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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
Dorothee Lundgren, 57, couldnt remember the word thankful last week, despite repeated efforts. But that doesnt mean she isnt.
Early onset Alzheimers 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 theyve had a wonderful relationship.
Dorothee was 16 when she moved with her parents from Trier, Germany to Great Falls, Mont. in June 1962. Dicks 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 didnt meet until our senior year, Dick said.
During their senior years, Dorothee dated Dicks best friend, but she fell in love with Dick. They were married in April of 1966.
Their family grew as Dicks 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 theres something wrong in there, she said. Theres too much stuff and not enough room. It wasnt 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 couldnt remember how to do it. She got the proportions confused and couldnt 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 Alzheimers 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 shed remember them all, Dick said. Today, she couldnt do it if she tried. She cant hardly keep one thing in the air.
Any one thing wasnt cause for alarm, but, added up, her mind was getting fuzzier and fuzzier.
It wasnt a great big thing, but just a combination of little things, Dick said.
Dorothee went to doctors in Ohio, but to no avail.
They didnt know what it was, Dick said. We knew something was wrong, but we didnt know what it was.
That she was so young compounded matters.
Symptoms of Alzheimers disease typically begin to show up in people over 60. Early onset Alzheimers 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 Alzheimers 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, Alzheimers disease is terminal.
Dorothees doctor visits and tests proved inconclusive and Alzheimers 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.
Dicks job required him to travel frequently he said hed get on a plane Monday morning and come home Thursday evening but Dorothees brain was getting too bad for him to continue.
It got to a point where she couldnt 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 Alzheimers 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, Its hard for me to say and harder for you to listen to, but its Alzheimers, 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 cant keep track of the stitches anymore. People dont call or visit much, she said, and she gets bored and lonely sitting at home.
I think people are afraid to ask. Id much rather someone ask me about it, she said. I cant drive, I cant go to the store. It drives me crazy.
There isnt any Alzheimers disease in Dorothees family, to her knowledge, but then there wouldnt 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 Alzheimers disease, according to the national Alzheimers Disease Education and Referral (ADEAR) Center.
Nationwide, about one in 10 people older than 65 have been diagnosed with Alzheimers, 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.
Theres no cure for Alzheimers, 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 Alzheimers typically have seven to 10 years to live after theyre diagnosed. In an ironic twist, those who get the disease when theyre older live longer than those who get it when theyre young.
Dick and Dorothee dont know how much time she has, but theyre 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 dont know whats going to happen.
Dick has committed to taking care of Dorothee as long as he can, but being a caretaker is extremely difficult. Hes also still working.
Alzheimers 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 dont go to the doctor because theyre 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 Alzheimers 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 Alzheimers patients long-term care, according to ADEAR, and the average lifetime cost per patient is $174,000.
Dick said a caregivers 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.
Youve got to have support, he said. Its knowing youre 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 Alzheimers 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 shes afraid shell forget a word.
If you do and its not there, Ill just put it in, he said gently.
Staff writer Erica Jahn can be reached at 925-5565 and firstname.lastname@example.org