Dementia: A Personal Reflection

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09/03/2009 - Dementia: A Personal Reflection

by John Davis, Parts I & II

Part 1

It is obvious to me that what I have seen and known in my life informs how I perform my job. That is never clearer to me than when I encounter the devastating effects of memory loss in the life of someone that I come into contact with. Both of my grandmothers fought their own battles against the disease, and in so doing taught me about life in ways that they could never have done otherwise. These words are a tribute to them.

In my attempt to understand a disease I begin by trying to define the word that is used to describe it. The word dementia literally means apart or away from the mind. To be apart seems to imply an otherness. To be away from the mind suggests that one is lost, lost within one’s self, and unable to find a way out. Dementia then is a lostness, a wild unknowing, an uncomprehending path that leads nowhere and means nothing.

At least that is how it feels to sadly stare and impotently respond to what happens. The exact details of how a mind deteriorates are not known. Nor is it understood why the disease strikes when it does, charting its twisted course through the afflicted. These are not known but 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. What binds and defines is lost. Unmoving stares replace the dance of lively eyes.

The affliction is not generous. It does not easily lend itself to sentimentality or imagined goodness. It is stark and haunting. It weaves itself into the very fabric of a family. 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. It strikes the one in whose mind the family had always been so firmly one, so tightly bound that eventually the individual parts slowly came to form the whole that she had always envisioned.

But maliciously, unnoticed and unchallenged, it begins to redefine the narrative of an individual. It alters interactions and mercilessly constricts 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. The disease is a great deception, a cruel joke, a wrong that no one seems to know how to make right.

She was once our common ground. We all knew her doting, her goodness, her infectious love and laughter. We were connected by our knowledge of who she was to us. But now we are bound by her cold unknowing. We are unremembered and unknown to her. We are 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.

In the end dementia feels like a drifting, a drift from what we had and once knew to what we have now and know nothing of. It is the practice and process of growing unaccustomed to one once intimately known. And in its conclusion we find ourselves alone, continentally separated from the one who was once so close. We are forced to recognize our partial aloneness contrasted with the total isolation of the afflicted. It is joyless, soulless, and a deep sadness.

Part 2

And yet as I write those words I am struck by their incompleteness. 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 finer 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 want that to be said out loud and for the remnants of her life not to be allowed to waft away without an acknowledgement of who she was and what she did.

So while the world remains indifferent, and the entropic pull of nature gusts like a strong wind, I resolvedly mouth the words of the poet, “Gently they go, the beautiful, the tender, the kind; quietly they go, the intelligent, the witty, the brave. I know. But I do not approve.And I am not resigned.” I know what happened to her, but I can not approve. And I am not resigned. 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 and know that she has come home. 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.