Relationships : Living With Alzheimer’s : New information about the disease coming from research at UCI indicates that the years after diagnosis can be easier on the patient as well as family and friends.
The little conference room at the UC Irvine Alzheimer’s clinic is where they deliver the bad news.
“When we got the diagnosis, it really ripped my heart out,” re calls Charlene Folcarelli of Ana heim Hills. She had brought her 55-year-old husband John to the clinic to find out why he felt so “burned out.”
“I wanted anything else but Alzheimer’s. I think John couldn’t really absorb what the doctor was saying, but I could immediately.
“The next day we were in our office--we worked together--and he looked at me and said, ‘The doctor said I have Alzheimer’s. That’s where you forget everything.’
“I said, ‘Yes,’ and he just started crying. From that moment on, I decided not to make it an issue.”
What Charlene Folcarelli did, and how John Folcarelli reacted, amazed doctors and scientists at the UCI Alzheimer’s Research Center. Resisting the despair and collapse that so often grips Alzheimer’s patients and their families, Charlene Folcarelli decided to wrest as many good years as she could from her husband’s affliction. She went looking for what he could do, not what he couldn’t.
What she and doctors discovered over the next eight years was that Alzheimer’s patients, progressively robbed of their memory of facts, very often retain their memory of how to do things. In the early and intermediate stages, often they still can garden, cook, shop, drive, play golf or play the piano and enjoy doing it.
What’s more, they can learn new activities. A man who cannot remember his children’s names may be able to learn how to paint or how to play bridge.
“This is absolutely astonishing,” says Carl W. Cotman, a psychobiologist who directs UCI’s brain aging and Alzheimer’s research unit.
“We still don’t understand what it is that allows them to do that. In the later stages of Alzheimer’s, we can’t promise anything. But we have had cases where clinic staff went to Autumn Years (a board and care home) and taught the people a beanbag-tossing game. These were severe cases, yet they could still learn this.”
One clinic patient, “very demented,” according to clinic director Joana Chrysler, continued to work as a pianist at a Newport Beach nightclub.
A group of the clinic patients banded together and formed what doctors called “the men’s club,” going on trips like any other group of old chums, Chrysler said. “You almost had to see it,” Chrysler says. “It was an uplifting group, because they were very outward; they felt so good about it. It would have been hard for someone to notice that these were not just a group of men out for a good time.”
Says Charlene Folcarelli, “People have to get the word that there’s a lot of longevity to this disease. It doesn’t affect your health. You stay healthy a long time. If you throw in the towel too quickly, you may miss a lot of good years together.”
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Eight years after his diagnosis, John Folcarelli is living in an Alzheimer’s home in Costa Mesa. But for five of those years, he led a happy and satisfying life at home, his wife says. “I set out not to change our lifestyle,” she says. She resolved to change their normal routine only after it was plain her husband could no longer cope with it, she says.
With his wife handling his telephone calls and correspondence, John Folcarelli continued to work at the credit agency the two owned in Orange. “We continued to take vacations, go to dinner, go out with friends.
“People think that all of a sudden these people can’t remember. It’s not like that. One day he wouldn’t remember how to turn the computer on, but the next day he would. There were two doors to the office, and sometimes he’d get confused over which one he’d gone out. I knew things were changing, but he was never aware of the scope of it,” she says.
After six months of worsening memory, she suggested that “we take a break from everything. That sounded acceptable to him.” Such tact is vital, she says.
“It’s what I put the emphasis on. John never felt he was useless. The key thing was to involve John in everything. They keep their self-esteem and dignity when you concentrate on the things they can do and you don’t criticize what they can’t do. You say thank you; they do relate to that. They relate to the tone of your voice. Maybe they can’t comprehend the words, but they comprehend the tone of the voice.”
She hired a companion to stay with her husband while she was at work, telling her husband that the man was there to help with household chores. They went everywhere together, sticking to familiar places--the golf course, supermarket, restaurants--where they were known. “People have a good heart and respond well when they know the situation,” she says.
The trouble, Cotman says, is that research into Alzheimer’s most basic workings is only a few years old and ordinary people “don’t know how to think about it yet. They don’t know what to do about it. Families are distressed because it’s irreversible.”
But, he says, “it’s not like (the patient is) losing everything, but people just write you off. Because you can’t remember the person’s name you just talked to, it starts to become an assumption that you can’t do anything. All of a sudden you don’t exist to anyone but your close circle. That has to be the most intimidating thing in the world and really humiliating.”
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In reality, he says, anyone visiting the clinic’s annual holiday party would have trouble picking out from the crowd the patients with mild or moderate Alzheimer’s cases.
“I mean, it’s seriously difficult. You can tell if you go away and come back because some of the conversation will repeat. But in the normal course of a three- or four-minute conversation, you basically cannot tell the difference.”
Yet, he says, researchers have sent questionnaires to Alzheimer’s families asking what the patient still can do. Usually they come back blank, he says, “yet we know many still have good motor skills. We’re not convinced that the care-givers, the families, are really looking.”
He said one patient, a former engineer, adored puzzles and could sit for hours enjoying them if someone could get the puzzle started. “It just made him feel good. That’s good for him, probably good for the brain, too, and it’s good for the care-giver, because he’s not getting into other things.”
People who used to work in a wood shop or a kitchen often still can do it, “even though they have trouble sequencing--doing A, then B, then C. You just write out the sequence for them.”
Chrysler says her clinic, though it’s not designed to train care-givers, winds up doing that “because they have so few places to turn.
“We tell them to keep the patient as independent as possible for as long as possible. Our goal is to keep them at home as long as possible, but it depends on the care-giver. Some people throw up their hands as soon as they get the diagnosis and want to put them in a home.”
The most successful care-givers, she says, are the ones who experiment and adapt. “With Alzheimer’s patients, there are few guidelines to what you can expect,” she says.
“One (wife) told me this is like being a widow backward, and she was perfectly right. Her husband was still alive, but she was doing the things that people do when husbands die--going through their clothes, going through finances. Their lives are just taken and torn apart, and so to be successful at the job--it can be a 20-year job--you have to be very adaptable.”
Three years ago, the disease finally advanced to the point that John Folcarelli could no longer drive. It was the turning point, his wife said. His resentment became hostility, and then every frustration became hostility aimed at her. “He finally got to the point that he didn’t like me,” she says.
After nearly a year, she placed him in a board-and-care home.
“I feel I got five more quality years with my husband,” Charlene Folcarelli says. “If I would have reacted to what they said eight years ago, I probably would have shut myself in the house, never gone out with John again and been a caretaker the rest of my life.”
