AARP Making a Difference: Caregiver Finds Community in AARP Discussion Group

Our AARP caregiving content, including the Facebook caregivers discussion group, is available to everyone — not just AARP members. 

For Lynch, the Facebook discussion group has been a lifeline. When she felt overwhelmed by caregiving demands and her father’s constant requests, group members urged her to ask herself whether a particular need was critical. 

“They would give advice like ‘If your dad is sitting in a chair and he’s comfortable watching TV, but he wants that drink, is it really important for you to put down what you’re doing?’” Lynch says. “They would help guide you to see things in a healthier perspective.”

The group also offered Lynch practical advice. They suggested activating the child safety locks in her car and having her father sit in the back to prevent him from trying to open the door while she was driving. 

She learned to write lists of questions to ask at doctor’s appointments and how to get 16 hours of home health aide help from the U.S. Department of Veterans Affairs. When Lynch was struggling this summer to get her father’s pain under control, group members suggested she look into palliative care and walked her through the paperwork. “I had been doing caregiving for a while before I joined the AARP group,” she says, “but I still learned so much.”

Paying it forward

What sets the AARP Facebook group apart, Lynch and other members say, is the care and support members offer each other.

The AARP Facebook caregiving group abides by 10 rules, including “Be kind and courteous.” Other rules serve to prevent divisiveness by asking members to agree not to discuss religion or politics or sell products.

The site is managed by real people, including three administrators, two of whom are also moderators.  Goyer and social worker Jane Lincoln participate in discussions and handle the occasional misunderstanding. “I reach out to people personally, and I think they appreciate that,” says Goyer, who checks the Facebook group first thing in the morning and last thing at night. She hears from people who say they appreciate the safe space to share their caregiving problems with others who understand. 

Goyer often shares stories from her own caregiving journey, and she does Facebook Live events with expert guests who weigh in on managing a loved one's estates or how to help someone who resists care. She’ll also write what she calls “teaser posts” asking a mix of caregiving questions (such as “What advice would you give new caregivers?”) and fun questions (such as “What’s one thing you’re looking forward to?”). 

These posts both strengthen the community and help people get to know each other beyond their roles as caregivers, Goyer says.

The bonds forged while sharing their experiences on Facebook are so strong that members often stay in the group after their loved one dies in order to continue supporting others, Goyer says. That’s been true for Lynch. In September, her father passed away at age 86. Now the AARP Family Caregivers Discussion Group is there to help her as she grieves for her father as well as for her to help others. “It's such a fulfilling, energizing feeling to think that you've helped someone the way someone else helped you. It's like paying it forward, she says

At the moment, Lynch is advising someone who is finding it a challenge to take care of her stepmother. When a fellow caregiver has been able to use advice from Lynch or other members, “you can feel it in their words that they’ve [gotten over] a hurdle that they otherwise couldn’t have,” says Lynch.  

And Lynch still relies on the group’s counsel. Having neglected her own health while caring for her father, she’s finally scheduled treatment for skin cancer and an eye surgery. Other members who’ve had the same surgery reassured her that they’ve had positive outcomes.

When you’re a caregiver, says Lynch, you’re so caught up helping your loved one that you’re really just existing in survival mode. Having a group that knows exactly what you’re going through is vital, she says: “I'll repeat it till the day I die. That group was a lifeline for me.”