by Julia Dima
George Pierson likes puzzles. His wife, Kelly, says he always has. In the third wing of the dementia ward at Pioneer Village, George is staring intently at his new puzzle. It’s a wooden block map of Canada, with each province and territory a big wooden block piece, designed to teach kids what the country looks like.
“He sometimes forgets the way Canada is laid out,” says Kelly.
In the map, George has placed Alberta upside down where Manitoba goes, next to British Columbia.
The map is disjointed, but George looks content as he puts the pieces in, his son Jordan helping him along.
“Even though he can’t really build a puzzle anymore, you can still see him trying to line all the pieces up. It’s disheartening to say, ‘no that’s not how that works,’” Jordan says.
George Pierson is 61. He has early on-set dementia. George is a father of two, and a husband. When he could work, George was a carpenter, and worked on set design at CBC in Regina. When his wife Kelly asks him if he remembers where he worked, George hesitates, and eventually says Canadian Tire. Kelly says he’s never worked at Canadian Tire. But he remembers enough to make the word association. George was last able to work three years ago.
According to the Alzheimer’s Society of Saskatchewan 1 person in every 1,000 develops early on-set dementias. Unlike other dementias, most cases of early on-set dementia are genetic. George’s mother suffered the disease.
“George was surprisingly accepting of what was happening,” Kelly says, “I think it was disheartening for him, but because his mom had it, he accepted it more because he knew what to expect … But they do go through a period where they know something is going terribly wrong. They get agitated, they get frustrated, and they also are scared and fearful. And he’s past that stage now, and that’s comforting to us, because you can’t help them in that stage. Knowing you are losing your mind must be the worst feeling.”
Kelly says that the family knew something wasn’t right long before doctors diagnosed George.
“When I look back, this started at least five years ago, maybe longer. At the time you don’t know what’s going on. I just thought he was going through male menopause or something. I just thought ‘what’s up with George, he’s acting kind of strange, and forgetting things,’” Kelly says, “He lost his car once. They never found it. It was totally lost, so we knew something was wrong. He lost a lot of wallets, lots of IDs, his keys. He just did a lot of really strange things. He flooded the house, had a fire in the microwave. He went out in the winter without boots on.”
The ward where George now lives is specially designed for dementia patients who wander, with secure doors and windows. Before George was placed in Pioneer Village, he was in a day program for dementia patients, since his wife and kids could not take care of him during the day. Nonetheless, Kelly says, George wandered, and his safety is what pushed the family to their decision to place him in a nursing home.
“He was going to the day program and he really liked that. But, it’s just, the kids were in school, I worked, and the paratransit bus would pick him up at about 9:30, but we would all be gone by that point, so he’d have the opportunity to get into trouble. He was getting lost, and we were really worried about him getting hit by a car or freezing,” Kelly says, “And then finally, in September of last year, I was on a business trip, and George ended up going to the psychiatric centre at the general hospital because the police were picking him up, he was walking on Lewvan Drive in the middle of the night. That is when they put him in the psychiatric centre because that was the only place for him to go, until about a month later, when he was put in the general wing of the Pasqua Hospital, and then he ended up here at Pioneer Village.”
The decision was hard, but needed to happen.
“It was a sigh of relief for all of us, because we knew he was safe, and that was the most important thing to us, his safety,” Kelly says. “And our sanity. My son was just starting university, my daughter was in third year, I’m on the road a lot, so they would have to look after him, but they’re young adults and want to have a life. So it was hard, because they had to babysit their dad, and that’s not how it should be.”
Not many teenagers would imagine having to babysit their fathers while trying to graduate high school. But Jordan managed caring for his dad, who was too ill to come to his high school graduation.
“In some ways, people didn’t understand what I was going through, but I had a friend whose dad died of cancer. So he knew what it was like to lose a parent. Because at this point in life, George isn’t really my parent anymore. He is my father, but he’s not my parent, because he can’t parent me,” Jordan says.
“I miss George,” says Kelly. “I miss the old George and so do the kids. We miss his physical presence, but also George … We just miss having him there. I miss having a husband. Like, I miss him just as a partner in life, to help make decisions, and as a co-parent.”
To look at George without knowing he has dementia, he looks like an average man in his 60’s. He’s tall, has a bright smile, and wears colorful sneakers. Having been very active all his life, George’s exterior doesn’t match the deterioration in his brain.
“You can see dementia if you’re aware, but if you’re not aware, you can’t see it. You figure it out, but at first, it’s misunderstood,” Kelly says, “It is a long goodbye because George is physically healthy. It is a slow process because his body will keep going but his mind won’t. And eventually, his mind will shut down his body. So, it’s hard to deal with, and it’s sad when you see that they don’t have a mind of their own anymore.”
George is mostly non-verbal while his wife and son tell his story. Occasionally, if Kelly laughs, George laughs as well. He can answer yes or no questions, and remembers that his name is George Pierson. Kelly says he’s sharper in the mornings, but it’s supper time, and George is quiet.
“Some days George is really together. Earlier in the day the better, when he’s had his sleep. He’s more alert in the morning,” Kelly says. She asks George if he remembers her name, and he stares at her for a long time with a furrowed brow, before answering, “No.”
“It is scary when he forgets us, especially for Jordan, because it is his dad,” Kelly says. “And for the big things in your life, too. Like, Jordan is not getting married anytime soon, but you’d like your dad to be there for his wedding. He wasn’t even well enough to come to Jordan’s high school grad. It’s stuff like that. Jordan had really good counselors at school, and they told him he needed to prepare for the day when his dad won’t know him. It’s something you don’t want to think about, but you think about it every day.”
Despite the pain, Kelly says there have been lessons learned through George’s journey. And blessings.
“If we knew he’d get this disease, it would have changed the way we do things. We would have probably done more fun things instead of working all the time. Because there’s so much more to life. We probably would have traveled more, and had kids younger, knowing what we know now, so that they would have had their dad for longer,” she says. “But it’s brought us closer in a sense, because we know our time together is limited. And I think we should all take a page out of that Alzheimer’s book, and we should all be kinder to each other.”
Kelly says there are many things she wanted to do after retirement with George, but the illness has changed those plans.
“Sometimes I watch people, and everybody is so focused on success, but what is success? To me, it’s just having a family that loves you, a good set of friends, and just enjoying the little things in life. They don’t have to be big. The little things are all that matter to me anymore. So, I’m looking forward to taking George out of here this spring, and taking him for a nice little walk. Just to see the flowers and the birds.”
The Pierson family hopes to raise awareness and understanding about dementia and early on-set dementias to help other families prepare for a diagnosis. Because early on-set dementia runs in the family, there’s a higher chance that Jordan could develop it, and new research being done in the United States can predict dementia with a blood test.
Kelly says she’s not sure if she’d want to know if she was going to get the disease. But Jordan says his experience with his dad has him considering it.
“It’s far down the line, but I think I’d like to know so my family can be prepared. We kind of knew as he started to go downhill that we misinterpreted. But I want my family to know. I want to know so I can do some of the last things I want to do before my mind is gone, but it’s more so for my family to know that I may not remember them,” Jordan says.
As the sky darkens outside the window at Pioneer Village, Kelly and Jordan have to leave to go eat supper. The family visits George every day, and Kelly assures George they’ll be back tomorrow. George runs to the exit, ready to leave with his family.
“He often does this when we have to leave,” Jordan says.
Kelly gives George a kiss, and they leave for the night.
For Kelly, coming back every day is important.
“Just because someone has Alzheimer’s, you shouldn’t forget about them just because they forget about you. They’re still human, and just because their minds aren’t working, they still love to love. It’s so easy to just close the door and walk away because you’re busy living your own life.”
