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.
What Happens Next
“Well, now we know.
The word dementia has been spoken out loud, and there’s no putting it back in the box.
I won’t lie — the first few days after hearing it were like walking through fog. Every thought echoed: What does this mean? How long do I have? What will I lose first?
But after a while, I realized something: knowing the name of what’s happening to me doesn’t take away my life — it gives me a chance to live it on purpose.
Step One: Taking a Deep Breath
I can’t control what’s happening inside my brain, but I can control how I respond to it.
So here’s what I decided:
- I’ll take one day at a time.
- I’ll ask for help before I collapse.
- I’ll make space for joy, even in small doses.
My caregiver and I had a long talk. We cried. Then we made a list — not of losses, but of things that still matter: favorite foods, favorite people, favorite routines.
Because while dementia changes the wiring, it doesn’t erase what makes life mine.
Step Two: Building a New Rhythm
I’ve learned that my brain now runs on a different clock. It likes calm, order, and repetition.
So we started creating anchors in my day —
- Coffee in the same mug each morning.
- Music playing during breakfast.
- The same route for walks.
- One task at a time, no juggling.
Predictability keeps my neurons from spinning in circles. It’s not boring — it’s peace.
Step Three: Medications, Checkups, and “Team Brain”
Once the diagnosis lands, the doctors get busy — memory medications, sleep aids, checkups, referrals.
But I learned something important: the medical team isn’t the whole team. My real brain care team includes my caregiver, my family, my friends, and even my favorite nurse who remembers my cat’s name.
They help me stay hydrated, rested, and safe — and they remind me who I am when I forget.
Step Four: Learning About My Brain
At first, I didn’t want to know the details. But then I realized — understanding what’s happening inside me helps me stop blaming myself.
It’s not my fault that I can’t remember, plan, or finish a sentence sometimes. It’s the neurons. They’re the ones losing signal, not me losing willpower.
So now, I’m learning about my brain — how it shrinks, what it retains, how love still gets through. It’s oddly comforting, knowing which bridges are broken and which ones are still strong.
Step Five: Holding On to Love and Identity
Here’s the part that surprises people: dementia doesn’t take away who I am overnight. It just scatters the puzzle pieces.
Some days I can put them together clearly; other days, I hold only one or two.
But even if my memories fade, my feelings remain.
I still know comfort.
I still know kindness.
I still know love — by the way it feels, even if I can’t name it.
A Word to My Caregiver
You’re scared too, I know. You’re already Googling and planning and trying to be brave. But please, don’t forget to breathe. You can’t hold both of us up all the time.
Let’s walk this together — side by side, not one dragging the other.
Let’s plan, yes, but also laugh. Let’s make memories while I still can hold them, and photos for when I can’t.
Because this journey isn’t about losing everything — it’s about holding on to what matters most, while we still can.
“The diagnosis isn’t the end — it’s the invitation to begin again, slower, softer, together.”
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.
