News

Fading away

By ERICA HALL

The Mirror

After 33 years and several relocations with Goodyear, Dick Lundgren decided it was time to retire.

But Dick didn’t 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 Alzheimer’s 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 I’d always come home and say, ‘How was your day?’” Dick said. “She’d say, ‘No one called, no one came over. It was kind of boring.’ That started to wear on me.”

Since retirement, Dick’s become busier than ever. He keeps an eye on Dorothee and participates more actively in the local chapter of the Alzheimer’s Association, which he credits with giving him the strength he needs to keep up with her deteriorating condition.

“Without them, I don’t know how people would get through this,” he said.

Without her husband, Dorothee doesn’t know how she’d get through this, either. Sitting at their dining room table one cloudy afternoon, Dick recalled a short conversation they’d had earlier in the day: “She said if I wasn’t there, she’d probably just stay in bed, because she wouldn’t know what to do.”

Tears filled her eyes as she described what it’s like to sit at home, trapped by her own mind.

“People have to work. They can’t come and visit,” she said. “I can’t go anywhere. Who’s going to just take me to town? It’s a hassle for people. Nobody says that, but it’s 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 hasn’t 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 can’t do.

“I’m 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 wasn’t convinced. He recalled how she got lost in the dark of the upstairs bathroom after she’d 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 don’t 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 Alzheimer’s, she’s in great health. “It’s kind of dumb,” she said. “That one thing up here makes the whole world go round.”

The couple first began noticing gray spots in Dorothee’s memory in 1996, when she started mixing up her Tupperware sales orders and forgetting things she’d been doing for years. In 2001, after six years of uncertainty, tests and anxiety, a doctor at the University of Washington’s Alzheimer’s Disease Research Center confirmed that Dorothee had early-onset Alzheimer’s.

Symptoms of the disease normally show up in people over 60, but early-onset Alzheimer’s 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 I’m 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 he’s observed over the past two years: She’s starting to have trouble getting dressed by herself. She puts her shirt on inside-out or backward and knows something’s wrong, but can’t figure out what it is. As they were preparing to leave the doctor’s 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 couldn’t remember how to tie them.

They can’t host family dinners any more because of all the commotion. Dorothee loses track of what’s going on and feels overwhelmed. “She’ll get lost in the conversation because she won’t know what she’s going to say,” Dick said. She usually excuses herself to sit alone in a corner.

And she’s begun obsessing about things, like giving Augie a bath. She’ll 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, they’ve been trying to remember the grandchildren’s 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 there’s no stopping the steady progress of the disease. Sitting at the kitchen table, Dick asked Dorothee a question.

“I don’t know,” she replied. “I don’t know what you’re talking about.”

Caregiver support

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 Alzheimer’s patients, one for caregivers of patients with early onset Alzheimer’s, 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 Alzheimer’s group.

“A ton of people don’t go get the help, and they need it so badly,” Dick said. “It’s important to have someone to talk to.”

Patricia Hunter, director of programs and policy for the local Alzheimer’s Association chapter, said people sometimes don’t get help because they’re not aware it’s 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 Alzheimer’s Association, 74 percent of dementia caregivers reported they had unmet needs and 44 percent said they don’t 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. “There’s the thought they can handle it alone, that fierce independence,” Hunter said. “They think they can handle it.”

The Alzheimer’s 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 Alzheimer’s Breakthrough Act to provide assistance and tax relief to caregivers.

The act, named after the former president who suffered from Alzheiimer’s, 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 Alzheimer’s disease and caregiver issues.

Hunter said the measure is different from past Alzheimer’s 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 Alzheimer’s-aged in the coming decades.

“We’re going to be in a huge crisis,” she said. “There’s not enough money and not enough people to meet that need.”

‘Pretty soon ... ‘

Dick takes Dorothee for regular checkups at the Alzheimer’s Disease Research Center at the University of Washington, where she’s 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. She’s losing about a point a year, which is slower than the average of about two points a year.

The prognosis for early-onset Alzheimer’s patients is about 10 years. Dorothee was diagnosed in 2001, but it appears the medication she’s taking is slowing the progress of the disease. Still, with the future so uncertain, Dick’s 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 he’s got the appropriate powers of attorney doled out. His primary concern is that Dorothee will be cared for if anything happens to him. He doesn’t 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 he’ll rearrange the couple’s spacious Federal Way home. He’ll convert his office downstairs into a bedroom and the laundry room into a three-quarter bathroom so Dorothee won’t have to use the stairs. He’ll move a daybed downstairs for himself so he can be nearby when she needs help.

They did some traveling earlier this year, but they don’t have anything planned for this winter. Dick’s 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 she’s afraid she’d fall if she had to climb over the side of a regular tub.

Dick explained how busy he’s been since retirement. In addition to all the Alzheimer’s-related activity and traveling earlier this year, he’s 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, “I’m not even going to be here any more.”

Staff writer Erica Hall: 925-5565, ehall@fedwaymirror.com

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