VALLEY PARK — After the COVID-19 pandemic arrived here and closed nursing homes to visitors, David Hill made his wife Julie’s window at Gardenview Care Center her “window to the world.”
Julie Hill was diagnosed with Alzheimer’s in 2014 and was mostly nonverbal. David Hill would stand by the window, call her phone and talk her through pictures of their grandchildren, of their family vacations to Florida, and of the youth sports business, Kids Sports World, they ran together for 20 years.
“It’s really hard to tell what is working in the mind of an Alzheimer’s patient,” said Hill, 75, of Kirkwood, “but I know there was always a spark in the back of her mind, and that when she found it, she could at least see it through that window.”
Hill had visited his wife of 40 years nearly every lunch and dinner since she moved into Gardenview in July 2019. But on March 11, 2020, he walked up to find a notice on the door that federal regulators had barred visitors to limit the spread of the coronavirus, which was especially dangerous to elderly patients.
Day by day, David Hill noticed his wife’s health worsen as she ate less and slept more, he said.
Julie Hill died Dec. 2 at age 72, with David by her side, three days before her 73rd birthday. Though she had tested negative for COVID-19 a week prior, a second test confirmed she had been infected. Her health, however, had been declining for months because of the isolation, Hill said.
“What I know really hurt and affected Julie’s health is COVID seclusion,” he said.
Tina Zinser Henson saw a similar decline in her mother, Nelda Zinser, after Centralia Manor nursing home in Centralia, Illinois, closed down March 12, on Zinser’s 71st birthday. The night earlier, Henson and her family had bought a cake decorated with yellow roses, Zinser’s favorite.
Tina’s father, Ron, had visited her mother every day at the home. Though Zinser was nonverbal, she loved to listen to gospel music, which evoked her youth in the church choir in her hometown of Kinmundy, Illinois.
“She still knew when the music was playing and when we were there,” said Henson, of Germantown.
But after Zinser was isolated in her room, she stopped eating and slept constantly, Henson said.
Zinser died Sept. 9 at age 71, with her husband, Ron, by her side.
More than 42,000 Alzheimer’s and dementia patients died in 2020, an increase of about 16% over the average death rate of the last five years, according to a recent report by the Alzheimer’s Association.
In Missouri, deaths increased by 20% — 1,037 more deaths — over the average death rate of the last five years. Illinois saw 1,740 more deaths, a 17% increase.
Preliminary data suggests the deaths are due in part to the disproportionate impact of the virus on nursing homes, where a majority of residents are patients with Alzheimer’s or dementia, according to the report.
The isolation the pandemic forced on homes harmed residents by cutting off the social engagement with family and friends that health experts say can delay cognitive decline.
“Social, mental and physical activity are so important to preventing further progression of Alzheimer’s disease,” said Dr. Beau Ances, a neurologist with Washington University in St. Louis.
The impact of isolation on Alzheimer’s patients’ physical and mental health won’t be fully understood until studies are done, Ances said. Researchers are already planning tests to measure changes over the last year in the brains of Alzheimer’s patients, he said.
“But we do know that the brain starves for different kinds of communications and interactions with people,” Ances said.
That includes physical touch — a hug or kiss from a family member — that is important for Alzheimer’s or dementia patients who can no longer communicate verbally.
Families of Alzheimer’s and dementia patients should proactively lobby long-term care facilities to set up regular communication lines with their relatives, Ances said.
And they should try to diversify their communication, staggering phone calls and also sending cards or other visual aids like drawings by young grandchildren, he said.
“One family member can call in the morning, another in the evening,” he said. “That kind of routine is helpful. Art work, cards, stuffed animals — if they have something they can hold on to, or feel like they’re taking care of, that also helps stoke memory and it’s a good talking point to help communication.”
Henson and Hill said they understand that nursing homes had to close to visitors to try to keep the coronavirus out, and that both nursing homes made great effort to keep families in touch with their loved ones.
But there was no replacement for hugging her mother or holding her hand, Henson said.
“When we were able to talk to her and touch her hand and feel her squeeze our hand back, it was like we were feeling the smile on her face,” she said.
Hill now visits his wife every day at Saints Peter and Paul Cemetery, where she was interred in a mausoleum. During a visit in late February, her resting place had yet to receive a plaque with her name.
He shares with her stories of their family, or their visits to the Captiva beaches in southwest Florida. There, Julie would grab a glass of wine, David a fishing rod, and their daughters would play in the sand while they all watched the sun set.
“I try to tell her every day of the wonderful times she did have,” Hill said.
When he was at her bedside, David Hill would look out the nursing home window and see visiting families standing where he had been.
“I wanted to do what I could do to help the people on the outside who weren’t with their loved ones,” he said.
He volunteered for the Johnson & Johnson vaccine trial at Washington University and received his vaccine trail in mid-November. After federal regulators approved the vaccine for distribution last month, David was told that the shots he received during the study were the real thing, and that he’d been fully vaccinated.
In recent weeks, COVID-19 infections at nursing homes in Missouri and across the U.S. dropped dramatically after federal and state officials vaccinated more than 1.2 million nursing home residents. On Wednesday, the Centers for Medicare and Medicaid Services declared it safe for nursing home residents to get hugs again from family and for all residents to enjoy more indoor visits.
Hill said he is glad.
“That’s a wonderful feeling.”
In this Series
A year of the pandemic, and its impacts on hospitals, government, nursing homes and residents, and health departments
- 6 updates