Part of my letter to Mom.

Dementia Is Ruthless But It Can’t Take This From Mom

Dementia is ruthless. It’s brought an unwanted abundance of tears, raised voices, and outright fear. Most ruthless of all though in my experience as Mom’s caregiver, is the perpetual state of waiting for the other shoe to drop.

Mom’s having a good day? Dementia won’t let it last. Mom’s engaged in conversation? Not for long because dementia is here. When will we see the next milestone in her battle against dementia? When will Mom need more care?

Little devil

Those thoughts are always there, like a miniature devil permanently perched on my shoulder endlessly spewing his unhelpful thoughts. At first it was torturous, then it was scary, then finally I learned to manage him.

Much to my surprise, learning to manage the little devil turned out to be a welcomed and wonderful silver lining. I came to truly believe that life didn’t end when Mom’s dementia came on the scene. Maybe it’s not how we drew it up, but I now knew that life was not over. Different, yes. Over, no.

Equally as important, I learned how to live in the moment. Now this was hard and I’m definitely not a master, but in many ways it’s been a new lease on life for me. Living in the moment reconnected me with all the good — laughter, smiles, appreciation, gratitude, kindness — that there is in the world. It’s all still there. So what if dementia is around?

Roadtrip

On a recent road trip to bring Mom home from a visit to our house, Mom and I were having a blast. We were listening to my dad’s favorites — Huey Lewis and The News, Paul Simon, Billy Joel, and Steve Winwood — and singing along.

*Aside*

Dad’s other favorite musical artist was Anne Murray. Mom requested Anne Murray be played and after no deliberation I denied her request. I didn’t even feel bad about it. Is that wrong? Maybe. For the life of me, I can’t understand why he liked Anne Murray so much. When I see him on the other side, it’ll be one of the first questions I ask him.

*End Aside*

We were having a grand old time. If the little devil had his way, I wouldn’t have been enjoying it because I would have been bracing myself for the other shoe to drop. But I managed him and did enjoy every second while also fully expecting things to change on a dime. Big difference.

Dementia is ruthless

And things did change. After our sing along Mom got quiet, clearly lost in her thoughts. She wasn’t sleeping and the expression on her face told me whatever she was thinking about wasn’t good. Not wanting to press, I let things be…until I heard her sniffling and noticed her wiping tears from the corners of her eyes.

Me: What are you thinking about Mom?

Mom: The girls. (Her grandchildren)

Me: Ok. Want to talk about it?

Mom: This f-ing dementia is going to take them from me and me from them.

Dementia was showing the nastiest of its teeth here. For all the laughs and smiles that keep us going each day, this was dementia in full ruthless mode. I had no clever reply, nothing to say that would ease her sad realization. We sat in silence, holding hands now and watching the road signs whip by — for miles. My thoughts went to my conversation with Emma a while back. The girls are expressing fear that Mom’s going to forget them, and now Mom is rightly afraid and sad that dementia is taking the girls from her. Screw you dementia.

Breaking silence

After a few miles, I couldn’t take the silence anymore and pulled into a parking area on the side of the highway. I slipped the car into park, turned to my right so I was facing Mom and squeezed her hand a bit tighter — and said this.

You’re right Mom. I can see how you feel that way and can’t imagine how it must feel for you. But you need to know this:

Dementia is changing your relationship with them. It’s not taking them from you or you from them. You’ve left an indelible mark on your grandchildren. You are part of who they are. Always have been and always will be.

When they smile, I see you. In their laugh, I hear you. In their spirit, I feel you. They are your legacy. Dementia can’t take that. Now or ever. I’ll write it down to help you remember.

I didn’t feel my mouth moving as I was speaking. The words were coming from somewhere deeper. My heart, my rear-end, I don’t know, but it felt deep and heavy. When I finished, I realized how tightly I was gripping Mom’s hand — so I let go.

Back in the silence, between gulps of my water, I heard Mom say a soft “thank you”. The tears were gone and her expression was happy and warm.

Me: You’re welcome.

Mom: I thought you were going to break my hand.

All I could do was look at her, laugh, and give her a big car hug. We turned up the Steve Winwood and were on our way.

Dementia is ruthless. But it can’t take away Mom’s legacy.

Can you relate?

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

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Matt Perrin

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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