I’ve blogged a lot on my personal blog about death and dying over the past few years; you can read about my father’s death, at home, with magnificent Hospice at Home support from Rowcroft Hospice, some thoughts for Hospice Care Week 2013, metaphor and death and cancer thoughts, about meeting Kate Granger at last year’s Dying Matters annual lecture (2014), about grief turbulence and many posts about the preventable death of Connor Sparrowhawk and the impact of the behaviour of the NHS Trust responsible on his family. This post is a short one to continue the discussion because we’re now in Dying Matters week 2015 – you can read more about it by looking up the #YODO hashtag (You only die once) or visiting Dying Matters website.
Just before Christmas a close friend contacted me to tell me that her Mum had been diagnosed with cholangiocarcinoma (bile duct cancer), a very rare cancer (less than 2k cases a year in the UK), yet also the same cancer that my Dad died from. Her principle concern was that her Mum may die very soon (she’s still alive and receiving treatment almost six months later but here were no guarantees) and what should they do. Interesting conundrum and not one I could readily answer, although over the next couple of days I created her an immediate survival pack. This pack contained practical things (a pen, a wallet full of change for hospital parking, a list of phone numbers), questions to give to her Mum about her end of life wishes, suggestions for memory cards or a memory box (again for her Mum to complete if she wished), and other essentials (hot chocolate, emergency chocolate ration, tissues and so on).
Yesterday was the 2015 Dying Matters annual lecture and I offered my concerns on twitter that we’re in danger of talking but not actually changing anything. In the conversation that followed the question was asked of what more can we do to speed up the pace of change? The ever brilliant Margaret McCartney offered these suggestions tonight:
Which got me wondering what more I could do, or what I have done, to support conversations around death and dying. To bring it full circle I decided I’d share the contents of the pack I made for my mate Penny, on the 22nd of December last year. When the rest of the world was neck deep in Christmas and presents and wrapping, I was scratching my head about what were the things that they could do or ask or record, if indeed her Mum could die very soon. I photographed the cards at the time and I’ve created a slideshare of them here:
I shared what I was up to on twitter at the time and had some helpful suggestions of questions to include (thank you David, Gerry, Fiona and Grannie Wise) the rest come from my head or experience and things I’ve picked up throughout the last few years.
I’d be really interested in what people think are missing from this set, and whether they think people would be interested in buying a pack to give as a gift (I thought they were an ideal 40th birthday present – yes really) if we were to get them designed up, or a book produced that people could fill in if they were interested. I’d also be interested if anyone knows of other similar resources because there’s no point duplicating what is already out there. I look forward to hearing from you all.