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Edgemont couple embraces Alzheimer’s

January is Alzheimer’s awareness month
Pic

Carol Hanlon remembers being unnecessarily lost on a cruise ship for three hours. Her ordeal was out of ignorance.

Hanlon has Alzheimer’s and is not ashamed to talk about it.

“I’ll tell anything you want to know – just ask,” she says.

The Edgemont Village resident is fighting back against a societal stigma around Alzheimer’s. Hanlon is sharing her story as part of a new Alzheimer Society of B.C. social awareness campaign – I live with dementia.

A recent survey of 1,500 Canadians conducted by Leger found that 46 per cent of them would not want know if they had dementia.

A fear of discrimination was prevalent among 61 per cent of respondents. The survey also found only five per cent would learn more about dementia if a family member, friend or co-worker were diagnosed.

Hanlon hopes the new campaign will help to eradicate the stigma. She admits it wasn’t easy opening up about her diagnosis at first.

“I didn’t want to talk about it,” says Hanlon. “As long as I had some meds and I could keep myself grounded I felt that it was nobody else’s business but my own and Bryan’s.”

Bryan Karrel is Hanlon’s husband and caregiver. There’s a sparkle in her hazel eyes as she looks across the table at him.

Hanlon was a widow and Karrel a divorcé when they met at a social night on a golf course 27 years ago.

“It was game over,” says Karrel, with a wide grin.

The two bonded over a mutual love of bridge, curling, golf and travelling. Since then the couple has seen the world together.

It was on a cruise to the U.K. a couple years ago when Hanlon and Karrel learned that not everyone takes Alzheimer’s seriously.

Hanlon had made a wrong turn while exiting a gift shop, while Karrel was waiting outside a different door listening to the jazz band. 

For three hours Karrel searched the cruise ship high and low looking for his disoriented wife.

When he told crew members that Hanlon had Alzheimer’s, they dismissed him. All Karrel wanted was for them to turn on the security cameras to try and locate his wife.

Karrel was told “no,” as it would have meant getting the captain involved and potentially interrupting the cruise. 

“I felt so badly for Bryan because I had put him in such a difficult position,” says Hanlon, who was found on the same deck after three hours.

Hanlon’s symptoms started around 2010, before the official diagnosis arrived two years after.

“I was looking around me and thinking that other people were off – where it was me that was the different one, not them,” says Hanlon of her early Alzheimer’s days.

Karrel became acutely aware of his wife’s repetitive words.

“Hi, how are you? Hi, how are you? Over and over,” explains Karrel.

Extremely embarrassed, Hanlon would get mad at her husband if he exposed her secret.

“Well, I’ve got a fair amount of pride and I don’t want people to think I’m stupid,” says Hanlon.

Karrel will step in gently when a member of his wife’s bridge group becomes antsy with the pace of the game or a mistake is made. He reminds them to be patient.

Hanlon herself had preconceived notions of Alzheimer’s.

 “I thought, ‘How the hell can this be happening? I’m a very intelligent person,’” says Hanlon, who will turn 76 next week.

The fact is Alzheimer’s disease strikes people indiscriminately.

More than half a million Canadians are currently living with dementia, including Alzheimer’s.

It took the support of her husband for Hanlon to accept she has a disease for which there is no cure. Alzheimer’s manifests differently in each person it afflicts.

“My memory is the pits,” says Hanlon, who maintains a sense of humour.

It’s Hanlon’s short-term memory that’s shot, however if you ask about her childhood she’s sharp as a tack.

Hanlon still cooks, with help from her husband. And she loves reading. Mystery novels are her favourite.

Don’t be afraid to talk to someone with dementia and treat them with respect, like any other person, says Bronwyn James, support and education co-ordinator at the Alzheimer Society of B.C.’s North Shore and Sunshine Coast support centre in Lynn Valley.

“They have an illness, but they are still themselves and … are a part of the community and have a lot of value to add,” says James.

The goal of the social awareness campaign, she adds, is to “show a face of dementia that people maybe don’t expect,” and to dispel the myths, including the idea that it’s only an old person’s disease.

James says the moment some people hear the word Alzheimer’s they get an image in their head of aggressiveness or resistance to care.

“That’s a small proportion of people with the illness,” explains James.

Dementia is a term which describes a general group of brain disorders, including Alzheimer’s.

Symptoms include memory loss, impaired judgment, and changes in behaviour and personality.

All three North Shore municipalities, according to James, are working with the Alzheimer’s Society of B.C.  and other stakeholders on creating a dementia-friendly community plan.

 The vision is have community members, from bus drivers to bank tellers to waiters, understand dementia and not be scared to approach a person who might need help.

Someone with dementia, explains James, might isolate themselves after they’ve had a bad experience in public.

“I want everybody to know about Alzheimer’s and to understand it,” says Hanlon.

Both her and Karrel attend support groups through the Alzheimer Society of B.C., for the caregiver and the patient.

“There’s a comfort in knowing I’m not alone, that’s the biggest thing,”  says Hanlon.