Every day I hurt.

Long goodbye takes its toll.

Lucky to have family help settle the weight,

and fill my soul.

I hurt.

But I’m content.

I’m scared and know why,

but their smiles make me fly.

Memories with Mom too.

Details don’t matter.

Not words either.

One way or another,

she says ‘I know you’.

Still, it all takes its toll.

Each day shows more of the hole.

It’s coming.

It’s here.

I’m spent.

I hurt.

But I’m content.

Kept going,

is where I went.

To get through.

Dementia is…

Evil

Cruel

Unfair

Wicked

Ruthless

Merciless

Unrelenting

Wrecking ball

These are the words that would rush out of my mouth if I were ever somehow locked in a dark room, strapped to a chair and forced to play dementia word association. …

I am surrounded by dementia. I loathe it with a silent hostility so consuming and unfamiliar that at times I barely recognize myself — yet I feel thankful for the life lessons that have come with the cruelty. It’s all very confusing.

Origins and implications

My hatred is of simple…

Mother and son
Mom and I, long before Alzheimer’s and the question that eats me up.

The caregiving gift I want but know I can never have is certainty. I’ve learned to live with it for the most part, with the exception of one question. One lingering, at times haunting, question.

See, my dementia caregiving days are full of questions with no certain answers. Only assumptions…

Matt Perrin

Surrounded by Alzheimer’s and Lewy Body Dementia. Founder of Ro & Steve. Working my way through life and dementia caregiving.

Get the Medium app

A button that says 'Download on the App Store', and if clicked it will lead you to the iOS App store
A button that says 'Get it on, Google Play', and if clicked it will lead you to the Google Play store