To my dear fellow advocates …
If you are reading this letter, you are about to embark on a journey of a very different kind, as this one will take you to places emotionally you have never been.
As it’s a journey there will inevitably be a destination and it’s at this point when the struggle is finally over that hopefully you will realise it’s all been worthwhile.
I just hope these words may offer you a little comfort during the times when you may feel overwhelmed by the loneliness of the position you now find yourself in and one for which you can never be fully prepared.
The following is obviously only my personal experience as an advocate and I am very aware that the situations may vary considerably. However, without doubt, the common thread will be the enormous range of feelings and emotions that we take on board as we go through this process that at times can be incredibly confronting but also so very rewarding.
My story began when John, a family member was diagnosed with a very aggressive form of brain tumour for which there was no cure and where the prognosis was devastating. When John was given this news, along with the fact that the end-of-life phase of the disease would be extremely challenging, he made the very considered decision to investigate Voluntary Assisted Dying. At the beginning it was very hard to hear him speak about this and even though I could understand his decision and supported him completely it certainly didn’t make it any easier. As I put the phone down after the initial call I remember feeling dazed and so incredibly sad as suddenly his illness had become all too real.
In the beginning John only wanted the permit for peace of mind, thinking he may never use it, however as his disease progressed that changed to a real sense of urgency. It was agreed that myself as his older sister would be the person to accompany him through the process as his wife felt unable to do it and his two daughters were only in their early twenties.
We were however very fortunate that they and other close family members supported his decision which proved to be invaluable during what turned into a very harrowing and challenging time.
We were fortunate yet again in the way John himself bravely faced his diagnosis and the situation he found himself in and that definitely filtered down to us all for which we were eternally grateful.
I must say though, with hindsight we were both very naive about the process. I will never forget the first meeting with one of the VAD team members and the feeling of being stunned as we listened to the details, firstly of the process but more particularly of the death itself.
It was at this point that I remember almost pinching myself to believe this was actually happening. There I was sitting next to my beautiful and much loved younger brother learning how to help him end his life and to say it was surreal is an understatement…
This was one of the times that I personally felt overwhelmed. This was also due to the fact that John had lost most of his speech so I then had to pass on all this information to the family which was very confronting for us all.
Unfortunately in John’s case the disease progressed at lightning speed and before we knew it he was in the end of life stage. Sadly due to this escalation he did suffer for a number of weeks before his death which was unbearable for him and also for the family as his personality changed and we watched him become a completely different person. This was one of the loneliest times for me as his advocate as prior to this it was both of us working together.
If only we had asked more questions about where he was in relation to the end of life earlier he may well have missed out on all the suffering at the end … his is one of one of our biggest regrets as it could have been so different, therefore something for you and your loved one to bear in mind.
When the VAD permit did come through and we realised it was to take place in 72 hours, the relief that his suffering was finally coming to an end was indescribable. Once again telling the family and making to call to the pharmacist to dispense the medication was a very tough time for me.
Understandably the emotions for all of us ran the length of the spectrum but overwhelmingly it was one of gratitude that his wish was about to come to fruition (albeit it later than we all would have preferred) and that his family would be at his side which was to John hugely important.
Of course, none of this could have happened without the VAD team. Firstly, the courageous doctors who stand up when they see such unnecessary suffering, not only to support but to enable it to actually take place. There are simply no words to convey our gratitude to the particular doctor who assisted John and we will never forget the kindness and compassion he showed us all. In fact whenever he entered the room John’s face lit up, knowing that he completely understood his situation.
Also the support of the members of the VAD team at Monash was invaluable as they organised appointments, and helped navigate what at times can feel like a very frustrating process.
Having said that we mostly understood the reasons for this frustration.
For me it was an honour and a privilege to be John’s advocate on his final journey and the experience will stay with me for the rest of my life.
So as you begin to move into this completely uncharted territory, just know that others have walked the path before you & understand…
I wish you well.