Mike Fancher / Times executive editor
Series tells of dementia and families' hope, courage, compassion
Marsha King's editor used those words to describe her series of stories on Alzheimer's disease and other forms of dementia, beginning in today's Seattle Times. "These stories are tremendous," concluded Jacqui Banaszynski, the editor who had championed the series from its inception.
Readers will choose their own words to applaud this work, but there can be little doubt that anyone reading the articles will be moved by them and by Tom Reese's photographs. I was in tears at the end of today's installment, "Losing Betsy: A journey through dementia."
My only question was whether people would actually read stories on a topic so painful and frightening. Turning away would be an understandable response.
In fact, Alex MacLeod, Times managing editor, admitted that was his first reaction to hearing about King's idea. "I didn't know if I wanted to read that story, and I wasn't sure I wanted to see it in the newspaper.
"Now that it's done, I'm really glad it's in the newspaper," he said. (And, a word he would add to the list is "honest.")
I asked King why someone should read the stories, given the tragedy at their core. Her answer was as touching as the stories themselves: "It's an opportunity to look inside the human spirit."
King came up with the idea for the articles two years ago, after reading some books written by people suffering dementia. Although her beat was covering aging issues, "I never dreamed that people with dementia could talk about it," she said.
Early attempts to find people who could and would talk about their experiences didn't pan out, but King's desire to tell the story didn't lessen. She wanted to find a way to express the human element of dementia: how it feels to the victim, how it affects the victim's family, friends and co-workers.
Alzheimer's disease and other forms of dementia are some of the most perplexing and frightening ailments of our times, because they attack the very core of our selves: our minds and memories. They also can be hard to spot in their early stages, and so far they're impossible to cure at any stage.
King knew that there has been a growing movement among people with progressive dementia and their families to go public with their stories, to share what the experience is like. In part, their activism is due to progress in early detection. People now are finding out about their illness when they are minimally impaired and can still express what it's like for them and their families.
But most of these accounts have come from the elderly. "The compelling, tragic story that still needs to be told is about the unique hardships, challenges and even joys faced by younger sufferers and their loved ones," King said.
"With help from the local Alzheimer's Association, we found three younger families living with dementia who were willing to take us on their journey."
That was last fall, and King has been working full time on the story since March.
"We chose to focus primarily on Betsy and Jeff Meyer and their two children. When we first met them, they had only just started to face up to her disease, so we were able to learn right along with them. And it was a compelling opportunity to hear directly from Betsy, who is in the early stage and can still describe what it's like to have dementia at age 48."
The Meyers have agreed to let us share their experience start to finish, wherever it leads, and we anticipate writing more stories about their challenge.
The other two families, who will be profiled in tomorrow's Times, are farther along and give a clear picture of the struggles and heartache that lie ahead for the Meyers.
"The real power in these stories springs from the courage of these three ordinary families," King said. "They are trusting us with the intimate details of their lives simply to make a difference. In doing that, they're teaching us all many lessons — about how to practice patience, about how to find hope and even humor in tragedy, about hanging on to dignity in spite of a most dehumanizing disease."
For all the families, it was a hard decision to share the intimate details of their lives in such a public forum. But their desire to help educate the public outweighed fears and discomfort.
"People need to be educated that there's still a person in there," said Debbie Halvorson, whose husband John, 55, was diagnosed with likely Alzheimer's more than two years ago. "I just want people to feel more comfortable with what this is."
"This could happen to anybody," said Gene Muren, whose wife Debra started showing signs of progressive dementia at age 46. "We need to hold our heads high and go through life as best we can, because there's nothing to be embarrassed about."
King's own experience while being with the families and writing their stories reflects the benefits they hoped to achieve. "I don't feel awkward and afraid any more," she said.
"I just feel overwhelmed by the gift that they have given us."
If you have a comment on news coverage, write to Michael R. Fancher, P.O. Box 70, Seattle, WA 98111, call 206-464-3310 or send e-mail to email@example.com. More columns at www.seattletimes.com/columnists.