Look, look, look look look look

Dinner at the Memory Unit turns ritualistic, playing out the same way evening after evening. My mother grips a covered plastic cup and straw with one hand and holds tightly to my hand with the other as I navigate the silverware to help her eat whatever soup, sandwich, or casserole is on the plate. She chews slowly and finishes everything in about sixty minutes. Between bites and sips from the brightly-colored plastic cup, she chatters. But not to me, as her gaze avoids me unless I ask a question. Then she answers with the intelligible,  “What?       What?               What what what what what?”


It's easier to let her stammer.

Very gradually I realize that I am hearing her but not really listening. The disease is taking everything from her, but it hasn't yet, and this time with her still matters.

“K-k-k-k-k..... Sai-sai-sai-sai-sai.... hehm, hehm, hehm, hehm, hehm.... neh, neh, neh, neh, neh, neh....” she carries on, never really finishing whatever word she means. She pauses to look at me sometimes, so I grin with brief encouragement and shove in another spoonful of vegetable/salad/fruit/entree.

My sisters, father, and I all follow this method (holding one hand and managing the silverware with the other) through rotating visits so someone is with her for at least one meal almost every night of the week. Sometimes two or three of us go together, and I catch my father staring as my mother loses one spoonful of food after another down the front of her shirt. Sometimes it is a resigned expression, with glossy eyes and a far away partial smile, as he laments the loss of their shared memories, of the future experiences they will never have together.

Soon, creases expand across his forehead with the pain of watching my mother struggle to vocalize sounds and stick the straw up her nose instead of between her lips. I know this look well, because I wear it also. I think my mother senses that we no longer interact with her as we used to, and that our deep sighs are weighted in disappointment, even if she does not recognize the source.

And guilt accompanies every sigh and resigned droop of the head, as if we are selling Mother out to the disease, too quick to mourn all of the ways she has changed, pitying ourselves for this loss and her transformation into the wretch who crumples smaller with every unobstructed look of pity sent her way.

I feel the situation growing unbearable, until a whisper from the fringe of delusion and possibility, growing steadily louder, turns into a moment of clarity: My mother is here, somewhere, and I need to find her. 

“Mom, it's good to see you,” I say one evening, forcefully and honestly, to the body munching lettuce next to me.

Her head swivels, and her eyes dilate slightly when they connect with mine. I smile. She sits a little taller, shirking off the burden of loss and isolation that the disease sentences her to carry. In this moment, she knows that I am not judging her or making impossible comparisons to her former self. I am seeing her and affirming that she is important.

Though there is no way to know what my mother understands, our dinner conversations no longer feel one-sided.  At least once every meal, she tries to say something that starts with “K' and  “S,” and I guess at what she might be saying.

“McKenzie and Sara will be here later,” I reply, and this seems to reassure her because she moves to something new. Occasionally she spits out “D-d-d-d-d....,” and I assure her Dad will be here tomorrow. The rest is still a mystery, but I give her my attention and she laughs and smiles at me more often.  She sees me because I finally see her.

Of course the experience of the disease taking over my mother will haunt the rest of my life; but finding her still shining amid the chaos and destruction of the disease, this, this, will provide peace when all other memories are gone.