Families feel crushing isolation of nursing homes

By Sarah R. Champagne, Texas Tribune

After 70 years of marriage, the coronavirus tore Margie and Werner Stalbaum apart. But Margie, who was positive for COVID-19, wasn’t the one who died. It was Werner, of natural causes — and maybe of loneliness.

In early June, when 87-year-old Margie tested positive for the virus in the Cedar Park nursing home where they lived together, she was transferred to a different facility in nearby Round Rock to be isolated.

When their granddaughter Serena Bumpus visited Werner during that period, she talked to him through a window. Werner, who was 88 years old with dementia, would point at his wife’s empty bed, looking as if he didn’t know what was going on.

“Part of me wonders, and the rest of my family wonders, did he think she had already passed?” said Bumpus, who is a nurse. “And he just thought, ‘It’s time for me to go be with her.’”

The coronavirus pandemic has been a constant and precarious balancing act between limiting the spread of the virus and the need for life to go on. In few places has this balance been more delicate than in long-term care facilities, where elderly and medically fragile residents have been deprived of visits from loved ones for almost five months.

For some families, that wait is ending as the state rolls out new rules to allow visitation again in certain nursing homes and assisted living facilities, but it remains unclear how many facilities can — or will — start allowing visits. And some families say the damage to their loved ones from prolonged isolation has already been done.

As the pandemic reached the U.S. — and began ravaging nursing homes soon after — most states with coronavirus outbreaks closed visitation at long-term care facilities. Recently, some states have begun allowing visitors again as the COVID-19 curve flattened.

In Texas, Gov. Greg Abbott shut down visitation in mid-March. That order remained in effect for 145 days until Aug. 6, when the state eased restrictions for facilities that don’t have any active COVID-19 cases among residents or confirmed cases among staff in the last two weeks.

Of Texas’ 1,215 nursing homes, 56% still had active cases on Thursday while more than 15% of the 2,000 assisted living facilities have reported active infections.

Once a facility determines it can allow visitors, the next step is to get approval from the state if it decides to resume visitation — and that’s up to each facility, Texas Health and Human Services spokesperson Kelli Weldon said in an email. Weldon added that the state doesn’t yet have a list of facilities that have been approved to resume visitation.

It’s up to families to contact the facilities to find out whether they are able to allow limited visitation. Even facilities that meet the requirements cannot allow physical contact between residents and visitors, state officials said.

For many families, this is not acceptable.

“My mom has Alzheimer’s, she is nonverbal,” says Genny Lutzel, whose mother Paula is in an assisted living facility in Rockwall, near Dallas. “Everything in her world is sensory, sensory touch, sensory communication. And we can’t touch.”

COVID-19 has been so devastating in long-term care — with close to 22,000 infections and over 3,100 deaths in Texas since the beginning of the pandemic — that facilities are fearful of allowing any visitors and wary of putting more pressure on their staff, who will have to supervise every minute of the visits, said Jude Goodson, former executive director of Orchard Park at Southfork, an assisted living facility south of Houston.

Goodson said the pandemic has put facilities under tremendous financial pressure because of expenses like protective equipment for staff and technology to keep the residents in touch with their families. Meanwhile, revenues have dropped because of fewer new admissions and more deaths, she said.

“With severe financial issues, where is that extra staff [to manage visitations] going to come from?” Goodson said.

Roadblocks to visits

Abbott’s March order halting visitation didn’t halt the spread of COVID-19 among some of the state’s most at-risk residents. After the governor allowed businesses to gradually reopen in May and June, infections in nursing homes and assisted living facilities soared. In July, more than 11,000 of their residents were infected, and 1,350 died — more than four times the totals for June.

While families were banned from entering the facilities, infected staff members brought the virus to work with them, health experts say. Once inside a facility, it spreads “like a wildfire,” Phil Wilson, the acting executive commissioner for the Texas Health and Human Services Commission, said during a webinar about the new visitation rules on Aug. 7.

The visitation rules are taking effect even as cases in nursing homes and assisted living centers are still growing, with deaths in long-term care facilities still making up for a third of the state’s overall toll. More than 1,100 new cases have been reported over the past week, a 54% drop compared to the last week of July — which saw some of the highest case numbers of the pandemic — but still more than double the weekly average for June.

Under the new rules, in addition to being COVID-free, nursing homes — the hardest hit facilities — will also have to test their staff every week, which has been difficult to achieve because of limited access to testing.

“Testing has been an ongoing challenge,” Kevin Warren, president and CEO of the Texas Health Care Association, which represents long-term care facilities, said last week after the new rules were published. Facilities can perform their own testing, using federal funds allocated for COVID-19, but without that federal money, Warren said it can cost facilities up to $15,000 a week to perform tests.

In July, the state tested all residents and staff in only about 7% of long-term care facilities, either through requests by the facilities or through quick response teams the state deployed after outbreaks were reported. In August, the state plans to test residents at 9% of nursing homes and assisted living facilities.

At the end of July, the federal Centers for Medicare and Medicaid Services started sending devices to nursing homes that can perform antigen tests on-the-spot within minutes; 372 have been allocated so far at Texas’ more than 1,200 nursing homes. Antigen tests are taken by nasal or throat swab like other tests, and while faster, they generate more false negative results than other kind of test.

But the new requirement to test all staff weekly could be a Catch-22 for nursing homes: those with no active case aren’t prioritized to receive those testing devices.

“I don’t see how a nursing facility can test staff weekly without point-of-care testing [with the federally-supplied devices],” said Patty Ducayet, the state’s long-term care ombudsman, adding that she has no evidence that the state is fulfilling the remaining need.

Isolation kills too

Lutzel said she has been visiting her mom through a window since March.

“I know they’re doing everything they can, but there is just no substitute for a family member,” she said.

Scientists have long studied the effect of social interaction on the brain; the pandemic has offered a grim occasion to measure the consequences of the lack of interaction.

Isolation can lead to mental and physical decline, said Dr. Carmel Dyer, professor and executive director of the Consortium on Aging at UTHealth in Houston. Anxiety and depression increase with social isolation.

“One thing that our brains like the most is social interaction,” says Dr. Janice Knebl, professor in geriatrics at the University of North Texas Health Science Center at Fort Worth.

Both said several of their patients in long-term care have shown signs of declining health at a much faster pace than the normal course of aging or dementia.

Leora and Aretha Carter have also noticed the rapid decline of their mom, Willie Mae Carter, who is in Ridgecrest Retirement and Healthcare in Waco, during their weekly through-the-window visits.

“She had dementia but could still recognize us even if it took a minute. Now she won’t even get up out of a chair. I understand she’s 90 years old, but it occurred so quickly,” Leora Carter said.

She had a chance to do an outside visit with her mother in mid-May, but being six feet apart was hard, and the ritual hug to say goodbye was impossible.

Dyer said people with moderate to severe dementia are not always aware of the reasons why their loved ones can’t visit or hug them and might feel abandoned.

The new state rules allow for a “failure to thrive” exception to the visitation ban, which has to be documented and is only allowed at facilities that meet the other requirements.

Under the exception, if a physician diagnoses a decline in a resident’s physical or mental health, one person can be designated to be the sole visitor for that person, and not just in end-of-life situations as has been the case.

“Signs of a failure to thrive include weight loss, decreased appetite, poor nutrition, and inactivity,” reads the new emergency rules for nursing facilities.

For Renee Griggs, the fact that rules are different for different facilities creates “a lot of confusion.”

Her mother suffers from dementia and lives in an assisted living facility called The Grandview of Chisholm Trail in Fort Worth. When she talked to the facility on Friday, they didn’t know if they could or were going to allow visits.

Griggs said her mother has lost 16 pounds since January, and she’s gone from remembering her daughter to being disoriented and incontinent.

“Even though COVID itself is not killing my mom, the consequences of the disease are killing her,” she said.

She picked her mother up last week on Friday for an essential doctor’s appointment. She still has not driven her back to the facility. “I just couldn’t do that,” she said.

The Stalbaum family thinks Werner Stalbaum could be another victim of the virus who never contracted it.

Margie Stalbaum was her husband’s “lifeline,” and putting her in quarantine took away the one person “who kept things familiar,” Bumpus said.

They had never been apart for so long, she added, and Werner’s health declined quickly after his wife was transferred.

Bumpus had a chance to visit her grandfather in his last hours, because of the exception to the visitation ban for compassionate end-of-life care. Bumpus said what she saw still haunts her; in 18 years of nursing, she said she had never seen such a “look of defeat on everyone’s face,” including residents and the staff.

That day, Margie Stalbaum was still waiting for a second test to come back negative so she could be reunited with her husband. She learned through a wrought iron fence, through masks and distance, that the love of her life was gone.

“She could hardly formulate a sentence” after she returned to the Cedar Park facility, Bumpus said, adding that she believes isolation caused her grandmother to become disoriented.

Only at Werner’s funeral did it become clear that Margie didn’t fully grasp what had happened.

“And so when she is rolled up to the casket to say goodbye, she looks at my aunt and says ‘Oh my god, he died,’” Bumpus said.