AIDS DEMENTIA COMPLEX: HIV AND THE CENTRAL NERVOUS SYSTEM-TO THE CAREGIVER
To a caregiver, these symptoms—forgetfulness, lack of concentration, apathy, lack of self-care—often seem to be an emotional response to having AIDS. Caregivers often believe the symptoms would clear up if the person just paid attention, just cheered up a little, just got involved, just tidied up, just tried a little harder. But these symptoms are not an emotional response to the disease; they are the disease itself. The virus is affecting the parts of the brain responsible for attention, interest, and memory. The person with the virus cannot control its effects. Because the person with AIDS dementia has less control, caregivers should try hard not to take away whatever sense of control the person has left. This means finding the line between helping someone out and taking away his initiative. Caregivers have had to find this line all through the course of the disease, but it may be more difficult now. People with dementia can change from day to day. Sometimes they seem unable to care for themselves, sometimes they are the people they’ve always been: “I never knew when the dementia was going to be there,” said Lisa. Caregivers say it’s like being on a rollercoaster. They have to assess from day to day what the person they’re caring for needs and does not need them to do. Though dementia makes it more difficult to balance helping with taking away control, the same principles apply as in other aspects of the infection. Probably the most important principle is to allow the person to set the limits on what he can and cannot do. “My A-number-one priority was, my husband felt in control,” said Lisa. Lisa’s husband resented it if she tried to fix household machines, so she stopped trying, and although he took all day and the lawnmower never worked quite the same afterwards, he did fix it. “I found that he worked around a lot of his own impairment,” she said. Later on in the course of the dementia, when apathy and motor problems are more severe, caregivers take over more and more responsibility. They find that people with dementia seem to do best in an environment of structure and routine: eight o’clock is always breakfast, nine o’clock is always bath; sweaters are always on the top shelf; Fred comes to visit on Tuesdays. They find that they feel better if they try to stimulate or divert the person with dementia, and the person with dementia seems to act better. They talk about the day’s events, turn on the radio, watch TV together. Caregivers gradually come to terms with the reality of the limitations of the person they’re caring for. “I learned to accept his apathy,” said Lisa. “When it was important, / did it. If not, I let it go.” Eventually, accepting the limitations of the person with dementia means being a full-time caregiver. The people with dementia can finally no longer stay home alone—they fall downstairs or burn themselves in the kitchen or wander out of the house. Eventually, caring for a person with dementia is like caring for a small child. Rarely, the person becomes extremely agitated or frightened or convinced that people are trying to hurt him; he may start hearing voices. In that case, call your physician, who will call a psychiatrist or neurologist to assist in selecting medications to control these symptoms. All this is hard on the caregiver. Lisa said she felt her husband was disengaging from her: “I took it personally at first, though I knew he was just more apathetic and withdrawn. I felt like I was going through a divorce. So many of the things we used to do to feel close, he lost interest in. I was really hurt by that. It was hard to get past this.” Lisa and other caregivers gradually begin taking on the role of parent, and gradually begin living as though they were single. Lisa joined AAA to get the car fixed, and she took out a maintenance plan on the furnace. Now, especially, caregivers need to surround themselves with people who give them sympathy and support. Much of the course of dementia is harder for the caregiver than for the person with dementia. Caregivers need to remember that a person with dementia is not feeling lonely or rejected; he or she seems untroubled and truly content to look out the window. When caregivers need to go to work, or take a break, or continue their lives, they can forgive themselves. Most caregivers will need to use such outside resources as community-based health organizations or AIDS-advocacy organizations that provide patient services. Many will benefit from support groups intended for caregivers. Support groups offer the opportunity to talk with others who face similar situations, and to learn of special resources or techniques that have helped others in similar circumstances. Social workers provide special expertise on programs like occupational therapy and day care services, which occupy the person with dementia and give caregivers a break. Some of these resources are available through public funds for people with HIV infection, some are available from insurance plans, and some are available from volunteers at community-based health organizations. The individual needs and resources available to each caregiver are highly variable. What is clear is that the caregiver of the person with advanced AIDS dementia, no matter how committed and loving, needs respite, assistance, and resources. Some will find that their desire to achieve a structured and caring environment in the home is simply unrealistic. Similar structure and care can then be achieved in nursing homes or hospices.*150\191\2*
