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‘Nobody knew how to handle this situation’: How COVID-19 decimated Illinois nursing homes, exposed government flaws and left families in frustrating limbo

At a two-story nursing home in Willowbrook, close to the front entrance, is a resident’s room where crystal ornaments of birds and butterflies adorn the window.

It’s where 93-year-old Joan Keith nearly died gasping for air — and later tested positive for COVID-19.

It’s where she watched ambulances evacuate dying neighbors from Chateau Nursing and Rehabilitation Center.

And it’s where the former beautician has been largely confined since then, feeling a mix of emotions: missing her family, grateful to be alive, yet leery of venturing beyond her door frame.

“If I go in the hall, there’s people — they have the mask on and everything — but I don’t know if they’re carrying anything,” she said, “and I don’t want to be ill again.”

That uneasiness is felt in long-term care facilities across the state, places where COVID-19 has taken a particularly staggering toll with no clear end in sight.

Six months into the pandemic, the new virus has infected more than 28,000 Illinois long-term care residents and killed more than 4,000. It’s also fueled debate over the Illinois Department of Public Health’s oversight of a mostly for-profit industry. That includes how the agency cut back inspections, at times breaking state law, as the virus raced through facilities.

Although far fewer residents are testing positive now than in the spring, no radical medical breakthroughs are yet in sight. The arrival of fall brings fear of a deadly virus resurgence, continued struggles over testing and protective gear, and restrictions that — in an effort to protect residents — rob them of life’s small joys, from hugging relatives to sharing a meal.

Some families are left with heartbreak.

Ann Obregon’s family made the 81-year-old a plaque with her grandchildren’s names. But they couldn’t deliver it to her Niles nursing home before she became one of nearly 50 residents and workers there to die of the coronavirus.

Even now, two months after her death, her son, Jose Obregon, struggles to understand what happened.

“It was new to them,” he said. "It was new to us.”

On March 9, Gov. J.B. Pritzker led a packed Loop news conference held to announce Illinois had become the 14th state to issue a coronavirus disaster proclamation.

By then, it had been eight weeks since Illinois’ first-known COVID-19 case. State officials stressed that they thought the spread had been limited but they were taking proactive steps. One step was to ask nursing homes to begin limiting visitors and screening workers for symptoms.

Pritzker’s public health director, Dr. Ngozi Ezike, said they wanted to “make sure that we are not walking in viruses into a setting — a very tight and close setting — with a very, very vulnerable population.”

But in a nursing homes 20 miles southwest, the virus had already arrived.

That same day of the news conference, at Chateau in Willowbrook, a 67-year-old resident began to have a fever and cough. Breathing poorly, she was taken to the hospital, where a coronavirus test came back positive on March 13. Within days, five of her neighbors in the 127-resident nursing home also tested positive in the hospital.

Joan Keith, 93, is a resident of Chateau Nursing and Rehabilitation Center in Willowbrook, the region's first long-term care facility to have a resident test positive for the coronavirus. Keith contracted the virus and was sick in February.

Joan Keith, 93, is a resident of Chateau Nursing and Rehabilitation Center in Willowbrook, the region's first long-term care facility to have a resident test positive for the coronavirus. Keith contracted the virus and was sick in February. (Family photo)

Researchers would later conclude the virus had likely been spread “well before” the first case was identified. And that may be showcased by Keith’s experience. She and her daughter, Terry Campbell, said Keith was sick in February with a fever and trouble breathing, and tested negative for the flu. She had nearly recovered by mid-March when the facility tested every resident for COVID-19 and hers came back positive.

In the worst of her sickness, Keith recalled wanting to die: “I’ve had many illnesses, many surgeries, everything else, and nothing like this.”

COVID-19′s emergence in an Illinois nursing home was something collectively feared for months.

Advocates for seniors had long complained that nursing homes were too often short-staffed and scrimped on critical care while regulators did little to stop it. The industry had long countered that care was adequate despite overregulation and meager government funding.

In the middle were public health officials. For decades they’d seen facilities evolve from “old folks homes” to ones giving more complex health care to increasingly younger and more frail residents. And they saw those facilities struggle at times to contain less-publicized infections.

In that context, federal, state and local officials descended on Chateau’s two-story, winged building.

Officials tried to reassure the public, saying they were prepared. Privately, emails released later to the Tribune revealed an early bureaucratic struggle as county and state officials debated whose job it was to find enough nonquarantined workers to run Chateau.

Another sign of confusion: Who should wear masks? This was well before experts had concluded everyone should wear them if possible. The man who oversees Chateau’s management, Ron Nunziato, said his staff wore masks anyway — including to a meeting, until they were told otherwise.

"Various people from different departments of government came in and said, ‘Why are you people wearing masks? Are you sick?’” Nunziato recalled, adding: “We were told to take them off.”

But for all the early confusion, public health officials took a bold step, sending in a 12-person team to test nearly all residents and many staffers at Chateau. The team quickly discovered what’s now become common knowledge: Many people carried the virus without showing any symptoms.

Of the 27 additional residents who tested positive, roughly half showed no symptoms, according to a study later published. That was also true of staffers testing positive.

The results showed that screening based on symptoms alone wouldn’t catch many cases. So widespread testing was key.

But it would be among the many goals that — to this day — have yet to be fully realized amid a climbing death toll.

Soon after Chateau’s outbreak, news of others began to emerge, as did key issues about how to fight the pandemic.

The state complained the federal government had failed to secure testing supplies and protective gear, forcing a mad scramble among bidders for what little was left to buy.

Pritzker announced an ambitious plan to test all workers at least once, but the effort didn’t reach many facilities. Later, some states ordered all their facilities to begin regular testing, but Pritzker didn’t, instead telling facilities to come up with their own plans.

In the meantime, the virus tore through places such as Symphony of Joliet, where more than 20 people had died by mid-April. The facility said one was a maintenance worker who, before showing symptoms, set up dining tables in many residents’ rooms, likely becoming a “super spreader” before the virus killed him.

A prominent workers union began complaining that its members were stuck on the front lines without adequate protective equipment — forcing some workers to find or make their own gear, as best they could.

On her last shift at a Bolingbrook nursing home before falling ill, nurse Krist Angielen Guzman posted a photo April 23, 2020, on Facebook that showed her in protective gear. She wrote, “These are the days of our lives” and included hashtags that said “proud nurse” and “praying for my patients.” Guzman, a 35-year-old mother of three from Bolingbrook, died days later of COVID-19.

On her last shift at a Bolingbrook nursing home before falling ill, nurse Krist Angielen Guzman posted a photo April 23, 2020, on Facebook that showed her in protective gear. She wrote, “These are the days of our lives” and included hashtags that said “proud nurse” and “praying for my patients.” Guzman, a 35-year-old mother of three from Bolingbrook, died days later of COVID-19. (Krist Angielen Guzman)

One was Krist Angielen Guzman. Her family told the Tribune that the mother of three at times made her own masks and bought her own goggles for her job at a Bolingbrook facility. She died of COVID-19 nine days after her last shift, at age 35.

Public health officials scrambled to update directives as more was learned about the virus. Gear shortages forced new rules on how to use equipment longer. And there was the sheer challenge of regularly contacting nursing homes to push advice and assess conditions.

“With 200 of them (in Cook County), it gets overwhelming very quickly,” said Dr. Demian Christiansen, who heads Cook County’s Communicable Disease Prevention and Control unit.

The number of facilities inspected dropped from roughly 100 or more a week to less than a dozen, according to a Tribune analysis of available state and federal data. When reviews picked up in mid-April, for weeks they were mostly phone calls to facilities, not on-site visits where problems could be spotted.

As the crisis flared, some relatives of nursing home residents pulled them out, including Doreen Hall, who moved her 81-year-old mother, Phyllis Wade, from Chateau to Hall’s Bolingbrook home. Hall said nursing home workers “did the best they can as quickly as they could” but seemed to be scrambling, unable to give out enough information or ensure proper care.

Phyllis Wade, 81, is cared for by her daughter Doreen Hall and great-granddaughter Deaje Hall, left, at their home in Bolingbrook on Sept. 10, 2020.

Phyllis Wade, 81, is cared for by her daughter Doreen Hall and great-granddaughter Deaje Hall, left, at their home in Bolingbrook on Sept. 10, 2020. (Zbigniew Bzdak / Chicago Tribune)

Workers and families began complaining that some facilities kept outbreaks quiet, making only the legally required reports to state and county health officials.

Then those officials, for weeks, contended that a law forbade them from alerting the public to long-term care facilities with outbreaks. Amid an outcry, the Pritzker administration reversed course and began releasing names of homes, along with figures.

The numbers showed a massive spread.

By April 19, roughly a month into the pandemic, the state was reporting 1,860 cases tied to residents and workers at 186 facilities, with 286 deaths.

Within two weeks, cases and deaths roughly quadrupled, to 7,542 cases, with 1,082 deaths.

The virus had inundated facilities in dense urban neighborhoods, such as Elevate Care Chicago North in West Rogers Park, as well as the Chicago region’s farthest edges, such as Bria of Geneva in Kane County.

There, the virus killed nearly a fourth of the residents in less than a month. Resident Debbie Jacobs described what happened to the Aurora Beacon News as quick and overwhelming.

“I don’t understand how anything could have went through a building as fast as this COVID-19 did.”

As the death toll mounted, groups with often starkly different agendas — the nursing home industry, consumer advocates and suburban officials — began openly questioning whether enough was being done for nursing homes by the Illinois Department of Public Health.

This was still early in the pandemic, when much of the fear focused on whether hospitals would overflow. But IDPH said it also had taken aggressive action to guide nursing homes, increase testing there and procure gear for them. Still, officials also said their job wasn’t to bail out a mostly for-profit industry paid to keep their residents safe.

But, to some advocates, the Pritzker administration missed opportunities to hold homes accountable.

* Pritzker issued a temporary order April 1 that made it harder for people to sue nursing homes alleging improper care during the pandemic. The industry argued it was needed to stop frivolous lawsuits. Advocates argued it lessened accountability.

* Pritzker on May 1 also temporarily stopped some state inspections of nursing homes. The order didn’t stop inspections by the U.S. Centers for Medicare & Medicaid (known as CMS). Regardless, government data shows state and federal reviews had largely been stopped by then and did not return to pre-pandemic levels until June.

* Ezike and her top aides forced out two IDPH administrators after learning July 8 that their unit — against state law — stopped investigating abuse and neglect complaints, according to IDPH.

IDPH has hired outsiders to review what happened and suggest improvements. But in a statement, the agency said it never stopped monitoring facilities, including the one that would eventually become the state’s deadliest so far — Niles Nursing & Rehabilitation Center.

The facility — rated above average by CMS — sits between a subdivision and high-voltage electric lines. It’s relatively unique in catering to mostly Korean immigrants. But like many of Illinois’ long-term care facilities, it’s run by a for-profit firm and been cited for disturbing incidents.

That included the facility failing to monitor water quality until a 2018 outbreak of Legionella bacteria killed a resident, and a 2019 fatal fall of another resident left unattended despite a history of falls. Both state citations were spurred from complaint investigations.

Records show CMS inspectors were the first to visit the Niles facility, on April 22.

An SEIU Healthcare steward there, Marie Gongora, recalled to the Tribune that by then workers were short on masks and gowns. Some workers quit, leaving shifts even thinner, while many remaining felt untrained to contain COVID-19.

Gongora, a 27-year certified nursing assistant, said that when the pandemic struck, it seemed like “nobody knew how to handle this situation.”

The facility did not respond to phone calls from the Tribune. In reports sent since mid-May to CMS, the nursing home reported it continually had at least a week’s supply of critical supplies but routinely struggled with low staffing.

Any complaints about low staff, training or gear were not mentioned in CMS’ April inspection report, which noted only one issue: The facility washed and folded clothes in a way that could spread infection, which the facility management said it fixed.

The state said it was monitoring the facility at the time as well. But records show it struggled to even measure the outbreak. Federal officials recorded 31 cases there on April 22. Two days later, the state said it knew of just 12. Such inconsistencies were not unusual, which the state blamed on an overwhelmed system with delayed data.

In a statement, IDPH said it called the Niles home May 4 as part of calls it made to facilities across the state asking about cases, supplies and efforts.

In those days of the pandemic, Gongora, the longtime staffer, recalled workers struggled at times even with the basics — keeping residents clean and dry.

When time allowed, Gongora said, she’d sit and pray with some residents. Every day seemed to reveal more sickness.

“It was a scary thing. … You’d have a patient that’s walking and, the next thing you know, they can’t,” she said. “All of a sudden, their strength is gone, and there’s the COVID.”

Among the dead was Ann Obregon.

Antonio, 16, from left, Mateo, 9, Joey, 13, and their father, Jose Obregon, hold a plaque they made for Jose's mother, Ann, inscribed with each boys' name and "Halmeoni," the Korean word for grandmother, on Sept. 16, 2020, outside their home in Burbank. Ann Obregon died in a hospital after she contracted COVID-19 at Niles Nursing & Rehabilitation Center. The family was unable to visit her to give her the Mother's Day present.

Antonio, 16, from left, Mateo, 9, Joey, 13, and their father, Jose Obregon, hold a plaque they made for Jose's mother, Ann, inscribed with each boys' name and "Halmeoni," the Korean word for grandmother, on Sept. 16, 2020, outside their home in Burbank. Ann Obregon died in a hospital after she contracted COVID-19 at Niles Nursing & Rehabilitation Center. The family was unable to visit her to give her the Mother's Day present. (Erin Hooley / Chicago Tribune)

The 81-year-old Korean immigrant had come to the nursing home less than a year earlier, her son said. She lived in a room with three others. She was hoping to move out, and he was trying to help her, when he got the phone call, on Mother’s Day, that she was sent to the hospital. She died eight days later.

By May 23, the state knew of 135 cases and 24 deaths tied to the facility. Its outbreak was among the top 15 of 1,400 places the state regulates. On that day, the state said, it sent in a team to help test and guide staff, but not do a formal inspection.

On July 7, after the facility’s outbreak had grown to be among the most deadly, IDPH sent inspectors, whose one-paragraph report said they found no problems. But those inspectors apparently missed a problem the facility later acknowledged: not screening workers twice a day for symptoms.

That problem wasn’t uncovered until IDPH inspectors came back July 28. The inspection also found residents and a staffer either without masks or wearing them wrong.

The state said it reviewed documents the facility sent to it and determined Aug. 27 that the problems were fixed, although CMS said it still planned to fine the facility.

By then, the facility had 49 deaths from 210 cases.

Records show on-site inspections occurred well after major outbreaks elsewhere, including:

* The Villa at Windsor Park. The first recorded state interaction was calling the home a month into the pandemic, after 40 cases had emerged. An on-site inspection occurred 7½ weeks later, after 121 more cases had emerged, when inspectors said they found staff and residents not properly wearing masks. The latest toll: 167 cases, with 48 deaths.

* Norridge Gardens. The state first recorded making calls there May 5, after 25 cases had emerged. Inspectors showed up on-site May 28 — after another 41 cases emerged — and found workers not swapping out or cleaning gear as required, and residents not in masks. The latest toll: 167 cases, with 45 deaths.

When asked about the outbreak’s size, a facility spokeswoman said 67 cases and 10 deaths were of people already COVID-19-positive who were accepted into a COVID-19 wing it created to help out hospitals and other nursing homes. She said the facility also is larger, serves sicker people and is in a harder-hit area, likely explaining the bigger numbers.

IDPH, which by law regulates nursing homes, told the Tribune that it limited inspections during the pandemic’s peak to keep inspectors from catching and spreading the virus as they traveled from place to place.

Even when inspections were limited, the agency said it actively engaged facilities as part of a broader effort to provide “ongoing and significant support.” The state said testing has more than tripled since May, with new weekly COVID-19 cases in August at times just a tenth of what they were during the pandemic’s peak.

“The State of Illinois has worked diligently to protect residents and staff in long-term care facilities providing guidance, recommendations, technical assistance, testing, and other support,” according to the statement.

And some advocates agree, saying overworked and underfunded IDPH officials have done the best they could to oversee nursing homes while also assuming the herculean task of being the state’s lead pandemic agency.

“This administration and this department have been extremely committed to protecting the well-being of residents,” said David Olsen, a former state representative who now lobbies for the Alzheimer’s Association.

Others, however, question the state’s efforts. AARP Illinois said the state repeatedly failed to protect residents, be open with the public or accept advocates’ input. The group wants state lawmakers to hold public hearings on what it called “alarming” actions.

“The state has lost its sense of prioritization and responsibility and accountability,” said AARP Illinois’ state director, Bob Gallo. “It sounds like the wagons have been circled, and the drawbridge has been drawn up, and the torch has been blown out of the castle, and let’s pretend they don’t know we’re here.”

Even an industry trade group leader, Pat Comstock, complains the state has seemed to boldly announce initiatives only for efforts to quietly fizzle, which she said was part of a broader failing to better prioritize help for nursing homes.

“There definitely were some flaws in that process,” said Comstock, with the Health Care Council of Illinois. “It’s not too much of a stretch to imagine that some people might just want to blame nursing homes and walk away.”

For the estimated 100,000-plus residents in Illinois long-term care, there remains an uneasy limbo.

Collectively, the weekly case numbers stubbornly linger around 400 to 700 new cases across the state.

And all the tools needed for the COVID-19 fight remain elusive:

* A new federal rule requires nursing home workers be tested regularly. But labs still can take days to process traditional tests. Facilities say they’ve gotten “rapid testing” devices, but they don’t work fast enough to mass-test workers. Quick, effective saliva tests — like the kind used at the University of Illinois — aren’t expected to be ready for nursing homes for months.

* While more plentiful than in the spring, protective gear remains in short supply at times. While CMS does survey facilities weekly, there remains no state effort to better direct supplies to facilities in need.

* Short-staffing and low pay remain universal complaints. While reasons are debated, experts say the problem makes it harder to ensure residents get safe care. In a move praised by the industry, the state for now is allowing facilities to fill holes with new hires with far less training than normally required.

Other issues remain, particularly how to provide the best quality of life in settings that — even before the pandemic — struggled to keep residents active and engaged.

Instead of communal gatherings in dining halls for meals, bingo, crafts or movies, residents have basically been in what can feel like solitary confinement for half a year, family and advocates say.

For Joan Keith, she tries to stay positive.

She compliments Chateau’s food, cleanliness and staff. She said she has plenty of puzzle books to keep her busy, and TV to watch — even if she can’t get the Cubs games this year.

She often calls her daughter twice a day, but she said her biggest loss of the pandemic is seeing family in person. They’ve had three visits, the last one Sept. 1.

Campbell, her daughter, sat outside, facing windows that partially opened in. Keith sat on the other side, in her wheelchair, also in a mask.

They could see each other, although sometimes Keith said she had to crane her neck. Ears were cocked. Phrases were repeated. But at least they were near each other.

At one point, Keith told her daughter: “I just want to hold your hand.”

Campbell’s response: “One of these days, Mom, it’s all going to be better.”

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