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People Caring For Loved Ones With Dementia See New Challenges In A Pandemic

May 27, 2020 Gail Brown Delores Brown
Provided by Gail Brown

It’s not just parents of young children trying to balance caregiving with other responsibilities during this pandemic. People whose loved ones suffer from dementia are also finding themselves under increased stress. Adult day centers are closed to limit the spread of the coronavirus. Many therapists and other support staff no longer offer in-person visits. And people with Alzheimer’s or other cognitive impairments may not realize why masks are necessary, much less remember the explanation from hour to hour.

Gail Brown is the primary caregiver for her mother, Delores, who has Alzheimer’s. She knows those challenges well.   

“At this point, she does not understand what’s going on with the mask,” Brown explained as one example on Wednesday’s St. Louis on the Air. “We went over to see my sister, and my sister came to the car and she had on a mask, and my mother said, ‘Take off that mask.’ She wanted to see her face and didn’t really understand that.”

Amy Sobrino, a program services coordinator for Memory Care Home Solutions, said she’s seen similar reactions from many families she works with. But staffers can offer tips and techniques that work even a pandemic.

“One of the biggest rules we talk about with communication with our clients is that we can’t rationalize and reason with someone living with dementia,” Sobrino explained. “It’s a lot of ‘in the moment,’ and the facts and information don’t necessarily matter. It’s challenging during this time, because if we’re trying to present the facts and say, ‘We can’t go outside, you have to wear a mask, you have to wash your hands,’ it might not make as much sense as if we just help someone by saying, ‘Oh, I’m going to wash my hands now. Here’s soap for you, too.’ Rather than trying to explain it, we’re just doing it.”

Listen:

Also the president of Brown-Kortkamp Realty, Brown previously had the same caregiver role for her late father, Elisha, who died in 2017. It was while caring for her father that she was connected to Memory Care Home Solutions, which she calls a “lifesaver.” The nonprofit organization works to support people whose family members or loved ones live with dementia. That means connecting them with in-home services, helping them make their living situations safer and providing counseling. 

Sobrino stressed that the agency’s focus is as much on the “care partner” assisting someone with the disease as the person suffering from it. That’s become even more important as outside help has been extremely limited in recent months.

“COVID-19, this has been a chaotic and uncertain time for everyone, but especially for our clients. It throws that uncertainty into each day even more,” Sobrino said. “And that’s why with all of our clients, we’ve really emphasized, ‘You’re doing a great job caring for your loved one with dementia, but you need to care for yourself too and make sure you are just as important in your health and your well-being.’” To that end, the nonprofit connects caregivers with respite options and online support groups, she said.

The conversation included pre-recorded comments from Judy Willett of Creve Coeur. Willett is the caregiver for her husband, who has dementia. 

“I like to control things, and I have to step back from controlling this,” Willett explained. “Just taking as much step by step, and being able to disengage yourself — but that’s really hard when you’re working with a loved one.”

Brown seconded that thought. “You have to surrender to them as well, go into their world,” she explained. “It’s easy when you see the person, thinking you want to bring them into your world and tell them what’s right and what is wrong. … But you have to go with the flow and realize that it’s not going to be a perfect day. 

“The things that you planned, don’t be upset when plans don’t go your way, because they won’t. But you just have to take a deep breath and go with it.”

St. Louis on the Air” brings you the stories of St. Louis and the people who live, work and create in our region. The show is hosted by Sarah Fenske and produced by Alex Heuer, Emily Woodbury, Evie Hemphill, Lara Hamdan and Joshua Phelps. The audio engineer is Aaron Doerr.

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Sarah Fenske joined St. Louis Public Radio as host of St. Louis on the Air in July 2019. Before that, she spent twenty years in newspapers, working as a reporter, columnist and editor in Cleveland, Houston, Phoenix, Los Angeles and St. Louis.

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