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There are an estimated 350,000 family caregivers in Iowa, caring for spouses, parents, siblings or children with chronic or terminal illnesses. Without much formal support, they are often left to perform medical tasks and navigate complex systems on their own.
Read the full story: Iowa’s family caregivers play critical role
Laura’s story: ‘You have to keep going’
ATLANTIC — Laura and Denny Stuetelberg have the kind of love story that you see in movies.
The two met in college at South Dakota State University. They fell in love and married in 1971. A few years later, Denny convinced her to move to his hometown of Atlantic, Iowa. He wanted to work at the small town pharmacy that had hired him when he was 16 years old.
Denny eventually bought the business, Rex Pharmacy, from his former boss and mentor. Laura worked at a bank. The couple had two children, Tracy and Nick. They planned to travel during retirement.
Then in 2007, Denny was diagnosed with Parkinson’s disease.
“My role has changed a lot,” said Laura. “I really have to do everything involved with daily living.”
Denny’s disease progressed quickly. Rather than having tremors, Parkinson’s has made Denny more rigid, and his movements are slow. He also has trouble communicating, which is hard, Laura said, because his mind still is sharp.
They had to sell the pharmacy in 2011. That tore him apart.
“He lived and breathed that pharmacy,” she said.
They also had to sell their two-story home after he fell several times going up and down the stairs. In 2010 they bought a ranch home. But then the falls started again — he broke his arm, hip and leg.
“I couldn’t lift him to get him to the bathroom,” Laura explained. “A social worker came over and said it was time to move, for his safety and my safety.”
And so in 2015, the two, both 67, moved into separate apartments at Heritage House — an independent and assisted living community. Denny lives in a secure facility with skilled care while Laura lives in an independent living apartment.
“It’s hard to live in separate locations,” she said. “But I can walk over and bring him over to my place for meals or to watch a movie.”
The couple plays dominoes, will go see movies and will stop by the country club every Tuesday for a sandwich and socializing. Laura has joined a caregiver’s support group for which she is immensely thankful.
“We are there for each other — a lot of the time, when we get together, we don’t talk about our situations. We just have a good time,” she said. “It’s hard to admit that you can’t provide all the care for your loved one. It’s hard to accept.”
It’s not the retirement Laura originally envisioned. But it’s one filled with friends and family and love.
“I feel like we have to make the best of the situation,” she said. “We stay upbeat. You have to keep on going.”
Becky’s story: ‘I still feel lucky’
ANKENY — Becky Orr Montgomery didn’t think twice about caring for her mother, Romie Orr, when Romie was diagnosed with Alzheimer’s.
“You just protect your parents,” she said.
Becky helped her father, Johnny Orr, care for Romie for about 15 years — she drove her to appointments, bathed her and got her to eat when others couldn’t. She also worked to convince her parents to sell their home and move into an assisted-living facility.
“Dad didn’t want to live with a bunch of old people,” she said. “He didn’t consider himself old. ... But he also couldn’t even make a grilled cheese.”
The care facility had someone to manage their medications, help with laundry and cleaning. It was nearby, so Becky could be over quickly if there was a problem.
“There’s a lot to taking care of them even when you’re not physically taking care of them,” she said. “I never looked at it as hard.”
Instead, she worked to create moments of joy and made necessary changes along the way.
“You adapt,” she said. “One day she turned the gas on the stove up instead of down and the kitchen fills up with smoke. So from then on, we turned off the gas and just took her out to dinner.”
Trial and error was a big part of taking care of Romie, Becky said. If something didn’t work, you just had to try something new.
“You just have to be patient and love them and overlook the disease,” she said.
Johnny, the Iowa State University basketball coach from 1980-94, died three years ago, at the age of 86. And while Romie was lucid at his funeral, by the next day, she had no idea her husband had died. So Becky would tell her he was out running an errand or tell her he was running late. Romie died about two-and-a-half years after Johnny.
She got breast cancer a second time and then broke her hip. She had a hard time swallowing, and the family moved her into hospice care.
“She just wore out,” Becky said.
“They were amazing parents,” she said. “I still feel lucky.”
Nancy’s story: ‘There’s no going back’
PALO — It was a nursing job that brought Nancy Rasmussen to Iowa in 1991. But it was Ron who kept her here.
The two met at a Lutheran singles group. They dated for a few years, but broke up for a bit over a difference in opinion. Nancy took a travel nursing assignment and then, one day in 1994, Ron called to tell her that absence had made his heart grow fonder.
They’ve been married for 22 years now.
But three years ago, Ron got lost driving to one of his favorite breakfast spots. It wasn’t long after that he was diagnosed with Alzheimer’s. He’s been taking Aricept — a drug used to treat mild to moderate dementia. Nancy thinks it’s been helping.
“But it’s always going to progress,” she said. “There’s no going back.”
They had to sell his car last year. That was difficult, Nancy said. She’s now in charge of the finances — a big change. She’s both his medical and durable power of attorney.
She sets up his medication and then makes sure he remembers to take it. Ron also is an insulin dependent diabetic, so she has to be watchful of his blood sugar. She’s also working to sell their house and downsize to a condo.
“Sometimes he doesn’t remember that we’re going to move,” she said. “I know that’s going to be hard for him. Like for instance, the cereal bowls haven’t moved. But he couldn’t find them the other day.”
To keep her sanity, Nancy volunteers and does pottery once a week. She also takes advantage of a support group for caregivers.
She has a strong support network — two of Ron’s adult children live in nearby cities and help her out around the house and with Ron.
But Nancy knows that if he becomes more physically unstable, she’ll have to put him in an assisted-living facility because she won’t be able to take care of him. She’s trying to be proactive in that regard, looking at a handful of places and even putting his name down for one.
It’s hard to watch the disease progress, Nancy said. Ron has always been a social man. “He never met a person he couldn’t talk to,” she said. But these days, in social situations, he often looks lost.
One thing Ron is aware of, she said, is how much she does for him.
“He does compliment me, and says, ‘I’m so lucky to have you, you take such good care of me,’” she said. “Which is ironic because he never did that before.”
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This story appears in the second edition of the Iowa Ideas magazine. Order a free copy here.