Denise Hays hopes she will be able to hold her mother's hand this week for the first time since last summer.
Although the Geneva woman lives only a few miles from her mother Judy's memory-care assisted living facility in South Elgin, the COVID-19 pandemic has kept Hays a window pane's distance away from her mom for months.
"My mother was kicked out of her other assisted living home because of her dementia the week we shut down at the beginning of the pandemic," Hays said. "I had to move her into a new place without ever seeing the inside. It was one of the most awful things I've ever had to do in my life."
Except for a few outdoor visits in the summer, Hays and other family members have been able to visit with Judy only by gathering outside her window at the long-term care facility. In order to get close, they have to climb over shrubs.
"I still cry about it sometimes," Hays said. "Especially when I see her and how much in the last year she's gone down physically."
Advocates for residents of long-term care facilities and senior citizens say Hays' experience during the pandemic is not unique. The COVID-19 outbreak pushed operations at many long-term care facilities to their limits. And no other group of people were as affected by the harshest realities of the virus as residents and workers of long-term care facilities and other congregate living settings.
"We've been living with this nightmare for more than a year," said Bob Gallo, AARP Illinois state director. "When I think back, nobody was prepared for a worldwide pandemic when we should have been on more of an alert."
In Illinois alone, state health officials reported 10,197 residents of long-term care facilities have died from the respiratory disease. That's just under half the state's COVID-19 death toll.
There are still nearly 700 open outbreaks at such facilities statewide, including 389 at group residences in suburban Cook, DuPage, Kane, Lake, McHenry and Will counties, according to figures released Tuesday by the Illinois Department of Public Health.
"It was a double whammy of the disease and the havoc it wreaked in nursing homes, added to the fact you now have social isolation for most of these residents," said David Olsen, director of state affairs for the Alzheimer's Association Illinois Chapter. "That was very challenging."
About half of all long-term care residents in the state are Alzheimer's patients or suffer from some type of dementia, Olsen said. Preliminary data indicates the number of deaths of people with these memory diseases was more than 16% above what was anticipated in 2020.
"We believe that's largely due to the pandemic," Olsen said.
IDPH officials would not comment about the effects the pandemic had on the agency's oversight of long-term care facilities and what might change in the future.
IDPH officials note on the state's COVID-19 website that they are following federal guidelines by not issuing citations during the pandemic to long-term care facility operators but rather aiming to "encourage surveyors to ensure violations are remedied quickly and residents are properly cared for."
In August, the state hired an outside agency to assist with investigations of reports and allegations of abuse and neglect that were delayed by the pandemic. A former federal prosecutor has also been hired to oversee IDPH investigations into complaints regarding long-term care facilities during the pandemic.
Julie Hanson, a nurse from Batavia whose mother, Geraldine, died from COVID-19 at a long-term care facility in Arlington Heights, said one problem she noticed at her mother's facility was that health-related decisions were being made by company executives rather than the facility's medical personnel.
"I look at it through the lens of a nurse and I see how it should be working," she said. "But so much was done because it's the way executive leadership in many of these homes wanted it done, and nurses would catch flak from those executives if it wasn't done that way."
Matt Pickering, executive director at the Health Care Council of Illinois, said he hopes declining case rates indicates a pending return to normalcy. He urged lawmakers to increase state funding for long-term care facilities to "ensure they have the resources needed to keep residents safe." The council is a lobbying and advocacy organization for more than 300 nursing facilities in the state.
"The compassionate care our industry provides is vital to the health of our communities, and we strongly urge lawmakers to consider the need for increased funding to help long-term care facilities recover from the pandemic and continue to care for the state's most vulnerable seniors," Pickering said.
But Gallo believes the state has become too reliant on long-term care facilities, resulting in inadequate care to more of those residents. He suggested Medicaid and other federal subsidies be used for more in-home care.
He also believes the pandemic will cause more people to reconsider moving elderly family members into congregate settings.
AARP has lobbied for years to increase state funding for in-home and community-based care that allows more senior citizens to stay in their homes and receive scheduled assistance when needed rather than going into "some type of institutional facility," Gallo said.
AARP has been able to sustain funding levels for these services, but a spending increase would ultimately save the state money since Medicaid funds would be reduced to nursing homes, he said.
"Are nursing homes, the way they operate now, is that what we should be accepting as a society?" Gallo asked. "That has to be an ongoing conversation, not just in Illinois but nationally."
With residents -- and employees -- of long-term care facilities prioritized for COVID-19 vaccines, hospitals throughout the state are reporting fewer patients from nursing homes and assisted living settings, medical experts note. Through Friday, nearly 88% of the 414,900 vaccine doses earmarked for long-term care facilities in Illinois had been administered, according to state records.
"While not everyone in nursing homes has been vaccinated, despite that, the number of cases we're seeing from these types of places has dropped dramatically," said Dr. Jonathan Pinsky, medical director of infection control and prevention at Edward Hospital in Naperville.
At the height of the last surge of cases in November, 13% of the COVID-19 patients at Edward and Elmhurst hospitals came from long-term care facilities. Pinsky said that so far this month, the hospital system has treated 36 patients for COVID-19, and just one of them was a resident of a long-term care facility.
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