Parkinson’s and Dementia

Every Journey Begins with a Single Hop

Mom Before Parkinson's and Dementia

This is my Mother.

Mom after Parkinson's and Dementia

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 1950s, girls were called tomboys if they preferred sports to dolls. At her top height of 4 foot 11 (she always said she was 5 feet tall, Grandma said that was a load of crap) she always felt she had to play twice as hard to be thought of as half as good.

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.

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Parkinson’s and Denial

It’s Not Just a River in Egypt

In 2015, I left my job to help care for my mother who had Parkinson’s disease and severe dementia. Years of being in denial about her condition took a heavy toll on everyone who loved her.  She passed two years ago tomorrow and I can finally write about our time together without crying. (Probably.)

The Real Smoky Mountain Diva

So, for now, my blog will have two themes as eclectic as my life. Parkinson’s Disease and Crafting. I won’t be writing in chronological order. Basically, it’s whatever memory bubble pops to the surface.  I will try to list them on the page in order though. (Think Star Wars order, without the Jar Jar Binks)

This is the Real Smoky Mountain Diva at Dollywood Amusement Park in Pigeon Forge, Tennessee.  

Denial was not just a river in Egypt

Meet my mother, Betty.  She was diagnosed almost twenty years ago with Parkinson’s Disease, the same disease that afflicted both her Father and Aunt. At first, her Parkinson’s had been considered little more than a nuisance than a consideration. So we slow down a little, try different medications, to no avail, and just keep plugging along.

Fast forward a decade and a half. Is the house handicap accessible? No, other than the ramp leading into the house. Does she have a hospital bed or any kind of bed that would help her get up and down? Nope again. She just used lots of pillows that must be propped into position every few minutes. Can she enter her bathroom? Negatory, her walker wouldn’t fit through the door so she used the port-a-potty in the corner of her bedroom.

Is There a Zip Code for Your State of Denial?

She would freak out every time one of these options was mentioned. “I don’t want anyone tearing up the house”, she’d say.  “Hospital beds are too high and uncomfortable.”, she’d complain.  (Okay, she may have been right about this one as she was four foot nothing.)

My father did his best but he wasn’t young anymore either and none too strong. That’s why I left my job in order to help him out more.  So I figured once I was able to be there more often, I could enforce encourage a few changes. The trick was to make her think it was her idea. (It was a ploy that had worked well for decades as far as I was concerned.)

For example, she liked to sit on the edge of her bed and watch TV. Well, she’d rather lay and watch TV but she couldn’t always get back up and that freaked her out. So she would sit on the edge with pillows propped around her to keep her up. (It worked for a few minutes, but then she’d start to list to the left, or right, or on her back like a turtle). She mentioned once that she wished she had something to hold onto to keep her up other than her walker (which had wheels and tended to roll away on her). 

Quick, Before She Changes Her Mind

I jumped on the comment and suggested we Google some ideas. Safety Bed Rails? Nope, too confining. Security pole? Closer, but looks an awful lot like a stripper pole with a handle and it was way too intrusive she thought.

And then we saw the Bed Assist Rails that slide under the mattress. She could pull herself up when she’s lying down or hold herself up when she’s sitting. Bingo. Finally, an actual item that she could use to make her life more comfortable and convenient. (For us more than her, really.)

She loved it and used it often after it was installed.   Her only complaint was that I waited so long to get it for her. 

My mother and I created this abstract painting, Sunset Dreams. I wanted to prove to her that she could paint.  And she did.

You can have Parkinson's and still be Crafty


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