Sunday, May 08, 2016

Bereavement 1: Marking the Journey

As I said a while ago in a previous post, I've had mixed feelings over blogging about being alongside someone with cancer and now the experience of bereavement. Debbie's blog was very much about her story, and I didn't feel I had a lot to add in those weeks. However, since Debbie died I've been wanting to get a few ideas and feelings logged somewhere, so I'm going to post a few reflections. I have dealt with hundreds of bereaved people, but inevitably you are always at a distance. Writing about it first-hand is a very different project.

I'm very conscious that posts like this could become quite self-indulgent, and it's true that it will help me to clarify my own mind and get things out of my system. However, I'm also aware that my familiarity with funerals and other people's bereavements gives me a perspective that could be helpful to others. So, I hope these next posts help some people; if they don't, that's absolutely fine. I'll blog about football or something before too long!

A couple of days ago on the the BBC Today programme, there was a discussion about how many people die in hospital, when this was probably not the outcome that they or their relatives would have wanted. In a new book, Dr Seamus O'Mahony argued that many of those who die in hospital do so over-medicalised and without having made any kind of advance care plan. Obviously there will always be people who die in hospital, due to acute or sudden injury or illness, but many of us don't realise there are choices we can make. The key issue is getting people talking about it, because doing so brings out so many of our fears.

At a very early stage in the diagnosis of Debbie's cancer, we knew, at the very least, that her life was in grave danger and the possibility of curative treatment was, as she put it, a fragile hope. Not only did Debs blog about those issues, but she also did a lot to help us to anticipate what her dying would mean for us, and how we might all best prepare for it. Initially she wrote poems and letters for people, wrote an initial draft of her funeral (more about this in a future post) and talked very openly about letting go of some of her hopes for the future. Paradoxically as she did that, it seemed clear to me that she became more and more content and appreciative of what she had experienced in the past and the life she was enjoying in the present.

Having had some involvement at our local hospice as a minister, Debbie knew a little about it. It always struck us as a place which was peaceful, caring, and concerned with the whole person and their family. So we asked questions about what resources the hospice could offer, and how people came to be referred there. If, as seemed likely, her illness was terminal, then we both wanted to avoid the latter part of Debbie's life to be dominated by an endless round of interventions, and Debs was also clear she had no desire to die at home, especially if that meant our home would be a constant flow of nurses and visitors and our bedroom would look like a hospital ward. If possible, we agreed the hospice would be the best place for that final care of both her and us - and so it proved to be. Further down the line, Debbie completed a document where she explained her choices.

The critical issue is to get the conversation started. This coming week is the 2016 Awareness Week for the Dying Matters coalition, titled The Big Conversation. It's to encourage us all to start talking, whether there is a pressing reason to or not.

There are also other resources to get the conversation going, such as the Church of England resource Gravetalk, and a local initiative called My Last Orders.

Of course, you don't need any of those to talk about death and dying, but they can help to break the ice and get the conversation started. Whatever route you take, I can vouch for the fact that talking things through in advance is hugely worthwhile. Some people die suddenly, leaving relatives wondering what their loved one wanted; others reach a point in their illness where they can no longer communicate their wishes to those they will leave behind. Our experience was that talking it all through at an early stage meant there were no major questions left unresolved for us. We knew what Debbie wanted and felt, so we could work with her to achieve that, insofar as it was possible. What's more, we could get on with getting the most out of the time we had left. In the event, everything worked out according to her wishes, and that makes a big difference to how we are all feeling now.

So start the conversation. As the poster says, talking about dying won't make it happen.


Helena Durham said...

Thanks for this, Mike. As you've experienced, when there is the chance for such conversations, they need not be feared and are of such value. At an event about dementia I was part of recently, a speaker asked the (mostly older than me) audience to put their hands up if they had made a will. Most but not all did. Then he asked for a show of hands of those who had made Lasting Powers of Attorney. Very few had. He concluded by saying that if the only thing people took away from the day was to do those two things, he had succeeded. We never know what will take away our capacity, so best to have those conversations, make those wishes known when there is time. It does, as you say, make it easier for our loved ones.

Brian Robinson said...

I found that the first few weeks after Hazel died, I was totally focussed on the organisational stuff. Informing pension companies, paying funeral costs, changing over the names on the phone bills etc was so time comsuming, so logical, it took over my mind to hide the grief. But little things brought out the emotions. It wasn't physical things like clothes and possessions. It was more emotional parts of my brain being stimulated by music. Almost any Beatles song would have me in floods of tears. Everyone around me was so supportive, both during her illness and afterwards and I felt it was only polite to share my feelings when people asked, even if, sometimes I'd rather not answer. But sometimes I think you have to say no. It took me fully four months to even face the fact that I had a life ahead of me without the person I desperately wanted to be there. Hope these comments help and stimulate some debate.

Steve Tilley said...

One of the conversations we are having is the extent to which a funeral follows the wishes of the person who has died or the people who are left. Who chooses how I will be remembered? In life I have no control over your response to me; do I want it in death? Thanks for raising it.

Mike Peatman said...

Good question

Mike Peatman said...
This comment has been removed by the author.
Claire Askew said...

Thank you for your words and insight Mike. Thinking of you, Ellie and Jono.

Mike Peatman said...

Steve - that's why it needs to be a discussion, not a set of instructions filed away privately.

Mike Peatman said...

Sorry, put reply below

AlBrunton said...

Mike, thank you.

A thoughtful and intelligent reflection on the place where one day we will all be but few of us want to think about.

Continuing to remember you in my prayers.