Information for caregivers

One of the best places for people living with HIV to be cared for is at home, surrounded by family and friends. Most people living with HIV will lead an active life for long periods of time and will not need to be in hospital. Being at home is usually more comfortable, more familiar, and gives those affected more control of their lives.

If you are caring for someone with HIV, you should first ask what kind of care and support they would like from you and others. If possible, you may consider getting advice from the person's health care provider on what kind of care is needed, but this should always be done with the consent of the person you are caring for!

Remember that if you are caring for someone with HIV and especially any AIDS-related illnesses, this will cause stress on both the person who is infected and on you. Caring for someone living with HIV is a serious responsibility and you should work with the person to decide what needs to be done, how much you can do, and when additional help is needed.

Here is a list of things to think about as a caregiver, adapted from Caring for a Loved One with AIDS: The Experience of Families, Lovers, and Friends by Marie Annette Brown and Gail Powell-Cope:

• Changes in your relationship with the person you are caring for are inevitable as his or her health changes. You may need to develop new ways of relating to each other. For example, give your loved one more slack, but don't let him or her take advantage of you.
• Sometimes the person you care for may forget that you have needs, too. It's okay to remind the person about things that are important to you.
• It's natural to want appreciation from the person you are caring for. Let him or her know that a "thank you" can go a long way. Let other family members and friends know it's important to feel appreciated and thank them when they help as well.
• The amount of help the person needs from you will vary. These changes can be difficult, and will require you to shift the amount of responsibility you assume.
• Remember that persons who are given on-going care may lose some self-respect when others do for them what they used to be able to do for themselves.
• You and your loved one are under stress, and conflict is natural and likely under these circumstances. "Choosing your battles" can help you keep the peace without sacrificing what is important to you.

Here are some resources providing information and support to caregivers. (Note: Links will open in a new browser window)

• Taking care of people living with HIV/AIDS
  This link is from the FAO/WHO manual called Living Well with HIV/AIDS. This section gives recommendations to people caring for people living with HIV, including how to care for yourself!
• HIV Positive.com
  Click on the link in the right column called "Those Wonderful Cargivers" for information on everything from emotional to physical support, for adults and for children.
• Caring for Someone with AIDS at home
  An informative brochure published by the Center for Disease Control, based in the US.