Caring for a loved one with AIDS can be an exhausting task, both physically and emotionally. It involves managing the physical and practical aspects of your loved one’s care while struggling with the emotions of seeing someone you care for suffer and fearing the eventual outcome of the disease. It also requires taking care of yourself -- managing the stress of caregiving and keeping yourself healthy -- so you can provide the care your loved one needs.
AIDS (acquired immune deficiency syndrome) is caused by the human immunodeficiency virus (HIV). People infected with HIV can develop AIDS, but not all people with HIV have AIDS.
Gloria Reuben first started grappling with HIV issues as part of her role on ER, as physician assistant Jeanie Boulet, one of the first openly HIV-positive characters on prime-time TV. But soon, the scripts began to take over her off-duty thoughts. “It follows you around wherever you go,” says Reuben, who was on the ER set until 1999. And when she accepted an invitation to a fundraiser from the late Elizabeth Glaser, she stepped into a new role as an AIDS activist.
This past July, Reuben, who now...
You will need to work with your loved one to decide what needs to be done, how much you can do, and when additional help will be needed. It’s important to be in contact with the person’s doctor for updates on health changes and care needs.
Tips for AIDS Caregivers
While specific needs will vary, these general tips will be helpful for successfully caring for someone with AIDS:
Get educated. Learning about AIDS is an important first step for caregivers because of widespread myths and fears about the disease. Learning more about the disease will not only help you know what to expect and how to care for your loved one, it can alleviate fears -- such as the fear of exposing your loved one to dangerous germs and suffering from pain or symptoms of disease or complications. You can learn skills for taking care of someone with AIDS and how to manage special situations through courses offered by organizations including the Red Cross, Visiting Nurse Association, HIV/AIDS service organizations, or your state health department.
Make the person with AIDS feel at home. For most people with AIDS there is no place like home. To make your loved one feel at home, ask what you can do to make that person comfortable. Many people are shy about asking for help, especially with tasks like bathing or using the toilet. If possible, let the person stay in a room that is close to a bathroom. Leave items the person might need, such as tissues, towels, or blankets, in easy reach.