- Associated Press - Saturday, December 24, 2016

BUHL, Idaho (AP) - Larry Olsen, 77, spent decades as a wilderness survival expert, teaching people to care for themselves in extreme circumstances. But none of his skills prepared him for a disease that would steal his steady bearing and destroy his mind.

And nothing prepared his wife for the consuming demands of dementia caregiving, reported The Times-News (https://bit.ly/2he5GWX).

“I’m just wearing out,” said Sherrel Olsen, 75. “And as we’re noticing more complications arriving, I’m struggling to keep it under control.”

Alzheimer’s disease and related dementias tear away a person’s identity, interrupt family structure and exhaust family members.

Alzheimer’s disease accounts for 70 percent of known dementia cases. The neurodegenerative disorder takes five to 20 years to run its course, and sufferers can lose up to 50 percent of brain mass. That loss brings memory impairment, language difficulty, motor problems and loss of cognitive function. And the changes are permanent and fatal.

For families of Alzheimer’s patients, there is no easy road out.

Caregiver burnout can be devastating, said Shawna Wasko, spokeswoman for the College of Southern Idaho’s Office on Aging. She leads support groups for caregivers and served on the Idaho Alzheimer’s Planning Group.

Repetitive behaviors stress the caregiver. Sometimes the patient inflicts violence or says horrible things. And as the disease destroys parts of the brain, memories go too. An 80-year-old may remember only up to 1960 - when the coffeepot still percolated on the stove - or try to use the bathroom in a sugar bowl because it resembles a childhood chamber pot.

Relationships can disintegrate along with the memories. Patients may call husbands or wives by previous spouses’ names, engage in inappropriate sexual behavior or fall in love with other people.

Even their own appearance in the mirror can be frightening - they have no memory of themselves at the current age. They may become non-verbal and forget how to walk or swallow. And when the frontal brain is affected, the patient loses inhibitions.

“That’s when the person may strip naked in Fred Meyer,” Wasko said, recounting an episode when customers at the store reacted with outrage. “I would like society to grow the hell up and realize when they see some of these behaviors that the person probably has Alzheimer’s.”

Another Alzheimer’s sufferer she knows liked to touch pretty necklaces and earrings, and strangers assumed the worst.

“Caregivers feel so humiliated sometimes, and they are exhausted anyway, and society is so stupid,” Wasko said. “We really need to educate the public when they see these types of behaviors on how they can react in ways that help.”

Wasko’s support groups give caregivers a place to talk safely about those emotionally charged experiences, and they offer practical tips to make life easier - like getting rid of white toilet seats, because people with the disease can’t always distinguish that color. Or using black rugs near forbidden doorways, because patients often dislike stepping on black.

Caregivers have to accept that Alzheimer’s patients may experience a different reality.

“If you argue with them, you will upset them,” Wasko said. “If they believe there is a snake on the floor, get the broom and sweep it outside. If they say they didn’t have lunch and they did, give them a couple apple slices.”

Feelings of guilt may accompany the decision that it’s time to find a care facility, Wasko said, but clear signs are caregiver exhaustion and a patient beginning to show violence.

“I have people, both men and women, getting beat up by spouses,” Wasko said. “Maybe it doesn’t start out that way, but often the violence escalates.”

Wasko provides information for caregivers on respite care, in-home meals, housekeeping, transportation and other community resources that can help keep the Alzheimer’s patient at home longer.

But all the help in the world can’t make this easy.

Larry’s wife: ‘I’m just wearing out’

Married 57 years, the Olsens operated Miracle Hot Springs until they sold the Buhl business to their son in 2004, but they continue to live in the nearby home where they raised their 10 children.

Larry and Sherrel were high school sweethearts.

“I thought: He’s the person I want to be next to because he will take care of you,” Sherrel said. Now she cares for him.

Larry became a schoolteacher, businessman, author and highly sought wilderness expert. He spearheaded the Anasazi Foundation, a wilderness therapeutic program for troubled teens, long before the boot camp programs that followed. But the first harbinger of Larry’s disease appeared in 2011 when he started losing his way.

“He’d take the car and be gone longer than he should have been and then tell me he was out in the country somewhere trying to find his way back,” Sherrel said.

A doctor diagnosed Larry with Lewy body dementia, which combines Parkinson’s disease-like balance problems with the brain cell destruction of Alzheimer’s. Larry’s ability to lay down new memories is impaired, but for now his mind remains sharp as he tells stories from his earlier years.

Glaucoma complicates life further by impairing Larry’s vision.

“I’m bad with dates and numbers,” he said. “I can’t balance the checkbook anymore.”

Sherrel had to take over the budget.

“I discuss things with Larry, but I end up making the decisions and making things happen or following through,” she said. “So it’s like - it’s just quite a bit heavier than it was.”

Sherrel places Larry’s next dose of pills in a water glass and sets them on an orange paper, which eases his confusion about which pills to take.

“I’m actually enjoying him quite a bit,” daughter Jane Olsen said. “Every moment is precious. It’s kind of endearing to me when he’s forgetful.”

When Jane walks through the door, she has learned, he will not be able to tell who is there. So she announces herself.

“It’s hardest on my mother,” Jane said. “She has it 24 hours a day, seven days a week. He’ll call and holler for her. For her it’s constant. Sometimes she feels like her sanity is waning.”

Larry has fallen many times - once outside near his greenhouse, out of others’ sight and where his fall-alert device was out of range. A Miracle Hot Springs customer eventually heard him calling out in distress.

“I can walk, but I have to be really careful or I’ll crash,” said Larry, who uses a cane or walker.

Larry tries to diminish his symptoms with a healthy diet of fresh, organic food, some of which he grows himself.

“I want to be out there getting my hands dirty,” he said.

He used to walk to his greenhouse three or four times a day. Now he misses days. As he makes his way across sidewalk edges, patches of grass and uneven terrain, he knows one misstep could cause a catastrophic plunge. But in the greenhouse, his mood lightens and he chats about his peppers, hanging red on the vine, and columns of kale.

The home was built with a private hot-springs bath, instead of a shower or tub, but steep stairs make it inaccessible for Larry now. He has to use one of the business baths.

In Sherrel’s mind, shower installation is added to an ever-growing list of needed household modifications.

Through the College of Southern Idaho’s Office on Aging, the Olsens signed up for 18 hours a month of respite care. Their son picks up the cost.

The knowledge that more is available if needed eases Sherrel’s mind.

“I wish everyone was able to afford it,” she said.

Respite care means the couple can focus on things they want to do, which for Larry means completing “The Anasazi Kid,” a book about his young life that he’s working on with his editor. For Sherrel, it’s an hour spent outside with her beloved chickens or sorting through decades of photos.

Before the respite help, Sherrel got a taste of feeling that she didn’t want to go on - and that there wasn’t a way out.

In her still moments, she worries about how the disease will progress. Someday, she said, this phase may seem like a piece of cake compared with what follows.

She and Larry used to live parallel lives. Sherrel’s own projects and aspirations kept her busy. Now her world revolves around Larry.

“This has kind of just closed that gate for me and for him too,” she said. “He’s missing what he was doing as much as I’m missing what I was doing. And there is emotional trauma that follows along with that. My heart just aches for him. He’s embarrassed about it. Anytime I’m annoyed I try to think about what he’s dealing with.”

When people ask how Larry is doing, Sherrel says they’re getting along but doesn’t go into detail.

“I don’t want to talk bad about my husband or complain about our future,” she said. “But you need to talk to someone.”

Georgee’s daughter-in-law: ‘You don’t throw people away’

Tiny octogenarian Georgee Pirtle grew up in balmy California, and she hates Idaho’s weather.

In April 2015, Georgee, who has advanced Alzheimer’s disease, was living with her son, Erwin, and daughter-in-law, Tawny Pirtle, at their Albion home. She often sat outside in a camping chair to bask in the sun - as she did in her younger years.

A former hospice nurse, Tawny understands Alzheimer’s, but that didn’t always make the situation easier. A nurse goes home at the end of a day; a family caregiver doesn’t.

“It’s hard because she doesn’t like me,” said Tawny, who surmised that Georgee was confused about how Tawny fit into the family.

Every morning as Georgee got ready for the day, she demanded: “Zip this up, curl my eyelashes, do this, do that, and there is no please,” Tawny said.

When Georgee was at day care, she thought she was working at a store that she was convinced was going out of business because it never sold anything. At home the house was baby-proofed because, like a 2-year-old, she tried to eat candles and decorative soaps.

When Georgee’s doctor commented on her 5-pound weight loss, Georgee pointed at Tawny, who remembers Georgee telling the doctor: “I don’t want to say anything, but she’s a terrible cook.”

Always on the lookout for a boyfriend, Georgee often flirted with the cable man on the roof or other workers who came to the home or the day care.

“We always have to check the van when workers leave,” Tawny said.

Georgee developed incontinence and needed protective undergarments. Thinking she didn’t need them, she pulled them off in disgust. The behavior took a toll on the household furnishings.

“It’s really hard to take care of her because she is really mortified when she wets herself and we notice,” Tawny said.

Issues were compounded at the Pirtle home because the couple has three busy teenage daughters. When they needed to take the girls somewhere, Georgee often didn’t want to go and threw a tantrum.

Tawny said keeping Georgee in their home was worth the difficulty, though.

“It’s good for us and for our kids too,” Tawny said. “You don’t throw people away. We’ve been through a lot, but she deserves respect and dignity, and we try to make her feel like a valuable person.”

When the Times-News caught up with Georgee’s family again in late summer 2016, Georgee was living in the Burley memory care facility where Tawny works as a nurse, after more than three years in the Pirtles’ home.

“The disease really progressed. She was becoming paranoid, and we had the cops at our house a couple of times,” Tawny said.

Once Georgee walked to the post office and called the police on Tawny because Tawny told her she couldn’t take the dog out of the yard.

“She told the police someone attacked her,” Tawny said.

The final straw: Georgee slipped away from their 16-year-old, who was watching her, and 15 minutes later officers knocked at the door. They had found Georgee at the end of the road, hitchhiking.

“We thought that’s probably enough,” Tawny said. “She’s in a safer environment now.”

Jim’s widow: ‘Try to be like you used to be’

Caring for a husband with Alzheimer’s disease, Virginia Fox, 79, felt devastated when she couldn’t physically or mentally do it any longer. Months after James “Jim” Boyd Fox died at 87 in May, Virginia still struggles to rebound physically and emotionally from the caregiving tasks she lovingly performed.

When her children noticed the toll on her, they stepped in and said it was time to find a care facility.

“I just felt helpless and hopeless. I wanted to do those things for him, but I couldn’t. I wanted to help him, but I couldn’t,” she said.

At the disease’s onset, Virginia saw only slight deviations in his behavior from the outgoing, social, hard-working man he had been. As the disease progressed, it took his identity and his ability to recognize the woman and children he adored.

“When you look at someone you care about in the eyes and there is just nothing there, that is the hardest thing,” Virginia said. “I noticed his eyes were blank. I’d go right in front of him and there wasn’t any recognition. I would tell him how much I loved him, and he wouldn’t respond.”

As his disease worsened, Jim began to wander away from the house, always walking from their Rupert home toward Burley. One time a passer-by called police. Virginia went to get him and walked him back home.

A big man, Jim fell often and required petite Virginia’s help to get back on his feet. When he fell in the living room, she tried to get him to crawl to the ottoman so she wouldn’t have to lift him from the ground.

“But he didn’t seem to understand what I wanted him to do,” she said.

Neighbors and the couple’s children were often called to help, but asking embarrassed Virginia.

The physical exertion had a devastating effect on her health. She needed physical therapy as she developed back problems and her blood pressure shot up. Lack of sleep likely compounded her health problems.

“I didn’t get a lot of rest because you never knew when he would get up and take off,” she said.

Once, as the couple lay in bed, Jim asked Virginia why their parents had given them away.

“He must have thought we were just kids,” Virginia said.

She did her best to reassure him, but his bewilderment was evident.

The smallest tasks became impossible for Jim to accomplish. Virginia would ask him to put on his shoes or come to the table, and he’d just look at her blankly.

“Even when you care for a small child, they understand a few words like yes or no or don’t touch,” she said.

As Jim’s confusion grew, he stopped recognizing the home they shared, often asking Virginia if they’d been there long enough. Then he lost the ability to talk. When he was moved to a care facility, he didn’t seem to recognize he was leaving his home. Although he received good care there, he soon wasn’t walking at all.

“And when it’s over with,” Virginia said, pausing for a long, painful moment, “then it’s you that’s got to get back and try to be like you used to be.”

___

Information from: The Times-News, https://www.magicvalley.com

Copyright © 2018 The Washington Times, LLC.

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