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How can there be beauty in dementia? Those two words don’t belong in the same sentence. Alzheimer’s disease, vascular dementia, Lewy body dementia, frontotemporal dementia-they’re all uniquely ugly conditions. Each one wages a dastardly war on the person living with the disease and all who love and care for them.
Only limited courses of treatment are available and there are miles upon miles to go on research for future treatments. With any type of dementia diagnosis, life suddenly (or not-so-suddenly) seems bleak-on the surface and beyond.
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.
Ro was a widow and single mother raising me and working for decades as a nurse. She should be spending her seventies doing things she loves and ringing every last drop of joy and fulfillment out of her retired years. This is supposed to be her time. But it isn’t.
Instead, she spends her days being cued from activity to activity, watching TV, and practicing reading. She fights every day to live her best, most fulfilled life-it’s just that the expectations of what that means are different now with dementia.
For caregivers, it’s a different kind of war. Every bit as ugly and trying, just in a different way. It’s a war of attrition fought on multiple fronts-emotional, physical, financial-with each one as wicked as the next. There’s simply no way to prepare for watching someone you love be slowly but mercilessly taken from you-and themselves. And the ripple effect of caregiving into all other parts of life is often staggering. For us it certainly has been. The weight and sadness of it all can swallow us up if we’re not careful.
So how can there be beauty in that? How can there be beauty in dementia? For us, the answer came (by accident) from wrestling with these questions:
How do I help Mom live her best life in spite of it?
How do I live with it?
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.
Things changed when I came to (truly) understand that fixing the situation wasn’t an option. When I accepted Mom’s dementia and the hideous war it was waging on her as part of our story, it unexpectedly cleared my mind. It gave me room to breathe and to feel.
Sure, I still get frustrated and angry and sad and impatient often-but those feelings no longer take up permanent residence in my heart or my mind. I didn’t know it right away but my acceptance had unintended and beautiful rewards. My expectations changed. Better yet, I had space in my mind and my heart for the rest of life-positivity, happiness, and laughter. Acceptance gave me balance.
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.
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.
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.
Stepping back, I wish dementia never became part of our story. I still curse it’s cruelty and lack of fairness every day. Yes, there can be beauty in dementia. I’m (beyond) thankful to have found small bits of it in the midst of all the cruelty.
I hold onto the beauty as tight as I can because it keeps me going and because those are the memories I want to keep.
Can you relate?
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Originally published at https://roandsteve.com on May 2, 2019.