My introduction to palliative care
In 2006 my husband Darcy became ill and was given the run around for four months – hospitals, doctors, etc. Finally, he went into hospital and had all the tests done, only to find he had prostate cancer that had already metastasized, which was a big blow to us. He was given a very short time to live – six months from diagnosis to death. In the last month of his life at home Eastern Palliative Care (EPC) came on board. To him and particularly me, EPC were like guardian angels.
I didn’t even know EPC existed before that and I think that most people don’t. If you have no cause to need their services, you don’t find out.
How palliative care was able to help
EPC helped organised the house and arranged for a hospital bed, the house was like a hospital. Then, of course, there was his medication. I am not a nurse, and the fact that I could ring someone twenty-four hours a day if I wanted, eased that pain of worrying. EPC were wonderful!
They were absolutely marvellous. It was only a very short time, maybe three weeks, until my husband died, but they made that last three weeks easier.
Two days before he died EPC suggested he went in to Ringwood Private Hospital because they knew that was what we both needed. ‘You can spend some quality time together, rather than this patient time’, they said. It made it so much easier for both of us because he would worry about me and I would worry about him.
A sense of needing something to do
After Darcy died I had to go through the process of dealing with Wills, probate and all those things, which was a nightmare. I had family for support, but a lot of things only I could do. Banks, VicRoads, people like that, are not trained in empathy, they go by the book and have no empathy for what you’re going through. I now know from my work as a volunteer in the Bereavement Information Sessions that others experience the same thing.
The worst thing you can do when you are grieving is bottle it all up, you have to talk about it.
At the time, I didn’t want to hear it, but as things settled down, I thought to myself, ‘Well, I can either lie in bed all day – because that’s the feeling you get – and do nothing, there’s no incentive – or I’ll do something.’
One of the first things I did was enrol myself in a pastel art class and that helped. I’d always loved to draw.
Now I was meeting other people, talking, not about me, just listening to what was going on in the world, which you tend to forget about in grief.
Then I thought I’d really like to do something with EPC. ‘I’ll ring them up and see if they’ve got a volunteer program.’
I spoke to a lady called Margaret and she asked me in for an interview. They said, ‘We are starting our biography service, it’s very new, and we haven’t even done a biography yet. But we have a client who has hand written a book, five hundred pages, back to back, (it only got up to 1963!) Would you be interested in typing it up? We will put it together properly with photos.’
I said, ‘Yes, I’ll do that!’ so I got it just after Christmas and of course it took quite a long time to do.
I have learned and done things I never thought I could
I also joined one of the training groups and came on as an official EPC volunteer. They were doing more biographies and a lot of the people during that time were not computer literate, so I was paired with some volunteers to assist them with typing up the stories. My working background was secretarial – shorthand and typing, so I was quite happy to do all that. As time went on, I also did transport if the regulars couldn’t do it, and a couple of home support visits.
I can’t speak highly enough of the relief you get from contact with EPC. It keeps me in the world. I come into the office a lot and that keeps me up to date with things. When I started I had a basic knowledge of computers, and I don’t say I know everything now, but I know so much more due to the varied things I do.
Transcribing for the biographers is a great privilege and very rewarding to me and and I love mentoring new trainees.
I hope I am able to pass on things I have learned and coped with over the years. I have learned and done things I never thought I could.