Alan Romatowski found himself lost this year -- in the home he has lived in for 21 years.
Seemingly overnight, the early-onset Alzheimer's patient -- one who is still aware of and able to joke with everyone around him -- had trouble remembering how to get around the modern, multilevel Middlesex, Butler County, home he shares with wife Josie.
His memory of past experiences like flying commercial airliners across the country remains sharp, but he can be flummoxed trying to decide which route leads from his kitchen counter to a door to exit the home.
Five years after he was diagnosed with dementia at the startlingly young age of 57, those who know Alan see him starting to drop off a cliff he had sidestepped till now. He takes things out of drawers and closets and can't remember why. He has lost the ability to operate a cell phone or CD player. He no longer absorbs what he reads.
In a one-on-one conversation, he can still play the same jovial, astute role he has managed all his life, but if a visitor in his living room asks where the bathroom is (there are two on the first floor), this amiable, white-haired man's blue eyes look around quizzically. He rubs his forehead while glancing down. Then he looks up, with a slight grimace, head shake and pause before calling for a lifeline in the next room:
" ... Josie?"
There is no normal path of progression in Alzheimer's, the most common form of dementia. The 5.4 million Americans estimated to have the disease are deteriorating -- unavoidably, as there is no known cure -- in unique ways. Those afflicted may look and feel fine, but with cloudy memory and unreliable judgment. Some become agitated. Some wander. In the worst case, they forget not only the identities of those closest to them, but their own.
Alan Romatowski's condition was unusual from the outset in that he was one of only about 200,000 cases at a given time of early-onset Alzheimer's, which is defined by diagnosis before age 65. His affliction was identified earlier than is typical in part because of the nature of his work; as a US Airways pilot, he had to undergo sophisticated tests of his analytical abilities. His unexpected failure on those after an unblemished career led to medical evaluations at the University of Pittsburgh Alzheimer Disease Research Center that confirmed his condition and cost him his commercial pilot's license, long before his planned retirement.
Though he and his wife, who have three adult children, were devastated by the diagnosis, he became a regional spokesman for the disease through the Alzheimer's Association and served on its national advisory panel made up of patients. While he no longer fills those roles, the Romatowskis have committed to sharing their journey through Alzheimer's publicly via the Post-Gazette each year since 2008 in hopes of enlightening others.
Sitting at the counter of a Route 8 gift shop she owns but had to close for months in order to take care of Alan at home, Josie Romatowski couldn't conceal the frustration of the past year. She has been drained in every way after stoically enduring the earlier years of the disease. She's spent days at home feeling paralyzed, unable to move herself to accomplish the tasks she woke up intending to do, simply because of the mental, emotional and physical toll.
"It is the realization that he is completely and totally dependent on me, and I am completely and totally responsible for everything," she says, feeling lighter while discussing it in a place where she is surrounded by candles, cards and Christmas ornaments instead of by the heavy presence of a spouse helplessly hovering. Alan sometimes follows her from room to room in hopes of being given a task to do to retain his self-esteem -- one he is more likely than not to butcher, like past repair jobs that left things worse than when he started.
When 2012 started, Alan could still largely take care of his daily needs, even though he had lost his driver's license and needed to be driven to a volunteer job with Meals on Wheels. Now Josie has to help him dress and hand him his toiletry items one by one in the bathroom as he prepares for the day, as the various steps of bathing and shaving can confuse him. She ties his shoelaces for him before they go out.
"It's like having a young child," she says.
Alan, she says, takes all the help as though it's normal. If he recalls being independent, he doesn't bring it up. Nor does she, in his presence. It's now her normal, as much as his -- she's realizing more every day, like all Alzheimer's caregivers, that the person diagnosed with the disease isn't necessarily its biggest victim.
"I'm losing my freedom, not necessarily of being able to do anything, but of just having small increments of time to myself," Josie sighs. "I know people want to hear you're doing well and taking it one day at a time, but there are times I can't take it one moment at a time."
While Alan feels good about himself and how he is coping with the disease many days, his frustration poured out on Sept. 6.
He was at the University of Pittsburgh's ADRC, a federally funded regional center for Alzheimer's treatment and research where he has made regular visits since 2007. In addition to receiving annual checkups, he was seen more frequently as a participant for several years in a clinical trial of a treatment drug, Bapineuzumab, which was announced as a failure in August.
The first Thursday in September, he was tested at the center on his mental functions when he had assumed he was only coming in for discussion of the Bapineuzumab trial. He had done the exam many times before; participants are asked to recite from memory, do drawings, count backward, put cubes together and handle other cognitive tasks.
Some Alzheimer's patients couldn't care less how they do on such mental tests. They've either lost any awareness of their meaning or perform them to oblige clinicians and caregivers who urge them on.
That's not Alan. He's aware that his performance affects how others perceive him. He's even prepped for the tests in the past, walking through with Josie ahead of time the types of questions he will be asked: What's the date? What's the season? What floor are we on in this building?
This time, more than ever -- and with no chance for prepping -- he was flustered. He became angry when he couldn't complete tasks. Beth Sarles, a neuropsychology program coordinator who had tested him many times before, offered him a chance to stop, but he declined. Alan chose to continue, only becoming angrier. His fist pounded the table -- wham! Ms. Sarles stopped the test, apologizing afterward to him and Josie for upsetting him.
When Alan rejoined Josie in a waiting room, pacing restlessly, he was still angry and visibly shaking. He'd often shown a temper at home long before the affliction of the disease -- he has taken medication to help control it since his Alzheimer's diagnosis -- but not so much in public.
"I was this close to punching her in the face," he muttered to Josie, though Ms. Sarles would say later that she never felt threatened.
Alan's biggest problem on testing has always been assembling red and white blocks in shapes and patterns he is given. His visual-spatial processing has declined more rapidly than his memory and verbal functions, though he does stutter and forget words increasingly every year. Brain scans at the ADRC have shown marked deterioration of his occipital lobe, the region responsible for making sense of visual cues.
It is why he is now lost so often, even in the most familiar of places, and frequently needs prompting with what to do with a sink, eating utensils, a bar of soap and other everyday items.
"The eyes are working, but they can't translate the picture," explained Oscar Lopez, the neurologist who diagnosed Alan and is co-director of the ADRC.
He said Alan's intelligence gave him a cognitive reserve that helped him stave off serious impairments from the disease for several years, but the effects are unavoidably catching up. For years he has taken drugs prescribed for the disease, Razadyne and Namenda, which potentially slow the symptoms, though they work differently in everyone, and any benefits aren't typically permanent.
Alan's biggest hope, in terms of its value to future patients as well as himself, was pinned on the Bapineuzumab infusions he'd been receiving. During the huge clinical trial by the Pfizer and Johnson & Johnson firms, he wasn't sure if he was being given the placebo or the drug itself, which was supposed to eradicate plaque in the brain that has been considered a likely cause of Alzheimer's. Once the trial ended, all participants received actual infusions, but then results came out showing no clear benefits.
In his kitchen one recent morning, he looked at the Razadyne and Namenda pills in his hand. He paused, uncertain of what to do with them, until Josie mentioned the glass of water in front of him. But showing how he's also retained memory and insight, he calmly said with no prompting about Bapineuzumab: "I'm really disappointed at how that study turned out."
The Romatowskis' saving grace as the Alzheimer's symptoms accelerated has been adult day care, where Alan wears a badge identifying him as a "volunteer."
Alan is not a volunteer. He was a volunteer early this year when he began attending Adult Day Services of Concordia Health and Human Care, part of a campus just outside Saxonburg, about a 20-minute drive from home. Now, he's given the badge as a ruse.
He started out there by helping the staff supervise Mike Benedict, an acquaintance of his and a day care participant with more severe dementia symptoms, making him unable to converse and invariably interested in eating others' food and wandering out of the room and down a hall.
The staff gradually lost confidence in Alan's abilities. Josie was told she'd need to pay for him as other clients do. She pays a discounted rate, through the Butler County Area Agency on Aging, for him to attend four days a week. It's enabled her to reopen her store, Peppina, which was closed in spring and summer because she felt she could no longer leave him home alone.
Many of the other day care clients also have varying levels of dementia. Alan is the only one wearing a badge that enables him to think he's there solely to help Mike and others, while joining in the same games, exercise, discussion and meals as all the rest.
"I can still do something for people," he says there one morning after escorting restless Mike Benedict down the hall, at the direction of day care manager Melissa Weichey.
"We ask him to do little things," she says, and it does no harm to let him think nothing has changed from when he started.
It's a common technique recommended with Alzheimer's patients -- avoiding unnecessary truths that would only upset them. If a 75-year-old person insists that a long-deceased parent is still alive, it's best just to encourage discussion of mom or dad rather than try to convince the patient they're no longer around.
"Use strategies to help them feel better," suggests Lori Macedonia, the ADRC's clinical coordinator who knows the Romatowskis' situation. "Sometimes stretching the truth or telling a white lie is kinder for the patient."
The Alzheimer's Association reports that some 15 million people are unpaid caregivers for those with the disease, and their own health risks go up from the stress. More than 60 percent of those surveyed rate their stress levels as high or very high. Count Josie Romatowski among them.
Her way of dealing with it, primarily, is to unburden herself to a group of other spouses, mostly women, who meet in a formal support group on a monthly basis and also gather for meals a few times a month. They're the only ones who understand each other and can even laugh at ridiculous things their husbands do -- or horrible things they imagine happening to their husbands.
Eating pasta and salads at the Olive Garden one June day, the others chuckle knowingly when Josie tells them Alan's idea for restoring some of his transportation freedom.
"He told me he wants to get a horse," she relates matter-of-factly, "because you don't need a license to ride a horse, and a horse knows where to go."
Everyone has a story of implausible reasoning like that around the table, or worse. There are vivid descriptions of incontinence, which Josie hasn't had to deal with. There are tales of public embarrassment in supermarkets, in restaurants, in gymnasiums, in houses of worship. There are stated wishes for a sleeping spouse to simply never wake up -- for everything to just be over.
Josie is a nurturer for others in her group, always asking about how they're doing, in the same way she looks after Alan. Their marriage had strains even in the pre-Alzheimer's days, but she says she couldn't live with herself if she left him now, even if staying is more about guilt than love. And she feels sorry for the man she's lived with for 25 years. When she talks with frustration about his inability to put a plug in a wall socket, she remembers instantly to mourn, "This is a man who used to fly airplanes!"
So Josie tries to avoid resentment on days when Alan's in a good mood, blissfully unaware of burdens he's placed on her. She tries to avoid thinking about placing him in a long-term care facility, which would require a huge financial commitment.
But after the past year, she also avoids focusing on what the couple's year ahead will be like. "I don't know," she says softly when asked about it. "I don't want to think about it."
Gary Rotstein: firstname.lastname@example.org or 412-263-1255. First Published November 25, 2012 5:00 AM