PUMPING IRONY: Locked Out

While COVID-19 has exacted a huge toll on those coping with a chronic disease, few have suffered more than older adults struggling with dementia.

A sad woman looks out the window.

It’s pretty well accepted these days that the last place you want to spend any time during the current pandemic is wandering the halls of a nursing home. Except, of course, if a loved one happens to be residing there.

That irony hit home for me the other day while reading about Dan Goerke and his 63-year-old wife, Denise, who is struggling through the late stages of dementia in an Atlanta-area nursing home at a time when COVID-19 has essentially barred family contact. The isolation, Dan argues, is hastening his wife’s demise.

“Every day it gets a little worse,” he tells William Wan in the Washington Post. “We’ve lost months, maybe years of her already.”

The Goerkes are not alone in their suffering. More than 134,200 people struggling with various forms of dementia have died since the virus took hold in March — some 13,200 more deaths than would be expected, based on previous years. That’s more excess deaths than those associated with the next two causes — diabetes and heart disease — combined. And experts are pointing to the lack of social and mental stimulation occasioned by nursing-home lockdowns as the primary cause.

While government officials have pushed aggressively to reopen businesses, schools, and recreational venues, they’ve mostly ignored pleas from nursing homes and their clients for the testing supplies and protective equipment required to allow safe visits. “It’s like the country just don’t care anymore about older people,” Goerke says. “We’ve written them off.”

The virus hasn’t just kept family members from visiting their loved ones; it’s forced many nursing homes to drop game nights, exercise classes, and even lunches — activities designed to curb social isolation. The result, Wan reports, is a steep increase in depression and an acceleration of dementia symptoms among residents.

“We have clients who have lost almost 30 pounds,” says Sharon O’Connor, who manages a program for dementia patients in Washington, D.C.. “Some just don’t have reason to get up anymore, so they stay in bed all day. Others sit by themselves in a dark room.”

Family visits don’t just offer a respite from what can be an isolated life, notes Alzheimer’s specialist Jason Karlawish, MD, at the University of Pennsylvania. They provide vital services that many short-staffed facilities depend upon. “Families fill in a lot of gaps at nursing homes. They do much of the feeding and bathing. They advocate and communicate,” he explains. “If you think of Alzheimer’s as a disability, family members are almost like a cognitive wheelchair for patients who have lost part of their mind. They’re essential.”

Dan Goerke played that role after moving Denise into a long-term care facility in 2016: visiting every day, feeding her lunch, showing her pictures of their kids. He found her upbeat and engaged. But when the pandemic struck, the nursing home — which had already been struggling financially — closed its doors. After two weeks and 15 rejections, Dan finally moved Denise into another facility. She had by then stopped eating and interacting. “I wasn’t sure she would live long enough for us to get her to the new place,” he recalls. “She looked ashen. Her skin became paper-thin.”

The “window visits” at the new place did nothing to improve her condition. She seemed to be wondering why he didn’t come inside, and after a few weeks she simply stared vacantly at the window.

Goerke appealed to Georgia Governor Brian Kemp to provide the rapid testing needed to release the state’s nursing homes from his lockdown, but he received no response. At the federal level, the Trump Administration has delivered trillions of dollars in emergency funding to businesses, but funding for long-term care facilities has been embroiled in controversy.

During a recent visit, staff wheeled Denise to an open doorway where Dan was joined by one of their sons and their 2-year-old granddaughter. Their salutations triggered no recognition until Dan offered a loud “HELLO!”

They noticed a brief flash of awareness in Denise’s eyes; her lips moved slightly. “Hi.”

It’s moments like these, amid all the despair, that keep Dan and his family going. “It’s like you’re a ship stuck in the fog, and suddenly you see the lighthouse. It’s golden. It’s the world. It’s the only thing I hope for when I visit,” he explains. “It’s like there’s my Denise, and for a moment, we’re back home together.”

is an Experience Life deputy editor who explores the joys and challenges of aging well.

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