No one can build the bridge on which you and only you must cross the river of life.

When Nietzsche said the thing about the bridge he was philosophising in the same vein as Sinatra when Sinatra sang “I did it my way” although Nietzsche said it first, and perhaps more eloquently but Sinatra had a better tune and he said it in Vegas, but I’m quibbling, the core message is the same: you have to find your way to live, to do life your way. There has to be a time when you start to make your decisions and your mistakes and you take responsibility for them equally. Only you know how to get your life right, how to do your journey the way you are supposed to and it cant be an extension of someone else’s life, it cant be their second life, their chance to have another bash at it by telling you what to do and yet, even when we know this and we sing the song and we say we are doing it our own way it is not possible to always consistently do it our way. We have to compromise, we have to consider others and we are policed and regulated by other people every day. Not just the laws and rules that govern but the social expectations, the views other people have of how we should be doing it, the way the current system(which many of us accept is making us ill) controls us socially and culturally and so we never truly have the freedom to build our own bridge, we’re dependent on other people for much of the planning permission and the materials.

When I talk with people who are dying there tend to be two camps, there are the people who take the approach of “I’ve lived and I’ve made mistakes and I didn’t always get it right but it’s done”, then there are the people who say “if I had my time again” or “If I’d known then what I know now”.

In both groups people talk about having “worried” what other people thought of them and this affected their decision making, how can it not when we are communal animals, we live amongst our own and have to adopt customs and rules which ensure we cooperate with the group, but there are rules and expectations and instructions from those around us which seem petty and conformist and controlling beyond the bigger picture of governing society. Rules about who we marry or what music we listen to or where we travel to or the job we do or the area we live in or what clothes we wear or whether or not we wear red lipstick. These are all things which people who are dying have told me they wish they had had the courage to break free from and make their own decisions on rather than taking the route of doing what was expected or insisted on by the people they cared about.

The tyranny of other people, the need for approval and the reflection of us in their eyes traps us in a way we don’t readily think of but was nailed by John Paul Satre in his 1944 play No Exit in which he opined “hell is other people”. We want to be liked, we want to be accepted and to find what in modern parlance we term our “tribe” but at the same time we wan to be ourselves and to live a life in which we feel free to be authentically us, whatever that is, sometimes its just to break out of the straightjacket of expectations and convention and to surprise ourselves and those who think they know us.

Years ago I worked in a service supporting people with dementia, in the day centre we had various groups and sessions, our work was based on the research of Tom Kitwood and his model of person centred care. One of the groups I supported in was a beauty group, it was simple stuff, basic hairdressing and manicures but it was enjoyable for the woman who attended. We had a selection of nail varnishes and some of them were nice, safe, run of the mill colours, pale pinks and corals, but randomly thrown in the mix was a bottle of sassy bright red, racing car red, a sexy vampish colour that had probably been donated by one of the staff. An elderly woman I worked with, who was what I thought of as very conventional in her navy blue slacks and cream fine knit sweater with short grey, permed hair came to the group one particular week and when I laid out the selection of nail varnishes like a pink colour chart she bypassed the safe colours and picked the red. Nails filed and painted she kept admiring them when she picked up her cup for a drink or when she held her cutlery at lunchtime or just occasionally in that way we do when weve had our nails done, just holding out a hand and checking it out and feeling a little bit pleased about it. Sad thing was, when her middle aged daughter arrived to collect her mum, she was enraged, she took me to one side and said “clean my mothers hands, shes not the kind of woman who wears red nail polish”.

I cleaned the nail varnish off and it was never mentioned again but the experience stayed with me more than 15years, whilst dementia is a cruel illness which takes away many of the aspects of who a person is it also liberates some people from the restrictions of who they are or who they are expected to be. There are all kinds of emotions and judgements tied up in a woman choosing a nail varnish she wouldn’t have usually worn and what this meant to her and what it meant to her daughter and what her daughter thought it might mean to the world. The small compromises we make for the sake of other people and for the way we want to be and be seen in the world still constitute choices, we are still selecting and rejecting so I’m left wondering are we still doing it our way even when we make a choice to do it someone else’s way?

 

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”

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.

 

Who does this work?

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Every day I’m involved with people who are receiving end of life care, some of them talk about the issues they are facing and some don’t. I’ve always thought it crucial that in order to be receptive to other people talking about their “stuff” I have an understanding of my stuff and how I got to where I am. I don’t force the deep, existential discussion on people but I don’t shy away from it when it comes up and I don’t change the subject to something safe and socially acceptable like the weather or Brexit.

The Canadian psychologist Jordan Peterson, in talking about people who work in EOL care, asked the question, “what is it about these people that they can do this work?”

I don’t think there’s anything special about me in wanting to work with people who are dying, there are lots of fields of work I couldn’t work in and would at best shy away from and at worst run a mile from. My route into this work has not been direct and deliberate and whilst I’ve worked in social care for the majority of my working life I only “discovered” palliative care a few years ago during my work in a residential service. Throughout my career I’ve veered towards working with the groups of people who are marginalised or whose situations challenge people leaving them feeling uncomfortable, currently, in our society, the dying tend to fall into this group and there is something about the outsider or perhaps our social pariah’s that draws me in.

It would be hard to fully articulate how I feel about working with people who are dying but I have a sense of my being driven by compassion, and a sense of unity with people, a sense of the commonality of the experience of death, its one we will all go through but many of us live in a state of denial or avoidance about our own impending deaths.

In some ways I’m a spiritual person have a spiritual belief but not one which adheres to an organised religious structure. My spiritual beliefs often provide reassurance when I am faced with challenges and serve to underpin some of my day to day living, these beliefs interact with my political views about equality and social justice and drive my day to day interactions in my work but Im not a moral crusader, nor am I from the “smells and bells” school of spirituality, not that I think theres anything wrong with that but its not my bag. I think Im fairly average and run of the mill.

Some of my beliefs about life and death have been shaped by my having read Buddhist and Hindu texts and read texts on wider spirituality as part of my own journey in trying to answer the big questions of “why am I here?” or “what’s it all about?”. I can try to process this belief through “thinking” but this belief system resonates with me somewhere else within my being, it’s not a thing I can fully articulate, it is a thing I “know” in a deeper and more core aspect of who I am. This might be the part of me described as my soul, it’s the part my friend calls my “knower”.

When I am reduced to my most basic “being” I am energy and I believe I came from and will return to energy. There is no reward and punishment system and no afterlife in the sense of that described by more mainstream religions and so I approach my work and the people I encounter from this position. I don’t want to say this is my calling because that word has too many connotations which don’t resonate with me, I just feel right about this work and I go about it mostly in a quiet way.

Like everyone I have experienced loss and grief. My dad died when I was 14 years old, his death was sudden and accidental and not what would be described as a “good death”. My dad was young when he died and within weeks of his death my grandfather died. The two men who dominated our world were gone within in a short period of time. There seemed to be a sense of acceptance about my grandfathers death, he was in his 70s and died peacefully in his sleep one new years eve and my mother was devastated. My grandmother wore black for a year to externalise her mourning but my father was never spoken of. In hindsight I understand that they weren’t equipped to deal with both deaths and so poured their grief into the loss which was palatable to the rest of the world. The death of a 35 year old man with four young children makes people uncomfortable, the death of a 75 year old man reflects the order of things and people are comfortable with it. There are no implored “whys” about my grandfathers death. There was no fear or confusion about his death, my grandfather had a “good death”, my father didn’t.

My experiences of death, loss and grief have undoubtedly shaped my perspective and my work. My experiences of not talking about death and not fully grieving have possibly created in me a desire to be open about death and about the emotional experiences of the process of life but I don’t have a sense of trying to redress the imbalance or fix myself through my work. Daily in my work I talk about death and I am mindful of the fact that this isn’t readily transferrable to my personal life, many of those around me don’t want to talk about death whether mine, their own or in general and so I try to be sensitive to the feelings of others. I still grieve when people I’m working with die, some cases touch me deeply and I still experience shock and distress at the news of some deaths despite the fact that they were fully expected. I don’t claim to be any better equipped to deal with deaths in my personal life as a result of my work and I don’t have a “how to” guide on dealing with dying and death but I am happy to hear you talk about it without shifting the subject to the weather or the football.

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.