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.

Several years ago I 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 at the end of her life 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 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.

When I read that story 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 but also hands trying to carry out life saving tasks, our hands can be incredibly expressive and convey so much including kindness and compassion. These are services staffed by people, ordinary people like you and me and which one of us can say we never made mistakes at work? 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”

Anger is an energy

Today I’m distracted by repeated thoughts of a woman I worked with, when I move into thinking of her I well with emotion and I’m overcome, I have to stop thinking about her, but then my mind creeps stealthily back to her as if to test the water of my thoughts. There’s a tentative tread towards recalling her, towards allowing my mind to remember her, to picture her as she was when I visited the family home. She was the mother of a man who was dying, she was caring for him, he was only young and she has stayed in my thoughts long after my involvement with the family ended. I think of her whenever I work with carers who are deeply distressed by the suffering of their loved ones and I think about her when I encounter strong, fearless women, woman who have passed the stage of life where they care what the world thinks about them and so are free to be authentic and free to voice their rage and to process it in a way that works for them.

Distress is manifest in a variety of ways but for this woman it was expressed in honest, direct, visceral ways. Her rage was expressed in her physicality, the way she moved and gestured when she spoke, the way she grimaced and contorted her face as she retold incidents, the way she re-enacted conversations as she moved around the room pushing furniture out of the way or sitting at the dining table writhing and convulsing with her hands trembling in fists held just in front of her in a way that reminded me of someone experiencing a seizure, the way she cried and shouted in the course of every conversation I had with her. She was a terrifying presence when she was in this flow and I was in awe of her. She unsettled me, she left me feeling rattled, she filled the entire room and I found no reason to speak or to try to explore what was happening because she was a raging force of nature and she was centre stage and I was overwhelmed as her audience of one. She was incensed but her anger was purposeful, it wasn’t indiscriminate, her fury was about the situation, the disease and the injustice of it, she was angry about the economic system and its injustices, she was enraged about the inequities in funding and access to care and in her anger she was eloquent, hypnotic, persuasive and passionate and so I didn’t want to do anything other than allow it, to observe it and often to slip into it in order to fully experience it. When she was angry she was absolutely alive, the inner emotional fight she was experiencing every day watching her son die was manifest on the outside through her rage. She hid her rage from her son and so it needed an outlet. Her anger made people who witnessed it uncomfortable, it made people turn away and in some cases walk away. She wasn’t stoic, she wasn’t dignified or reserved she was f**king raging and why not, her son was dying, his life was barely underway and he hadn’t done many of the things we see as landmarks on the road of an adult life, how could she convey in words the anger and injustice she felt, it was impossible. Far better to show me, to make me see and feel it, to provide me with the experience of apprehension, uncertainty, dread, loss of security, of wanting to run away, of wanting it to stop, of wanting to be rescued of wanting it to change.

When I reflected on her anger after each visit I could process it in a logical way and relate it to research in death and dying, I could see the resonance with Elizabeth Kubler-Ross’ 5 stage model of grief, anger is in there as a stage but I never said this to her at the subsequent visits, I never spoke of it, how could I tell a mother who was grieving for the impending death of her son that there was a model which could provide comfort and reassurance about the fact that this is an understandable part of the grief process. I understood that some of her anger was projected onto issues outside of the illness but she was subject to the system and experienced first hand the inadequacies of it and the impact of this on her son and his situation and so I couldn’t disabuse her of this or deny the reality of hers and her sons experience.

Rather than try to comfort or sooth her I wanted to join her, it was contagious, I wanted to give vent to my rage about all manner of things, the injustice of her sons illness was on my list, her pain was on there too but I had a long list, a list of “things which make me angry”, some of them my own personal rages and some of them bigger societal rages. I never gave into it, I remained professional, I was her witness, I didn’t try to stop her raging, I didn’t hush her or offer solace because there was no place for these at that stage in her grief, I didn’t want to try to curb her anger because it was likely to be the thing that kept her going after her sons death, it was going to be her survival tool, she was going to be a campaigner and an activist in the world in memory of her son and in support of others so I had no desire to dissuade her from her anger, as Johnny Rotten said, “anger is an energy” and she was bouncing with it. At the end of each visit I would climb into my car and drive back to the office but on the journey I would ensure my music was loud and angry to give voice to my own rage because sometimes its important to have the anger.

 

Death and Dying in the North of England

 

No one here gets out alive – Jim Morrison

 

I am employed in end of life work in the North of England and this blog is an outlet for my reflections on my experiences and encounters with people who are in the final months, weeks and days of life. I certainly don’t claim to be an expert in end of life work and every day I learn something new from people I work with so I am not aiming to teach anyone anything about death and dying but I do understand that the subject of death is still off limits for day to day discussion for most people and I’ve seen from my work that this isn’t always beneficial, not only for the person who is dying but for the friends and family who remain.

I’m not on a crusade to harangue people into talking about death but I do believe we ought to have the freedom to discuss these issues should we chose to do so. So much of our experience of life is spent denying or running from death, whilst there is no benefit to repeatedly focusing on the morbid aspects of our existence there is benefit to remembering that we will all die eventually.

I can only talk about death and dying in the North of England because that’s where I live and work, the North of England is a beautiful and inspiring place to be and my work brings me into contact with some wonderful people but I also work with people who are living in terrible circumstances whether due to financial poverty or social, emotional and psychological poverty, in the course of a week I often experience the best and worst of human relationships. I don’t have any answers or “how to” lists, I just have a very genuine commitment to supporting people at the end of life and supporting people who might want to ponder life and death…I’m generally banned from talking about this stuff in polite company because it can be a bit of a buzz crusher on a night out and so this blog is the electronic equivalent of therapy.