All That's Left in Dementiaville

It's late afternoon as I enter Romeo's room. He's lying in bed, as usual, eyes closed, breathing the gentle breath of sleep.

I touch his hand, his arm.

"Hello, Romeo. It's me, your wife, Juliet."

His eyes remain closed, but they flutter and a smile illuminates his face.

"Oh," he whispers, "Juliet."

"Yes, sweetheart, I'm here."

After a long moment he utters one word, "kiss," and puckers his lips. I move closer and meet him at the confluence of physicality and spirituality.

"Again?" He smiles, and I gladly indulge the two of us again.

Romeo settles into a peaceful doze, and I hold his hand and sit back to watch him in sleep and to wonder. When Romeo's suffering (his anger and frustration at not being able to function as he did in the past, before he had dementia) fades into the background, and when his mind lets go and he experiences himself only as a content and happy living being, when who he really is looks out of his eyes even as they are closed and communicates affection, what is that?

When Romeo's physical discomfort is not present, when his mental landscape is clear and devoid of disturbing images, when he is not comparing or judging the situation he is in, when it appears that he is simply enjoying the unfolding of life, what is that? When all the unpleasantness is stripped away, what's left?

I have my own ideas about what life really is, but what are your ideas? Caregivers, perhaps more than many other people, are in a position to see life both devoid of everything and full of nothing. And when life is at this unusual balance, when the fulcrum of life is not what we expect, when it is inherently not visible, what is that? Is it acceptance? Is it patience? Is it simply being? Is it grace? Is it love? When life is stripped of everything, what's left? A kiss from divine grace?

Kissing Goodnight in the Nursing Home

Last night I visited Romeo around his bedtime. I enjoy visiting him at that time of day. He's had dinner, he's been tucked into bed wearing clean pajamas, he's smiling, he's pleasantly tired, quiet, peaceful. It's as sweet as putting a baby to bed.

I moved a chair close to him, adjusted the hat he wore to bed to help him stay warm through the night, held his hand. He smiled, eyes closed. We stayed like that, silent, for nearly 30 minutes.

I thought how the dementia continued to change him. Day or evening, sitting up or lying down, his eyes were often closed. He might request a piece of chocolate. I'd open it and hand it to him. He'd try to take it from me, but his hand would reach, his fingers would open and close, not finding the chocolate. "Romeo, open your eyes," I'd say. When he did, he would inevitably find the chocolate. Romeo, open your eyes. I had to prompt him to open his eyes.

"I'd like to go to sleep now," he said.

I rose, moved my chair to the side, positioned the floor mat that would soften the blow if he were to fall out of bed during the night, and leaned over to kiss him on the forehead. He reached his hand out, grabbed something only he saw in the air, moved his hands to his lips, and kissed his own hand. He thought it was my hand he was kissing. I let him think that, reached out and patted his hand. He closed his eyes, still smiling.

I silently left the room, thinking to myself once again about the many faces of dementia, grateful that at least Romeo's gentle spirit is still present.