In the Nowness

I sit in the sunshine with Shirley, whose eyelids flutter, then shut like the yellow dogface butterflies that flit about the peonies planted in pots on the patio outside her bedroom at Shalom House.

Her royal blue shirt matches her eye color, and her white silver hair curls feathersoft on each side of her head that tilts a bit to the right. She relaxes as Frank Sinatra croons from my iPhone.

She’s in this dementia fugue state more often than not. Today, I attempt to engage her in a game of War, one of the first card games she taught me and I played with my daughter when she was a toddler.

“What card game did your parents like to play? Poker?” I ask even though I know the answer. Sometimes I can reach into her past and pluck a memory for her like a fragrant flower.

She shakes her head yes, as I turn over the cards in her pile. I end up playing both hands, so honestly, I’m not sure who actually won. A fierce competitor, my mom liked to win. She was a lousy loser. With time I’ve learned to be a gracious loser but I too prefer winning; more importantly I give a game my all if it interests me. I invest more in the process than the outcome.

Shirley rests in the sunshine, with so little cognition left that she can no longer do simple puzzles, speak sentences, or sing the lyrics to the songs etched in her failing brain. I ask her if she is comfortable and she once again slowly nods. I stroke her arm and take her hand in mine.

I examine her face closely, marveling at the smoothness of her skin. and wonder where in the world she has drifted off to. I softly ask if she’d like to leave the planet but she doesn’t open her eyes, nod, or answer my question that is more a suggestion. I look again to make sure she is breathing. She is.

I wonder what her death will look like. Will she slip away in her sleep? Will her brain stop sending instructions to her body? How much more can she possibly lose? What is she waiting for?

I think a lot about her dying, about her life, and how she has arrived at a place that is defined by deficits. Memory, language, mobility, ability, identity, these all elude my once smart, stubborn, in-charge mother, as she struggles to do most everything. Without her caretakers, she surely would die.

They tell me that my mom wakes sometimes in the night and cries out for help. But she can’t say what she needs, and once reassured, she falls back to sleep.

Some days I can hardly muster the strength to simply sit beside her. But I do it. I am present and kind and gentle with her, with myself, for her, for my father, for my family.

Witnessing this long descent into dementia hell has tested my patience, flooded me with anxiety, and racked me with sorrow. But here I sit with her, in a moment of acceptance, the sun on my face, reminding myself to just be here in the nowness. For my mom the now is what she has left.