Sunday, July 28, 2002 - Page updated at 12:00 AM
Family's private anguish touches heart of public
Seattle Times staff reporter
Betsy Meyer sits at her usual spot at the dining-room table in West Seattle and thinks about the past week.
"Crazy," she says in wonder. "I guess I don't pinch myself anymore ... but unbelievable."
Two years of a private family matter had suddenly been transformed into a public story. The family has since been overwhelmed with messages and offers of help, from friends and strangers alike — and is headed for national TV.
Last Sunday, Betsy and her family were introduced to the public in The Seattle Times. The 48-year-old wife and mother of two children is in the first years of living with incurable, progressive, early-onset dementia. She has been forced to quit her job as a bookkeeper and volunteered to stop driving. Her housekeeping abilities are slowly eroding and during "fuzzy" episodes, she struggles to remember names or simple words.
Betsy and her husband, Jeff, spent two years adjusting to her diagnosis and only recently began telling outsiders — an Alzheimer's support group, members of their family, fellow church members, friends. Like most in their situation, they were concerned about the stigma of dementia.
But now their private struggle is public and about to become more so. Monday, ABC television called from New York, requesting an interview with the Meyer family.
"It's 'Good Morning America,' " Betsy yelled outside to Jeff, who was up on scaffolding painting their modest bungalow.
They expect to be on air Wednesday morning. (KOMO-TV/ABC, 7-9 a.m. PDT.)
They will face the television cameras shored by the support they've already received from neighbors and strangers alike.
In the days after their story appeared in The Times, the Meyers received dozens of e-mail messages and calls offering encouragement, prayers and suggestions for treatments ranging from special medication to playing dominoes.
Many who contacted the Meyers shared their own stories about coping — as patient or caregiver — with Alzheimer's and other forms of dementia. Four million Americans, 100,000 in Washington, have Alzheimer's, the best-known form of dementia. An increasing number are being diagnosed early, in their 40s and 50s.
Monday, The Times published the stories of John Halvorson, 55, and Debra Muren, 51, who also have forms of early-onset dementia but are further along in the disease's relentless progression.
In response to her story, Betsy Meyer received a note from a former colleague at the law firm where she once worked. "It was an amazing act of generosity on your part to share what you've gone through so far," the colleague wrote. "I wish your family strength and love and wisdom."
A stranger wrote: "It helps me in my struggle to understand what is happening to my mom."
And a neighbor offered whatever help the Meyers need.
The decision to brave national TV was a considered one for the Meyers. They held a family meeting to weigh the merits and risks: Would they be treated with dignity? Would Emily, 11, who doesn't like airplanes, agree to fly? Could Alex, 15, miss a few driver's training classes?
At the same time, they could become ambassadors for a cause that has become vital to them.
And they could see New York — a first for Betsy and the kids, and something they wouldn't be able to afford on their own. Betsy wants to see the Statue of Liberty and, maybe, Ground Zero, the memorial site of the former World Trade Center towers.
The Alzheimer's Association supported a TV appearance as a chance to spread knowledge about dementia but cautioned the Meyers that airports and hotels can be confusing for people with memory loss; they suggested Betsy wear identification.
The decision to tell their story makes the Meyers part of a growing movement of people with dementia and their families who are no longer willing to hide their affliction. Dementia patients have testified before the U.S. Senate to lobby for research funding, have appeared on national TV and written first-person accounts of feeling their minds slip away.
"People are realizing they can talk about this, and there's not the kind of stigma attached to it that there used to be, although there are still many people in denial for themselves and their families," says Helen Payton, development director with the local Alzheimer's Association.
Editors at ABC-TV say the Meyers' story is a "classic" for the morning program.
At the network's request, Jeff will take home videos to New York, some from the family archives and some he shot last week especially for the show: Betsy playing solitaire and cooking dinner while Emily sets the table; Betsy putting a jigsaw puzzle together, an activity designed to keep her mind sharper; Alex unloading the dishwasher.
"Which he doesn't do very often, even when he's asked," Betsy says, laughing. "He'll probably use that tape to prove, 'See? I do it.' "
Any qualms the Meyers have are countered by the hope they can expand understanding about dementia. "I don't want to be up there selling soap or anything," Betsy says. "I just want to do what needs to be done."
And if she stumbles on national TV and forgets a word or can't complete a sentence?
"That's life," she says. "They've gotta take me as I am."
Marsha King: 206-464-2232, or mking@seattletimes.com.
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