Combating Cave Syndrome After COVID-19

In April 2020, Eleanor Howland moved into an independent living apartment at Concordia Village of Tampa. She barely left it until July. The continuous care community went on lockdown as the COVID-19 pandemic worsened, so Howland spent months isolated from staff and neighbors she'd never even met.

"I would not have survived without Netflix and Amazon," the 89-year-old says. "I was a librarian, so I read a lot."

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Now, of course, Howland is free to come and go again — the only restriction is a mask requirement in the dining room — and she's finding that most people, like her, are all too happy to get back to normal. "My feeling is everybody has just picked up where they left off," she says.

But not everyone is ready to resume pre-pandemic activities, as a March 2021 report by the American Psychological Association (APA) made clear.

According to that report, 49% of Americans surveyed said they were uneasy about returning to in-person interaction once the pandemic ends, while 46% said they don't want to return to living like they did before COVID-19 appeared. (Perhaps surprisingly, people who have been vaccinated gave virtually the same responses.)

The APA report didn't address the reasons behind so-called "cave syndrome," (a non-medical term relating to the fear of going out, coined by psychiatrist Arthur Bregman) but they could include serious conditions like post-traumatic stress disorder (PTSD). After the 2003 SARS outbreak, a small study found that 44% of survivors developed PTSD, a condition that persisted for years in 82% of the sufferers.

One factor complicating emergence from the pandemic may be the uneven pace at which restrictions are being lifted.

For example, at Shore View Nursing and Rehabilitation Center in Brooklyn, N.Y., family visits are by appointment only, are monitored and only occur in designated areas.

"Before, the families would have free rein to come into our building and pretty much stay the whole day if they chose — be by the bedside, stay until nighttime," says Susan London, director of social work. "That's no longer the case."

Exacerbating potential anxiety at Shore View is that many residents have been unwilling to be vaccinated. "We have a three hundred-resident building, and we had a handful of people sign up," London says. "When we had our next clinics, we'd see a little more and a little more, but nobody's been running to my office asking me to get them signed up."

Changing habits and preferences are also a factor, according to Rev. Melissa Head, associate pastor for care ministries at Christ Church United Methodist in Louisville, Ky.

"I do see some people who are afraid, or who have just gotten into a different rhythm," she says. "We had one person who finally came back to Sunday school this past Sunday, and she kept telling me, 'I'm going to stay at home because I like to sit in my pajamas and drink my coffee.'"

While it's understandable that someone would want to stay home and drink coffee in their pajamas, isolation can seriously affect mental health. Head wonders if enduring the pandemic aged some people prematurely, especially those who were already suffering from Alzheimer's or another form of dementia.

"I don't know how much of it is that they're reluctant to get out so much as that they just really did age, they really did progress," she says. "They don't have as much of a spark or desire to get out."

Ellen Buckley, a nationally certified Aging Life Care Professional in Tampa, says the impact on well-being was widespread among her clients.

"Some people who are well-oriented became so isolated; it was lonely, it was depressing, it was frustrating," she says. "Other people who maybe did not have their cognitive capabilities declined in other ways. They might not have been as spunky or feisty. We saw their hair get longer and their nails get longer. Grooming was sacrificed to safety, but were they really safe if they had hair in their eyes and their fingernails were long?"

As life begins returning to something like normal, here are tips for moving past cave syndrome:

• Acknowledge that the new normal won’t be like the old normal. Head uses the analogy of a Lego set. “It’s like we built something with our Legos and then somebody came and smashed them all up,” she says. “Now we have the same Legos, and we’re building something similar but not exactly the same. Whatever you build now is a new creation.”

• Take the opportunity to make some changes. Head says a lot of the older adults she works with have gotten used to staying home in the mornings, which she thinks is OK. “Maybe you used to always get up and do Tuesday morning bridge; now, because you don’t want to get up in the morning, you eventually start doing Thursday afternoon bridge,” she says. “The key part is not to give up and not to think, ‘Well, I’m not going to do anything.’”

• Recognize that we’re in a transitional phase. Although President Biden is declaring a “summer of freedom” and hosting a big Independence Day celebration, the pandemic isn’t over. At London’s facility, that means restrictions and COVID-19 tests are continuing. “You want to frame it like, ‘This is the way it is now, but it’s not always going to be like that,'” she says.

• Look ahead to a better tomorrow. At the height of lockdowns, London encouraged residents’ family members to make videos of holiday celebrations and send them to their loved ones with a message that “you’re going to be here the same time next year.” She says looking forward instead of backward is an important way to instill hope.

• Take baby steps. “I think it has to be like anything else where we’re out of practice and it feels new,” Buckley says. “It has to be slow and small steps.” That could mean getting takeout from a favorite restaurant, then dining on their patio on your next visit and finally venturing into the dining room.

• Be patient and loving. Finally, Head recommends giving yourself and your loved ones a measure of grace. “We don’t have to be in a competition,” she says. “It’s not a race.”