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 Cell Death
“You can’t see it, but inside my head there’s a quiet kind of storm. It’s not loud or painful — just steady and sneaky. My neurons, those tiny, hard-working brain cells that used to talk to each other all day long, are dying.
Here’s what’s supposed to happen:
Each neuron has a cell body that holds its energy center, called the nucleus.
Branches called dendrites reach out to collect messages, and a long axon carries the signal onward, like a telephone wire.
When everything’s healthy, neurons pass messages using little bursts of chemicals called neurotransmitters. It’s a perfect rhythm — zip, zap, connect, remember, move, feel.
But here’s the trouble with my dementia:
Something in my brain — maybe a buildup of toxic proteins, or a lack of oxygen, or a storm of inflammation — causes my neurons to break down.
First, the synapses (those tiny meeting spots between neurons) stop firing the way they should. It’s like a phone call full of static — “Hello? Hello? Can you hear me?”
Then, the cell body itself gets sick. The neuron can’t make enough energy or clear away its waste. Eventually, it withers and dies.
Once a neuron dies, it doesn’t grow back. The brain doesn’t replace it the way skin heals after a cut. The space just stays empty, and the messages that used to run through that path have to find another way — if they can.
So, parts of my brain that once worked like a well-lit city start to go dark, one neighborhood at a time. That’s why some days I can tell you all about my wedding day, and other days I can’t remember what a spoon is for. The messages just can’t travel anymore — the wires are down.
But please don’t think that I’m gone. I’m still here, somewhere among the flickering lights. I may take longer to find the words or to follow the conversation, but if you give me a little grace, some warmth, and time — I’ll still find my way back to you.”
What Caregivers Can Do to Help
- Slow the pace. My neurons need extra time to send their signals around the broken connections.
- Keep it simple. Use short sentences, one idea at a time. Too much input at once can overwhelm the fragile circuits.
- Engage multiple senses. Let me see, hear, smell, or touch things connected to what you’re saying. The more sensory routes you give my brain, the more likely one will get through.
- Speak with warmth. Tone carries emotion, and emotional memory lives deep — even when words fade.
- Encourage activity. Gentle movement, music, or conversation help surviving neurons stay connected longer.
- Don’t take my forgetfulness personally. When I forget a face or a name, it’s not rejection — it’s biology. The neurons that held that memory may simply be gone.
And when you look at me, try to remember: my brain may lose its light, but my heart still glows when you reach for my hand.”
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.
