Mom spent 40 years working as a nurse and picking up side caregiving jobs to pay for the extras (me). When Alzheimer’s Disease tightened its grip to the point Mom could no longer live on her own, I couldn’t help.

My Father-in-Law had just moved in with us, his Lewy Body Dementia had already done to him what ALZ was doing to Mom. And with three elementary school aged kids, there was no room at the inn. There wasn’t even any more room we could make.

Assisted Living was our only and best choice given Mom’s care and quality of…

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…








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. You could pick any bleak adjective or metaphorically fitting noun you’d like and it’d work just fine.

There have been bits of beauty and happiness on this journey with Mom too. Moments like this or this, and hopefully many more to come. …

Filed Under: Uncategorized

Medication management in Alzheimer’s care is the ultimate trial and error exercise.

There is no cure. The name of the game is slowing disease progression and managing symptoms. Prescriptions are written based on hypotheses and degrees of certainty, not on absolutes. There are none of those symptoms change over time.

In addition to worry and consternation, each change in Mom’s symptoms or behavior brings lots of discussion about how best to manage through it. And at least part of those discussions, on our journey anyway, tends medication related.

So medication management in my caregiving life feels like…

Filed Under: Uncategorized

Mom and I spoke a couple of times last Wednesday as we normally do. The morning was a brief hello while the evening was a bit longer. 14 minutes and 37 seconds to be exact and the conversation was a perfect microcosm of the gut-wrenching emotional and sensory roller-coaster that is my Alzheimer’s caregiving life.

It started like all of our other conversations. The phone rang and Mom eventually picked it up.

Me: How are you doing today?

Mom: Oh, I’m ok. Doing ok today. Better than I was yesterday I think…*sighs*

Me: Ok, well that’s good…

Filed Under: Uncategorized

There it was on the bottom of the second page in the stapled stack of photo copies I’d just been given, in big bold font: Social Isolation. The bold type-face was followed by a generic definition, a description of the dangers and references to helpful resources for new caregivers to tap into.

We’d just wrapped up the doctor’s appointment in which Mom was formally diagnosed with Alzheimer’s Disease. The doctor left the room, the nurse collected Mom and I sat shell-shocked.

Just me, the white walls, headache inducing bright fluorescent lights and the black and white and…

Mom on her memory care patio on our first visit after Coronavirus restrictions were lifted.

Under the cover of the quarantine, I moved Mom to memory care. And I loathe myself for it.

In spite of my boundless regret, I know I did it for the right reasons. It’s the best option for Mom. Courtesy of Alzheimer’s Disease, the (wonderful) support provided in standard assisted living was no longer enough for her.

Moving her in with us wasn’t an option because between and the kids, we don’t have the space. Even if we did, I don’t believe we could give Mom and her Alzheimer’s Steve and his Lewy Body the care and support they deserve.

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 origin. Mom and Steve don’t deserve Lewy Body and Alzheimer’s. They should be enjoying life not tiny bits and pieces of it when they can.

Like anyone else, they worked hard to build their respective lives. They raised and supported families. Saved for their twilight the best they could. Became…

What is hospice?

If I were asked this question three months ago, my answer would have been one word.


Because until recently, all I knew about hospice was that it was associated with the end of someone’s life. And death has scared me for as long as I can remember.

My first experience with it came with a force so sudden and final when my father passed away that there are days that I still struggle with it thirty years later. He died on a Sunday and still no matter how bright the sun shines or how comfortable I…

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, probabilities and best guesses. Caring for Mom and helping her live her best life is an eternal exercise of trial and error.

Straight questions and circular answers

This is because while Mom is still verbal (very thankful for that), it is nearly impossible to get straight answers to even the most basic questions, thanks to…

Matt Perrin

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

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