The hardest thing we have ever done - Palliative Care Australia

added costs are in excess of $6,000-$10,000 per year over and above normal household and
living expenses. Medical costs related to my wife’s pneumonia episode alone, after all
Medicare and MBF payments (and the dust is still settling) totalled more than $6,000 out of
pocket, thus adding crippling costs and certainly stress upon both the MND patient and
the carer.
From a financial viewpoint though there is no solution available. In our case, we were forced
to take a loan against the asset of our family home to generate cash to live on and pay the
increasing costs, but of course this means that with my wife’s passing, I will be forced to sell
up and move away to simply relieve the debt.
Seldom a moment of the night-time when one is awake, disturbed by the irregular breathing
of your spouse, is the matter of coverage of costs far from one’s mind. On a USA Internet
website among the many I have visited searching for MND information, it is stated that the
MND condition costs about $200,000 per year to be able to cope adequately. When you
consider all those provisions of equipment by the MND Association, the subsidised 3rd party
care from Community Care organisations, the value attributed to the MND Clinic additional
out of pocket costs for hire of equipment – I think the total costs of $200,000 per year are
about right.
The impact of caring in rural areas
Carer for husband with lung cancer
My husband required two oxygen concentrators to supply him with enough oxygen and was
lying in an electric bed which he relied upon to sit him up to get out of bed. The stress of
electricity blackouts in the country without warning was always present, up to 12 hours at a
time, despite as palliative family having registered with the electricity supplier to obtain
rebate for electricity. Surely an updated database with personal warnings was not too much
to ask.
Having come from a wonderful rehab unit in the city, by contrast the facilities in the country
rehab unit were appalling and staff morale seemed low and the experience was depressing. My
husband could not receive the drip at home. We went to the ‘day procedures’ which did not
have a bed to lie on, just a very hard recliner chair. There was a feeling of “how dare you ask
for a bed?”
Carer for father with prostate cancer
Country people have to go away from their homes to see specialists, have tests, operations and
treatments. It is very expensive and not often do we have people to stay with, so it is very
taxing on the patients, their families and their pockets.
Our biggest problem was getting the large quantities of morphine from the chemist. A pump
was connected to administer the morphine at regular intervals over a 24 hr period plus we
were taught to administer extra morphine as required. We would go to the chemist in the
morning and most times they would have to get what was required from chemists in larger
regional centres and deliver to the house later in the day, sometimes after dark.
Carer for husband with lung cancer
Everyone needs support when there is a serious illness especially country people who have the
added expense of travelling and the upheaval of leaving their own home and all that
is familiar.
THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
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