“Be proud of what I can do”, the woman on the Zoom chat said. “Get rid of one piece of negativity today”. “Change my attitude. I am capable of it”. “The best part of learning is listening, and I don’t do that”.

That is something I want to remember. The best part of learning is listening.

It’s extremely difficult for me to detach from the anxiety, the fear and panic, the lethargy and apathy that encase all of my life in a hard shell. This is what is known as the neuropsychiatric behaviors and symptoms of Alzheimer’s. Some argue that this is supposed to come later in the disease.

I’m in my early sixties and suddenly I’m not the master of my own brain. I used to rely on my brain. Now I see myself do the odd things. This week I put the Pom juice in the cabinet with the glasses. I started to type my thoughts in a sentence and see that I am writing in the middle of another sentence. The connections in my brain are interrupted. The lights are flickering. The awareness is in and out. The disease progresses daily, weekly, monthly.  It marches its way through my brain like a Packman devouring what is in its path.

eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee

A man in his mid-fifties with the disease said to me, “don’t sweat the small stuff”. Being the drama queen I am, I do very much  sweat the small stuff. I worried and lamented  when I was normal, and I am doing it now in dementia. I wish I were so laid back as this fellow who wears pajamas all day and dances with the disease in his own way, advocating for the Alzheimer’s Assn. and being one of the public faces of the disease.

Another man my age with dementia had owned houses and worked as a top software salesman  He  lost his job, his houses- all of it and went bankrupt. He now has submitted his application to McDonalds. That’s a case of the cup half empty, or the cup half full. He can be proud of what he can still do.

We who have dementia sustain losses. Loss of pieces of ourselves.

The lovely woman, the famous food writer that I met online who is 16 years older than me and has a form of this disease. She said, “What are you gonna do, cry about it”? 

Edvard Munch, The Dance of Life, 1899