Jacqueline McFarquhar’s mom, Beryline Hillaire, is 80 years old and has Alzheimer’s. For the last two years, Hillaire's been going to Active Day, an adult day care center near Cincinnati, Ohio.
"Six days a week, and that was her choice," McFarquhar said, laughing. "I think she felt like she became a little bit popular there, you know?"
But when the pandemic hit Ohio, McFarquhar pulled Hillaire out of the program to protect her from COVID-19. Then, Gov. Mike DeWine ordered centers like Active Day, which help care for people with dementia or disabilities, to close officially on March 23.
"From that point until now I can see a decrease in her memory, in just everything," McFarquhar said. "She’s more confused, she cries a lot more."
Hillaire is not the only one struggling with the changes: McFarquhar started working from her mother's house so she could take care of her around the clock. Juggling both her job and caretaking has proven challenging.
"The stuff that the center used to do, like the breakfast, and the lunch, and her medication, and stuff like that, I am solely responsible for that," McFarquhar said. "And you do what you have to do, but it’s a lot."
Adult day care centers can finally open their doors again, six months after they were shuttered. They're among the last facilities permitted to reopen in Ohio, and operators and families alike say they’ve been suffering because of it.
In an emailed statement, the Ohio Department of Aging said the delay in reopening was because the centers are group settings, and because “participants in these programs are at higher risk for complications from the virus.”
"For years, nationally, adult day services continue to be left behind, and when it is picked up it’s generally thrown in with the same protocols for nursing homes and assisted livings, which are significantly different," said Bill Zagorski of the National Adult Day Services Association.
Neighboring states like Illinois, Indiana, and Kentucky allowed adult day care services to open before Ohio did.
While Ohio isn’t the last state to reopen these services, Howard Snyder – who runs Active Day adult day care centers across the country – said there were very few resources available in the state to help them stay afloat.
"Some states said, 'Hey you’re closed, but you’re a critical part of the safety net, you keep people out of higher cost settings, you keep people healthy, and we need to make sure this safety net business survives,' and they provided grant funding or retainer payments," Snyder said.
Ohio did not do that, and as a result, Active Day is permanently closing one of two centers in Ohio, and is delaying the reopening of the other.
"It doesn’t make sense for us to open," Snyder said "All we’re going to do is lose more money being open than we are now not being open. Because of the limited capacity, because of the testing requirements."
The Ohio Department of Aging requires adult day centers to test all staff and participants to reopen, in addition to repeat testing at least once every other week. The state is also requiring operators to remain at limited capacity, and to have personal protective equipment for participants and staff.
All of that is difficult for centers who have been closed for months while still paying bills.
"We’ve just kind of drained what we had as far as resources," said Dean Washington, an adult day care provider in Columbus, Ohio. "So we’re right at the edge. It was a good time to open back up because we’ve been hanging on by a thread."
Washington and his family have run Washington Adult Day Care for two decades. He said it is still unclear how exactly the reopening requirements like testing will be carried out, and what help the state will offer to make them happen. Still, Washington Adult Day Care is open again.
"It’s just like going to war," Washington said. "You’re going to have casualties. How many do you want to accept?"
Washington says he worries about the future: for his business, for his staff, and for the people who have come to rely on his program.
This story was produced by Side Effects Public Media, a news collaborative covering public health.