Becoming a caregiver


It started when I was 13. My mom came in my room and said, sat me down and said, “I have something to tell you.” She was actually originally diagnosed with Lou Gehrig’s disease—with ALS—so I was told that she had ALS and that she would probably die within the next few years. And then I’m not sure exactly when they discovered that she didn’t have ALS, [but] she actually had Multiple Sclerosis. And it’s never been so happy to hear that you have MS as opposed to something else.

I don’t remember when the second conversation was, but she told me at some point, “Oh, I don’t have ALS. I have MS”. So, we were obviously quite pleased with that result as opposed [to ALS], but the year probably—or two years—leading up to her actually coming to me and telling me that she was falling a lot and having a lot of problems, she’d been going back and forth to the doctors and no one would really listen to her story, and no one would take what she was saying seriously, and they just sort of brushed her off and said, “You’re fine, you’re fine”. But, she knew something was wrong. So, I think she actually started being quite adamant about looking into figuring out what it was that was wrong. 

So, she finally figured out she had MS. She has primary progressive MS, which is the worst kind you can have. So, I think there was some sense of relief in her knowing what it was that she had. Then, I think immediately thereafter, she started walking with a cane. Her left leg is the part of her body that is the most affected, or was at that time the most affected. So she started walking with a cane immediately, and then I sort of remember thinking—you know when someone doesn’t tell you that you have something, you kind of just tough up and say “Oh, I’m fine” and you keep going? And then the minute someone actually tells you what you have you succumb to it a lot? I remember that sort of being the case. 

It’s always just been my mom and I. She’s a single parent so I kind of feel that I’ve always been a caretaker in a way because we both looked after each other a lot. But then after, that she just sort of slowly progressed, and her leg got worse. She had bouts of vertigo, and I remember when I was 16, she probably had vertigo for two months because [she] couldn’t really get in and out of bed. I remember one time, our landlord in the apartment we were living at had to come upstairs and carry her down to the car so he could take her to the hospital. I was a teenager, so to be honest, I don’t remember a lot. I think I blocked a lot of it out, but I just remember knowing that I had to be there more.

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