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What it’s like ... when your young mom has Alzheimer’s

This is part of a series that looks at extraordinary experiences in personal health. Share yours at health@globeandmail.com.

About four years ago, my mom and I were hanging out, and she was talking about her own mom. Then she asked me, "So, what is your mom like?"

It was pretty scary. I thought, "Oh my God, are we here already? Is this already happening?" It had been only three years into the disease at that point.

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Alzheimer's disease runs in our family. My grandfather was diagnosed about 10 years before my mom's diagnosis. The progression of his disease was quick, but a lot easier to understand for me because he was in his 70s. She was in her 50s.

I was in the room with my mom when she was diagnosed in 2008. It was just the two of us there and the first time they say that word, "Alzheimer's," unfortunately, you know the ending before you even have to think about it. It was hard, definitely. But one of the things about this disease is you cannot really get too surprised because it is always declining. There is some sense of comfort in the lack of improvement. It's predictable. There are no ups and downs. It's kind of the nature of the disease.

When my mom got sick, she was a smart, driven woman who ran a successful public relations firm. I was 19. Our relationship was not great at that point. Like most teenage girls and their mothers, we had our issues.

So I was resentful at the time because we did not have a great relationship, and then my sister and I were taking care of her. Our roles had become reversed.

There were things that I missed out on. Most people do not understand that Alzheimer's is a disease that requires full-time caregiving. My mother being sick meant I had to bail on friends because I'd have to go home and take care of her, and my friends, also being young, didn't understand that. Outsiders would see my mom as being physically quite healthy, but my sister and I could not leave her at home alone for more than about 10 minutes. There were instances when my mom would put a plastic electric kettle on the stove and turn the burner on.

A few weeks after she asked me about my mom, it went from "Who's your mom?" to "Who are you?" I would have been about 22, turning 23. I think there was a sense of familiarity with me for another couple of years, but about two years ago, there was no understanding of who I was any more.

She kind of held onto my dad the longest, which was cute and telling. She did not know who he was, but she was more familiar with him. So there were moments when she would still be able to form sentences, and she would be a little bit flirty with him in a I'm-a-12-year-old-girl-and-this-is-a-crush kind of way. She started calling him "mine," and stuff like that. This reverse-aging process is very strange to watch, especially in somebody who has a fairly healthy body.

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She is currently in her later stages of Alzheimer's right now. Parkinson's disease has taken full effect on her body. Her condition is terminal in every way. For just shy of a year she has been in a wheelchair. In 2015, she moved into Belmont House, which is a fantastic home for seniors in Toronto, after being cared for at home for seven years with the disease. Seven years was a long time from my family's standpoint. Moving her to Belmont House was a necessary but difficult decision, considering that she was only 61, making her the youngest person there by about 20 years.

As I near the age of 30, I'm much less resentful of my mother's diagnosis. I realize it is part of my life now. It has made me a much more open and understanding person, and in some ways, I'm grateful, because you really do see that there is hardship in everyone's life. To have gone through this at my age is almost preparation. Most people are forced to care for their parents in their 40s and 50s. I've done this in my 20s.

Carolyn Poirier is a co-founder of the Memory Ball, an annual event in Toronto in support of the Alzheimer Society of Toronto. Now in its fifth year, the Memory Ball takes place on April 2. Poirier hosts the event to honour the fond memories of her mother, Jane Holland-Poirier.

As told to Wency Leung

Read more stories in this series here.

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