Welcome to the SeriesWelcome to the Me with Dementia Talking About… weekly series.
Each Wednesday, I share an excerpt from my book—Me With Dementia Talking About—where I share reflections from the perspective of someone living with dementia. These gentle reflections are designed to help caregivers, family members, friends, and healthcare professionals better understand what dementia may feel like from the inside.
Whether you’re joining us for the first time or have been following along from the beginning, I’m glad you’re here.
Brain Atrophy
“Well, I suppose you could say my brain has been shrinking — but not in a way I can feel. It’s not like a headache or a bruise. It’s more like an old garden losing its paths. The flowers are still there somewhere, but the roots have tangled, and the trails between them are fading.
Here’s what’s supposed to happen:
In a healthy brain, neurons — the tiny messengers — stay plump, connected, and full of energy. They reach out to each other through synapses, passing messages from one area of the brain to another, kind of like a busy city full of talking lights and signals.
The frontal lobes handle thinking, planning, and personality. The temporal lobes help with memory and recognizing voices or faces. The parietal lobes guide movement and awareness of space. And the hippocampus is the librarian that keeps all my memories in order.
But here’s the trouble with my dementia:
Those neurons are slowly dying off. As they die, the spaces between them widen, and the brain tissue itself starts to shrink — that’s what doctors call atrophy.
When neurons in my frontal lobe die, I lose my filters. I might say something rude or act in ways that don’t seem like “me.”
When the hippocampus shrinks, memories slip away. I can’t always remember what I had for breakfast or even recognize the person sitting beside me who loves me so much.
When neurons in my parietal lobe are lost, I might bump into things or think a fork is a pen. My sense of space and coordination gets mixed up.
Even my occipital lobe — the part that helps me see — can struggle to interpret what my eyes take in.
It’s not that I’m not trying. It’s that the roads in my brain — those lovely neuron highways — are filled with potholes and detours now. The messages still try to travel, but they get lost, stuck, or go in circles.
So when I pause, forget, or seem confused, it’s not laziness. It’s brain atrophy. Parts of me are literally fading away. But there are still plenty of neurons trying their best. They just need a little more time, and a lot of patience, to find each other.”
What Caregivers Can Do to Help
- Speak slowly and clearly. Give my neurons time to catch the message. Silence is not your enemy — it’s space for my brain to catch up.
- Use gentle repetition. Don’t be afraid to repeat yourself; you’re helping my remaining neurons strengthen their connections.
Keep routines simple and steady. Familiarity gives my brain fewer puzzles to solve and more comfort to feel. - Offer reassurance, not correction. If I get something wrong, kindly redirect me instead of arguing — my neurons can’t always take a detour and come back easily.
- Encourage movement and social connection. Light exercise, music, and laughter help the surviving neurons stay active and build alternate routes.
Remember: I may not remember your words tomorrow, but I will remember how you made me feel. Every moment of calm, kindness, or shared laughter strengthens what’s left of my brain’s garden.
Continue the Journey
Thank you for reading this week’s chapter from Me with Dementia Talking About…
This series follows the book in order, one chapter each week, making it easy to read from beginning to end.
