Editor’s note: To protect confidentiality and privacy issues, the person living with AIDS in this story will be referred to as Robert.
Every day is a routine for Robert.
Wake up, make coffee, feed and let the dog out, check the mail — a fairly average routine except for the 25 pills Robert has to remember to take every day.
Fatigue also sets in easily, transforming simple tasks into tiring activities. Robert is living with AIDS.
Since his diagnosis in 1999, medications have become a major part of Robert’s lifestyle. In his experiences, one problem can soon lead to another until eventually the pills begin to fight one another.
“I am diabetic from the side effects of one medication and I take medication for depression to deal with the mental challenge of having to take so many other pills,” Robert said. “It’s emotionally exhausting.”
HIV, AIDS cases
The U.S. Centers for Disease Control and Prevention estimates that at the end of 2007, there were 599,819 people living with a diagnosis of HIV infection and 470,902 people living with AIDS diagnoses in the United States. However, it is estimated that more than 1 million people are living with HIV in the United States and that more than 500,000 have died after developing AIDS.
Some months Robert may have three to five doctor visits. Whether it is exhaustion from emotional stress or physical ailments, fatigue sometimes makes it difficult for Robert to handle simple tasks such as driving to an appointment or carrying groceries from the car to his apartment. But Robert does not have to do these things alone — at least not anymore.
As a client of the Douglas County AIDS Project (DCAP), Robert has been introduced to a variety of helpful resources. One program in particular has made an impact in his life — the Buddy Program.
Thanks to volunteers who serve as “buddies,” the program has helped clients such as Robert transition from isolation and depression to freedom and comfort.
History of the program
In the beginning there was nothing — no services, no money, no knowledge, no education, no social support, no recognition by the medical and political establishments. These remarks from Tom Weber, Buddy Program coordinator at Gay Men’s Health Crisis organization in New York, sum up the perception of AIDS in the 1980s.
That organization became the nation’s first volunteer-based AIDS service, as well as the first to establish the Buddy Program.
“Nobody planned the Buddy Program,” Weber wrote in an article for Body Positive Magazine. “Buddies evolved organically out of need.”
Many times people with AIDS had nowhere to turn for help with the simplest and most necessary tasks.
As the need rose, community organizations were founded to spread information and take care of the sick and dying.
“Buddy assignments in those days were made on the assumption that clients were not going to live long and that their buddies would be assigned to them until they died,” Weber wrote.
However, what was once assumed to be inevitable — early death — is no longer so certain. Because of advancements in medication, most people with HIV and AIDS are living longer, with a higher quality of life.
In some cases, such advancements caused some programs to disappear over time. The Douglas County AIDS Project in Lawrence faded because it was no longer seen as something people needed.
But that was not the case.
Whitney Gudgel, coordinator of the Buddy Program for DCAP, said the program was reinvented early this year to provide clients with a long-term, supportive relationship with an agency volunteer.
“We have transformed from being end-of-life hospice care to a service designed for practical and emotional support,” Gudgel said.
So what is a buddy? A buddy is a trained volunteer who works one-on-one with a specific client. A buddy is a social contact, a listener, an advocate and a helper with the tasks of daily living. As a buddy, volunteers may do anything from providing transportation and running errands to just listening and providing companionship.
Buddies in action
Robert has two buddies. He frequently goes on social outings with them — coffee or dinner, as well as practical errands such as grocery shopping and doctor’s visits. He said he can count on this buddies.
“It would be hard without them,” Robert said. “Family and the agency aren’t always there so they’re support when others can’t be.”
Robert admits that he was a bit of a recluse at one time. He said he has no desire to go out by himself, and support groups weren’t enough. That is where his buddies came in.
“My buddies aren’t just volunteers, they’re friends,” Robert said. “I can laugh and smile and just be myself around them.”
The buddies in question, Pat Phillips and Lisa Miller, have been involved with DCAP since the mid 1990s. Miller said she has known people with HIV and decided to join the program to help give support to those in need. She said the reward for her is just being able to meet new friends and offer help.
Since becoming buddies, Phillips and Miller have had several clients, five of whom have died. Phillips said it is quite an experience to watch someone go through the end of life.
“It’s like losing a member of your family,” Phillips said. “You develop a friendship, a trust.”
But, for all the sad memories, Phillips and Miller said they have had just as many or more fond memories.
To them, Robert is a member of their family. “It’s important because they know they are not alone — they know they are accepted,” Miller said.
Today, five of DCAP’s 50 clients are involved with the Buddy Program. Gudgel said her goal is to create a community where clients feel connected, supported, wanted and involved.
“Buddies are able to go in and do the work I can’t,” Grugel said.
The agency is looking for more buddies. For more information, contact DCAP at firstname.lastname@example.org or 843-0040.