Living with Alzheimer’s
Pandemic heightens need for support, education
Watching the acceleration of his wife’s Alzheimer’s Disease during the COVID-19 pandemic, Mel Millsap of Karlsruhe decided they would follow their motto to make the most of life. Last fall, he and his wife, Lisa, took a foliage tour into Minnesota and Michigan, stopping along the way for about a half dozen interviews with broadcast media to spread the word about the disease and the support provided by the Alzheimer’s Association.
Lisa Millsap had been diagnosed with early onset dementia in 2014, which was determined to be Alzheimer’s in 2015, the year she turned 55.
“The first four years, it was really gradual,” Mel Millsap said of the disease’s progress. “So the first four years we were able to do a lot of things we used to do before, but this last year it’s just went downhill rapidly.”
That experience of sudden decline during the pandemic has been common for individuals living with the disease, according to the Alzheimer’s Association. Social isolation, reduced access to physicians and healthcare and disruption of steady routines have been some of the factors behind those experiences.
People in assisted living or memory care units often have declined more quickly and found themselves requiring higher levels of care earlier than they might have otherwise, said Audrey Williamson, Minot, regional care consultant for the Alzheimer’s Association.
For individuals with Alzheimer’s or dementia in care facilities, the separation from families took a toll, she said. Window visits or remote visits using technology don’t work as well for people with dementia illnesses because of their difficulty in absorbing the concept that the person on the screen or other side of the window is a family member, she said.
Although socialization is important to slow the progression of the disease, care facilities have had to limit not only family visits but other activities, even group dining, that give residents that socialization, Williamson added.
“Everyone’s routine has stopped, and routine is crucial with this disease,” she said.
Prior to the pandemic, Lisa Millsap had been attending day services at Edgewood in Minot during the week while Mel Millsap worked at his job at Minot Air Force Base.
“I dropped her off there at 6 a.m. and I picked her up at about 4 o’clock in the afternoon, and Lisa loved it. I loved it,” Mel Millsap said. “That service was amazing, and it was really good for Lisa to be around a lot of people. Socially, it was really good for her.”
Due to the pandemic, Edgewood was forced to end the day service. Since then, Lisa Millsap’s condition has deteriorated physically and to a lesser extent cognitively. For months, Mel Millsap had been unable to go to work but remained at home as Lisa’s primary caregiver.
Only recently has Millsap been able to formulate a new plan that provides for a caregiver to come into his home so he can return to work. The Millsaps also have had a few people step up to help, including a granddaughter and Lisa’s sister in Oregon.
“That’s our small team. We’re going to do our darndest to take really good care of Lisa and keep her home,” Mel Millsap said.
Even if things aren’t the same as they had been, Mel Millsap tries to keep as much familiarity in his wife’s routine as he can. He and Lisa still dance, which has been one of her favorite activities. He takes her on drives to enjoy the sunshine, nature and activity around them.
“We’ve always been really active and we’ve traveled a lot,” Mel Millsap said. “It’s very important to try and keep doing that as long as we can together.”
Married 41 years, they have traveled to Europe and much of the United States.
“One of the things we love so much about each other is we just love to get out and just make the best of our lives,” Mel Millsap said.
Their media blitz last fall across Minnesota and into the Upper Peninsula of Michigan included their granddaughter and Lisa’s sister who flew in to meet them in Duluth.
“It wasn’t easy because every time we turned around we were having to do a news story, but it was awesome that we did it just to get the word out and fight for everybody, because this disease is bad,” Mel Millsap said.
“With this disease, there are so many losses. It’s an ambiguous loss,” Williamson said. “There’s a loss with everything – a loss with the ability to drive, the ability to cook. What is not as talked about really with this disease is that you experience so many losses, and I do think that this pandemic has amplified those losses and really didn’t prepare some people for the losses to come.”
The Alzheimer’s Association seeks to help individuals and caregivers through education and support.
“We have community education with many different classes that help form an understanding of this disease and really make the journey the easiest it can be, and then we do care consultations with families, mostly with the caregivers,” Williamson said.
The association has been offering support virtually these days. Williamson said that has opened up opportunities in the Minot area for residents to access a wider variety of support groups, including groups focused on earlier onset Alzheimer’s.
“That’s been a good thing I hope that we’ll continue,” Williamson said, noting the virtual formats can augment the in-person events available through the local chapter.
Without the Alzheimer’s Association, his family’s ability to cope with the disease would have been more difficult, Mel Millsap said. The association helped connect them with resources, particularly the state’s respite care program,
“They’ve worked hard. Definitely rolled their sleeves up for us,” Millsap said, adding that no one facing an Alzheimer’s diagnosis should be afraid to ask for help. “Get ahold of your local Alzheimer’s chapter, and start asking questions, and don’t be shy, because it’s not going to get easier. It is just going to get harder.”
Wendy Richards, Lisa Millsap’s sister, said Alzheimer’s is different for everyone, but the Alzheimer’s Association can help in preparing for what could lie ahead.
“There is plenty to plan for, and there’s just no ‘early enough’ time, because you actually don’t know what you need to plan for and what you’re not going to have to plan for. I think it’s better to have the next steps kind of in mind before they arrive,” she said. “There really is a lot to be better informed about as early as possible.”
Williamson said it’s crucial to get support and education because the disease takes a village.
“If you have a good support system and you have that education, then you can sit back and you can just take the days in and really enjoy the moment of the day,” she said. “There’s a lot of life still to live, and there’s a lot of hope in the day.”
To access resources of the Alzheimer’s Association, visit alz.org/covid19 or call the 24/7 Helpline at 800-272-3900. Information about the Minnesota-North Dakota Chapter’s COVID-19 dementia support group can be found at alz.org/mnnd/helping–you/calendar.
Alzheimer’s Disease in ND
– There were 74 more deaths from Alzheimer’s and dementia in 2020 in North Dakota than the average over five years, for an 11.8% increase.
– 403 North Dakotans died from Alzheimer’s in 2019, the third leading cause of death in the state.
– Recent national reports indicate more than 40% of COVID deaths are linked to long-term care settings. Also, 48% of nursing home residents have dementia and 42% of individuals in residential care communities, including assisted living facilities, have Alzheimer’s or another dementia.
– In North Dakota, 15,000 people aged 65 and older are living with Alzheimer’s, which doesn’t include other types of dementia or individuals going undiagnosed.
– An estimated 16,000 North Dakotans will be living with Alzheimer’s in 2025, a 6.7% increase from 2021.
– North Dakota has about 19,000 family members serving as unpaid caregivers for individuals living with Alzheimer’s. The value of that care is estimated at $521 million.
Source: Alzheimer’s Association