En español | Lois was grateful for the calls she received from her neighbors, church members and the hospital care managers to see how she was managing with her husband with dementia now that they were sheltering in place in their small apartment. But it also bothered her a little. She knew everyone was trying to be helpful, but she didn't always want help. It didn't feel good to be on the receiving end of care all the time because others assumed, since she was a dementia caregiver, she needed their concern.
Her children and grandchildren knew better. To them, Lois was the opinionated, commanding lady who was most comfortable telling them and others what to do. At 76, she had spent a lifetime running small businesses and community organizations and still regarded herself as supremely capable. If anything, she wanted to give care during the national crisis, not receive it. That's what most appealed to her sense of self-importance and made her feel best.
It's a long-observed truism that people engaged in family caregiving often don't identify themselves as family caregivers, and even if they do, they shrink from accepting assistance from anyone else. Receiving help can trigger guilt in a family caregiver, as if they are somehow shirking duties that are theirs and theirs alone. To help these family caregivers, it turns out that a paradoxical approach other clinicians and I have used works: Don't offer to help, but ask them for help instead.
The potential benefits of this approach are supported by the research of Stephanie L. Brown, a social psychologist at the Renaissance School of Medicine at Stony Brook University, who studies the impact of being altruistic. The gist of her findings: Helping others can enhance our health. In a 2018 research article, she and her colleagues found that family caregiving, a form of altruism, has a “stress-buffering” effect that may decrease caregivers’ negative health consequences from the caregiving they do and actually allow them to live longer.
For those caregivers who have a driving need to help others, the current pandemic may in fact prove to be an opportunity, not just a threat and a hardship. With that in mind, how can we help caregivers find meaningful ways to give more care, especially to other family caregivers, during this time? Here are some ideas:
Create check-in call trees
Checking in on the status of a caregiver is usually a one-way process: I call you weekly or monthly to see how you're doing. You say fine. I hang up the phone, feeling self-satisfied. But you might hang up feeling anywhere from warmly heartened to mildly irritated, depending on your personality and needs. A better, more interdependent system might be to set up a phone tree in which neighbors, family members or family caregivers have preassigned roles to call one another regularly to check in. This is a multi-way, communal process: I call you, you call the next person on the list, and so forth. No one hogs the glory of being the “helper,” and no one feels the unwanted spotlight of being the “helped.” Everyone stays in touch to help one another. All feel uplifted.
Transform “support groups” to “share and care groups"
When professionals and family members recommend that family caregivers attend caregiver support groups, many of them reject that well-meaning suggestion out of hand as if the need to go to a group for “support” would reveal them to be emotionally weak. (In fact, high-functioning caregiver support groups are about mutual support.) A better way to entice the reluctant Loises of the caregiving world is to rebrand those support groups as “share and care groups” in which reciprocity is advertised by the name: I share my experiences and stresses. You share yours. We care for one another. All are simultaneously helpers and the helped.
Encourage them to write what they know
Over time, family caregivers learn. They master medical terms, transfer techniques and soothing skills. It is often very meaningful to them to share that hard-won expertise by writing about what they know for others still learning. The most enterprising write full-length memoirs of their caregiving journeys. Others post their experiences, tips and ideas on websites, such as the AARP Caregiver Online Community, or Facebook caregiver groups, such as the AARP Family Caregivers Discussion Group. These online outlets often provide caregivers with rapid feedback from readers about how helpful their ideas are, as well as useful pointers from other caregiving veterans who have the same burning desire to be of help.
The need to help others is not nearly as well recognized as the need for help. Through this period of increased uncertainty and isolation, we can revise how we relate to caregivers and play to their strength: that remarkable desire to serve.
Barry J. Jacobs, a clinical psychologist, family therapist and healthcare consultant, is the co-author of Love and Meaning After 50: The 10 Challenges to Great Relationships — and How to Overcome Them and AARP Meditations for Caregivers (Da Capo, 2016). Follow him on Twitter and Facebook.