Dying with PSP

I watched my mother die last night.  I looked straight into her eyes, and held her gaze, as she gasped her last few breaths.  I should say perhaps that I was "with my mother" when she died last night, but are any of us actually part of that process, unless we're dying ourselves?

Part of me was outside, looking in, partly horrified, partly fascinated.  I suppose I was in shock.  I did speak to her, my husband did, too; I think at that moment I was thankfully more concerned with easing her way than with my own sadness.  Even though she was largely unresponsive for most of the day, I swear she looked at us at the end and tried to say the word, "love."  Twice.  Husband thinks so, too.

I sat with her a few hours after and still felt like she was there; out of habit, I kept talking to her and stroking her.  Later I kissed her cheek, and it was cold.  I remembered the night before, when the kids and I were watching that HBO bio movie about Temple Grandin. She was fascinated by death, and asked those around her when she saw a dead horse, or a steer:  "Where does it go?  Where does it GO?" 

I also have to say that I was awake half the night hoping that I did not have a visitation of some sort.  I've heard those tales about people, having just died, who leave their spirits hanging around their earthly surroundings for one last goodbye.  Mom herself said that the day after her brother died, she felt his presence so strongly that she opened the window and called out, "Come in, Craig!"  This, I did not need.  This would have put me over the edge.

We're not sure of the cause of death in the end.  She was unable to swallow solids or even liquids without choking. On Thursday, I asked the staff at her home to stop trying to feed her solids, as she continually coughed and teared up whenever she was fed.  I knew that was the beginning of the end, but felt we had no other choice. She did not want to be intubated.  And she was so rigid, so obviously uncomfortable, that at that point I thought it the most merciful thing. Not an easy call to make.

I should add at this point that if you have a loved one with PSP who qualifies for hospice nursing, by all means seek that help.  These wonderful people are knowledgeable and caring, and my nurses at least were available to me at all hours.  And we had quite a few of them.  All wonderful.  Their main concern is making your loved one comfortable.  And they'll tend to you, too.

I'm passing over from relief from her suffering's end to grief, and unfortunately to anger.  She was 65.  Just isn't fair.  I'll get over it, I hope.  I will share what a friend of ours, a Buddhist monk, wrote to me, which is helping me right now:

Peace, my Heart

Peace, my heart, let the time for the parting be sweet.
Let it not be a death but completeness.
Let love melt into memory and pain into songs.
Let the flight through the sky end in the folding of the wings over the nest.
Let the last touch of your hands be gentle like the flower of the night.
Stand still, O Beautiful End, for a moment, and say your last words in silence.
I bow to you and hold up my lamp to light you on your way.

~Rabindranath Tagore