Caring for those with dementia can be an all-consuming and isolating job. But in the era of the coronavirus, it has become even more difficult.
“Alzheimer’s and other dementias don’t stop just because there is a virus,” said Sue Spalding, CEO of the Alzheimer’s Association Minnesota-North Dakota Chapter.
“There’s so much more stress involved for those caregivers who are dealing now with a person with dementia and perhaps they are at home with them isolated by themselves or their loved one is in a nursing home or memory care unit and they can’t go and see them,” Spalding said. “So, everything is just compounded because of this disease.”
Fourteen years ago, Mary Holcomb became a caretaker for her husband, Michael, when at 65 he was diagnosed with Alzheimer’s disease.
“Of the 14 years, I would say we had at least five to six years of pretty good. He could go to events and enjoy them. Enjoy our friends, things like that,” she said.
His Alzheimer’s worsened, sapping Michael’s will to be around friends.
“Slowly that began to not interest him anymore. He became kind of nonverbal around everybody and he’s pretty nonverbal right now,” she said. “Which is hard because I don’t get to talk to anybody all day.”
Those who run memory care units worry about COVID-19. They know telling people to social distance or wash their hands frequently likely will be forgotten.
Routine helps those with mental cognition diseases. Stay-at-home orders throw those routines off. Dorothea Harris, who directs the Culturally Responsive Caregivers group for the Minnesota and Wisconsin branch of Volunteers of America, said with limits on visits, it’s harder to calm people with dementia.
“Families aren’t coming in and out. They don’t have their regular routine or schedule. So, it’s very challenging for them right now,” Harris said.
Caregiver Mary Holcomb’s respite time is gone.
Before coronavirus concerns closed his adult day care, Michael spent four hours there once a week.
A volunteer caregiver came over for two hours on another day to give Mary a break.
“Those were my two times a week that I was able to do something, go for a walk, or grocery shop or something like that,” she said.
FamilyMeans, where Michael goes to adult day care, has sent out videos, with familiar voices and music.
“We started providing online support groups and coffee chats last week and they are steadily growing. We are doing some of both every week because caregivers do want to connect with each other, connect with our staff, see faces on the screen when possible,” said Beth Wiggins with FamilyMeans, where demand for telecoaching and consultation is as high as ever.
“And we’re being proactive about reaching out to the people we serve by telephone on a quite regular basis to make sure their needs are being met and tell them that they are not being forgotten,” Wiggins said.
Mary Holcomb has found support online. She keeps in touch with her children and new grandchild through video chats. Friends drop off groceries. Mary wants to run errands with Michael as they did before the pandemic, but isn’t taking any risks.
So they walk, “not long walks,” she said. She falls back on the music he likes. Michael sings along with Elvis Presley and Johnny Cash.
“Maybe dance together or something like that — just to make him happy,” she said.