After I unexpectedly became a caregiver to my husband at age 46 when he was injured by a roadside bomb in Iraq, I often thought about how the role was the exact opposite of being a new parent. There was no upside to any of the exhaustion, loneliness, isolation and fear, no understanding that the sleep deprivation and anxiety would be the price of watching a child grow and thrive with the joy of each new milestone.
The only hope I had as a caregiver was that, over time, my husband would begin to improve. More than anything, I craved a community — people who had walked this road before and could reassure me, cheer me on and tell me everything I was feeling was normal. I needed people around me with whom I could let my hair down and be myself.
Fast-forward 10 years, and social media has allowed a kind of connectivity that many of us could not have imagined. Platforms like Facebook erased the geographic barriers of community and allowed people to find commonality, without leaving home, something incredibly convenient for so many in caregiving situations.
A ‘tribe’ for caregivers
In 2019, the AARP Family Caregivers Discussion Group was created on Facebook as a place where people could share, advise, connect and meet one another wherever they were. AARP caregiving expert Amy Goyer is the group moderator, and she remembers when AARP first asked her to take on the role. “Dad had died less than a year earlier, and I was still trying to figure out life after caregiving,” says Goyer. “At first, I wasn’t sure if people would join the group and talk about such personal issues online, but I was excited to try. It gave me something new to focus on — a way to help other caregivers. I’ve been thrilled with the response!”
Tips for Participating in an Online Discussion Group
To join the AARP Family Caregivers Discussion Group, go to Facebook and request membership . (It’s free, of course, and requires only answering one question and agreeing to group rules.) Remember: This is a private group, and followers of your regular Facebook feed cannot see your posts unless they are a member of the group too.
- Post as much or as little as you like. Many group members post almost every day; others never post and instead just read, listen and learn.
- While the group thrives on a positive, supportive energy, it’s absolutely fine to complain, vent or air frustrations about your caregiving situation.
- Share your joys and triumphs; your fellow caregivers need to hear about the positive things too!
- Participate in the Facebook live chats Amy Goyer holds every month. They cover a wide variety of caregiving topics, and all are archived in the “Featured” tab on the group page.
Goyer is a familiar voice and face to the group, constantly reaching out, guiding members, and posting questions that engage and connect. Her advice is drawn from her nearly 40 years of experience working in the field of aging along with just as many years of caregiving for her grandparents, parents, sisters, and other family and friends.
“It’s been amazing to be interacting with some of the same group members for four years and watch them gain confidence over time and then jump in and help a fellow caregiver with advice or tips,” she says. “I think many group members feel like they’ve found their ‘tribe.’ ”
Goyer has also witnessed many wonderful and positive things. “Interactions run the gamut, from providing emotional release and encouragement for those who are feeling depleted, to crowdsourcing to solve caregiving problems, to creating new connections with others who ‘get it.’ ” The group is private, so interested members must make a simple request to join. That means group members feel safe sharing their frustrations or even venting. “Just connecting with someone and feeling heard can be a great stress reliever,” she says.
Goyer oversees the posts and interactions of 15,000-plus members as well as creating conversation starters, which are popular in the group. Recently, a woman asked for help placing her deceased mother’s six cats. At first, Goyer grappled with whether or not that belonged on the page, but she finally decided it represented a very real caregiving issue. “When others jumped in to respond, it really demonstrated how the group has evolved to be a supportive and helping environment,” she says, adding that the group helped find homes for two of the cats.