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By ERICA HALL
After 33 years and several relocations with Goodyear, Dick Lundgren decided it was time to retire.
But Dick didnt leave his job for lazy days and lots of free time. He left to become a full-time caretaker for Dorothee, his wife of 38 years whose Alzheimers disease had advanced to a point she needed someone around constantly to look out for her.
That Dorothee was lonely and sad was breaking his heart.
One of the big things was Id always come home and say, How was your day? Dick said. Shed say, No one called, no one came over. It was kind of boring. That started to wear on me.
Since retirement, Dicks become busier than ever. He keeps an eye on Dorothee and participates more actively in the local chapter of the Alzheimers Association, which he credits with giving him the strength he needs to keep up with her deteriorating condition.
Without them, I dont know how people would get through this, he said.
Without her husband, Dorothee doesnt know how shed get through this, either. Sitting at their dining room table one cloudy afternoon, Dick recalled a short conversation theyd had earlier in the day: She said if I wasnt there, shed probably just stay in bed, because she wouldnt know what to do.
Tears filled her eyes as she described what its like to sit at home, trapped by her own mind.
People have to work. They cant come and visit, she said. I cant go anywhere. Whos going to just take me to town? Its a hassle for people. Nobody says that, but its a hassle.
Losing the thread
Two years ago, Dorothee forgot words sometimes, but she could keep up with a conversation as long as she had a little nudging.
Now, she seems to just barely grasp the thread. Her brow is frequently furrowed, and her eyes show confusion and disorientation.
But her sense of humor pokes through every now and then, like the sun breaking through the clouds. When she laughs, the lines disappear and she seems relieved she hasnt been left behind.
Two years ago, Dorothee seemed to have a better understanding and acceptance of her limitations. But now, she seems unclear about what she can and cant do.
Im not really that worried about getting lost, because I still know where I am, she said.
Dick grunted, disbelieving.
I can go to the mall, Dorothee protested. I may not go the direction you would go ... They laughed, but Dick wasnt convinced. He recalled how she got lost in the dark of the upstairs bathroom after shed gotten up in the middle of the night. Dick heard her bumping around and helped her back to bed.
Another time, he heard her knocking on the bathroom door. I was knocking for someone, Dorothee vaguely remembered. I think it was me, Dick said.
Dorothee walks in their neighborhood regularly, but not without her long-haired dachshund, Augie. I dont know whether Augie brings her home or she finds her way, Dick said.
Dick and Dorothee live with the bittersweet reality that, other than her Alzheimers, shes in great health. Its kind of dumb, she said. That one thing up here makes the whole world go round.
The couple first began noticing gray spots in Dorothees memory in 1996, when she started mixing up her Tupperware sales orders and forgetting things shed been doing for years. In 2001, after six years of uncertainty, tests and anxiety, a doctor at the University of Washingtons Alzheimers Disease Research Center confirmed that Dorothee had early-onset Alzheimers.
Symptoms of the disease normally show up in people over 60, but early-onset Alzheimers strikes people younger than 60, some in their late 30s. Dorothee was 49 when she was diagnosed.
Today, Dorothee can follow the thread of a conversation for a few minutes, but she loses track often. She punctuates the discussion with unrelated statements.
I can talk to anyone, and Im not afraid if someone asks me something, she said to Dick at the dining room table. He smiled at her warmly, then continued describing the changes hes observed over the past two years: Shes starting to have trouble getting dressed by herself. She puts her shirt on inside-out or backward and knows somethings wrong, but cant figure out what it is. As they were preparing to leave the doctors office a few weeks ago, she picked up the laces on her shoe and then stopped, her mind blank. She asked Dick for help because she couldnt remember how to tie them.
They cant host family dinners any more because of all the commotion. Dorothee loses track of whats going on and feels overwhelmed. Shell get lost in the conversation because she wont know what shes going to say, Dick said. She usually excuses herself to sit alone in a corner.
And shes begun obsessing about things, like giving Augie a bath. Shell want Dick to bathe the dog every couple of days, and she keeps bringing it up, he said.
They have a game they play where Dick asks her questions and she tries to remember the answers. Lately, theyve been trying to remember the grandchildrens names. The game keeps her a little bit sharper, Dick said. It started out with asking her how old she was and it became a fun game.
But theres no stopping the steady progress of the disease. Sitting at the kitchen table, Dick asked Dorothee a question.
I dont know, she replied. I dont know what youre talking about.
Taking care of Dorothee is hard work, and it can be frustrating. Dick goes to three support groups a month one for the caregivers of regular Alzheimers patients, one for caregivers of patients with early onset Alzheimers, and one he attends with Dorothee.
The early onset group is the most helpful for him, he said, but he likes being able to help the caregivers in the other Alzheimers group.
A ton of people dont go get the help, and they need it so badly, Dick said. Its important to have someone to talk to.
Patricia Hunter, director of programs and policy for the local Alzheimers Association chapter, said people sometimes dont get help because theyre not aware its available. She pointed out there are six caregiver support groups in south King County alone, with specific training and support for caregivers.
According to a recent survey conducted by the national Alzheimers Association, 74 percent of dementia caregivers reported they had unmet needs and 44 percent said they dont use any support services.
Many caregivers said they were unprepared for or need assistance with caring for their ill spouses or family members. A little more than half of caregivers are responsible for giving medicines, pills or injections, 31 percent need help with difficult behaviors, like wandering, 23 percent need help learning how to lift and move the patient, and 17 percent need help dealing with incontinence.
Dick is unusual, according to the numbers reported in the survey. Only 11 percent of respondents said they take part in support groups for caregivers. Only 9 percent use respite services.
Sometimes people are aware of the support and choose not to avail themselves of it. Theres the thought they can handle it alone, that fierce independence, Hunter said. They think they can handle it.
The Alzheimers Association and U.S. Sens. Hillary Rodham Clinton of New York, Chuck Grassley of Iowa and Kit Bond of Missouri urged Congress this year to pass the Ronald Reagan Alzheimers Breakthrough Act to provide assistance and tax relief to caregivers.
The act, named after the former president who suffered from Alzheiimers, includes a $3,000 tax credit to help pay for medication, home healthcare, adult day care and respite care. The act also establishes additional research and educational outreach to better understand Alzheimers disease and caregiver issues.
Hunter said the measure is different from past Alzheimers efforts because it focuses specifically on supporting caregivers.
She added the funding for research is huge, particularly with the wave of people who will be Alzheimers-aged in the coming decades.
Were going to be in a huge crisis, she said. Theres not enough money and not enough people to meet that need.
Pretty soon ...
Dick takes Dorothee for regular checkups at the Alzheimers Disease Research Center at the University of Washington, where shes a participant in a treatment study. Every time she goes in, she takes a mental exam that asks questions like What year is it? and What state do you live in?
Thirty is the maximum score on the test. Two years ago, Dorothee scored 16. This year, she scored 14. Shes losing about a point a year, which is slower than the average of about two points a year.
The prognosis for early-onset Alzheimers patients is about 10 years. Dorothee was diagnosed in 2001, but it appears the medication shes taking is slowing the progress of the disease. Still, with the future so uncertain, Dicks trying to make sure he and his children are prepared.
It may be a long ways away, it may be two months from now, he said.
Even before retirement, Dick began getting his assets in order and making sure hes got the appropriate powers of attorney doled out. His primary concern is that Dorothee will be cared for if anything happens to him. He doesnt want her future, or the quality of her care, decided by the court system.
In everything, from doctor visits to who can make financial or healthcare decisions, Dick has kept their adult children two sons and a daughter in the loop. Everything here has been discussed in great detail with our children, he said.
Eventually, Dick thinks hell rearrange the couples spacious Federal Way home. Hell convert his office downstairs into a bedroom and the laundry room into a three-quarter bathroom so Dorothee wont have to use the stairs. Hell move a daybed downstairs for himself so he can be nearby when she needs help.
They did some traveling earlier this year, but they dont have anything planned for this winter. Dicks not sure how Dorothee would do, since unfamiliar places are becoming more troublesome.
Dorothee, still lost in the twists and turns of an earlier conversation, interjected that she wants a walk-in bathtub because shes afraid shed fall if she had to climb over the side of a regular tub.
Dick explained how busy hes been since retirement. In addition to all the Alzheimers-related activity and traveling earlier this year, hes been meeting with local elected officials about various projects, and he repainted the entire house.
Dorothee sat quietly for a few moments, then spoke again. Pretty soon, she said, Im not even going to be here any more.
Staff writer Erica Hall: 925-5565, firstname.lastname@example.org