January is Alzheimer’s Awareness month and for Danielle Duvauchelle, it’s time to dispel some of the myths and misconceptions surrounding the disease.
Duvaucchelle is the support and education coordinator for the Alzheimer Society and she said there’s an element of fear and stigma surrounding the disease that causes some to eschew seeking medical help, even when they suspect that something is wrong.
“It’s a matter of educating people about Alzheimer’s so they can recognize that each case is different and that, most of all, these people and their families should not be left alone to deal with this illness,” said Duvauchelle.
It’s a message echoed by Sooke’s Marwick family whose own struggle with Alzheimer’s disease has been a difficult, but transformative journey.
Jeanette Marwick, 83, was diagnosed with Alzheimer’s eight years ago after her daughter, Susie, noticed certain behavioural changes in her mother.
“She had become quite paranoid and aggressive and gradually we noticed that she was just not taking care of herself,” said Marwick.
The process of getting her mother diagnosed was a difficult one and it wasn’t until she got the help of a geriatric psychiatrist at Royal Jubilee Hospital that the situation improved. (See Susie Marwick’s letter to the editor on page A8).
“It was a very difficult period during which there were several hospital visits as a result of my mother overdosing on drugs that she was taking for her heart. She would simply forget that she had already taken pills or would take the wrong medication for the wrong reasons…like nitroglycerin for indigestion,” said Marwick.
The family was lucky enough to get a spot at Ayre Manor last year, but while the living situation has improved, the cognitive decline they are forced to witness continues to be heartbreaking.
“I picked her up at Christmas to bake cookies at my home and she was quite happy. At one point though, she smiled and told me that she remembered, years ago, baking cookies with Susie and how much fun that was. She had forgotten that I was Susie.”
But Alzheimer’s disease doesn’t only affect the aged – that’s one of the myths that Alzheimer B.C. hopes to dispel.
When Geoff and Annemarie Travers learned that Geoff Travers’ sister Kathy was experiencing some memory loss and some behavioural changes, Geoff Travers had to sit down with Kathy and have the difficult discussion that led to her eventually being diagnosed with early onset Alzheimer’s.
Kathy was 62 at the time.
While the diagnosis came as a shock to the family, it prompted Geoff and Annemarie to learn as much as they could about the disease. Determined to do what they could, they took Kathy on a trip to Greece and Geoff Travers described how he saw a marked improvement in his sister during that time.
The couple followed up on that trip by undertaking a “Camino for Alzheimer’s Awareness” during which Annemarie walked more than 900 kilometres and Geoff walked over 1,600 kilometres across Europe to raise awareness of the disease (see caminoforalzheimers.blogspot.com).
“Loneliness is probably one of the worst impacts of Alzheimer’s as people don’t know how to engage with someone in this situation, and just stop visiting,” said Annmarie.
It’s a sentiment echoed by Jeanette Marwick’s son, Bob, who moved back to Sooke to be close to his mother while she lives with the disease.
“I know that I visit her and sometimes she knows who I am and other times she doesn’t. But that doesn’t matter. You’re there to comfort them and your own comfort has to become secondary,” said Bob Marwick.
He added that the message he wants to deliver is that a person with Alzheimer’s has not ceased to exist. Their memory and cognitive ability have been damaged by the disease, but the human being they were remains. He urged those with relatives suffering from the disease not to give up on visiting or to make those visits about trying to force them to remember.
“You don’t want to get them upset about not being able to remember. If you’re doing that, you’re doing it for yourself, and not them. Just talk to them and, sometimes, they will remember something from the past, and their face lights up and, at that moment, they’re happy.”
For Susie Marwick, the journey can be an emotional one, but she is intent upon travelling the road with her mother for as long as she can.
“It’s hard. It’s the longest funeral you’ll ever attend, but I know that mom is still there in one sense. She hasn’t disappeared, although she can’t remember a lot of things and gets confused,” said Marwick.
“It’s sometimes difficult to realize that, despite the fact that they physically appear as they always have, they may no longer know who you are. But when we visit, none of that matters. For those 20 minutes or so, she’s happy and engaged.
I think my granddaughter said it best one day when we went to visit and my mother didn’t recognize her. My granddaughter looked at me and said, ‘It’s OK Gramma, it’s not her heart that’s broken, it’s her brain.’”
With those words from a child, Marwick realized that, while the disease might take a part of her mother, the part that loved and was loved remained.
More than 747,000 Canadians are living with Alzheimer’s or other dementia. More than 70,000 of those live in B.C.
There is no cure for Alzheimer’s and while the disease itself does not cause death, it destroys nerve connections in the brain, making it progressively more difficult to do ordinary things like move around, swallow and feed yourself. Complications resulting from that decline are what commonly result in death.