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COVID left her facility locked down. But this Christmas, she has her daughters back.

The (Raleigh) News & Observer logo The (Raleigh) News & Observer 12/24/2020 Martha Quillin, The News & Observer (Raleigh, N.C.)

Dec. 24—The first time Karen Espenhahn was allowed to visit in person with her 89-year-old mother after COVID-19 hit in March, it was October.

Espenhahn and her mom, Thelma Miller, were ushered into a room in the memory unit of a long-term care facility in Cary, where Miller had recently relocated.

Petite women both, they were seated at opposite ends of a long table, separated by a plastic shield.

It reminded Espenhahn of the jail visits in TV crime dramas.

Despite cognitive issues that made it challenging for her to work a cell phone or a television remote, Miller saw the resemblance too. At one point, she asked her daughter, "What did I do wrong? Why did you put me here?"

It nearly broke Espenhahn's heart, after she and her sisters — Tracy Ryder of New York and Cheryl Brown, who lives near Espenhahn in Cary — had worked so hard and worried so much searching for a suitable place for their mom over the previous nearly two years.

"What she perceived was, she felt like she was all by herself, locked in that facility," Espenhahn said. "She couldn't remember day to day what was going on. She would ask, 'Why am I here? Why can't you come in? Why can't I come out?'"

The answer, of course, was COVID-19, the first pandemic to hit during the modern age of elder care, when about 1.5 million people — 4.5% of older adults — are living in nursing homes in the United States. Some families say the pandemic, which has hit just before the country is about to see massive growth in its over-65 population as the Baby Boomer generation turns the corner, has revealed major weaknesses in the institutions that house some of America's most vulnerable residents.

According to data from the Kaiser Family Foundation, since the start of the pandemic, COVID-19 has been the cause of 113,891 deaths of residents and workers at long-term care facilities the U.S. In North Carolina, the Foundation says, only 6% of known COVID-19 cases have occurred in long-term care facilities, but 49% of the deaths — 2,849 as of Dec. 23 — occurred in those places.

State data show that as of Dec. 20, 2,356 of those deaths had occurred among nursing home residents and staff.

The U.S. Centers for Disease control has said that COVID-19 is deadliest among the elderly and those with underlying health conditions such as diabetes and heart and lung disease.

Because of the close living conditions,once the virus is introduced into a long-term care facility, it can travel fast and far, especially in larger facilities. The state Department of Health and Human Services reports that some nursing homes have had between 100 and 200 cases and many have had more than a dozen deaths.

Looking for alternatives

Reports of outbreaks and deaths in large facilities sent families such as Miller's scrambling to see what other accommodations they could make for their mom.

When the pandemic hit, Miller was in an assisted-living complex in Cary, where the girls had moved her in March 2019 from her home in Wilmington. She had a third-floor apartment and a lot of autonomy: she could get up in late morning, as she prefers, have coffee in her pajamas and dress at her own pace.

She could have lunch with neighbors in the dining room, which she enjoyed even though she didn't always remember anyone's name. In the afternoons, there might be activities she could join in.

Espenhahn and Brown were frequent visitors, and Ryder, in New York, would use FaceTime to take Miller along virtually on regular walks.

Then came COVID.

To try to reduce the spread of illness, congregate living facilities went into lockdown in mid-March, bringing life as Miller knew it to a halt. No more eating in the dining room; all meals had to be taken in residents' apartments, alone. No more games, no more crafts, nor group exercises.

And no visitors. Miller's daughters couldn't come in, and she couldn't go out of the facility to visit with them.

As a compromise, Espenhahn and Brown would come to the facility with homemade goodies or milkshakes bought on the way over, and they would have Miller come out on her balcony while they stood on the ground below. They would talk on the phone, and using a basket they had brought for their mother to tie to her railing, they would send up their treats.

It was better than nothing, but it wasn't enough.

By the fall, Espenhahn and Brown knew it soon would be too cold for Miller to converse from the balcony, and they could tell she was deteriorating physically and mentally.

"She wasn't eating much," Espenhahn said, and appeared on camera to be losing weight. She seemed to be getting more forgetful.

Dementia and isolation

The sisters understood why the facility had imposed rules to keep the residents and employees apart but, Espenhahn said, "When you're dealing with any sort of dementia, one of the worst things that could happen is isolation."

With a second and worse wave of the pandemic on the horizon, Espenhahn and Brown began looking for other options. In October, they decided to move Miller into the memory care unit, believing that she would be safer there but also because within the unit, residents were allowed to eat socially distanced together in the dining room.

After all those months, they thought, Miller would be able to interact with other people again.

But Miller told her girls that most of the people in the unit were in much worse shape than she, and it was difficult to interact with them. The facility wouldn't allow the technology the sisters had used to electronically "drop in" on their mom, because of the risk of catching a glimpse of other patients and violating their privacy.

They tried a few times to stand outside her room so they could see each other through the window and talk on the phone, but Miller had trouble with the device and staff was usually too busy to help. Miller's situation was going from bad to worse.

"We were frustrated," Espenhan said. "Mom was not happy. We didn't know what we were going to do."

Espenhahn, who works as an audiovisual consultant, was describing the situation when a coworker mentioned that they knew someone who ran a family care home. Espenhahn had never heard of this alternative to nursing homes, regulated by the state and the counties, and offering a lower caregiver-to-patient ratio than larger facilities.

A nursing home might have hundreds of residents and their caregivers might have oversight of six or eight patients each. Family care homes are licensed for two to six residents total, and at least one caregiver is on site at all times.

The operator of the first family care home Espenhahn contacted set up a tour for her, but someone else took the room sight-unseen before Espenhahn could even look at it. That owner directed Espenhahn to a second family care home, which she visited but felt wouldn't be a good fit for her mom.

'They just weren't prepared for anything like this'

The operator of that home suggested Espenhahn call Marla Briscoe Benton, a former nurse who started a business four years ago specializing in placing residents who need an elevated level of care into family care homes in Wake and surrounding counties.

Espenhahan called Benton on a Friday night, and Benton asked her some questions about her mom to determine which of the dozens of homes she is familiar with might be a good match.

"I'm getting calls all the time since COVID started," Benton said. "Not because the facilities where people are living are all bad, but they just weren't prepared for anything like this." When they had to take action to prevent viral spread, most nursing homes didn't have a plan for keeping residents socially and mentally engaged. And for some patients, the resulting isolation has been devastating.

Benton sent Espenhahn to tour a family care home in Cary — close to her house and her sister's — that was brand new, built for this purpose and ready for occupancy.

Miller became its first resident. When her daughters came to get her from the memory care unit, she was so shocked to see them, she asked, "Is that really you? Are you really here or am I dreaming?"

She moved in Nov. 20, a week before Thanksgiving. She picked a room on the front corner, where she can watch the traffic on Tryon Road, because the passing cars remind her of her husband, who loved automobiles. The house has gleaming oak floors with high ceilings, and Miller's bedroom and bath look like a suite in a nice AirBnB.

The front porch has four painted rockers, and there's a sidewalk that circles from the front door to a screened porch on the back. The house is surrounded by tall pines.

Inside, four leather recliners and a cushy sofa are oriented toward a big screen TV. When that's not on, classical music plays. The living room is open to a kitchen with a massive stone-topped island, and meals are taken at a table in a dining nook at windows that look into the trees.

Because of the risk of being exposed to COVID-19 and bringing it back to the house, residents still can't leave to visit with family members. But Brown comes by on her way home from work nearly every evening and Espenhahn is there most Saturdays. Usually, they chat on one of the porches, or stroll on the sidewalk, or sit in the study six feet apart.

At Thanksgiving, Espenhahn says, the house was filled with the delicious smells of turkey and honey ham. Miller can see the food being cooked.

Now, the house is done up for Christmas, with a tree in the main living area that Miller and other residents helped decorate. There's a small Christmas tree in her bedroom, too.

Miller and some of the other ladies in the house love Hallmark Christmas movies, and they gather in the living room to watch together, Miller sitting in one of the giant leather recliners, her feet dangling in the air.

Espenhahn and Brown will spend part of Christmas Day at home, they said, then come to see Miller in the afternoon to celebrate the holiday. That's also Miller's 90th birthday. There will be cake on the back porch, and presents.

A week before the big day, she had asked for just one thing.

"She wants me to bring her some cookies, so she can share them with her new friends."

Marla Brisco Benton, owner of Transitioning Senior Consultants, can be reached at 919-923-6015 or marla@transitioningsenior.com.

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