A Journey Through Dementia
Losing John: The harsh middle stage
Seattle Times staff reporter
Today, meet John Halvorson and Debra Muren, early-onset dementia sufferers in the middle of their long goodbyes.
DEBBIE HALVORSON works her way through the questionnaire, answering questions about how well her husband, John, handles everyday activities.
Can he cut his fingernails and use the telephone? He really can't do either very well anymore.
In the past four weeks, did he ever pay attention to small talk for five minutes? Yes. But he rarely spoke.
Did he clear the dishes after a meal or snack? Yes. With supervision.
Did he dispose of garbage in the right place? Yes. Without help.
The questions are part of quarterly exams conducted by the Seattle Clinical Research Center as part of a study for Galantamine, a drug used to treat memory loss.
More than two years ago, at age 52, John Halvorson, a Boeing airplane mechanic, was diagnosed with dementia — likely Alzheimer's disease. His dementia progressed gradually, and he now appears to be in the middle of three stages of deterioration that mark the disease.
A talented carpenter who remodeled the house and built the deck and porches, John can no longer saw a piece of wood. His math skills are almost gone. He can hardly follow the play-by-play of a Mariners game. A lifelong reader, he now reads the same page of a paperback over and over, or falters when he tries to read a passage at Bible study. He often walks around aimlessly, as if searching for something. If he's in the kitchen, he doesn't know which way to turn to find the bathroom. He has mistaken the garbage can for a toilet.
A couple of times, he has choked on food. He has started to cry when his wife is out of the room.
And does he remember how all this came about? Did he notice anything in particular, at work, or at home?
"Well," he begins. "I'm going to tell you a story that when I, um, left my house and I didn't know, um, where I was ... ."
He got lost. And besides getting lost, he also wasn't completing tasks at work. His family noticed he did unexplainable things, like lead with the wrong card in pinochle or go to pick up a car and come back without it.
After the diagnosis, Boeing put him on early retirement, plunging his family into economic uncertainty and his wife, Debbie, into uncharted waters as the family's legal and financial manager. Their church paid their bills until disability-insurance and Social Security payments began.
Now, Debbie Halvorson has hired an attorney to help determine how she can keep their home in Seattle and preserve some financial assets while still enabling John to qualify for Medicaid support in a nursing home, where he may be placed someday.
"You don't plan on something like this happening," she says. "So we aren't financially prepared to live on disability, Social Security and a reduced pension."
As profound as those financial changes, even more so is the extreme shift in a 31-year marriage.
Debbie had to quit her job as a child-care specialist with the Highline school district and start providing day care at home three days a week. That way, she can also watch over John, who doesn't go anywhere by himself anymore.
The two of them do still get out — on walks, to weekly Bible study with a church group they've been in for years and for an occasional restaurant dinner. A friend takes John bowling once a week.
But even those simple outings are a lot of work as John slips further into dementia. "We don't just pick up and do something. It's almost like when you pack up a baby to go to the store," Debbie says. "I have to make sure he stays with me."
Public reaction can make outings difficult and embarrassing.
John, who looks healthy, is quiet by nature. If people start to talk to him, Debbie takes care to explain that he has Alzheimer's. "They just freeze," she says, or immediately change the subject.
"But, gosh, we live with it," Debbie says. "If I don't tell people, they'll think he's stupid instead of having a disease. He used to be able to cover for it. Now he can't."
The Halvorsons' son, Eric, moved back to Seattle from Phoenix to help his parents. Newly married, he and his bride have put their own plans on hold.
"If there are really stages of grief, I'd be smack in the middle of angry," Eric says. "But I can't be mad at this Alzheimer's. And I can't be mad at my dad."
Eric's grandfather showed clear symptoms of dementia, but at a much older age. Eric now fears he, too, may fall victim to the disease. And despite his desire to help, he has found it difficult to spend time with his father.
"I don't want to see what I'm going to be like from the outside," he says.
Dementia has robbed much of John Halvorson's speech. But with help from his wife, he painstakingly prints by hand what it feels like to have Alzheimer's:
Lonely — Friends and relatives are busy now that I am retired. I have a few friends that come by an see from time to time ... esp ... I espesally love my wife and she is a wonderfull lady and I coud'n' do without her ... when I mess up she is quick to come to my help.
Debbie has compiled a scrapbook of their memories, each photo partnered with a caption to cue John on the highlights of his career, marriage and the raising of three children.
There he is wearing a Domino's Pizza uniform for the job he took when Boeing was on strike. There he is building a race car for the Cub Scout Pinewood Derby. There he is with Debbie the day they met. She was 18 years old.
In turn, John is trying to teach his wife things he still remembers before it's too late, like how to fill the propane tank on the barbecue grill. It took two hours. Afterward, they both cried.
"I see him watching himself crumble away, and my load gets harder," Debbie Halvorson says. Some days, she can barely remember what he used to be like.
"It's just sad to see his confusion and frustration as he loses part of life," she says. "One part after another of him just seems to be going."