When diagnosed with Alzheimer's disease at age 56, airline pilot Alan Romatowski was determined to remain productive, even if people could no longer depend on him to shepherd them across the country in Boeing 737s.
The Middlesex, Butler County, resident threw himself into volunteer work like he'd never done before. He made speaking appearances for the Alzheimer's Association in front of hundreds of people. He took whatever part-time work he could to help replace his US Airways income for his wife and children.
But as Alan passes through his fifth holiday season since being grounded by the devastating disease in the prime of his career, the productive work and most of the volunteering is gone. Stripped of his driver's license, he's alone much of the time in a home surrounded by woods, watching CNN for hours while playing with cats.
A Life Hijacked: Pt. V
Alan Romatowski, with the help of his wife, Josie, continues his battle against early onset Alzheimer's. This is the latest update on his condition. (Video by Steve Mellon; 11/27/2011)
The good news is his memory is intact and he can often carry on a conversation well. Alzheimer's has eroded the 60-year-old's functioning more slowly than is the case for many patients -- he knows who everyone is, recalls what happened yesterday, is aware of his condition.
But that lucidity increasingly competes with fog. Alan strives to be the jovial joke-teller he's always been, but he stammers more than ever, forgetting obvious words. Simple tasks such as washing dishes and bagging groceries can confuse him. He becomes restless, and wife Josie finds it harder all the time to keep him contentedly occupied.
But if in some ways 2011 has been the toughest year for the Romatowskis since Alzheimer's settled into their spacious, suburban household, it has also brought a more mature understanding of how to live with the affliction.
After spending a year angrily denying that dementia symptoms had robbed him of his ability to drive his pickup truck safely or ride his beloved motorcycle, Alan now acknowledges that giving up his keys -- an action forced by his doctors -- was probably best for everyone.
Most all family responsibilities, from earning income from her Route 8 gift shop to doing chores, have fallen to Josie, his wife of 23 years. That's in addition to the burden of serving as a caregiver.
Not long ago, that all felt like too much to her. The onetime flight attendant, who fell in the 1980s for the Alan she knew as a smooth, confident pilot, would sometimes leave the house just so she could cry alone in her car in frustration. But after so many days of struggling through, then seeing she could make it to day's end and do it again and still keep her family, business and sanity intact, she realized she didn't have to feel defeated.
"I guess the big word is acceptance," she said in describing a recent awakening to how to live with a spouse's Alzheimer's. "I find I can get through the day without becoming overly emotional or overly frustrated. ... You find pleasures where you can."
Alan is not the normal Alzheimer's patient. An estimated 5.4 million Americans have the disease, but only a few hundred thousand are under age 65 and have his "younger-onset" version. The most prominent of those, highly successful University of Tennessee women's basketball coach Pat Summitt, received her diagnosis this year and is a year younger than Alan.
From the time his illness was confirmed at the University of Pittsburgh's Alzheimer Disease Research Center in September 2007, Alan became committed to raising Alzheimer's awareness. For the Alzheimer's Association, he served on a national advisory committee made up of people in early stages of the disease.
He also sought to enlighten the public about the disease by sharing his progress and struggle with it through the Pittsburgh Post-Gazette since 2008. It's become a less comfortable story for him.
Sitting next to his wife on a sofa in Glade Run United Presbyterian Church, the hub of a Meals on Wheels program in which he still volunteers once a week, Alan's arms were folded or fingertips tapping together as he described more recent experiences.
"I can still hold a conversation, but I get these senior moments more and more where the words don't come out," he said quietly while looking down.
His words flowed fine at that moment, but he also confessed it's become hard to read and retain anything. A task like raking leaves around their 5-acre property overwhelms him. He sees himself as a burden to his wife and stepdaughter, who lives with them, because he relies on them to drive him everywhere.
"I say I'm resigned to it, but that doesn't mean it's easy," he says, referring to his loss of driving, but it's just as applicable to the rest of what he's given up.
Earlier this year, he was both volunteering and doing part-time paid kitchen work at St. John Specialty Care Center, a nursing home in Mars. Those positions have ended, as has part-time work he enjoyed for nearly two years interacting with customers by providing food samples at the Costco in Cranberry.
When Alan started working at Costco, using his gift of gab and easy smile, it was hard for others to notice he had dementia, said his supervisor, Maria Jarvis of Club Demonstration Services. Once co-workers were aware of the disease, they helped look out for him. In recent months, they could no longer cover for his fogginess.
"One day he would seem 'with it,' like he was focused, and then another he would come in and it almost seemed like he was lost, like he didn't know where he was," Ms. Jarvis explained. She told Josie recently that giving Alan hours to work was no longer feasible, although Ms. Jarvis didn't want to tell him that directly.
While he can't drive for Meals on Wheels, Josie drops him off at the church every Wednesday morning to handle food deliveries. He rides alongside a driver in his 90s. Even there, he's not as sharp as he used to be, occasionally needing reminders from the older man of what to do with the meals, but the staff admire him and aim to help him remain a contributor as long as possible.
The Alzheimer's Association estimates there are some 15 million unpaid caregivers like Josie Romatowski for people with dementia. It is said that the disease is harder on them than on those it afflicts, especially as patients lose track of what's going on.
Among other difficulties in the past year, Josie has watched her husband get lost in supermarkets; curse at the microwave when it didn't do what he wanted; and shred documents she needed when Alan mixed them up with worthless papers she gave him to destroy to keep him busy. He's tried to repair things around the house, as he once did, only to make them worse. When confused or frustrated, he has lashed out, swearing and blaming others.
To relieve the frustration, Josie sometimes swaps stories about such incidents with other members of a local Alzheimer's Association support group, all of them wives who can relate. She even feels fortunate after such discussions, when hearing from others that their husbands can no longer carry on a conversation.
For four-plus years, she's watched how hard her husband has battled the disease, feeling admiration at his persistence while at the same time becoming more exasperated by Alan's behavior -- as though she had an adult-size 4-year-old child.
"He's kind of at an odd point," she said several months ago. "He really can't do too much, but he's not at the point yet where that doesn't bother him."
As a commercial airline pilot, Alan had to function mentally at such a high level for nearly three decades that his doctors believe it's given him more protection from the disease than is often the case. Alzheimer's affects everyone differently, in both pace and symptoms, and he's staved off the worst symptoms better than many.
"It's been a remarkably slow progression up to now, but this year is a little bit of a turning point for him," said Lori Macedonia, clinical coordinator of Pitt's Alzheimer Disease Research Center, where Alan receives an annual evaluation.
While Josie is increasingly worried about maintaining her gift store as Alan declines, Ms. Macedonia said a caregiver's ability to have her own outlet away from the disease has importance of its own. That sense of occasional freedom and use of a support group with whom to share struggles can be the biggest assets for someone like Josie.
"It's nice to know we're all in it together," Josie agrees.
When Alan was called upon as more of a public spokesman for Alzheimer's, the disease would more often make its way into conversations at home. It's most likely to come up now when the Romatowskis drive to the ADRC in Oakland, where in addition to evaluations, Alan receives a transfusion every 13 weeks of an experimental drug.
He reclines while Bapineuzumab is pumped into his system as part of an international study of its effectiveness. Preliminary results on use of the drug showed it could reduce the amyloid plaque in the brain that has been linked to Alzheimer's, though there's yet to be evidence that doing so restores individuals' mental abilities.
Alan had an earlier role in the study in which he received either the drug or a placebo, and he still doesn't know which. He and Josie are glad to know he's getting the real thing now, though they have no illusion of miracles.
"It's not something that's going to be an overnight fix," he says, sounding cautious like an academic researcher. "I'm not looking around the corner to see if there's going to be a major change in my cognition."
He also takes a couple of daily pills, Razadyne and Namenda, that can slow symptoms, though there's no guarantee.
Josie is agnostic about all these efforts, though there's nothing to do but try.
"People ask me 'Do the medicines work?' and I really don't know how to respond," she explains. "I don't know if he wasn't taking the medicine, if it would be worse. I don't know if the infusion is staving off progression. ... I do know he's declining."
But unlike before, she believes it's a decline she can live with. The couple still enjoy going out for meals. They were able to spend a summer week relaxing alone at their Edinboro Lake cottage, forgetting troubles. Old friends of Alan's occasionally visit him at home, though some have stopped, apparently because they're uncomfortable around him.
The disease has also robbed Alan of the relationship he wishes he had with his son, Yuri, a college freshman. In addition, he regrets that there's little he can do now to assist the family's income.
Josie worries about finances too, but also feels a sense of relief from that once all-consuming weight of Alzheimer's. She remembers feeling swallowed "in a black hole" by the fear of the future. But it is often preached that the key to battling the disease is dealing with it day to day.
She's succeeded in that, finally, by the repetition of assisting her husband and doing what she needs for herself without drowning.
"Now the days have piled up behind us, while two years ago there were days where I didn't think I could get through that day," she says. "Before, you didn't know if there was life after Alzheimer's, but there is ... for both of us."neigh_north - health
Gary Rotstein: firstname.lastname@example.org or 412-263-1255. First Published November 27, 2011 5:00 AM