Peter's* Story - a patient journey with caring@home resources

Peter* was a 65-year-old man from NSW and the following story was told by his wife of 46 years. Together they had five children and 11 grandchildren.

Peter’s problems began in 2000 when he developed an acquired brain injury which caused a bad fall. From then on, he developed several other serious medical issues. Things got worse for Peter when he broke his leg and ended up in hospital for two weeks. Once home, his GP talked to me about advance care planning and made a referral to the community nursing team for some home nursing assistance.

When the community nursing team came and told me that the palliative care team would be visiting because Peter’s health was failing, I was shocked. Although I could see he was very unwell, he had always bounced back previously,

I communicated with the nurses that Peter did not like hospitals, therefore I would be looking after him at home.

The palliative care nurses visited Peter and I at home. They told us about the care Peter would receive and the services available to me to help support him at home, which included the caring@home resources.

The nurses educated my daughter and I with the caring@home resources, which taught us how to draw up and administer medicines for breakthrough symptoms, if Peter needed it. We found the package useful, the Carers’ Handbook was informative, we could refer to the Medicines Diary to check and record everything. Everything was at hand in the carers package box. The challenging part was wondering if he was in pain or not after we had given breakthrough symptom medicine.

I was called first thing every morning by the palliative care team or community nurses to see how the night had been. I was called last thing at the end of the day to make sure Peter was ok. The medicines he was prescribed changed as he deteriorated, as he became quite unsettled. The nurse consulted with a specialist palliative care doctor after speaking with me and communicating what she thought was happening with Peter. Peter ran his own race with his medications, which he took himself until the last stage of his life, when I assisted him.

I am very grateful for the exceptional care Peter received. The nurses went above and beyond not only with the care he received but also the compassion which was shown to our family. The care was personalised to meet Peter’s needs. He was sometimes difficult, but the palliative care team got around that by showing compassion towards him.

I felt very comfortable caring for Peter at home. Whilst I had cared for him since 2000, this was different. It was what Peter would have wanted for himself, but he could never speak about dying and then at the end he was past being able to talk. Being at home, all our family could come and go, the grandkids, the dogs on the bed with him, it was really personalised.

Being able to care for my husband at home with palliative care nursing and medical support was exceptional. 

*Name changed to protect patient and family privacy.