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

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.

‘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. 

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.” 

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.” 

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. 

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.”