QUINCY — Spending plenty of time with her dad was part of the weekly, and sometimes daily, routine for Julie Lewis.
“I was used to seeing him all the time,” the Ursa woman said.
Then COVID-19 changed the routine.
State regulations shut down in-person visits with her dad, Vernon Tippett, at Cedarhurst of Quincy, but Lewis still wanted to find a way to continue helping both Tippett, her father-in-law, Larry Lewis, at Good Samaritan Home, and other residents of long-term care facilities.
“We need to take into consideration the mental, emotional well-being of the people who are in these facilities and the emotional well-being of the person that was involved with that resident before COVID hit,” Lewis said. “It’s hard on us as caregivers of our loved ones not to be able to be there for them. It’s just been heartbreaking for me and him.”
Lewis joined a Facebook group called Caregivers for Compromise, offering “a common voice for our loved ones in long-term care facilities who are dying from isolation” and working for “a safe and reasonable reopening” of the facilities.
The Illinois group is part of a national effort spearheaded by Mary Daniel, a Florida woman whose husband is in a memory care facility. When COVID-19 shut down her daily visits, Daniel took on a part-time job at the facility to be able to see her husband — generating national attention for her story — and founded Caregivers for Compromise to find a better way for people to maintain contact with loved ones in long-term care.
“We have residents cut off, going on eight months, from most contact with their families. Before, families could come in, they could touch, they could see each other, but now it’s phone calls through the window or distanced 6 feet apart,” said Stephen Maxwell, who works as a long-term care resident-directed advocate in West-Central Illinois with Alternatives for the Older Adult Inc.
“Our group is not saying there shouldn’t be restrictions ... with protecting the most vulnerable. We’re not asking for the facilities to be a wide-open revolving door of visitors,” Lewis said. “All we’re trying to do is get each resident to be able to have an essential person that’s been in their life to be able to continue to be in their life.”
Known as essential caregivers, the people designated by residents would be able to continue to visit, and provide care, as they did before COVID-19.
Other states — including Minnesota, Indiana, Florida, Texas and Missouri — have adopted legislation or established programs allowing primary caregivers to maintain contact with loved ones provided safety standards are met.
State Sen. Jil Tracy, who has heard from Lewis and other area residents concerned about lack of contact with loved ones in long-term care facilities, hopes to introduce a similar measure in Illinois.
“This type of thing is not a political issue. It’s a need that’s out there,” Tracy said. “I’m going to do what I can to bring it forward. I think we’ll have some help from other legislators and see how it goes.”
Maxwell calls the essential caregiver program a potential win-win for both short-staffed long-term care facilities and residents.
“You’re going to have family members who can come in and help be there for their loved ones and help maybe get a glass of water when their loved one needs it and give them that socialization that’s been missing,” Maxwell said. “It will help relieve the staff a little bit and help the residents.”
And with the program calling for essential caregivers to go through the same COVID screenings as staff, “it hopefully shouldn’t be any more of a risk than the staff going into nursing homes,” Maxwell said.
The essential caregiver program provides “a permanent, long-term solution so this could never happen again,” said Carrie Leljedal, a New Baden woman with a 32-year-old son in a long-term care facility and spokesperson for the Illinois Caregivers for Compromise group.
“What we’ve asked for is if anybody moves into a long-term care facility, they will always have the right to designate two people that will be their essential caregivers that will have full access regardless of what is going on in the environment around us,” she said. “The biggest part of what essential caregivers can do, besides the personal connection for the resident, is it’s bringing another set of eyes into every facility.”
That’s important, Leljedal said, and not just during COVID-19.
Lewis and Leljedal were among Caregivers for Compromise members invited last month to share their stories in a meeting with Illinois Department of Public Health officials.
“We felt like we were heard,” Lewis said. “They told us at the end of the call that they were working on an essential caregiver program, so that’s hopeful.”
More information about Caregivers for Compromise is available online at caregivers4compromise.com. Both the national group and Illinois Caregivers for Compromise also have Facebook pages.