Plus ca change, plus c’est la meme chose

When someone is the same age as me and dying, their situation has a heartache inducing fascination for me, a kind of ghost visiting from another realm telling me about time running out and asking me what I’m doing with my life. This has been the case no matter what age I have been, its not about the actual age I am, its about the reality of spending time with a person of my age who is dying and, more importantly, knows they are dying. I am curious about the experience, the emotional response and the emotional journey, the reflections and the regret and the making peace with the situation or, conversely, fighting the situation and screaming in rage at god or the universe or whatever you believe has put you in the situation you find yourself in.

This is different to my spending time with people who are younger than me and are dying, this causes a sadness which combines a maternal feeling of love and a sense of injustice. When I’m working with older people I tend to feel a little more comfortable with their dying the older they are. I know that there is a natural order to the life cycle and its one on which old people die after having had a long life, young people have a life ahead of them and people with young children shouldn’t die. That doesn’t mean I am unaffected by the death of anyone, young or old I am touched by the loss for them and for their family but each loss, each experience of death touches me in a different way, death is unique and so is our response to it.

I recently worked with a woman who was my age. Her illness was complex and there was no further treatment available for her. She had children the same age as my own and she had a husband and a cat and she had an average, ordinary life very much like mine. She had some of the same interests and hobbies as me, we liked some of the same music and films and we had passed some of the same milestones in life, in another setting we might have struck up a friendship but, we were brought together in a situation in which she was dying and I was one of her palliative care team.

When she was given her prognosis it came as a shock to her and her family, they had hoped that there would be treatment options, there were none and so the count down to death began. She was give facts about the prognosis of her disease and the effect it would have on her physical being and on her quality of life.

When we talked about what she wanted for her final months she had a “bucket list”, it included all manner of things, big and small, mundane and ambitious, a recurring theme on the list was visiting places she had always wanted to travel to but she was now too ill to travel, too dependent on small machines keeping her pain free and alive and too ill for travel insurance and so half of the bucket list plans were wiped out in an instant. She hadn’t travelled before because life got in the way, there was always some other demand on the money she was saving or she couldn’t get the time off work or one of her parents or children were ill, all manner of reasons why she couldn’t do the things she wanted to do at some other stage in life and so she put them off, she opted to do them “later”. We all have these things on lists, whether an actual list pinned to the fridge or a list in our heads, we all have stuff we want to do, stuff we thinks/hope/say/expect we will get round to doing but we don’t.

I’m not writing this to advocate that you seize the day and live your dreams nor am I writing it to tell you that I have been prompted into action and am working through a bucket list. Nothing life affirming happened and that’s the bit I find most interesting, I’m working with someone of my age, she’s got unfinished business, an incomplete list, a list she will never be able to complete and I can identify massively with that and I feel very emotional about the unfulfilled aspect of it all and the belief that the clock is ticking but it doesn’t prompt me to action, it doesn’t prompt me to change, why would that be?

I can only conclude at this moment that the reason I’m not prompted is the same reason every one of us isn’t prompted to live their lives more fully: we are surrounded by death and we don’t necessarily think death is coming for us, we think we will have time, we think time runs out for other people, we don’t think its coming today and we think there’s some kind of rational or logical process to death in that it comes when the time is right but what we think is the right time isn’t necessarily the right time for other people or the world or the Grim Reaper or who ever comes for us.

But, if we are doing it right we should have an incomplete list, not because we haven’t had chance to do things but because we want to do so very much that we don’t have time to cram it all in and we have a list of incomplete things because we have plans and hold onto at least a gram of optimism and because we are engaged in the world, filling life with the big and the small: running down hills, riding a bike, admiring art, reading books, eating cake, falling in love, finding the perfect t-shirt, dancing to The Damned, laying in the grass looking up at the sky, holding a tiny hand, laughing until you cry, forgiving, being warmed by the sun and drenched by the rain, wandering round the supermarket, shopping for records, talking about the new things in the world and looking at old buildings and watching cheesy American comedies and knowing that these things are at the core of living every day right up until we die.

The story of the unguarded piece of paper with the red border

There was once an elderly lady who had lived for over 90 years, she was palliative and was going to stay in a home, a care home. She was only going for a short time while her family travelled to another city to go to a wedding. The lady was too ill to travel to go to the wedding and she told her family to go without her, she wanted them to celebrate the wedding and to bring photographs back to show her. She told her family she would be ok for the few days while they went away. Because the lady was poorly and she was palliative doctors had already talked with her about Cardiopulmonary Resuscitation (CPR) and after discussion the lady was happy that a DNACPR was in place, the A4 size piece of paper with a solid red border told medical staff that in the event that the lady needed CPR she did not want it, she did not want to be resuscitated, the lady knew that she was palliative, she wanted the right to say what treatment she had and wanted the right to chose how she died, she made a decision that her final moments would not be spent with medical staff trying to resuscitate her, she knew that the CPR might cause injury and she had decided that she wanted to be allowed to die and the doctors agreed. The piece of paper went everywhere with the lady, because she was frail and had heart problems it was important that the piece of paper went with her so there was no mistake about her wish not to be resuscitated. The document was a legal one and had to be respected by everyone. The DNACPR had a red border so it stood out from other pieces of white paper.

When the lady went to the care home for her short stay her family carefully packed the DNACPR with her belongings because they knew how important it was and they knew it was crucial that the document stayed with the lady during the journey and once she arrived at the home, just in case.

The family went to the wedding, after they had been gone for a day the lady became poorly, she had a heart attack. The staff at the home were good and caring and kind and they called an ambulance, when the paramedics arrived they asked about the lady and her wishes regarding treatment and about DNACPR.

The staff at the home were always very busy, they all worked hard and a lot of the time there weren’t quite enough staff to do all of the work that was needed and sometimes jobs were put on a “to do” list but by the end of the shift the jobs didn’t always get done and not everyone could remember all of the jobs for all of the people they cared for every day, they were just ordinary human people who sometimes forgot things. When the lady arrived at the home the DNACPR was given to the staff to put in the lady’s file so that it was safe and wasn’t forgotten about and so everyone knew where it was “just in case”. Something went wrong, maybe the phone rang at the exact moment of the piece of paper being given to the staff or maybe someone came to the door and caused a distraction or maybe there was an emergency to deal with and the piece of paper with the red border was put on the desk for just a moment and in the confusion and the busyness was then forgotten about, the DNACPR didn’t go into the file, no one knows why, the DNACPR vanished, no one knows where it went but it didn’t go into the lady’s file and so when she had a heart attack and the paramedics came and asked about the DNACPR no one could find it to show to the paramedics and so the paramedics had no legal reason to not carry out CPR, there was no evidence to stop the CPR and so the paramedics did their best and tried to save the lady’s life. The lady couldn’t tell them not to and the staff couldn’t find the DNACPR to show the paramedics and so for fifteen minutes the paramedics tried to save the lady’s life, even though that’s not what the lady wanted. The lady couldn’t be saved, she died.

Sometimes for the want of a piece of paper it goes wrong, no one did a deliberately bad or cruel thing, no one lost the form on purpose, everyone did their utmost and everyone wanted it to be the right thing.

I think about the Dylan Thomas poem “The hand that signed the paper” and about the line “hands have no tears to flow”, it was a hand that put down the DNACPR, it was a hand that moved it, hands frantically searching for the DNACPR, hands devoid of emotion. I think about the unguarded piece of paper which will probably turn up in a drawer or the wrong file or just under a pile of other paperwork, the mythical, magical, illusive and powerful piece of paper with the red border.

Eulogy

Not everyone grows up to be an astronaut,
Not everyone was born to be a king,
Not everyone can be Freddie Mercu-ry,
But everyone can raise their glass and sing.
Well I haven’t always been a perfect person,
I haven’t done what mum and dad had dreamed,
But on the day I die, I’ll say at least I fucking tried.
That’s the only eulogy I need,
Thats the only eulogy I need.

 

Frank Turner

From the 2011 album “England Keep my Bones”