MANAGING CARE FOR A LOVED ONE WITH HIV OR AIDS

By Janet Taylor, M.D., MPH

The Human Immunodeficiency Virus (HIV) is a virus that weakens the body’s immune system and ability to fight disease. In time, it can lead to AIDS, or Acquired Immunodeficiency Syndrome.

HIV is not spread by hugging, shaking hands, using telephones or from insect bites, but through blood, semen, vaginal and preseminal fluids, or breast milk. HIV and AIDS are transmitted during unprotected anal, oral or vaginal sex with someone who is HIV-positive; through blood-to-blood contact such as transfusions or sharing a needle with an HIV-positive person; or from a mother to her child during pregnancy, at childbirth or from breastfeeding. Although there is no cure for HIV or AIDS, newer treatments are slowing disease progression so patients can maintain their quality of life for many years.

As someone caring for a loved one with HIV or AIDS you may be “on-call” 24/7; you may not have previously cared for a critically ill person; and you may never have seen someone die. Your role is often a critical lifeline for your loved one because you are likely the first one to recognize any change in his or her health. You may be the one contacting the healthcare professionals, and seeking medical assistance. As a result, stress associated with caring for a loved one with HIV or AIDS can be significant.

Practical Tips for Day-to-Day Care of Someone with HIV or AIDS

As a caregiver of someone with HIV or AIDS you are able to offer support and unconditional love to help give your loved one a sense of security and well-being.

In addition to emotional support, you may be responsible for practical day-to-day care of your loved one. Here are some tips to help you manage day-to-day care:

Personal hygiene—If you assist your loved one with dressing, grooming, bathing, or toileting, rest assured that the HIV virus is not spread by saliva, tears, urine, or feces. Still, if the feces, urine or bodily fluids contain any traces of blood, it is possible to transmit the virus. That’s why it may make sense to take preventive measures and wear gloves when bathing or toileting your loved one. Wear latex gloves to handle clothing or bed linens soiled with any body fluids and then wash them with regular laundry detergent, and don’t share any type of jewelry, nail clippers, toothbrushes, or razors which may have been in contact with your loved one’s blood.
Meal planning—selecting healthy foods and fixing well-balanced meals are very important, particularly because a person with HIV or AIDS needs fuel to fight the virus. It is recommended to avoid raw foods such as sushi or uncooked meat and eggs, to drink bottled water, and to be very careful with food preparation since food that is not cooked or prepared properly can lead to infection. You should always wash your hands and any cooking utensils before and after preparing each food item and take care to use separate cutting boards for meat and vegetables. Be sure to wash fresh fruits and vegetables very well and remove the skin, use only pasteurized milk, cook meat thoroughly, and don’t prepare any raw eggs or any food products containing them.
Household chores—cleaning at least once a week to minimize dust and germs, as well as washing laundry will help keep the household free of infections.
Transportation —providing rides and accompanying your loved one to medical appointments and the pharmacy, or simply running errands such as walking the dog can be tiring and stressful. It may help to write down and prioritize all your tasks, and consider asking for help from others.
Treatment -One of the most important tasks as a caregiver may be to help your loved one manage their treatment regimen. HIV and AIDS treatment can be complicated and involve multiple medications, all of which must be taken at different times and with different specifications (with food, without food, etc). As a caregiver, it’s also important to make sure medications are taken and refilled as prescribed and also to keep track of what medications are taken when. Some caregivers find it helpful to have a pill box, or a schedule on the refrigerator of different medications and when they should be taken.

Communicating With Your Loved One

Stress and fear can affect your loved one, as well as yourself, after an initial diagnosis. These emotions, and many more, may be experienced as your loved one receives treatment for HIV or AIDS. Sometimes, it may seem like you are on a roller-coaster, with very good days plunging down to bad days.

You can encourage discussion, when appropriate, with your loved one and others whom he/she feels comfortable with about the disease and its implications. You can discuss thoughts and fears and really listen to your loved one. It may be important for both of you to acknowledge your feelings. Doing so can help address everyone’s fears and protect your loved one from feeling isolated.

Advanced HIV or AIDS

If your loved one has an advanced HIV infection or AIDS, s/he will want to continue making decisions about care and lifestyle as long as possible. Be supportive of your loved one’s decisions, but be prepared to step in when he or she can no longer manage care physically or emotionally. As AIDS progresses, your loved one may experience dementia, which can render him or her unable to communicate with you or make decisions on their own.

In caring for your loved one with advanced HIV or AIDS, take additional steps to remove germs from the household that potentially could cause infection and compromise your loved one’s health.

If your loved one spends a significant amount of time in bed, he or she may develop bedsores and cracked skin which increases his or her risk of infection. Learn more about bedsores in this article. You can help prevent bedsores by helping your loved one adjust positions in bed if he or she is able to. Also ask your loved one’s doctor if there are any exercises your loved one can do to “keep moving” his or her extremities and joints while in bed.

If your loved one’s condition warrants more assistance than you can handle, check with a local AIDS support organization (ASO) for additional services (see lists below). There are many wonderful people and groups out there who will help you.

Taking Time for Yourself

When caring for a loved one with HIV or AIDS, it is also important to take time for yourself and recharge both physically and mentally. Try to schedule time for a relaxing walk, a favorite book or magazine, a nap, or a talk with a friend. If you need a break, contact your local ASO to find out about volunteers, respite care, or support groups.

To learn more about caregiving services and support for loved ones with HIV or AIDS, visit:

Listing and links to AIDS Organizations (ASO) in the U.S.
The Body: Multicultural, non-profit, faith-based HIV/AIDS organization provides services and support to people living with and caring for others with HIV/AIDS
The Center for Palliative Care: Resources on HIV/AIDS palliative care