Posts tagged Dementia

Today’s guest post is written by John Davis:

Dementia is a lost-ness, a wild unknowing, an uncomprehending path that leads nowhere and means nothing. It does not easily lend itself to sentimentality or imagined goodness. It is stark and haunting.

The distance and isolation that falls over a family is inescapable, as is the cruel glacial drifting that forces people to become strangers to one of their own. It alters interactions and mercilessly constricts those we know until only a shell remains. One sees the mimicking mask of a stranger and feels the sting and ache of a familiar body inhabited by one who is now not known.

At first its presence is barely noticed: a name not remembered, a misplaced pen, a pause, a break, a whisper of a stranger’s voice coming from mother’s mouth. But eventually it forces its way into the center.

She was our common ground. We all knew her doting, her goodness, her infectious love and laughter. We were connected to each other by our knowledge of who she was to us. Now we are bound by her cold unknowing. We are unremembered and unknown to her, and somehow this makes us unable or unwilling to talk of her as if she is who she was. She has slowly fallen out of our conversations, our family rituals – and unforgivably – our thoughts.

Her body is now but a poor memento, a walking replica that is shoddily made. It is not quite right in the important ways. The eyes are different. They no longer perceive or comfort. And the hands are not right. The hands should be better taken care of. They should be softer. They should knowingly grasp back. These don’t. These hands seem to not know how. It is impossible to imagine what these hands have done or where they have been. They do not know, and therefore they can not be known. They are not hers.

I am alone. She is alone. It is joyless, soulless, and a deep sadness.

Yet I am struck by the incompleteness of those words. They do not capture what I feel or all that I know to be true. I refuse to accept the awful arithmetic that allows a decade worth of confusion to equal more than an entire life lived. I know innately that what is broken means less than what is beautiful, and I believe deeply that hope and memory are made of stronger things than a diseased unknowing.

So after witnessing her mind smolder with disease and living through the slow burn I want to shout that there was more, and that I can remember when things were different. I want it to be known that there were days when the sun shone on my grandmother and she was strong and brave, confident in her step and sure in her voice, and that the world was too small to hold her love.

I know what happened to her, but I do not approve, and I am not resigned. So I force myself to remember the sound of her voice, and I say her name to others, and I dream her back to me.

I see her enlivened face as I knew it in my youth: her skin creased like worn paper, her smile gleaming, and her eyes blue splashes of lapping waves on top of a mirrored sunset. She walks towards me and I hear her laugh. I reach for her hand and she tenderly turns my fingers to fit within her own. We walk along the shore as the sun slowly slides beneath the endless expanse of a summer ocean and whisped water strikes our arms and necks and legs. And we talk in half-whispers. She tells me where she has been and that she loves me more than I could ever imagine, and that she always has. I tell her that I know, and that I never forgot her love. I tell her that it was all that I ever really knew.

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