For family of nursing home residents, 2020 is time they will never get back

The fight for Carolyn Augst’s life started weeks before she tested positive for COVID-19.

Her facility, St. Elizabeth Healthcare in Delphi, had been spared by the virus for the first five months of the pandemic. But Augst's daughter, Vickie Ayres, could see that the isolation was taking a toll.

For thousands of Hoosiers like Ayres, the pandemic has produced an unbearable separation that has kept family members from providing essential care and visitation to nursing home residents. They've watched as a temporary safety measure enacted in March has stretched into a semi-permanent policy that raises questions about the rights of nursing home residents and their quality of life.

IndyStar's nursing home investigation: Here are five takeaways from over a year of reporting.

The risks are real. Long-term care residents are especially susceptible to the virus, which spreads quickly in congregate settings. But keeping family out of the facilities has not kept the virus out. As of Dec. 9, 484 of Indiana's 534 nursing homes, and an additional 154 assisted living facilities, have had at least one resident case of COVID-19. More than 3,500 nursing home residents have died.

But even more have suffered as a result of isolation. A nursing home expert who analyzed data for the Associated Press estimated that for every two COVID-19 deaths in long-term care, an additional premature death could be attributed to other causes. That would add an additional 1,700 Hoosiers to Indiana's toll.

"What I am angry about (that) I think is unconscionable is that a short-term protocol for a health crisis stole months of the end of her life from her and her family," Ayres said. "It deprives people of the right to choose what they want, at the end of their life."

'Heartbreaking and alarming'

In normal times, family members provide essential care to nursing home residents. They help maintain residents' social and mental well being, help with eating and hygiene, and are often the first to observe signs of abuse or neglect. But for several months this year, families have been shut out, even as nursing homes have struggled to adequately staff their facilities.

Messages about declining loved ones have poured in from across the country, said Richard Mollot, Executive Director of the Longterm Care Community Coalition. Stories about family members losing weight, wearing the wrong clothes or losing the ability to walk or use the bathroom by themselves.

IndyStar has also found instances where staffing shortages during the pandemic endangered nursing home residents: an increase in falls, call lights going unanswered, residents who were not being bathed regularly.

"It's just heartbreaking and alarming," Mollot said.

Mollot said that since the beginning of the pandemic federal regulators have taken a "hand-holding" approach to nursing homes, loosening several regulations and significantly reducing the types of violations that trigger inspections. One such change eliminated training requirements for nursing assistants in an attempt to alleviate staffing challenges.

So while families have been denied access to their loved ones, untrained nursing assistants and, lately, members of the National Guard have been let in. That dichotomy irks Kyle Niederpruem, who with Ayres helps moderate a Facebook group for Hoosiers with family members in nursing homes.

It's not lost on Niederpruem that, even with visitation restrictions, the coronavirus has devastated long-term care facilities. More than 50% of COVID-19 deaths in the state are linked to the facilities, even though residents make up less than 1% of the population.

Staff are the main vectors of the virus, and many often work in low-wage jobs at multiple facilities. One study by the National Bureau of Economic Research suggested that facilities could have reduced infections by 44% if they'd limited such cross contamination.

"A lot of these things are things to make it sound like it's working," she said. "but it's not really."

A complicated process

Throughout the pandemic, Ayres tried to keep in contact with her mother. She tried the window visits, talking to her mother via a cell phone, but the process sometimes confused Augst.

At first, St. Elizabeth didn't tell her about the visitation. Her mother was still in isolation after a positive COVID test, which Ayres believes was a false positive. Two subsequent tests came back negative, but the facility put Augst in isolation anyway. For more than two weeks, her only human contact was with the nursing home staff.

A representative for Trilogy Health Services, which manages the facility on behalf of Witham Health Services, said the company could not comment on individual residents out of privacy concerns.

Ayres was able to become an essential caregiver, a designation that allows family member to provide care in the facility for up to two hours every day. But whether or not to designate essential caregivers or let them in is completely at the discretion of the facility administrators. With more than 700 long-term care facilities in the state, there's little consistency related to the program, Niederpruem said. And there's no appeals process in the event caregivers feel they were unjustly shut out.

"You don't find these things out until you start going down the rabbit hole, and you realize you've hit another wall, and another wall and another wall," Niederpruem said.

In response to questions from IndyStar, state health department spokeswoman Jeni O'Malley said that Indiana was among the first states to offer outdoor visitation earlier this year, and was the first state to offer an essential caregiver program. The state has also created a family outreach team to respond to all complaints from families being denied visitation.

Throughout the summer and fall, the state has updated its guidance regularly to align with federal requirements. Facilities are now required to allow some type of visitation, and must allow family in for end-of-life circumstances, even if there is a COVID-19 case in the facility.

Lost time

In the week that Ayres was allowed to see her mother, she could see Augst's mood and health improve. But just as quickly as she had walked through that door, it was slammed shut again.

In early August, a staff member brought in the virus. It spread like wildfire. Soon, 33 employees and 38 residents had tested positive. By the time Ayres was finally able to pull her mother out of the facility, Augst had caught the virus. She died on August 26.

If Ayres had been able to visit her mother earlier, she doesn't know if the outcome would be different. Maybe her mother would have been stronger. Maybe she would have survived the virus.

What Ayres does know is that the last months of her mother's life were lonely, and that she will never get that time back with her.

"It's really important for me to say that I'm not so much angry that my mom got COVID and that she passed away. That is just what happened," Ayres said. "What I am angry about ... is that a short-term protocol for a health crisis stole months of the end of her life from her and her family."

"And that's the problem."

Emily Hopkins is a data reporter for IndyStar's investigative team. Reach them at 317-444-6409 or emily.hopkins@indystar.com.

This article originally appeared on Indianapolis Star: For family of nursing home residents, 2020 is time they will never get back

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