The hardest thing we have ever done - Palliative Care Australia

The Impact of Caring Through the Voice of Carers
Telling our stories is a political act.
Without stories, there is no articulation of experience.
Without stories, we don’t learn the value of our struggles or comprehend our pain.
Without stories, we cannot understand ourselves or dance in the rain.
We are closed in our silence.
By Carol Christ
For every case of cancer, there is a personal story.
Some like mine and some different.
But each one is unique and touching.
In each case we would prefer it hadn’t happened.
But at some stage we have had to accept that it did happen,
and that that person’s life was changed forever as a result and ours too.
By Chris Archibald
The mental and emotional impact of caring
Carer for both parents with cancer
When mum died, it was to go back to normal. Sadly for me, there was no longer normality. I’d
lost my foundation, I was an orphan, no job, financially in debt. I wanted to die but I couldn’t
do that to my brother, so I existed, I was not living. If anything I was getting further into debt
because I was spending to try and get some sort of happiness which didn’t work. Tried drinking
to ease the pain and that didn’t work either. Lost my license through speeding because I didn’t
care. People didn’t and still don’t want to believe that suicide is a reality for me, because it’s
out of their comfort zone and I’m nothing to them.
The cost of vitamins to keep the depression under control is $100 per week as anti-depressants
weren’t the answer for me, plus $110 per hour for a psychologist, all of which I pay for and the
sense of not belonging because people don’t want to be confronted with death.
It’s been a life experience I’ll never forget, never wish to relive and wouldn’t wish on my worst
enemy because unless you’ve lived it you don’t really know what it’s like.
Carer for mother with renal cancer
For me the greatest emotional impact followed Mum’s death. I felt incredibly empty, and I
found it extremely difficult to return to my home interstate, and then even more difficult to
return to work. My health suffered as I suffered disrupted sleep, and was forced to take
considerable time off work, much of which I was not paid for. My request for short-term parttime
work in order to be able to perform my duties more competently until my health improved
was refused, and I became quite depressed.
Carer for wife with MND
In the case of an incurable progressive disease, the emotional strain on family members starts
well before they become carers, for first there is a period of uncertainty, confusion and worry
to negotiate. What follows, however, is a desperate sense of futility: no matter what you, or
anyone else does, no matter how hard you try, or how tenderly you look after your loved one,
nothing can stop the disease. In the case of motor neurone disease, it means the grieving
starts early: as the weeks and months go on, so much is lost that can never be regained.
40 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004