The hardest thing we have ever done - Palliative Care Australia

The need for support services
Carer for both parents with cancer
There needs to be more practical support. I was given the equipment and left to work it out on
my own. I had to work out levels and doses of medication. Need more support from people who
have been in the situation themselves and not got their information out of a book. There should
be a book for carers, what sorts of easy to eat meals to prepare, a list of things to buy ie stable
tables, seats for bathrooms, non-spill cups. Things that make life easier for both patient and
carer. Especially when you live in the country often things are hard to obtain.
Carer for mother with renal cancer
I also believe the General Practitioner has a vital role to play in the total support team.
Unfortunately I felt my mother’s GP of 40 years let her down badly. Palliative care was an area
in which it appeared he had little knowledge of and interest in, and was uncomfortable with.
He would leave it to the nurses whenever possible, and breeze in and out, with a lightheartedness
that was not always appropriate.
Carer for mother with renal cancer
I cannot imagine how difficult it would have been without the wonderful support from a grief
counsellor and a general practitioner (both of whom were female) and a bereavement group,
which I only attended on two occasions.
Carer for husband with prostate cancer
I would like to comment on the lack of adequate support services (hospice, palliative care
wards), counseling services available for patient and carer, services to improve the quality of
life (eg meditation, art therapy and aromatherapy), respite care, home visits by health care
professionals particularly on weekends, reliable communication and follow-up from support
services, communication between all health care professionals.
Carer for father with prostate cancer
I feel many doctors, specialists etc don’t explain enough to patients and don’t explain what
options are available as to treatments and where these treatments can be given (ie in centres
closer to the rural area than Sydney is).
We had a palliative care lady call on us a couple of times and this irritated Dad. He didn’t need
someone to come in and tell him (more than once) to “get his affairs in order”. We needed to
know more of who to contact for assistance, what to do after the death, who to call first etc.
Fortunately a friend was an RN and she was with us soon after Dad died and helped
with everything.
Carer for husband with cancer of the bile duct
At times I found the students to be a bit intrusive in a teaching hospital. I thought it
unnecessary for several Dieticians to be calling into the room to plan his meals. I was
concerned about this after a while and so I requested no students.
But once again things had not been properly explained and I was expecting the Nurse to arrive
Saturday night for his treatment. This didn’t happen and I had to ring around trying to get
instruction on his medication as it seemed to be different to what I had been told at the
teaching hospital
Looking back after 3 years I now realise that probably respite care was just starting here in
Australia. And I think that had it been offered earlier I wouldn’t have felt so isolated.
There does not appear to be any follow up on the grieving family after a death and it is only
through friends and the Urban Ministry Network that I have received any counselling. I now
feel better and have more acceptance about it and after three years my nightmares seem to
have stopped.
46 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004