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.
Getting a Diagnosis
“I’ll be honest — I didn’t want to go.
I didn’t want tests, or questions, or anyone poking around in my memories like they were drawers to be sorted. I already knew something was wrong. I didn’t need a label to make it official.
But eventually, the forgetting became too big to laugh off. Too many misplaced words, too many mixed-up days, too many moments where I saw worry flicker across someone’s face and knew — they noticed.
So off we went, me and my caregiver, into the world of appointments, specialists, and waiting rooms with the faint smell of sanitizer and uncertainty.”
The Doctor’s Office Maze
They asked me to remember words — apple, penny, table — and repeat them later.
They asked me to draw a clock, count backward, name pictures, tap my fingers.
And all the while, my brain was juggling panic and pride.
Some questions I nailed. Others slipped through my fingers like wet soap.
When I got something wrong, I laughed — the polite, practiced laugh people use when they’re covering fear.
Then came the scans — bright whirring machines looking inside my head, measuring what’s shrinking, what’s quiet, what’s changed. They call it atrophy.
I call it proof that I’m not just “being forgetful.” Something real is happening in there.
The Emotional Earthquake
Getting a diagnosis feels like being handed two things at once:
- A flashlight — because now you can name what’s happening.
- A storm — because now you know it’s not going away.
I felt relief, fear, shame, and peace — sometimes all in the same hour.
Relief that I wasn’t imagining it.
Fear of what’s coming next.
Shame that people might treat me differently.
Peace that at least I could stop pretending everything was fine.
It’s a strange kind of grief — mourning pieces of yourself while you’re still here.
What I Wish My Doctor Knew
Don’t talk around me — talk to me.
Use words I can understand.
Let my caregiver help fill in the blanks without making me feel invisible.
Remember that I’m still a person, not just a patient.
And please — don’t rush through the part where I’m scared. I can handle the truth if it’s told with kindness.
What I Wish My Caregiver Knew
When I argue, it’s not because I don’t trust you. It’s because hearing the word “dementia” feels like the floor just gave out from under me.
Let me have my moment. Let me grieve. Then help me find my footing again.
You might feel relief that we finally have answers — and I’m glad you do — but please remember, this is my whole identity shifting.
I’m not just losing memories. I’m losing pieces of me.
The Light After the Label
Once the word “dementia” settles in, there’s still life to be lived. Beautiful, funny, messy, ordinary life.
The diagnosis doesn’t erase who I am — it just rewrites the map.
I can still laugh. Still love. Still find joy in a familiar song, a good cookie, or the warmth of your hand in mine.
Knowing what’s happening gives us a chance to plan — to build a care team, get the paperwork done, and create moments worth remembering while I still can.
Because the truth is, I’m not done yet.
I’m still here — still me — even if my neurons need a little extra time to find the words.”
“A diagnosis isn’t the end of the story — it’s just the page where you start reading together instead of apart.”
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.
