Category: Death

During the winter months when my children were young, I would often set up a jigsaw puzzle on a table in the living room. It would always have at least 1000, often more, pieces. The table would be a place where one or more of us could sit whenever we felt inclined, to sort pieces into piles, or put some pieces into the puzzle.

Occasionally I would stop by the table as I walked past and spot a piece and its perfect space, placing it, then moving on to wherever I had been going as I passed by. Other times I would look over and two of the kids would be sitting quietly but with intense concentration on whatever individual parts they would be working on, sometimes offering advice or a puzzle piece to the other. The table would be a place where we could sit in complete and comfortable silence together, or a place where sometimes the most meaningful of conversations would take place as we worked alongside one another.

As the picture grew, pieces were sometimes found to be in the wrong place, and removed, or moved elsewhere, occasionally the right piece found straight away, or sometimes this left another gap to be filled later.

Some puzzles were completed in only a few days or a couple of weeks, others would take many weeks. Twice we had puzzles that were found to have a couple of pieces missing and this would create immense dissatisfaction for us all. Even then, I would find it impossible to throw the puzzle away for the sake of one or 2 missing pieces and would sometimes forget when I brought it out in another year. Once, on a second around, the puzzle with missing pieces the year before was now found to be complete.

As I began working more with people who had experienced the death of a loved one, I would find the analogy of a jigsaw puzzle in relation to the journey of grief to be really helpful. Exploring grief as an ongoing journey in the creation of a new picture for the future, and for today was a way to explain finding a new ‘normal’.  It could be a messy journey that sometimes frustrated with so much out of order, and sometimes delighted with the finding of a piece, or memory that delighted. Most of all it was a very individual journey.

No two people put the same pieces down in the same order or the same way. Some look for all the edges and carefully place a frame. Others select randomly. Others sort. The purpose is a new picture, but it doesn’t matter how long it takes to finish. It doesn’t even matter, at the end if one or two pieces are missing. The new picture sometimes looks like this, spaces that feel empty and can’t be filled. It might be the case that one day in the journey the piece for that spot becomes obvious.
Sometimes it is very obvious what each piece represents, whether it is fear, or anger, or sadness. Other times it is just another piece in the journey and it feels lousy, but it doesn’t need a name. Sometimes the puzzle has 1000 pieces and takes a few weeks or months. Sometimes it has 100,000 pieces and will take many years. As long as new pieces keep being placed, both of these are okay.
Some people need to work on the puzzle alone and find helpful advice from others to be annoying and distracting. Other times, having someone sit beside, helping to identify the parts of the journey, or just sit in silence brings great peace.
Eight years into our journey since our son died from cancer, I sometimes think the puzzle is nearly complete, and other times there seems to be so many gaps. A piece of delightful memory will catch me by surprise one morning then a piece of disbelief and sadness later in the week. There is no ‘right’ way for our picture to look. No one way to put all the pieces in place, and no timetable for when it has to be complete..

I've been reading a lot lately about 'dying with dignity'.  Euthanasia has been prominent in the media for some time, but it was the Brittany Maynard media storm and the constant reference to 'Dying with Dignity' that I began to find truly offensive.

As  a nurse who has worked in hospital based palliative care and with terminally ill people still undergoing active treatment and participating in their lives, I witnessed enormous courage and dignity, as well as love,  laughter, fear and pain.   As a mother who nursed a child until his death from cancer, I experienced all of these things and more firsthand and I am offended by the idea that it takes courage to end your own life rather than live it to the end, or that taking your own life is more 'dignified'.

Dignity is defined as the quality or state of being worthy of esteem and respect, or of behaving in a composed or serious style.  How is a process of living until one dies not worthy of esteem and respect?  How is continuing to have hope and continuing to be in relationship with people you love while you live until you die, not courageous?  

Why is it considered more 'dignified' to end your life rather than to embrace it and live it until the end? 

What are we saying to those who chose to do this, when we call those who opt out 'courageous'?

More than a decade ago I was asked to help out at the home of my husband's cousin.  Julia was terminally ill and suffering metastatic brain tumours.  When I arrived, her elderly mother and aunt were struggling to take care of her, but Julia had refused to go into hospital.  Julia was confused and would often cry out asking why she was in bed, why her head hurt.  She was kept in a dark room and even her small children were too scared to go in and see her.   None of it was what we might consider 'dignified'.  It was scary.  For everyone.  I worked with the palliative care team to balance Julia's medication so that she was relieved of pain and nursed the family through understanding that this would mean Julia spent a lot more time sleeping.  It took a couple of days to get her comfortable.

I put a pretty nightie on her, opened her curtains, played some lovely music and invited her friends and family in, where they sat around her bed and conversed, and laughed.  Most of the time Julia slept, but she often smiled, would open her eyes briefly and catch the eye of someone and look happy.  Her children would snuggle on the bed next to her.  A few days later Julia died, with courage, peace and dignity, in her own home.

Only a few days earlier, she may have been considered a prime candidate for euthanasia, seemingly in out of control pain and everyone around her suffering along terribly.  It scares me to think of the last memories her children would have had of her if that had been allowed.

What message are we sending those who are living with a terminal illness, or those who are elderly and feel like a burden when we tell them how brave it is to choose to die rather than how beautiful it can be to choose to live?  Life is not always as we want it to be.  Sometimes it is full of pain, both physical and psychological. Sometimes we have to modify our desires to be in keeping with our capability, but this doesn't make us less worthy of esteem, less dignified.

Sometimes those around the person with less time to live have to make sacrifices as well.  The sacrifice of time, money and energy in order to help a person be courageous, to have hope, to continue in relationship with us while they endure.  As human beings, we need one another for most of our lives, and often our needs, or the needs of others necessitate sacrifice and giving from ourselves or someone else.  When did this become a bad thing, instead of a sign of good character?

Courage and dignity was what I saw in my beautiful step-son who I nursed through 9 months of illness before his death from cancer.   Courage when he was most scared and so much life when he was at his funniest and had us laughing in spite of ourselves.  It was what I saw as he lay in bed on his last night of life, holding my hand and smiling, reassuring me.  Courage and dignity is what I saw in my husband as he listened while his son's heart drummed its last beat and as he carried his son's ashes to his graveside.  It was hard.  It was terrifying.  It was cruel.  The pain my son endured was unfair.  He lived and died in relationship with us, and with the greatest of dignity.  Not one second of his journey, however difficult and painful for all of us, was wasted.  His life was not ours or even his to take.  It was his to live until the last. 

Everyone should have that opportunity.

 .