Living with Dementia: The Feeling of Fading Away

There’s a feeling I can’t quite describe—like I’m slowly fading out of focus. It’s not just about the memories that come and go or the words that get tangled in my mind. It’s about the way the world seems to shift around me, making decisions I didn’t agree to, speaking on my behalf, and steering me down paths I never chose. Living with dementia feels like being placed on the sidelines of my own life, where my voice grows softer and my choices seem to matter less and less.

When my diagnosis first came, it felt like a punch to the gut. Not because I didn’t know something was wrong, but because of what it meant: an invisible line had been drawn between the “me” of now and the “me” I used to be. Almost immediately, I could sense the shift in how others treated me. At first, it was subtle, just a little more caution in their tone or a slight hesitation before answering my questions. But as time passed, that subtlety sometimes faded, replaced by a kind of well-meaning overprotectiveness that only made me feel smaller.

It’s not that I don’t appreciate the help. I know my family and friends care deeply, and they want to make things easier for me. But there are times when I feel like I’m being watched more than listened to, managed more than understood. Decisions about my daily life—what I eat, when I go out, even what I wear—are sometimes made without me. It’s as though my diagnosis stripped away my right to decide for myself, leaving me with a sense of helplessness that’s far worse than forgetting a name or misplacing my keys.

The worst part, though, is how people talk around me rather than to me. Conversations about my health, future, and preferences often happen without me in the room or with someone speaking on my behalf. I hear things like, “Pete prefers this,” or “Pete doesn’t want that,” as if I’m not sitting there, capable of expressing my thoughts. There’s this constant assumption that because my memory isn’t as sharp, my opinions must be dull, too. It’s incredibly frustrating. I still have thoughts and feelings. I still want to be included in the conversations about my life.

And then there are the social situations. I’ve noticed that people jump in to finish my sentences when I struggle to find the right word or pause for too long. I know they’re trying to help, but every time it happens, it feels like a little piece of my voice is taken away. I want to say, “Just give me a moment; I’ll get there,” but sometimes, by the time I’ve found the words, the conversation has already moved on, leaving me behind. It’s like I’m drifting further from the centre of my own story.

The environment itself can be disempowering, too. I worry that one day, my home, which is my sanctuary, filled with little routines and familiar comforts, will have “changes” made for “safety” - things moved out of reach, new locks added, alarms set on the doors. It’s like my house may be slowly taken over, transformed into a place that feels less and less like mine. I understand why these changes may need to be made, but each one will remind me of what I’m losing. My independence, my space, my ability to navigate life on my own terms.

The truth is, I don’t want to be treated as fragile. Yes, I need some extra support, and yes, my mind doesn’t always cooperate as it used to, but I’m still here. I still have moments of clarity, days when I feel like myself, and I still have much to say. I want to be included in decisions about my life, even if I struggle to process everything. I want people to ask for my opinion and listen, to speak directly to me rather than about me as if I’m not present. I need to feel like I’m still a part of the world, not just existing in the background.

Empowerment isn’t about pretending I don’t have limitations; it’s about acknowledging that I still have strengths, that I still have the right to make choices about my life, and that I’m not defined solely by my diagnosis. I need the people around me to recognize that living with dementia is not the same as living without a voice. It may take me longer to express what I want, and sometimes, I may not remember what I decided the day before, but I still deserve to be part of the process.

To those caring for someone with dementia, I’d ask you to be patient. Let us take our time to find the words. Ask us what we think, even if it’s just about what we’d like for dinner or whether we feel like taking a walk. Include us in conversations about our health, care, and routines. Small moments of empowerment can make all the difference. It helps us hold on to who we are, even as some parts of us slip away.

Dementia may change the way I interact with the world, but it doesn’t erase my right to be heard. It’s not just about preserving my memories—it’s about maintaining my dignity, autonomy, and place in this life. And that, I hope, is something we can all agree is worth fighting for.

If you’ve had a similar experience, I’d love to hear your thoughts. Let’s keep this conversation going because our voices matter—even when they falter.