Togetherness or Privacy? Care giving at the end of life.

My dad was in the hospital for the last week of his life.  There was a family member at his side every minute – except on the last day, when he died during a 15-minute gap between visitors.

I don’t  write that with regret.  I think that my dad represents a number of people I’ve known over the years who, for whatever reason, needed a bit of privacy to die.

We had a friend who was physically incapacitated for his last three years of life.  His wife was an amazing woman who maintained a gentle, joyful disposition while maintaining him at home as his 24/7 care giver.  Her affection for him was radiant.

She decided to take a short respite break, not out of desperation but just to catch up with some out of town relatives.  She found a local program that let her husband spend a few days in a skilled nursing facility so she could go.  While she was gone, he died.

I was able to get over to the facility before his body was removed.  His face, contorted with strain while he lived, was relaxed, youngish and serene in the privacy of his passing.

On the other hand, there are many people who need companions as they cross over.  We’ve all heard of people who were on the edge of death but hung in there for days until the last relative was able to fly in from Lapland to say goodbye.

My dad’s mother was one of those.  He grew up on a subsistence farm in the Ozark Mountains.  His mother died when he was 11.  He recounted how my grandmother, without the benefit of modern hospital care and life support, lived long enough to have every member of the family get to her bedside, where she spoke words of faith and encouragement to them.

I knew a beautiful wife and mother, killed in her 40s by an aggressive cancer.  She was emphatic about spending her last days at home, with her husband, teenage son, a view of the ocean and a small, scruffy dog that I used to tease as “wimpy.”

She died watching a beautiful Pacific day, with those she loved at her side.  When the team came to remove her body, the little dog I’d mocked as wimpy proved to have a lion’s heart.  He planted himself by the couch where she lay and barked and growled, feinted and lunged, forbidding them to take her.  It took her husband ten minutes to convince the dog it was OK to stand down from loyal duty.  The woman did not die alone.  She had all that she needed for her final journey – a loving send off and a formidable escort.

Sometimes those in our care will be able to tell us if they want us there as they die, or if they prefer privacy.  We can do only our best to honor those wishes, since none of us control the details and timing in any but the most extreme life support cases.  The important thing is to hear those in our care and honor their wishes to the extent that we can, even if that means denying ourselves some of what we might want out of the situation.

We might stay close, in great misery, because they want us there.  Or we might long to be by their side but not get there “in time” as they pass away privately.   Stinks for us, but it works for them.  And I think that gives us room to be gentle with ourselves, not assuming guilt over the workings of a profound mystery in which we are more audience than actors.

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