Ania Maldowska-Leek used to ask her husband, David, to return the cart they borrow to bring in groceries to their apartment, but now that’s too risky. He might get lost in their Federal Way building, or he’ll forget his electronic key card and get stuck outside. He has a cellphone, but he might not remember to turn it on.
So, like much of her time during the COVID-19 pandemic, she returns the cart herself, alone.
David has Alzheimer’s disease, the most common form of dementia. The 70-year-old former psychoanalyst forgets that there’s a pandemic, so he doesn’t understand the need to wear a mask. He likes to say hello to kids at the park, but he doesn’t know how to keep a 6-foot boundary. He enjoys walks, but sometimes it’s raining too hard, and he gets quarrelsome when he’s isolated in their two-bedroom apartment.
Meanwhile, Maldowska-Leek is one of the 350,000-plus unpaid family caregivers in Washington supporting a loved one with Alzheimer’s or another form of dementia during a pandemic that is particularly dangerous for such people — typically in the 65-and-older age group, forgetful of masks and social-distance protocols, often needing someone close by for day-to-day activities.
Still, she feels alone.
“I just want to escape it, and this is where, if you live together and you are a spouse, there is really nowhere to escape,” Maldowska-Leek said. “Especially now.”
Everyone has felt the impacts of the coronavirus crisis in different ways — feelings of isolation, worries about finances and questions about the future among them. But the unique factors that surround caring for loved ones with cognitive decline are exacerbated, or contrasted by, the pandemic.
Those who work with people with Alzheimer’s and other forms of dementia say they’ve seen burnout among caregivers after more than two months of Washington state’s stay-home order. Resources for respite, like adult day programs, are gone, and daily routines — people with memory loss are more likely to thrive with familiarity — are wiped out.
“You put the cognitive issues on top of proximity in general, and disruptions in schedules and things we do to manage stress,” said Dr. Kristoffer Rhoads, a neuropsychologist at Harborview Medical Center. “It’s a rough time for families.”
A majority of people with Alzheimer’s and dementia receive care in their homes, according to the Centers for Disease Control and Prevention. About two-thirds of the people who care for them are women, and a quarter of the caregiving group is in the “sandwich generation,” which means they are responsible not just for a person with dementia, but for someone under 18 as well.
The caregivers provide help for a loved one, like a spouse, parent or sibling, or someone in an “adopted family” role who has taken on the role of care partner. About 85% to 90% of Rhoads’ clients have a family caregiver, he said. The rest don’t have any immediate family in the area and have to rely on some form of home health care, though that’s becoming increasingly difficult for that group because of the pandemic, he added.
Resources or other help isn’t available, even as other things previously shut down by the state’s stay-home order reopen. Caregivers have to weigh the risks of bringing in nurses or other home help, and some providers aren’t facilitating any home visits. Adult day care programs, which are offered to relieve caregivers and provide participants with social interaction and activities, have been closed.
In Bothell, the Northshore Senior Center’s Adult Day Health program ran for five hours, five days a week, for about 45 adults each day. The program had nurses, social workers and occupational therapists on staff, and provided adults with socialization and physical activities.
“Even for some folks further along with dementia, being around people and being in a regular routine was able to create a better experience for someone,” said Judi Pirone, the center’s director of health and wellness.
The center closed in early March. Pirone acknowledges they’re “definitely not technical people,” but the program’s coordinators have led activities on Zoom like seated yoga, sign language class and Friday bingo.
Still, Pirone worries about the caregivers and their health. Without a break, they’re tired, and lack of interaction brings more stress for everyone.
“Like everybody else, nobody has the answer,” she said. “As time goes on, a lot of our folks will have some more decline, which will then become difficult for our caregivers.”
Even pre-pandemic, assisted-living and memory-care facilities were often out of reach for families, because they cost thousands of dollars a month for room, meals and care. Even if she could afford to move her husband to a facility, Maldowska-Leek likely wouldn’t be able to find an open spot — facilities have gone on lockdown as they’ve become the epicenters of COVID-19 deaths.
Kara Hamilton took her mother out of her assisted living facility in southwest Washington earlier this year because they were planning a cruise vacation. When she had to cancel the cruise, she opted to have her mother live with her in Silverlake, Cowlitz County, until she feels it’s safe to move her back into the facility. Her mother is 84 and has had dementia for more than a decade.
Hamilton wakes up every morning and brings her mother her medication, then they have breakfast. By the time she’s finished her cheese-and-mushroom omelet and fruit, about an hour and a half has gone by — “everything takes a long time.” She helps her mom get dressed and prompts her to brush her teeth and hair, then they go exercise together in the garage, with Hamilton on an elliptical and her mother on a recumbent bike. They watch flash mob dances on YouTube. Her mom loves them.
But a man came by to mow their lawn, and her mom kept trying to come up and say hello. She feels fine wearing a mask, but doesn’t connect that with the need for social distancing. She doesn’t remember to wash her hands.
For Maldowska-Leek, her caregiving duties have been manageable. Her husband can still walk and eat on his own, and he has a newfound talent of writing poetry. Sometimes Maldowska-Leek forgets that her spouse has Alzheimer’s, until she finds him washing dishes in cold water with no soap and a tiny sponge, or she realizes he’s picked the same shirt to wear that he wore yesterday.
But most time for herself is gone. Before the state’s stay-at-home order, the couple was able to see their daughter, who lives in Seattle, and watch their toddler grandson twice a week. But their daughter works as an EMT and all their visits have been halted. The P-Patch where she likes to garden is closed — that really hurts, she says, because it’s planting season.
“It’s just getting harder to be caring and loving and alert for everything that is happening,” she said.
Alice Allen-Redfern, a care consultant for the Alzheimer’s Association of Washington, said she’s seen similar cases of caregivers feeling overwhelmed with information, especially as more is learned about the conditions that increase the risk of acquiring COVID-19.
“It’s such an extra effort for caregivers to remind their loved ones about an extremely scary situation, and they have to do it literally every single day,” Allen-Redfern said. “It’s hard for someone who isn’t a caregiver to grasp how hard that is.”
Rhoads, the Harborview neuropsychologist, has recommended to caregivers that they capitalize on their loved one’s long-term memory, which often remains longer than their short-term memory. One client talked about digging out old photos and putting them in albums as an activity for the day.
During his sessions, he also acknowledges to caregivers that it’s OK for them to feel stressed — it’s unavoidable, but not unmanageable.
“If that means going for a walk, or even going to the bathroom and crying your eyes out for 10 minutes, you have to give yourself time for that,” he said.
Hamilton’s mom doesn’t worry about the pandemic, so Hamilton feels like she’s shouldering the concerns for both of them. She’s worried about a potential second wave of COVID-19 cases in the fall — what happens then? She’s not sure when her mom’s facility will feel safe again.
“As long as COVID is here, assisted living seems to be a target,” she said. “Even if she goes back and doesn’t get COVID, they are on lockdown all the time.”
For now, she’s enjoying her time with her mom, even when it’s difficult.
“One time, we were watching a movie and she looked at me and said, ‘You’re my best friend,'” Hamilton said. “And I said, ‘You’re my best friend, too.'”