Helplessness, Dependency, and Control
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.
The balance between dependency and control is most often a problem for people whose HIV infection isn’t controlled by drugs and who have intervals of illness during which they depend on others for things they normally provide for themselves.
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 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 they have 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 can seriously undermine a person’s sense of control. 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.
Others worry about financial dependency on the welfare system: Helen says, “I’m surely not one for welfare.” Both the social service and medical 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.
Coming to Terms with Loss of Control
The trick is to balance acceptance of help with preservation of control.
First, don’t give up independence easily. “I have a friend with AIDS,” says Steven, “who sometimes asks me to bring stuff down from his attic or install his screen windows—things I know he can do for himself. I say no. I know, because I have other friends with AIDS, that he has to take some responsibility. Lots of people give up, but mental and physical health go hand in hand.” People feel better about accepting help if they think they’ve done their best to accomplish the task on their own first.For some people, some help is going to be necessary. Helen, who had worried about depending on her parents or on welfare, made her peace with getting help. “I know I’m not going to be able to count on myself for everything,” she finally said. “I’m not going to be afraid of saying I need help. My father and stepmother have been very supportive. My church will always help.” Some people feel they need help so badly they have no choice but to accept it. Some people feel they can accept help because they have helped others: what goes around comes around, they say. Some can accept help because they understand that their caregivers need to be involved with them. Some know that if circumstances were reversed and their caregivers were sick, they would help their caregivers. Some feel they have led good enough lives that they are worthy recipients of care.
Control What You Can
Finally, after you accept what you must, control whatever else you can. A friend of Steven’s felt he was being a burden to his parents and moved into a private home for people with AIDS; he liked the home particularly because he felt needed by other people there. Edward has had periods of sickness and always recovers but hasn’t much energy. He says he needs to balance dependence and independence: “I had to learn to ask for help,” he said. “And I had to grow new wings. But I dare not try to be too independent. You never know, you dare not burn bridges. It’s a humbling experience. It’s really important to maintain supports.”
If you cannot control your life in big ways, control it in small ways: you never lose control over everything.
Lisa would ask her husband, “Do you want the water glass here or there? Do you want to wear your blue shirt or your white one? Do you want cocoa or coffee?” When Dean went to the hospital, he took along his own lamp and radio. You can always affect the course or quality of your life somehow.This strategy of controlling what you can extends to the social service and medical systems. For more on dealing with the social services, see chapter 9; for more on dealing with the medical system, see chapter 7.
Control and the Caregiver
For caregivers, problems with control are different. Caregivers need to balance several things at once. They need to deal with their own sense of helplessness, to allow the people they’re caring for to maintain a sense of control, and to care for them, all at the same time. Maintaining this balance is tricky and confusing. “My husband is so much in control and I always push that,” Lisa said. “But it backfires. When he really needs help, like with getting meals when he’s sick, he doesn’t ask. Sometimes I help him anyway. I also wish I could help him with the emotional things too, by just sitting and talking. But I’m afraid of smothering him. I just don’t know where the line is.”
On the whole, caregivers should probably try to let the people they care for determine where the line is. The problems and feelings that people with HIV infection face can be resolved only by them. In fact, for people with HIV infection, being told solutions to problems they know are insoluble, or whose solutions only they can find, is annoying and intrusive. The best help caregivers can give is listening. Caregivers find it hard just to listen; they feel passive and helpless. Nevertheless listening, as Dean said, “really helps.”
Listening means being quiet, not interrupting, not judging, not giving advice, not trying to fix what’s wrong. It means paying sympathetic attention, drawing the person out. Try saying, “I’m interested in that if you want to tell me.” Or, “That sounds hard.
How are you handling it?” If the person is crying, don’t interrupt or make him or her stop. If you want to know why he or she is crying, wait until the crying is over to ask. Let the person cry it out—some things deserve tears. Listening also means picking up cues: perhaps the person does not want to talk, or wants to talk but is afraid of being a burden, or does not want help, or wants help but does not want to ask. The cues will help the caregiver decide how to act.Relabel What You Cannot Control
Some people maintain control by what mental health professionals call reframing or relabeling (see chapter 11). Relabeling means looking at situations in such a way that they seem benign or comforting or controllable. Try paying attention not to where your family or friends fail you, but to where they help. Try calling something a challenge rather than a struggle, a preference rather than a need. If the disadvantages of a situation are undeniable, so are the advantages. It’s as though your life were a story and you are writing it. It is your story, your life, and you can say whether it’s bad or good. You’re in charge of how you see things.
Edward was pleased that doctors caught an infection of cryptococ- cal meningitis early before he began getting the headaches he’d seen his friends endure. Edward also said that now that his partner has had to take over more of his care, they spend more time together and have become closer: “My being sick has made us closer, made us cherish our time together. It’s not depending, it’s mutual caring.” People with HIV infection who have to quit work say they are happy to have more time to spend on gardening, developing photographs, working on old cars, or anything else they enjoy. They say repeatedly that they are happy to have more time to spend with the people they love.
Relabeling can be done only by the person with the problem, not by anyone else, no matter how well-meaning the other person is. Having your problems relabeled by someone else is usually annoying.