One man fights from doorway of nursing home to save his wife
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| Maybe, Dan Goerke figures, if he can talk to
his wife, Denise, from the doorway of her nursing home near Atlanta,
that will be the spark that keeps her alive. (Kevin D. Liles for The
Washington Post) |
By William Wan
If only Dan Goerke could hold his wife’s hand.
Maybe she would talk again. Maybe she would look at him and smile as she used to. Maybe she would eat and stop wasting away.
Since
the pandemic began, Goerke’s wife, Denise — 63 years old and afflicted
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 staggering U.S. deaths caused directly by the novel coronavirus,
more than 134,200 people have died from 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.
Excess deaths due to Alzheimer’s and dementia
A
Washington Post analysis of weekly deaths data from the CDC found about
13,200 excess deaths due to Alzheimer’s and dementia since March.
Overlooked amid America’s war against the coronavirus is this reality:
People with dementia are dying not just from the virus but from 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,” said
Goerke, 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.
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| Denise, 63, has quickly deteriorated in
isolation and can no longer recognize her children or husband. Dan, 61,
takes his mask off during a visit, hoping it will help her remember him.
(Kevin D. Liles for The Washington Post) |
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 now 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
America has counted tens of thousands of excess deaths since the pandemic began. These are deaths not recorded
as due to the coronavirus and occur from causes such as hypertension or
sepsis. But they are occurring at much higher levels than in the past.
Many of the deaths are likely undiagnosed cases of coronavirus, experts
say, while others are likely due to indirect effects from the pandemic —
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 suddenly 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 D.C. 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 aren’t 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.”
Two years after her diagnosis, Denise and Dan traveled in 2014 to Washington to advocate for Alzheimer's research. (Dan Goerke)
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 wasn’t 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.
State
pandemic rules forbid Dan from entering his wife's nursing home. He has
tried to make her feel less alone through frequent calls and videos.
(Kevin D. Liles for The Washington Post) Denise’s
nursing home had long struggled financially, even before the virus.
Now, it was suddenly fighting to buy protective equipment and retain
staffers afraid of falling ill.
Only a tiny portion of the U.S. population lives in nursing homes, yet nursing homes have accounted for roughly 40 percent of U.S. deaths from covid-19, the disease caused by the 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 began scheduling window visits for
families. That’s when Goerke saw the full extent of the pandemic’s toll.
The bright blond hair he used to comb was dull and sparse. Her face 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 wouldn’t 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.
For
the first few months of the pandemic, one of the only ways Dan could
see his wife was through a window. But as she declined mentally, she
stopped recognizing him and simply sat with a vacant stare. (Dan Goerke)
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 the hope 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.
Everyone
is suffering in some way these days during the pandemic. But it feels
at times, Goerke said, as though 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 about reopening schools and protecting the economy, there’s little urgency about the plight of people like his wife.
Countries like the Netherlands have safely reopened their nursing homes without any increase in coronavirus cases by providing ample protective equipment, testing and rigorous protocols.
But
in the United States, little of the trillions 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 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 (R) 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 — deathbed visits.
Dan
does most of the talking during the couple's doorway visits. These
days, he is grateful and treasures even the smallest response from
Denise. (Kevin D. Liles for The Washington Post)
‘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 FaceTime 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 earlier
by Denise turned out to be her only response.
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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| Denise and Dan in 1997, shortly after the couple met and fell in love. (Dan Goerke) |
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