Pandemic isolation is killing Alzheimer’s patients while families watch from afar

If only Dan Goerke could hold his wife’s hand.

Maybe she would talk again. Maybe she would look at him and smile like she used to. Maybe she would eat and stop wasting away.

Since the pandemic began, Goerke’s wife, Denise - 63 years old and diagnosed with Alzheimer’s disease - had declined dramatically. Left alone in her nursing home, she had lost 16 pounds, could not form the simplest words, no longer responded to the voices of her children.

In recent weeks, she had stopped recognizing even the man she loved.

Goerke, 61, could tell the isolation was killing his wife, and there was nothing he could do but watch. “Every day it gets a little worse,” he said. “We’ve lost months, maybe years, of her already.”

Beyond the U.S. deaths caused directly by the novel coronavirus, more than 134,200 people have died of Alzheimer’s and other forms of dementia since March. That is 13,200 more U.S. deaths caused by dementia than expected compared with previous years, according to an analysis of federal data by The Washington Post.

Overlooked amid America’s war against the coronavirus is this reality: People with dementia are dying not just of the virus but of the very strategy of isolation that’s supposed to protect them. In recent months, doctors have reported increased falls, pulmonary infections, depression and sudden frailty in patients who had been stable for years.

Social and mental stimulation are among the few tools that can slow the march of dementia. Yet even as U.S. leaders have rushed to reopen universities, bowling alleys and malls, nursing homes say they continue begging in vain for sufficient testing, protective equipment and help.

“It’s like we as a country just don’t care anymore about older people,” Goerke said as he drove to his wife’s nursing home in Atlanta’s northern suburbs. “We’ve written them off.”

In recent weeks, Goerke has struggled with anger - at U.S. leaders and at people who continue to reject simple measures such as wearing masks. As long as the virus keeps spreading, Goerke knows there’s no way to safely visit his wife.

His worst fear is that by the time he can hold her hand, it will be to say goodbye.

With cases in Georgia still high, the closest thing Denise’s nursing home has allowed is for Goerke to stand for a few minutes by the front door while attendants wheel his wife to the lobby.

So for months he has been traveling to that doorway and calling out - trying to get a reaction, to cut through the thickening fog of his wife’s dementia.

“I still believe a spark of her is in there,” he said as he arrived once more at her door on a recent Saturday.

He phoned the nursing aides inside. A few minutes later, they pushed Denise into the lobby, her body so frail it was disappearing into the wheelchair.

Goerke took off his mask in case it would help her recognize him. And he called out.

“Hi, Denise!”

Inside the darkened lobby, he thought he saw his wife’s lips move.

No reason to get up anymore

The United States has counted tens of thousands of excess deaths since the pandemic began. These are deaths that are not directly attributed to the coronavirus and that occur because of problems such as hypertension or sepsis. But they are occurring at much higher levels than in the past, experts say, in part because of the pandemic’s indirect effects including hospitals being overrun or care being delayed.

Among the sources of excess deaths, dementia has produced by far the most, more than the next two categories, diabetes and heart disease combined.

For one man in Indianapolis, the rapid deterioration of his dementia made it harder to swallow. Food that went down the wrong way led to a lung infection and eventually death, his daughter said. For a woman in Boston, her body - no longer able to move - became so atrophied and frail that a slight fall sent her into a death spiral of hospitalizations, her doctor said.

Other cases have been more subtle. In isolation, many are struggling with severe depression. “We have clients who have lost almost 30 pounds,” said Sharon O’Connor, who runs a program for dementia patients at Iona Senior Services, a District of Columbia nonprofit. “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.”

In interviews with The Post, people with dementia who are still able to communicate said they felt trapped and doomed. Activities that used to stimulate their minds - music therapy, game nights, Jazzercise - have ground to a halt. At most facilities, residents are not even able to eat lunch together anymore.

One woman in D.C. - who has not seen her children, grandchildren or siblings since March - described the horror of witnessing her mind deteriorate in isolation. “I not talking with the whole sentence anymore,” She wrote in a series of text messages about her decline. “Not got balance. Painful cramping.”

It’s not just the loss of interaction, said Jason Karlawish, an Alzheimer’s expert at the University of Pennsylvania. “Families fill in a lot of gaps at nursing homes. They do much of the feeding and bathing. They advocate and communicate,” he said. “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.”

Light amid the fog

In 2012, when Goerke and his wife got word of her diagnosis, Denise made him promise to never put her in a nursing home.

But after four years of juggling his work as a commercial real estate broker with the full-time care Denise needed, Goerke worried constantly that his wife would accidentally hurt herself when he was not looking.

The day he moved her to a long-term care facility, he felt relief, shame, guilt. The one consolation: He could visit anytime.

Seven days a week, he fed her lunch, combed her hair, showed her pictures of their kids.

They had been together for 23 years. Both had been divorced, and they spent their first five years taking turns getting cold feet before realizing their love was stronger than any fears about the future.

Denise had worked as a saleswoman for Xerox, but she was an artist at heart. Her children recalled growing up in a house filled with projects in progress, walls constantly being painted or being evaluated for a repaint. And she was a social creature. Even later at the nursing home, with seven siblings, three children and three grandkids, there were days when they had to coordinate all their visits.

More often than not, they would be greeted by the Denise they knew: eager to laugh at their jokes, interjecting with a word or nod, always reaching out for their hands.

Then came the pandemic.

Denise’s nursing home had long struggled financially, even before the virus. At the outset of the pandemic it was suddenly fighting to buy protective equipment and retain staffers afraid of falling ill.

A tiny portion of the U.S. population lives in nursing homes, yet the facilities have accounted for about 40% of U.S. deaths of covid-19, the disease caused by the novel coronavirus. Overwhelmed, Denise’s facility announced in late April that it was closing.

Goerke immediately started dialing other residences. Many, desperate to keep the virus out, refused to take anyone new.

It took two weeks and rejections from 15 nursing homes before he found one willing to take Denise. By then, his wife was the only resident left at her old facility.

Her last four days before the move were spent alone, except for a few employees preparing to shutter the building. She stopped eating and simply lay in her room at the end of a long, empty hallway.

“I wasn’t sure she would live long enough for us to get her to the new place,” said Goerke, who checked in daily by phone and FaceTime. “She looked ashen. Her skin became paper-thin.”

At the new nursing home, staff members scheduled window visits for families. That’s when Goerke saw the pandemic’s toll on his wife.

The bright blond hair he used to comb was dull and sparse. Her face was pale and gaunt.

Goerke had to yell through the thick window to be heard. The first few weeks, Denise reached out her hand. He could see through the glass that she was confused about why he would not come in, and the look on her face felt like an accusation.

Worse yet was when Denise stopped reaching out a few weeks later and just sat in her wheelchair with a vacant stare.

A flicker of hope

“It’s me,” Goerke shouted from the doorway, during his recent Saturday visit.

The only reply from the nursing home lobby: silence.

Undeterred, Goerke kept the conversation upbeat, pausing every few words to give Denise a chance to respond: “It’s a hot one out here. . . . Almost 90 degrees. . . . You’re lucky to be inside.”

On this particular Saturday, Goerke had invited others in hopes they might jog his wife’s memory.

Denise’s son Steve Ayotte soon arrived, along with his wife and their 2-year-old daughter.

“Hi, Mom,” Steve said. He turned to his daughter, “Can you say hi to Nana?”

“Hi, Nis-ey,” the girl said shyly.

Finally, it was one of Goerke’s more energetic “hellos” that seemed to hit home.

The sudden response emerged from his wife’s lips with a startled tone, as if Denise was surprised to find them all suddenly before her: “Hi.”

To Goerke, that small word was everything.

It was proof his wife had not yet reached the final stages of her disease. More than that, it was a bulwark against that encroaching future.

All these days he has spent talking to himself at her doorway, he said, were worth it if it helped engage her mind even a little. They were worth it if it meant some part of her heard him and felt a little less alone.

A plea for help

Goerke, who used to feed Denise daily, recently asked her caregivers about her meals. He was alarmed when they said they now have to persuade her to open her mouth. He worries that Denise, no longer able to speak, may be expressing distress the only way she still can.

Most people are suffering in some way during the pandemic. But it feels at times, Goerke said, like the suffering of people in nursing homes has been shoved into a corner to make room for everyone else’s. Even now, as the country debates endlessly about reopening schools and protecting the economy, there’s little urgency about the plight of people such as his wife.

Countries such as the Netherlands have safely reopened their nursing homes without any increase in coronavirus cases by providing protective equipment, testing and rigorous protocols.

But in the United States, little of the trillions of dollars in emergency funding has gone to nursing homes. For months, the Trump administration has talked of getting more testing into nursing homes, but the effort continues to be plagued with problems.

This month, Florida and Arizona said they want to reopen nursing homes, but they have yet to explain how they will do so safely given shortages in equipment, staffing and testing.

The situation is especially difficult in Goerke’s state, Georgia, which rushed this spring to reopen tattoo parlors, hair salons, movie theaters and restaurants. Even as the state had the country’s highest rate of new cases, Georgia Gov. Brian Kemp, a Republican, pursued a weeks-long lawsuit to stop Atlanta from requiring masks and only dropped the case last month.

Desperate for help, Goerke sent a letter to the governor two weeks ago. “I am Denise’s spouse, caregiver, and advocate,” he wrote. “I believe the state of Georgia can help my family, and others like mine.” He pleaded for rapid testing in nursing homes. He proposed convening a task force and offered suggestions. He begged the governor to rescind his emergency rules putting facilities on lockdown.

As long as they remain in place, there is only one way Goerke will be able to hold his wife. The rules include one exception for families to enter nursing homes: for deathbed visits.

‘I’ll be back'

As Goerke and the rest of Denise’s family wrapped up their visit at her door, they talked about what they’ve already lost.

Goerke recalled the last time he had heard Denise laugh. It was four months ago during a video call just after the nursing home had given Denise a haircut.

“I told her how good she looked, and she smiled and gave me a little laugh,” he said, grinning at the memory.

Later, in private, he would explain just how much that laugh had meant to him.

“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 said. “It’s like there’s my Denise, and for a moment, we’re back home together.”

There would be no laugh that Saturday at the doorway. The startled “hi” murmured by Denise early on would be the only response she would give.

When it came time to leave, Goerke chose his words carefully. Goodbyes were the one occasion, since the pandemic began, when Denise’s dementia now worked in their favor.

Instead of goodbye, he gently told her, “I gotta go run some errands. I’ll be back.”

For better or worse, Goerke said, his wife no longer remembered him well enough to miss him.

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Methodology

The Washington Post gathered data on select causes of death by state between 2014 and early 2020, published by the National Center for Health Statistics (NCHS), and used a model previously developed by a research team led by the Yale University school of public health to estimate the number of deaths that would normally be expected each week from March 1 to Aug. 16 The estimate takes into account seasonal variations as well as year-to-year variations in mortality levels but did not adjust for the flu. The mortality data is collected from state health departments, which report deaths at different rates. It usually takes about three weeks for death data to stabilize, but even then, it is not complete. As a result, it is expected that the numbers of deaths in the period The Post analyzed will increase as states continue reporting additional data to the NCHS. Details on the team’s statistical approach can be found on GitHub at https://github.com/weinbergerlab/excess_pi_covid/blob/master/post%20methods.pdf. The Post has published the data and methodology on GitHub at https://github.com/wpinvestigative/excess_deaths_covid19/tree/master/specific_causes.