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The Resource Train
Caring for the Caregiver

By Terri L. Wilder, M.S.W.

March 2000

At some point in our lives, we may be asked to assist in the caregiving of a loved one. The caregiving could be related to anything from Alzheimer's to HIV. Family caregiving statistics tell us that virtually one half of the U.S. population has a chronic condition and that most of them rely on family for assistance. Current estimates suggest that there are more than 25 million family caregivers in America. Folks with HIV may need a family or friend to provide their caregiving needs if their health begins to decline. The need of a family or friend caregiver could be due to community resources being unavailable (lack of resources, too expensive) or because the person with HIV feels uncomfortable with a stranger taking care of them. The caregiver role could require the caregiver to administer medicines, transport the person to their medical appointment, cook meals, provide assistance with bathing, dressing, etc.

Sometimes HIV caregivers can be seen as "guilty by association" and are forced to share the same stigma of rejection, loss of friends and harassment that the person living with HIV might experience. Due to this demanding role, caregivers could begin to experience feelings of guilt, anger, depression or despair. Historically, part of the caregiver's role is to be aware of the needs of the loved one, but I wonder if the caregiver is ever aware of his or her own needs. It is important that you honor, value and love yourself during this time.

I ran across the National Family Caregivers Association website and it provided ten tips for family caregivers. Here is a list of helpful suggestions that they offered:

  1. Choose to take charge of your life, and don't let your loved one's illness or disability always take center stage.

  2. Remember to be good to yourself. Love, honor and value yourself. You're doing a very hard job and you deserve some quality time, just for you.

  3. Watch out for signs of depression, and don't delay in getting professional help when you need it.

  4. When people offer to help, accept the offer and suggest specific things that they can do.

  5. Educate yourself about your loved one's condition. Information is empowering. (Sign up for Operation: Survive!, 404-874-7926)

  6. There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.

  7. Trust your instincts. Most of the time they'll lead you in the right direction.

  8. Grieve for your losses, and then allow yourself to dream new dreams.

  9. Stand up for your rights as a caregiver and a citizen. (Attend one of ASP's Advocacy meetings)

  10. Seek support from other caregivers. There is great strength in knowing you are not alone. Join a local support group for caregivers.

I have provided a list of some local and national resources. My hope is that I have provided you with a place that you can go and share with others who are traveling on the same road.


Support Groups in the Atlanta Area


National Resources




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