My mom has been living with dementia for over 10 years. At the beginning, it was a disease that hid behind forgetfulness and lost keys. Today, it decides her mood, has taken her independence and at its worst, forces her to stay looped in a series of distorted memories.
Dementia is relentlessness. It is a disease that never gives up. You can’t see it, nor does it give warning. It quietly welcomes itself in and confidently waits. Slowly seeping into every part of a person, until they’re gone.
This is a letter to my mom and the disease she is being forced to live with.
You grew up in a small northern town. With a population of 200, you were the eldest of five and had a fire in your belly from birth. You understood that the world went beyond the main gravel road of that small town. You were restless to see the world, to challenge your expectations of what you could be and where you could go. You stood at the edge of that gravel road, fearless. In moments when it all seemed too much, you would scream into the darkness. It wasn’t just about letting go but reminding yourself that there is always a way out.
Now, I stand before you and all I can see is that younger version of yourself, standing at the end of that road, screaming to get out. Suddenly the unknown has taken the shape of an insidious disease that is forcing you to be trapped in a world that none of us can help you escape. It’s keeping you captive and all I want to do is yell at it to let you out.
I want to walk on that dirt road with you. When we hold hands, we hold onto each other a little tighter. This battle with the beast is exhausting. For as much as it is slowly trying to chip away at the beauty that is you -you’re still fighting, still showing up and still greeting it with grit and grace. I can only imagine how exhausting, frustrating, and angering it is to have to fight even harder to still be you. But even then, even in the most exhausting moments, you still show up. Always greeting me with the most welcoming smile and warmest hug. All I wish is that I could fight it with you.
Every day, it takes hold a little bit more. Wiping away the now, pushing you back into the past. Making you stuck in a space where the windows are slowly darkening, the doors are becoming harder to open, and the sounds of today are lost. It is now a disease that has become the third person in the room. The one no one wants to welcome but we all know will never go away. Every day you fight it, battle in ways we only see glimpses of from the outside. To watch you still fight, to still hold on tight to me and as it is slowly trying to take over, is heartbreaking. I understand where your moments of frustration and anger stem. It wants to erase all that you remember and all of who you are.
From the beginning, you showed me love like no other. Determined to fight the odds, defying what was medically advised, you allowed me to stay ten months in your womb. I arrived on your birthday. Your selflessness was unwavering. You taught me how to laugh, most importantly at myself and the nonsense of life. You didn’t let me give up, especially in the moments I didn’t know how to keep going. You taught me to let go of perception, to stand tall when all I wanted was to shrink and disappear. Your way of seeing the world was always full of insightful observation and quiet sarcasm. Without realizing it, your fierceness, your fortitude, and grace — are what I draw from in these moments when I miss you the most.
You are the woman who raised me, who picked up the phone whenever I called, who showed up to support every event and moment that mattered — that stood beside me through every twist and turn, who held my hand, wiped my tears, and never stopped asking me the hard questions in moments when I needed to be reminded of who I am and what mattered to me most. You taught me to look within, to not shy away from giving space to all the feelings and most importantly to be kind to myself and to others — thank you.
You never stopped hugging, laughing, or loving me. You gave and you gave, and I will never be able to give back to you even a tenth of what you deserve. I am beyond grateful and beyond heartbroken. I hear your voice when I want to give in to anger. It’s your examples of selflessness and love that made me who I am. You taught me to not give up, even when things feel impossible. Right now, it feels impossible. The only reason why I haven’t given up is because of you.
I find myself reliving moments between us. I remember watching you drive. Seeing you in a moment full of freedom and pure bliss. The windows open, the breeze warm and strong — the radio on. You hiked your skirt to feel as much of the sun and wind on your skin. These are the roads you grew up on. Once gravel, now paved. A place where when you were younger you wanted to escape and now at this moment, you’ve found solace. At this moment, you are without any feelings of regret or loss. You are at home. Driving the curves of these backroads in bare feet, I remember you glancing at me quickly from behind your sunglasses. Me, stuck in the middle of a tsunami of teenage angst — you, without any hesitation, full of joy and comfort, sharing this moment with me.
We fought. We apologized. We listened to each other’s stories. You always had time for me. You gave me the space to feel, to fall, to express, to explore. We challenged each other. Even when I was impossible to understand, you always showed up. Your belief in me was unwavering. Your love, resilient.
My words will never adequately describe or give life to all that you gave me. Thank you for sharing your happiness with me. For letting me shine, for always standing beside me even at this moment.
You taught me to put love first.
Regardless of the challenge, regardless of the feelings of fear, anger, or doubt — you never stopped pushing, living, and appreciating. I will never let go of who you are. Dementia is now a part of you but it will never erase the beauty, strength and woman that you are to me.
I love you,
Paula lives outside of Toronto with her 3 children and partner of 20 years. During the day she is an Account Manager in the digital marketing space and in the evening, a visual artist and writer. You can find her on Instagram @_paula_coop.
This essay was selected as part of Shedoesthecity’s New Voices Fund, established to help continue offering opportunities to talented emerging writers with less than 20 bylines. More info here.