Over the course of an hour, I watched six older men seated around a conference table kid one another, laugh uproariously and then cry together. These caregivers explained to me that this was the one place in the world where they could feel understood and supported when they share their troubles about caring for wives with dementia. At the end of the meeting, they gripped one another's hands tightly, saying "Have a great month," and then lingered by the senior center's entry, kidding and laughing some more.
This was the best caregiver support group I ever visited, epitomizing the potential of this often recommended form of caregiver aid. (Other good ones I've attended include local Alzheimer's Association groups and Well Spouse Association meetings.)
Just as the research on such support groups suggests, these men — meeting monthly for several years, with the facilitation of a geriatric case manager — had developed a trusting, convivial rapport that increased their sense of social support and decreased the likelihood that any one of them felt alone and depressed.
They could talk "shop" — comparing notes on their wives' cognitive deficits, sharing strategies for managing difficult behaviors and mastering insurance forms, and complaining together about crowded medical offices and tardy home health aides.
They validated one another's experiences and even their negative feelings. When one man said he felt guilty for responding with irritation to his confused wife, the other men nodded their heads, saying they'd all also struggled with the same ambivalent feelings. I was sure they were more resilient caregivers for having participated in this group.
Of the thousands of caregiver support groups in this country, run by churches, senior centers, hospitals and disease-specific organizations, too few fully achieve this potential. Due to poor attendance, they are as likely to be filled with awkward silence as with laughter. A friend of mine caring for her disabled mother told me that she was the only person to show up recently at a senior center's caregiver support group. When she decided instead to start her own support group for adult children of aging parents at our synagogue, she was disappointed that only she, the rabbi and the rabbi's secretary came to the initial meeting.
What prevents more caregiver support groups from succeeding? It has to do, in part, with the reluctance of the caregivers themselves. Here are some typical caregiver reactions to referrals to caregiver support groups and possible ways of seeing things differently.
"I don't feel comfortable talking in groups." This is true for the many who are introverted among us. But there's no requirement for group members to pour out their hearts. Many people benefit simply from listening to other people's stories and perspectives, and from learning new approaches to their own caregiving situations.
"I'm doing fine. I don't need support." Even when this is true for a caregiver at a given instance in time, it doesn't mean that it will remain true as caregiving goes on for months and years. Support groups give caregivers ideas for sustaining themselves in order to continue coping well. But sometimes the very idea of accepting "support" makes caregivers concerned that others will judge them to be struggling. For these caregivers, it may be more appealing to attend "caregiver education groups," at which an invited speaker presents a topic of interest, such as stress management or dealing with Medicare. In those groups there are typically discussions among attendees after the presentation, through which caregivers still gain support.
"How can I get to a support group when I'm so busy taking care of my loved one?" Many agencies try to overcome this objection by providing simultaneous caregiver and care-recipient support groups or activities in different rooms. Another increasingly popular solution is for caregivers to become involved in online support groups from the comfort of their own homes at times of greater convenience to them. Research has found that online groups provide the same positive effects as in-person groups when it comes to emotional support and validation, if not the same opportunities for local networking and face-to-face contact.
Regardless of the venue, all family caregivers can benefit from talking with others in similar situations. These opportunities offer them crucial ways to make meaning of their caregiver experiences, share hard-earned wisdom and root one another on. To find either in-person or online groups, you can call your local Area Agency on Agency (find contact information at eldercare.gov) or the AARP Caregiving Support Line (877-333-5885).
Dr. Barry J. Jacobs, a member of AARP's Caregiving Advisory Panel, is a clinical psychologist and family therapist. He is the author of the book The Emotional Survival Guide for Caregivers — Looking After Yourself and Your Family While Helping an Aging Parent.
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