Heartache amid outbreak for families of Texas nursing home residents

About half of the residents at a Pflugerville nursing home have tested positive for COVID-19 in recent weeks. But even in the face of the outbreak, some families are urging officials to let them in to care for their loved ones.

"It's some of the most pathetic circumstances you could put someone in right now," said Rachel Finney, whose 90-year-old grandmother is in Pflugerville Health Care Center and has tested negative for the disease. "Having a visit with family and outside safely would do a lot for her state of mind."

Finney is among thousands of Texans who are waiting for the chance to see their loved ones in person inside nursing homes for the first time in six months.

Although state officials started allowing visitors inside facilities in August, the requirements that facility operators had to meet – including testing staff weekly and being COVID-19-free for at least two weeks – were so stringent that fewer than 10% of nursing facilities opened up.

On Thursday, the state cracked the doors to all Texas nursing homes, allowing up to two designated family members per resident to come in at any time to care for their loved ones. While some nursing home resident advocates fear the move would open the floodgates to COVID-19, many family members across the state have said the disease is already spreading, even under lockdown protocols that have prevented family members from entering.

"Their loved ones (inside nursing homes) are already being exposed to people," said Mary Nichols, a North Texas resident and leader of Texas Caregivers for Compromise, a 2,900-member group advocating for family member access into nursing homes. "Plumbers are going in. IT techs are going in. Nursing students are going in. There are so many untested people going in, and here we've got family members willing to be tested, willing to wear personal protective equipment."

A petition asking for family member visitations has garnered more than 25,000 signatures over a three-month period.

'Everybody is on edge'

Finney said her grandmother, who has dementia, has been having a hard time. Prior to the pandemic, most of her socialization came from her son and grandchildren. She had regular outings with her family and would spend major holidays with them.

Since being locked down, her dementia has worsened, recounting events from decades ago as if they had happened yesterday, Finney said.

"One thing I've noticed is that it's getting harder for her to get out of her bed to the wheelchair. She's just not getting out as much now," Finney said. "No activities are happening. No music is happening. Everybody is on edge and scared for their lives. It must be a nightmare."

Finney said she would follow any safety protocols -- including being tested, wearing personal protective equipment and conducting visitations outdoors -- just to be able to see her grandmother beyond glimpses through a glass window.

The recent outbreak at the center has further stripped Finney of contact with her grandmother, moving her into another room away from residents with COVID-19 residents and from her landline phone.

Finney no longer can hand off food to staff members to give to her grandmother.

On Thursday, her grandmother refused to see Finney.

"It's just so disorienting," Finney said. "She doesn't feel good pretty much all the time."

Officials with the nursing home, which is operated by Indiana-based Chosen Healthcare, did not return multiple requests for comment last week.

Pflugerville Health Care Center, which has about 95 residents, according to residents' families, documented 48 resident COVID-19 cases and 10 staff cases on Tuesday. For weeks, the nursing home had only documented three cases, according to the Texas Health and Human Services Commission, which oversees the state's 1,200-plus nursing homes.

The nursing home has seen two deaths from COVID-19, according to the latest data available from Austin Public Health.

The nursing home has been preventing family members from visiting, so it's likely that a staff member infected residents. Texas requires nursing homes to test staffers weekly to allow visitors other than caregivers.

Nursing home and assisted living resident cases in Travis, Williamson, Hays and Bastrop counties have reported 1,438 coronavirus cases combined; 230 of those patients have died, as of Sept. 11, the latest data available from the Texas Health and Human Services Commission.

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They have treated Ivana, who is nonverbal and in a wheelchair, with compassion, have allowed Schnars to video chat with her and have texted Schnars every day with updates on Ivana, Schnars said. The Texas Health and Human Services Commission should be held responsible, she said, because it has been making the decisions on how nursing homes should operate during the pandemic, yet the virus continues to spread inside the facilities.

She said caregivers like herself should have been allowed to enter the facility since the beginning of the pandemic because locking everyone out hasn't kept the disease at bay.

"The most difficult piece is not being able to see her," Schnars said. "I really hold the government responsible, because we are no more at risk of bringing this into a nursing facility than the staff that go home every day."

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Schnars said she has seen a visible change in Ivana's demeanor in the times she has seen her through the window and the one time she took her to a doctor's appointment.

"When I picked her up to take her to the doctor in June, she never opened her eyes. She never smiled. I had the music blaring in the van, and I was like, 'Ivana, we get to be together,' and she never smiled," Schnars said. "She does that when she's angry. She doesn't have the cognition to understand where I am, and I've been her constant for 44 years."

Schnars said if she thinks about Ivana and her current circumstances too much, she starts to cry.

"I'm not sleeping. If I think about it too much, my heart starts racing. But at the same time, what I keep telling myself is these people (the nursing home staff) wouldn't be there if they didn't have a calling to work with the elderly. And what they need from me more than anything right now is support," Schnars said.

She looks forward to being able to visit with Ivana, do her laundry, read to her and decorate her room.

State officials started allowing designated caregivers to enter nursing homes Thursday, but resident advocates were not expecting all facilities to be prepared to let those outsiders enter. State officials released rules Wednesday that facilities had to follow to allow family caregiver visits, leaving very little time for facilities to have new protocols in place.

"With the short time period between release of the rule and implementation, the learning curve for preparedness can be pretty steep," said Kevin Warren, head of Texas Health Care Association, which represents nursing homes and other long-term care facilities. "Facilities must develop visitation policies, testing/training policies for visitors, additional screening requirements, and data collection requirements, as well as implement visitation schedules and coordination."

Other states have allowed some family members to enter facilities, including in Minnesota, Indiana, New Jersey and Massachusetts.

All nursing homes must allow designated family caregivers to enter nursing homes at any time. Caregivers must follow certain testing protocols and can't visit with a family member if they've tested positive for COVID-19. Nichols and her group are on the lookout for nursing homes that might take advantage of loopholes in the state regulations to prevent visitors from entering.

Patty Ducayet, the state's long-term care ombudsman who advocates for resident interests, said the resistance from nursing homes to reopen to visitors comes from the fact that these facilities are overburdened.

"We've just exposed decadeslong problems in our nursing facilities with COVID-19. I definitely believe there's a genuine concern about just how to manage the infection control process with visitors that they haven't really had to think about it," Ducayet said. "And then, there's a lot of things that facilities feel may be better off not letting other people see."

Nichols said visitations are desperately needed because guardians are losing the power to have a say in the care of their loved ones, residents have unequal access to family members, and residents are losing the will to live.

She recounted the recent death of a family member.

"She said, 'I'm living in a jail.' She went from her walker to her wheelchair within a matter of three weeks. She told my sister-in-law, 'I do not want to live like this,'" Nichols said. "So, she didn't."

The benefits of allowing caregiver visits is worth the risk of COVID-19, Ducayet said.

Given how cautious the state has been in reopening nursing homes, Ducayet doesn't believe there will be excessive visitors. She trusts the government will reduce visitations if there's an increase in cases.

"What efforts were made to protect people's health and safety really failed to take into account the psychological and physical effects of that separation from people who matter to residents," Ducayet said. "What state officials have done with Texas nursing facilities and the essential caregiver is a very strong stance that almost gives the resident a right to this person."

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