Marie curie “ whatever you call it” campaign, your thoughts welcome.

Hi Jane,

watched the video, and it is a very light way to address the issue. Maybe as a way to at least raise the topic it might work . The use of euphemisms is an issue which I have always hated. People don't talk about "death" and "dying" and instead use all the cliches mentioned, and "passing" etc. I like plain english and plain speaking. Too often the words we use are to diminish the significance of a subject. I worked in mental health for a long time, and  hated the horrible tendency in our language to discuss suicidal thoughts as " thinking of doing something silly" ( often by people who should have known better) - how insulting to demean someone's desperate state of mind to that! Yes I get that people are often scared to say something which may upset someone, but in matters of life and death don't we need to be honest?

There was a movement a few years ago to have "Death Cafes" where people from all walks of life came to talk about death and have coffee and cake, and share their perspectives, fears, experiences. I am sure the movement is still going, as it proved immensely popular. We all know we face death - some of us sooner than others. Death really is the last taboo, and we are pre programmed, it would seem, to act as if we won't die, whilst accepting that others will ( recent article in the Guardian by a neuroscientist about how our brains defend us against the recognition of our own mortality). Why do so many people not make wills ( huge percentage of the Uk population apparently), often because they are scared to contemplate their own demise, and fear by making the will they are somehow making it more likely.

I know that people find it hard to hear that I have an ultimately fatal disease, and so prefer to take an upbeat and shallow way of interacting. Sometimes that suits me, but I also want people who are able to "look into the abyss" with me when I need it, and if people are scared to say the words, then what hope is there for any of us who do need deep, honest connection.

Buddhist practise encourages contemplation of one's own death and the impermanence of all things as a way to enlightenment. No bad thing

Sorry, that is my two pennies worth, but I am an opinionated so and so! Anyone else?

Dear ownedbystaffies, I agree absolutely with everything you have written in your post. When I was diagnosed it soon became clear that there was only going to be one outcome and I made a conscious decision to accept the situation, my problem has been getting everyone else to a knowledge it. When I’m talking to anyone involved with palliative care or the hospice the subject of death is not a problem, but I find myself minimising my illness with other people as they find it impossible to cope with the reality of my life. I don’t know whether this campaign will improve matters or not, but it’s a brave effort from people who do a lot of good work, and we have to start somewhere to break down barriers.

best wishes 

jane

Hi

I completely agree with you, ownedbystaffies. In theory and in general, that is. I I am comfortable talking about death and dying and have had some deep conversations with friends who have opened up about their experiences of the deaths of their parents and fears about their parents dying. 

But when it comes to talking about me and my death, I do shy away from using the actual words death, dying and dead.

I have had to hold numerous conversations about my death with different people as I am a single mum with teenage children. I have had to talk to my kids about what they want to happen to them and where they want to live and in turn to my family about those ideas and plans. I’ve had to ask friends and family to act as executors of my will, as trustees for the kids’ inheritance, to act as attorneys in orders for Lasting Power of Attorney. I’ve asked a friend to minister at my funeral.

Most recently I have had to talk to my close people about the advice from my doctor to get my affairs in order as I am at risk of a sudden and potentially catastrophic pulmonary embolism.

These have been difficult and heartbreaking but necessary discussions and I have noticed the language I use. I will say “when I’m gone, where do you want to live....”. I will say “when it all goes tits up, I need you to...”. I will say “when the time comes, I want...”. I very rarely say “when I’m dead”. 

I think it’s just too hard for my loved ones to hear. I don’t think I actually mind saying it but I don’t think they can bear to hear it. I apologise frequently that I need to talk about “this” (avoiding saying “dying”) and I point out that I’m not being morbid, just practical, and while I hope for the best I have to prepare for the worst. They agree. We all try not to cry. 

I also notice that I avoid using the word death in messages of condolence on this site. I will say that I’m very sorry for your loss. Again, this is out of respect for the feelings of the person I’m talking to. 

As for the Marie Curie campaign, I am not sure whether it will achieve its aim. They are right that we need to talk about death and dying. The number of conversations I have had with friends who didn’t know what their parents wanted and the arguments and heartbreak this causes is testament to that. In general I am all for calling a spade a spade. In the generality of talking about one’s theoretical death at some point in the distant future, I’m all for it. But in the personal moment of talking about my own possibly quite near death, I prefer to be tangential. It’s just too hard and it feels unkind and almost brutal to be too direct. l

xx

Dear daloni, thank you for your contribution, I think you have explained really well what a balancing act it is to do all the practical stuff associated with a life limiting Illness and not inadvertently upsetting people who are close to you at the same time. People attitudes to talking about the D word ! Is often a reflection of their own deep seated fears and not related to the person with the illness so I try hard not to take people’s reluctance to talk about the issue personally but want to be part of the movement to change things, I saw a interview with the cricket player Andrew Strauss yesterday who’s wife died from lung cancer who supports more openness on the topic as it was so helpful to him and his children that his wife was able to talk freely about what she wanted as her disease progressed. Im sure anyone who visits this part of the forum will find the words of wisdom you all provide inspiring and comforting.

best wishes 

jane

 I've been thinking about what you said.

When I qualified as a nurse my first ward was a children's Oncology, Haematology and Acute Medical ward.

We had to be honest with even the youngest children about what was happening to them in order for them to trust us. The language was crucial and the children were usually very matter of fact, the parents and children were gently given age appropriate language to use so that they could keep talking as a family, along with other tools such as drawing etc so that they could express their fears.

So it was a shock to look after adults in the Cancer Hospital who said they were only there because the general hospital had no beds,  or who presented for the first time with fulminating wounds. One of the Consultants told his patients they had cancer but the other only ever used the word polyp to explain major surgery including formation of stomas. Guess which group did better post op.

I think we've come a long way since those days, but this is the last taboo.

I've realised that although I'm comfortable talking about death and dying it's important to know your audience. I've got it wrong a couple of times. I find the euphemisms frustrating but a necessary evil. But don't mention crossing a rainbow bridge....

During a walk along the beach one of my friends shouted to me and then kicked a bucket she'd found. I laughed like a drain, but it was less than 48 hours after my incurable diagnosis and others I told the story to were horrified.

If this lighthearted campaign gets people to think and plan ahead so that they don't leave their families adrift at such a difficult time then I'm all for it.

I'm sure it's not aimed at anyone who's in the throes of a terminal illness. xx

Dear tinalay, thank you for your illuminating post. I can relate to your testimony about even doctors being reluctant to spell it out to their patients. My cancer doctor has never directly discussed the D word with me but that’s because he knows I have done all the research on my condition myself, we have a understanding ! I prefer to talk to my palliative care doctor as its easier to speak freely without worrying about shocking him with my rather matter of fact approach to life, which is not everyone’s cup of tea ! my husband and I have developed a line in dark humour to release the tension in times of stress that I’m sure others would find quite shocking but sometimes the circumstances I find myself in are surreal and nothing else will suffice. Keep on keeping on

jane

I have really appreciated everyone's thoughts. I completely get your position Daloni, and appreciate that there are always nuances when it comes to talking about death, and the other person's sensitivities have to be acknowledged and worked around. We are all doing the best we can in the horrible situations in which we find ourselves. I suppose the wider point is that if everyone in our death denying culture could feel more comfortable talking about death and dying, then we would have more chance of being able to open up honestly about our fears.

I read a poem recently and this line struck me as being very relevant to this discussion, although it applies to so many of life's difficulties :

" I want to know if you can sit with pain, mine or your own,

   without moving to hide it or fade it or fix it"                      (  Oriah Mountain Dreamer )

Crossing the rainbow bridge? Seriously? People say that? Presumably on the back of a unicorn. 

I love your bucket kicking story. Now that’s what I call a friend 

xx

They really do say it: it seems to be very prevalent in animal rescue circles. As a dog lover and supporter of a local dog rescue charity, it does make me wince. My own oldest staffie died last week. I havent mentioned it to anyone who might send me a "rainbow bridge" message as I might vomit.

That was a fantastic post, ownedbystaffies