State group focuses on Oxford and Franklin counties as it spreads information and answers some puzzling questions.

The woman was 90, and for two years she called Rangeley police at least once a week.

“There’s a woman in my house.”

“Someone’s stealing my money.”

She didn’t have many relatives and police knew she hoarded cash, stashing it in bags. Maybe someone else had discovered that, too. Maybe they were trying to rob her.

Officers responded every time, and every time, nothing. She even moved.

It still happened.

“As time goes on, you see there’s nobody crawling under the house,” said Chief Phil Weymouth.

Police were beyond frustrated. Calls only stopped when, eventually, she left town. Weymouth didn’t hit on the culprit until last month, listening to Peg Gagnon from the Alzheimer’s Association. All that tail-chasing and suddenly it made sense.

The elderly woman had been catching her own reflection in the mirror.

“I never thought of that,” Weymouth said. “I was just mesmerized (by Gagnon’s presentation). It was like you were getting answers to the questions for years you wondered about.”

For the last year, the Maine chapter of the Alzheimer’s group has focused on Franklin and Oxford counties, talking to law enforcement, helping caregivers and, now, coaching respite volunteers.

The two counties are older, rural – part of that initial reason to come. Alzheimer’s isn’t a reportable disease, but estimates put the number of cases here at 2,000. There are another 2,400 in Androscoggin County.

“The reality is Alzheimer’s disease will touch every single one of us at some point,” Gagnon, the chapter’s information and outreach specialist, said recently.

There are an estimated 30,000 cases of Alzheimer’s disease in Maine. According to the national group, the state has the third-highest rate of deaths due to Alzheimer’s in the country. Maine’s old, Gagnon said; age is the biggest, unavoidable risk factor.

It can be a frustrating disease: There is the confusion about what having Alzheimer’s really means, the difficulty getting respite care and services, and the myths about Alzheimer’s, like the inevitability that victims will become angry and lash out.

“Getting a diagnosis is not a great experience, either,” Gagnon said. “Franklin County doesn’t have one geriatric specialist, not one.”

Communities kicking in

The state chapter receives more than 130 calls a month on its 1-800 help line. Neither state nor federally subsidized, it’s kept going with money raised from an annual Memory Walk and a golf tournament. A $40,000 grant from the Betterment Fund, set up by the late William Bingham II of Bethel, is supporting the attention on Oxford and Franklin counties for two years.

Gagnon led a series of town meetings on Alzheimer’s and dementia in Wilton last spring, then Bethel in the fall. She’ll kick off the next series in Farmington Wednesday, then Bethel next month.

It’s a chance for caregivers, neighbors and friends to talk frankly, ask questions. She shares strategies like handling money and making the most of activities together.

“People tend to stay away (from those with Alzheimer’s) because they don’t know what to do and they don’t know what to say,” Gagnon said.

She tries to “dispel some of the myths like, ‘He’s not violent yet.’ Some of the happiest, happiest people I know have Alzheimer’s. For some, it’s almost as if they have become happy people because they no longer remember the baggage.”

They forget what was said at Thanksgiving. Or they forget they never really liked their sister.

Elaine Nuzzo attended the Wilton series. The Farmington woman took her father out of a nursing home so she could care for him. He has vascular dementia.

“My support for myself is to get a lot of information,” Nuzzo said.

She came away with new tips, like keeping a piece of dirty laundry around for police tracking dogs in case of a search, and that the smallest aliments can knock people with dementia for a major loop.

Later, when her father got a bad head cold and suddenly “couldn’t get out of bed, didn’t know what he was doing, I didn’t panic,” she said. “A couple of Tylenol, a couple hours,” and he was OK.

After hearing enough community interest, Gagnon also scheduled volunteer respite training for Bethel in April. Over two nights, friends and neighbors can learn the stages of Alzheimer’s and communication skills.

“It really has come down to community’s needing to kick in and help communities,” she said. “Sometimes it’s as simple as calling (a caregiver) from the local Hannaford and saying, ‘Listen, is there anything you need?’ Sometimes it’s as simple as, ‘Listen, I’m going for a walk, could I take George with me?'”

‘It’s not happening in my family’ – yet

After hearing Gagnon speak at the Franklin County Sheriff’s Office, Weymouth told the Rangeley fire chief: “All these searches we’ve been doing wrong.”

Going out in the woods and calling someone’s name? Not always the right thing. He wants staff to hear that straight from the source.

Gagnon is coming up to Rangeley on Thursday, Feb. 21. The evening is mandatory for Weymouth’s officers, but he is encouraging the public to come out.

“I hope people do attend. A lot of times it’s: ‘It’s not happening in my family,'” he said. “It may not be this year, but it may be in a couple.”

Gagnon said when she talks to officers, the first thing she does is try to get them to understand the disease. It’s not a mental illness. The person they’re dealing with isn’t trying to be difficult.

“Brain cells are dying. This person’s brain is shrinking – there isn’t any ulterior motive to the behavior,” she said.

Motivators are basic: getting free from pain, free from stress, finding a safe place.

Nearly seven in 10 people with Alzheimer’s will wander, and those that wander once are more likely to do it again. She tells police not to go out in the woods yelling the missing person’s name; they’re going to get scared and hide.

“The mistake that families make, and the average person makes, is in assuming that people get lost because they can’t remember where they are,” Gagnon said. “Getting lost has more to do with the effects of the disease on the visual cortex of the brain than not remembering ‘I live in Portland or Farmington.'”

Their concept of where “here” is is different, she said. As are visual perceptions. For instance, the color black can look like a gaping black hole.

Weymouth said another case from last winter makes sense now, too. Police got a report of a woman face-down in a snowmobile trail. She wasn’t dressed for the outdoors; initially, it wasn’t clear she was alive. Ultimately, she had hypothermia, but was otherwise OK. Her rescuers were stumped; there were obvious trails she could have followed for help. Some guessed maybe she was trying to kill herself.

Weymouth said the woman had driven her car to a local business, gotten out and started walking in a straight line. She walked and walked, over fallen trees, across a lake – “thank God it was frozen” – over bushes, big rocks.

Gagnon told police that people with Alzheimer’s “don’t go around (objects), they’re not thinking like we are. They go right through it.”

The woman wasn’t trying to end her life, Weymouth said. “The reason she collapsed was because she was friggin’ worn out.”

Gagnon said that by the end of her two years of work in Franklin and Oxford counties, she has a hope – one that is already within reach.

“My hope is that when – and this may sound really ridiculous – when an employee at Pizza Hut talks to one of her co-workers about the fact that her father or mother or husband was just diagnosed with Alzheimer’s disease, that that co-worker will be able to hand that woman our phone number so that she can get the information she needs.”


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