In the 10 years she's worked as a volunteer in the buddy program at the Minnesota AIDS Project (MAP), Theresa Grunow has helped eight people living with AIDS through the final stages of the disease. The first few buddies she helped lived only a few months. But because of protease inhibitors, a new class of AIDS medications, things are changing. Grunow's been helping her present buddy, who's taking the lifesaving "cocktail," for about three years.
The new drugs may extend the life expectancies of many people with AIDS/HIV. But perhaps partly because people perceive the new drugs as a "cure," MAP and other service providers recently have seen declining levels of volunteers. Meanwhile, donations are down at a number of other local AIDS agencies, and some organizations that previously specialized in ministering to the dying are regearing.
For instance, MAP used to tell volunteers they were making a one- to two-year commitment to a buddy, but with the drug cocktail the life span of a person living with AIDS has been extended indefinitely. "And for some, longer than a one- or two-year commitment is too much," explains MAP Executive Director Lorraine Teel.
"There is a change in attitude to, 'How do I get on with or change my life,'" adds Grunow. "Now we're there more as a buddy to help people with AIDS live with it, rather than prepare to die from it."
Teel ascribes the declining numbers of volunteers at her agency to several causes: Of course, there's burnout. Many people are just plain tired of hearing about AIDS. Then there's the feeling among the general public that with the drug-cocktail therapy, volunteer organizations don't need as much help. Evidence that AIDS/HIV has been replaced in American minds by other societal problems might also be found in the results of MAP's annual AIDS Walk. Although more people showed up to walk at this year's event, when the numbers are finally crunched the funds raised will most likely fall short of last year's total by about $70,000, says Russ King, MAP's communication director.
All of this at a time when, Teel says, AIDS support services could most use the help. "The drug therapies have had both a positive and a negative effect. For some, wonderful things are happening. For others, nothing," she says. "But with the drugs coping becomes more difficult." Grunow's buddy, for example, is taking a combination of drugs that requires her to be a precision planner. Some pills must be taken on an empty stomach, some on a full one, and all at exactly the right time. Ironically, scheduling an outing or appointment is harder for Grunow than it was when her buddies were dying.
So although mortality rates are down, MAP and other service agencies for those with AIDS/HIV are having to expand their services. MAP has begun to offer workshops both to care providers and to those with AIDS about living with HIV rather than dying from it. Two recent sessions dealt with going back to work with AIDS/HIV, for instance.
Meanwhile, AIDS houses used to be talked about as a place for those in the last stages of the disease. Once you moved in you were unlikely to move out. But at Agape House, a Minneapolis hospice, Associate Director Linda Ernst says Agape is seeing more clients who are feeling better. Once they get their medication stabilized, they start talking about moving out of the care facility and even returning to work part-time, Ernst says. As a result, she says, Agape and other hospices are expanding their missions.
For those successfully using the drug-cocktail therapy, less direct care is needed, Ernst said. The Agape staff used to prepare everyone's meals. Now when they know a resident is thinking of moving out, they ask the client to help prepare meals. "We're saying, 'Look, if you want to move out, you might want to help so you're prepared.'"
Other possible roles hospices could fill are as providers of respite care, giving an invalid's loved ones an occasional break. The bottom line, say Ernst and others, is that the demands on the AIDS support network still outstrip its resources. In fact, the organization is building a second facility for Latino AIDS clients. "People still need support. People still need someone to talk to," says Ernst. "But the focus now is on independence rather than on funerals."
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