By Ana Martinez-Ortiz
In 2016, Karen Squiers began noticing that her husband, Larry, was having trouble remembering. Three years later, in July 2019, he was diagnosed with frontotemporal dementia and early onset Alzheimer’s.
Since then, their lives began to take on a new definition of normal. Every week, Squiers would write a schedule on the whiteboard. The couple would go to the gym three days a week, Larry would go to Makerspace twice a week and on other days they’d attend programming offered through the Alzheimer’s Association.
But when coronavirus or COVID-19 came to Wisconsin, their lives shifted again. Back in March, Gov. Tony Evers issued a stay at home order, which required residents to remain at home unless they needed essentials or were essential workers.
This order has forced the Squiers household to reinvent what normal looks like and it hasn’t necessarily been easy.
Squiers explained that for Larry and for many individuals diagnosed with Alzheimer’s or dementia, routine is crucial. Since so many places are closed, Squiers has had to adapt the whiteboard schedule to more tangible goals.
She found that leaving Makerspace on the whiteboard caused frustration, so instead she changed it to garage. Now, Larry spends time tinkering in the garage, which has a limited number of tools and wood. In lieu of the gym, Squiers wrote workout.
“I’m trying to figure it out for both of us,” she said. “I’m careful not to show my anxiety or frustration.”
Still one of the hardest losses for Larry is his lack of interaction with others. The outside world provided Larry with a sense of independence and with additional stimulus, but now that those are no longer accessible, Squiers has noticed a change.
He’s declining in his capabilities, she said. While she tries her best to engage him, at times Larry is more inclined to sit in his chair and scroll through his phone.
Like her husband, Squiers has also been forced to make adjustments. She’s finding time to practice self-care while Larry is preoccupied with something else.
“My self-care has been that much more critical,” she said.
For her self-care, Squiers practices meditation. She’s also made a point to reach out to the Alzheimer’s Association, which is offering virtual programming for caregivers.
“It’s been very reassuring to have the association up and running,” she said.
Squiers said she’s already had a one-on-one conversation through the Association and is attending a virtual support group.
“Everyone looks forward to the video calls,” she said. “I think we need to see each other [even though] the situations are different it’s helpful to see each other.”
Currently, the Alzheimer’s Association is offering free virtual programming for caregivers and those living with memory loss.
For the full list of programs, individuals can visit the Community Resource Finder website
https://www.communityresourcefinder.org/ and click on the Alzheimer’s Association or they can call the hotline at 1-800-272-3900.
Wendy Betley, a senior program director Alzheimer’s Association Wisconsin chapter, said one of the biggest concerns the association has is the effect of isolation on individuals dealing with memory loss and their caregivers.
“People with memory loss have a hard time with changes,” she said. “Isolation can add to their stress levels.”
That’s one of the reasons the association has started offering virtual webinars and educational programs available on the phone and online. Groups include a men’s caregiver support group, one for caregivers of individuals in the early stages and most recently, one for family members of loved one in facilities.
Betley said that the response so far has been positive. She said that the association was able to pivot rather quickly from in person meetings to virtual ones and that there’s a possibility for virtual programming to continue once quarantine ends.
She added that the association isn’t sure what programming will look like after quarantine ends. There’s a lot of trauma there, but as always, the association will continue to respond to the needs of the community.
“Don’t feel like you have to do it alone,” she said.
While Squiers highly recommends that caregivers reach out to the Alzheimer’s Association for support, she said that friends and relatives can also make an effort to reach out. Isolation is intense for couples, especially when one is in a caregiving role.
She said that reaching out to drop off groceries, baked goods or other essentials or calling to talk with the caregiver or person experiencing memory loss is incredibly helpful.
“Small gestures to let people know they are cared for go a long way towards easing someone’s burdens,” she said in an email.
If you or a loved one is in need of support, visit https://www.communityresourcefinder.org/ and click on the Alzheimer’s Association or call the hotline at 1-800-272-3900 Additional resources can be found at alz.org and Alzconnected.org.