The hardest thing we have ever done - Palliative Care Australia

The financial impact of caring
Carer for husband with lung cancer
As my husband had less than 12 months to live, doctors were not prepared to place him on a
‘terminal account’ for his oxygen needs, stating that to be ‘terminal’ you should only live three
months. We were forced to buy two oxygen concentrators at a total cost of $6,000. My
husband needed equipment that were not available in country loan pools such as Roho
mattress and wheelchair seat, electric hi-lo bed, special padded commode/bathseat with back,
high backed manual wheelchair and electric wheelchair… The emotional stress of purchasing
all these items to enable us to return home in the country was huge and I spent three weeks in
Sydney running around purchasing all the items from various suppliers.
Carer for both parents with cancer
I gave up a successful well paid job (to look after the two parents who died of cancer). The
Carers’ pension is way too low. If you have financial commitments you can’t live on the
pension. The person who is ill has enough to worry about without your financial situation…
Maintaining the garden, washing, ironing or housework came out of my pension. I wanted to
keep life as normal as possible and some days I just could not do it all, so I’d pay someone to
do it. Needless to say I used up all my savings.
Carer of mother with renal cancer
I would have loved to have someone come in, for a couple of hours a day, to help with the
dishes, washing, vacuuming, ironing or preparing a meal. I felt this was certainly too costly to
be able to afford. However, apparently Mum’s health cover did indeed allow such an
opportunity - but this was something the health fund did not advertise, and we only found out
about it too late. It was a great disappointment to me that Mum, who had always paid for top
cover to her health fund, did not realise this opportunity, which would have alleviated the
stress for me considerably, and allowed me to spend more time with her as a daughter and less
as a housemaid!
Carer for mother with renal cancer
I was incredibly grateful that Centrelink provided me with a Bereavement payment which
allowed me time before returning to work, but this period of readjustment was lengthy and
isolating in that very few people could understand what I was going through.
Carer for wife with MND
If the Government is half way serious about encouraging home care for those with a serious
disability and/or terminal illness rather than impose increased demands upon a public hospital
system already under considerable stress, then I believe it’s time to revisit the Australian tax
laws to enable the ATO to provide fair and reasonable tax relief for those who make a genuine
effort at caring for their loved ones at home for as long as is possible. (The carer undertook a
major renovation of the bathroom into a disabled shower/wet room, made necessary to meet
the home care standards required for his wife who is terminally ill and seriously disabled
requiring 24-hour care. The ATO did not allow the carer to claim the renovation costs of
$14,000 as a tax-deductible item).
Carer for wife with MND
I am sure every MND family is caught in a cash-squeeze. Some income arises from the pension
kicking in (at 1/2 rate as I’m expected to earn). But aside from the low cost drugs when being a
pensioner, so much of the daily/monthly costs still fall between the cracks provided by private
health insurance, the public health system (Medicare) and support from the over-stretched
organisations such as the MND Association and the Community Care providers. Costs falling
through the cracks are those related to co-payments for Community Services, hire of Bipap
ventilation and medications, all in addition to normal costs of running a household. These
44 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004