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AIDS DEMENTIA COMPLEX: HIV AND THE CENTRAL NERVOUS SYSTEM-PROBLEMS WITH SELF-CAREA

long with apathy come problems with self-care. Eating, drinking, dressing, and staying clean all come to mean less and less. “Some days I’d come home from work,” said Lisa, “and he’d be sitting in a hot house in the middle of summer with the windows closed, no fan on, and he hadn’t eaten all day, or just ate junk food. Once I made hard-boiled eggs and he made himself an egg-salad sandwich. But usually if I made extra for supper so he could heat it up the next day, he forgot it, or would think cupcakes were easier.”     Eating and drinking are the most immediate problems with self-care, because people with AIDS need to eat good meals. People with dementia lose the internal drive to eat and drink. Lisa complained that she made food for her husband, then asked him if he’d eaten. Her husband would say he had, that it was easy and all he had to do was put the food Lisa left him into the microwave. But in fact, Lisa’s husband did not eat—somehow, he couldn’t think of the steps involved in taking the food out of the refrigerator, putting it into the microwave, taking it back out, and eating it. Or else he didn’t notice he was hungry or didn’t care. Caregivers have to try reminders—to make phone calls or set up routine supper dates. They also need to make eating and drinking as convenient as possible—a dorm-sized refrigerator or a cooler full of juices and snacks by the bed keeps food and drink within easy reach.     Staying clean can also be a problem. “Sometimes my husband was not as clean as he should have been, and would go days without a bath,” Lisa said. “He’d say, ‘I don’t need a bath,’ and would resist any reminding.” Lisa found that the only thing that got him into the bathtub was bribery. “Compliments didn’t work,” she said. “Sweet talk did sometimes. But bribery was the best. He’d need to see some concrete benefit—I’d usually bribe him with bread pudding. I’d say, ‘I’ve got some bread pudding in the kitchen. Why don’t you get a bath, and put on your robe, and we’ll eat that bread pudding?’” Other people are not as resistant to bathing as Lisa’s husband and will respond to “You haven’t had your usual bath. Need any help?”     Making certain the person changes clothes regularly can be accomplished easily: clothes that have been worn can simply be put in the laundry and fresh clothes set out. “Every morning I’d lay his clothes out,” said Lisa, “and every night I’d throw them in the hamper. Otherwise, he wore the same clothes.”     Sometimes, in the later stages of dementia, apathy gets the better of the person in the midst of bathing or dressing. Lisa would put her husband in the shower and he would not bother to come out. Or she’d help him with one sleeve of a shirt, and he would not put his arm in the other sleeve. Sometimes people seem to lose their sense of modesty and don’t dress appropriately. At these stages, the caregiver needs to be around fairly constantly, and to remind or help the person to finish up the process that was started.*148\191\2*

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