'A Life Hijacked:' Long-term project documents man's saga with Alzheimer's Date: 01/30/13
By Gary Rotstein
As the Pittsburgh Post-Gazette’s age beat reporter, I received an email from the Alzheimer’s Association in July 2008 about a local man with the disease who had just been named to the association’s national Early Stage Advisory Group.
I had some familiarity with Alzheimer’s, having written a series eight years earlier about work being done in Pittsburgh – a prominent research center – and the travails that families go through as caregivers.
But here was something different – a local individual diagnosed with the disease at the young age of 57, who was still alert and verbal enough to describe its impact. To that point, there’d been prominent spokespersons, such as Maureen Reagan, for caregivers experiencing the hardships and horrors of a loved one’s incurable dementia, but it was rare to find a patient capable and interested in speaking on behalf of the millions too afflicted to speak for themselves.
While a local resident’s appointment to a national panel was certainly worth at least a brief in the paper – that’s frequently all they get – I suggested to my editor, Lillian Thomas, that there might be a more meaningful story here.
Maybe Alan Romatowski would be willing to share his entire pain-filled Alzheimer’s saga in hopes of enlightening others, as well as showing how someone diagnosed with the disease could make himself useful in its early stages.
Maybe the newspaper would be willing to invest time and space in a long-running chronicle of his experiences, his decline, the impact on his family and others, to show what so many American families increasingly experience among the 5 million-plus dementia cases.
Lillian didn’t hesitate to say, “Go for it.” She discussed the project with our managing editor, who said the newspaper would support the effort, which meant a multi-year time commitment of a reporter and photographer/videographer and space commitment in the paper each year.
I called Alan, whose home phone number was listed, without knowing what level of conversation we’d be able to have. The conversation turned out to be normal as could be.
He was happy to give a reporter a quick overview of his situation – a commercial airline pilot subjected to frequent testing in simulators who inexplicably failed the same tests he’d sailed through before, leading to a tortuous series of medical evaluations that resulted in diagnosis as one of several hundred thousand Americans with early-onset Alzheimer’s, the term used for those afflicted before age 65.
Would he be willing to talk in more detail on a home visit, with a photographer/videographer along? Sure.
Letting us in
Colleague Steve Mellon joined me in a lengthy visit with Alan and his wife Josie to get their full story. After they conveyed a welcome candor over the course of several hours, I made the complete pitch: Would they be willing to share their ordeal for the newspaper and the public for the duration of the disease so that others might learn from them?
Alan was enthusiastic from the outset. He’d lost his career, income and future. He was grasping for ways to retain a purpose and his self-esteem. Josie was quieter about it, clearly wondering what they would be getting themselves into with so many questions in their own minds yet about the disease’s path. But she deferred to her husband’s ready acceptance.
Steve and I spent the late summer and autumn of 2008 visiting Alan and/or Josie every few weeks. We observed him handling deliveries for Meals on Wheels with a bounce in his step. We watched him fumble through a public speech as part of a fundraising walk. We followed him as he rode his motorcycle and went to the bar where he hung out. I joined him and Josie at a support group they attended. And I talked to his children, friends, neighbors and former co-workers about what they’d seen in him.
This resulted in a lengthy two-story print/photo/video package on Thanksgiving weekend of 2008, which has been updated every Thanksgiving weekend since. The series label is “A Life Hijacked” (a double meaning, as the very resourceful Alan had once disarmed a hijacker when they were alone on the plane during a standoff).
After starting with a “poster child for dementia” type story showing how Alan was upfront about the disease, we have progressed in subsequent years to stories about his decline in decision-making abilities and the loss of his driver’s license; his participation in a major drug treatment trial that subsequently failed; the struggle for Alan and Josie to find acceptance of his limitations; and now this year’s story focused on his child-like dependence on Josie for a variety of tasks, though he still has a good memory and conversational abilities.
Behind the walls
This year, like others, numerous other families going through similar experiences have praised the willingness of both the Romatowskis and the newspaper to focus on the hardships of a disease usually hidden behind each family’s own walls.
As a couple, the Romatowskis have been unflinching in baring their souls and difficulties. Steve has worked with me throughout on the visual side of the story, and our goal has been to be sensitive as well as honest in showing Alan’s decline and its effect upon his primary caregiver.
Does that sensitivity mean that I know more about the couple than what shows up in the newspaper? Yes. Separately, from both, I’ve heard of various strains in the marriage that preceded the Alzheimer’s. Revealing these intimate details in print or online might embarrass Josie, in particular, since Alan no longer has the self-awareness and public interaction that she does. As these are facts that have no direct tie to the disease we’re writing about, I don’t feel I’m being false to omit them. In the same manner, I have left out certain details of difficulties experienced by their college-age son that may or may not be tied to his father’s affliction – I would not want to make him even more of a victim of the disease through unsought exposure.
A couple of years ago, Josie said Alan was upset at the way he was portrayed when she read that year’s story to him (his own reading comprehension had steadily declined). The next year, she consciously omitted the portions describing his frailties as she read. Now she just hopes he forgets it’s going to be in the newspaper by the time it appears, so he doesn’t have to react to anything. His focus is almost always on the present, so that’s not a problem, apparently.
Alan still recalls who Steve and I are when we show up, and he enjoys bantering with us – he’s never hinted of unhappiness with us or said he wants to stop our coverage. He thinks he’s doing better than he is and still feels good about having a public role, even if he loses track of having that once we’re gone.
Josie, meanwhile, seems to find sharing her story both cathartic and useful in a way she hadn’t anticipated. She has seen for herself the public value of the project that her husband initially embraced.
“Not only am I honored to be part of your work,” she wrote in an email after seeing this year’s installment, “I am proud.”
With continued participation by her and Alan, the Post-Gazette is determined to keep telling the story annually until their difficult journey is over.
Gary Rotstein, 54, is a Pittsburgh Post-Gazette staff writer, editor and columnist who has worked at the newspaper since 1990. He has covered aging as his primary reporting beat for the past decade.