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'It's hard for me to say and harder for you to listen to, but it's Alzheimer's'

By ERICA JAHN

Staff writer

Dorothee Lundgren, 57, couldn’t remember the word “thankful” last week, despite repeated efforts. But that doesn’t mean she isn’t.

Early onset Alzheimer’s disease might be poking holes in her memory, causing her to forget what she was going to say or even what she was talking about, but she has a wonderful 2-year-old grandson who brings her joy and a sense of humor to get her by.

Dick Lundgren, 55, her husband, fills in the gaps, sitting quietly while Dorothee speaks until she stops and looks at him from behind her glasses. He offers a word and she nods and says yes, that was what she wanted to say.

They agree they’ve had a wonderful relationship.

Dorothee was 16 when she moved with her parents from Trier, Germany to Great Falls, Mont. in June 1962. Dick’s family moved to Great Falls from Sioux City, Iowa that November. They were sophomores in high school.

“We lived half a block away from each other, but we didn’t meet until our senior year,” Dick said.

During their senior years, Dorothee dated Dick’s best friend, but she fell in love with Dick. They were married in April of 1966.

Their family grew as Dick’s job took them all over the western states and Ohio. In 1988, they ended up in Federal Way and bought a house on the east side of Interstate 5.

In 1995, they moved to Akron, Ohio and from there to the San Francisco Bay area, but they kept the house. “We knew this is where we wanted to retire,” Dick said.

About eight years ago, when they lived in Akron, Dorothee began noticing problems with her mind. It felt like “there’s something wrong in there,” she said. “There’s too much stuff and not enough room. It wasn’t a headache. It was a nagging thing.”

Everybody forgets things, but signs that something was seriously wrong started one morning before breakfast.

Dorothee had been making her recipe for buttermilk pancakes for ages. All of a sudden, she couldn’t remember how to do it. She got the proportions confused and couldn’t finish the recipe.

It got worse.

For 26 years, nobody could beat her at selling Tupperware. She was one of the top 200 sellers in the country and in the top three in the western states. If someone forgot so much as a lid, Dorothee remembered who it belonged to and sent it off.

When Alzheimer’s disease began short-circuiting parts of her brain, she started having trouble putting her orders together. Her sales began slipping.

“She used to be a person with 30 things in the air and she’d remember them all,” Dick said. “Today, she couldn’t do it if she tried. She can’t hardly keep one thing in the air.”

Any one thing wasn’t cause for alarm, but, added up, her mind was getting fuzzier and fuzzier.

“It wasn’t a great big thing, but just a combination of little things,” Dick said.

Dorothee went to doctors in Ohio, but to no avail.

“They didn’t know what it was,” Dick said. “We knew something was wrong, but we didn’t know what it was.”

That she was so young compounded matters.

Symptoms of Alzheimer’s disease typically begin to show up in people over 60. Early onset Alzheimer’s is diagnosed in patients younger than 60 and can strike people as young as their 30s. Dorothee was 49.

Over a period of three years, she visited psychologists and neurologists and underwent MRIs, CT scans and a battery of tests to try to determine what was happening to her memory.

There is no test a doctor can administer that will definitively prove a patient has Alzheimer’s disease. Rather, doctors diagnose it by eliminating everything else it could be.

Because of that, some doctors are hesitant to diagnose a patient — especially a young patient — with the disease, which causes a loss of memory and gradual impairment until the patient can no longer take care of herself.

Though it can take anywhere from three years to 20, Alzheimer’s disease is terminal.

Dorothee’s doctor visits and tests proved inconclusive and Alzheimer’s continued to gnaw away at her memory after they moved to California.

They went to a psychologist recommended by a friend, but “that was a disaster,” Dick said. She continued visiting neurologists and psychologists and taking tests.

Dick’s job required him to travel frequently — he said he’d get on a plane Monday morning and come home Thursday evening — but Dorothee’s brain was getting too bad for him to continue.

“It got to a point where she couldn’t be left alone,” Dick said.

He resigned from the position in California and took one that was open in Federal Way. They moved back into their old house.

Shortly after their return to Washington, their son, who works in the medical field, recommended a psychologist in Auburn. The Lundgrens paid her a visit and, suddenly, doors began opening.

She suggested they call researchers at the University of Washington, which has a nationally recognized Alzheimer’s Disease Research Center.

They made the calls, made an appointment and gave their records to a psychologist. After six years of getting nowhere, they had an answer in two hours.

“She said, ‘It’s hard for me to say and harder for you to listen to, but it’s Alzheimer’s,’” Dick said.

Dorothee stopped driving after she ran into a stop sign on her road on her way home one day. She used to knit and crochet, but she can’t keep track of the stitches anymore. People don’t call or visit much, she said, and she gets bored and lonely sitting at home.

“I think people are afraid to ask. I’d much rather someone ask me about it,” she said. “I can’t drive, I can’t go to the store. It drives me crazy.”

There isn’t any Alzheimer’s disease in Dorothee’s family, to her knowledge, but then there wouldn’t necessarily have to be.

While genetics might contribute to some forms of the disease, suspected factors leading to other forms include diseased genes or a genetic predisposition, abnormal protein build-up in the brain or environmental toxins.

About 100,000 people living in Washington have Alzheimer’s disease, according to the national Alzheimer’s Disease Education and Referral (ADEAR) Center.

Nationwide, about one in 10 people older than 65 have been diagnosed with Alzheimer’s, and about half of those older than 85 have the disease. A small percentage of people in their 30s, 40s and 50s get the early onset form of the disease, according to ADEAR.

There’s no cure for Alzheimer’s, which kills the brain cells that store memory, words, understanding, emotions and other intellectual functions, but there are medications that can slow the disease.

People with early onset Alzheimer’s typically have seven to 10 years to live after they’re diagnosed. In an ironic twist, those who get the disease when they’re older live longer than those who get it when they’re young.

Dick and Dorothee don’t know how much time she has, but they’re preparing for the end, drawing up legal documents and doling out powers of attorney.

“You do everything you should have done when you were 20 years old,” Dick said. “You try to plan as best you can. You don’t know what’s going to happen.”

Dick has committed to taking care of Dorothee as long as he can, but being a caretaker is extremely difficult. He’s also still working.

Alzheimer’s patients suffer from insomnia — their brains stop recognizing normal sleep patterns — which means Dick has to stay up late to keep an eye on her.

Many caregivers get sick with minor illnesses but don’t go to the doctor because they’re too busy.

“A big thing is not only the progression of the disease for the patient, but also the stamina and health of the caregiver,” he said. “I told the kids, ‘You might need to take mom for a day or two so I can go play golf or just get away.’”

Seven out of 10 Alzheimer’s patients live at home and 75 percent of home care is provided by family members, according to ADEAR. Paid care costs about $12,500 a year, which families pay themselves.

Neither Medicare nor most private health insurers cover Alzheimer’s patients’ long-term care, according to ADEAR, and the average lifetime cost per patient is $174,000.

Dick said a caregiver’s support group has helped him tremendously. Meeting other patients or caregivers can lift the burden for people because they can relate. In stories, they find camaraderie.

“You’ve got to have support,” he said. “It’s knowing you’re not the only one going through it.”

Despite the challenges and the fear, Dick and Dorothee are making the most of their time. Dick said his patience level has skyrocketed, and Dorothee refuses to lose her sense of humor.

After 37 years of marriage, three children, several moves with Goodyear and now Alzheimer’s disease, Dick and Dorothee have never had a fight.

Sitting on the couch next to Dick, with her hands folded in her lap, Dorothee said she’s afraid she’ll forget a word.

“If you do and it’s not there, I’ll just put it in,” he said gently.

Staff writer Erica Jahn can be reached at 925-5565 and ejahn@fedwaymirror.com

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