Posted: 5 November 2018
Lynn Cawley is the mum of Josh who died at the age of 22. She's shared her story about the end of life care he received and the impact this had on her family. She talks openly about the struggles and why these new resources we've developed around her story are so important for her family and end of life care. The resources are called Bounce Back Boy and are launched nationally during November.
I guess it’s always important to share a story before it gets lost in time and inevitably becomes a black and white snap shot rather than something living and organic. Josh was ‘alive’ for an all too brief 22 years, but it’s the last few months leading up to his death that are seared into our memory. Joshua never fitted into a box and how we loved that about him.
His dying however would have been so much easier if he would just (this once) fit the tick box shaped expectation of ‘palliative care’ but Joshua’s complex disability discriminated him from the care so many before him had benefited from and his death, as traumatic as it was, has given us an opportunity to make a difference for other young adults who, like Josh, die far too soon.
To other parents on a similar journey we would say fight like you have always had to do for schools, equipment and care needs. Dying is no different, don’t be fobbed off with tick boxes and generic end of life plans.
Don’t accept that your young person is ‘too complex’ and don’t assume that care available to others will be available to you. Work out as soon as you can what you might want and need and don’t assume someone else will be able to guide you through.
For other parents, be honest about your expectations, what YOU can and can’t offer and don’t feel obliged to be the carer when you so obviously need to be mum.
We are all aware that we get one chance to get this right and sometimes people, nurses, health professionals will take a risk, look up beyond the form they’re filling in and see you and your family as unique and individual. They are the ones you need to work with, ‘getting it right’ can never be a form filling exercise!
‘Getting it right’ for Josh was about people taking risks, breaking unwritten rules, maybe trying something that hasn’t been done before. But unfortunately we don’t all have access to the same care, and there are far too many variables such as where you live, which hospice is nearby, what team is available, funding issues etc.
For us, we were not prepared for Joshua’s journey to end like it did. We had no experience of death and certainly wasn’t aware just how horrific it was about to be. Death isn’t always peaceful.
We are acutely aware just how difficult talking about the impending death of a young person can be, but please – talk to us, warn us. This is the time for brutal honesty and preparation, we need to hear and comprehend the truth of what we might witness and as we look back on our story we know that we are forever scared by what happened to us.
The most intimate and precious time was wasted by trying to buck the system, shouting, coordinating and advocating for our dying son to die in a dignified and beautiful way.
We plan for birth, we’re allowed to be ‘person centred’. We can be creative, change our minds and talk about what we want. We deserve no less when we guide that child towards death.
Death will always be a taboo subject, it’s even more taboo when you are young and have ‘complex needs’ and we’ve learnt that what’s easiest is always the first option given to you. So if you have a young person who needs palliative care, then you will need to look beyond what’s easiest.
Josh lived a full, exciting and active life. He was full of personality and he loved deeply. We saw nothing ‘complex’ about Josh. We should all have the right to the same care as we die, everyone should have a choice.
Josh didn’t get to have a choice, we didn’t get to have a choice but now everyone has a choice to hear our story and we hope that our story will change that for others.
For more information and to access these resources visit www.hospiceuk.org/bounce-back-boy.