Even before the coronavirus, caregiving had become Sade Dozan’s every day.
About a year and a half ago, her parents moved close by to help Dozan, 30, and her husband, Michael, with their infant daughter in New Jersey. But soon after, her 69-year-old mother suffered a major cardiac arrest and, as she was recovering, was hit with a cancer diagnosis. Over the course of a year, Dozan said, “My daughter went from having a grandmother that was there to watch her and support her, to me being a full-time caregiver for both my daughter and my mother.”
She’s one of 11 million Americans, according to a 2019 study from nonprofit Caring Across Generations, in the so-called “sandwich generation” of caregivers: those responsible for tending after an adult family member because of health concerns or disabilities while also raising children at home. These caregivers are younger, with an average age of 41, and more diverse than caregivers without children in the home. And over the past few weeks, coronavirus concerns have triggered for them a new cascade of, as Dozan puts it, “impossible choices.”
Dozan had been helping her mother take showers, go to the bathroom and acclimate to her wheelchair — but, worried that she could be an asymptomatic carrier of the virus, Dozan felt she had to suspend their in-person interactions. Dozan also asked her daughter’s part-time nanny to stay home (but kept paying her, as she cares for her own at-risk family member). Dozan’s father, 75, has a “host of health conditions” himself, so Dozan and Michael recently picked up food for her parents, “sprayed down the boxes and left them at the doorstop.” She’s been doing Zoom calls with her father and her mother’s care team to decide whether it’s worth the risk for physical therapists or nurses to come to their house. They had to determine, also over Zoom, whether complications after her mother’s recent surgery were severe enough to hazard an X-ray at a hospital admitting patients with coronavirus.
It’s a suffocating predicament, even though Dozan says she’s lucky to have an employer (a nonprofit that, fittingly, advocates for caregiving infrastructure) that gets it, that allows her to work from home and take leave when she needs it. Still, between her children and her parents, half her income is going to caregiving.
That’s not unusual: American caregivers spend about $7,000 annually out of their own pockets, and those who live an hour or more away from those they care for spend over $12,000 annually. Millennials in particular spend 27 percent of their annual income on caregiving expenses.
The burden is particularly heavy for people of color, like Dozan and her family, as well as low-income communities in terms of access, isolation, income insecurity, unsafe food and housing. “There are not enough sustainable systems in place to cover that in general,” Dozan said. “So during this crisis … [caregivers] have been pressed and squeezed beyond emotionally and financially.”
During less perilous times, one of the greatest difficulties in caregiving remotely was the risk of self-neglect, including lack of hygiene, not eating enough, or living in unsanitary conditions. Studies in Chicago showed that 9 to 10 percent of men and 7.5 to 8.5 percent of women over age 65 demonstrated signs of self-neglect — and this was long before the isolation of sheltering in place.
You can’t sense self-neglect by phone, says Amy Miller, founder of Minnesota-based organization Our Family Encounters, which helps families navigate care management through video conferencing. Miller underscores the importance of video calls now to spot issues “which might only be seen by looking at how mom is caring for herself and her home as seen in the background.”
For those with loved ones in care facilities under lockdown, the lack of contact makes a nerve-racking time feel even more perilous.
“Many adult children are feeling helpless now because they are, to a degree,” said Liz O’Donnell, founder of the online caregiver community Working Daughter. “The truth is we don’t have any control over aging or illness in normal circumstances.”
What adult children can control now is how they show up for their parents: staying in touch with their professional caregivers, asking for regularly scheduled calls, and framing social distancing as a way your older relatives can do their part to flatten the curve (and not trying to scold or worry stubborn parents into doing so, because that won’t work, says O’Donnell).
Some who live close enough have been populating the Internet with bittersweet photos at the windows of nursing care facilities, calling from the parking lot up to the balcony. One arborist in Youngstown, Ohio, managed (atop a bucket truck boom) to visit the outside of his mother’s third-story window.
But many care facilities, such as those where Laura Woerner’s father and grandmother live, have asked people to stop trying to visit. Too many weren’t following social distancing rules.
Woerner, 47, lives outside Philadelphia, and before the pandemic, she would travel two or three times a week to Annapolis, Md., to help care for her 80-year-old father, who is in assisted living, and her 99-year-old grandmother, who lives in an independent-living apartment in a retirement community. Woerner’s children, ages 12 and 14, are now continuing school from home, and Woerner is making care packages of homemade cards, printed photos of the grandkids, and some of her father and grandmother’s favorite items that they can’t get in their facilities. Zoom is too complicated for them, so they talk on the phone.
The first two weeks without seeing them were the hardest. Woerner realized it had been four years since she’d previously gone that long. But, much like the stages of grief, she allowed herself to be sad for a few days before accepting that “the sooner we all do all of the things that they’re asking us to do, the sooner I can see them again.”
She catches herself: “One of them, I may never see again.”
Woerner’s father had just entered hospice when the coronavirus crisis started in earnest in the U.S. Fortunately, his condition hasn’t worsened in the last month, but he’s also “super susceptible to anything.” Still, she won’t let herself become consumed by that fear. “I can only focus on when we come out of it and seeing them again,” she said.
If anything good is to come of all this, Woerner hopes it’s that this moment raises “the profile of what these health-care workers do for us in these facilities.” They are paid so little, are our lifeline to our loved ones. She hopes they feel valued and as a society, we begin to recognize what they bring to the lives of family members we love, even when we can’t be with them. Especially then.
Dozan said she finds the sudden interest in and appreciation for caregivers interesting. “Caregivers, family caregivers, have always been on the front line,” she said.
Dozan is juggling little moments of anger, indignation, hope and frustration. She wants to see universal family care, federal packages that look at the whole scope of what we need, that treat both those doing the caretaking and those receiving it with value and dignity. “My parents deserve care. No one is disposable,” she said, and as caregiving is a collective responsibility, “it needs a collective solution.”
Until one arrives, the struggle goes on. Recently, her mom texted her about needing deodorant and water. With her compromised immune system, she requires filtered water to drink, and her home filter had broken. Buying one right now will cost Dozan $60 plus shipping, for delivery in an estimated two weeks.
One way or another, she’s going to have to figure it out. Her mom can’t go without it.