National Palliative Care Week 21-28 May 2017
This year the theme is “You matter. Your care matters, Palliative care can make a difference.”
The story of Maria and Glenda is a great example of just how palliative care can make a difference. It starts when Maria’s husband was first diagnosed and the support continues after his death and demonstrates the importance of our volunteers.
Group support helpful with loss and grief
Maria met volunteer Glenda when she joined a group to help Maria and husband Phons deal with his life-limiting illness. After Phons had died, Glenda created a new group to support Maria and the other participants with their bereavement.
I came to know the palliative care service when my husband Phons was in the hospital. That’s when they started with the life-limiting illness meetings where I met Glenda. Glenda was always ready with a cup of tea. Phons and I went to the meetings together. I always looked on the bright side, because at least Phons was there. I thought he’d always be there because he was going to go on forever.
The group meetings helped me a lot. I thought I was the only one, but then I met other people and I saw that they were going through the same thing, or even worse. The group changed what we talked about at home, but death never came up. Dying never came up. It wasn’t that we didn’t want to know. I knew in the back of my mind that it was going to happen, but I didn’t want to admit it.
In the end, you wonder if it is ever going to stop, but once it stops, you feel guilty. When you have a husband or partner, you always have someone to fall back on, but when you’re on your own, everything is left to you. But then he wasn’t there anymore. Phons died a year ago. You’ve got to take it in your stride.
The first time I realised that Phons was going to die was in the hospital. He took his rings off, and his watch, and he gave them to me and he said, ‘Give those to somebody. I don’t need them anymore. I want to die.’ That was the hardest thing for me. And he did die, but the palliative care staff were there to support me.
On the bad days, I try to keep myself busy. I look at it this way; that’s life and we’re all going to die. The day you’re born you make yourself ready to go out the other side. It doesn’t matter who it is, and I’ve had a good life.
Recently I did a computer course that was fun, and I’m going to do a drawing class soon. I have a dog and I wouldn’t know what to do without Jessie. I tell her everything.
I first met Maria when we started a group to support patients and carers dealing with life-limiting illness. I was the support person at the meetings for the six months that it ran.
The first meeting was very difficult for everyone who was there. Phons and Maria were very much part of the group – they came every time and were great contributors and were able to lighten up the conversations when needed. The meetings were a really safe place where they could openly talk, and cry.
Soon after this group finished, we organised a new support group on bereavement and we met every month for six months. This group was at a different point in their grief than the first group. There was always a trained facilitator, and I was there as a volunteer so there were always two of us to support the group. The group members decided when and where they wanted to meet, and each session they’d tell us what they wanted to talk about. We’d give them some of the resources and information, and they’d run with it.
We live in a small town and you run into people in the supermarket. I’d hear ‘I don’t feel like I need that group anymore’, and then I’d know we’d been a success.
I thought I might be bored when I thought my children grew up, and I really wanted to try volunteering. I’d worked as a nurse, but I found I enjoyed it more if I stayed back after work to be with the patients and their families. So I did the volunteer training here in Wangaratta. My first client was the most difficult client I’ve had in 15 years, but I was very well supported and it was great training. That set the precedent; if I can do that, I realised that I could do anything.
As a volunteer, I support various palliative care groups, and I also do respite with palliative care clients. I like helping even if it’s only to give someone a bit of respite when it can be hard to get out of the house.
I have learnt a huge amount from the training. I feel like I’m a much better person. I look at all the mistakes I’ve made. I’ve learnt what to do in homes. I’m a much better mum than I was and I’m now a wonderful grandmother as a result. I’m much less judgmental. I’m far more relaxed about the little stuff; I just don’t sweat it. I also have a much better appreciation of what I have.
Most of the time volunteering is a very positive experience. I get more out of it than I put in. It’s certainly made me appreciate life more, and I don’t even care about getting old anymore. I feel it has helped me enormously. Everybody wins.
The palliative care program at Northeast Health Wangaratta is free and funded by the Victorian Government.