She notes that there is a tendency in our country to silo caregivers off into nuclear families. “Therefore, a lot of care takes place behind closed doors,” says Washington. “But if we turn some daylight on those often-private acts of care and begin to talk about them, it benefits everybody.”
An undue burden
Washington exposes the ways in which the health care system takes caregiving for granted, how a disproportionate weight of caregiving falls on women or minimum-wage earners, people of color or marginalized groups. She points out the great irony of how our society frames caregiving as both “priceless and worthless,” a phrase coined by author Evelyn Nakano Glenn in her book Forced to Care.
“People can burn out quickly without support and we need to change the patterns of society if we’re going to build a compassionate and truly caring society,” she argues. “Rethinking caring labor in all forms and providing adequate compensation is a major issue, one that the coronavirus pandemic has brought to national attention with the number of women who have had to drop out of the workforce to care for children or elderly parents.”
Parenting and caring during the isolation of the pandemic has bubbled up healthy discussions around caregiving that have helped people feel less alone. “The pandemic has shown us many things as a culture, but for me it has highlighted the importance of community ties and how much I miss these sustaining networks, from acquaintances at school drop-off to the people you see in the course of the day,” she says. Caregivers have, all along, experienced this kind of isolation, which gives us all a chance to rethink the way we enhance those community ties.
During the two long, intense years Washington spent as her husband’s primary caregiver and now living with his chronic illness and disability, she has seen her role ebb and flow. When I ask her what she would share with the benefit of hindsight, she offers this advice.
Say, ‘Yes!’ “Appreciate and accept the help that is offered, such as rides for kids or meals. If I had to do it over again, I’d accept offers sooner and more gladly than I did.”
Don’t delay seeking support. “I felt like I had to save offers of help for when it got hard, but I wish I’d been more honest with myself and proactive with others about how much support and help I needed early on.”
Get a reality check. “I wish I’d been more mentally prepared for how long the span of acute caregiving would be and how draining and depleting the role would be.”
Outsource what you can. “Lymphoma brought horrible night sweats and our sheets needed changing daily. I was fortunate to be able to pay for a laundry service.”
Find a balance between privacy and openness. “When you do share, unexpected resources and assistance can come out of it. Sometimes after a workout at the community gym I would let down and cry, embarrassing as that was. One day, I shared our story with a woman I didn’t know. It turned out she was in the oncology field, knew a specialist and set Brad up with an appointment. I didn’t love leaving my tears all over the gym floor, but we believe changing oncologists saved Brad’s life.”