The hardest thing we have ever done - Palliative Care Australia

Positive feedback about the role of caring
Carer of mother with renal cancer
I need to stress that caring for Mum has been one of the most rewarding things I have ever
done - it was a beautiful experience, and one that I will value and cherish always. It has made
the grieving journey harder in some ways, but I am left with the most wonderful memories of
my Mother whom I got to know in a way that was so much deeper than I could ever have
imagined. It was a privilege and a joy, and I hope that many others may take this path and
reap the same rewards.
As you define ‘social impact’ for the purposes of this inquiry, you talk about factors that
‘subtract’ from the quality of life of the carers. However, it is hard for me to see that anything
subtracted from the quality of my life. For I feel that every factor, every experience, no matter
how difficult, all added to the total experience and enriched me. I could talk about the
negative things, but these seem out of place without balancing them with the positive - and
the positive far outweighed the negative. I could see that there could have been certain
improvements in the health system that could have served to increase my mother’s and
ultimately my own comfort. And I realise that I had the skills to navigate the system where
many others may not have. I had the advantage of being younger and stronger than many
carers, and also I came into the situation willingly, it was not forced upon me.
Carer for son with bowel cancer
I feel very passionate about being able to die at home, that I have joined the Palliative Care
Volunteers Support Group. I hope, with all my heart, that I can pass on my experience to as
many people as possible and to help them die well.
Carer of wife with MND
I have the deepest admiration for carers, for I now know what they have to cope with, in many
cases for much longer periods of time that I had to. Few people ask to be carers, in the sense in
which you use the word. But being a carer is one of the greatest gifts we can give to those we
love – even though we wish it were a gift we never had to give.
Carer for father with prostate cancer
On the whole we feel we managed quite well. It was the hardest thing we have ever done. We
are a very close family and everyone pulled together to do what we all thought was best for
Dad and Mum. Unfortunately many families do not have the support of each other as we did. I
know a lot of people might like to stay in their own homes but do not have the support from
families and friends. It is a big big job and everyone deals with it in a different way.
Carer for son with bowel cancer
His sister and brother took leave without pay to care for him. It was the most wonderful thing
to witness as the bond between the three children became so strong.
Carer for father with prostate cancer
Many people today on hearing about palliative care think of it as full of sadness- and there is
this element in it- but actually it also holds many light moments of joy and pleasures in
meeting relatives, sharing a joke, recipes… Reaping the experiences of new ideas and obtaining
values, challenged by the unexpected, and gaining a new slant at looking at life. Speaking for
myself, I have found it to be a most rewarding sincere venture. I did my palliative care training
after my dad died and I am continuing as a palliative carer.
THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
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