~44> 246, 263 dysfunctional, 261 making sense of, 115 effects of depression on, 19 overtaken by, 118 evolution of, 249 powerlessness, 22 as a haven, 250 rage, 120, 136 and industrialization, 249-50 and reason, 48 private realm of, 246 resentment, 27, 64-65, 73~75> privatizing of, 246, 248, 251, 91, 97, 106, 122 261-62 second order of, 63 secrecy, 126-27 shame, 63, 116, 118, 121 as a social construction, 169 simultaneity of, 74 status within, 28,108,112,146sociology of, 63, 72, 274n volume and volatility of, 74 48 as a system, 261-62 Emotion work, 72 as the ultimate repository of Enabling, 155, 179, 184-85, 187, care, 252-53, 258 189. See also Co-dependence values, 138, 260 Erikson, Kai, 24 weakening of, 238 Etzioni, Amitai, 238-40 women's role in, 148, 169, 246, Experts, 30, 49, 78,154, 205, 213250-51, 253, 268n, 272n 14, 223, 28on. See also Family and friends support doctors; psychiatrists; group, 22-24, 37, 64, 91-92, psychiatry; therapists 98-1OO,122

hierarchy of, 74

3io

Family and friends support group (continued) 100, 146, 149, 153, 166, 170, 178, 234-35. See also Support group author's role in, 22, 24 conversation in, 22 socialization of newcomers in, 92 Fate of idealism, 210 Finch, Janet, 252 Foucault, Michel, 255 Four Cs, 23, 28, 153-55 Four Cs mantra, 23, 100, 153, 155 Frank, Arthur, 3, 18, 69 Frankl, Viktor, 54 Freidson, Eliot, 213-14 Freud, Sigmund, 214, 234

Gemeinschaft, 237-38 Gender roles, 12-13, 43~45> 8384, 148, 169, 246, 249-51, 253, 268n, 272n, 289n. See also Caregiving; Family and inequality, 169 men's coping styles, 44-45 socialization to, 83-84 Gesellschaft, 237-38 Glaser, Barney, 73 Globalization, 263 Goals of the book, 26 Gofrman, Erving, 256 Going native, 176 Good Samaratin parable, 245

Index

Gordon, Steven, 73 Gordon, Suzanne, 241, 251 Gramsci, Antonio, 169 Gratitude, 20, 47, 72, 90-91, 95, 105 Guess Who's Coming to Dinner? (film), 110 Habits of the Heart (Bellah), 65 Haldol, 151, 173 Halfway house, 131, 190, 257 Health system, 197, 230. See also Mental health system double standard of, 202, 22930 Hepburn, Katharine, no Hewlett, Sylvia, 261 Hidden Victims, The (Johnson), 178 Hobbes, Thomas, 234 Hochschild, Arlie Russell, 7273> 143 Hospitalization, 9, 11, 29-30, 36, 42, 50, 52, 77-79, 93, 95, 117, 120, 125, 138, 182, 186, 191, 195, 197, 202-13, 225, 259. See also Mental hospitals cost of, 225 criteria for, 202-3. denied, 202-3 initial, 9, 36, 52, 77-78 length of stay, 211 provides relief, 204 Hughes, Everett, 210 Hypomania, 86, 276n

Index

Identity, 57, 73, 93, 245 collective search for, 245 turning points in, 57, 73, 93 If I'm so Wonderful Why Am I Still Single (Page), 244 I Know This Much Is True (Lamb), 231 Ik, the, 31 Illness ideology, 28, 153, 254 Illness narratives, 18-21, 32-33, 156, 179-80, 269n chaos versions, 20-21

Intimacy, 66, 84 Involuntary commitment, 10-

importance of, 32 and social connection, 19, 269n social nature of, 18 Illness trajectory, 73 Individualism, 31, 60, 65-66, 238-42, 245-46, 260 Insomnia, 14, 21 Insurance, 30, 144, 194-96, 210, 212, 222-25, 227-29. See also Money; Paying for treatment Americans without, 229 anxiety about costs of, 227-28 attempts to secure, 30, 194, 222-23 failure to qualify for, 195 government, 196 horror stories, 144, 212

Jacoby, Russell, 243 Johnson, Julie, 178 Judaism, 138

not having, 194 paperwork for, 224 private, 195-96, 227 Insurance companies, 29, 195, 212, 222

11, 13, 22, 79-82, 202-4, 259-

See also Dangerousness; Hospitalization Involvement, 15-16, 25, 37-38, 46, 49, 100, 27in boundaries of, 15, 38 degree of, 37 proper level of, 16, 25, 46, 49, 100, 27in

Kafka, Franz, 191 Kelly, Susan, 244 Kin work, 84 King, Martin Luther, 245 King, Steven, 3 Koppel, Ted, 246 Kozinski, Ted, 255 Kurosawa, Akiro, 146 Laing, Ronald, 256 Lamb, Wally, 231 Lasch, Christopher, 213-14, 239 Law of the hammer, 159 Lefley, Harriet, 258 Life chances, 29, 27on Listening role, 18, 20 Lithium, 206 Locke, John, 234 Looking glass self, 166

Index

312

Loss, 27, 31, 42-43, 46, 66-68, 93-95, 100-102, 104, 113 122, 177-78 of health, 27, 31, 46, 66-68, 102, 113 of identity, 27, 42-43, 46, 6668, 100-2 of a person, 93-94, 104, 122, 177-78 of self, 100, 102 Love Tactics (McNight and Phillips), 244 Luckmann, Thomas, 253 Managed Heart, The (Hochschild), 73, 143 Mania, 47, 49, 117. U9> 135-36, 181, 194 Manic-depression, 14, 27-28, 74, 84, 89, 135, 152, 154, 194 Manic-Depressive and Depressive Association (MDDA), 22, 35, 58, 100, 105, 113-14, 184, 222-23, 279n Marriage, 134 Marx, Karl, 143, 237 McLean's Hospital, 153 McNight, Thomas, 244 Medical model, 20, 84, 122-23, 154, 210 criticism of, 123, 210 Medicalization, 256 Medications. See Psychotropic drugs Men's movement, 84

Mental health industry, 123, 221 Mental health system, 22, 25, 29, 144, 156, 190-91, 194> 19698, 201, 205, 210, 222-24, 229. See also Hospitalization; Mental hospitals baffled by, 194 broken, 229 cynicism about, 210 defined, 196 incomprehensibility of, 144, 223-24 marginalizing caregivers, 205 multiple cultures within, 19798 Mental hospitals, 42, 77, 120, 190, 207-8, 215, 222, 229, 257. See also Hospitalization conditions within, 207-8, 229,

257 culture of, 208 state, 207 Mental illness. See also Mentally ill, the ability to control, 47, 56-57, 76, 100-101, 104, 106, 129 affecting spousal relationships, 12-13 biological explanations of, 5860, 68, 84, 98, 123, 151, 156160, 163, 170 certainty of, 9 chronic nature of, 54, 96, 106,

175

Index and the coherence of everyday life, 16, 72, 105, 140-41, 181 as a contagious disease, 13-14, 16, 19, 226 contrasted with physical illness, 23, 46, 52-53, 62, 116,

156, 173 coping with, 23, 29 cultural roots of, 75 definition of, 72, 256 denying, 10, 16, 23, 50, 59-60, 72, 83, 170, 225 epiphanies about, 49, 53 episode of, 47, 140 family genealogy of, 13, 15859 first episode of, 49, 77, 79, 93> i35-37> 175> 198 first signs of, 4-5 history of, 254-55 and human rights, 202, 258 inheritability of, 14, 128, 142, 163-64 initial stages of, 4, 75 interpretive complexity of, 23, 68, 235 learning about, 39, 50-54 life absorbed by, 9, 234 misconceptions of, 128 normalization of, 126-27 paradoxes of, 122 personal memoirs of, 24 as a political category, 75 recognizing complexity of, 52 recognizing permanence of,

26-27, 53-54, 56-57, 59, 68, 75, 91-100, 172, 175 relapse, 171-72 reveals cultural tensions, 236 social construction of, 156 and social order, 72, 105, 140, 180-81, 189 stigma of, 50, 59, 105, 119 symptoms of, 7-8, 136 traumatized by, 9, 97, 180 unique complexity of, 107 unpredictability of, 46-47, 181 Mentally ill, the, 14, 16, 27-29, 36-37, 40, 44, 48-49> 51, 5968, 75-77, 97-98, 101-2, 1046, 124-25, 138-39, 141, 154, 181, 183-85, 199, 229, 233, 255, 257-60. See also Mental illness admiration for, 104 anti-social behavior of, 16 community supports for, 25760 and compliance with treatment, 29, 59-61, 97-98,

105, 199 dialectic of closeness and distance with, 49, 184, 233 distancing oneself from, 14,3637, 40, 185 doubting, 76-77 historical treatment of, 255 leaving the relationship with, 28, 48, 63-67, 101-2, 106, 124, 138-39

Index

314

Mentally ill, the (continued) manipulation by, 62-63, 125> 141, 181, 183 need for independence of, 36, 44, 185 self-control of, 27, 51, 61-63, 68, 75, 154 stigmatization of, 229, 255 unpredictability of, 255 Methodology of the study, 3, 2526, 33, 64, 100, 112, 114, 171, 178, 180, 193, 267n, 278n choosing respondents, 100, 114, 267n generalizing findings, 112, 278n interviewing respondents, 26, 112, 171, 180, 193 sampling, 64, 114, 171, 178, 267n Mills, C. W., 30 Misery and Company (Clark), 242 Missing persons, 177 Money, 7-8, 131, 186-87, 194, 198, 207, 210, 212, 218, 225, 228. See also Paying for treatment misuse of, 7-8, 187 Moore, Thomas, 155 Moral boundaries, 15, 30, 69 Moral person, 102-3, 231 Mothering, 12-14, 43, 116, 12122, 164. See also Family; Gender roles; Mothers Mothers, 11-13, 4i> 76, 78, 83,

89> 94> H3> U7> 124> 126, 148, 186, 206, 246-47. See also Family; Gender roles; Mothering bonds with children, 12-13, 4i> 89 role of, 186 unable to gain distance, 12

National Alliance of the Mentally 111 (NAMI), 58, 96 Nature/nurture debate, 58, 157, 160-61, 169, 289n Neugeboren, Jay, 32 Nightline (television program), 246 Nurture Assumption, The (Harris), 164 Obligations, 4, 15-16, 20, 23, 25, 30-31, 38, 41, 48, 57-58, 62, 64-66, 71, 73> 85, 105, 107, 109, 111, 113, 122, 131, 147-48, 152, 229, 233-36, 240, 251, 25354, 262. See also Commitment; Responsibility born with, 64 boundaries of, 4, 57, 62, 107, 152 change over time in, 58, 73, 113 contextual nature of, 234 contingencies of, 23, 30, 234 cultural rhetoric concerning, 234

Index cultural variations in, 65, 111 and culture, 234 essential nature of, 15 genealogical rules of, 147-48 general theories of, 15, 234 hierarchy of, 147-48 limits of, 15, 66 loosening of, 31

315

children's expectations of, 121,

Page, Susan, 244 Papolos, Demetri, 178

147 obligations to children, 42, 88, 109, 111 what children owe, 110-11, 124, 126, 130-32 Parsons, Talcott, 234 Paying for treatment, 30, 198. See also Money Paul, Jordan, 244 Paul, Margaret, 244 Person/illness distinction, 50, 62, 98-99, 122, 181-82 Phillips, Robert, 244 Poitier, Sidney, 110-11 Police, 5, 10-11, 22, 29, 80, 97, 167-68, 200, 222 Postindustrial society, 240 Postmodern, 30-31, 240-43. See also Postmodernity America, 30-31 paradox, 241-42 self, 240, 243 society, 240 Postmodernity, 30, 237-47, 287n. See also Postmodern and communality, 241-47 and individuality, 237-41 tension of, 242

Papolos, Janice, 178 Paradox of culture, 228 Paranoia, 4, 86, 114-15, 127 Parents, 25, 28, 42, 88, 93, 10911, 113, 121, 124, 126, 129-32, 147-48

Protestant ethic, 60 Prozac, 123, 136, 171, 279n Prozac Diary (Slater), 171 Psychiatrists, 20, 30, 36, 60, 81, 122, 163, 197, 214-21. See also Doctors; Experts

moral, 16, 20, 109, 234, 251,

254 nature of, 38 origin of, 234 sense of, 48, 253 situational nature of, 111 in other countries, 48 to others, 233, 235-36, 240 to pursue personal happiness, 233 to self, 48, 148, 233, 235-36 to society, 235 Obsessive-compulsive behavior, 171 O'Connor, Richard, 178 Outpatient commitment, 259 Overcoming Depression (Papolos and Papolos), 178

Index

316

Psychiatrists (continued) anger toward, 216, 219 behaving callously, 217 blaming caregivers, 216, 218 control exercised by, 81 cynicism about, 220-21 decontextualizing treatment, 216-17 finding the right, 218 good, 218-19 inaccessibility of, 214-16 making snap judgments, 21617 as saviors, 216 unwilling to listen, 216 Psychiatry, 20, 123, 154, 174, 219. See also Doctors; Experts advances in, 219 prevailing ideology of, 219 scientific status of, 219 transformation of, 219 Psychopharmacology, 157 Psychosis, 9, 47, 49, 75, 125,13637, 152, 161, 175, 183, 187, 193, 256 Psychotropic drugs, 20, 22, 55, 59, 98, 103, 117, 122-23, 126,

133, 144, 151, 154, 157, 171-75, 178, 195, 199, 205, 207, 215, 220-21, 227, 257

side effects of, 117, 126, 133, 178, 215 stop working, 171

Rashom*on (film), 146 Rationalization, principle of, 190 Rawls, John, 234 Religion, 134, 138, 244-46 Responsibility, 15-16, 23, 26-27, 30, 40, 42, 48, 54, 57-63, 6869, 103-6, 154, 233, 239, 256. See also Commitment; Obligation absolved from, 58, 154 assessing, 40, 58-63, 68 of the ill person, 26-27, 5861, 103-4, 106, 256 personal, 239 and rights, 239 Revising expectations, 39, 5458, 68, 93-95, 104, 141-43 for an ill person, 39, 55, 68, 9394, 104 for self, 39, 55~56, 68, 95, 141, 143 Rieff, Philip, 154, 213-14 Role-taking, 86, 87, 276n, 277n and power, 87 and race, 277n Roles, right, 116, 147 Rousseau, Jean Jacques, 234

Salk, Jonas, 159 Scheff, Thomas, 256 Schizo-affective disorder, 6, 173 Schizophrenia, 14, 27, 74, 84, 89, 125-26, 128, 152, 154, 157, 201

Index Schwartz, Morrie, 246 Science, 153 Search for answers, 3

317 Sociological theorists, classical,

Secrecy, 126-27, 12.9- See also Family Self-help, 21, 24, 64, 244-45, 249. See also Family and

237 Sociology, origin of, 237 Speaking of Sadness (Karp), 16, 18-20, 171, 248 Spirituality, 153, 245-46 Spock, Dr. Benjamin, 164

friends support group;

Spouses, 25, 28, 91, 111, 113, 134-

Support groups books, 244-45 groups, 21, 24, 64 Sennett, Richard, 249 Siblings, 12, 25, 28, 111, 113, 12021, 125-134, 148, 231-32 level of caregiving involvement, 12, 113, 231-32 vantage point of, 129 Sick role, the, 62, 90 Simmel, Georg, 15, 262 Slater, Lauren, 19, 218 Sleep, 8 Sleep disorders, 21 Smith, Adam, 234 Social bonds, 30 Social contract, 180 Social Security Disability Insurance (SSDI), 222 Social Security Insurance (SSI), 222, 225

Social workers, 29, 78, 136, 174, 205-6 Sociological imagination, the, 107 Sociological perspective, 24-25, 29, 196

46, 147 accommodating to illness, 140, 142 Stalking mentality, 114, 121 Strauss, Anselm, 73 Success stories, 56, 170-71, 178-

79 Suicide, 22, 28, 36, 53, 61, 71, 88, 103, 120-21, 125, 135, 139,

144, 187-88, 195> 198, 217 aftermath of, 188 attempts, 36, 53, 88, 121, 187, 195 of a parent, 188, 217 preventing, 103, 120 rates of, 187-88, 198 threats of, 121, 139 Support groups, 23, 64, 155. See

also Family and friends support group; Self-help Symbolic interaction theory, 27in Sympathy, 15, 27, 30, 41, 51, 54, 59> 67, 75, 90-91, 106, 24243, 251 between parents and children,

Index

318

Sympathy (continued) cultural roots of, 242-43 drying up, 54, 59, 67 entrepreneurs, 243 exchanges of, 90

Therapy, 18, 20-21, 50, 153, 162, 174, 216, 219. See also Therapists Thomas, Darwin, 87 Thorazine, 117, 257

limits of, 30 margins of, 41, 51 and social status, 41 Szasz, Thomas, 256

Titticut Follies (film), 257 Tonnies, Ferdinand, 237 Tough love, 186 Tracy, Spencer, no Trial, The (Kafka), 191 Tuesdays with Morrie (Albom), 246 Turnbull, Colin, 31 Travel, 43, 44

Taylor, Steven, 31-32 Teacher/student boundaries, 20-21 Teresa, Mother, 245 Theories, 28, 149, 151-53. 155. 159, 161-63, 166-67 i72-73> 175-76, 188-90, 234, 279n competing, 162-63 construction of, 155, 166-67 difficulty abandoning, 17576 everyday, 28, 151

family conflict about, 16162 about obligations, 234 practical, 151-52, 279n self-fulfilling, 159 of social scientists, 152, 173 Therapeutic culture, 154, 213 Therapeutic state, 213 Therapists, 21, 99, 162-63, 168, 196, 199, 218, 227, 231. See also Therapy disagreements with, 163 evaluation of, 162

Undoing Depression (O'Connor), 178 Vacations, 35-37, 141 Violence, 4, 115, 135-36, 255 Vocabulary of motives, 153, 244 Volunteer activity, 242 Wall Street (film), 239 War Against Parents, The (Hewlett and West), 261 Wealth inequality, 248 Weber, Max, 190, 219, 237 Welcome To My Country (Slater), 19 Welfare, 61, 247-48, 262 corporate, 262 debates, 61, 247 in Scandinavia, 247

Index

West, Cornell, 261 Why Men Stay, Why Men Stray (Kelly), 244 Wilding of America (Derber), 31

319

Wounded Storyteller, The (Frank), 18 Wolfe, Alan, 234 Wuthnow, Robert, 242

The Burden of Sympathy: How Families Cope With Mental Illness - PDF Free Download (2024)

References