Stage 2, Section 3: Support Groups

Joining a support group is one of the best things you can do for yourself as a caregiver, truly a way to know that you are not alone. Participants in support groups often say that being part of a support group saved their lives and sanity. Sometimes group members enjoy social outings together and are almost like an extended family. Even if you have never considered yourself a joiner, attending a support group can make a huge difference in the quality of your life. Don’t wait until you become a “burned out” caregiver. Start looking for a group fairly early in your caregiving experience. If you are thrust into heavy-duty caregiving by a stroke or accident, look for a support group right away.

Caregivers tell us that it takes several visits to get a feel for whether a group is a good fit. The first time you may feel overwhelmed with the thought of what might be ahead for you and your care receiver. The second time you might hear a guest speaker or caregiver stories that seem less scary, or you may be more ready for a support group then. If you don’t feel comfortable after several visits, try a different group. Don’t give up on the idea of support groups – different groups have different styles. Most support groups do not charge for services.

What to Expect

If there is a contact person listed for a specific group, it is helpful to call before visiting so that you will know what to expect. Ask questions like these:

  • Is this group oriented toward a specific disease, toward caregivers of elderly parents or of spouses, or is it a general group for caregivers of all types?
  • Do you have caregivers alone, caregivers and care receivers together, or respite care for the care receivers while caregivers meet?
  • Have most people who attend been with the group a long time or do you have a mixture of new and old caregivers?
  • What kind of topics do guest speakers cover?
  • When do you meet, and do you have social outings at other times?
  • Who leads the group, and what is that person’s experience?

Some support groups meet at adult day care centers or a nursing homes, but that does not mean that your care receiver needs to attend that center or be a resident in that home. These groups may be Alzheimer’s/dementia oriented or may serve all types of caregivers, and some have the additional benefit of free respite care for care receivers while their caregivers attend the group.

At caregiver support groups, you have an opportunity to talk about your situation if you want to, but you don’t have to talk. You can sit and listen, share feelings and tears you might not be comfortable sharing with non-caregiving family and friends, learn tips from other caregivers or from guest speakers, laugh, hear about research on your care receiver’s illness, obtain guidance on where to get additional help, and much more. You can be honest and know that you won’t be judged, since many people in the group will have had similar experiences. Often caregivers remain in support groups after their care receivers move to a nursing home or die because the group helps with their grieving process and they have something to offer caregivers who are at earlier stages of caregiving.

How to Find Support Groups

  • National organizations for various diseases can be called toll-free. See the list of “Toll-Free Information Lines” in More Resources and Tips. Often, they can give you local contact information for support groups associated with their national organization.
  • The St. Petersburg Times runs a support group listing the last Sunday of every month in the neighborhood section of the paper: Neighborhood Times in St. Petersburg and Clearwater Times; Largo Times, and North Pinellas Times in those areas. If you know someone who runs a support group that is not listed, have them call the the St. Petersburg Times Listings Coordinator to add their group.
  • Call the telephone number 211 which lists community resources for people of all ages including many but not all local support groups in Florida’s Pinellas and Pasco Counties. The 211 database also includes organizations associated with research and assistance to families affected by diseases and conditions. Alzheimer’s disease, arthritis, diabetes, multiple sclerosis, Lou Gehrig’s disease, cancer, stroke, lupus, Parkinson’s disease, lung diseases, HIV/Aids, mental health problems, alcoholism, hepatitis, fibromyalgia, hearing loss, and blindness are among the choices. You may also inquire about “Counseling”, a service shown to be helpful to caregivers in caring for themselves. For Pinellas, visit the 211 Tampa Bay web sit; search by the Keyword “Support Groups”. Scan the whole support group section, since few caregiver support groups have caregiver in the name; many have the name of a specific disease.
  • Alzheimer’s Association Florida Gulf Coast can provide an updated list of affiliated support groups in your area. To find out about Alzheimer’s support groups in west central Florida, call the Alzheimer’s Association, Gulf Coast Chapter. The Chapter headquarters can be reached at 727-578-2558 in Pinellas County. Their Helpline (1-800-272-3900) is available toll-free 24 hours a day, 7 days a week. You may visit their web site to find support group meetings and other caregiver events and resources. The Alzheimer’s Association offers a program for care partners and people with the disease called BASE (Beginning Alzheimer’s Support and Education program). The mission of the Beginning Alzheimer’s Support and Education (BASE) program is to provide education, resources, skill-building tools and support to individuals who are directly or indirectly affected by early-stage Alzheimer’s disease and related dementia’s.The national Alzheimer’s Association web site has a chapter finder for caregivers in other areas.
  • Some caregiver web sites offer online support groups and other support such as chat rooms, classes, and places where messages and tips can be exchanged. Alzheimer’s Caregiver Support Online provides free Positive Caregiving Classes. This site is a project of the Florida Department of Elder Affairs and the University of Florida. Caregiving.com offers seven different support groups to help caregivers who are new, providing hands-on care, male, young adult, alternative (gay/lesbian), transitioning to facility care, or experiencing grief/loss.