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The shrug, the scrunched-up nose, the eye roll — these are a few of the negative reactions I've seen when I recommend support groups to family caregivers. Some tell me outright that they don't like hearing others' sob stories. Others claim shyness and discomfort speaking in groups. Almost all tell me they don't have the time. As a result, many caregiver support groups — meeting periodically in church basements, hospital conference rooms, and nursing home dining areas with eager leaders and ample refreshments — have too few participants.
This is a shame. We know from decades of research and anecdotal evidence that finding social support is one of the best ways caregivers can cope better over time. It's the rare person who thrives in this arduous role when isolated from others. Those who feel misunderstood or underappreciated by family members may find special comfort among like-minded comrades.
In AARP Meditations for Caregivers, the new book I coauthored with psychologist Julia L. Mayer, we tell the stories of several caregivers who — to avoid further pestering from relatives and professionals — reluctantly attended local support groups and then happily became regular members. They ultimately realized what made the experience so beneficial.
Venting and validating: The core purpose of these meetings is to help caregivers feel heard, understood and cared for. That happens when the groups have clear ground rules for mutual courtesy, respect and acceptance, which allows caregivers to safely express whatever is in their minds and hearts about caregiving. You may find that having the chance to vent is what's most helpful to you. Or you may look to the group members' feedback to validate your emotional reactions — including through laughter, when your frustrations or anecdotes strike a chord (laughter is a wonderful tension reliever). Be prepared to listen attentively to others' stories and root for them, as well.
Sharing and comparing: At many group gatherings, caregivers talk shop, offering useful information and opinions about hospitals and physicians, medications and treatments, home health agencies and equipment manufacturers. You can ask for specific advice from the other group members, and consider telling them details about your caregiving story and practical knowledge that might be helpful.
Uniting and advocating: Caregivers become absorbed in daily routines and forget that others face similar struggles. It can be a relief to hear your fellow caregivers' experiences and learn that you are not alone. You will also become more aware that many aspects of caregiving — such as underfunding for research and treatments, negligent family members, balky insurers — are patently unfair. Support group members can feel camaraderie and power when they work together to try to right these wrongs. Organize your group to walk to raise money for Alzheimer's, Parkinson's or other diseases; write letters to insurers urging them to pay for experimental drugs; or call legislative offices to advocate for more governmental support of basic research.
Finding community: We find support and identity through our affiliations with small groups — be they stamp-collecting clubs, bowling teams or church choirs. Caregivers, too, need a sense of belonging. This can come from family members who work shoulder-to-shoulder with you on your caregiving team. But it's also often helpful to speak with a more objective audience. The best groups — those that offer compassion, advice, humor and understanding — produce committed members. Embrace them.