While caring…

We were told by a counsellor that we had been grieving since day one because after diagnosis our old life was over and nothing would be the same again. At first we were surprised by this but thinking about it, it all made sense.

We felt fully supported by the 3 hospitals he was at - the Alfred, Bethlehem Palliative Care and Caulfield Hospital. They were always there for me too, as well as providing great care to Dave.

Our families were in England so there were lots of phone calls and emails. Mum said she would be on the next plane to stay with us but she was too ill, so that was really hard for all of us.

The first year…

When Dave was diagnosed I wasn't working so I had no job to go back to, not that I could have coped with work.

In the first year of being on my own I didn't put any pressures on myself and just did what I felt like. I have always enjoyed my own company and this meant I didn't do as much to get out as I could have done.

One thing that really helped is the fact that there was nothing and no one to blame. And with his determination and sense of humour, and the care and dedication of all the medical staff, I know nothing more could have been done. So there are no ‘what ifs’.

I've always been a writer and kept a diary through Dave's illness. I continued writing and to this day if I need to get something off my chest and don't have anyone to talk to, I just write it down and then tear it up. I've also "written" to people I feel let me down and again just tear it up but it feels good to write things you wouldn't say to them.

The second year and beyond…

Well before the second year a lot of people think you should be over it.

The reality for me was that the second year was a lot harder than the first, as reality sets in and you know he's not going to come through the front door. You know you have to start living again even though you don't want to and don't know how to.

I would like to have had more bereavement counselling as it was only for a year. A lot of problems arise later on, like learning how to deal with your new life.

I went to a support group for a few years and that was invaluable as we all had regular contact outside the group. And being able to talk to people who understood was comforting.

Almost two years to the day I started volunteering at the cancer council in their shop. This was perfect as it got me back into the real world in an "unthreatening way". While there I was given the opportunity to give talks about my experience as a carer and this helped so much. I gained so much confidence and I was helping others while helping myself. We were both so well looked after by all the hospital staff and I learned so much that I knew I had to share it.

I did several other volunteer jobs and then in 2018 I started at Peter Mac as a consumer representative. I now co facilitate ‘Carers Circle’ and can again share my knowledge with others.

I dread to think where I would be without volunteering.

Conclusion

Grief was nothing like I'd expected. I thought it would be overwhelming at first and then gradually ease off. I was surprised to find that I could laugh even in the early days but years later the sadness would hit out of nowhere. Often I felt like I was wearing "a cloak of despair" and was outside looking in.

The first 2 or 3 years were all about Dave and how he'd suffered, something he never talked about. How I wished I'd been more tolerant and not shouted at him. Then it became about me and how hard it was to carry on. I feel very cheated about the time we were denied together. He worked so hard so we could have a comfortable retirement and now he's not here to enjoy it, not having reached retirement age.

Part of me thinks "Let's have a good time and be passionate about it all" and part thinks "Why bother?"