Being an at-home HIV caregiver means taking care of finances, paperwork, and health concerns. It also means protecting your loved one from illness.
Being a full-time caregiver of a person with HIV or AIDS requires additional responsibility and constant attention to situations that could pose a danger to someone with HIV. When HIV develops into AIDS, and AIDS progresses, caregiving can become even more difficult. Before things get too overwhelming, it’s important to think ahead and prepare for the care that your loved one will need.
Progression of AIDS and HIV
While HIV can advance to acquired immune deficiency syndrome (AIDS), not everyone with HIV will go on to develop AIDS. People who do develop AIDS frequently experience severe complications from the virus, and in most cases, AIDS is ultimately the cause of their deaths.
“Now that we can diagnose HIV earlier and we’ve got medicines to treat it, not all of these people with HIV go on to develop AIDS. They could potentially live a full life,” says Jennifer A. Shuford, MD, MPH, director of applied science at the Medical Institute for Sexual Health in Austin, Tex.
But in cases where HIV does progress to AIDS, perhaps because of resistance to medication or lack of access to treatment because of location or finances, it’s important for patients to have someone to rely on when complications arise. Eventually, the person’s physical deterioration becomes more severe and caregiving responsibilities increase.
“People become very debilitated as their immune system fails, and this is often accompanied by extreme weakness and dementia,” says Dr. Shuford. Life-threatening infections and cancer are also common in AIDS patients, as the immune system can no longer fend off bacteria and viruses that cause illness.
As the disease progresses and your loved one becomes weaker, you may need to help with toileting, bathing, and feeding responsibilities. You’ll also need to be able to recognize an AIDS-related emergency and call for emergency medical help when it’s needed.
HIV Caregiver Responsibilities
People with HIV will have many different needs throughout the course of their disease — some that you can provide, and some that you can’t. An HIV caregiver can help by:
- Monitoring medications. Make sure your loved one is taking his or her HIV medications as prescribed.
- Reducing the risk of transmission. If your loved one has a cut or a wound, begins bleeding, or vomits blood, you’ll need to carefully (wearing gloves) clean up the blood to prevent transmission to another individual in the home.
- Getting a flu shot. You don’t want to bring home the flu, which can be extremely dangerous for an individual with an immune system weakened by HIV or AIDS. So protect your loved one — and yourself — by getting a flu shot.
- Not allowing sick people to visit. Since people with HIV have compromised immune systems, they can easily pick up minor infections, which can quickly become serious. Keep anyone who is sick or sniffling away from your loved one.
- Washing your hands. Limit your loved one’s exposure to germs by keeping your hands clean and always wash before you touch or feed your loved one.
HIV Caregiving: Making the Home Environment Safe and Comfortable
The most important changes a caregiver can make at home are those that keep your loved one safe and comfortable. This means preparing your home for a wheelchair if necessary, says Shuford, and taking precautions to protect an HIV patient who has developed dementia. Make sure that they can’t wander or fall down stairs, and put away any sharp objects or other hazards so they can’t cut themselves in the bathroom or kitchen.
HIV Caregiving: When It’s Time for Help
End-of-life planning is another responsibility of an HIV caregiver. While it’s difficult to think about, it’s one of the best things you can do to help your loved one and yourself if the disease advances quickly.
“The primary care physician or the HIV caregiver should be able to say when the patient is in the end stage,” says Shuford. “If they have six months or less to live, it’s appropriate to contact hospice care. Hospice care is very important and a huge boon for people who are in their end stages of life.”
Shuford notes that it’s the caregiver’s responsibility to talk to the doctor about the appropriate time for hospice care, rather than waiting for the doctor to suggest it. “It’s very important to contact [hospice care] before the patient thinks they need help rather than after. The [hospice professionals] are the ones trained at dealing with end of life care,” notes Shuford.
It’s impossible to predict how your loved one’s HIV disease will progress, what complications might arise, and what help you might need to provide. “Caregivers need to be open to whatever course it takes,” says Shuford. And in the meantime, you can take steps to keep your loved one comfortable, happy, and safe.