A Journey Through Dementia
Losing Betsy: The journey begins
Seattle Times staff
"So we've done this. And this."
Drop the kids at school.
Shelve books in the library.
She points to each finished task, pondering those that remain.
Pick up kids.
Subways for dinner?
Drop Emily at friend's.
Leave for the theater.
"Iris," the new movie about a woman's descent into Alzheimer's, could be hard to watch. But Betsy has decided: "If there's something I don't like, I'll close my eyes."
Not so long ago, Betsy Meyer was a trusted bookkeeper at a Seattle law firm. She balanced the firm's ledger and ran the office when the boss was gone.
Today, she can't add sums larger than single digits. She has trouble finding chicken-noodle soup in the grocery store where she's shopped for years. Sometimes, she leaves key ingredients out of favorite recipes. She no longer drives to faraway places — such as Bellevue. And finding the right word can be elusive, like "you know ... um ... the day for sweethearts."
Her salary, once a staple in the family income, disappeared two years ago, along with her job and random patches of her memory. That's when she was diagnosed with progressive dementia — probable Alzheimer's disease.
Betsy Meyer is 48 years old.
Her long hair, pulled back in a practical ponytail, reveals just a few strands of gray. She wants to travel the world someday with her husband Jeff, 50, a computer analyst at Bank of America. She teaches Sunday school and sings in the choir at Bethlehem Lutheran Church.
And she has two kids to raise: Emily, 11, a gregarious flute player who wears light-pink lipstick and iridescent blue nail polish; and Alex, 15, who's big on sports, talk radio and grunge music.
"The worst thing is the kids," Betsy says. "I don't know how long it's going to take before I won't know them."
FOUR MILLION AMERICANS — 100,000 in Washington — have Alzheimer's disease, the best-known form of dementia. Experts project about 360,000 new cases a year; by midcentury, an estimated 14 million Americans will have Alzheimer's, a progressive brain disorder for which there is, as yet, no cure.
Alzheimer's has long been accepted as an old-person's disease, a final journey back to the confusion and helplessness of infancy. But an estimated 400,000 Americans have "early-onset" Alzheimer's, meaning they've been diagnosed under the age of 65. Some are as young as their 30s when the symptoms appear.
The disease — horrible at any age — can seem more devastating when it sneaks up in the prime of life. Support services geared for the elderly often aren't available or appropriate for younger patients. Savings accounts are eroded and retirement dreams dashed. Lost memory in youth means lost careers and accomplishment, lost romance and sexuality, lost time to parent and, simply, lost time.
For Betsy Meyer, most of the losses are still ahead. No one can predict how fast they will come, or in exactly what form. Some people degenerate quickly. Others decline to a limited but functional plateau, where they settle for years.
But her disease will certainly shorten her life. And dementia may have contributed to her father's muddled memory in middle age, and to his death at 60. Children of parents with dementia are at increased risk compared with those with no family history; the degree of risk is not known.
Alzheimer's patients live an average of eight to 10 years after diagnosis, but it can be as long as 20 years. The disease tends to progress more quickly in early-onset patients, according to the National Institute on Aging.
The erosion is not abrupt but comes on little by little, making it easy to ignore. Betsy can go hours or days without a "fuzzy" episode. Her step remains sure, her humor intact. Offer a joke, and she's quick with a comeback and a chuckle.
And it's considered normal to grow forgetful as we age.
But she knows this: "It's a lot different than being normal. I'm not as talkative to people anymore. I guess I think I kind of scope things out a little more before jumping into something. Part of it is just remembering people's names. I know who they are ... but even close friends, I forget their names."
Anyone who's normal might say, "Gosh, that happens to me, too."
"Well," Betsy says, "they probably don't have brain cells that are dying."
Betsy can't change her destiny. So she says she wants to do what she can to help change society's awareness of dementia and its costs. "People don't want to be around people like me. I completely understand that."
After considering the cost to their own dignity and privacy, the Meyer family agreed to share their journey. Similar stories are being told across the nation, as dementia sufferers and their families lobby for compassion, research — and hopes for the future.
"I have the time and I have the dementia," Betsy says. "So it's something I can do to help this along."
DEMENTIA HAS A BEGINNING, a middle and an end.
In the beginning, it's hard to see the disease in the person — hard to recognize the fog of confusion that slips across the face, the fingers that move lightly across the lips searching for a word, the sentences that trail off, the long stall of "let's see.... "
Betsy is working through the beginning, when the losses can seem mild and random.
"She doesn't put the peanut butter in the washing machine," her husband, Jeff, is quick to note. "She hasn't done that weird kind of stuff."
But Betsy confides: "Sometimes, when I go in the kitchen, I have to stop and ask myself: Why am I here?"
In the middle stage, the symptoms become impossible to miss. The patient wanders off during a routine errand, or forgets to turn off the stove, or dresses all wrong for the weather.
Glimpses of Betsy's future can be gleaned from those who have traveled ahead of her, into that middle stage and beyond.
John Halvorson, a Boeing mechanic and talented carpenter, was diagnosed with likely Alzheimer's more than two years ago. Now 55, he spends his days putting simple puzzles together at his kitchen table in South Seattle and reading out loud from paperback novels.
His wife, Debbie, quit her child-care job with the Highline School District to care for him. Their 30-year old son moved back to Seattle from Phoenix to help.
But now the son finds it hard to visit the father. "What is it about Alzheimer's that makes everyone so damn uncomfortable that they have to joke about it, ignore it and not go around to see their dad anymore?" Eric Halvorson wonders. "Is it seeing their own mortality? Is it embarrassment?"
Even further down the path is Debra Muren, who lost her job as an intensive-care nurse at Overlake Hospital Medical Center when she could no longer perform her duties. Doctors believe she may have Alzheimer's and another form of dementia as well. She's 51 now, and cannot speak more than two or three words at a time.
Muren's 14-year-old son, Nick, doesn't remember a time when his mother was "normal." But he believes she loves him.
"I don't know if she knows my birthday or my name ... . But she knows me. She knows my face. She knows my attitude — my personality. She's lived with me my whole life. She knows what I am and who I am."
"I guess I try to believe that."
As the journey continues along its relentless course, here's where it will take Halvorson and Muren — and, in her time, Betsy:
They will become incontinent, unable to control their body, or remember how to use it. They will forget how to eat, or what food is. They will become bedridden. As their bodily functions shut down, they will fall prey to a disease such as pneumonia.
In the end, it is hard to find the person in the disease.
A WEDDING PHOTO hangs in the dining room in West Seattle. A younger Betsy and Jeff, both in sandals, stand together at the altar.
The bride made her long silk dress with the lovely cross-stitch border at the hem. She made the altar banner and 10 wedding cakes — lemon poppy seed and her famous Texas chocolate. The newlyweds left for a camping trip through Canada in an old ambulance Jeff bought to haul equipment for a film-making career he pursued early in their marriage.
Little has changed in 20 years. They still attend the same small church, now with their children, every Sunday. Betsy still doesn't wear makeup — "I tried it once. It felt like I was suffocating" — but has conceded to a bra. Jeff's thick stand of hair still looks like a lawn that needs mowing. Seven days a week, he's in Birkenstocks.
Their old bungalow is as comfortable as they are. The blue paint has faded. A porch step needs repair. The brass knocker beckons "Peace to all who enter here" — a greeting that proves sincere.
"They remind me of a couple of hippies who haven't left the '60s or '70s," says friend Linda Lin. "I mean that in a good way. They like things plain and simple. They're not materialistic."
Jeff is quick to note: He was never a hippie.
Betsy confides: "I was the hippie. But not for very long."
Their brand of activism is quiet, and focused on family. "If they identify something that needs a little extra care, they put the time into it," says Betsy's sister, Elaine Harrison of Seattle.
When Betsy was pregnant with Emily, she and Jeff took a class about raising two children. When they decided to add to the house, Jeff checked out a dozen library books to learn how to put up siding and drywall.
Now that the something that needs a little extra care is "probable Alzheimer's," their approach is much the same:
Learn as much as possible. Don't place blame. Do the best they can with what they have.
"It is a terrible thing," Betsy says. "But you know, there are lots of terrible things. Think about all the people killed Sept. 11.... "
IN LATE 1999, Betsy forgot to make a payment for the law firm. When the boss asked about it, she was at a total loss. Colleagues noticed that she sometimes looked "panicked."
That December, while rehearsing the church's Christmas play — a play she had directed many times before — Betsy couldn't help the children with their lines. Then one day in February, she forgot to pick Alex up from basketball practice. The coach had already chewed him out for being late that day. Now he didn't have a ride.
When his mom finally showed up, Alex wanted to be mad.
"Until she told me she was having trouble remembering some stuff and they were going to do some tests," he remembers.
Betsy remembers this: She was a person who had always done well. Now she was making serious mistakes — and had no idea why.
"I figured it was my fault," she says. "I thought if I just tried harder it would come out OK."
DEMENTIA CAN BE DIFFICULT to diagnose in middle age, when patients are physically vital and want to believe their problems are anything but this.
"The doctors ... don't want to believe it themselves," says Dr. Margaret Kitchell, a psychiatrist with Group Health Cooperative.
So other causes are eliminated. Is the marriage failing? Is stress to blame? Is the patient suffering from depression or some other mental illness? Is there drug or alcohol abuse? A brain tumor?
Families may endure uncertainty for months or longer waiting for an answer.
Jeff Meyer didn't want to accept the severity of his wife's decline. Lots of people forget where they parked the car or why they walked into a room.
"You can explain away a lot of these things," he says.
And Betsy tried to hide her anxiety. But every Sunday, as she prepared for the workweek, the fears would take over.
"I remember I'd take the bus and I'd walk up the hill," she says. "The dread started building with each step."
The demands of her job were precise and considerable. Her slippage became impossible to ignore, so her duties were simplified and her supervisor started to document her decline.
Betsy told her boss that she "couldn't remember things." She meant to discuss it with her doctor, but kept forgetting to make an appointment.
Then for three long days in May 2000, Betsy struggled to balance the firm's credit-card bill. She finally gave up in frustration and admitted the task — which she had performed without error for years — was beyond her.
ALZHEIMER'S CHANGES the brain in ways that can be seen only through a microscope. Plaques and tangles gradually choke off communication between nerve cells, called neurons, that are responsible for memory — of words, basic arithmetic, the cherished faces of people we love.
The disease was first described in 1906 in Frau Auguste D, a 51-year-old German woman who was called confused, scared and forgetful by her physician, Alois Alzheimer. In 1995, researchers discovered Dr. Alzheimer's long-lost file describing how Auguste had trouble cooking and handling money; she constantly repeated tasks she was asked to perform.
As recently as five years ago, almost anyone with symptoms of progressive mental decline was labeled an Alzheimer's patient. Now researchers are learning to identify a variety of dementias based on the symptoms a person exhibits.
In fronto-temporal lobe dementia, for example, early symptoms are organizational difficulties, not short-term memory loss.
Sometimes Alzheimer's is accompanied by another dementia such as Lewy body disease, which has some symptoms similar to Parkinson's. Then memory loss is exacerbated by hallucinations, delusions and difficulty moving.
A definitive diagnosis can't be made until the brain is autopsied after death. But researchers now say they can identify Alzheimer's with 90 percent certainty. A patient must show symptoms of short-term memory loss and impairment in at least one other area such as language, judgment or rote motor tasks — turning on the dishwasher, mailing a letter, using the remote control.
"Many of us, as we age, can't remember things like we used to. That's not enough to be Alzheimer's," says Kirsten Rohde, research nurse supervisor at the University of Washington's Alzheimer's Disease Research Center, located at the Veterans Administration of Puget Sound. As devastating as a medical diagnosis of dementia can be, it can also trigger insurance payments and give families time to prepare — financially and emotionally — for what has been called the long goodbye.
Betsy endured a barrage of tests during 2000: brain imaging, speech and hearing exams, a psychiatric evaluation, blood draws. Doctors ruled out a brain tumor, HIV, hepatitis, depression, head trauma, alcohol abuse.
A neuropsychological exam revealed problems in her auditory and visual memory and in the flexibility of her thought processes. The bookkeeper's math skills had dropped to sixth-grade level.
"I just kept thanking them that they were helping," she says. "I was relieved of the burden of work."
BETSY LIKENS LIVING with dementia to watching a film strip with some of the frames missing. Like when she couldn't find her car in the Group Health parking garage, or her purse to pay the ticket taker. Or when she held up traffic because she didn't notice the light had changed. Or when she couldn't follow directions to meet Jeff with the car — a "slap-in-the-face" realization that sent her to the bedroom sobbing.
For a full year after her diagnosis, the family simply worked around her lapses, refusing to give them a name.
No drug has been found to reverse the effects of dementia. But Betsy's Group Health doctor gave her free samples of Aricept, which the family couldn't afford and which were not available at the time on Group Health's list of medications. (That has since changed.) Aricept is in a class of new drugs that increase the supply of the neurotransmitter acetylcholine to the brain, and may slow the progression of dementia's symptoms.
The Meyers say it's hard to tell if the medication helps. But Jeff figures it's like chicken soup — it isn't going to hurt. And who knows how far Betsy might have declined without it?
Then, after an especially frightening incident last summer, her disease — whatever they called it — would no longer be ignored.
The Meyers had planned a vacation on Orcas Island. Betsy wanted to attend a grade-school reunion in Portland with her sister, so she'd join Jeff and the kids later.
Jeff helped Betsy write out step-by-step instructions for her trip: Once back in Seattle, take the Victoria Clipper to Friday Harbor and the ferry to Orcas. But when the family met the Orcas ferry, and the last person walked off, there was no Betsy.
"She was still in Friday Harbor, waiting for us to come," Jeff says. "Fortunately she had a cellphone."
The event helped push the couple into counseling, to learn how to talk about the losses sure to come.
If Betsy forgets something, should Jeff tell her about it or just fix the problem? Tell her about it.
Who will decide when Betsy stops driving? That would be a delicate issue.
How much should they tell the kids about Betsy's disease? Just answer their questions truthfully.
By November, the house was scattered with library books on Alzheimer's. Over time, a determination emerged to make the most of the grace period granted in the beginning stages of Betsy's disease.
They now work at creating good family memories — games of Uno and Scrabble around the dining-room table at night, a harbor boat tour on a sunny day, a summer vacation at Holden Village, a Lutheran retreat in the Washington wilderness that holds spiritual significance for Betsy.
TWO WEEKS BEFORE Christmas, Betsy sat at a window table in the neighborhood Starbucks and stared at the traffic on California Avenue Southwest. The cafe bustled with holiday music and whooshes of steamed milk.
But her mood was far from festive. She has been battling depression and anger at God. Her faith sustains her and she trusts she'll be taken care of. But, as her losses steadily mount, she knows her family will lose much of who she was as a wife and mother.
"All that's happening to me is also happening to them," she says. "I'm not the same mom I was."
Just the night before, they had to wait until Jeff got home from the night shift to help Emily with her math homework.
Emily prefers not to dwell on the frustrations and fears that come with her mom's illness. ("I thought it was something they could get rid of at first.") The vibrant 11-year-old would much rather chatter about her friends, her very fun birthday party with her favorite homemade spice cake, and her dream of growing up to be Britney Spears.
She has classmates who pray for grandparents with Alzheimer's. Now she prays, too, and fantasizes about "how I could help."
"Sometimes I think I want to put on a little show with my friends. And there will be offerings and donations. I'll put it in my savings account and if ever they did find a way to fight it off but it was expensive, there would be some money to help."
Emily, whose bedroom could win a messiest prize, also thinks she could do the dishes or maybe make dinner.
"That hasn't really happened yet," she chatters on. "And I haven't really washed any dishes."
At 15, older brother Alex has perfected a cool attitude and baggy-jeans slouch. He and his friends have a band called "Myth America" and two guitars, and have started to make music. He's also trying to get a start in talk radio.
Child experts say the demands of dementia can be especially hard on teenagers, who go through a natural stage of rebellion and self-absorption.
Alex says this: "It's just hard on everyone."
Since his mom got sick, he's taken more care with his behavior.
"It's harder to lie to her because by telling her a lie you're taking advantage of her more than if she remembered," he says. "You kind of watch your tongue and think about what you're going to do."
He learned, in health class, what happens to the brain when it's fried on drugs and understands it's similar with Alzheimer's. "It means a lot more than memory problems," he says. "It's more serious. The disease kind of takes them away pretty much mentally. I guess all the memories are still there, but there are holes.
"I think the brain kind of shrinks, too."
He wonders a lot about how much time they have left. He wonders if it's enough time for someone to find a cure.
BY JANUARY, the refrigerator door in West Seattle is papered with reminder notes, to-do lists and cartoons about memory loss that Betsy's mother clips and mails from Portland.
The kitchen calendar logs drill competitions, choir practices and Alzheimer's appointments. A slash is drawn through each day as it ends so Betsy will know how much of the week is left.
She still does the laundry, although it can take a week to finish and fold a single load. She naps frequently, a possible side effect of her medication. Once an accomplished cook and baker, she now sticks to simple meals such as tacos and spaghetti.
Jeff has taken over the family finances from his bookkeeper wife, and the grocery shopping.
Throughout their married life, Jeff and Betsy shared duties equally. He worked the night shift at the bank and took the daytime parenting chores: pre-school visits and chaperoned outings. She worked 30 hours a week at the law firm, taking over when she got home so her husband could sleep, and having dinner ready before he had to go back to work.
The couple still parents together. It was Betsy who insisted Emily couldn't ask a friend for a sleepover until she cleaned her room.
But as Betsy's abilities decline, the balance of the marriage tilts.
"I feel I'm not quite as equal," she says.
Jeff is quick to come to her defense: "For many years Betsy was earning more money than me. She's got the college degree and I don't."
Betsy is just as quick to come to his: "He's smarter than me."
A shadow of sadness crosses Jeff's face as he looks at his wife: "I don't feel the need to be this superior guy. But it's sort of happening by default. It's not that I'm getting any smarter. It's just that you're going backwards."
A meticulous planner by nature, Jeff says he feels guilty, at times, for not doing more to prepare.
"I'm kind of real shortsighted right now," he says. "I don't see any future ... everything is just kind of gray."
He feels burdened, at times, that his household responsibilities have increased so much, leaving little time for his own projects.
"There've been some changes in me. I don't know if melancholy is the right word. But I've probably not been as enthusiastic since she stopped working."
He worries, at times, that dementia will rob the sweetness that has always marked his wife's personality.
"What if she gets sarcastic and cranky? That will be hard for me."
Does he still get the emotional sustenance a husband expects from a wife?
"I think so. Although I sort of have the feeling that ... it could be slipping away. In my mind I know that's going to happen."
But he's quick to note: "She's still a good companion."
For her part, Betsy gets impatient with Jeff, at times, for not understanding how she feels. But how could he? And he gives her more hugs these days and takes care of her in little ways that he didn't used to.
"He's a good man," she says.
BETSY'S twice been denied Social Security disability. She appealed, in person, to an administrative-law judge in January.
In order to meet the strict criteria, an applicant must prove he or she is no longer able to perform a job — any job. If Betsy can't keep a company's books, perhaps she could be a night clerk or a telephone solicitor?
Meanwhile, Jeff's company has been hit with layoffs.
"We're on the edge," she says.
So a family that has never been extravagant is looking for ways to cut back. Whenever possible, they drive their second car — a 1985 Volkswagen with 225,000 miles on the odometer, a clothes hanger for an antenna and a back door that doesn't open from the outside. They limit use of their 1996 Caravan, figuring it might be their last new car.
Their church and family help pay tuition for the children at Lutheran schools. Betsy's mother sent money for the family's vacation this summer. "I almost want to take up smoking so I can quit to save money," Jeff says. "We don't drink, so I can't stop drinking. We don't even have cable TV, so we can't cut that out."
EVERY SUNDAY MORNING, the Meyers pile into the van for a breakfast of homemade waffles at Jeff's parents. Ingrid and Alex Meyer emigrated from Germany in 1947. Their small house on a windy hill in Skyway is filled with photographs of their children and grandchildren.
After breakfast, they all go to Bethlehem Lutheran, where Jeff met and married Betsy.
The couple was one of the few who brought children into the aging congregation, grown so small over the years that several rows of pews were removed. Betsy helped restart the Sunday school with drama and crafts, winning an award as teacher of the year. Jeff serves as an assistant minister. Both sing in the choir.
The church is as familiar as a favorite blanket. People noticed when Betsy forgot meetings and couldn't find her place in the hymnal. Some wondered if she'd suffered a nervous breakdown. So before a service earlier this year, Jeff and Alex held an impromptu session explaining Betsy's diagnosis — and prognosis — as best they could.
Slowly, the Meyers have told more and more people about her dementia. With the telling comes support and surprise, discomfort and disbelief. One mom at the kids' school now seems to avoid Betsy. Doctors, lawyers and insurance executives who call to discuss her status try to bypass her and ask for Jeff. People talk about her in the third person, "when I'm the first person."
So the Meyers wage a gentle crusade to remind people that Betsy is still here. Now when people phone, the first thing Jeff says is this: "Just a minute. I'll get Betsy."
ALZHEIMER'S AFFECTS one in 10 people over age 65 and nearly half of 85-year-olds. While researchers can't yet predict if and when someone will develop dementia, they have isolated age and family history as key risk factors.
Scientists at the UW have found that a minority of early-onset cases are from families that have one of three genes clearly associated with the disease.
In all other early-onset cases, "the picture isn't as clear," says Dr. James Leverenz, associate director of the Alzheimer's Disease Research Center's clinical core. But scientists suspect genetics play a role in many of the cases.
Researchers are working with healthy people to see if dementia can be prevented with treatments such as estrogen, nonsteroidal anti-inflammatory drugs, Ginkgo biloba, Vitamin E and drugs such as Aricept.
Clinical trials are being conducted on medications called protease inhibitors. Medications also are being tried to treat related behaviors — agitation, psychosis — without overly sedating the patient.
Betsy decided to join studies at the UW research center, figuring they offer a chance to get a second opinion and care from a specialist. And maybe she'll get lucky with an experimental drug.
Jeff is quick to note the reality: "We don't have any high expectations."
This spring, doctors at the research center asked Betsy to draw a clock.
She drew a circle and wrote "noon" at the top. She placed the hours correctly and labeled them: 1:00, 2:00, 3:00 — a little peculiar but not really wrong.
Then came the hands.
"She put the lines outside of the circle," Jeff says. "It looked like there was a kindergarten person trying to do that....
"That was kind of brutal."
BETSY IS ONE OF FIVE children raised in a staunchly Lutheran household in a lower-middle class Portland neighborhood. She was the sweet, studious one, by some accounts the family peacemaker.
The family is no stranger to the ravages of dementia. Betsy's stepfather, Ernie Colby, is 84 and in the middle stage of Alzheimer's. He can't hold a conversation, wears diapers and puts his feet in his shirt sleeves when he tries to dress himself. Betsy's mother keeps the door locked at the couple's Portland home so he doesn't wander off.
When her daughter started to show symptoms, Esther Colby tried to believe it was menopause or depression. Now she mails her jokes about memory loss and articles about research and treatment.
"She's going to have some real rough times," she says.
Now one of Betsy's sisters grieves and wonders whether she, too, should be tested for Alzheimer's. ("If I lose my keys, I think, is this a family thing?")
Another sister worries less about what disease she might inherit than about what she might lose. ("If I lost me, I wouldn't know it. But it really upsets me that I might lose Betsy.")
Betsy's brother has little faith in doctors and wishes she would explore naturopathic healing. ("I believe people can be misdiagnosed. I think it's more of a mental thing than a physical thing.")
But it is Elaine Harrison, Betsy's elder by seven years and with no children of her own, who will help care for her baby sister when the time comes.
"Early on, we were hoping there would be some little physical thing in there you could take a picture of and fix," says Harrison, who works for the Lutheran Synod in Seattle.
Now Harrison has turned her attention to learning what Betsy wants — while Betsy still knows.
If it someday becomes too difficult to groom Betsy's long hair, it might be best to cut it off. But if Betsy says, "Please don't ever do that," Harrison would make every effort not to.
And how long will Betsy want to go to church? "I think she wouldn't want to be on display," Harrison says.
AS BETSY'S DESIGNATED caregivers, Harrison and Jeff attend a support group in Redmond once a month. Newcomers can find the groups unsettling, the talk harsh. Most of the participants have lived with dementia for years, and don't mince words. They laugh a lot, but theirs is a special brand of humor — "Alzheimer's humor." They celebrate the blessings of unisex family bathrooms at airports; without them, their loved ones might get lost going in alone, or end up in a stall for hours, pulling their pants up and down, up and down.
They share stories of the loss of friendship and of marriages that die long before spouses do.
"We run around with our wedding rings on, but we're not married," says a man whose 47-year-old wife has been in a nursing home for 18 months and doesn't recognize him or their daughter.
But they also say that what the disease delivers is not all bad, that it can offer a kind of grace, especially in the early stage. Life becomes simple. Arguing stops. Spouses treat each other with more kindness.
"In some ways, I had more of a marriage," a woman says. "The closeness between us became deeper."
No matter what their individual story, they all advise: Stay in the moment, stay positive. "If you focus on what you've lost, you get robbed a second time," the woman says. "You need to focus on what you still have left."
BETSY WORKS SLOWLY through the list Jeff left her, checking tasks off as she goes. If she hustles, there'll be just enough time to run Emily to the store to buy valentine cards and eat dinner before they have to leave for the movie.
"Iris" chronicles novelist Iris Murdoch's descent into Alzheimer's disease. Jeff got free passes to a sneak preview for himself, Betsy and Alex. Emily will go to a friend's house for the evening.
Betsy threads carefully through traffic on California Avenue. But the main entrance to the store is blocked by orange construction cones. It's confusing.
"Which way do I turn?" she asks Emily.
"Just go back down that way. I'll tell you," Emily points.
"What way, Em?"
"Go down the hill like you're going back home," the 11-year-old directs. "We're not. It seems like it, though."
When they finally get to the store, they don't like the valentines. At another store, they run into the mom of a Camp Fire Girl who has been trying to collect candy-sale money from Betsy for two days.
The woman gives Betsy an exasperated smile. They set yet another delivery date.
"Em, be sure to remind me," Betsy says.
Back home, there's no time to fix dinner. Jeff steps in. "I'll take care of delivering the money and Emily," he tells Betsy. He tells his wife and Alex to order a pizza.
A few hours later, mom, dad and son sit side by side in the Harvard Exit theater on Capitol Hill. Betsy is silent as she watches Murdoch decline from a fiery and successful young author into a demented old woman who can't string sentences together. By movie's end, Murdoch can barely speak. She is placed in a nursing home, where she soon dies.
Quiet sniffling can be heard in the dark theater. Jeff reaches over and pats his wife's leg.
Betsy forgot to close her eyes.
The day after the movie, Betsy hung the movie poster in the family room. Now Iris looks down at her, part kindred spirit, part guardian angel.
"It makes me feel less alone," Betsy says.
The Social Security Administration has approved Betsy's application for full disability, and the private insurance company will keep making smaller payments. In all, they will receive slightly more than 60 percent of her former salary.
After assessing Betsy's tests, a doctor at the Alzheimer's Disease Research Center decided her deficits are more consistent with a fronto-temporal dementia or Pick's Disease. Alzheimer's is much less likely.
It matters little to Betsy. The treatment, course and cost of her illness will be much the same.
"It's just another name," she says. "It doesn't sound like one's better than the other."
So at home with family and friends, Betsy and Jeff still will call her problem Alzheimer's.
"If you're visiting New York and someone asks where you're from, you don't say Renton, Washington," Jeff says. "You say Seattle."
One afternoon, after driving Emily to school, Betsy announced she was done driving.
"I didn't want to be the cause of anyone's demise," she says.
Not long ago, Betsy — who couldn't draw the hands on a clock — insisted on making her famous Texas chocolate cake for Alex's 15th birthday. Jeff was quick to note: "She did it flawlessly."
Betsy confides: "It's the cinnamon."