Me With Dementia Talking About…
Everything You See and Don’t Understand
by Deb Jeffrey
What if the person with dementia could tell you what was happening? Me With Dementia Talking About… gives a voice to the behaviors, changes and confusing moments caregivers see every day—drawing from real conversations, experience and observation to explore what the person living with dementia may be feeling, thinking or trying to say.
What Is Me With Dementia Talking About…?
When someone you love has dementia, you can find yourself asking the same questions over and over:
Why is he doing that?
Why does she keep asking me the same thing?
Why is he suddenly angry?
Why can’t she see what’s right in front of her?
Why does something that seems so simple to me feel impossible to him?
Me With Dementia Talking About… grew out of those questions—and out of years of asking another kind of question:
What are you really feeling? Thinking? Trying to say?
Some of the answers came from conversations with people I love who were living with dementia—my husband, my mom, and, years ago, my grandmother. I asked questions. I listened. I watched. And sometimes their words gave me a glimpse into an experience that looked very different from the outside than it felt on the inside.
Other times, there wasn’t an answer. So I began trying to look beyond the behavior and imagine what might be happening underneath it.
The result is a collection of short, relatable reflections written in the voice of “Me”—the person living with dementia. Some are rooted in things that were actually said or shared with me. Others are informed by experience, observation and what we know about how dementia can affect the brain.
It isn’t meant to speak for every person with dementia. Every person, every brain and every experience is different. Instead, the book invites caregivers to pause before reacting to a behavior and wonder:
What might this look like from the other side?
Because sometimes understanding the possible why behind what we see can change the way we respond.
A Peek Inside Me With Dementia Talking About…
The book is made up of short, easy-to-read reflections about the things dementia caregivers see, hear and experience every day. Each one invites you to look at a familiar situation from the other side.
“Me” with Dementia, Talking About Why It’s Called a Brain Disease
“You might hear people say, ‘Oh, she has memory problems,’ or ‘He’s just getting forgetful.’ But what’s happening to me isn’t just forgetfulness — it’s a brain disease.
Here’s why:
My brain isn’t just a lump of gray mush sitting behind my eyes. It’s an entire city, full of neighborhoods that each have their own jobs.
- The frontal lobe helps me plan, make decisions, and behave politely in public.
“Me” with Dementia Talking About Bathing
You might think a bath or shower would be simple — even pleasant. But for me, it can feel like stepping into chaos.
Sometimes, I can’t tell what you’re about to do.
The water looks strange. The sounds echo. The floor feels slippery, cold, or too bright. I see reflections and movement in the water that don’t make sense.
When I’m undressed, I feel exposed — vulnerable in a way that’s hard to explain.
You’re trying to help, but my brain doesn’t register that you’re safe. It just senses that something unfamiliar is happening to my body.
“Me” with Dementia, Talking About Wanting to Go Home
Sometimes I tell you I want to go home. You look puzzled, because we are home. You point to the familiar chair, the family photos, the kitchen I’ve cooked in for years. But to me, it doesn’t feel right.
Something inside says I’m in the wrong place — like the world around me is tilted just enough to make me uneasy.
I don’t mean to upset you. When I say “home,” I don’t always mean an address. I mean safety. I mean belonging. I mean the feeling of knowing where I am, and who I am, and that everything will be okay.
Who Is This Book For?
Me With Dementia Talking About… is for anyone who loves, lives with, or cares for someone whose brain is changing.
Whether you’re caring for someone living with Alzheimer’s disease, Lewy body dementia, vascular dementia, frontotemporal dementia, or another form of dementia, you may recognize many of these moments.
It’s especially for the caregiver who has found themselves thinking:
Why are they doing this?
Why isn’t explaining it helping?
Why does this keep happening?
What am I missing?
You can read this book from beginning to end — or open it when something happens that you don’t understand. Look for the topic that’s giving you trouble. Read what “Me” has to say.
Sometimes a different perspective is enough to help us respond with a little more understanding—and perhaps a little less frustration.
About Deb Jeffrey
Deb Jeffrey is a writer, illustrator and dementia caregiver—and the creator of Living With Lewy, where she shares hope, help and humor from inside the often unpredictable world of dementia caregiving.
Me With Dementia Talking About… grew from something Deb has done for years: ask questions, listen and pay attention. Some of the insights in the book began in conversations with people she loves who were living with dementia—her grandmother, her mother and, now, her husband. Others grew from the everyday moments that left her wondering, What is really happening here? What might this feel like from the other side?
Through her writing, Deb hopes to help caregivers see beyond the behavior to the person who is still there—and to remind them that sometimes a little understanding can change an entire moment.
Ready to Hear What “Me” Has to Say?
Me With Dementia Talking About… invites you to look beyond the behavior and consider what the person you love may be feeling, thinking or trying to say.
Available in paperback and Kindle on Amazon.