I re-read something I had written years ago, after the death of my mother.  It was titled, “Not just the daughter”, and I remembered the first-hand experience I had, as a family member, of hospice persons presenting themselves as the expert, and myself being reminded to be a daughter, and not a nurse.  I knew then, as I know now, that experiences give us insight, but no one is an expert in someone else’s death.  And no one can assume that a “role” as a family member is contained within the perceptions of what a family member’s abilities or boundaries are.  We bring our whole selves to the death of a loved one, boundaries blur and roles change.

I was reminded of this again, today, as I sat with a family around the bedside of a woman who was ending her days in the hospital, due to extreme pain and restlessness that the family had been unable to manage in the home. 

As I entered the room I took in the scene, a father and adult son and long-time
friend who were slumped in chairs near the bed, and the woman, the object of their focus, now lying semi-covered and very quietly in the bed.  We talked for a length of time, I listened as they told me their hopes for a comfortable and peaceful death, not prolonged by interventions that the medical staff felt should be initiated.  I assured them that the IV medication that had been started today to try to reduce her pain and suffering was not
something that would prolong her time here.

They told me apologetically that she would not keep anything on her, including clothing and oxygen, but I felt a longing to give some dignity to the woman in the room who was nearly naked before us.

I quietly examined her, trying not to awaken a sleeping giant as her quiet repose had only been achieved in the past hour.  As I covered her exposed chest and got to the door of the room to get the hospital staff tohelp position the patient, I heard a muffled laugh.  Entering the room a few minutes later, I noticed the patient was again uncovered from the waist up.  I asked if my effort to cover her had lasted a couple of seconds, and the friend told me, “No, she uncovered herself right when you turned your back, you hadn’t even reached the door”. 

They all chuckled a little, after all, they had warned me and I thought I knew better.  And I couldn’t help but realize, again, that we all are the spectators, we all bring something to the bedside, and each of us must listen to the other, we hospice people and the family members, and ultimately the person who is dying will show us the way, their way, that death will come.

It was just another day, and I couldn’t say “Merry Christmas”, because for them this blend of days at the bedside was much more than a holiday: for them, it was a life time coming to a close as they watched, and a lesson again for me, to listen a little more.