Photo: Barry Gerding/Black Press Craig Burns (right) and Guy Bird.

Dementia journey the long good-bye

More than 70,000 people in B.C. have been diagnosed with dementia

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Craig Burns first started to notice something was awry with his thought processes when he was 53 years old.

The administrative responsibilities he carried as the Red Cross provincial manager for client services in B.C./Yukon, were becoming a challenge.

He started to forget things and had to review reports he had just completed thinking he missed something.

He would delegate tasks to others that normally he would deal with himself.

While Burns didn’t immediately realize he was experiencing the early signs of Alzheimer’s disease, the disease was not unknown to him. He was a caregiver for his mother as Alzheimer’s took a toll on her life.

He started asking his physician about his memory loss issues, took the standardized dementia memory test and faced the “you are just stressed at work” doctor appointment conclusions.

He was finally diagnosed in 2016 with Alzheimer’s from both his physician and also as a volunteer participant in a dementia drug testing study conducted by Medical Arts Health Research group in Penticton.

As part of the research data collection, Burns was given a brain position emission tomography scan which confirmed the signs of physical deterioration of his brain, specifically the formation of amyloid plaques and neurofibrillary tangles thought to contribute to the degradation of nerve cells.

He continues to travel to Penticton once a month for the research study, in week 150 of what will be a 500-week study, and undergoes a PET scan every four to five months.

Life for the 65-year-old today is one of adjustment.

He has crossed the difficult “why me” emotional hurdle of being diagnosed with Alzheimer’s and chosen to embrace that reality by learning everything he can about a disease that forced him to retire from his job in 2016 — two years earlier than planned.

His cell phone has become his electronic sticky note reminder. When he gets a thought about something, he records it on his phone because the memory will disappear 15 minutes later. He can get agitated in public gatherings, so is mindful to move away if it raises his anxiety level.

“I was having a coffee in a coffee shop with someone recently and about 10 feet away there was another group of people just talking and laughing, just acting normal. But I became so agitated by what noise they were generating that I had to turn away so they weren’t as noticeable to me… sometimes it can feel just overwhelming,” he said.

He is an active participant in a Kelowna dementia support group, and volunteers as a test patient with UBC Okanagan medical students to help them learn how to interact with dementia patients one-on-one.

And this year he is a hands-on honoree for the annual Alzheimer Society of B.C. fundraiser walk in Kelowna on May 5.

Burns is part of an alarming statistic, a health care crisis coming our way as baby boomers continue to age, that indicates one in three seniors have some form of dementia, one in two over the age of 85.

In B.C., it is estimated 70,000 people have been diagnosed with dementia, but that number is likely larger since many people who suffer from memory loss or declining motor function symptoms choose to live in denial rather than face the reality of a positive diagnosis.

Guy Bird, chair of this year’s Investors Group Wealth Management Walk for Alzheimer’s in Kelowna, is familiar with Burns’ story because he has been living it as a caregiver for his wife Maureen the past four years.

Bird is a motivated advocate for the Alzheimer Society, for how it can help both those diagnosed with dementia and the caregivers.

“Some call it a voyage, or a journey, but no two journeys are alike,” said Bird, illustrating the need for patient and caregiver support services to help people cope and share their individual frustrations.

“It’s like Jan Arden’s song A Long Goodbye about her mother who recently died from Alzheimer’s. You are ultimately faced with saying good-bye to someone twice.

“For people with Alzheimer’s or their form of dementia, their reality is just different. At first, you argue with them about it but then you realize as time goes on it’s not worth it. Better to just to go with it.”

Burns cites a quote he heard on a radio interview program in reference to Alzheimer’s disease: “It is like your memory is a bookshelf and the top drawers starting sliding off.”

Bird offered an example of his wife’s memory loss when she was trying one day to recall the name of a member of her past bowling team. “She couldn’t remember his first name, and I said it’s the same as my middle name. Even though we have been married for 53 years, she couldn’t remember my middle name.”

With January being Alzheimer’s disease awareness month, one of the goals is to help reduce the social stigma faced by those afflicted with dementia diseases, fueled by negative attitudes and misconceptions held by friends, family and professionals that can discourage people from seeking a diagnosis, treatment or support.

A recent poll by Insights West found that a majority of British Columbians surveyed knew someone living with dementia but that 60 per cent said they’re not confident on how to deal with someone they encounter needing assistance who might be living with dementia.

Burns says that stigma shows itself in how people like him with dementia can feel marginalized, to literally not be included as part of the conversation they are struggling themselves to be a part of.

“Just because I have dementia doesn’t mean you should treat me differently. It is not about giving someone sympathy. It is about giving understanding because I sometimes can’t quite tell you what I want to say,” Burns said.

Bird says his wife is reticent about social group settings because she might be asked something she knows the answer to but can’t respond.

While for elderly patients dementia can be incapacitating, Burns says for those at his age or younger, they can still strive to live vital lives in spite of their disease symptoms.

“One of the things I had trouble getting over after being diagnosed is focusing on ‘the end.’ You know where this is headed and there is no cure. But I have gotten to where I want to be proactive in my life now, not to make everything about myself but to go out and do something for others because I still can,” Burns said.

Bird said his goal is to raise $50,000 for this year’s Alzheimer Walk in Kelowna, which last year generated $30,000.

He wants to see more pledge teams participating in the walk and the public to realize while the walk is an event focal point, other festivities around City Park will include entertainment, donated draw prizes, food concessions and perhaps most importantly access to information from the ASBC both for caregivers and those diagnosed with dementia.

“The walk is a major source of funds both for research and support programs,” Bird said. “The reason that is important is you don’t have to look very far, given there are 70,000 people diagnosed with dementia in B.C. alone and that number is only going to grow, to find someone who is directly or indirectly affected by this disease.”

To mark Alzheimer’s Awareness Month, an open house will be hosted by the ASBC chapter office in Kelowna on Friday, Jan. 18, 3 to 5 p.m., 1664 Richter St.

A wine and cheese networking event will also be held Wednesday, Jan. 16, 4-6 p.m., at the Chartwell Chatsworth seniors’ residence in Kelowna, with Bird and Burns as guest speakers.

Chartwell has set a target to raise $1,000 for the Kelowna Alzheimer’s Walk in May and is challenging other local seniors’ residences to do the same.

You can make a donation or register a team for the fundraiser walk online at www.walkforalzheimers.ca.



barry.gerding@blackpress.ca

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