Not An Ordinary February

 Not An Ordinary February Day

By Eve Brownstone

It wasn’t a typical February day. The temperature was pushing 50 and the sky was bright.  Mom enjoyed the Sun in her electric wheelchair with her caregiver.

By 3:00 a.m., she would be gone.

Mom had been diagnosed with Bulbar ALS in March of 2010. By February 18th 2011, the disease had taken almost everything—her voice, her ability to eat, to move. Bulbar ALS starts at the throat, stealing  your ability to swallow first, then  speech, then the body. But it’s the inability to breathe that finally takes you.

That week, she had been declining fast. Her oxygen levels were dropping. She had great difficulty communicating with her iPad.. Her fingers and toes were turning purple.

That night, I stayed over. I wanted to be there, to offer whatever support I could. I returned to my folks' condo after  a day long training for work  by  6pm. Mom asked for dinner with her ipad.  I gave her the usual amount of liquid nutrition through her feeding tube—it was routine by then. But I didn’t know she had already taken her medication. We were warned: Never feed her too close to the meds.

And then she started choking.

Panic surged through me. My stepfather, Dennis, and I scrambled to help, trying to suction the liquid from her throat with a long plastic tube. Desperately. Helplessly.

This is hard to say out loud. Breathe, Evie.

I called Julie, the hospice nurse. She told me to give Mom morphine—to make her comfortable. She was on her way.

Julie arrived within the hour. More morphine. An oxygen mask. Mom’s breathing was still labored.

Then Julie looked at me, her voice gentle but firm:

“This is probably a catastrophic event. Be prepared.”

Mom was dying.

Dennis couldn’t handle it. He disappeared into the bedroom, shutting the door behind him. He would stay there for the rest of the night.

I wanted to shout out loud, “ Don’t leave Dennis. Don’t run away.  You are leaving your wife alone and she is fucking dying. I held my tongue as he closed his door behind him. Then went over to mom and held her hand sitting on the shag carpet by her hospital bed in their living room. Her eyes were open. She was still here.

The past year flashed before me—the hours we spent together. I had dressed her, brushed her hair, cared for her in ways I never imagined I would. We had let go of old hurts, softened in the face of time running out. And now, here we were, at the end.

Then something happened.

Mom turned her gaze toward the side window. Slowly, she reached out her hand—her fingers stretching, grasping at something unseen. Someone unseen. “ Who are you seeing mom?. Maybe your grandma Annabelle is here with you, I think to myself.

And then—her hand dropped.

And I knew.

I knew she was gone.

For a long time, I blamed myself. It was easier to carry guilt than to sit with the unbearable truth of loss. Maybe, on some level, I thought if I could just find a reason, it would make sense.

But I know now—I didn’t kill my mom.

ALS did.