During COVID-19, a Catch-22 for grandfamilies

Barbara Johnson has rarely left home in the past three months, due to the COVID-19 pandemic. The 71-year old retired math teacher and guidance counselor from Edmond, Okla., has a rare blood disorder and Type 2 diabetes, putting her at high risk of complications should she get sick. But it's difficult for her to remain completely isolated while also caring for three teenage grandchildren — twin 18-year-old boys and a 17-year-old granddaughter, all of whom are on the autism spectrum.

"I was in the hospital in 2016 and put on a ventilator," she said. "The kids see these things about COVID on the news and are afraid it'll happen to me again." One of her grandsons often comes into her room in the middle of the night to make sure she's still breathing.

Johnson is one of the estimated 2.6 million grandparents or other kinship caregivers raising children in what are sometimes called grandfamilies. It's a challenge even in the best of times, but the COVID-19 pandemic has placed additional stress and burden on these families.

Unlike many grandparents who remain apart from their grandchildren for safety's sake, kinship caregivers have a unique role which makes social distancing impossible, according to Amy Goyer, AARP's national family and caregiving expert. "They're grateful they actually get to see their grandkids, but they're cognizant of the risk and they're scared for their own health. What if something happens to me and I get COVID? What's going to happen with my grandchild?"

The majority (63%) of grandparent caregivers nationally are under 60 and work outside the home, according to the advocacy organization Generations United. Some have been laid off from their jobs and must squeak by on minimal unemployment. Others may be essential workers who must find alternative child care now that many summer programs and camps are shut down. Many fear becoming ill themselves and being unable to care for the children.

Johnson runs a support group in the northeast part of Oklahoma City for other grandparents raising grandchildren. Many in her group face serious struggles obtaining food, getting medical care and paying their bills.

"They do not have a grocery store, the only one they had closed down," she says.

The nearest store is about five miles away. Volunteers from the neighborhood used to drive them, but many were older themselves and had to stop. Although there's city bus service available, many of these grandparents are afraid to take public transit because they have pre-existing health conditions. Food banks help, but that can mean standing in long lines, and food may run out before it's their turn.

"It's been pretty hard on them," Johnson says. They're often not taking care of their own needs, either. "They're afraid to go to the clinic, because of the virus," Johnson adds.

Additional financial assistance may be inaccessible, because many social service agencies as well as courts, which approve guardianship, fostering and adoption, have been closed. "Everything is in limbo for these folks right now," says Johnson.

About one-fifth of grandparent caregivers (21%) live at or below the poverty level, according to Generations United. The group's National Center on Grandfamilies works to enact policies and promote programs to help grandfamilies address financial and other challenges.

"During this pandemic, adults over 60 and with compromised immune systems are asked to isolate themselves and not have contact with children or young people and that's not possible for our grandfamilies who can't take a break from each other," says Jaia Petersen Lent, the organization's deputy executive director.

"Often these kids have special needs, or have a history of trauma," Lent explains. "They had support at school like counseling or occupational therapy, and suddenly all of that went away, and now it's just down to grandma."

Meanwhile, many grandparents are coping with their own underlying health issues while trying to figure out how to pay rent and how to get enough food on the table each day.

"These caregivers are the last stop for the children before they enter foster care," says Lent. Advocates should be talking with them, reaching out, helping them plan and think through their entire family system, including what would happen to the children if they became ill, she notes.

Another twist is that younger grandparents may also be taking care of older relatives in addition to their grandchildren.

"It's a huge emotional and psychological pressure, being stuck at home, trying to make those difficult decisions about what risks to take for themselves and their family," says Goyer, who moderates a Family Caregivers Discussion Group on Facebook. "So, they're even more concerned for those who are even older than they are."

"Grandfamilies are the silent heroes. When people are thinking about older adults who are at higher risk, they're not realizing that these folks have two layers of complications and caring," says Goyer.

Fortunately, there is help available online.

AARP Community Connections offers a list of mutual aid groups that can assist with many tasks for at-risk older adults, or even just connect with a friendly phone call. Generations United offers state-by-state fact sheets which direct grandparent caregivers to available support services. The Eldercare Locator (1-800-677-1116) is another resource which can point grandfamilies to local assistance.

Neighbors and friends can reach out, too. Offer to pick up groceries or medications, or just lend a friendly ear.

Supporting these grandparents is critical, according to Goyer. "The last thing we need is more kids in the foster system or on the streets," she says.