Every Journey Begins with a Single Hop
This is my Mother.
This is also my Mother after year’s of dealing with Parkinson’s.
The mother I used to know once dragged me through the Smoky Mountains, refusing to turn back even though she knew we were lost. The mother I grew to know dragged me through the smoky remnants of her Parkinson’s ravaged mind, refusing to give up even though I knew we would lose.
Parkinson’s is Especially Cruel to the Sporty Types
My mother was athletic before being athletic was cool. Back in the day, in the
When she was 18 she met a boy who loved to ski. She didn’t have the nerve to tell him she didn’t know how. So, one warm sunny day in May, she ended up following along on a ski trip to Mt. Washington, New Hampshire. She was all decked out with her brand new skis, black and white striped capris (think Mary Tyler Moore pants) and matching jacket. After hiking and sweating for 2-miles up the side of the mountain, her friends took off down Tuckerman’s Ravine leaving her to follow.
And Then it Got Interesting
She did great the first few hundred feet or so, then it was face-plant and roll for the next thousand. She remembered distinctly the sound of the skis smacking her on every roll. When she finally stopped she laid there in the snow for a few minutes wondering if she was dead. She turned her head and noticed a plaque on the rock next to her commemorating the life of a young man who died on that spot. Mom finally got up, realized she’d sprained her ankle, lost a ski and the most tragic of all, ripped her brand new capris. (She showed me the capris when I was in High School, still ripped). Mom had to hike herself out the last half mile to the lodge, limping and cursing the whole way. She dumped the boyfriend, gave up skiing and stuck with hiking after that.
She was a feisty girl from South Boston that never met a challenge she couldn’t win.
At least that was until she found out she had Parkinson’s Disease. Both her Father and Aunt had died from the complications of Parkinson’s so she knew from the beginning what was ahead of her.
Parkinson’s Dementia Sneaks Up on You Like a Frog in Hot Water
Having a family member with a progressive neurological disease is like the story of throwing a frog in hot water. Of course, he’d jump right out. But let the water warm gradually and he’ll never notice until it’s too late.
If I’d encountered my Mother the way she was at the end, I would’ve run screaming out the door and not stopped until I hit the Bahamas. Oh wait, I did do that. But I came back, didn’t I? Sometimes the only way to escape was to actually leave the state, if not the country.
That is the insidiousness of Parkinson’s Disease and the Dementia that follows. It’s a slow progression. You’re so focused on just surviving day after day you don’t realize how far down the rabbit hole you’ve gone.
It’s the Hope that Kills You
And then we’d have a good day and I’d think maybe I was wrong, this isn’t so bad. Yeah, right. But it was those good days that kept me going. In spite of everything, I knew she was still in there and every once in a while she’d come back out. I could put up with anything just for the glimpse of who she used to be.
I knew it was bad when I called my sister once and instead of “hello”, I got a “what’s wrong with her now?”. She said she started to hate seeing my name on the Caller ID. When I asked why she said I only called if Mom was driving me crazy. I became more aware of that and tried to call more casually. (That way I could sneak in the bad calls and catch her unawares!)
Having been there from the beginning, each stage of the disease would freak us out but then we’d adapt and it became the new normal.
Even the craziest life can feel normal after a while. So, be like the frog slowly simmering in the pot of water. Make it into a hot tub instead and enjoy the time you have.