This is the sixth story in an annual series about Alan Romatowski's life with early-onset Alzheimer's disease. Since 2008, staff writer Gary Rotstein and photographer Steve Mellon have presented a chronicle of his journey.
Alan Romatowski, at 62 the second-youngest resident of his dementia care facility in Ross, is drinking juice at lunch from a sippy cup.
Alzheimer's tightens its grip on former pilot
Six years after being diagnosed with early-onset Alzheimer's, Alan Romatowski is confined to a wheelchair and requires constant care. (Video by Steve Mellon; 12/1/2013)
The former airline pilot, a few years ago a member of a national advisory panel of people with Alzheimer's disease, clutches for comfort at times the same type of colorful cloth toy with spinners on it that you'd find in a crib.
He can't walk on his own or form a coherent sentence of more than a few words. Beneath his clothes, he wears an adult diaper. His wife used a baby monitor to track his stirrings at home earlier this year.
This retreat to the traits of infancy represents a devastating decline from disease in the past year -- accelerated by a blow to the head in September -- for a proud, once-talkative man who focused after his 2007 diagnosis on convincing family, friends and strangers alike that a person with Alzheimer's could remain productive. For several years, it would have been hard for someone meeting him for the first time to recognize his condition.
But Alan has fallen off a cliff, one that exists on a unique timeline for every Alzheimer's patient. For a disease with no cure, the slide is unavoidable. Worse, there is nothing that can prepare a caregiver for it, says Alan's wife -- all of the books and lectures and advice in the world add up to so very little when someone recognizes neither who you are or what to do for themselves.
"This disease just takes so much," Josie Romatowski said on the phone last week, "and the only word I can use to describe it is insidious, because it's just so ugly and dark with horrible things -- and in the end, it just drags out."
A public face
Alan volunteered five years ago to become a spokesman for individuals with early-onset Alzheimer's disease, and Josie -- a former flight attendant who met her husband when they shared Pacific Southwest Airlines planes in the late 1970s -- agreed to tell the caregiver's tale. They made public speaking appearances through the Alzheimer's Association in addition to being profiled annually in the Post-Gazette.
Alan was in his prime for US Airways when he began failing standard piloting tests at age 56. The wall display outside room 44 in Arden Courts of North Hills testifies to some rare credentials of the devilishly handsome, mustached man pictured there in his uniform. Included is a May 28, 1980, letter from FBI director William Webster commending Alan for his actions as a cockpit hostage who disarmed an airplane hijacker and safely ended a standoff on the tarmac in Stockton, Calif.
Twenty-seven years after that heroism, a span in which he logged numerous motorcycle rides, skydiving jumps and scuba-diving trips in addition to flying commercial airliners safely across the country, Alan found out that he was a rarity in an unsought way: He was among an estimated 200,000 Americans afflicted with Alzheimer's disease before age 65.
At least 5 million people have the disease or other forms of incurable dementia in old age. Confusion, memory loss and other mental difficulties plague one in either case, but for those younger the diagnosis is frequently worse: As with Alan, many are still the family breadwinners; they may still have children depending on them; they could have numerous ambitions yet to fulfill in and before retirement.
Though grounded from flying, Alan spent several years as a part-time retail worker and service volunteer before the disease began overwhelming his ability to function. By last year, Josie could no longer leave him alone at home. By this year, he couldn't figure out what to do with clothing, food or toiletries, unless given specific instructions -- which constantly required her presence nearby.
Left to himself, Alan would do things like put his pants on inside out, or something worse. Josie was always cleaning up his messes. If she corrected him, the resentful Alan occasionally lashed out, even shoving her against a wall, which led to a trip to the psychiatrist for new medication. As a worn-down caregiver, Josie's lone salvation was the four days a week her husband attended adult day care near Saxonburg.
As one baffling incident after another piled up, Josie could chuckle in dismay at some, like when Alan would watch a "M*A*S*H" rerun on TV and confuse her cooking with what Cpl. Klinger was serving up in the mess hall. Or when he'd see some flood a thousand miles away on a newscast and express concern for preparing a boat.
Other episodes were maddening, like when she spent a half-hour trying to get him into her car at the end of the day outside the gift shop she runs along Route 8.
"I opened the car door for Alan to get in, and he didn't know how!" she wrote in an email to friends. "I tried to get him to step in with his left leg and he didn't know what his leg was. I tried to back him in to sit on the seat and he would sit on the floor. ... I was really beginning to panic. Thinking about the ramifications if this continues is frightening!"
And then things got worse.
Alan developed a pronounced tendency to lean forward in his gait during the year. Along with it came a narrowing of his visual field. He could focus on little of anything except what was right in front of him.
Oscar Lopez, the neurologist who diagnosed Alan in 2007 and is co-director of the University of Pittsburgh's Alzheimer Disease Research Center, said during Alan's annual evaluation on July 30 that he suffered from Balint's Syndrome.
It's a little-known impairment that many Alzheimer's patients escape. But for Alan, it meant his visual perception of the world was distorted just as much as his cognitive functioning. His disease had severely damaged the occipital-parietal region of his brain, where visual meanings are processed.
By the time of this midyear checkup, Alan had a hard time understanding how and where to sit down in a chair when directed to do so. He could still shuffle on his own two feet, recognize who he was talking to, converse in simple sentences, attempt an occasional joke, but everything was increasingly stuttered and scrambled.
Less than two months later, on Sept. 16, Alan was coming out of the day care center on the Concordia Health and Human Care campus near Saxonburg. He was to get a ride home from a family friend, Kathy Benedict, whose husband also attends the day care.
For no reason, Alan began rushing, with his upper body again leaning forward. As he gained momentum, ignoring Ms. Benedict's shouts, he ran directly into a sign. His body flew in a thud to the ground, his head striking the pavement. Blood gushed. Paramedics rushed him to Butler Memorial Hospital.
He has not been the same since, whether at the hospital, at Arden Courts or the weeks spent between the two in a rehabilitation program of St. Barnabas Health System. He can't walk. He rarely talks. He can no longer feed himself. Sometimes he recognizes Josie, sometimes he doesn't.
Hospital doctors told Josie it was simply the effects of his Alzheimer's. "I said no, he couldn't have been one way at 9 a.m. and at 5 p.m. be completely different -- that's not normal progression of the disease."
She said she never got a real diagnosis of what had happened to Alan from the fall, and the experience has added to an impression she had increasingly gained that numerous medical professionals are ignorant about Alzheimer's. The emergency room doctor, Josie says, even admitted she knew more about the disease than he did.
Dr. Lopez has not seen Alan since his fall, but based on his discussions with Josie and the hospital's staff and an MRI scan, "it appears he suffered a mild concussion, but a mild concussion can have a devastating effect on someone with Alzheimer's disease."
Alan had lost most of the cognitive reserve that would enable other people to rebound from such an injury. "Now there's nothing there. What we saw on the last MRI is the [brain's] gray matter is almost gone."
Physically, he notes, people in Alan's condition can last for many years.
An overwhelming task
The course of Alzheimer's is different for every patient and family, but frequently, by the end the needs become so great that it is too difficult to care for the person at home. In some cases, wandering and other issues pose safety risks. For some, dealing with incontinence becomes too big a burden. Day-to-day issues can consume so much of the best-intentioned caregivers' time and health that it's just not practical any more.
For the Romatowskis, it become very simple: Josie could not move Alan around. He was 175 pounds of dead weight, unable to help himself get from a wheelchair to a car, bed or toilet.
Her hope had been to care for him at home to the end, and it wasn't out of some heart-consumed expression of love. Strains on their marriage before the Alzheimer's had hit had robbed it of much of the love and romance. But there are huge costs in placing someone in a long-term care facility, and Josie said she also felt out of loyalty -- or guilt -- she should be the one responsible for Alan's care instead of strangers.
His new decline gave no choice. But decisions had to be made quickly. Alan's health insurance policy covered his rehabilitation stay at St. Barnabas only to a point, and when he showed no improvement, it was a matter of days to find a new home for him. Josie's already-high stress level shot up as she began that search, with no idea how to pay for it.
Alan could qualify for nursing home care paid for by Medicaid, but only after spending down much of the family's assets. For assisted living or personal care homes, there is virtually no such government support.
At age 61, Josie has many years of retirement ahead for which to cover her own costs. Income from her gift shop dropped due to the amount of time she had to care for Alan. He received SSI payments for his disability but, like all other US Airways pilots, lost his pension in its bankruptcy. The family already refinanced their home to keep up with costs.
Josie began scouting facilities with no idea where the money to pay for them would come from. Many depressed her.
"They looked like what you see in the movies when you see a mental facility -- the old people walking down the halls with a dazed look in their eyes. Some of them looked horrible. I couldn't in good conscience put him there."
And then two things happened: One was visiting Arden Courts, a dementia-specific facility where she found a homelike, attractive setting, clean residents and a staff that seemed to easily, happily converse and interact with them.
Secondly, she found an important envelope while searching for a title to Alan's pickup truck in order to sell it. The envelope contained paperwork from a financial account of Alan's she never knew existed. By a miracle many months ago, she had rescued the envelope and other papers from a pile that Alan had decided, during his dementia, needed to be burned in a small bonfire in back of the house. She stuffed all the papers in bags, forgetting about them until looking for the title.
The found money, which she could take possession of with her power of attorney, amounts to about a year's worth of the $5,300 monthly cost for placement at Arden Courts.
"I thought it was a dream," Josie said of finding the financial paperwork. "From being the lowest I've ever been in my life, or close to it, not knowing what I was going to do, to getting this money and knowing I have a way of taking care of him that wasn't going to destroy me in the process."
Her brother and sister-in-law were visiting from California at the time she made the find and placed Alan. They told her afterward they were certain she was on the verge of a nervous breakdown until the money appeared.
Josie has no idea whether Alan had been hiding the money from her from the outset, considering their marital strains, or had always planned to share it and forgotten about it due to his disease.
Either way, he had it minutes away from the fire.
Researchers and advocates in the dementia care field advise anyone navigating a path like the Romatowskis both to get all the in-home support they can for the caregiver -- so they're not exhausted -- and at the same time to visit long-term care settings to make decisions about potential placement before any crisis exists.
Some of that is easier said than done, though numerous studies have shown caregivers -- especially those for loved ones with dementia -- are at increased risk of both mental and physical harm to their health from stress and exhaustion.
Lois Lutz, education and corporate specialist for the Greater Pennsylvania Chapter of the Alzheimer's Association, said, "If anyone offers help -- friends, family, church members -- just say yes, thank you, and really accept the support with the idea that you don't have to do it alone."
When people reach the point of considering long-term placement, she said, they are often stunned by monthly costs, which can be even more than Arden Courts' $5,300, depending on the facility. If they can afford that, Ms. Lutz said, people should visit for personal inspections and pay attention to such things as the amount of natural light, walkable space and homelike activities.
"Look at the residents generally, and whether they seem happy and engaged, or whether everybody's sleeping," she advised. "Do they all seem medicated? You get a good feel for it when you go into someplace."
At Arden Courts of North Hills, one of 60 dementia-specific facilities operated across the country by HCR ManorCare, administrator Joan Ealy said the 56 beds are generally 95 percent occupied. It's a personal care home instead of nursing home, meaning families -- not Medicaid -- must cover all of the care costs.
The single-level property has a discreet locking system to keep residents from exiting, though they have ample walking space in curved hallways. Though he's the second-youngest there, Alan is among the least able to care for himself. Ms. Ealy said it was clearly time for Josie to receive help.
"We all want to care for loved ones at home, but the time comes when you need other people to support you," Ms. Ealy said. "Josie deserves to be his wife again rather than caregiver, just as someone's child deserves to be their child again instead of caregiver."
Josie, who makes the 35-minute drive to see Alan several times a week, acknowledges her burdens are less now. She has more freedom, but her stress has not evaporated. Mostly, it's from the sadness hanging upon her as she sees what's become of this once-vital man she lived with for nearly a quarter-century, whether in loving him or tolerating him or tending to him.
He perked up at her presence one recent day, addressing her by name, recalling the dog they once had and loved, both of them smiling and tearing up at the same time at the memory. The next time she saw him, she saw no spark. This time, her tears had no smile accompanying them.
"I feel badly that his life has come to this, that his life is basically over," she says, conversing once more on the phone, then pausing to continue it through choked tears. "It's not only taken his memories and abilities to care for himself and his ability to see, it's taken his dignity. ...
"He's a shell, and the sad thing about this disease is you never really get the chance to say goodbye. When they're still good, you don't say goodbye because they're still able to understand what's going on. And then one day they don't understand anymore, and you don't get the chance to say goodbye. ...
"It's like seeing a loved one in an open casket."
Gary Rotstein: firstname.lastname@example.org or 412-263-1255.