The hardest thing we have ever done - Palliative Care Australia

The impact of caring on work opportunities
Carer for husband with lung cancer
My first daughter left her job in Sydney to become a carer for her father as we lived in the
country. She was not eligible for the Carer’s Allowance and Benefit but received Newstart
Allowance after some delay… My second daughter interrupted her university degree to become
a carer and lost on her Youth Allowance… I was not allowed to take all my sick leave at work
and had to exhaust my extended leave. There was no flexibility in my workplace despite
receiving a brochure on ‘Family Friendly Workplaces’… I was away from home for many weeks
while husband was having his treatment in Sydney, which made it impossible for me to work
part-time… Every time the mobile phone rang at work, my heart would sink – what had
happened at home?
Carer for mother with cancer
I strongly believe the caring experience should be available to family members who wish to
care for a loved one. It is interesting that there is a push for paid maternity leave, but never a
mention of paid leave for caring for parents or other loved ones who are vulnerable and unable
to cope without such help. Unfortunately our society seems to have little respect for its elderly
and it is more acceptable to put them into hospitals and nursing homes than to care for them
in their own homes.
Carer for son with bowel cancer
I am sure that more people would be able to die at home if some provision was made for carers
who work, and have to take leave without pay, could be given some financial support. I feel
sure that if this provision was made, more people would choose to die at home.
Carer for mother with MDS and father with dementia
I had leave from work at numerous times during my mum’s illness and when she passed away I
had no sick leave, holidays or long service leave left. The leave that I took after she died was
all unpaid.
Carer for wife with MND
The carer’s days just become longer and longer as the carer takes over more and more of those
responsibilities that were once that of the patient, plus assisting the patient. Gradually
though, full-time work is impossible to continue and thus only part-time work may be
conducted usually from a home office aided by good communications and computers… As the
MND progresses and care demands rise, at each stage income decreases whilst at the same
time, costs and expenses rise. Savings are soon enough used up and assets too are sold and the
income directed to alleviate the impact of rising costs… The local Church, seeing our plight,
made a most welcome grant… Finally, and in my case a very personally demoralising aspect,
we were forced to become pensioners as my availability to perform part-time work became
less and less as my care became more than full-time.
THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
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