Monday, April 4, 2016

Supporting the Supporters - Recognizing Caregivers

When Susan went through Cardiac Rehab several years ago, there was one session set aside for supporters (or caregivers) of the patients who were enrolled in the Cardiac Rehab program.  The class was called "Supporting the Supporters.This was a stand-alone session and the actual patients were not allowed.  It was a one hour session and there were around 30 people in the session.  It became very apparent that 60 minutes was not nearly enough time.  There were lots of experiences (and emotions) shared.  The amount of stories in that room could have easily filled a very lengthy book.  A book we could likely learn many life lessons from.

There are so many people we have met in our health care journey who have been mentors, and who have been so generous with us to share their own experiences.  I recall many conversations with families when we were in hospital with Russell.  When you are in hospital for many weeks and months you see the same people every day and exchange “hellos” as you meet these people in the hallway as they come and go and carry on their business.  I find it humourous that many of these people who we got to know, I only know by their first name.  We shared some very powerful memories but yet we have no idea where they came from or what they did on a day to day basis.

Over time you develop a dark sense of humour.  I suspect that is a common coping mechanism.  You have to do something to cope with the situation.  I remember one occasion when we were turfed out of the PICU in Edmonton.  There was “something” going on in the PICU and all of the families were asked to leave.  These situations were not uncommon and usually meant something “serious” was going on.  You might see one family in the common area outside the unit and given their body language you know it was their “turn”.  I say the word “turn” as that is the way it seemed.  Everyone who was in there for any length of time had their “close calls.”  It is just that kind of place.  After all these were 18 of the sickest kids in Western Canada.

On another occasion when the PICU was closed several of us gathered outside of the unit.  It was after lunch and everyone was coming back after grabbing a bite to eat.  We assumed that after lunch the PICU may be open.  In this occasion it was not.  A few of us began talking.  The first topic is speculating why the PICU was closed in the first place.  Not a happy discussion.  Then the conversation progressed a little further.  So….what are you in for?  It seemed a little like inmates discussing why they had been sent to prison.  The conversation just gets stranger from there.  One Mom described her son’s illness and without thinking twice she casually mentioned…”Oh…did you hear that “Code” they called on 4C last week…well that was us.”  That was just considered normal.

There were many families who would have very short stays in PICU and we were happy for them.  Many of them were there for surgery.  Their child would be admitted in the morning and then arrive in the PICU in the afternoon.  After a few short hours of recovery these kids would be whisked away to the ward and would be discharged in a few days.  For the rest of us we wouldn’t be that lucky.  We were there for the long haul.  Several of the families we got to know were never lucky enough to take their children home.  I think back at some of those occasions when we saw families who gathered in one of the meeting rooms and received “the news.”  The care team would muster up every bit of sensitivity they could think of and explain “that there was nothing more they could do.”  It is likely that many of these parents knew “the news” was coming but that provides very little comfort when you are faced with the grim reality that your child would never come home.

The first Tuesday of April is Caregiver Recognition Day.  It is on this day that I think of these parents, who were forced to say goodbye to their children at far too young an age.  Somehow we were spared that fate.  The families we spent those weeks with will be forever in our thoughts and prayers as we care for our children.  I learnt so many lessons from them.  How to laugh in some of the darkest moments and to simply put one foot in front of the other day after day.  This is where I learnt to be thankful.

Years later we may meet a family who have gone through similar experiences as us and I am amazed how there is that instant connection.  An understanding of what it is like to be on the brink.  The language, the terminology, is all the same. Much of the communication is unspoken with knowing looks and the knowledge that "I get it."  I think that is the challenge for many caregivers is to adequately express their experience and what it means to them.  For those who have been there; no words are necessary.  We all know that we have to process these experiences in our own way.

I'm very proud to call some of these people my friends and peers.  The people who shared their journey with us.  I have great respect for everyone of these caregivers who blazed a path that we could follow.



  1. Thank you, Donald, for these last few posts in particular. They have definitely resonated with me. The post before this one (on being the caregiver) was so good for me to read. Somehow it validated many of my feelings and circumstances in our own family. Thank you so much!!!

  2. Thanks...was thinking of you folks the other day. Hope things are going well for you folks.

  3. Donald, once again you've captured so much of how I view this journey we're both on. We caregivers aren't particularly good at caring for ourselves. We use humour in a way many people would perceive as inappropriate, but it's what lets us move through whatever is happening at the time. We recognize each other when we meet; there's that indefinable something that connects us, no matter what our unique experience might look like. I'd like to say that moving from peds to adult services might be forced to change to meet the needs and expectations of the growing number of adults with congenital and childhood-acquired chronic health needs, but that's not been our experience. You will always stand out in my memory as someone willing to do whatever is required to make the best of a bad situation and as an ardent advocate for not only Russell and Susan but for every other family who follows in your footsteps. I thank you for that.

    1. Thanks Jan. These past 3 posts have some motivation behind them. We have an appointment coming up with Dr Ross. Yup...we're coming back.