Cindi Jasa began noticing the symptoms about three years ago.
Her husband, Doug, had been very caring and giving.
But his moods were changing. He’d become angry or exhibit childlike behaviors.
“You couldn’t say anything without him coming up with a word that rhymed – just little frustrations like that,” she said. “There was some anger that wasn’t typical. Doug was always very outgoing, but he became uncomfortable in new surroundings or with new or too many people.”
Jasa began taking her husband to doctors. The first two didn’t take her seriously.
“It was quite a while before I found someone who finally believed me,” she said.
Testing eventually showed that Doug Jasa had early onset Alzheimer’s disease, which affects people under age 65, and which ultimately led to his death.
An estimated 5.7 million Americans of all ages are living with Alzheimer’s dementia in 2018. This number includes an estimated 5.5 million people age 65 and older and approximately 200,000 individuals under age 65 who have younger-onset Alzheimer’s.
On Sept. 22, the Annual “Memory Walk” is planned in the Midland University Wikert Event Center, 940 E. Ninth St., Fremont.
Registration is at 9 a.m. with the walk beginning at 9:30 a.m. The Fremont Area Alzheimer’s Collaboration is the host.
The public is invited to the event, designed to raise funds and awareness of a disease that affects families like the Jasas.
Cindi and Doug Jasa had known each other since grade school. Years later they ran into each other, started dating and married in 1973. They would have two sons, Mike and Nick, and 10 grandchildren.
And they’d have a good life.
Jasa, who lives in Omaha, was shocked when she learned her spouse had Alzheimer’s. No other family member had it. She’d never dealt with anyone who’d had it.
“It was a real eye opener to all of us,” she said.
Doug Jasa was diagnosed in February 2017. He was 65.
“I don’t have that,” he said of the disease.
But within weeks, he quit work. His driver’s license was taken in March 2017.
“That was the hardest thing for him,” she said. “He didn’t understand why.”
Jasa stepped down from her job that July.
“We own a business,” she said. “They found someone to replace me, because I couldn’t keep up with everything.”
Jasa is grateful for support from family and friends.
It helped to have friends take him to lunch or out for a while. She encourages caregivers to have a good support system and, if they can, to respite care.
Her husband was against the latter, however.
“But the days get very long and it’s a pretty lonely disease for the caregiver, because you have no one to have a conversation with,” she said.
The Jasas went out to eat or ran errands together, yet that grew more difficult as time passed. She constantly had to watch him.
“I didn’t know what he’d do,” she said. “He would take big piles of napkins from restaurants. He’d take their mints and sometimes he’d pass them out to people in the restaurant. Or he’d clear tables.”
Eventually, they’d just take walks or do things around the house. He could mow the lawn and do a few chores.
“As he became more childlike, he needed things explained simply and he couldn’t follow stories that had too many components,” she added. “He needed a lot of praise and approval for everything he did. He would frequently ask ‘What should I do?’ or ‘How do I do this?’”
He repeated stories. No one could joke with him, because he took everything literally.
After a while, nothing tasted good to him and he wasn’t eating well.
They’d go to his favorite restaurants, but he didn’t remember what to order. If she ordered it, he didn’t like it.
He lost weight quickly.
They had friends who’d travel with them and they took four trips in about five months’ time – trips she couldn’t have taken him on by herself.
Jasa noted something she did which seemed to help.
“I had small cards made up that said, ‘Thanks for your kindness. He has Alzheimer’s.’ I would give them to people when I felt his behavior needed an explanation. I also gave some cards to his friends who took him to lunch. People usually change their response when they understand what’s going on,” she said.
Toward the end of his life, Doug was very sweet.
“He told me every day how much he loved me,” she said.
Hospice workers paid a visit days before Jasa’s death. He was mowing the lawn and answering their questions.
That was on a Thursday.
On Saturday, he couldn’t walk straight and didn’t want to eat.
Normally, they’d go out for breakfast on Sunday. That Sunday, she asked if he wanted to go.
“What’s breakfast?” he asked.
She tried to explain it to him. They went out with his mother and some of the grandkids.
He was able to briefly attend a surprise birthday party for a relative, but wasn’t walking well.
She had a friend spend the night and they were up with him every 20 to 30 minutes. They became exhausted.
Early the next morning, she called hospice. The hospice workers took over and lined up 24-hour care, which started at 4 p.m.
“And at 10 o’clock, he was gone,” she said. “It was a real blessing, because he couldn’t do anything on the last day. He was in bed on morphine. I’m so thankful he didn’t have to do a lot of that.”
It was June 25. He was 66 years old.
They would have been married 45 years on Sept. 8.
Jasa never thought she’d be a widow at age 63.
The Alzheimer’s Association states that many people with younger-onset Alzheimer’s are in their 40s and 50s. They have families and careers when the disease strikes.
“I was told if you know one person with Alzheimer’s – you know one person … everyone’s different,” she said.
She is grateful to those who provided support.
“The best thing I had was support from family and friends,” she said. “I can’t say how lonely it is when you just need someone to talk to – and in my situation, you can’t sit and be on the phone.”
Even a text saying, ‘I’m thinking about you,’ can help. So can a dinner invitation, knowing both the caregiver and person with Alzheimer’s probably will attend.
Jasa said it can be overwhelming for a caregiver to have to take on decisions that a spouse used to make.
“My heart goes out to people who have to work and do this,” she said.
She urges people who notice abnormal behaviors in a loved one to continue trying to find a medical professional who will help.
Organizers of the Sept. 22 walk said 60 percent of the monies raised from this event will be donated directly to institutions conducting cutting-edge research in Alzheimer’s disease. The remaining 40 percent will be given as grants to support caregiver education and programming in the Fremont area.
To register go to: www.alzheimers-fremont.org or for more information call: 402-753-2078.