Best Friends Reminisce
Bangor day center encourages Alzheimer's patients' memory
Published: May 8, 2001
By Ruth-Ellen Cohen
Of the NEWS Staff
BANGOR DAILY NEWS
Section A, Page 1
Before he was diagnosed with Alzheimer's disease five years ago, Harold Arnold had been a crackerjack carpenter.
His hands could work magic, turning out sturdy pine picnic tables and love seats.
Displayed in the front yard of his Holden home, the hand-wrought furniture never failed to attract passers-by.
"We didn't even have to advertise," Arnold, 72, said proudly. "We'd put one outside and in 15 minutes it was gone."
But all that changed two years ago after he accidentally sliced off two fingers with a radial arm saw.
"The doctor said his brain probably didn't tell him the next step to take," said his wife Sarah, 68. "Now he can't use power tools anymore."
And so that part of Harold's life is gone forever.
But he can reminisce about those creative hours in his workshop whenever he visits My Friend's Place, a new adult day center in Bangor where people with Alzheimer's are encouraged to talk about the hobbies, habits and activities that once occupied their lives.
Located at the First United Methodist Church, the center is one of 30 pilot sites chosen by the Maine Alzheimer's Project to launch the Best Friends Approach, where each person is seen as a unique individual who still has something to contribute.
Caregivers often tend to concentrate on a person's medical history, forgetting that this is a human being who has a whole life story filled with wonderful things, said Cynthia Instasi of Hampden, who trained the 25 volunteers staffing the program.
But the Best Friends Approach focuses on the "person, not the disease, on those things that are still intact and that we can connect to," said Instasi, one of 18 master trainers across the state.
"It becomes our job as a best friend to find those things so we can understand who the person was before their illness and who they still are," she continued.
"When you think about your best friend, you know if she isn't having a good day, what she likes for food, the kind of music she enjoys, what ticks her off, what makes her cry or how happy she feels when certain things happen. Why not take the same knowledge and apply it to someone with Alzheimer's?" Instasi said.
A needed break
An estimated 30,000 Maine residents have Alzheimer's, including 10 percent of people older than 65 and 50 percent of those over 85.
When Sarah Arnold heard about My Friend's Place, she jumped at the idea.
"I thought it would be nice for us to get some time away from each other. Meanwhile, I'll know just where he is and what he's doing," she said recently, sitting at the lace-topped table in the couple's sunny kitchen.
A member of the Bangor Fire Department for 20 years and eight hours, as he likes to put it, Harold was assistant fire chief for eight years before retiring in 1977.
In one of his proudest moments, he saved a child who had hidden in the closet when fire broke out in her third-floor apartment on Hancock Street.
Now he spends much of his time leaning on the railing in front of the large kitchen window and watching the traffic go by, his ears primed for the familiar sound of a firetruck.
The family's Dalmatian, Lucky, stands on his hind legs next to Harold, his paws resting on the railing alongside his owner's once-busy hands.
The two make a comical picture, and Harold and Sarah burst into laughter even contemplating the idea.
"They look just alike!" Sarah said.
"Just paint me black and white!" Harold chimed in.
In some ways, her husband is the same easygoing jokester Sarah married 50 years ago.
"He's still got his sense of humor," she said. "I bet he'll always be like that."
Still, the disease has taken its toll. Harold once enjoyed being caller at bingo and often could be found matching wits in some type of board game. But no more.
"He can't concentrate long enough," Sarah said.
Grocery shopping also has become a source of frustration. Sarah's instructions to pick up a can of this or a carton of that don't stay with Harold. Soon, he's back empty-handed.
The gradual eroding of his memory was confirmed recently when Harold took a test as part of his medical examination.
Last year, when asked to identify objects and remember simple facts such as his age, the date and the season, he correctly answered 17. This time he scored a disappointing 131/2.
But when instructed to compose a complete sentence, he wrote the same thing as always:
"I love my wife."
Even before he was diagnosed Harold knew something was terribly wrong. "I'd forget things; you could talk to me and three minutes later I'd forget," he said.
The couple are forthcoming about the disease that has taken over their lives.
"We talk about it, we can't hide it," Harold said. "I've learned to live with it, ... but it's a hard feeling, it really is."
Always raring to go, Harold likes to sit in his recliner, hands encased in leather gloves, a blue and gold Navy cap perched on his wavy hair and his jacket zipped up.
"He's always saying to me, 'Are you getting ready?'" Sarah said. "And I say, 'Where are we going?"'
Just then Harold had a thought. "I had a great ..." He stopped and looked around helplessly.
"I don't know what I'm supposed to say..."
As always, he counts on Sarah to finish his sentence. "But I can't read his mind," she said, as frustrated as her husband.
It's been hard watching Harold change before her eyes. "I certainly didn't expect this to happen to him, somebody so active, who could do anything," she said.
Sarah is haunted by memories of a friend who had Alzheimer's. "She went downhill so fast, it was terrible seeing her like that. It made me think about what was ahead for us."
Still, the couple have plenty to be grateful for. "We have a lot of good people who take Harold as he is," Sarah said.
Reducing challenges
The Best Friends Approach goes a long way toward reducing challenging behavior, according to Instasi, who has worked with people with Alzheimer's for more than 10 years.
Trying to convince someone that it's 2001 when he or she insists that it's 1940 is futile since short-term memory is the first to deteriorate, Instasi said.
"Instead of going head to head and waging a battle of wits, just figure out where they're at in their memory and walk with them - ask them what's the best thing to remember about 1940, get some books out, and find things that relate to that era," she continued.
"It could be that the person remembers the past very well but doesn't have the opportunity to talk about it since most people want to talk about the present."
The approach makes it easier for caregivers, who are at tremendous risk for other ailments because of the stress of the job.
Instasi recalled one woman who was considered difficult because she refused to come to dinner or join in activities at her residential facility.
By delving into her life story, caregivers discovered she had been a socialite who loved to dress up each night and considered it unladylike to appear in public wearing a sweat shirt and pants.
Once she started wearing the fancy clothes she was used to, the woman became an enthusiastic participant.
People have been ingrained to think a certain way about someone with Alzheimer's, according to Instasi.
"So often we forget there's a person there, we forget about her feelings and think she doesn't understand, that she's a shell of a person.
"But that person is still emotionally connected, she's very capable of feelings that she wants to communicate, even though she may not be able to verbalize or express them in the same way," Instasi said.
Gentle suggestions
The Best Friends Approach was developed in 1996 by lecturers and authors Virginia Bell and David Troxel, who spent more than 20 years visiting residential facilities and talking to people with Alzheimer's.
After noticing that people with Alzheimer's often were ordered about and given little autonomy to make their own decisions, the couple decided that caregivers would initiate activity by modeling certain behavior and then gently suggesting that the person join in.
The new method brings an optimism to the treatment of Alzheimer's, said Eileen Concannon of the state's Bureau of Elder and Adult Services, who coordinates the Best Friends Approach training.
"We have to look at what we can do to make life as good as possible for people with Alzheimer's and this has been a tremendous help with that," she said. "The cup is half full, not half empty."
More and more people are being diagnosed with Alzheimer's because of the aging population and because advances in the study of the disease have led to earlier diagnosis, according to experts.
So it came as no surprise that a number of volunteers at My Friend's Place had firsthand experience with the disease.
A retired pastor who has counseled people with Alzheimer's, volunteer Sidney Buzzell of Bangor took time out from his training last winter to recall a friend in the early stages of the disease who once had been "vibrant and capable." But now Buzzell said he knows "she still can be vibrant in some ways."
Another volunteer, Charlie Smith, whose mother had Alzheimer's, called The Best Friends Approach an "enlightened way" to treat people. "It's the way we all want to be treated, ... taking the true worth of a person as an individual," said the Bangor man.
Dedicated volunteers
The center came too late for Hollis Parker, who died last fall after being diagnosed with Alzheimer's.
But his wife, Avis, decided to volunteer in his memory knowing how much he would have benefited.
"It would have been wonderful to have had a place for him to go and socialize," said the Bangor woman. "He liked to reminisce - he loved talking over and over about the places he had been, the trips he took. He worked as a salesman on the road, so he knew a lot of people all over the state and he could tell some wild stories."
Volunteer Alice Dyer of Bangor was moved to tears recalling her husband, Arnold, who died two years ago.
"This brings back a lot of memories," said Dyer, whose husband participated in an adult day center once a week.
"I didn't dare leave him alone, and so this was a chance for me to have a few hours. It made it a little easier," Dyer said.
For volunteer Frances Allen of Hampden, the training was a way to reaffirm relationships with a couple of friends who have Alzheimer's.
Visiting them had been awkward, Allen recalled, and she couldn't bring herself to return.
But she'll feel more comfortable from now on. "Now I know how to talk to them," Allen said.
People with Alzheimer's suffer a double dose of isolation, not only because their friends stop coming around, but also because they tend to withdraw from activities, according to Instasi.
Especially in the early stages of the disease, people "recognize that something is different and they're frightened," she said
Adult day centers may be the wave of the future since the tight labor market has made it increasingly difficult to find caregivers to come into homes, according to Michaela McCarthy, respite coordinator for Eastern Agency on Aging's Partners in Caring program.
Day centers not only offer the caregiver a break, but they provide an emotionally safe environment for those with Alzheimer's, said McCarthy, whose agency helped start the center.
"People can look forward to going there knowing they don't have to feel self-conscious about their memory loss," she said.
Last month's opening day was a huge success, according to My Friend's Place director Barbara Fister. Six volunteers got acquainted with the three participants, who played games, sang and listened to a Lawrence Welk recording.
The staff brought out a 1941 Life magazine so the group could reminisce over the old advertisements, Fister said. The activity was especially meaningful for the two men who served in the Navy.
For Fister, whose father was diagnosed with Alzheimer's before he died several years ago, and whose mother now is in an advanced stage of the disease, the program is a bittersweet reminder of what could have been.
"I wish I had something like this for Mom and Dad," said Fister, who was moved to take on the director's position because of her personal experience with Alzheimer's.
Sarah Arnold was equally enthusiastic about the program.
Harold had been blue earlier that morning, she reported. But his spirits lifted and he ended up having a grand time.
Later, hugging his wife, he told her, "You should have seen those old people!"
Meanwhile, Sarah and her daughter Susan Harriman of Bangor enjoyed a leisurely lunch - something they rarely get to do.
During Harold's next time at the center, Sarah plans to tackle a gardening project. Succeeding visits will have to take care of themselves, since she doesn't allow herself to dwell on the future.
"I don't think you can look ahead like that," Sarah said firmly. "You just have to take each day as it comes."
My Friend's Place is open Tuesdays and Wednesdays from 10 a.m. to 2 p.m. at the Essex Street church. The program, in which a volunteer is paired with no more than two participants, costs $6 an hour. For more information, call 945-0122.
