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Online Groups Help Family Caregivers Relieve Stress, Recharge, Learn and Give Back

Fifteen thousand members strong, AARP’s online discussion helps ease the isolation many caregivers experience

spinner image speech bubbles hover above adults as they message back and forth on mobile devices.
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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.

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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.

The Facebook page has become a place where a true community can find whatever support needs. The site is also a place to post about grief and loss — those posts tend to get a high level of engagement. When my own mother began actively dying in January, the site became a place where I would share updates and photos with others. I needed somewhere to put my emotions with others who understood.

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‘Nothing short of oxygen’

The first time Marianne Boyce Parker, 67, from Quincy, Illinois, posted in the AARP Caregiving Group, she was in a moment of crisis. “I was scared, and thought I was losing my mind and didn’t know why,” she says. She can still recall how that first 4 a.m. post received a flood of comments she describes as “nothing short of oxygen to one gasping for breath.”

Her caregiving journey began in 2019 when her family got a phone call from a Florida hospital, asking if they had a brother. John Boyce, who was one year older than Marianne, had suffered a stroke that had left him with advanced dementia. He didn’t know who or where he was, and the family was told that he would require round-the-clock care and supervision for the rest of his life. 

spinner image marianne boyce parker plays a small tabletop football game with her brother john boyce
Marianne Boyce Parker with her brother, John Boyce: “[I was] always looking for ways to engage and often coming up short, so was thrilled when I brought this game and he enjoyed it.”
Courtesy Marianne Boyce Parker

“It all happened so fast,” Parker recalls, and while she hadn’t spent long stretches of time with John in the past 40 years, she remembers feeling a profound sense of empathy for him and chose to take on the responsibility of being his caregiver. She admits she had no idea how she was going to do it or where to begin, but she felt “a passionate conviction to see to it that this gentle man be treated with the utmost care, respect, patience and love.”

Parker says that one of the many benefits of the online group is the knowledge shared by those who have “been there, done that.” Whether it’s offering tips on finding the best doctor, dealing with family discord or choosing the best product for cleaning up “accidents,” she views the AARP Caregiving Group as a virtual encyclopedia of experience and knowledge. 

“At first, the hardest part was the near-unbearable mental and emotional weight of being responsible for the safety and well-being of another adult human being,” says Parker. The support group served as both an educational resource and an emotional outlet, a place of comfort and guidance. “The group helped me to adopt the mantra ‘I got this,’ ” she recalls. 

The group helped alleviate her feelings of isolation — an almost universal issue for caregivers. “I truly do not know what I would have done without the group,” says Parker. “It was a haven I went to at the end of my day. Whether I interacted or not, I received the priceless gift of validation and encouragement from a reputable and admirable group of people. It was equally gratifying when I felt confident enough in my own experience to offer comfort and advice to my fellow caregivers.” 

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After months of caring for her brother in her home, it was time for Parker to move him to a nearby memory care facility, where she visited him daily. Boyce passed away in 2022.

“Caring for my brother was undoubtedly the most difficult and most painful of my life’s challenges to date. It was also the most meaningful, joyful and profound time that I feel honored to have experienced,” she says, adding that she will “forever be grateful for everyone who took an overwhelmed sister and helped her to care for her brother in a way that preserved his dignity and made him feel loved.” 

spinner image mary ann lightfoot in two photos on the left with her husband jim and another of her playing the bass guitar at home
Mary Ann Lightfoot and her husband, Jim, on their 58th anniversary. Mary Ann took up bass guitar at 75, with Jim offering encouragement and accompanying her, to help "feel the joy of life again."
Courtesy Mary Ann Lightfoot

Juggling care for multiple family members

In addition to working full-time as a licensed social worker, Mary Ann Lightfoot, 82, of Pittsburgh, has been a full-time caregiver for five different people over 31 years. When her parents began to fail, she became their primary caregiver until they passed in 1998 and 1999. During that time, her husband, James Lightfoot, 86, who had put his diabetes on the back burner for years, hit the crisis stage and needed intermittent emergency care. 

More Communities That Care

While the AARP Group welcomes all caregivers, there are also online groups that provide diagnosis-specific support. Some to explore:

  • Alzheimer’s Association: AlzConnected. A free online community for those with dementia and their caregivers.
  • Parkinson’s Foundation: PD Conversations. A place to ask questions, get support.
  • CancerCare: Support Groups. Virtual support groups for those living with cancer and their loved ones, led by oncologists and social workers.

Lightfoot’s own health took a turn for the worse. In 2007, a failed knee surgery put her in a nursing home for more than two months as she continued to care for James, who was showing early signs of memory issues. A year later, just eight weeks after her second knee surgery, their youngest son, Mark, 37, a veteran and a police officer, was diagnosed with cancer.

“I’d gone through a period of burnout and losing myself to caregiving,” says Lightfoot, looking back at the hectic time, during which she was also diagnosed with breast cancer. Thankfully, she notes, around 2021, she found the AARP Facebook Group, which she describes as a vital resource for family caregivers, who take on backbreaking work, often alone and without vacation or a paycheck.

“We are often invisible in our culture, although AARP is doing much to make us visible and provide a place where we can discuss issues and problems,” Lightfoot says. “A member may only want to vent or ask for advice,” she says of the active group.

“Others offer information on resources or products for caregiving. Some members never post, others are regulars. No question is too stupid,” she says, calling the site a safe space. “In this group, I learn, contribute and encourage hope, which is a staple in life for me. Hope is essential to overcome loss.”

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