Uncle Lewy

Living out loud with Lewy Body Dementia

a very personal journey. Matt, CJ and Sheba….

This started spontaneously, part therapy, part keeping our peeps informed. I am finding my voice, evolving in this. The perspective is very much from my, CJ’s, perspective; the caregiving wife.

subscribe to follow…..comment to join us…..each eye that reads, is appreciated. This is a lonely making disease. Sharing moments is a bit of a sole suave.

Sully

No one on the medical team helps with this piece

What do you do when a 67 year old man affected by Uncle Lewy acts like a child?

Do you get to treat them like one?

If not…..then what?

This morning I embarked on the daunting post holiday Sunday am refrigerator clean up

Not just biology experiment removal, but full remove shelves, wash, purge….the whole thing

He comes in, starts messing around with all the parts and pieces I have all over the place

I ask him nicely, please don’t get in the middle of all this, I am cleaning the refridgerator

He backs away, comes back with a dirty sock, puts the dirty sock in the open bottom tray of the dishwasher

When you are in the fridge cleaning zone, all things are in play: dishwasher, compost pail, trash can, sink, heavy duty dish detergent

Makes no sense to open, close, put away, take out…..they stay on the field of play in ready position till the team is ready to walk off the field, say the job is done

I say, as nice as I can: your dirty sock does not go in the dishwasher, please pick it up and put it in your dirty closes hamper

He picks up the sock, walks away

3 minutes later he is touching, picking up the refridgerator shelving pieces

Please don’t touch that, please stay out of this till I am done, said a bit more firmly, clearly

Then he goes over to the dishwasher bottom drawer, starts to pull it completely out as if he is going to walk away with it

Please put that down, please stay out of this!

He puts it down , stands up right in my face, growls

Don’t growl at me, I said, you are the one acting like a child. I asked you 3 times nicely to stay out of the kitchen while I completed this project

He saunters back to bed, crawls in, I finish my project, put everything in its place, take out the compost and recycling again…..so that Sully wouldn’t get into it and make a new mess

The team is walking off the field, the fridge has been conquered

I go back to the bedroom after awhile, he is laying on the bed, thinking he may have cooled down a bit

What would you like for breakfast?

”Your face”

I guess it’s gonna take a bit longer for the cool down this time, I cover him up a bit better with the blankets, close the door, exit the bedroom

No one teaches you how to handle these monster moments

There is only so much you can take of this before you look at the 67 year old body of a man and not expect it to act like one

There are only so many times you can let them run over you, make your task harder

My little, well big, monster

Gentle as a teddy bear most of the time

But a big clumsy total pain in the ass sometimes

I am nicknaming him Sully, for the big blue monster with green polka dots from Monsters Inc.

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