A Longer Goodbye
Alzheimer’s isn't just an older person’s disease anymore
Story by Stephanie Conner • Photos by Gary Matoso
|Amy Shives, a Spokane, WA woman who has early-onset Alzheimer’s, considers her dog, Chester, a first-rate companion.
Amy Shives had spent more than 25 years as a Spokane Community College faculty member. She knew all of the students she worked with, and the details of their academics and schedules. She knew which classes transferred to the University of Washington and which didn’t. She helped students with their academic queries and helped them navigate mental health challenges, too.
Then, over about a year, Shives started to realize she was forgetting things. She couldn’t remember which classes transferred or where her students were in their programs. In time, remembering her computer logons became impossible. She was just 52, but she suspected Alzheimer’s disease was the culprit.
“I had a huge hint,” Shives says. “My mother died of [complications of] younger-onset Alzheimer’s.” The diagnosis process began with simple tests to eliminate the possibility of other causes for the memory loss, such as infections or vitamin deficiencies.
Ultimately, a specialized scan revealed that Shives was in fact suffering from younger-onset Alzheimer’s.
“The brain damage was right there [on the scan],” she says. “It was unequivocal.”
Four years later, Shives struggles with short-term memory but is able to function day to day.
“I do most things just fine,” she explains. “I don’t remember the things a normal person can. But I can take care of myself.”
She’s also active with the Alzheimer’s Association—speaking about the disease to help others better understand its impact, as well as participating in fundraising and the annual walk.
||One of Amy’s hobbies is to collect Fiesta ceramic dinnerware in bright colors. "I do most things just fine," the Spokane woman says, referring to her Alzheimer's. "I don’t remember the things a normal person can. But I can take care of myself.”
She and her husband of 30 years—whom she calls her “care partner”—attend regular Alzheimer’s Association support group meetings at Providence Sacred Heart Medical Center & Children’s Hospital.
The group provides an opportunity for care partners to have their own time to discuss concerns and allows those with the disease to talk with one another about their experience.
It’s also where she met Randy Bjorklund.
Bjorklund was a successful business owner and cabinetmaker when his wife noticed something was wrong.
“I was getting short with him because he’d ask me questions again and again,” explains his wife, Claudia. “I figured it was stress because there were a lot of changes at our cabinet shop at that time. But he was the face and the skill of the cabinet shop, and he couldn’t put pencil to paper anymore and do the designs.”
Finally, they decided to see a doctor. When an MRI showed nothing, the Bjorklunds sought out a PET scan. In June 2009—the week Randy turned 55 and the week their youngest child graduated from high school—Randy was diagnosed with younger-onset Alzheimer’s.
The Alzheimer’s Association defines younger-onset (or early-onset) Alzheimer’s as a form of the disease that affects people younger than 65. More than 5 million Americans have Alzheimer’s, and roughly 4 percent of them—about 200,000 people—have younger-onset disease.
To receive an “old person’s” diagnosis at such a young age is shocking, Claudia says.
“I was more traumatized than he was,” she says. “I started reading, learning all I could. Then, Randy shared at group one time that all I did was read books and cry … and I realized I needed to change and make the most of the time we have left.”
One of the things Bjorklund imparts to his support group peers is a positive attitude.
“The biggest thing I’ve gotten out of this is that even though I can’t do the work that I did before, I still have the ability to reach out to people with this disease—or any disease,” he says. “Health conditions happen, and we have to deal with it.”
With Alzheimer’s, he has learned, there’s nothing he could have done to prevent it, and he can’t beat it into submission.
“You have to give up a lot of things that you’re used to doing. And the more you fight that, the tougher it is,” Bjorklund says. “I’m going to make the best of it.”
|Randy Bjorklund, a Spokane man with early-onset Alzheimer's, his wife, Claudia, and their two dogs, Harley and Buddy, sit on one of Randy’s most recent projects: an old truck he’s turning into a flower bed.
His positive attitude and sense of humor, his wife says, are what have kept her sane through this challenging transition.
He shares his attitude during support group meetings and, Claudia notes, it’s helpful to others.
“A lot of people are angry,” she says. “And he’ll share that he looks at it from the perspective of what he can do instead of focusing on the things he can’t do. He is a poster child for younger-onset Alzheimer’s. And his attitude toward it has been shared with a lot of people as they come into our group.”
Providence Adult Day Health
Through the support group, Shives and the Bjorklunds learned about Providence Adult Day Health, where for more than 35 years, Providence has been caring for older adults facing challenges like Alzheimer’s, dementia, injuries and other age-related issues.
Unlike a skilled nursing or assisted-living facility, Adult Day Health is not a residential program. Clients come to Adult Day Health for outpatient services like physical therapy as well as for the opportunity to socialize and enjoy activities in a safe, monitored environment.
The average age of Adult Day Health clients is 74. And in recent years, Oscar Haupt, manager of Adult Day Health, has noticed an increase in younger-onset Alzheimer’s disease among his clients as well as younger individuals affected by stroke and other conditions.
Of the nearly 50 clients served at Adult Day Health every day, about 70 percent have some type of cognitive issue, Haupt says.
Adult Day Health is beneficial to both the person with Alzheimer’s and to the caregiver. Providence partners with the Alzheimer’s Association to offer support groups for caregivers of those with Alzheimer’s disease. A men’s group, a women’s group and an all-gender group each meet monthly.
“I believe that when we think about the dynamics of caregiving, we need to educate the caregivers,” Haupt says, offering this analogy: “When you fly on an airplane, they tell you that if the pressure changes, before you put the mask on the person you are with, you need to put the mask on yourself. With any type of condition, caregivers need to know to take care of themselves.”
Bringing a loved one to Adult Day Health for two or more days a week provides caregivers with peace of mind; they know that while they take a break their loved one is being cared for in a safe environment.
And for the client, the experience is enriching.
“They’re not just getting emotional and spiritual support, but they are exercising, participating in memory activities or receiving occupational therapy,” Haupt explains. “They’re eating well, and they’re socializing, which is such an important component of anyone’s life.”
The facility is staffed with registered nurses, rehab therapists, a social worker, personal aides and volunteers. And for those who are no longer able to drive, Providence can help arrange transportation to the site. The greatest benefit, Haupt notes, is that coming to Adult Day Health helps older adults stay as independent as possible, for as long as possible.
“Some people have been coming for five or 10 years, and they’re able to stay in their homes,” he adds.
Lending a Hand
|When Spokane man Randy Bjorklund was diagnosed with early-onset Alzheimer's, he adopted two dogs to help keep him company since he is often home.
“You have to give up a lot of things that you’re used to doing," he says. "And the more you fight that, the tougher it is. I’m going to make the best of it.”
Shives and Bjorklund have been volunteering at Adult Day Health for more than a year and a half. The experience has provided them with insight and opportunity.
“It’s neat for me because I will be at that stage someday,” says Shives, who volunteers every Friday. “We all know we’ll be older. But I know I’ll [also] progress through Alzheimer’s.”
She also enjoys the opportunity to use her professional skills as a counselor to talk to people. “I need to contribute after working in a helping position for so long. And I get to do that,” she says. Bjorklund, who volunteers on Wednesdays and Fridays, finds similar benefits.
“I’m in a situation where I can make a difference for people. Providence has enabled me to be part of this,” he says. “I really feel blessed that I can go in there and make a difference in a small way. It’s very gratifying.” During his volunteer shifts, Bjorklund greets clients and helps them settle in. He might get coffee for them or hang up their coats.
“And throughout the day, I help out wherever I can,” he adds. “I’m an extra set of hands.”
But, he says, the most enjoyable thing is visiting with the clients.
“I get a lot of hugs,” he says.
When Claudia picks him up at the end of the day, everyone smiles, hugs him and tells him goodbye. “Providence has really given him an opportunity to shine,” she says. “It gets him out of the house and around people—people who appreciate him. They make him smile, and he makes them smile.”
Plus, Claudia adds, this introduction to Adult Day Health has provided a comfort to them.
“It’s great to know there’s a facility here that’s as personable and enjoyable as Adult Day Health. I would not hesitate when the time comes to have Randy go there,” she says. “I know he’d be well taken care of.” Shives’ and Bjorklund’s contributions don’t go unnoticed.
“They’re giving something back,” Haupt says. “They have a lot of empathy for the people here. They have such big hearts.”
A diagnosis of younger-onset Alzheimer’s isn’t easy to come to terms with, but for the Bjorklunds, their faith has helped them navigate Randy’s diagnosis—and to see the positive. They’re focused on making the most of their time together and on making the most of the situation, which has meant making a difference in the lives of others.
“So many blessings have come out of this diagnosis,” Claudia says. “And Randy volunteering at Adult Health is one of them.”