Brenda Flock and Susan Ellis don’t know each other, but the two women, both 62, have been in the same level of coronavirus purgatory since early March. That’s when the senior facilities where their loved ones live stopped allowing visitors.
Flock’s mother lives "independently” with the help of round-the-clock private aides at the Watermark at Logan Square, a retirement community that offers multiple tiers of senior care. “I couldn’t see her on her … birthday, which broke my heart,” Flock said. (Maxine Flock is in her 90s and would be “horrified” if her daughter said exactly which birthday it was.) The facility has told Brenda Flock that 57 residents have tested positive for COVID-19, but not how many have died.
Flock’s mother, who had a stroke three years ago, doesn’t understand FaceTime, so Flock, wearing a red Phillies cap, comes from Roxborough to wave at her from outside. Flock always phones her mother to say good night.
Ellis has called to calm her husband, Frank, who lives in ManorCare Health Services-Wallingford, a nursing home. At 59, he has multiple sclerosis and early-onset Alzheimer’s disease. At his home, 110 people either have the virus or, like Frank, are recovering from it. The 193-bed facility won’t say how many have died, which is fine with Ellis.
Frank seems healthy now, but Susan Ellis was terrified she’d lose him after the diagnosis. “I wanted to be able to tell him it was OK.” Now the Norwood woman wishes she could hold her husband’s hand. “It’s just sad and lonely," she said, "and it breaks my heart and I know that I can’t be there and we have no choice.”
As much of society begins contemplating greater freedom from coronavirus restrictions, Flock and Ellis foresee continued lockdowns for their loved ones.
Until there are more and better tests available, Flock said, she doesn’t see how senior facilities can open up again “without running a huge, huge, huge risk.”
“I think nursing homes are going to be last,” Ellis said.
‘I think we have several months of this’
Flock and Ellis are not experts, but many experts agree with them. This sector, devastated by a virus that can spread without symptoms and is especially deadly to older, sicker people, will likely have to continue taking extreme precautions well after others have resumed more normal activities.
In fact, the more that people on the outside return to offices, restaurants, and stores, the greater the danger to frail elders who depend on the care of workers who travel between the two worlds. Adding families back to the mix before there’s widespread, quick testing and effective treatments or a vaccine raises the risk of reigniting the wildfire of cases that has raced through some facilities.
The virus has killed thousands of residents of long-term care nationally. More than half of the deaths in Pennsylvania and New Jersey have been among people connected to care homes.
The Society for Post-Acute and Long-Term Care Medicine, which represents medical directors of nursing homes and other senior facilities, has explicitly said that government entities should stipulate such facilities will be the last to reopen.
“We should not be looking to lift visitor restrictions in the immediate future, and I know that’s going to be profoundly disappointing to a lot of people," said David Nace, the organization’s president and clinical chief of geriatrics at the University of Pittsburgh.
“I definitely feel for family members and I hope that this ends sooner rather than later, but sadly, I think we have several months of this,” said Morgan Katz, an infectious-diseases specialist at Johns Hopkins University who is working with the State of Maryland to fight the virus in its nursing homes.
Katie Smith Sloan, president and CEO of LeadingAge, which represents nonprofit nursing homes and assisted-living facilities, said her members can’t keep the virus out without the ability to test staff at the beginning of every shift. Her members, she said, “will be slow-walking their process of reopening and being incredibly cautious and deliberate about it. They know what’s at stake, because they’ve been living it.”
What the near future could hold
Some facilities, though, are beginning to imagine what the near future holds. Could family members see their loved ones in a dedicated room, with a tall wall of plexiglass between them? During the summer, could they visit outside?
Even if family visits remain unacceptable, maybe some socially distanced activities could come back in places where residents are healthy. Some already do exercises and hallway bingo. Nate Wardle, a spokesperson for the Pennsylvania Department of Health, said the state is “working on guidance” for how care homes can return to “more typical conditions.”
Keeping seniors safe from this virus comes with a hefty price. Isolation, loneliness, and boredom can lead to depression and cognitive decline. Jason Karlawish, codirector of the Penn Memory Center, said family caregivers like Flock and Ellis know residents well enough to spot changes and advocate for good care. Jerold Rothkoff, an elder-law attorney with offices in New Jersey and Pennsylvania, said residents often get better care when families visit frequently. They bring food, do laundry. “That is gone and the staff had to pick up the slack, and they can’t do that,” he said.
Karlawish and Rothkoff argue that key family members, outfitted with proper protective gear and trained to use it, should be able to visit homes without outbreaks soon. Rothkoff pointed out that the virus has obviously gotten into many care homes, largely through staff, even while families were held at bay.
“Once we accept that caregivers have a role in care of their family,” Karlawish said, "I think the next step is to work out the quotidian details of who and when and how instead of just saying no no no no. "
Flock wonders about that too. Her mother’s aides go in and out of Watermark. Flock has offered to take some of their shifts, protected as they are. She was told no. “Life doesn’t go on forever,” she said. “I don’t know what I should do.”
Better prepared next time
The coronavirus likely entered many nursing homes before the nation realized how many people can be infected — and infectious — without having symptoms. Facilities thought they could protect residents by taking staff temperatures, not realizing how many people can have the disease without fevers. Testing was reserved for those with clear-cut symptoms, and it took days to get results. The disease could get a stubborn foothold before facilities knew they had a problem.
Staffing, funding, and infection-control problems predated the pandemic in some nursing homes. Staffing problems got worse as employees stayed home because of symptoms or fear. Crucial supplies like masks, gloves, and gowns were — and sometimes still are — in short supply. Many facilities can’t procure enough tests to assess how big their coronavirus problem is.
While early data from China made it clear the elderly were at very high risk, industry leaders complain that hospitals got the lion’s share of attention until nursing home cases mounted.
“I absolutely think we’ve been slow at every stage in getting resources to nursing homes,” said David Grabowski, a health-care policy professor at Harvard Medical School. Many facilities, he said, are still in “crisis stage.”
Reopening will require that homes be better prepared for future waves of COVID-19.
The federal government last week said it would send enough personal protective equipment (PPE) for a week to nursing homes, a step some advocates derided as too little too late.
Pennsylvania’s health secretary, Rachel Levine, said the state is now sending the “vast majority” of its PPE to nursing and personal care homes. The state has also teamed with ECRI, a Plymouth Meeting nonprofit devoted to health-care quality, and the Patient Safety Authority to help nursing homes improve infection-control procedures and be better positioned for future outbreaks.
New Jersey’s attorney general, Gurbir Grewal, is investigating what went wrong in his state’s nursing homes. “For many of these facilities, this was the equivalent of a 500-year flood,” he said during a briefing last week. The state has begun to test all nursing home residents. It also is delivering PPE and has brought in experts to improve procedures and oversight.
A possible silver lining of the case deluge in some facilities, Katz said, is that some may now have herd immunity — enough people who have had the disease to prevent easy spread. Scientists are still not sure, though, that people who have had COVID-19 can’t get it again.
Katz thinks nursing homes will be better positioned if they start testing everybody now and then test again in a few days, as Maryland plans to do. At one Maryland facility, 63% of residents tested positive. (Almost three-quarters had no initial symptoms.) A week later, nearly a quarter of those who had tested negative had turned positive.
After that first round of tests, Katz thinks facilities should keep kits on hand to speed the testing process if new residents develop symptoms. Staff would need more frequent tests.
All that could help keep cases down in the facility, but visitors are still a problem, said Karen Schoelles, a geriatrician who is leading ECRI’s Pennsylvania coronavirus team. We don’t know how well masks protect against the virus. We don’t even know what proper protective gear is for this virus, she said. “We don’t have a really good way to say it’s safe for you — you specific individual — to come into this building.”
In the meantime, Mary Ersek, an elder-care expert at Penn Nursing, hopes facilities will beef up their efforts to maintain virtual connections between family members and residents. The community could help by donating iPads, offering to talk with lonely residents by phone or computer, or performing virtual concerts.
For now, Ellis is raising her husband’s spirits by sending presents: a plant, Incredible Edibles and Tastykakes. She’s on the nursing home’s list to FaceTime with him. She’s also started to prepare him for the possibility that she won’t see him in person for a long time. She wants him safe and thinks everyone else should, too. It galls her that some seem ready to sacrifice nursing home residents for the economy.
“We need to respect and honor these people because each one of them has a story," she said. "Each one of them had a life. Each one of them contributed to society. They’re not disposable.”