What was it like caring for your dad?

Dad was diagnosed with metastatic prostate cancer and lived well for two years until his condition became terminal.  I cared for him for the 6 weeks from that diagnosis until his death. We lived in Port Pirie, South Australia and although I was a trained and experienced palliative care nurse, I was exhausted by being the sole carer for my dad. I remember feeling a heavy sense of impending isolation as 4pm on a Friday drew close because I knew that I was on my own from then and that no professional help were coming again until Monday morning.

As a nurse, I felt confident to provide Dad’s practical care but caring for Dad 24 hours a day was hard. The community nurses would come every day in the last few weeks of Dad’s life and bathe him as it became difficult for me to move him. I often asked them: ‘does he look he worse to you?’. I was wanting validation and reassurance.

I remember feeling quite alone at times. People tended to stay away; I wasn’t sure if it was because they thought I was okay because I was a palliative care nurse, but I would’ve liked people to come and just hang out with me.

Who helped you to provide care to your dad?

I had some help from some of my nursing colleagues that would come at times, particularly on a Saturday so I could watch my son play soccer. This was really important. I used a respite service once and smile when I remember the note left for me on the table that had recorded Dad’s respiratory and heart rates. I remember wondering what the worker thought they might do for a terminally ill man if they were not within range.  My partner, who did not live with me, helped out regularly. I tried not to burden my 16-year-old son who was still living with me, but he too had to help, lifting Dad from the floor back into bed one time when he fell. My daughter and sister flew in from interstate to spend time with us which was a great emotional support.

What were the most challenging times?

The hardest time was when Dad was sent to a hospital in Adelaide to have stents inserted for his blocked kidneys. They started doing additional tests for medical issues they identified while he was in hospital not related to his prostate cancer. They were taking blood several times a day, giving lots of new medications and over-medicating him with morphine. I remember Dad telling me he was sick of them poking him and of them giving him too many pills. He ended up very confused. I had to really advocate for him by showing them his Advanced Care Directive and telling them to stop with all the tests and extra medication. They didn’t listen to me. I had to call a urologist who I knew professionally who had consulted with Dad back in our hometown and get him to advocate for us to get home. It was very difficult. What is the point of having an ACD if the medical staff won’t respect or follow it?

I finally managed to get Dad home and he had the biggest smile from ear to ear on his face when he arrived at the door on the ambulance bed. I will never forget it. Maybe the care wasn’t strictly ‘as good’ as it would have been in a hospital, but he was happy at home and he died where he wanted to die.

What were the last few days like for you caring for your dad at home?

Although I saw the signs that Dad was dying, I really wanted someone else to have eyes on him and tell me that he was close to dying. The GP, while very supportive over the phone, didn’t come to visit Dad at any time. I really would have liked him to.

It got to a point where I couldn’t move him to turn him. The choice was to keep him at home where he wanted to die and risk developing pressure sores, or take him to hospital. You don’t want people to say afterwards: “You should have done…” – but he wanted to be at home and there came a point where I knew there were only days left. That’s when I decided pressure sores were not as important as supporting him to stay at home.

Dad’s death was non-eventful. I left him tucked up in bed in the back room. He was close to dying, not conscious. I went to bed and woke about 2am and went to check on him. He had died. I sat with him for a bit, kissed him, and then went back to bed. I called the doctor and funeral director in the morning to come and collect him.

Dad was 77 years old and a very practical man. He didn’t shed a tear, even though he knew he was dying. We got to laugh together and tell stories. I felt proud afterwards that I cared for him and he died the way he wanted. I feel sad that my kids no longer have their granddad, and I miss him, but I don’t feel there was anything traumatic about it. Grief is normal. I carried his ashes around for a long time. He is now in the flowerpot at the front gate and I can say hello or talk to him when I walk past.

Author:

Nicola Champion - Carer Perspecitve