HIV INFECTION AND ITS EFFECTS ON INTERPERSONAL RELATIONS: SYMPATHY AND WORRY-ONE SIDE: PEOPLE WHO TAKE CARE OF THOSE WITH HIV INFECTION ARE WORRIED”
My son had Pneumocystis pneumonia, then neuropathy,” said June. “He was very sick. It worried me so much, I didn’t even want to leave him alone at night.” Lisa, remembering the care of her husband, said, “It was such torture and grief, I wonder how I did it. I went out of town one weekend to visit friends. But I spent the whole time worrying how things were going, and finally cut the weekend short. I had to come home. I couldn’t stay away.” June’s and Lisa’s inability to leave their relatives is a measure of how connected they felt, of how little they could separate themselves. Caregivers’ feelings are varied and confused. They feel sympathy, they are co-suffering. They don’t know where the boundaries are between themselves and those they care for. They expect themselves to somehow know what the sick person feels and wants. Then they expect they should be able to supply it. They also understand, however, that no one really knows what someone else feels. They see the problems the sick person is having, and they try to figure out all the solutions. They feel guilty that they weren’t the ones struck by illness. They worry that at some critical moment—during a seizure, for instance—they will not know what to do, and the result of their not knowing will be a catastrophe. So they worry, they have an intense desire to know what is going on. “What do I expect myself to do?” said June. “Everything. I think, I will find out what’s wrong with my son. I will get him cured. Once I was even going to carry him the 60 steps down from his third-floor apartment. I am going to do it all.” Needless to say, no one, no matter how strong and determined, can do everything. Caregivers who try to do everything inevitably have periods when they burn out. They feel depressed, hostile, impatient, agitated; they think they can’t cope, and they lose their sense of humor. They have trouble concentrating and sleeping, and sometimes they overeat or drink too much or rely on drugs. They get sick and feel distant from other people.
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