Every Sunday, Randy Rush helped his wife, Tami, into their RAV-4. They'd drive away from the memory care center where Tami lived and where the staff would dress Tami up for her date night. And every Sunday, the couple would find a new pizza place in Colorado Springs.
Randy started the tradition in 2017. He wanted to give Tami a high quality of life and show the world that you don't hide Alzheimer's patients. He first noticed changes in 2009. At first, Tami was unusually irritable about her job as a registrar at Mountain Ridge Middle School. Then she started forgetting why she came into rooms. She'd handled the family's finances since their marriage in 1994, but now she struggled to keep up.
At 49, Tami was diagnosed with Alzheimer's.
The disease, Randy would later write, "was robbing and stealing from us every dream and plan we had for our 'golden' years." In a drawer in his office, Randy kept a file of future dreams, a bucket list the couple had compiled together years before. Nearly every goal was impossible now.
Between when symptoms emerged in 2009 and when the couple started their date nights eight years later, Tami deteriorated. She couldn't walk or stand on her own. Eventually, she qualified for hospice. Randy was determined to take Tami out into the world, to improve her quality of life, to show that she didn't have to be hidden away with her disease. The routines helped: Tami stabilized, Randy said.
"Then comes March 2020," he said in an interview.
Randy got COVID almost immediately, in the same early outbreak that led to Colorado's first fatality. He was quarantined and isolated; he wouldn't see Tami for five and a half months. The seven women who'd volunteered to help him feed Tami and socialize with her weren't allowed into the facility. Even when he could later see her in person, she didn't recognize him through his mask.
"She began to not make it to lunch, she was sleeping more, losing weight, and just overall cognitive decline," Randy said. She began having more seizures. She struggled to hold her head up. Her weight slipped below 100 pounds.
"It was five and a half months of not seeing my wife, not touching my wife," he continued. "Not seeing her was just brutal, and I was willing to do anything that was reasonable and safe to be with her again."
He was so desperate to see her, and to stop the rapid decline unfolding in a building he couldn't enter, that he tried to get a job in the memory care unit. That didn't pan out, so in late summer 2020, he moved Tami to a new facility. The risk was great: The staff warned that Tami's decline could accelerate and she could die.
She survived the move, and Randy was able to begin feeding her pizza again. There were two and a half months of "really wonderful times" with Tami, he said. She was responsive. There was a spark of her, the woman he'd married, still there. But it was fleeting: On Nov. 12, 2020, barely a week after her 60th birthday, Tami died.
Tami had Alzheimer's, and Alzheimer's is a fatal disease. Between 2015 and 2019, an average of 3,633 Coloradans died annually from the disease, which is one of the leading causes of death in the United States. But 2020 was different: Nearly 800 more people here died of the disease than past years would've suggested. It was "a significant increase in deaths due to Alzheimer's disease and dementia over the past year," said Kirk Bol, the manager of the state's Vital Statistics Program.
"I’ve written more condolences cards in the past year than in any annual period I can remember," said Samantha Holden, the medical director of the Memory Disorders Clinic at the University of Colorado's Anschutz Medical Campus.
Holden, family members and other provider said there had been a noticeable acceleration in the progression of Alzheimer's across patients over the past year. The lockdowns forced upon facilities to stop COVID from ripping through them led to increased isolation, less socialization, more confusion and stress. Routines, critical to Alzheimer's patients, were disrupted and replaced with isolated lunches in empty rooms.
The measures taken to keep long-term care residents alive were vital, experts said, but they came with those unintended but significant consequences. Even now, it's unclear if anything could've been done different within long-term care facilities. Families begged to be let in, some residents said they didn't care if they got sick. In one of the most heartbreaking and defining moments of the pandemic, the facilities were left with little choice but to close their doors.
Holden said the chronic underfunding and understaffing at long-term care facilities gave them no options. The lockdowns were "draconian," she said, but "it's not fair to expect these facilities to do a better job without those resources."
"Other than the vaccine, it's really hard to think of a way that it could've been done with any less negative outcomes there," she said. "If the alternative is death, it's kine of like -- nothing really outweighs that."
Gregory Gahm, the medical director for senior living company Vivage, said he dealt with family members and residents who said they didn't care about the risks because "the isolation is so much worse than dying."
The phenomenon is fresh enough that hard research on it hasn't yet been published, experts said. Holden and others had anecdotal and personal accounts, but its prevalence also appears to vary: Officials from one senior living company said it was noticeable but not endemic.
But it's become common enough that Holden has seen it enough to pick up a pattern.
"I'm seeing about 20 patients a week," she said. "More often than not, if I'm seeing somebody for new cognitive changes, and I say how long as has this been going on, I get an answer of, only within the past year."
Some of that may be attributable to families being in close quarters together, which may led to loved ones noticing pre-existing declines. But many patients, and their families, are adamant that the change is new. When her clinic's seen these new, seemingly out-of-nowhere declines, Holden and her colleagues would search and test and evaluate to find an accelerant: an infection maybe, or a rare condition. But they haven't found anything.
Hard research isn't yet available, Holden and others said, though it's not hard to come up with theories. Holden said the "social isolation" of the past year is likely the most important factor. The brain, she said, "is use it or lose it." The isolation forced upon assisted-living centers to keep COVID out had the byproduct of significantly lowering the stimulation that those residents received and needed.
Jan Kleinbord, whose husband, David Mamolen, had Alzheimer's and deteriorated rapidly during the pandemic, said there were no good answers.
"You hold on and hope for the best," she said. "Lots of no-win answers, you know? My heart went out to people who had loved ones in facilities where COVID ran rampant in the facilities and the decision of, 'What do you do?' Do you take your loved one out of the facility and bring them home and then you’re faced with caretaking 24/7? The decisions are just — none of them are good."
There's good reason for those nursing home lockdowns, of course. Not only were the residents at higher risk because of their age, but those with dementia are more likely to contract and die of COVID, according to new research published in the Journal of the Alzheimer's Association. That may be because patients with dementia don't understand the need for masking or distancing.
But COVID the disease doesn't account for the increase in Alzheimer's deaths; those fatalities were caused primarily by their disease, not a COVID infection, Bol said.
Holden said it's typical for there to be "a straw that breaks the camel's back" with Alzheimer's patients. A fall, a hospitalization, a traumatic moment -- that could all "tip" an Alzheimer's patient over into a spiral. COVID, and the lockdowns and disruption it brought, may have acted as the massive straw across many patients' backs.
"This event, the stress of the pandemic, of lockdown and social isolation, worrying about yourself, about your loved ones, all of that stress we've all been under, is amplified for a brain that may already be working overtime to compensate," Holden said.
Gahm said the collective decline wasn't unexpected. For Alzheimer's patients, routines are critical. When lockdowns came, residents ate alone in their rooms, sometimes off of paper plates. That complete environmental change can be a significant blow.
But with so much going on last year, particularly for closely watched long-term care facilities, it's understandable that the phenomenon hasn't been noticed, he said. It gets back to chronic understaffing and the no-win situation facing facilities.
"People are so busy with surveys going on once or twice a month, wearing the right (protective equipment), people using stopwatches to see how long you wash your hand, did your mask come down below nose, stay 6 feet away, drink your water in the hallway," he said, referring to inspections used to ensure infection control compliance. "So much else going on, there’s very little time to focus on the big picture as a staff member."
Ben Gonzales, the public relations director for the senior living facility Fairacres Manore, said staff there had noticed more wandering. He, too, attributed the decline his facility had seen to the sudden cessation of visits and socialization. Staff turned to technology to connect families. Now that visitation is open once again, he said, "it's night and day."
"With our memory care and our Alzheimer's residents, being able to come out and see and have that contact with their loved ones, is tremendous," he said. "That physical touch was something that was missing that whole time."
In January 2020, Jan enrolled David in an adult day care program so he could have that human touch and interaction. David was diagnosed with frontal temporal dementia in 2017, after several years of warning signs, and she needed help and some respite.
The two met in Boulder in 1990, she a nurse, he a chiropractor. They'd both been invited to a dinner with a married couple; Jan still isn't sure if it was an intentional set up or a fated meeting. She'd just gotten out of a relationship in Santa Fe and had moved to Boulder for what she thought would be a year of good pay. David was interested and pursued her. A year turned into decades, the pursuit into a marriage.
David was "an incredibly smart man," Jan said, a bit like an "absent-minded professor." It wasn't unusual for him to misplace keys or a checkbook. But then, about a decade ago, he'd sit in the car and listen to music in the driveway or garage. He'd forget to turn the battery off, and a few times a week, Jan would have to help him jump his car.
The disease progressed. When she enrolled him in the adult day-care program two months before the lockdowns began, "he loved it immediately." It was warm, welcoming, loving. She signed up to have a volunteer come and spend time with David at home. Their volunteer was a cellist, and he'd play for David on the couple's porch.
Then the pandemic came. The cellist couldn't come anymore. Adult day care was done. The stimulation that Jan had surrounded David with vanished. He spent less and less time on the stationary bike she tried to get him to ride. He stopped watching TV. He wandered.
"His dementia certainly had progressed slowly over time," Jan said. "But with COVID and the stopping of all the different stimulus that he had and different situations, it really just pronouncedly progressed from March last year."
Eventually, Jan had to move David into a memory care unit in August. Visits were extremely limited. David was disrobing, crawling on the floor. Shortly after he moved in, hospice was called. Jan was allowed into the facility for the first time, in a mask and gown and gloves. She spent three hours with him.
On Aug. 31, David died. It was a day before the 30th anniversary of when they first met, at that dinner with friends in Boulder. He would be posthumously diagnosed with Alzheimer's.
"I would not in a million years have wanted David to die alone," she said.
"There are no good answers."