Providing Support for Family Caregivers

Providing care for parents can be one of the most difficult transitions for people. Navigating that journey can be stressful, which is why it helps to have a solid support system to ease the burden.

Pathlights, an organization dedicated to senior care services across the United States, has hosted caregiver support groups each month, primarily serving spouses. However, after noticing a need for support among children who care for their parents, Pathlights created a new group.

“It can be a different story for their children,” said Catherine Stowers, senior director of programs at Pathlights. “Sons and daughters have a unique experience in caregiving and that experience shapes their perspective. When we had the opportunity to host a third group, we wanted to be a bit more intentional about whom it would serve. That’s why we formed the Sons and Daughters Caregiver Support Group.”

In the U.S., about 24.1 million adult children are caring for a parent, an increase of 32% since 2011, according to Johns Hopkins. This can begin as informal caregiving such as picking up a few groceries, doing a load of laundry or attending a doctor’s appointment and become more complex and time-consuming as the parent or parents age. Georgetown University found that adult children caregivers provide an average of 421 unpaid hours of care each year. Caregiving research and support often focuses on spouses, but for older adults—especially those living with dementia or other memory loss—adult children can be among their primary caregivers.

“When we work with spouses, partnership and mutual caregiving are embedded in the relationship,” Stowers said. “But that’s not always the case with a child. You were the one once cared for by your parents, and now you find yourself caring for them. Adult children are typically balancing multiple roles because they are usually still working, and they might have kids of their own. While every caregiving experience is complex, child caregivers often navigate a unique set of responsibilities that must be woven into their lives.”

Along with the role reversal that comes with caring for a parent, children often confront very different emotional, practical and strategic challenges. Stowers said the Sons and Daughters Group is building a safe, welcoming space where these challenges are discussed openly and honestly, with participants connecting compassionately and sharing as much or as little as they feel comfortable.

“When you’re caregiving, you just feel like you’re alone in it,” said Stowers. “You can feel so isolated, like you’re the only one going through it. So, when you can meet others that can resonate with you, that’s really important. In this group, when you say, ‘Oh my gosh, my sister does nothing and it frustrates me,’ and then hear someone else say, ‘Oh my gosh, my brother doesn’t do anything either,’ there is real power in that—in combatting that feeling of isolation.”

Additionally, sometimes caregivers themselves seek out resources for help. If the need for care is great, it can impact the caregiving child’s ability to work. Many caregivers, especially women, quit their jobs or shift to part-time or consulting work, reducing their income and changing their own retirement future. AARP reported that the average family caregiver spends about 26% of their own income to cover caregiving expenses. Nearly half have reduced their own retirement savings.

Stowers said Pathlights can direct caregivers to, and help them apply for, cost-saving programs such as the Supplemental Nutrition Assistance Program, provide State Health Insurance Assistance Program counseling for Medicare supplements and Medicaid, and arrange for home-delivered meals and in-home services when eligible.

Stowers recommended that sons and daughters attend support groups as soon as they self-identify as a caregiver.

“Your parent doesn’t have to be living with you to attend,” Stowers said. “As soon as you realize you’re caregiving—and that’s usually a lot later than when you actually begin providing care—you should attend. Even if you’re just stopping by mom’s twice a week, you can experience burnout and issues with setting boundaries and realistic expectations for what you can do. Everyone’s capacity is different.”

Stowers encourages those who feel they may not be ready to talk about their experience yet to attend and observe, as it may help them to just listen.