For the families of Texans living in nursing homes and long-term care facilities, Gov. Greg Abbott’s decision to lift restrictions on visitation came not a moment too soon.
“Certainly it’s been difficult, regardless of what the level is with your abilities,” said Mike Danks, president of the Denton State Supported Living Center Family Association.
Danks and his wife haven’t seen their adult daughter, whom they preferred not to name publicly, since the first week of March. She has severe autism, and the Danks found the private homes inadequate to care for her. Without proper supervision and a careful medication schedule, their daughter has a tendency to have violent outbursts. The Danks said they found DSSLC a better fit.
Like other Texas families with loved ones in care facilities, the Danks have had to make do with video chats. Their daughter will interact by phone for a short time, and is accustomed to video calls with her grandparents.
“If you’ve got family and you can’t visit them, it’s difficult,” Danks said. “It’s been difficult for us because we haven’t been able to visit her. And it’s difficult because we haven’t been able to see mom and dad, either. I think it’s tough across the board.”
As of Thursday, Abbott’s orders allowed families to designate up to two essential family caregivers to get the necessary training to safely go inside a facility for a scheduled visit. The order allows the designated caregivers to enter the resident’s room.
The order is the first to allow designated caregivers this degree of access “to help ensure their loved one’s physical, social, and emotional needs are being met” since the state-mandated lockdown in March.
Designated caregivers don’t have to practice physical distancing, but only one caregiver can visit a resident at a time.
Angela Biggs made sure she had a negative COVID-19 test, which is required along with personal protection equipment training, so she could see her daughter on Thursday. She wore safety glasses and a mask. She arrived at the center with flowers and cupcakes.
“She definitely knew it was me,” said Biggs, whose daughter, Amber Reynolds, 29, has lived since at the center since 2014. Amber suffered a brain injury at birth and, after years of seeking treatment, was diagnosed with severe mental retardation and severe bipolar disorder with psychosis.
“I used that moment. I looked at Amber and I said ‘Amber, look at me eye-to-eye. I thought about you and prayed for you every day.’ And I made her say ‘day.’ I told her ‘I couldn’t come in, Amber.’”
Biggs said she was careful not to mention the staff, whom she praises and says give her daughter love and care. She didn’t want to risk Amber getting angry at the men and women who have taken care of her throughout seven months of lockdown. In March, the center was hit hard by the coronavirus that causes COVID-19.
Biggs said she was able to give her daughter the flowers — Amber loves yellow, and grinned over the bright, mostly yellow bouquet. The staff had to inspect the cupcakes to comply with pandemic health and safety rules.
Biggs could only stay for an hour and a half. She spent the short time chatting with her daughter, trimming her nails and inspecting her room for clues about how Amber fared without consistent, face-to-face contact with her mother.
“She’s not sleeping in her bed,” Biggs said. “She’s been sleeping on her couch. She’s not keeping warm. I can just tell this has been hard on her.”
Olivia Lilley and her husband, Bryan, have been caring for Bryan’s 88-year-old mother, Marylin, since she was diagnosed with Alzheimer’s Disease years ago. Marilyn lived next door to her son just outside of Aubrey for years — until her disease progressed to the point when round-the-clock supervision was needed.
In 2012, the Lilleys moved Marilyn into Willowbend Assisted Living & Memory Care in Denton. Olivia said her mother is still in the assisted living portion of the facility, where she has her own room. Marilyn’s condition causes her to self-isolate, and her memory seems to last for less than a minute. Lilley said she and her husband visited almost daily before the pandemic. Bryan works for Fox Sports covering the NFL, and when he travels for work Olivia takes over her mother-in-law’s care.
Olivia said her family couldn’t do without the love and care of the staff and director of Willowbend.
“They’re doing absolutely everything they can,” Olivia said. “We know that. Their hands are tied by the governor’s orders. It’s just so frustrating, and back at the end of August Byran and I were at the end or our rope. We were thinking about breaking her out.”
The Lilleys had good reason to be alarmed. Willowbend decided to close its dining room to protect vulnerable residents. The residents suddenly had to stay in their rooms at all times.
Olivia was glad she and her husband had mounted a camera in the living area of her mother’s room. But what she saw was frightening. Marilyn didn’t seem to understand her meals were being brought to the room. She wasn’t eating, and eventually, she was sitting on her floor, playing solitaire from 7 p.m. to 7 a.m. She was losing weight and growing agitated.
“She called my husband and asked, ‘When are you coming to get me?’” Olivia said. “He was so heartbroken. You have to meet people with Alzheimer’s where they are, and he told her ‘I’m coming, mom.’ Then we watched her pack up entire room. She took pictures off the wall. She found the camera and took it down. She did that a few times. She packed up her whole room and waited for him to come pick her up.”
The Lilleys have taken advantage of the gradual easing of restrictions. They’ve done window visits and porch visits.
“Before COVID-19, I’d take her to get her hair done once a week. It was a chance for her to get a really good shampoo, and it was with a hairdresser who loves her and knows how to talk to her. Like, she knows to talk to her and not just ignore her and talk to me,” Olivia said. “I’m sorry to get emotional, but it’s been hard to hear middle aged women talking about needing to get their nails done. My mother-in-law hasn’t had a haircut in seven months. It breaks my husband’s heart to see her looking so unkempt.”
Olivia said her family is trying to decide whether to leave Marilyn in assisted living. With flu season approaching, the Lilleys worry that Marilyn will once again be shut in her room, where she can’t see or hug loved ones.
Caregivers live with competing feelings: They praise the staff and directors of the facilities for doing their best to care for resident and comply with the state. But they and the government can’t satisfy infuriating questions that keep loved ones from the routines they need.
“I just want someone to tell me, how long is a negative test good?” Biggs said. “You do everything in your power to keep your child safe. You can’t do everything.”
Danks said the rules aren’t a guarantee.
“The way I look at it, the negative test is good until I walk out the door of the place you got the test,” Danks said. “But the negative test is a little better than no test at all. There’s no perfect world.”
Olivia said Abbott simply can’t understand what caregivers are going through, and they don’t seem to imagine what the lockdown has done to Texas’ most vulnerable residents.
“What would Gov. Abbott do if he was locked in a room and his wheelchair was taken from him? I want to know,” she said. “Because that’s what our loved ones have been living. Everyone wants to protect this group of people. I totally get that. ‘This is the Greatest Generation,’ they say. ‘They must be protected at all costs.’ But what is the cost? Because this is prison. I’m sorry, but it just is. And what’s going to happen this winter? We can’t do another lockdown with my mother-in-law.”