Families Coping with Mental Illness

Stories from the US and Japan

Yuko Kawanishi

• Publisher: Routledge
• Year: 2007
• Print ISBN: 9780415952019
• eBook ISBN: 9781136770678
• Topic: Psychology
• Subtopic: Mental Health in Psychology
• Index: Psychology

When someone develops a mental illness, the impact on the family is often profound. The most common treatment processes, however, focus on the patient while the loved ones are relegated to subordinate roles and sometimes even viewed as barriers to effective recovery. Families Coping with Mental Illness approaches these issues from the family's perspective, studying how they react to initial diagnosis, adjust to new circumstances, and cope with the situation.

Through her own original research in the United States and Japan, Kawanishi presents a cross-cultural experience of mental illness that examine both psychological and sociological issues, making this book suitable to all international fields engaging with diversity and mental health. Including first-hand accounts along with analysis and discussion, Kawanishi gives voice to family members and adeptly identifies universal themes of resilience, adaptability, and strength of the family unit. This innovative text offers a unique viewpoint that will appeal to a wide audience of professionals and non-professionals from a variety of backgrounds.

PART I

Overview

CHAPTER 1

Mental Illness in the Family: What Does It Mean?

“This couldn’t be happening to my family!” said 52-year-old Ken Morris.

“Well, at that point, I knew he was terribly sick. I just had no idea what the problem was. This couldn’t be happening to my family. It just couldn’t.” Ken was a successful real estate broker, living comfortably in Los Angeles with his wife and his 20-year-old twin children, Charles and Lucy, who were both in college. Ken had always been proud of being a high achiever. The Morris family goal was to “achieve everything we put our mind to.” From the beginning, he and his wife had taught their children the importance of setting goals and working successfully toward them.

“This” meant schizophrenia, which had begun to afflict Charles, now 27, seven years earlier. It hit Ken and his whole family like a thunderbolt, without warning. Until then, Charles had been not only a normal, healthy college sophomore, but also, in his father’s words, “quite the little superstar.” Charles had won a national paddle tennis championship at age ten, he went on to become a football and volleyball star, and his efforts had helped to secure a prestigious award for his school. He was a popular champion and his future looked bright. He was a proud son who lived up perfectly to his father’s expectation — to “do the best you can possibly do” — in whatever he set his mind to. The signs of impending tragedy were elusive at first, but soon they grew too conspicuous to ignore.

Seven years ago, Charles returned home from college one weekend, and Ken and his wife discovered him wandering around, disoriented, in thefront yard of the house. They did not think too much about it then. But two weeks later, Lucy, who was attending another university in the same area, called home, saying that when they had shared a ride back to school her brother was very upset about something unimportant and had cried most of the way back. “So, basically, that was the first time we really felt that there was something wrong,” Ken recalls.

Ken and his wife immediately contacted the college psychological counseling office and made an appointment for their son. The counselor said that their son was depressed and suicidal, so they took him out of school immediately. They thought something was definitely wrong with Charles, but that it would pass once he came back home to stay with his parents. Neither Ken nor anyone else in the family had the slightest idea that this would develop into something far more serious. They thought it was only a phase. Perhaps Charles was finding college harder than they had expected. But six months had passed already since Charles dropped out of school, and a sense of uncertainty started to torment Ken. He began to search for information that could give him some understanding of his son’s situation.

I hoped that maybe after a six-month period, maybe after a semester at home, this problem would pass. I thought perhaps he was simply depressed about something. I felt it might be the school … his grades were suffering and he was sleeping all the time….

But Charles continued to be disoriented at home. He slept a lot and could not concentrate on anything. Ken gave his son some easy physical tasks, but the tasks were never completed. If Charles was supposed to paint a wall, after he finished painting, he would make marks on the new paint and ruin it. Ken and his wife discussed what to do, but they came to no conclusion.

It just wasn’t working out. You know, it just wasn’t working out.… I felt extremely frustrated because our family members have been very high achievers in everything. When somebody can’t achieve, it’s usually because he doesn’t want to. I felt very anxious. I felt very bad. I was trying to understand and help him, and yet, I didn’t understand what was going on. Was it because he was having those rebellious teenage years? Or was it because he was sick? Or … I just didn’t know. And the doctors weren’t helping me.

The situation continued to deteriorate. Charles became increasingly paranoid, antagonistic, and delusional, claiming his best friend across the street was stealing from him. He locked himself in his room because he feared that people were going to harm him. He ran away from home and lived on the street for several days. Eight months after Charles came home from college, Ken finally went to a psychiatric hospital with his son, who clung to him, afraid of being hurt by strangers. The hospital admitted Charles immediately.

When the doctor said “I think it is schizophrenia,” the reason that was supposed to explain his son’s behavior at last, Ken’s reaction was utter denial. Now, he looked for reasons why he should not believe the diagnosis.

That made me feel “I don’t trust this doctor.” This is a severe illness and how could he possibly know just by looking at my son? There’s no way. So I don’t trust this guy at all. I also don’t trust him because I saw his name on twenty different charts in the hospital.

Ken realized that obviously many patients were assigned to the doctor and immediately thought to himself that this man was getting paid $175 per patient each day, and there was no way he could accurately figure out his son so quickly. He did not trust the doctor’s diagnosis. His denial simply reflected his long-held perception on this illness: schizophrenia, in his mind, was just too devastating for anyone to accept. He remembers well how he felt.

Because there are dire consequences. Even consequences that I didn’t understand at the time. If my son had schizophrenia, his chance of holding political office was nil.… I’m saying the consequences for my son were severe. And I was very afraid for him. That’s why I did not want to accept the consequences.… He probably could not become a policeman. He probably could not hold down a job. He probably could not go back to school. He probably would not give me grandchildren. I mean, there’s just all these things. It’s huge.

The process of acceptance did not come easily. Ken’s quest for more information continued. He searched for a better diagnosis to convince himself the first doctor was wrong. He went to a mental health education group for parents and siblings, talked to one of his own relatives who was a psychologist, and kept changing doctors. “I spent a lot of money,” he said, only to feel he was not getting anywhere. He finally found a doctor who agreed to keep Charles under close observation for six weeks. Then Ken asked the ultimate question, “Doctor, do you have a book that you could give to me to explain what my son is going through?” The doctor handed him a book: it was about schizophrenia.

So schizophrenia keeps coming up and coming up and coming up, you know, so I had to start to accept it. And then I finally asked, “Well, how do you know he’s got schizophrenia?” And they tell me about DSM-IV. And they say, “Well, look. There are two pages and there are fourteen different symptoms. And if your son has ten of the fourteen symptoms, he’s got schizophrenia.” And I said, “Well, are you sure about that?” And the doctor said, “Let’s talk about this….

On the other side of the Pacific, Yoko Tomita, a 43-year-old city office worker in Tokyo, was struggling all by herself with the nightmare that was her new reality.

Every day I thought to myself this must be a dream. When I go home, I will see my healthy, normal husband waiting for me like before. Everything we went through would be a dream. With this expectation and wish, I would open the front door. But….

Yoko recalls how she used to live during those early days: giving herself a fantasy to cling to, an escape from the otherwise too harsh reality. “Except for that, I was completely thrown into everyday survival.”

Yoko and her husband, Eiji, met for the first time at art school in Tokyo. Eiji was 20 and Yoko 21: They were both studying fine arts and oil painting. It did not take long for these two passionate, aspiring artists to fall madly in love with each other. They soon started living together. When the financial support sent by their parents was no longer enough for the high tuition, both dropped out of school and began working to support themselves. It was by no means an easy time, but Yoko recalls it as if those bittersweet days were the happiest of their lives. Besides, she was very much in love, and against the odds, was very committed to the relationship.

We quarreled all the time. I knew he was an extremely sensitive man. That’s what I found attractive about him. At a supermarket, he would get upset when I picked up something and did not return it to the same place. He was also fussy about the way I talked. (I used to talk with little consideration for others’ feelings.) I was the kind of person who didn’t care about such things. So it was a big culture shock for me. But his attitude was consistent. He didn’t discriminate people because of status or ranks, he always treated everyone the same. I really respected him. No matter how much we argued, I never thought of breaking up.

Six years after they first met, despite strong opposition from her parents, they married. “In retrospect, it was like a fever. I had such a special feeling toward him,” Yoko laughs, with a blushing, innocent girlish smile. He took a job at a book-binding company for five years, and then at that point decided to concentrate on painting. She began to work at a social welfare office as a bookkeeper and supported his artistic activity.

Around 1988, Yoko noticed Eiji absorbed in washing his hands, talking to himself. It made her feel strange. He would purposelessly wander around the apartment, wadding up tissue paper and dropping it in the trash can. Then he started to insist that he had AIDS, “so separate my laundry from yours,” looking extremely intense and exhausted. Yoko would tease and laugh at him at first saying that he was like a raccoon. But she soon realized that this was not a joke. She finally turned to the local public mental health center.

At work, Yoko became increasingly isolated. The pressure at home intensified, making it difficult for her to take care of her husband and keep up with her work at the same time. She asked for a different job with fewer deadlines. Some of her colleagues who said that they would help out and fill in for her never really did anything for her, and she took it as a personal betrayal. The stress brought her close to the edge. Losing control, she shouted in the busy office, “I cannot quit working! Why can’t you give me a job I can do?” No one truly cared. She was completely alone. At least that was what she felt.

During many doctor visits, she had always believed that her husband’s problem was depression. When she was finally told in March 1989 that her husband in fact had schizophrenia, she was completely at a loss. It was the kind of shock greater than she had ever experienced. Utsu-byoo (depression) was one thing, but schizophrenia was something fundamentally different in her mind: it was “insanity.” The books in which she desperately searched for information only confused her even more. Having worked at the social welfare office for some years, she perceived that schizophrenia was in a separate category from other mental illnesses. Her own ignorance made Yoko feel shattered and hopeless. On the other hand, she remembers how surprised she was by her own sense of commitment to this relationship.

Soon after my husband was diagnosed as having schizophrenia, my mother came to see me. She asked, “So what are you going to do?” I didn’t understand what she meant. She meant was I going to get a divorce or stay married. When she asked me, I was surprised to realize that I hadn’t even dreamed of leaving him. I was just so confused then. I just wanted to do something about each moment. I never thought about my future. But I was really surprised by my own feelings, too.

The serious illness of a family member is always one of the most catastrophic events in life. It can threaten the family’s sense of stability with a myriad of difficulties and drastically affect family members’ psychological, social, and financial situations. It changes each family member’s relationship with the sick person in both the present and for the rest of his or her life. It radically forces a new situation on the family, ruthlessly requiring everyone involved to make significant adjustment whether they want to or not.

However, when the illness is a mental disorder, the ramifications are especially profound and pervasive. Mental illness has a strikingly unique nature in that it is most keenly perceived through the patient’s interactions with others and at the same time it deeply affects the state of the mind of other people who are not sick. This makes mental illness similar to a contagious disease. If one family member becomes mentally ill, no one else in the home can completely escape its influence.

In addition to the social and contagious nature of mental disorders, the chronic nature of its impact is a crucial element in shaping the family’s experience. The acute distress brought to the family by the onset and diagnosis of mental illness does not completely disappear. It remains as a chronic strain. The problem may become less noticeable in cases where medication and perhaps supportive therapy can stabilize the patient, enabling him to lead a pretty normal life. Nonetheless, it is often the case that while a mental illness can be managed, it cannot be cured — it is a permanent presence in the patient’s life and that of his or her family. For example, medication may have side effects that the patient finds intolerable, so he tries reducing the dose, only to have the symptoms of the illness return. A new medication will take some time to work fully, and in some cases the patient will not be able to tolerate it. Problems with medication may cause a previously stabilized patient to lose his job, and once more become a financial burden to the family. All of these uncertainties, which continue throughout the patient’s lifetime, cause incomparable levels of anxiety.

The impact of the chronic strain to human well-being cannot be overstated. Studies of the effects of stress have shown that chronic strain is a powerful predictor of depressive disorders and various health problems.¹ While the acute life event can invite more attention and support from others and is likely to lead to effective intervention, the chronically stressful situation can foster unhealthy inertia, often escaping necessary scrutiny and, therefore, chances for resolution. The daily stress of dealing with a mental disorder can be experienced by patients’ families in various ways, including “role strain,” which makes it impossible for them to fulfill their normally expected social roles and instead forces them to play an unwanted role as caretaker, often out of obligation.

Yoko Tomita remembers the moment when she realized that it would be she who would have to take charge of their household as well as protect her husband.

I was so distraught over what happened to my husband that I was overwhelmed by my own anger and sorrow. But one day I heard him crying in a worn-out voice, washing his hands, and telling (singing to) himself “Don’t cry, don’t cry….” He was extremely distressed about his condition, but was trying to encourage himself. I just felt so sorry for him and I was determined to be strong.

Yoko decided that she would become the head of the household and make all the decisions for their future. In a society where this was traditionally the husband’s role, she found her own situation even more isolated. She thoroughly researched the welfare system, classified her husband as her dependent, and obtained financial services for him, including a disability benefit. She managed to buy a small condominium, as well as mortgage insurance, just in case she died first, so that he would have a place to live. Suddenly all the financial burdens for now and the future were on her frail shoulders.

I’m not his parent, but I find myself taking that role in many ways. Several years ago when his condition was stabilized, and I finally started to understand this illness, I began worrying about his future. What if I get sick? What would happen to him? He has no contact with his parents and ...

Table of contents

• Cover
• Halftitle
• Title
• Copyright
• Contents
• Acknowledgments
• Introduction
• PART I. Overview
• PART II. The First Signs of Mental Illness: How the Symptoms Emerged and Became Permanent
• PART III. What Happens to the Family System?
• PART IV. Learning to Understand the New Reality of Illness
• PART V. Living with Mental Illness: Sources of Strength
• Epilogue
• Family Members Who Participated in Interviews
• Bibliography
• Index