Becoming a caregiver


Well, I met my husband 12 years ago. We went on a blind date. We had met on the internet and, at that time, I was living in [a city in BC]. He asked me out on a date, so I was going to go out for supper with him. He drove all the way to take me out, and he had never mentioned that he had Parkinson’s. He walked in my door with posies and he was going to give me a kiss, but I wouldn’t let him. I noticed there was something odd about him because his head was going like this. But I wasn’t afraid of him, and of course I knew a little bit of karate so I wasn’t too worried, and out we went.

We went for supper and I can remember sitting there dying to know what was wrong with him.  And when you’re small and your mother says, “Never ask somebody why they are missing that finger,” because it’s impolite… well, he was just such a nice person—I was having such a nice meal and he was such a nice person—I finally got up the guts to ask him, “Do you have Parkinson’s disease?” Why that ever came out of my mouth I’ll never know because I knew nothing about Parkinson’s. I guess it was just a lucky guess. Parkinson’s disease, 12 years ago to me, was just something that you heard that somebody had; like Alzheimer’s or whatever.

When I asked him if he had Parkinson’s he said, “Yes I do”. Well, I almost fell through the pavement. I thought, “Oh, now what do I?” because I know Parkinson’s is really bad.  So, I thought, “Now what do I do?”, and as we were walking across the parking lot to his car he says, “But don’t worry; it won’t kill me and you can’t catch it, and I’m going to live a long time, and I’ve had it since I’ve been 40.” And I knew then in my heart that he was the nicest person in the world that I would ever meet, and he was someone that I wanted to keep as a friend forever and ever. I knew then at that point.

Anyway he called me for three days, night and day, and he wanted me to come out and visit [a village in BC]. I thought, “Oh, all right,” so drove all the way out and I came up to this rustic log cabin and that’s where the magic started. I was visiting and he actually got quite ill, and so I stayed there and took care of him for a few days, still not knowing anything about Parkinson’s disease and what it does to you and no idea what I was getting into. Then, I got sick and he looked after me for a few days. Well to make a long story short, I just never went home, and after five months, we decided that I should give up my apartment in [a city in BC].

My cat and I officially moved in and I began my journey with Parkinson’s Disease […] It really didn’t dawn on me that I was going to be a caregiver at first, even though I did know that his condition was going to get worse. But after the first time he told me he had Parkinson’s in that parking lot, I’ve never seen Parkinson’s again; what I’ve seen was him, [my husband], not the disease. And to this day, I think that if he got well I probably wouldn’t like him as well. So, what I’m trying to say is I love him just the way he is, and some days I have to give myself a reality check because to me he’s not sick. To me, I see the person, not the disease.

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