FARGO — For a Fargo man’s family, the realms of degenerative brain disease and the pandemic collided for a difficult outcome late last year.
Ron Peterson, 82, died at Villa Maria nursing home the day after Thanksgiving, about a week after contracting the COVID-19 virus.
His daughter, Julie Kloster, said he had developed a fever.
While he didn't have a cough, he was on supplemental oxygen, wasn’t eating or drinking and was sleeping most of the time. Despite visiting restrictions, his family was able to see him before he passed away.
“In my heart, I feel like he could hear us and knew that we were there in some capacity,” Kloster said.
Karen Peterson, Ron’s wife of 57 years, said he’d been dealing with dementia since at least 2015, and Parkinson’s disease before that.
Kloster said her dad hated what was happening to his brain and body.
“So for me, there was kind of a blessing that he's free, he’s done with all of this,” she said.
During the pandemic, the U.S. Centers for Disease Control and Prevention has continued to monitor “excess deaths,” or the number of deaths above what is considered average for a certain time. An analysis of that data found deaths among people with degenerative brain diseases have increased, according to the Alzheimer’s Association.
In North Dakota, the number of deaths attributable to Alzheimer’s and dementia in 2020 was up nearly 12%, far exceeding all disease categories as reported by the CDC.
“Unfortunately, we don’t know why,” said Nikki Wegner, western North Dakota program manager for the Alzheimer’s Association.
Among other states in the region, Montana saw a nearly 18% increase in such deaths, while Minnesota and South Dakota saw increases of 11.6% and 10.1%, respectively.
Arizona and Nevada reported the most dramatic increases, with Alzheimer’s and dementia deaths rising 30.4% and 29.7% in 2020.
For reference, dementia is an umbrella term for loss of memory, language, problem-solving and other thinking abilities that are severe enough to interfere with daily life. Alzheimer's is the most common cause of dementia, Wegner said.
People who have dementia and Alzheimer's disease are especially vulnerable to COVID-19, she said, because they tend to be older, living in communal settings and often have other underlying health conditions.
If they’re living away from home, being isolated from loved ones due to visitor restrictions can accelerate their decline, she said.
The pandemic has been difficult for their caregivers, as well.
With everyone being careful not to spread the virus, even family members who normally would provide a break to the primary caregiver are not coming in as often.
“That person is 24/7 and that can be really challenging and can really take a toll on somebody’s health and well-being,” Wegner said.
A Minot, N.D., man and his wife are among those trying to navigate the difficulties.
Lisa Millsap, 60, is one of the estimated 15,000 North Dakotans living with Alzheimer’s disease. Diagnosed at age 55, she has an early onset form of the disease
Her husband of 41 years, Mel Millsap, is trying everything he can to continue caring for her at home.
Pre-pandemic, Lisa could do some things for herself, including bathing and eating.
She used to attend an adult program at a Minot memory care facility during the day, and Mel could be with her at night.
That opportunity is no longer available, mainly because her condition has deteriorated.
“Today, she needs help with everything,” Mel Millsap said.
He took time away from his job as a mechanic on the Minot Air Force Base to bridge the gap.
But now, he’s put together a small team of caregivers, including Lisa’s sister and a granddaughter, and said he’s getting close to returning to work full-time.
Mel tells people, as difficult as it is for caregivers, it doesn’t compare to what Lisa deals with.
Before Ron Peterson’s dementia diagnosis, his family started noticing small things.
An avid hunter and outdoorsman, Peterson’s grandkids noticed he was stumbling and tripping out in the fields.
A person who could fix anything, Peterson began to struggle with simple repair jobs.
Karen Peterson wanted to care for her husband on her own at home, but he refused to eat or take his medication and started having falls.
“Dementia can take away or make people not who they were,” said daughter Julie.
Millsap said it’s important to remind yourself you’re not alone and for others to lend a hand.
“Don’t just ask them if they need help … show up, roll your sleeves up and try and do something to help them,” he said.
The Alzheimer’s Association advises residents and staff of long term care facilities to receive a COVID vaccine when offered.
It also offers resources to help protect those living with dementia during the pandemic at alz.org/covid19 as well as a 24/7 Helpline: 800-272-3900.