IDAHO FALLS — A few weeks ago, Jared Fuhriman sat in a chair in his living room and read the news. He had just finished breakfast.
Afterward he turned to his wife and wondered aloud if famed NCAA women’s basketball coach Pat Summitt might talk to him about her experience with Alzheimer’s disease. She was diagnosed in 2011.
“Jared,” Karen Fuhriman said. “Pat Summitt died. You just read it in the newspaper.”
He had also read about it before in other stories. Summitt, the winningest coast in NCAA basketball history, died June 28 at age 64 in a senior living facility in Knoxville, Tenn.
Jared also has early-onset Alzheimer’s. He was diagnosed with memory cognitive impairment in 2011 during his second term as mayor of Idaho Falls, and the disease has slowly progressed since.
He’s pensive when he speaks. Thoughtful, often on the edge between insight and forgetfulness.
At times he relies on Karen to finish a sentence, and while she works at an orthodontist’s office he maintains the yard, or volunteers with nearby organizations.
Though the dynamics of their lives have shifted, the Fuhrimans have looked at the diagnosis as a kind of opportunity, something to wrap a message around from atop the soapbox offered by a life of high-profile public service.
‘Now what do I do?’
Jared didn’t know when his memory started to go. His assistant and the city’s division directors noticed before he did.
One day city officials scheduled a meeting at Applebee’s, as they’d done dozens of times.
“And he called his assistant after a half hour of driving around and couldn’t remember where Applebee’s was,” Karen said.
He’d also repeat things or forget about meetings altogether.
The diagnosis brought depression.
“When I found out, I cried. I cried because I knew there was no cure for it,” Jared said.
The family became worried about finances and the stigma of a mental health disorder.
“I was scared to death. What’s going to happen? How are we going to survive?’” Karen said.
Jared was diagnosed at 49, which compounded the surprise of the disease’s onset. Only 5 percent of Alzheimer’s patients are early-onset, according to the Alzheimer’s Association, defined as someone who gets the disease in their 40s or 50s.
Early-onset Alzheimer’s typically has a stronger correlation to genetics than other types. The Fuhriman children have decided not to test their own DNA to check if they have a greater chance of getting it.
Part of the difficulty in Jared’s diagnosis was accepting the end of his time as mayor; he likely would’ve run for a third term.
“I had so much fun. And I miss the people, especially who I worked with,” Jared said. “Going from Mach 90, all of a sudden it’s like ‘Now what to do I do?’”
He wasn’t able to provide for his family anymore.
“Karen’s bringing in the bacon and that bothers me,” Jared said. “I still feel that I have a responsibility to do that.”
Eastern Idaho also didn’t offer a wealth of resources to Alzheimer’s patients.
At the advice of his general practice doctor, Jared began seeing a neurologist at the University of Utah. Shortly after, he began applying for experimental studies.
The Fuhrimans drove monthly to Salt Lake City, where Jared was tested and injected with new medications — twelve long needles into his abdomen each time.
“I was a guinea pig,” he said. “And I was happy to do it.”
Meanwhile, errands and household chores became difficult. Jared couldn’t remember people’s names that he had known for years before.
Brian Arave, a member of the Alzheimer’s Leadership Committee under the Greater Idaho Chapter of the Alzheimer’s Association, grew up with Jared in Idaho Falls. The two are three months apart in age.
Jared couldn’t recognize Arave after he was diagnosed.
“That frustrates him to no end. He used to be the mayor; he knew hundreds of names,” Arave said. “You can ask if he remembers the football game between Bonneville and Skyline his senior year and he’ll remember; it’s just the short-term stuff.”
Alzheimer’s destroys the brain with an excess of protein plaques and neurofibrillary tangles.
“It’s kind of like clogging an electrical circuit so messages can’t go through,” said Lisa Hong, an occupational therapist who specializes in Alzheimer’s.
From there, brain tissue wastes away, mental and physical functions along with it.
The buildup usually starts in the hippocampus, where memories are formed.
“I didn’t want to be around people because I couldn’t remember their names, even though I knew them very very well. I didn’t want to be outside anymore. ” Jared said. “There was a stigma for me.”
A positive outlook
Since his diagnosis, Jared has developed a routine, which is integral in slowing the disease’s progress.
“Anything that enhances behavioral or procedural memories will enhance quality of life and those things will often be found in the home,” said Scott Holmes, owner of Idaho Falls-based Visiting Angels Living Assistance Services.
For two or three hours each day, Jared sits at his dining room table and combs through the newspaper for word jumbles and crossword puzzles. He has a stack of word game books, and the internet for a round of Scrabble when he wants.
“I don’t know who they are, but I get on and play with people all over the country. And that gives me a bit of a lift,” Jared said.
Lately, when he approaches an old friend, he asks at the beginning of a conversation what their name is to avoid a period of awkwardness. He carries a paper pad in his pocket, or a couple of note cards to remind himself of things.
Each week Jared visits the Eastern Idaho Regional Medical Center and The Adventure Center, where he talks with patients, or races them in a wheelchair.
Keeping a positive outlook through the development of the incurable disease has been essential to the Fuhrimans.
“You can take this disease like any other and turn it into a huge, morbid death sentence — you can hate life. Or you can have humor about it,” Karen said.
Sitting in her living room a recent Friday, she took a long pause, eyes furrowed, to remember the acronym of a nearby center.
“See, I’m rubbing off on her,” Jared said with a smirk.
“EICAP,” she finally said. “They just started a support group.”
“EICAP, what was that again?” Jared said, followed by another pause before remembering the Eastern Idaho Community Action Partnership. “Oh yeah. I was on the board there. Duh.”
Sharing their story
Lately, the Fuhrimans have taken to public speaking engagements.
In May, they spoke at the National Association of Active and Retired Federal Employees State Convention at the Shilo Inn. The organization is the largest supporter of the Alzheimer’s Association, having donated nearly $10 million nationwide. There have been other events since, and in September the Fuhrimans will speak at eastern Idaho’s Walk to End Alzheimer’s.
The engagements don’t always go smoothly.
In June, they spoke at an Alzheimer’s event at the Fairwinds Sand Creek assisted living center. Jared became faint, overwhelmed.
“His wife stepped up and said ‘This is how it works.’” Arave said. “He turned pale and had to sit down; most people wouldn’t put themselves in public that way.”
Speaking and volunteering is Jared’s way of contributing to society in the place of government work.
At engagements he briefly explains the disease, then opens it up to a question and answer session, which can get emotional.
“It’s the fears that come out,” Jared said. “People are hungry. They want to know because they know they might have the disease or somebody else who has it.”
The Fuhrimans think that showing vulnerability — nearly passing out on a stage — allows the crowd to open up. Arave agreed.
“There’s always self-protection with diseases. People don’t want to be exposed on a very personal level, so when they see Jared do that it changes everything. Different information gets communicated and the level of care and change is much higher.”
Alzheimer’s is the third leading cause of death in the U.S. after heart disease and cancer. Compared to other top 10 causes of death, it has fewer prospects for cure and prevention. And it will get worse as medicine improves and life expectancies continue to increase.
A University of California, Los Angeles professor estimates that one in 85 people will have the disease by 2050.
Still, many aren’t aware of it, or are unwilling to accept its presence, Hong said. She runs Idaho Falls-based Generations Occupational Therapy.
“It’s depressing. It’s scary because there’s no definitive cause, and there’s not even really any medical treatment. There are some things developed to help slow (the disease’s) progress down, but it is really a bleak outlook,” Hong said. “With cancer there are treatments that increase your life span. HIV used to be a death sentence, now people live with it for years. Alzheimer’s doesn’t have that.”
Subsequently, many people don’t seek help, which can significantly reduce the quality of life for people with Alzheimer’s.
Rural areas also limit resource availability. Specialists tend to live in Boise or Salt Lake City.
“Hospitals, neurologists, physicians, awareness about the disease, ability to diagnosis — all of these things are lacking in rural communities,” Holmes said.
Eastern Idaho has improved though, Karen said. “I think it’s getting there, slowly but surely.”
The Alzheimer’s Association expanded to eastern Idaho when the Alzheimer’s Leadership Committee launched in December 2015. There are also support groups in the region, and more assisted living facilities are opening memory disorder wings.
The dispersed nature of rural regions may make home care more of a necessity.
Hong visits patients at their homes. Good occupational therapists can provide a level of care that’s difficult to get from family members and loved ones, no matter how good their intentions are, she said.
Alzheimer’s can cause depression and anger in patients who aren’t able to communicate their thoughts, or aren’t able to formulate the thoughts they need to communicate.
“People have a hard time with negative behaviors, but what are the strategies to help? How can we communicate better and manage pain?” Hong said. “We need to look at their reality. We can’t fix them, and we can’t bring them back into our reality so we need to make them safe, functional and provide a quality of life within theirs.”
The Fuhrimans have been changing their reality to accommodate what they know will happen as the years pass and Jared’s brain continues to deteriorate.
They’re redecorating their house to create contrast between window and wall, carpet and floor because Jared’s perception of colors and depth will eventually diminish.
“It affects the whole brain. They get to the point where the dots don’t connect, where they can’t see the difference between toothpaste and shaving cream,” Karen said.
Many Alzheimer’s patients eventually die from pneumonia or malnutrition.
Jared wants to squeeze in as many speaking engagements as he can, as much time volunteering as possible. He feels healthy enough to run through another term as mayor, though he knows he can’t.
“When people say they have Alzheimer’s, they immediately think you’re crazy or need to be in a home,” Karen said. “There’s days that are good, bad or in between. But life can be good; it can be livable. Do we have to change some things? Yes. But you can do it and it can still be good.”
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