Approaching death

My mom nailed her Hospice by the Bay interview.

Peter, the good looking millennial admitting nurse spent an hour talking to me, my sister Jamie, and Pilar, the extraordinary caregiver and founder of Shalom House, a group home for people with dementia. He asked several questions intended to qualify my mom for the Medicare funded range of hospice services.

Then he asked to speak directly to my mom, who slumped in her wheelchair at the dining room table, eyes closed, right arm shaking. We believe that she suffered a series of TIAS, or mini strokes this week, bringing her to a new level of dysfunction, unable to move, speak more than a word, or eat more than a few bites of soft food with assistance.

“Hello, my name is Peter,” he said leaning in, his face close to hers. “Can you tell me your first and last name?”

No response. He asked again. Nothing.

“Mom, can you open your eyes and meet Peter. He’s here to help us.”

She manages to open her eyes and looks for a second at Peter, who repeats, “What is your first and last name?

“Sexy,” she says and we all crack up.  

“Sexy” Zemel qualified for hospice services. Within a day, I received calls and met with members of her support team including her nurse, Casey, a social worker Katerina, and Rabbi Miriam, our spiritual counselor.  From my intense conversations with each of them, ranging from understanding how to make decisions about discontinuing medications, to honoring our cultural Jewish roots and practicing loving kindness in the face of death, to identifying mortuary services,  I am sure that we are in good hands.

Though I have witnessed family and friends utilizing hospice services, this is the first time I have been so intimately involved.  I am greatly relieved.   Providing pain and symptom management, and care and comfort to patients, their families, and caregivers, is the mission of this organization that has been around in Marin for 44 years.   

End of life – these people have seen a lot of endings and know what to do.  For the past few months I have been using an app on my iPhone called “WeCroak.”  It randomly sends me  5 quotes per day, all reminding me that we are going to die. The creators of the app decided on the number 5 because in Bhutan “they say that contemplating death five times daily brings happiness.”

I enjoy this antidote to the bad news barrage of other social media.  Reading words from writers, thinkers, and spiritual leaders about death keeps life real and grounds me as I navigate this transition with my mom.  My own mantra this week has been “embrace fragility, accept uncertainty.”  

Dying is one incredible process to witness and experience.  We don’t talk about it nearly enough.  Nor do we discuss ambiguous loss and dementia, though this robber of a disease has stolen so much from so many families.  Often what I’ve experienced with my mom this past ten years has left me feeling very alone and sad.   I am still very sad but feeling less alone as we make this journey towards her death. 

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.