A Journey Through Dementia
Losing Betsy: A family pulls together
Seattle Times staff reporter
BETSY MEYER stands in the dining room of her modest West Seattle home on a late November evening, surrounded by her husband and two children, her sisters, her mother-in-law and some special friends from church.
The others start to sing. As if on cue, Betsy smiles and sings along.
Happy Birthday to you.
Happy Birthday to you.
Happy Birthday, dear Betsy ...
Betsy stops midnote. Her hand flies to her mouth.
It's her birthday they are celebrating.
She had forgotten.
It started a little over four years ago, with numbers. Then it was the elusive search for a simple word. What to put in a cake she had made countless times before. When to turn at a busy intersection. Last November, it was her birthday. Last month, how to find the bathroom in a hotel room.
And someday, barring a medical miracle, it will be how to eat. Her husband's face. Her children's names.
The beast, as Betsy has come to call her dementia, is whittling away at her memory, her once-fine mind and her life.
"Well ... you know ... I just can't do what I was able to do and ... you know I forget. Uhh. It's more than forgetting."
BETSY MEYER WAS JUST 46 — a trusted accountant with a Seattle law firm — when she started to make simple math mistakes and forget to pay her employer's bills. In 2000, after a battery of tests, she received an astonishing diagnosis: incurable, progressive, early-onset dementia — probable Alzheimer's disease.
It would kill her early, bit by bit.
Along the way, it would rob her of her memory, her ability to function mentally and physically, her very personality.
And, because she is such a young victim, her disease would rob her family of essential income, her children of a guide through adolescence, her husband of a partner and lover.
As baby boomers age and life expectancy rises, dementia threatens to become epidemic. Four-and-a-half million Americans, including about 100,000 in Washington state, have Alzheimer's — the most commonly diagnosed form. By midcentury, the number of Alzheimer's patients is estimated to reach as high as 16 million nationally.
As those numbers grow, so does the realization that dementia is not just an old-person's disease. An estimated 450,000 Americans have early-onset Alzheimer's, meaning they've been diagnosed under the age of 65. The average Alzheimer's patient lives eight to 10 years — some as long as 20 — after diagnosis. But studies show that the disease can be more aggressive in early-onset patients. And with more future ahead, there is more future to lose.
Younger sufferers also seem to retain more insight into what's happening to them, according to some doctors. That can be a blessing: Early-onset patients can make conscious use of the time they have left.
It also can be a curse: They can watch themselves erode.
SO IT HAS BEEN FOR BETSY MEYER, who agreed, with her family, to tell the story of her terminal illness as it unfolds. "I have the time, and I have the dementia," she said. "So it's something I can do to help this along."
The beginning of the Meyers' journey was chronicled in The Seattle Times in July 2002. Since then, life has moved forward — son Alex got his driver's license, daughter Emily entered puberty, two grandfathers died, husband Jeff lost his job in the depressed economy and is trying a new career.
Through it all, Betsy slides slowly backward.
Once the primary breadwinner for her family, she was forced to leave her job more than three years ago, and to stop driving two years ago. Once an award-winning teacher at Bethlehem Lutheran Church, she no longer completes thoughts well enough to lead a Sunday-school class. Once an accomplished seamstress and cook, she now needs step-by-step coaching to turn on the dishwasher. She draws a blank on the word "pickle" when ordering a sub sandwich.
Recent tests show that Betsy's cognitive and reasoning abilities have declined so significantly that it is becoming dangerous to leave her alone in the house. In an emergency, such as a fire, she might not know what to do.
All this as her children enter their turbulent teens and her husband strives to keep the family secure. Jeff Meyer, 52, spent more than a year unemployed after he was laid off from his night-shift job as a computer analyst at a bank. He went back to school and, just recently, landed a probationary job as a 911 operator for the King County Sheriff's Office. That would be a tough-enough transition without an extra anxiety most husbands his age don't carry:
Who will take care of his wife?
"The fact is I have to work," Jeff says. "It's not like some people who are retired. They can make this their project."
Then there are the kids:
Alex turns 17 today. He is a bright, funny, aspiring radio disc jockey who handles his mother's disease with that's-how-it-is pragmatism. Emily is 13, a vivacious dancer and basketball player who diverts worry about her mom into chatter about school and music and her latest secret crush.
As Alex and Emily watch their mother reverse to infancy, they are being fast-forwarded into adulthood, taking charge of after-school care so their dad can work.
"Things are not really looking good at this point," Jeff Meyer says. "There are some major challenges ahead of us."
WHEN BETSY MEYER FIRST SPOKE publicly of her dementia two years ago, her decline seemed slow and spotty. "I've kind of got the picture," she said then. "But there's holes in it."
She was able enough to handle everyday matters — make simple meals, do the laundry, clear a space in the house for crafts — but aware enough to know what lay ahead: "The worst thing is the kids. I don't know how long it's going to take before I won't know them."
The family has tried to make the most of their time together, playing board games and visiting special places, such as Holden Village, a Lutheran retreat center in Eastern Washington. That's where Betsy spent summers as a teen maturing in her spiritual life — and where she wants her ashes scattered.
After breaking the silence of dementia through the newspaper, the Meyers were overwhelmed with the response — prayers, praise for speaking out, offers of help. ABC-TV called from New York: Would they retell their story on "Good Morning America"?
Betsy is a quiet woman — almost shy. Her passions have always been church and family, not politics or activism.
But by speaking out, she joined a growing movement of dementia patients who refuse to hide their disease. They are testifying before Congress, creating Web sites, arguing the need for funding to support research, subsidize expensive medications and pay for long-term care, especially in the home.
The Meyer family also notes a personal benefit to going public.
"It's made life easier," Jeff Meyer said. No longer did the family worry about awkward silences from friends who didn't know what to say or the ignorance of people who treated Betsy as if she were already gone.
"She is still very much here," Jeff said at the time. Friends and relatives "don't have to go to a home somewhere and just stand there and feel uncomfortable. They can still talk to her and enjoy being with her."
And describing their experience to the public forced the family to face tough issues they might otherwise have avoided. Like the day Jeff and Betsy told the kids that mom probably wouldn't live to see her grandchildren.
"It's hard to know that there's an expiration date," Alex says.
AS BETSY'S MIND RETREATS, so does her world. She watches the old TV in Alex's bedroom because it's too hard to work the newer one in the living room, even though Jeff has marked the buttons to push with pieces of blue tape. She flips through magazines but doesn't really read. She no longer plays computer solitaire.
Naps are twice a day. Walks are in a straight line close to home so she can find her way back. Betsy still does the family laundry perfectly, but Jeff hopes the old washer and dryer hold up; he doubts Betsy could learn to operate new machines.
Rather than focus on losses, the family adapts. For example, Betsy and Jeff work as a team to make dinner. She needs his organizational directions to heat a can of soup but remembers enough to be his cooking adviser.
"It's something for us to do together," says Jeff.
The family keeps what routines it can: Sunday mornings still mean waffles at Jeff's mom's house before church. Wednesday evenings still mean choir practice.
"I think choir is good for me," Betsy says. "Being with people and the music."
Once a month, she attends a support group for people with memory loss — although she seldom remembers what they talk about: "I guess we need each other and to be in a place that's safe. Although no one's ever yelled at me for being an Alzheimer's patient."
She remains affectionate and funny. After a recent vacation to California, the Meyers were asked if they held hands on the beach.
Jeff's low-key nod: "I think we did occasionally."
Betsy's quick retort: "You wouldn't want to do too much."
But her humor has grown less sophisticated. She is increasingly passive, quiet and confused. Conversation is hard to sustain. She gets stuck climbing up a thought and needs a push to finish a sentence or a word.
BETSY, WHAT'S THE WORST THING about this disease?
"Not being able to do the things I used to ... I miss doing crosswords. Not crosswords, cross-stitch, which I used to do a lot of and give to people."
Do you still have hope?
"Well, if the right medication and stuff gets better. But I'm not banking on it really."
Do you ever get mad?
Her signature humor sparks.
"Not with all the stuff I get from the doctors," she says, referring to her antidepressants.
Then her voice grows soft:
"Well ... I get mad at God ... sometimes. But uh ... I know he's there."
And sometimes, she admits, she feels sorry for herself.
"And I cry. But I figure I've earned that."
IT'S IMPOSSIBLE TO KNOW exactly what's happening inside Betsy Meyer's brain. The cause of dementia remains a mystery. An absolute diagnosis can't be made until after death, with an autopsy.
But science's best guess is that abnormal proteins are deposited, causing cell loss in certain regions. The loss of those cells, along with the brain's attempt to repair itself, causes behavioral and cognitive disturbance.
Betsy has volunteered for studies at the University of Washington's Alzheimer Disease Research Center. Her physician there, Dr. James Leverenz, says her symptoms indicate Alzheimer's disease. But he hasn't ruled out dementia with Lewy bodies, which blends the symptoms of Alzheimer's and Parkinson's disease.
Those distinctions may matter someday to science, as it determines the root cause of various forms of dementia and how to best combat them.
But for today's patients and their families, the devastation doesn't wait for a name.
In Betsy's case, her progression through the stages of dementia seems normal — not especially slow, not especially fast — as she moves inevitably from mild to moderate to severe to profound.
Now she is moderately impaired. As her dementia grows severe, she will struggle more with manual dexterity and motor functions, Leverenz says. She may have difficulty with "complex self-care," such as personal grooming. Rather than just having trouble finding words, she will have trouble understanding their meaning.
Drugs such as Aricept, which Betsy takes, seem to temporarily blunt or slow symptoms in some patients. The drug increases a chemical in the brain, acetylcholine, that helps cells communicate with each other.
Memantine — new on the market this year — is the first drug aimed at treating people in the late-moderate to severe stages of Alzheimer's disease. As Betsy deteriorates over the next year, adding memantine to her regimen might boost her thinking, improve her behavior and stabilize her ability to do day-to-day tasks, such as brushing her teeth and hair.
And it's not foolish to hope, Leverenz says. No one knows when research will find the answer that "could be it," he says. Betsy probably has many years of life left.
The quality of that life will be in the eye of the beholder.
BETSY, DO YOU think about the future?
"Little bits at a time."
What do you think about? Her voice quavers. It's the kids.
"I'll miss them. And, Alex. Well, Alex is my special buddy. And, Emily. I love her, too. Emily helps me."
THE GAPS IN BETSY'S MIND are making her more peer than mother to her teenage children.
Stark evidence can be found in Emily's bedroom, the tiniest room in the house, now piled so high with tossed-off clothes, books and the stuff of a young teenager that the carpet and bedspread are often buried.
Jeff insists Emily's room would have been this way no matter what: He and Betsy were never meticulous about housekeeping. They still try, as a couple, to enforce some rules: Emily can't have a friend spend the night until she cleans her room.
But Betsy's sister, Elaine Harrison, sees the chaos as one more symptom of dementia.
The old Betsy — the one who designed and sewed her children's Halloween costumes — would have found ways to make the bedroom more attractive.
The old Betsy would have nudged and nagged and teased her daughter to keep the clutter within reason.
The old Betsy would have taught her daughter how to sew and judge friends and stand up for herself.
But now a sewing kit that Betsy put together long ago for Emily sits untouched; Betsy has forgotten how to use it. And when a girl at school told Emily, "If you hang around me, you'll be more popular," Betsy couldn't coach her daughter about self-respect.
Asked about her mother's disease, Emily talks instead of boys and the looming world of high school. She's in seventh grade now, growing taller by the day and living life in the moment. That means dance classes and track after school, the star role in the school play, flute practice, marathon phone conversations and a successful lobbying campaign to get her ears pierced.
"You don't look into the future," she says. "You kind of enjoy that day like it's the last day."
Her dad's new work hours and the fact that her mom can't drive have forced Emily to be more independent. Alex drives her to school — she likes listening to his "wild rock" — but she has to find her own rides to after-school activities.
"It's like I'm growing up faster than my friends," she says. "Now I'm kind of helping my mom instead of my mom helping me."
But Emily says it's not worth making a big thing about: "You just pretty much deal with it and don't really think about it. If you don't think about it, you might not notice it, and you might think of her the same as you did before she got it."
Until she remembers how mom used to make birthday cakes and hide Christmas presents. Until she remembers that her mom "might die before most moms die."
Emily wants to be an entertainer when she grows up, and raise money for Alzheimer's research.
She has come home from school twice this year vomiting from migraine headaches caused, her doctor says, by stress.
EMILY MIGHT IGNORE the catastrophe in her room. Alex might not beg to help with the dinner dishes. But those things can pale in the face of dementia.
"I wouldn't want them to be doing the dishes and laundry and cleaning the house, but unable to deal with the emotional part of this," Jeff says.
Both children continue to treat their mother with patience and sensitivity. They can often be seen slipping an arm across her shoulder with affection, not pity. Their mother is usually happy and sweet — her true personality helped now, perhaps, by antidepressants.
"Even if she's talking about the disease, she can kind of laugh it off," says Alex. "You can tell she's kind of sad about it. But it's not dragging you down."
Alex is the family's backup chauffeur and watches over his mom and sister when his father is at work. One morning when Betsy woke up with a urinary-tract infection, Alex calmly phoned the nurse and described her symptoms — Betsy couldn't find the right words — then picked up a prescription for antibiotics.
In return, he's been granted considerable freedom. It could be that Betsy's dementia has blunted her tendency to worry; it could be that Jeff is too distracted with trying to run the house, pay the bills and start a new career.
But Alex is trusted enough to roam Seattle at night by bus with a friend — his way of "getting out there" and seeing the city. His way of helping at home is to do what he can and not ask for too much.
Alex dreams of a future in radio and becoming "a pop-culture icon." He has his own Web site, where "The Alex Meyer Show," created in his basement, is online ("listener discretion advised"):
"From Seattle, it's the world-famous Alex Meyer show ... that's M-E-Y-E-R ... like the grocery store not the sausage."
Alex also announces daily events over the intercom at Seattle Lutheran High School, engaging in glib patter, blasting his favorite music through the halls and pushing the envelope of acceptability.
If life were different — if life were normal — he'd leave the state after college for a dream talk-radio job in some far-away city.
"I'm always waiting for the future," he says. "Sometimes, at this age, it's all you really have ... hoping it'll get better, later, out in the real world."
But Alex has learned a lot about duty and love. Especially love. He'll stay close to home for now.
"I want to be around her as much as I can on the way out," he says. "She's my mom. I love her. I'm not just going to abandon her.
"Especially, in a time ... like that will be."
AS CERTAIN as that time is coming, Jeff Meyer says his family has little choice but to deal with what's in front of it, right now.
"It's like I'm driving in a fog and I don't really know what those next turns are going to be," he says.
So he tries not to look too far ahead, tries not to plan his life around the terrible things to come and tries not to dwell on the finer things that might have been.
"I'm not letting every bit of this make me sad and tearful all the time," he says. "I'm just sort of used to it. It's not like you're anticipating something. It's already happened."
The immediate challenge is keeping things together at home: Figuring out what the kids will eat; keeping up with their appointments; picking up Betsy's chores as treasurer of the school parents group, managing a tight budget.
"I'm not some Susie homemaker," he says. "The whole food situation is a disaster."
He tried buying favorite foods in bulk, but the kids soon tired of the same fare. He has resigned himself to easy dinners on the run, like pizza and microwave teriyaki bowls.
"When we can get together and have a real meal, we will," he says. "When we can't ... oh well."
For much of the past year, Jeff faced the added pressure of unemployment. When he landed a position as a 911 operator — two months after the severance from his old job ended — he decided to celebrate. He whisked Betsy off to Los Angeles — their first vacation alone together since the kids were born.
Betsy stumbled a bit more once away from the familiarity of home. The hotel-room mirrors were so disorienting she couldn't find the bathroom. She walked three steps behind Jeff. She had difficulty with restaurant menus.
"She pretty much required all my attention," Jeff says. "I don't mean that in a negative way."
That was predicted by members of Jeff's caregiver-support group, which he attends monthly with Betsy's sister, Elaine. It's a group that Jeff has felt uncomfortable with, at times; others' situations seemed so much worse. But it grounds him in reality and helps him focus on the present.
So on the last night of their vacation, Jeff and Betsy had a sunset dinner at the beach.
Was it like it used to be?
"It's like it is now," says Jeff. "I don't know how it used to be. It was fun with some adjustments."
AS THE FAMILY ADJUSTS to Betsy's evolving needs, they also must adjust to new work rhythms. Jeff has to pass several tests over the next 18 months to become fully certified as an emergency dispatcher. The job comes with stress, odd hours — and fully paid health insurance.
His salary, with Betsy's Social Security disability benefits, will bring in about $50,000 a year.
"Nothing particularly big and lavish, but adequate to get by on," Jeff says.
When Jeff recently worked the day shift, Betsy was alone until midafternoon.
"At first I didn't know what to do because everybody would be gone," she says. "But I got used to it. I don't cry so much anymore."
Jeff now will work evenings, so he can be home during the day. Then, unless Aunt Elaine comes over, the kids will have to fix dinner. If Jeff someday works the graveyard shift, the kids will be on call through the night, unless Elaine stays over.
"This sounds harsh, but they are intellectually her superiors," Jeff says. "They need to respect her as their mom and help her."
Despite concerns about Betsy's safety, Jeff says she's fine, for now, at home. She takes care of herself in every way, and he doesn't want to limit her freedom before he has to.
And when the time comes that she needs help with her most intimate needs? Well, Jeff says, he changed the kids' diapers when they were little.
"I don't want to belittle the challenges before me," he says. "But there are a lot of unpleasant things. Once you start doing it, you get used to it."
THAT'S SOMEDAY. Today, Betsy remains a good companion and friend, Jeff says. She's still someone to share a laugh with, still "a real personality" who listens to his worries and commiserates, even if it's not clear she understands everything he says.
"I really seek those moments where she can be an equal," he says. Like when she picked out a wonderful orange paint for the remodeled back room.
So he counts his blessings — the family is together, the kids are doing OK — and prays every day about what lies ahead.
"You know, there's this deal that God only gives us the challenges we have the strength to master," he says softly. "I just hope it's not going to be too hard on her. I just hope the rest of us will have the strength to support her and support each other."
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