Alex Pierson: Have we forgotten how to treat those with dementia?

Have we forgotten how to treat those with dementia? Or did we ever really know at all?

Unless you have had a loved one inflicted with the cruel disease it’s hard to understand its devastating impact. Not just on the inflicted person who dies a little more each day but those around them who have to cope with this new normal. My Step dad just died after 12 agonizing years of this thief disease. He was vibrant, funny and LOVED to work. He loved a good party and if you didn’t invite him he’d invite himself and make your event even better. He was a rarity. A caricature. Then one day he came home with a strange tale that lobsters were crawling on his wall and he had been involved in a bank robbery. That was the day we had to admit Ted was being taken by Dementia.

From there, the Ted I knew. Who I got into mischief with. Who made everyone laugh was no longer the Ted I knew. It changed everything. And everyone around him. He continued to work- but eventually couldn’t make sense of his business. He continued to drive but then left the roof down in the middle of January and had his licence taken away. He wanted to go out but eventually no one asked him. Sadly, my wedding was one such occasion. To Ted he was the same man but he was slipping away and we didn’t know how to act around him and worse, we were scared of “what might happen”. I still laughed and joked with him but I didn’t know how to discuss the elephant in the room. The reality of his fate. And eventually family conversations mainly happened without Ted.

After all, how could he be part of a conversation he may not understand? Especially when it came to putting him in a home. A last resort, but a reality of this cruel disease. While Ted was very much alive he was a danger to himself getting lost and doing things like leaving the stove on.

Like so many afflicted by this disease, Ted didn’t want to be in a home. He tried to sneak out every time we visited. See you later he’d say to the nurse and he’d shuffle out the door. We’d take him back in riddled with guilt. Was he angry? Did he understand why he was there?

Dementia makes people uncomfortable. Mainly those who don’t have it. I wanted so badly to see Ted as the person he was, when maybe I should seen him for who he was In that moment. Which was, still a funny old man, who still loved his vodka, his Benny Hill and his chocolate.

With more than half a million Canadians living with the disease, and an aging population that will drive that number up, Alzheimer’s society of Canada, has launched a new awareness campaign. They say stigma is one of the biggest barriers facing those robbed by this disease. Once someone is diagnosed with dementia, and come to terms with it, it’s those around them who change the most. That instead of living in the here and now we tend to treat the Ted’s of this world like they are at the end of their life. We make them more disabled then they are.

It took 12 yrs for Dementia to finally take Ted from us, but right up until the end he knew who I was. His brain was foggy but he was very much alive. He was, after all, living in his here and now. It was the rest of us trying to figure things out.

 

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