A Journey Through Dementia
Losing John: Family surrenders to reality
Seattle Times staff
"Squat down. No, sit down. John, just go down on your butt ... Just go backwards. Not like that ... Bend your legs, John. ... Just trust me. ...
"OK, now you're going to soak a minute."
Debbie had hoped to keep her husband at home until death alone parted them. It would have brought her "joy and a lot of peace" to fulfill her wedding vows until the end.
But the disease had its way.
Months of caring for a strong, 200-pound man who had the mind and needs of a little child was an act of love that finally overwhelmed her. Last August, she e-mailed their three grown children:
"Dear kids ... I have decided to begin the process of placing Dad in a nursing home. I've definitely reached my capacity to continue. His blank stares, resistance and confusion are increasing. ... "
Four years ago, John Halvorson — a Boeing airplane mechanic, skilled carpenter and avid collector of Dr Pepper memorabilia — was diagnosed with early-onset Alzheimer's disease. He had lost his ability to complete projects at work, would get lost going to the grocery store and had forgotten how to play pinochle.
He was 52.
The diagnosis was as shocking as the disease was insidious. It has slowly strangled John's brain; he now spends his days in a locked dementia unit, barely able to even eat on his own. It left Debbie heartbroken and exhausted; only recently has she felt able to explore a life beyond caretaking.
And it has sent disturbing tentacles throughout his family. John's father probably suffered from Alzheimer's; his mother has serious memory problems.
And just last week, tests revealed that one of John's sisters — Rosey Meyer, a 59-year-old Group Health nurse — has such severe short-term-memory loss that she can no longer perform her job.
It's too early to determine if Meyer has Alzheimer's, according to her doctor; the rest of her mental functions seem intact. But the news has deepened the family's fears about the genetic threat of dementia.
"That's always something you think about when you have a brother who's in a nursing home — who doesn't talk or do much of anything," Rosey Meyer says. "And he's younger than I am."
ABOUT 10 PERCENT of the 4.5 million Americans with Alzheimer's are early-onset cases, meaning they were diagnosed before they were 65. Some show symptoms in their 40s and 50s.
All will regress to an awful end, in which they become more helpless than an infant, unless some other disease kills them first.
John Halvorson was 55, and in the middle stages of his dementia, in the summer of 2002 when he and Debbie agreed to tell their story in The Seattle Times. They were part of an early-onset support group that included people just coming to terms with Alzheimer's — and some farther along its dark path.
John, at the time, had hit a sad but manageable plateau. He could bathe, shave and dress. He pieced together jigsaw puzzles and read Western paperback novels out loud at the kitchen table. He still went to Bible study with his wife and bowling with a friend from church.
He grew ever more quiet but could initiate playful jokes and speak a few simple sentences.
In painstaking hand printing, he described what it's like to have Alzheimer's:
"Lonely. Friends and relatives are busy now and I am retired. I have a few friends that come by an see from time to time esp I especially love my wife and she is a wonderful lady and I coud'n' do without her when I mess up she is quick to come to my help."
Those days of grace are long gone.
Debbie had quit her job as a child-care specialist with the Highline School District to care for John. She did child care in their home for a while, but now she had ended even that. John had become her full-time job.
IN LATE FALL OF 2002, Debbie put out the word: "I need help. I can't do it alone anymore."
Friends took turns watching John so Debbie could go out in the evening for Bible study and her caregivers' support group.
John's slippage increased. He sat for hours in a back bedroom watching re-runs of his favorite TV shows: "Gunsmoke" and "I Love Lucy." He put on his clothes backward and forgot how to run his belt through the loops. Debbie hid his shoes so he wouldn't go outside to get the mail and forget to come back.
By early last year, she was wearing latex gloves to clean John after he used the bathroom. That was something she never thought she'd be able to do, but she was helped by a frank discussion about hygiene in her support group.
"It's not as bad as I thought," she said. "It's kind of God's grace to be able to take care of him."
Besides, there was no one else.
"You can't wimp out," Debbie said.
A dentist from church provided free care for John. Debbie learned how to brush and floss her husband's teeth while he sat in a reclining chair.
John rarely spoke. It took special treats — such as Butterfinger Blizzards from Dairy Queen — to prompt a response.
"This is good," he'd say.
Those could be the first and last words he spoke all day.
THERE IS NO BIOLOGIC TEST that determines whether a person has Alzheimer's disease. But for families like the Halvorsons, where memory loss seems to plague more than one generation, it's hard not to wonder: Who's next?
Time will tell if it will be Rosey Meyer. But the family's history has caused others to worry if they carry some genetic predisposition.
"It's really close to home," says Eric Halvorson, John and Debbie's oldest child. "It's really scary that it's happening to everybody."
His younger sister, Jodi, is adopted. He has a biological brother, Brian, in Idaho, but hasn't spoken with him about the potential threat of Alzheimer's. "That would make it even more real."
Rosey's memory problems prompted several of the Halvorsons to volunteer for a genetics-research project at the University of Washington's Alzheimer's Disease Research Center. Over the last 15 years, the project has screened more than 1,500 families.
Early last year, UW nurse Ellen Steinbart collected blood samples from John; his identical twin, Jim Halvorson; their sister, Rosey Meyer; and their mother. Researchers would later extract DNA from their white blood cells and compare it with DNA from thousands of other blood samples.
Steinbart also gave the Halvorsons a short memory test.
Jim Halvorson passed it easily, showing no signs of his twin's illness. Jim was born with cerebral palsy, a neurological disorder that causes motor dysfunction. He was spared serious handicaps and was left with just a limp from a shortened leg. But he has always felt like the underdog to his stronger brother, John.
Now the tables were turned.
Jim says he initially had trouble believing his brother was ill, until he learned that John would get lost on the way to the grocery store. Beyond that, he prefers not to talk about John's dementia.
"I don't like to dwell on anything that we can't do anything about," he says.
Their mother, Adeline Halvorson, had difficulty with the test.
Rosey Meyer breezed through but still felt shaky. Deep down, she knew her memory wasn't what it had been. Sometimes, when someone told her something, she couldn't remember it long enough to write it down. She would forget what her husband asked her to buy at the grocery store. At work, she would check a fetal heartbeat on the monitor, then forget what she had seen.
Extensive testing last year seemed to bring good news. Meyer's symptoms pointed to stress and anxiety over problems at home, including the death of a newborn grandchild. The doctor prescribed antidepressants.
But even with simplified work duties, her memory problems continued. A few weeks ago, she was dismissed from her job because her mistakes had grown too serious to ignore. Her doctor may recommend she be put on long-term disability.
An MRI showed that her brain looked healthy. But other tests revealed that her short-term memory was badly damaged. A doctor read a four-sentence paragraph, then asked her what he had read.
"I couldn't remember a thing," Meyer says. "Nothing."
AS JOHN KEPT TAKING small steps backward, the demands of his round-the-clock care were taking too great a toll. Debbie enrolled John in an adult day health program, giving herself a few hours off. It also gave John a chance to adjust to institutional life.
Three times a week, John took the Access bus to Providence Mount Saint Vincent, a long-term-care facility in West Seattle. There, he would have lunch and be encouraged to take part in music therapy, exercise, spiritual reflection and conversation.
"How about you, John? Have you ridden in a plane?" the discussion leader asked one day.
"Plane," John said, brightening a bit. "I've worked on 'em."
"You worked on planes. Excellent. At Boeing?"
"Uh ... " John stalled and started to search through his tangled brain.
"Boeing mechanic?" the leader prompted.
"So, then, did you actually look at the blueprints and build the plane ... "
Lost now, John fell silent.
ALZHEIMER'S DISEASE, the most common form of dementia, was first described in 1906. Science still doesn't know what causes it, but evidence points to an unlucky combination of genetic and environmental factors.
"We think it's a whole bunch of things and, if you've got three or four of them, then you're more likely to get Alzheimer's than somebody else," says Dr. Tom Bird, a geneticist at Seattle's Veterans Administration Medical Center and the University of Washington's Alzheimer's Disease Research Center.
Age is the biggest risk factor; people who live a normal life span have a 10 to 15 percent chance of developing the disease.
Family history is another big risk factor. Genetic studies to date have provided important, but limited answers: Why does one sibling get it and not another? Why does one relative get struck in middle life, and another not until old age?
Researchers have identified three mutated genes that cause early onset of the disease in certain families. A person with one of these genes is almost guaranteed to be diagnosed with Alzheimer's before age 65.
But those families represent no more than 2 percent of cases worldwide. Researchers are scrambling to determine the cause of the other 98 percent.
One clue may reside in yet another gene, called ApoE or Apoliproprotein E. Having a variant of that gene boosts the risk for developing Alzheimer's disease at any age, but particularly as you grow old.
"But how it works is unknown and it's not absolute," Bird says.
That means people who inherit that gene may never get Alzheimer's. And some who don't have the gene may not be spared.
So the hunt is always on for subjects who might contribute a piece to the puzzle. The extended Halvorson family is especially intriguing to researchers.
For one thing, John's father showed signs of dementia in old age. And his mother, 86, has never been diagnosed with dementia but often is disoriented, forgetful and confused.
But John was diagnosed in his early 50s. So the family could have more than 20 years difference in the age of the disease's onset among members.
What causes the huge range in the age of onset, asks Bird.
An answer to that question could help answer another: How can the disease be delayed, or prevented?
It's also fascinating that John has an identical twin. What does it mean if one twin has early onset Alzheimer's and the other doesn't?
If Rosey is eventually diagnosed with Alzheimer's, the family probably has a "genetic predisposition" to the disease, Bird says. But exactly what or how strong that predisposition is still won't be known, he says.
But it is also possible that environmental influences are at play, Bird says, especially given that one twin does not have Alzheimer's.
The UW has performed autopsies on three sets of identical twins, all with Alzheimer's. Researchers now are looking for similarities and differences in those twins' brains.
THE SCIENTIFIC SEARCH through the past doesn't postpone the future for families living with dementia.
Last July, Eric Halvorson's wife gave birth. John and Debbie rushed to the hospital, thrilled to meet their granddaughter. But the euphoria was brief. When Debbie tried to take John to the bathroom, he became agitated and almost hit her.
"He fought me. He got his fist all tight and just glared at me," Debbie says.
That started a downward slide that increased in speed and intensity. When Debbie tried to brush John's teeth, he would clench his lips shut. He could no longer follow her directions to get dressed. She would hand him a shoe and touch his foot, but he couldn't make the connection.
"I just hate this disease," she said. "I don't really get angry at him. I get frustrated and walk away."
To survive emotionally, Debbie clung to memories of romantic times with John — the candlelight dinners, the love messages. She kept the refrigerator door covered with old yellow sticky notes that came straight from his heart:
"Thanks for all you have done for me. I love you."
"Deb — To the love of my life."
"To my valentine. All my love now and forever."
At night, John woke frequently and walked to the bathroom — then didn't know what to do. Debbie would follow, exhausted and in tears, coaxing him.
"If you don't go now, we'll have to get up again," she'd say. He just glared.
She finally gave John a Tylenol PM — so they both could sleep — even though he wasn't supposed to take sleeping pills along with his antidepressants.
"John is dying," she said. "I'm going to do it ... I don't care. I have to sleep tonight or I'm going to go insane."
Their once-active life was consumed by his disease. It got harder and harder for John to be out in public or with other people. They limited their socializing to potluck dinners with the Alzheimer's support group, where they didn't have to make excuses or pretend.
Then, one night last August, John wet the bed. For Debbie, it marked the beginning of the end. She knew she could no longer manage. It was time to place John in a nursing home.
"He'd be just as happy there," she said. "That's what everybody is saying and I think it's true."
LAST SEPT. 11, Debbie and two of their three children — Eric and Jodi — packed up John's clothes, put his favorite TV chair in the trunk of the 1988 Camry and drove to Wesley Homes, a retirement community in Des Moines.
It was several miles from South Seattle, but Debbie knew and trusted the place. Her grandmother had died there a few years earlier, at 100.
Now her 56-year-old husband would be the youngest resident there, by many years, and one of the few men.
John has a bed by the window, with a tree outside. His beloved airplanes roar overhead, on their way to and from Sea-Tac Airport.
Debbie had prepared the room to welcome him. She filled the bulletin board with pictures, and labeled them "our family." She pinned up a quote from Psalms 139:4: "There is not a word on my tongue Lord — You know it altogether."
She brought an album of their life together, the pictures captioned so John wouldn't have to guess. A laminated schedule of his favorite TV shows was posted on the wall. A Dr Pepper lamp sat on the bedside table.
The lamp is the first thing John notices when he walks in the room.
"I knew you'd like that," Debbie says.
In the hall outside, frail old women with thin white hair shuffle back and forth or doze in chairs, clutching dolls and stuffed animals.
By luck, lunch that day is John's favorite: macaroni and cheese. As John watches, Debbie makes a small, sad ceremony of taking off her Alzheimer's caregiver bracelet — a symbol that her caregiving days are over.
Don't rush through these moments, a social worker had advised. They are as important as birth, marriage, death.
Alone in his new room, John sits in his favorite chair with feet propped up, munching a cheese-cracker snack and watching "The Brady Bunch."
THE RELIEF OF NO LONGER being nurse gave way to the grief of losing the man she loved. The next time Debbie visited John, she couldn't stop crying. Until, from nowhere, came this gift:
John took her in his arms, rubbed her back and, with great tenderness, said, "I'm OK here."
But one truth of dementia is its unpredictability. When Debbie visited a few days after that, John surprised her again. But this time, rather than comforting Debbie, he acted almost as if she was imposing on his space.
"It's me," she told him. "Hold my hand."
And Debbie watched with discomfort as John gravitated to an older, female resident. They would hold hands in the hall, and sometimes she would rest her head on his shoulder.
Intellectually, Debbie knew "it's not anybody's fault." Emotionally, she wanted to assert her place as the wife.
It felt like John was letting go. And she was the one holding on. "It sure is like a cold wind on me."
WHAT DEBBIE COULDN'T SEE in her moment of grief was that as one door of her life closed, another was waiting to open. The pastor at her church approached her with a scholarship for a trip to Kenya with other members of the congregation. With John safely in the nursing home, she was free to say yes.
"There's potential for me that I haven't even tapped into for so long," she says. "I feel like I just graduated from high school. I can be anything I want to be."
So in February, she left for two weeks in Africa. The paperwork was in order in case John died while she was gone. The UW would pick up his body and harvest his brain for research, then return him to a funeral home for cremation.
Debbie would grieve without regrets: "I know we loved each other."
As soon as she got back home, she went to visit John. He cried when she showed him photos she had taken of giraffes. Then, in one of his unexplained flashes of clarity, he told Debbie: "I don't want to have Alzheimer's."
In recent weeks, his deterioration has been even more rapid.
He wears diapers and has trouble getting up from a chair. He picks up chunks of food with his fingers but can't really feed himself. He is on medication for anxiety and hallucinations but had a recent episode in which he tried to choke his caregiver.
His son Eric says his father's memory loss runs deeper than just not knowing his son. "He doesn't even remember there's somebody there," Eric says. "It's absolutely beyond comprehension that can happen to anyone."
And as Eric thinks of his own health, and his infant daughter, his horror runs deeper than just the loss of his father. "Hopefully, they'll fix it before I get a chance to see what it's like," he says.
Debbie now has to rebuild a financial platform. John's nursing-home care is covered by Medicaid. But since he grew too ill to work and Debbie quit her job to care for him, they were getting by on his pension, long-term-disability insurance and Social Security disability. When he dies, the disability checks will stop and Debbie, now 52, won't be eligible for Social Security widow's benefits until she's 60.
While she's venturing out into her new future, she still visits John almost daily, and he still seems to know her. She keeps scrupulous watch over his care, making sure his nails are clipped and his body is clean. But she doesn't know how to help his mind. He sleeps so much that she asked the nursing staff to cut back on his antidepressants. But now he cries off and on.
Debbie doesn't know which is worse.
"I'm kind of struggling," she says. "Do I drug him up or do I let him have his feelings?"
ON SATURDAY, JOHN WILL BE 57. Although he is in the end stage of Alzheimer's, he still enjoys simple pleasures: walking outdoors, eating ice cream, listening to music.
His wife, children and church friends — some of whom have relatives with dementia — will gather at the nursing home for a birthday party. They will honor the man John once was, and the spirit that survives.
And some will no doubt wonder if they are bearing witness to their own futures.
Marsha King: 206-464-2232, or firstname.lastname@example.org
Tom Reese: 206-464-8142, or email@example.com
Copyright © 2004 The Seattle Times Company