when people treat me like…

So…my family refusing to talk about me maybe having memory loss and/or dementia, until a doctor says it’s a real thing, feels a little bit like…

…they think I’m not a reliable witness to what’s happening in my own brain…

…sorta like, maybe I have dementia…

…boom…

jane

creepy selfie #2

selfie_no_2

“we will not be ignored”
watercolor & pastel on paper

I’m going to have to find a way to represent brain confusion that doesn’t depend on a distorted face.

Or not.

I plan to take this train wherever it leads me…so who knows. My paintings might get even creepier. I think the paintings give BF the heebie jeebies.

Today for the first time, I googled “young onset dementia,” and I am finally finding accounts written BY people with dementia, rather ABOUT people with dementia. The site https://www.youngdementiauk.org/ is my object of fascination today.

if not me, then who – am i

selfie-021917

if not me, then who – am i

I can’t find much content aimed at people with early dementia. Most everything is for the poor souls who love people like me.

I am desperate to find other people like me. I want to know:

  • how it feels inside their heads
  • how it feels in their lives
  • tricks they’ve learned for living with a failing brain
  • what they’re afraid of, but don’t want to tell their loved ones
  • how to manage a medical system that is beyond my grasp
  • how to stay as independent as possible for as long as possible

I’ve found a few tips. Eat right, exercise, don’t drink too much. Essentially, advice you would give to any person with any condition. Be careful walking.

It seems like Google is reluctant to say the word “dementia” around me. Like the internet doesn’t want to admit I have a problem, until I’m so far gone that only other people can speak for me.

Please, if you know of any sources created BY PEOPLE WITH DEMENTIA, please let me know down below in the REPLY box. It’s lonely out here.

In the meantime, my new creative assignment to my self is to show what it feels like to be me. Above is my first, created today, but really, sometime in the middle of last night (pastel, watercolor pastel, and watercolor paint on paper).