Losing Betsy — A move nobody wanted
Seven years ago, Betsy Meyer learned she had early onset dementia. After years of caring for her at home, the family last month yielded to a dreaded reality: It was no longer possible.
Seattle Times staff reporter
A Journey Through Dementia
A Seattle Times special report: Alzheimer's disease is a road backward through memory and function. The journey can be especially rocky when it strikes in the prime of life. Begining in 2002, three Seattle-area families broke the silence of early-onset dementia to share their experiences.
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Betsy Meyer woke up on the pullout sofa in the living room on her last morning at home in West Seattle.
She and her husband, Jeff, were sleeping there because she'd recently forgotten how to go up and down the bedroom stairs.
Jeff took her hands and patiently coached: "You want to stand up and get ready. One. Two. Three."
He led her to the toilet, coaxed her to sit and persuaded her to stand up with several more "One. Two. Three's." Then he dressed her — hooked the bra, pulled up the pants, buttoned the blouse and tied each shoe.
Finally, he brushed her hair into a ponytail that has turned mostly gray.
"I've always said I want to keep her as long as I can," Jeff said several weeks ago. "But I'm kind of reaching the end of my ability to do this stuff."
Sooner than expected, that day arrived.
Seven years ago, when she was 46, Betsy got a shocking diagnosis — early onset dementia — probably Alzheimer's disease. Since then, she's gone from forgetting how to fold laundry to forgetting who she is.
On the morning of July 13, Jeff moved his wife to a state-licensed adult family home in Renton.
Now 53, Betsy would be the youngest resident by 24 years.
Besides clothes, her suitcase held adult diapers, the Bible, a stuffed lion and hedgehog — characters from her favorite children's book.
Years of heartaches and goodbyes came before this decision.
The whole family — Jeff and Betsy's two children, their own mothers, Betsy's sister in Seattle — agreed this was the right thing to do.
Still, it felt strange. This wasn't a death or divorce.
"I'm sending her away," said Jeff, who believes he was meant to care for her. "... I'll probably just break down."
Eight years ago, Betsy was an accountant for a downtown law firm.
She taught Sunday school, baked cakes from scratch and sewed for her kids — Emily, who is now 16, and Alex, who is 20.
Raised in a working-class Portland neighborhood, she graduated from the University of Washington. She and Jeff met through their Seattle church and married 25 years ago.
Jeff, a graduate of Renton High School, made one of Seattle's early independent films, then worked for more than 30 years in computer operations for a bank.
They were devout Lutherans and equal partners in marriage (though Jeff often said Betsy was the smarter of the two).
Their life started to change when Betsy made serious mistakes on the job and neglected responsibilities at home, such as picking Alex up from basketball practice.
But even after her diagnosis, she seemed so normal that her family could avoid the reality of the crushing news. Then little by little she forgot — simple words, the sugar in the cake, the soup aisle in the grocery. She quit driving after getting confused at intersections.
"The worst thing is the kids," Betsy said in late 2001. "I don't know how long it's going to be before I don't know them."
Today, the only family member she still calls by name is "Abby" the cat.
"She has started calling me mom every once in a while," her daughter, Emily, recently wrote in a blog that only friends are allowed to read. "That is the hardest thing."
Emily was 9 when Betsy was diagnosed. "I miss her so much. ... I can hardly remember anything about who she was ... I do remember ... she loves me and would do anything for me."
One of Betsy's last big decisions was to allow The Seattle Times to tell her story. It might help if readers could see a real person and family cope with a devastating disease — one that's predicted to become epidemic as the nation's baby boomers age.
The Times published the first chapter of their story in 2002 and a second chapter in 2004.
Early on, the effects of Alzheimer's can be hard to see. At the end, it's hard to find the person in the disease.
Patients typically don't recognize loved ones and can wander away. They may bite and have trouble swallowing.
"Betsy has probably climbed over the threshold into the end stage as she can no longer do her own daily care," said her Group Health psychiatrist, Dr. Donna Lohmann. Her life now is "sadder than sad, because she's so young."
Despite the confusion in her brain, Betsy still manages random flashes of clarity and ready laughs. But the old Betsy has just about disappeared.
She can't care for herself, articulate her needs or comprehend more than simple instructions. She's unsteady and, sometimes, incontinent. Her behavior swings from playful to weepy or resistant.
Alzheimer's itself doesn't kill people. Death usually results from a health complication such as a fall, urinary-tract infection or choking.
"That said, people can live a long time — years even — at this stage," Lohmann said.
If there is inspiration in all this, it's that the Meyer family has stayed strong — "... by sticking together" and "... not keeping secrets from each other," said daughter Emily. "And, I think God helps."
Besides caring for Betsy over the past few years and raising their children, Jeff has been remodeling the house, occasionally pursuing a passion for hydroplane races and catching up on films checked out from the library.
And he seems to have discovered a deeper sense of self.
"I think it is what I was meant to do. A lot of my life was preparing me for the challenge of Alzheimer's disease and, ultimately, the challenge of caring for her — the film work, the disappointments and my ability to persevere."
The Meyer children are developing into forthright, responsible people. Alex majors in communications at the University of Washington, works the graveyard shift reading traffic reports on KOMO radio and speaks when he can for the Alzheimer's Association. He and his girlfriend live in Belltown with Betsy's sister, Elaine Harrison.
He has a gift for making his mom laugh and brightening her mood even if it means getting inches from her face and playing along with her babbling.
"I can't say nothing good has come from it," he says. "I've gained a better appreciation for my family ... I think it has made me a better person."
The gregarious Emily, a junior at Seattle Lutheran High School, is an honor student and budding actress who loves music and regularly attends church. "It has changed us," Emily said. "Kind of humbled us and made us a little more thankful for everything."
Still, it scares her when she forgets things or has trouble paying attention. "I don't want to end up like she's ended up."
Both Alex and Emily have been awed by their father's steady, loving care of Betsy.
"You can see him every once in a while just put his head down and take a breath," Alex said.
Millions of baby boomers are on the same hard path of caring for a loved one with dementia. It's estimated more than 5 million Americans suffer from Alzheimer's, a figure that could reach 16 million by 2050.
And it's not only an old-person's disease. An estimated 200,000 to 500,000 people in the U.S. have early onset Alzheimer's or other dementias, meaning they were diagnosed under age 65.
The disease especially is devastating when it strikes in the prime of life — stealing away a lover, parent, wage earner. The financial burden can be staggering because of lost income and the cost of care.
About four years after Betsy was diagnosed, Jeff was laid off by his bank. He retrained to be a 911 operator, thinking he could work at night while Betsy slept. But the job wasn't the right fit. Finally, when the extent of Betsy's needs became apparent, he stopped job hunting.
The family now lives on about $4,000 a month, including Betsy's Social Security disability, savings and help from the grandmothers.
"We're not looking in the couch for change," Emily said. "But we don't go out and buy $100 jeans."
No one foresaw late last year that Betsy was on the verge of a dramatic decline.
It's true that in November she at first didn't have a clue about how to blow out the candles on her birthday cake. But at Christmas she still managed to sing carols with the church choir.
Then in February she had a grand mal seizure when she and Jeff were visiting her mom in Portland. Betsy ended up in the hospital for two days, at times unable to sleep, go to the bathroom or feed herself.
"Will she ever be able to go home again?" Jeff privately wondered.
Such a seizure, caused by the deterioration of brain tissue, is not uncommon in late-stage Alzheimer's, Lohmann said. Jeff knew what it was right away, thanks to knowledgeable caregivers in his Alzheimer's support group.
But he still was overwhelmed by that old feeling of driving down a foggy road, not knowing what lay ahead.
After Betsy was back home, Alex found her saddened and shaken. Even so, in a moment of clarity, she reached out to comfort him: "It's going to be OK."
When she saw herself in the mirror, she comforted that person, too. "It's OK," she said, and cried.
As spring unfolded, Betsy grew stooped, suffered from insomnia and changed from a quiet person to a nonstop, uninhibited jabberer.
"It's you. It's you. It's you. I didn't see any ... I'm so sorry ... I'm too tired."
At the end of April on Alex's birthday, she blurted out-of-context comments in a Southern accent.
Against all advice, Jeff refused to place her on a waiting list for long-term care — "The minute I open that possibility it might happen sooner."
But then the sweet-tempered Betsy grew increasingly resistant whenever he tried to help her.
When she refused to shower, he resorted to sponge baths. When she became constipated, he charted her bowel movements. When she balked at drinking water, he coaxed.
"Here's some water. Go ahead and drink some water. Have a nice big gulp of water. Nice big gulp. That's pretty good."
Before every meal he helped her give thanks and, at bedtime, say the Lord's Prayer. As she drifted off, he might hear a thank you — "I think that's what helped me through a lot of this," he said.
A huge blessing was new medication that allowed her to sleep from 9 p.m. until early morning. That gave him time to work on the house or watch a movie. Sometimes he just relaxed and visualized lying down in a sunny field.
But Jeff didn't talk much with her anymore and no longer insisted that "she's still a good companion." A year or more ago, their sex life ended — "it just faded away and didn't happen and I gave up."
She'd also forgotten his name. Once when he was down on one knee tying her shoe, Betsy tenderly put her hand on his head and said: "You're a nice cat."
Jeff says: "I found it funny enough that it didn't make me cry."
But he did feel lonely.
"I'm sort of at the end of being young and I'm using up that time ... like some guy in prison," he mused. "If you get out at 50 or 60, how do you start over."
In mid-June, Betsy lost the ability to negotiate stairs, so her world shrank to the main floor and porch.
Jeff used a cordless phone hooked to a room monitor so he could work in the yard and hear the mood of her chanting inside.
Alex came over to stay with her so Jeff could attend support-group meetings.
Emily spent increasing time away or in the little computer room at home. A friend's mother gave her advice about boys and took her shopping. When she needed time alone, she took long walks and listened to her music.
"I feel like I don't see enough of my parents," she wrote in her blog, portions of which she shared with The Times. "I feel like I'm running away from my mom's disease."
Betsy's sister Elaine, like a second mother to the kids, worried things were getting too tough.
"Whenever you decide to place Betsy, I will support you in that decision," she told Jeff. "But I might think it needs to happen before you do."
Soon after, Jeff told Emily he wasn't sure how much longer he could take care of Betsy. And he reminded her about the "Do not resuscitate" instruction sheet on the refrigerator — that if mom had a life-threatening emergency, medics were not to try to save her.
On July 3, Betsy balked all morning about swallowing her pills. Then she did something out of character: punched Jeff in the chest and cursed at him. It was a big red flag. How bad was it going to get? Matters moved quickly after that. With a consultant's help, Jeff chose the adult family home in Renton; it's near his mother's place, so it would be convenient to see her as well.
July 13 was a watershed day for the Meyer family, with everyone focused on making sure Betsy was OK.
At 10 that morning, a medical-transport service put her in a wheelchair for the one-way trip to her new home. A sad but resolute Jeff rode with her, reaching back to pat her hand and sing to an oldie on the radio: "Roses are red my love. Violets are blue. ... "
Betsy stayed silent the whole way.
Elaine and Alex followed behind. Emily decided to go to her part-time job, then to a street fair. She gave her mom a big goodbye hug, then visited her the next day.
The first several hours at the new home were rocky. Betsy pushed the owner and angrily slammed her hand on the dining-room table, refusing to sit down. She finally ate in her room, the owner feeding her bites of baked chicken.
The rest of the time, she chanted about the "cherries and the berries" or cried.
"It was pretty bad and we were all worried it wouldn't work out," Alex said.
That night in West Seattle, Jeff moved back upstairs into their bedroom. The next morning he went out in the backyard to read the mail, closed his eyes and dozed off and on sitting up in a garden chair. "It felt real good. It was a warm day."
In recent days, Lohmann has adjusted the dose of a new medication to control Betsy's anxiety. The staff has taken her in a wheelchair to the deck outside where the owner's grandchildren and dog play.
The owner has braided her long hair in a new flattering style.
But she did bite the owner's husband when he tried to help her.
Family members visit every day. Sometimes they find her calm and happy and other times weepy or chanting.
Jeff's at peace. "I do feel I've done what I was expected to do. I haven't bailed out."
He's starting to honor her in small ways — by donating blood, which they used to do together, and painting a back room the melon color that she'd picked out.
Occasionally, he tears up, but there's been no full-fledged cry — yet. "It's not breaking my heart as much because how do you break a heart that's already broken?"
He expects to be a more involved dad to Emily. Especially last year, he had to miss a lot of her basketball games and school events because of Betsy's needs.
He'll spend today with both kids at the Seafair hydroplane races. Later, he plans to go see Betsy.
Marsha King: 206-464-2232 or email@example.com
Copyright © 2007 The Seattle Times Company
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