BEARING BURDENS

burdensThe question is asked in various forms, and goes something like this: “How long do you think she has, then?”  I know the question is coming, and I also know I am limited in my ability to answer with accuracy.  We often say in hospice, “No one has a crystal ball”.

Usually there are “signs” that death is coming soon, things that those of us who work with the dying recognize as the hallmarks, in the weeks before, evidenced as the advancing of a disease process with symptoms that require closer monitoring and managing.  Symptoms like slowly waning appetite; sleeping more with increasing general weakness (most people will end up unable to get out of bed); a need for getting things in order; sometimes spending energy in “life review”; “detachment” with the other-worldly look on the face.  In the days before: less ability to converse and concentrate; inability to swallow; expanding levels of decreased responsiveness; periodic restlessness or anxiety; skin color changes; breathing changes; the diminishing of the human substance of a person.

John asked me the question, and I relayed all the signs that indicated his mother was dying soon.  He couldn’t wrap his head around the fact that only yesterday she was still talking and taking sips and today was not waking up.  Her body was swollen with excess fluid, and her breathing was raspy.  He told me he could hardly stand the suffering that her dying manifested, and I knew he meant mostly for him, the bystander- never easy, to be so helpless at the bedside.  She looked comfortable and peaceful and seemed to be listening to something beautiful outside her room.  He looked distraught and anxious.  I knew as she lay there, the mother of this adult son, that her wish was to not be a burden to him.  I also knew that dying is a kind of burden for us all.  We carry the suffering of watching our loved one diminish, anticipating their death, even as we want another day or hour with them. 

That same day I sat with Belinda as she complained about the TV in her room, and needing some re-arranging of pictures on the wall, and the food she wasn’t fond of, and the ennui that was part of her daily routine.  Her loving family visited constantly but could no longer care for her at home.  She had asked me some time ago, if she forsook her treatment, how long would it be before death was inevitable?  Ah, the question.  I told her for most people, with her particular disease, my best guess would be less than 2 weeks. She looked away and did not discuss this option again.  Her treatment for one disease kept her alive while the cancer dissolved her bones and grew larger tumors.   The slowed progression of the inevitable was her choice, and I knew it was fraught with the likelihood that pain would increase incrementally with every treatment she chose, and I also knew she wanted to eke out as much time as she could. 

Nearly every person who knows they are dying voices this dual concern, how long they have left,  and being a burden to their loved ones.  For those of us who have been with our family members or friends as they died, it is indeed a load we carry, borne with both joy and difficulty; to suffer with them as life ebbs, a worry and a weight we choose to carry, and one we would not shirk.  As the song says, “He ain’t heavy, he’s my brother”.            (song by Bobby Scott and Bob Russell)

The road is long

With many a winding turn

That leads us to who knows where

Who knows when

But I’m strong

Strong enough to carry him

He ain’t heavy, he’s my brother

 

So on we go

His welfare is of my concern

No burden is he to bear

We’ll get there

For I know

He would not encumber me

No burden is he to bear

We’ll get there

He ain’t heavy, he’s my brother

 

If I’m laden at all

I’m laden with sadness

That everyone’s heart

Isn’t filled with the gladness

Of love for one another

 

It’s a long, long road

From which there is no return

While we’re on the way to there

Why not share

And the load

Doesn’t weigh me down at all

He ain’t heavy, he’s my brother

He ain’t heavy, he’s my brother

About Amy Getter

MS, RN, CHPN
This entry was posted in end of life care, hospice story and tagged , , , . Bookmark the permalink.

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