Parkinson’s and Denial

Sunset Dreams

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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4 thoughts on “Parkinson’s and Denial”

  1. Good luck on your blog! The combination of parkinson’s and paintings is an interesting mix. I look forward to reading about your Parkinson journey with your mom. My husband and I went through it with his father. Looks like your off to a beautiful start with that painting.

    1. Thanks, Nancy! It’s been a difficult journey so far, that’s for sure. There’s nothing the medical community can do for her at this point so it’s pretty much my dad and I doing what we can.

      1. I’ve read listening and dancing to music helps the movement a bit. My father-in-law was an opera lover, not much for dancing, but if your mom like the great standards, there’s plenty to dance to. You should check out the blog,
        She mainly works with dementia, but she may also dance with Parkinson’s patients. She always has great music to share on her blog and positive experiences.

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