Remnants: A Poetic Dialogue about Dementia

“Poetry is a way of preserving the fleeting moments of life.” – Charles Simic

I wrote this article while staring at a photo of my father kissing my mother. It is poetic in every sense I can imagine, and yet beyond even what I try to grasp or fathom. This captured moment unearthed words, both spoken and written, that illuminated the darkness of her dementia and lit up my world. For these words gave context to the unseen and unspoken. Such rare tenderness between my parents cannot be overstated here. I don’t have many memories of them being affectionate, so this is a warm welcome. Truth be told...

Image Credit: Ravi K. Gandhi. The photo shows Ravi's mom and dad in a beautiful expression of love.

But I hope these words flowing through me, which will never be enough, provide the right measure of touch and back story into my own healing journey. A part of me that had never been fully understood until now.

Writing and Poetry

Writing and poetry turns moments into a conversation with yourself. Something quite different from just speaking to another person. It is a very raw and real inward reflection, when you shed tears of grief with each sentence. It’s more than relief, it’s inner work, with words embedded.

This is significant, because I used to stare at the ceiling in overwhelming guilt and anxiety. Running the same thoughts over and over again, trying to paint and coat the pain, knowing full well, it would seep through anyway.

I write about the early onset dementia nightmare that continually abducts my mom. About her being taken from me while I stand utterly helpless, and the brutal fact that there’s nothing I can do about it. The iterations of this slow burn are many and plenty. I’ll spare you those details, because the endings were always the same. Cutting in and out of dreams at the same point, sweat running down my forehead.

This is the reality many face in our aging society. Gone are the days when I would take her to the gym, or guide her through online exercise classes in an attempt to slow down the progression, or puzzles to try to stimulate regrowth in her brain.  Those efforts were, in hindsight, thought of and acted on with perhaps the wrong intention. But they were not a lost cause. I have learned more about my mother in the last few years than I have in the 40-some years prior. This is where poetry saved me, again and again.

Writing made the invisible more visible. As with many other men, our quiet emotions were hand-me-downs, a silent rite of passage, so to speak. Only later did I understand how writing passages provided printed answers for me to read on the page. Tapping into the unredacted, an open-source code to cope.  It was through this naked process, I realized how much I had kept cloaked.

Only when I shifted to a routine and practice of writing, beyond taking out my journal during life’s most hellish moments, did I become the author of my story once more. I was no longer living, or writing, from an arena of fear, anxiety, or dread from my head. I began to settle into streams of consciousness free-writing that revealed what had long been hidden within me. Prose and poetry from a place of parasympathetic and peaceful purgatory.

I learned about the ‘Peak-End Rule’: the idea that the brain remembers experiences primarily by their most emotional moments, and how they end. But what about when the most emotional instances are the ones that hurt the most, and are occurring presently? How does one change or alter this? You can’t. But with writing, you can expand, widen, and draw out these experiences and rediscover those happy and tender times, old and new, and within them, more meaning. It doesn’t dissolve the anguish, poetry isn’t going to fix grief. Just as poetry can’t fix love. Grief is the other side of love. It’s built-in and inherent.

even as my mom’s fading mind

makes her childlike, the life

lessons never stop.

like the irony and pain of

remembering how to love, was

something i forgot.

The Reality of Grief in Dealing with Dementia

So much of what we hear about grief centers on immediacy and aftermath. That heart-stopping event, and the terrible sorrow that follows and lingers. But grief takes many forms, and the one I speak about is a daily ache. As regular as breath, but with an added weight of sadness. Like my mother, now unable to bathe, feed, or clothe herself. And perhaps worse than all that, the loss of her ability to recall the very vocabulary necessary to express herself. Maybe she never had it in the first place. It’s been that long since we engaged in deep dialogue, if ever.

But then there are lightning-rod moments. Where a line out of nowhere, as if god was speaking to me through her, through love, hits me with shocking significance.  She becomes a conduit and channel for the mystical and grandeur. For instance, when I am quietly doubting myself about my purpose and goals. She’ll say something so simple yet profound and unprompted, like ‘You do your thing ok?’

My mother’s ability to remember may be fleeting, but through these words, through poetry, I shall preserve what’s hers. This is but a small morsel of gratitude she deserves, what she’s earned by enduring all she has had to endure.

As her mind, and subsequently her body grows younger and younger each day, I bear witness to her childhood. To fully experience her inner child from the outside, and that is a blessing. The withering turns to whimpering silver linings. 

I get to shape the experience and form it into something concrete. This is difficult when grief, while emotionally overwhelming and heavy, can feel a bit like getting hit by nothingness. Writing allows me to stitch the wounds with every word, while still acknowledging the scars.

She inspires, by reminding me about the rich colors in the most mundane of plants, as she holds up blades of grass. Or backyard birds singing notes I would normally ignore. Oh, and music, oh the music that brings her such delight upon her face. A smile that touches chords and pulls on heartstrings.

You see, remnants aren’t remains, they’re what stays. The grief may cut deep, but the joys are there for us to find and cherish each and every day.

The attention to detail she gives to people’s faces, to try and understand emotion. Or the unfiltered anger she feels when Canadian winters are too cold for her to go outside, because it chills her bones on the inside. The pieces of dialogue she never got to say when she was younger, or anything else she doesn’t get to proclaim, but that I’ll spend the rest of my days writing in poems, stories, and lyrical essays.

She is living art and the poetry collection I have been searching for on the shelves of libraries, bookstores, and in the corners of my mind, when I should have been looking in my heart the whole time.

She is poetry. She is my mother.

Ravi K Gandhi

Ravi K. Gandhi is a Canadian-Indian poet, writer, educator, and breathwork facilitator living in Guelph, Ontario. He regularly performs and speaks about the power of poetry in front of audiences. He also runs workshops that integrate ideas around healing with writing and breathwork, and how they may help dynamically remove stress and trauma that is stored in the body.

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