The hardest thing we have ever done - Palliative Care Australia

Carer for husband with Multiple Myeloma
He was going to bed when he had a fall, landing on the floor. No way I could lift him and I
thought of ringing the neighbour to help me. But I managed to get him onto low, then onto a
bigger box, then onto his feet. His back was a bit sore, so was mine… He spilled his bottle in
the bed so I had to do a load of washing. Nurse said empty bottle into a bucket each time… He
was walking from lounge to bathroom with Rollator, luckily I met him near hall as he became
very wobbly, I was able to support him with help of Rollator and get him to toilet. My back
was aching!
Carer for husband with Leukaemia
I cancelled my mammogram as I could not afford the petrol required to travel to the
appointment and the cost of seeing the doctor. I later found a lump in my breast and was
diagnosed with advanced breast cancer.
Carer for wife with brain tumour
It is my belief that the nature of the carer’s journey leads to a cumulative effect on stress
levels which is sometimes suppressed. In my own case, I believe that the stress of being a carer
resulted in the development of type 2 diabetes following my wife’s death.
Carer for son with brain tumour
I put on about 10 kilos over 2 years – I eat when stressed. Putting time and energy into
supporting my son’s spirits was very tiring emotionally – trying to be positive and supportive,
even when you are terrified, takes its toll.
The social impact of caring
Carer for husband with lung cancer
The effort of taking him out to make small purchases was enormous. Our checklist included
oxygen cylinders, oxygen conserving device, wheelchair, Roho cushion, mask as well as nasal
prongs, morphine, nasal spray, ventolin, mobile phone in case of breakdown, it seemed endless.
For a doctor’s appointment at 11.00am, we needed to make a start at 7.30am. The care was
constant. While for a couple of months, we were able to leave him at home alone for about
half an hour, as time went on, we all felt increasing discomfort leaving him alone and made
sure someone was there all the time. At this late stage, he really needed the three of us to
provide his care, if we were to remain ‘sane’.
Carer for husband with lung cancer
There is also more to do when your partner is ill, jobs which we used to share as well as caring
for him. I find my time to myself is very limited, even grocery shopping.
Carer for wife with MND
The daughters were helping mainly in getting their mother to bed. This was a two-person
operation that took as long as 45 minutes. I virtually had a form letter for their school,
explaining their absence from the early lessons.
Carer for husband with cancer of the bile duct
I did not leave the house except to go to the local shop for ? an hour. I was worried about
going too far because he was so far out of it, he would have been unable to help himself in an
emergency. I wasn’t coping very well with the long hours being confined to the house and I
finally approached palliative care for respite. This was offered as either moving my husband to
a hostel for the week or alternatively they would send a carer to the house once a week for the
afternoon. He wasn’t happy about moving out to a hostel but agreed to a visitor sitting in for
the afternoon. The first time this happened I went to the movies. I think he was asleep most of
the time I was gone.
42 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004