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:
- Choose to take charge of your life, and don't let your loved one's illness or disability always take center stage.
- 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.
- Watch out for signs of depression, and don't delay in getting professional help when you need it.
- When people offer to help, accept the offer and suggest specific things that they can do.
- Educate yourself about your loved one's condition. Information is empowering. (Sign up for Operation: Survive!, 404-874-7926)
- There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.
- Trust your instincts. Most of the time they'll lead you in the right direction.
- Grieve for your losses, and then allow yourself to dream new dreams.
- Stand up for your rights as a caregiver and a citizen. (Attend one of ASP's Advocacy meetings)
- 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
- HIV Caregivers Support Group
Free, confidential group.
1st and 3rd Sunday of every month; 5:00-6:30 p.m. in the Pastors Study at Holly Innocence Church, 805 Mt. Vernon Highway, Atlanta, Georgia
Contact: David Shew, 404-377-6206.
Call before first time attending.
- Our Common Welfare
HIV caregivers group, Decatur, Georgia.
Ask for Prentice or Faye for time, place and date.
- Absolutely Positive
Every Tuesday at 6:30-8:00 p.m.
Call before first time attending: 770-642-6646.
- Positive Impact
Infected/affected support group.
Every Thursday 7:00-9:00 p.m. (open group).
Call before first time attending: 404-885-9040.
- AID Gwinnett: Friends and Family Group
Open group, Lawrenceville.
Third Tuesday, 7:30-9:00 p.m., 725 Scenic Highway, Lawrenceville, Georgia.
Contact: Tracy Upton if you have questions.
- Empowering Caregivers
This web page has an online newsletter and journal-writing section.
- The AIDS Caregiver's Handbook
Ted Edison (editor).
- National Family Caregivers Association
Newsletter (quarterly), card program, referral bank for resources in your community, advocacy.
- Shadow Cliff Retreat
Weekend retreat for people living with HIV/AIDS and their caregivers. Located in Grand Lake, Colorado. Retreat includes dorm style housing, meals, workshops, hiking and a boat trip. This is a great opportunity for those in need of mental, physical and spiritual rejuvenation.
2000 Retreat dates are: July 21-23, 2000 and September 15-17, 2000.
Contact Rene Bourque: 303-733-7305; email: firstname.lastname@example.org.
Cost: $30.00 for persons who are HIV+; $70.00 for caregivers.