On the back porch of a Scottsdale house turned boutique nursing home, residents are able to do something many of their peers in other long-term care facilities haven’t been able to do since March – see their loved one’s face without staring at a computer screen.
But the setup at Dream Catcher Premier Assisted Living is still far from normal, more like a prison visit than a pre-COVID-19 trip to see grandparents.
A resident, masked, sits at one end of a 6-foot table with a plexiglass barrier in the middle. Masked family members, who’ve had their temperature checked and been given hand sanitizer before sitting down, are on the other side. And fans are set up to blow toward the family, so if anyone removes a mask to speak air and droplets will blow back toward the outsiders, not the vulnerable older adult living at Dream Catcher.
“It’s difficult,” Dream Catcher President Gaile Dixon said. “It’s very difficult. The isolation is hard on everybody, especially people who have dementia. They don’t know how to process what’s happening.”
Tens of thousands of families across Arizona have elderly or incapacitated relatives who have been locked down in nursing homes, able to talk only through computer screens or glass panes since mid-March. Keeping visitors out of facilities intended to care for the state’s most vulnerable adults was a way to ameliorate the spread of a disease that has already infected more than 3,800 Maricopa County residents living in assisted living centers and killed 829 of them (the state does not report data specific to care facilities).
But as infection rates continue to look worse than they did in March and the specter of a winter flu season approaches, patients and caregivers at Arizona’s long-term care facilities are dealing with another crisis – loneliness. Regular visits with family and friends aren’t happening, and communal activities in the homes themselves are rare — anything to prevent the spread of COVID-19.
Into this quagmire stepped a 25-person task force of lawmakers, long-term care providers, advocates for older adults and family members with a little less than a month to come up with recommendations for phasing in-person visits back in.
Dixon is on the task force as the only representative of an assisted living home, defined as a residential location that can care for up to 10 residents. Others represent larger facilities.
Recommendations will likely depend on the type of care facility and how the disease is spreading in the surrounding area, said task force member Sen. Kate Brophy McGee, R-Phoenix.
“I heard a strong request for autonomy and decision-making local to the facilities,” Brophy McGee said. “For instance, if you’re in an assisted living home, the space just isn’t there.”
One novel approach Brophy McGee heard from a friend in the Midwest was taking parents out of their assisted living facility after the entire family tested negative for COVID-19, with the understanding that the parents will have to quarantine when they return to the facility.
Meanwhile, one of her constituents sent letters explaining that his wife, who lived in an assisted living facility, died of a broken heart. After March, they were allowed one visit, in July, separated by the glass pane window of the facility’s entrance.
“I could see the heartbreak and loneliness in her eyes through that big glass window on that hot day in July,” the man wrote. “How different it was compared to all those times I’d pop into her room every day and watch her eyes brighten, cheeks flush with color, and mouth wide open with a smile when she saw me and pulled me close once I was at her bedside.”
Phoenix resident Amy Loen, likewise, has been allowed just one visit with her father — when doctors feared the 61-year-old man wasn’t going to survive injuries he sustained in a May motorcycle accident. Loen’s father sustained a traumatic brain injury during the crash, and he now requires a speech valve to communicate because of a tracheostomy.
But nurses and doctors haven’t always given him his speech valve during video calls, and Loen and her family can’t tell through the videos whether her father’s slurred speech is because of the brain injury, overmedication or just getting used to a new way of speaking.
“We don’t know how delirious he is or how conscious,” Loen said. “We’re having trouble getting him to connect. And so there’s a lot of questions. Is this a depression issue? Is this because things seem hopeless? Is this because of the brain injury? Is he just not able to connect things?”
If she or her sister were able to see their father, they’d be able to help the nurses and doctors caring for him who don’t know his personality or speech patterns, Loen said. Instead, he’s alone in a strange place surrounded by strangers, and his family feels helpless.
“If it weren’t for this I would be on FMLA leave and I’d be there every day,” Loen said. “But because of this I go to work eight hours a day, because what’s the point of taking leave if all I can do is sit here and twiddle my thumbs, or sit on a video call for a half hour?”
Since March, long-term care facilities have only allowed visits through barriers or because of compassionate care exceptions, such as a final trip to say goodbye to a dying relative. That’s tough on the residents and staff at facilities, but it was needed for safety, said Dave Voepel, CEO of the Arizona Health Care Association.
“When COVID-19 gets into a building, it is truly a wicked killing machine, especially when you understand that those in skilled nursing facilities are there for a reason,” Voepel said. “They have respiratory issues, they have acuity issues, they have physical problems and COVID-19 really takes advantage of that.”
Task force members are reviewing guidelines from other states, dozens of which have already allowed care facilities to resume visits — with some restrictions. If communities no longer have community spread of the disease, it will be possible for facilities to go through a phased reopening, Voepel said.
And while the task force is focused on recommendations for how to resume visits, long-term care facilities are grappling with workforce problems exacerbated by the pandemic. The industry was already struggling to recruit and maintain an adequate workforce before this spring — many jobs pay little more than minimum wage and require unpleasant work, including cleaning bedpans and changing adult diapers.
The COVID-19 pandemic added worries about adequate personal protective equipment, delays in testing and a potentially deadly disease to what was already a stressful job.
“We had a workforce problem before this, and it got exponentially worse, going into a pandemic, just because we can’t even see the enemies,” Voepel said. “So how can we fight against something that we can’t see, especially with asymptomatic people?”