Mom and me long before dementia became part of our story.

Can There Be Beauty In Dementia?

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Quiet and cruel

The wars they wage are cruel and unrelenting. I’m not living with dementia so I don’t know for sure, but I see Mom each day and cannot imagine her terror in knowing that Alzheimer’s is taking her mind away from her-bit by bit.. The thought of how she must feel makes me shudder.

I’ll fix it

When I became a caregiver, my first instinct was to fix. It was a losing (and nearly debilitating) proposition. Instead of being genuinely present with Mom, I was preoccupied by thinking of ways to fix. Rather than being patient, I was short-tempered out of frustration. While I should have been seeking to understand, I was seeking to solve. It was a subtle mistake with gigantic consequences. It left me depressed, overwhelmed, and numb. More importantly, it left Mom without the support she really needed.

Beauty in dementia

My relationship with Mom is deeper now than I could have ever imagined. Our parent-child relationship is inverted, yes. It’s not how I wanted it to be and I wish the circumstances were entirely different, but I struggle to imagine how we could be any closer. Comforting Mom when she’s sad, helping her work through a specific challenge, assisting her in communicating, advocating for her out in the world-it’s hard to describe how it all makes me feel other than to say it makes me feel closer than we’ve ever been. And there’s beauty in that.

Inspiration

Having a front row seat to the display of courage and determination Mom puts on each day-just going about her business-is inspiring. I can’t comprehend how Mom feels knowing what’s happening with her brain. If it were me, I’d be terrified. I expect Mom is yet she gets out of bed each day and tries her best to enjoy the day. Mom is my inspiration-and there’s beauty in that.

The good days

When Mom has good days, all the feels come in. Seeing her sharp, hearing her laugh, seeing her smile and engaged-to someone not living with dementia, these are trivial things that wouldn’t be noticed. But for Mom, they’re huge and without my balance, I wouldn’t have noticed. My balance lets me see them for what they are, hard fought and well deserved small victories. And thanks to balance, I’ve learned to enjoy them with her. To relish them because even as fleeting as they are, they epitomize beauty.

Perspective

As much as I despise Mom’s dementia, I appreciate the perspective it’s given me. The journey of supporting Mom has given me a new perspective on-life, the world, people-everything. It’s made me more thoughtful, patient, appreciative, kind, determined, and inspired. If dementia hadn’t entered our life, perhaps I would have gotten this new perspective in other ways. But my reality is dementia gave it to me and it’s beautiful. I’ll keep this perspective and build on it forever.

Surrounded by Alzheimer’s and Lewy Body Dementia. Founder of Ro & Steve. Working my way through life and dementia caregiving.