Alan Madison: One of the worst thoughts for me is, I don’t want people taking care of me. No one wants to give up that control. I come from proud people. I’ve always felt the need to do it on my own. No One Wants to Give up Control-Like Alan, all people want to “do it on their own.” By that, they usually mean that they do not want to rely on other people; they want to rely only on themselves. They take care of their own needs. They want to do their fair share in a relationship, not only taking advice and help, but also giving it. When something goes wrong, they fix it; when someone has a problem, they solve it. They can do what they set out to do. In short, they have the sense that they are in control of their own lives. HIV infection seriously undermines a person’s sense of control. People with HIV infection have intervals of illness during which they depend on others for things they normally provide for themselves. Their dependency ranges from needing someone to shop, clean, and cook for them to needing someone to dress, bathe, and feed them. They dislike this dependency. They say that being dependent is hard on their self-esteem, their sense of self-worth. They don’t feel like normal adults any more; they feel like babies. Their caregivers have a different problem with the sense of control. Instead of feeling dependent on someone else, they feel helpless to change things. The person they love is sick and in emotional pain, and they can do nothing to fix that. They can fix problems that are physical—they can shop, clean, cook, give medications, talk to doctors, dress and bathe and feed the person they love. But problems that are emotional—anger, depression, fear, guilt—are often unfixable, or at least not fixable in the same way. Caregivers still want to fix them, to correct them, to make them disappear. Faced with an inescapable virus and inevitable emotions, caregivers feel helpless and stupid. Different aspects of loss of control bother different people. Some dislike what seems like a reversion to childhood: at times, they need to be changed, bathed, dressed, groomed, fed, driven. Helen Parks, who has lived alone all her adult life, says she worries “about moving in with my parents and not having time to myself and having to have my dinner fixed and my clothes washed. I won’t have my mother drive me or change me.” June’s son, who had been a doctor, now lives with her: “It was hard for my son to come home at age thirty-four and have his mom care for him,” she said. “How much he can do for himself depends on how he’s feeling. He always wants to do as much as he can for himself.” Lisa said her husband “had a tremendous fear of being bedridden and me caring for him.” Adults who must accept being cared for like a child feel they are a burden. Because their bodies must be cared for by others, they feel they have lost their dignity. Some young people with HIV infection are upset that they may be unable to take care of their parents. They see this as losing control. They had expected, as they became adults, to care more and more for their parents, and they dislike the reversal in roles. Steven has two aging great-aunts and a grandfather he feels responsible for: “I should be taking care of them. I should see that they’re getting their medication or their new glasses. People shouldn’t be doing these things for me.” Other people hate giving up their roles with their partners. Lisa said that the more she took out the garbage, paid the bills, and mowed the lawn, the more her husband felt he was losing control, and the unhappier he became: “Sometimes he was grateful,” she said, “and sometimes he just screamed.” Dean said, “My partner used to be a cook, it’s okay with me that he does most of the cooking. I had always done the heavy work, and sometimes still do. But sometimes I can make no contributions. The days I can’t contribute are awful, just awful.” Others worry about financial dependency on/their parents or on the welfare system: Helen says, “I’m surely not one for welfare.” As people get sicker, they depend more and more on the social service and medical systems. Both systems require people to give up control, one system over their personal resources, the other over their bodies. The requirements, though necessary, are distressing. People who give over control of their resources and their bodies feel they have little left of their own. They feel powerless, ineffective, and incompetent.
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