The hardest thing we have ever done - Palliative Care Australia

Carer for father with prostate cancer
The hardest part of being a carer is ‘feeling his pain’ or in other words seeing him suffer. Other
‘hard to take times’ were the self-centredness repetition of stories, hard of hearing, the
responsibility of knowing when to contact the hospital, the hormonal sweats, one minute
being too hot and taking a cardigan off to the next being cold and putting it back on.
To help me not take things so personally when he was being grumpy, I reminded myself of a
quote which says “the language of pain is hurtful anger”. I had a piece on my fridge called the
carers 10 commandments and when I was feeling things getting too much for me, I used to
read this through- which was almost every day. Also a doctor mentioned the 4C’s which was of
help: Commitment- don’t take anything you can’t see through; let them Control their own lives
as much as possible; have an outside Challenge and Connect with a belief system or develop
a passion.
Since I no longer have my father, it’s like missing a handbag on your arm. My lifestyle has
changed from cooking to talking and experiencing in a real way, what makes the difference in
the way we feel about things, is knowing the depth of the loss.
Carer for mother with MDS and father with dementia
My father became quite aggressive and often threatened both myself and my sister. At one
stage he was threatening to kill himself with a knife. We finally got some assistance and
medication to calm him down. This was very distressing to Mum.
My sister returned home due to family and work commitments and I was left on my own. I
found this to be an extremely lonely time with little support except for short visits from
friends. I also missed being with my husband and three children. Nights were difficult as
Mum’s pain became hard to control and Dad became more confused. I had little sleep and
was exhausted.
Carer for wife with MND
From the carer’s perspective, there are several areas of angst that I am sure every carer feels:
carer burnout (there just aren’t enough hours in a day), the monetary crisis that besets
everyone and the anticipated grief, while at the same time trying to put on a good positive upbeat
and uncomplaining attitude. Respite for the carer (and therefore for the patient too) is
necessary lest one ends up being like a robot mechanically and in total fatigue, but performing
the duties demanded by the situation. I also wonder who is most affected by depression from
this disease, the carer or the patient.
The physical impact of caring
Carer for wife with MND
I was about learning something that you know only too well: being a carer is very hard.
Physically caring for my wife got hard very quickly. We had to learn new skills of lifting,
showering, dressing and feeding. We learned on the run, for virtually every day presented a
new challenge. I remember an incident on one morning that visually, at least, was like a scene
from a madcap movie. I lifted my wife out of bed and put her in the wheelchair. But her
muscles had stiffened and as I lent down to fix her feet on the footrests, she slid out of the
chair. That went on three or four times before I worked out how to handle it. I was seized by
panic at the time.
THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
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