Three family caregiving patterns were discerned: Insulating from the outside world, prioritizing education over well-being, and reciprocating the sacrifice. Insulating from the outside world and prioritizing education over well-being describe how parents organized their world to cope with their child’s mental illness; reciprocating the sacrifice describes how adult children adapted the Confucian-inspired notion of filial piety. Insulating from the outside world describes the family’s approach of accepting a member’s illness and managing it within the family, whereas prioritizing education over well-being refers to families who embrace the Confucian notion of parental obligations and make the education of the child their primary goal.
Insulating from the outside world
Insulating from the outside world describes the effort of a family to accept a member’s illness and to manage it within the family. This effort does not seem to be an aversion to stigma or shame. Rather, a family feels deep sorrow about a member’s illness, accepts the chronic nature of the illness, worries about the stigma and hardship the member may experience in the outside world, and tries to provide him or her with safe sanctuary. They thus manage the family member’s illness by insulating him or her from the stressors of the outside world. Among the six participants, three demonstrated this management style: a mother, a sister, and a single mother.
How the Q family cared for their son illustrates the notion of insulating from the outside world. The Qs decided to emigrate to the United States when their son (BQ) experienced difficulties in school and was subsequently diagnosed with schizophrenia. They hoped to find a more accepting environment for his problems in the U.S. When he began having problems in school again in the U.S., the parents decided to home-school him to prevent his being labeled a “failure”.
Mrs. Q: My husband was not enthusiastic when I started talking about homeschooling B (her son). My husband would tell me to let him do whatever he wished and to stop focusing on education. But, he agreed to stop sending B to school before he was kicked out again. Multiple failures in school are not a great record to have.
Mr. Q had resigned from his managerial job in Korea, took a blue-collar job in the U.S. to support his family, and later opened a small gift shop. Although it has been 4 years since the family moved to America, Mrs. Q still “felt that somehow unsettled in the U.S”. Even though B was 16 years old, Mrs. Q described him as if he were a little boy. In the small world that they created in the gift shop, their son was safe and cozy.
Mrs. Q: He seems O.K. in the shop. It is quiet and not many people bother him. He reads books, plays game station, and helps us cleaning. He’s very good at it. He does the cashier sometimes. He gets anxious and start making noises when he is around with lots of people, so we rarely go to public places anymore. We go to church and he knows everyone, so he does not get too anxious there.
A similar approach was discerned from the story of Mrs. K, a single mother caring for a daughter diagnosed with schizophrenia. Mrs. K owned two businesses: a newspaper stand and a clothing alteration shop. She took her daughter, who was in her mid-30s at the time of the study, to work each day. Mrs. K described her daughter’s activity as follows:
Mrs. K: When she (her daughter) was not in a “good mood”, she would lay down on the newsstand floor, withdrawn all day. Otherwise, she would help me selling newspaper.
By framing her daughter’s activity as “helping”, she conveyed that her daughter was a contributing member of society. The stigma of mental illness did not appear to concern Mrs. K because she openly discussed her daughter’s illness with her friends and church fellows.
Prioritizing education over well-being
Prioritizing education over well-being describes how parents embraced the Confucian priority of parental obligations: the education of one’s child. The parents viewed education as the only means to ensure their child’s self-sufficiency in the future. They seemed unable to modify their expectations for their child, despite his or her mental illness, and insisted that he or she earn a diploma or an academic degree. New care needs seemed to add to their already heavy burden. They frequently experienced disappointment and frustration in the process. They also reported having constant conflict with their child. To ensure their child’s academic success, parents aggressively sought support from their church, school, and local social service agency. Two single mothers showed this caregiving pattern.
Ms. S was a single mother caring for an 18-year-old son diagnosed with schizophrenia. When her divorce was finalized, she took custody of her daughter, and her ex-husband took the son. But when the ex-husband reported that the son had been skipping school, she decided to intervene and eventually took full custody of both children. She worked at night in a post office. With many responsibilities and little support, her life was always hectic and tiring. Making sure that her son went to school taxed her time and energy significantly.
Ms. S: After working night shift, I had to pick him up from home, dropped him off at the school, and pick him up after school. I slept in between, and had to catch up with all the house chores.
Despite Ms. S’s dedication, the relationship between her and her son was rocky. Their constant arguing about school attendance and school assignments led to disappointment and frustration on both sides. Because her son’s graduation was the paramount goal, Ms. S channeled her limited energy to its achievement while overlooking other areas such as how her son felt.
Ms. S: When I came home from work in the morning after the 8-hour night shift, the house was a mess with screws and electric wires on the floor. He could unscrew things but unable to reassemble them. So we had to buy lot of things again and again. I was angry. I was very tired but have to clean this whole mess. And the things that you need were destroyed and you have to buy them again. I was just angry. I yelled at him. But he had to go to school in the morning. He had a hard time to wake up because he hadn’t sleep at night. So I had to wake him up. I did not have a good chance to talk with him.
Although Ms. S was upset that her son constantly made a mess of the house, she did not confront him about his behavior. Instead of doing so, Ms. S dropped him off at school without comment. Yet, the bitter feeling of anger and disappointment lingered.
Ms. S reported that she visited his school often and demanded more assistance for her son. She constantly juggled new tasks with the old. Her approach toward her son’s care was reactive rather than carefully planned. For example, when the school psychologist recommended a specialist to assess her son’s attention deficit hyperactivity disorder, she assumed another task.
Ms. S: We had to go to the specialist once a week. Once we arrived at the office, I could not drop him off like in school. I had to wait until his session was over. It was so tiring. But I had to do it. He has to graduate at least high school.
She enlisted the help of church members to tutor and mentor her son. In fact, youth group members visited her son daily and tutored him throughout high school, which enabled the son to graduate. Ms. S shared her hope that her son would enlist in the military, which might provide more structure in his life.
Unlike Ms. S’s struggle to keep her mentally ill son in the community, Ms. L accepted institutionalization and social services to provide her son with an educational opportunity. After the son’s many hospital admissions, a psychiatrist recommended a residential program for adolescents that offered schooling.
Ms. L: I didn’t know anything about mental illness. So, when his (the son’s) doctor recommended a residential program and told me that he could complete high school there, I though it was a very good opportunity for my son. At least he could complete and earn his diploma there. He is a man. He needs to have at least a high school diploma. Or else, how can he find a job? How can he survive in this harsh world?
During the son’s treatment, Ms. L reported feeling ambivalent about having her son at home on weekends because she could not help him with his homework. She reported that they argued about homework “all the time, because he watched television too much”. Ms. L wished that her son could enter a residential program for adults after high school graduation so that he could attend community college.
Ms. L: I want him to go to community college. It’s better than staying home and doing nothing with a high school diploma. But, my son’s case manager told me that college might be too much for him. She said that he does not have enough skills to handle the stress. I think if he could go to another residential program, they should be able to help him be more disciplined.
Reciprocating the sacrifice
Reciprocating the sacrifice describes how a family adapts and enacts filial piety. Mrs. P was a 55-year old Korean American who took care of 78-year-old mother-in-law who was diagnosed with dementia. She shared this responsibility with her husband’s two brothers and their wives. During the cold Korean winter, the mother-in-law was sent to California where Mrs. P and her husband resided. Mrs. P explained that her mother-in-law sacrificed a great deal for her three sons and now, the sons were returning the favor by caring for her and by not institutionalizing her. Mrs. P confided that taking care of her mother-in-law was initially “an obligation that she really hated”. She resented the fact the she had to care for an in-law instead of her own parents.
Mrs. P: When I was young, I didn’t like the fact that a woman had to take care of her in-laws, not her own parents. When you had a son, you were kind of insured. And I just did not like it.
As Mrs. P grew older, however, she empathized with her mother-in-law. In their shared history and common life trajectory, Mrs. P saw herself.
Mrs. P: I feel sad by looking at her sometimes. I remember her when she was at my age. She was full of energy and very loving. She still is. It won’t be long before I get her age. When you become my age, then, you will understand. Nobody knows the future. Nobody expected she would end up like that, relying on her sons taking care of her.
For Mrs. P, her dedication had a bittersweet twist when she realized that, cultural changes being what they are, she likely would not receive the same kind of care from her own children.
Mrs. P: I cannot ask my children to take care of me. In my generation, it was how things were. So I didn’t have to think about it. Younger generation now… they are different. I don’t know if my son will take care of me. They say once you have a child, you will understand your parents. Who knows if my son will really understands me. And even though they do, their wives probably will not.
Mrs. P felt that sharing the caregiving responsibility improved her relationship with her extended family members, especially with her sister-in-laws. Because those sister-in-laws lived in Korea and Mrs. P in California, she did not have a close relationship with them. But after the family meeting 4 years ago, the sisters-in-law talked more often and longer, and their emotional bond grew. “We talk out of practical necessity as well as emotional needs”, Mrs. P reported.