Dementia patients hit hard by pandemic
Caring for an already fragile population even more challenging now
Kathryn Kosilla last glimpsed her husband of 62 years through the window of the dementia unit of a locked-down nursing home, where he lay unconscious as nurses held his hands.
Wallace “Wally” Kosilla, 82, would soon be dead of COVID-19 complications. For this tough former Marine, it was a swift final battle following a long struggle with Alzheimer’s disease.
The father of four and grandfather of 10 who lived in Windsor for nearly five decades and loved English bulldogs and tending to his garden is one of 3,868 people in Connecticut to die of coronavirus complications as of Friday afternoon.
The virus has raced through end-of-life facilities: state data shows 2,398 confirmed and probable COVID-19 deaths in nursing homes through Wednesday, the most recent statistics available. These fragile patients now account for more than 60% of all COVID-19 fatalities in Connecticut.
The state has not released an accounting of how many deaths involve people with dementia. But nearly half of all nursing home residents have been diagnosed with Alzheimer’s or
another form of age-related cognitive decline, making this population among the hardest hit by the coronavirus.
“This is a really big challenge,” said Christy Kovel, director of public policy for the Alzheimer’s Association’s Connecticut chapter. “No one was prepared for a pandemic of this proportion.”
The connection between Alzheimer’s, a degenerative brain disease that causes problems with memory, thinking and behavior, and COVID-19 is not fully understood. A recent study found a genetic link between dementia and severe cases of COVID-19 in some patients, providing a possible explanation for why the virus has been so lethal to people with Alzheimer’s.
But genetics aren’t the only factor. Most nursing home residents have underlying medical conditions that make them more vulnerable to life-threatening coronavirus complications.
“The patient population [is] very significantly afflicted with co-morbidities — heart and lung disease, and very importantly, advanced dementia,” Dr. Richard Feifer, medical director for Genesis Healthcare, said in a conference call with reporters earlier in May. (Genesis owns several Connecticut nursing homes, including Kimberly Hall North in Windsor, where Wally Kosilla lived, and died.) “These are patients that have no reserves. A minor respiratory illness, not to mention a virus, is deadly. Your average nursing home has lots of frail elderly patients, but Kimberly Hall North [has] the frailest of the frail. … They’re more vulnerable to catching the virus and dying from the virus.”
Long-term care facilities provide an ideal environment for the deadly virus to flourish. Also, social distancing, scrupulous handwashing and other protocols designed to reduce the risk of exposure can be extremely challenging for people with memory loss.
“You tell them to remember to wash their hands for 20 seconds, but you’ve lost them at the word ‘remember,’” said Kristin Cusato, spokeswoman for the Alzheimer’s Association of Connecticut. (The association has prepared a resource guide for families of people with dementia and provides online support groups.)
The wandering tendencies of many Alzheimer’s patients also can complicate efforts to keep the virus from spreading.
“They have trouble understanding direction, and they have trouble understanding risk,” Feifer said. Confining patients with dementia to their rooms and requiring them to wear masks can be disorienting, he said. “Patients with dementia are often confused and scared,” he said, “so the risks of [the virus] spreading in a nursing home [is] much higher, because of the dementia diagnosis itself.”
‘A very long ride’
It’s known as “the long goodbye,” the wrenching period between an Alzheimer’s diagnosis and death.
For Judith Jursch of East Hampton, it began about 15 years ago. Jursch, an elegant woman who favored feminine clothes and expensive perfume, was diagnosed shortly after she retired from her job as a direct care professional at the Connecticut Valley Hospital.
“Everyone loved her,” said her husband, Ronald Jursch. “She was a joy to be with.”
They met at the psychiatric hospital; they were coworkers before they were spouses. Ronald was drawn to Judith’s effervescent personality and tenderness toward the patients. She would sometimes walk through the halls of CVH blowing bubbles.
It was a great life, filled with ski trips, summers at the beach and dinners out. But as her disease progressed, Judith’s world became more limited. By the time the pandemic hit, she was “100% disabled, mentally and physically,” and living in the Marlborough Health and Rehabilitation Center, her husband said.
“Her level of awareness was minimal, to put it mildly,” Ronald Jursch said. “There were small pockets of awareness, which you came to live for.”
Before the facility locked down, he visited twice a day, feeding his wife lunch and dinner, and joking with the staff.
In April, Judith became infected with the coronavirus and, over the course of two weeks, her condition deteriorated.
Ronald advised the nursing home to administer palliative care only.
“She was on the edge of needing hospice anyway. … Her body was there, but her mind was almost gone,” he said. “You’re caught in a dichotomy. You don’t want to lose them, but on the other hand, how long are you going to drag this out when there’s nothing left of them?”
Judith Jursch died May 3. She was 77.
“It’s been a very long ride,” Ronald Jursch said last week. “You are saying goodbye as your loved one slowly deteriorates. This disease, it robs them of themselves.”
“Then,” he added, “this COVID comes along and it’s like someone hits you on the back of the head with a hammer. … You’re on the ground and someone hits you again. It’s a nasty, nasty, lethal thing. It takes the elderly. It takes those who are compromised physically, and it has a field day with them.”
‘It must have been very frightening’
Allen Tinkham’ s COVID-19 diagnosis came in early April, shortly after he got out of bed in the memory care unit at The Atrium at Rocky Hill and struck his head. “They noticed he had a raised temperature,” said his wife of 67 years, Cynthia Tinkham.
After Allen arrived at Hartford Hospital, a chaplain contacted Cynthia to explain that he could not comfort her husband due to restrictions on visitation.
A native of Mattapoisett, Mass., and a lifelong Red Sox fan, Allen Tinkham spent his life ministering to others. Ordained by the United Church of Christ, he served churches in Brimfield, Mass., and Niantic before settling into a long tenure at the Church of Christ Congregational in Newington.
“He was a magnetic person, and he loved people,” Cynthia said.
The couple lived in Newington and raised six children together before Allen Tinkham was diagnosed with Alzheimer’s in 2015. For a time, Cynthia took care of him at home, but eventually it became too much and he moved into The Atrium.
Being unable to visit him in the hospital was excruciating, Cynthia Tinkham said. “That was the hardest thing for us, to not be able to be at the bedside just to hold his hand,” she said. “I don’t know if he had that much comprehension about what was happening. He might have had a sense of being in a strange place surrounded by people in masks and all these machines around him. … It must have been very frightening.”
After his death on April 23 at the age of 91, Cynthia Tinkham received a condolence card from a woman who had belonged to the church in Niantic, more than five decades earlier. “She wanted to thank him for all he did to strengthen the church,” Cynthia said. “I was just floored.”
‘Pops is just empty right now’
Wally Kosilla’s family first suspected something was amiss about 15 years ago, when he would repeatedly ask what time his grandson’s soccer game started.
Soon, his personality changed. The man who took solace in the quiet of the woods, enjoyed feeding wild birds and loved to entertain his grandchildren by playing harmonica was replaced by an irritable scold prone to outbursts.
“It just got worse and worse, and we realized it was the dementia,” his wife, Kathryn, said. As his disease progressed, she would tell her grandchildren, ”Pops is just empty right now. It was just vacant stares the last year or so.”
He entered the dementia wing at Kimberly Hall North in December and fell ill with the virus in April.
“It all happened fairly quickly,” Kathryn Kosilla said. “They called at 7:30 in the morning to say his oxygen level was falling and so was his respiration. He passed away very quietly, and we had him cremated.”
The couple met in grade school in New York; he played the trombone, and she was a twirler. “We had a good, long life together,” Kathryn Kosilla said.
Wally Kosilla was enormously proud of his service in the U.S. Marine Corps, and his wife still has his old uniform, awards, figurines and other military memorabilia.
“He was a great guy, and so many people respected him,” Kathryn Kosilla said. “It’s a horrible disease.”
It was unclear whether she was referring to COVID-19 or Alzheimer’s.