If caring for a loved one leaves you frustrated and angry at times, that's normal — but you don't have to go it alone.
A good caregiver support group can be a lifeline, providing a place — in person, on the phone or online — to share feelings confidentially, make new friends, get help navigating the health care system and learn from others who have walked a similar path.
The benefits of joining one are well documented: "Decades of research show that social support helps people cope," says psychologist Barry J. Jacobs, coauthor with Julia L. Mayer of AARP Meditations for Caregivers. "Caregivers often can't speak openly with family members about their emotional reactions, and a support group provides a relative degree of anonymity."
They're run by businesses for their employees, faith institutions, medical centers, disease associations, adult day-care centers and local social service agencies, among other organizations. Some are for people caring for loved ones with specific medical conditions, while others are more generally focused.
Different kinds of support groups to consider
Condition-specific groups. These include groups for people caring for loved ones with ALS or Lou Gehrig's disease; Alzheimer's and dementia; cancer; diabetes; fibromyalgia and chronic pain; heart and stroke conditions; multiple sclerosis and muscular dystrophy.
Groups targeting different kinds of caregivers. They might bring together people in specific caregiving situations/relationships, such as those caring for a spouse or partner, or adult children caring for elderly parents. Other groups are for millennials, men, Spanish speakers and more.
Peer-led support groups. The Well Spouse Association, with about 30 support groups around the country, was founded 25 years ago when caregivers often felt invisible, says Dorothy Saunders, association copresident, a caregiver for 40 years and a support group leader. "We've been in their shoes, and we can share. Someone may be thinking, 'I'm really losing my patience. I'm always at his beck and call.' That's normal," Saunders says.
Groups led by a trained facilitator. The facilitator could be a social worker, clergy person or psychologist who helps keep the discussion on track and stop one person from monopolizing the conversation. They also should be able to steer participants toward useful educational programs with elder law or legal aid attorneys, adult day-care providers and other professionals.
Online and telephone caregiver groups. These groups can offer priceless support to people who can't travel to a face-to-face meeting, or need to talk to someone during off-hours. (The middle of the night can be a vulnerable time for many people; the Caregiver Action Network's Internet Forum and other online resources are often at their busiest between 2 and 3 a.m.)
Support groups for young caregivers. These serve an often-overlooked subset of the family caregiver population, people under the age of 18. (There are more than you may suspect: About 1,100 middle and high school students caring for ill, elderly or disabled family members participate in the Caregiving Youth Project in Palm Beach County, Fla., for example.)
Tips for finding one that fits
Get out of your comfort zone. Caregiver support groups are underutilized, often because people think they don't have the time or feel self-conscious about speaking about personal subjects with strangers. As Jacobs puts it, "There are a lot of introverts in this world." Try to push yourself through your resistance and take the plunge.
Check out eldercare.gov and other key resources. At eldercare.gov, you can use the Eldercare Locator (type in your ZIP code) to find your local Office on Aging and other resources or search for caregiver services. The Alzheimer's Association and CancerCare websites also offer support group information.
Find out what the format is. Does the group have a facilitator? Some groups have a trained leader, others don't. You may prefer one over the other. And ask about the group's confidentiality policy. You'll want one that follows Las Vegas-style rules: What's said in the group stays in the group.
Know that most groups are free to join. "I would be wary if a fee is being charged," says John Schall, chief executive officer of Caregiver Action Network, a national organization working to improve the lives of the nation's 90 million family caregivers. Some, though, may ask you to join their association and pay dues. That's the case with the nonprofit Well Spouse Association, but Saunders says they don't turn away anyone who can't pay. (Note that you typically don't need to belong to a church or synagogue or have been treated in a medical center to join a caregiver support group there. Call first if you're concerned, but most likely they'll welcome you with open arms.)
Don't feel obligated to stay with a group if it doesn't feel right for you. "Try out different groups," says Ashley Chapman Kenneth, chair of the Virginia Caregiver Coalition, a grassroots network of 200 groups. "Every group is different, and every caregiver is different."
Keep an open mind. Especially if you don't have many options in your area, don't dismiss a support group just because it's not perfectly targeted to you. Give it a try. About 80 percent of caregiving challenges are similar — including emotional stress, navigating the health care system and juggling medications — regardless of the medical condition or other factors, so a well-run general caregiver group may meet your needs just fine.
The important thing is to find a space where you can share stories, feelings and advice with people who can relate, without judgment. Knowing that you are not alone can make a world of difference.
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