Let ‘s Talk Death – who are we and why are we here ?

In this collective blog, some of the organising team of Let’s Talk Death share their reflections on why they chose to get involved in planning events for Dying Matters Awareness Week.  We welcome comments and thoughts – on the blog or via Twitter @letstalkdeath
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Laura Middleton-Green, Lecturer
I’d originally planned to be a midwife. A placement in oncology on my nursing training changed all that, and I have been working in palliative and end-of-life care ever since I qualified as a nurse. I’ve always been interested in how different people are in relation to their attitudes towards mortality, how beliefs, faith, fear, attachment and love all influence how we face our final journey. And as a Vipassana meditator, I firmly believe that thinking about death can enrich our appreciation of being alive in the present moment.
It was around the time that my close friend Josh died in a bicycle accident that I became involved in Death Cafe, finding myself with nowhere to “be” with the thoughts and feelings of grief. A small event found people gathering with all sorts of different stories, instantly connected through their shared experience of mortality and loss.  I recall a close friend telling me that when her mother died she suddenly felt as though she were adrift on an ocean in a boat with no oars, yet suddenly realised that there were millions of others who were also adrift on the same ocean – she hadn’t noticed them so clearly before her own experience of loss.
I have attended or organised numerous Death Cafe-type events – in Berkhamstead, Hebden Bridge, Huddersfield and Bradford.  Something magic seems to happen in those spaces – it appears to me that death is not necessarily taboo, it is just that there is no natural space in which it can be talked about – we live in a world where all efforts seem to be going into developing the technological wisdom that allows us to live for longer and longer, we insure ourselves against every eventuality as though we can somehow fend off the inevitable. In this world, death has no dominion. Yet it does – as anyone who has been affected by bereavement will know.
After a series of lectures on palliative and end-of-life care a group of enthusiastic students began toying with ideas about what we could try at the University. Thus, “Let’s Talk Death” was born. Our first series of events in 2015 included a week-long Death Cafe in the Richmond Building, University of Bradford, and a half-day free conference. After this we agreed to continue plans for the following year, and this was made much easier by the generous donations of those who attended the events. We are now actively planning events for May 16th-19th 2016 and are keen for people to get involved – you don’t need to have any particular work-related interest in the area, and staff and students alike are most welcome to get involved. There are a range of levels at which you can participate – from baking cakes for the Death Cafe to designing our new logo, coordinating visitors to the University at the conference on 16th May, or writing a blog about your own personal experiences of loss that might help others who read it. The group are inclusive, respectful and creative. This year we are delighted that participation has extended beyond the University, with Nick Baggio (Marie Curie Chaplain) and Roz Roberts (Hospice Volunteer and Zen Buddhist) joining the group.  We are also working closely with local community organisations Pushing Up the Daisies and Calderdale Dying Matters Partnership.
If you are interested in getting involved, do get in touch: L.Middleton-Green@Bradford.ac.uk
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Ghost bike – Josh Phillips, Deansgate, Manchester

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Becky Barton – 3rd year children’ nurse
Death, the elephant in the room. We all know that one day it will happen, lets face it, none of us get out alive. But we choose to let the topic get swept under the carpet. Its not exactly seen an ideal conversation to have over your Sunday Lunch… “please can you pass the gravy? Oh and can I also have this lovely mahogany coffin when the time comes?”
Or is it?
My interest in issues surrounding death and dying were first brought to light when my family were given the news that my newborn cousin would probably not see her Late Teens. Complications at birth left her with a Hypoxic Brain Injury and her life expectancy was not good. The overwhelming emotion of the situation engulfed our family. Time went by and slowly we started to heal. But only because we all became comfortable talking about the fact Lucy was going to die a lot sooner than first anticipated…
I decided to get involved in the Death Cafe with the naive view that I could just help others talk about their worries. What I got out of the events was so much more than that. I saw people in varying stages of grief, had the honour of having people share their personal experiences of death, discussed concerns people had and helped people to feel more able to talk about this overwhelming topic… But I also gained so much. I left these events feeling invigorated, refreshed and inspired. I now feel more able, on both a personal and professional level, to be able to tackle death and dying head on. I feel I have a better understanding of grief and common concerns. I think everyone should experience this type of event…. Because it has been one of the most valuable learning experiences I have ever had…
(Plus there is cake!)
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Fallon Scaife, 3rd year student nurse

At the age of 18 I started my first care job in a residential home for the over 65’s. I must admit that I did not know what I was getting myself into or have the first idea of what lay waiting for me beyond those doors. As I got to grips with the job and learnt more about caring for people I started to realise that I really enjoyed the work that I was doing. After a few weeks I came on shift one night to be told that a resident who everyone really liked was dying and I suddenly realised that this was one part of the job that I had not even thought about before now. Once all the other residents were settled for the night I went to sit with the gentleman who was dying and held his hand. Even though he did not respond to me in any way I felt that he was aware of my presence and had become more peaceful because of it. I spoke to him and reassured him that I was there for him. Throughout my shift I sat with the gentleman as much as I could in between my care rounds and talked to him. When he passed away in the early hours of the morning I felt that his death had been a peaceful one. Since this experience I have been with many people during their last hours of life and this is what brought me to nursing. I like to be able to help people at the end of their lives and make their last hours as comfortable as possible.

When I heard about the death café at University I felt that I wanted to be involved with this and I found it a fantastic and challenging experience. I found myself able to offer comfort to people that had experienced a recent bereavement as I had experienced this myself in recent months but I found it a challenge when I was approached by someone with a life limiting condition. Hearing the individual speak so openly about death and what they wanted to happen after their death was difficult but it made me realise that this is why we were holding this event. Not everyone is prepared to talk about death and dying whether it is their own or someone elses. This event was to erase the stigma surrounding death in the UK and speaking to this individual gave me hope that this was a sign of things to come. I know it gave me the courage to speak about my wishes and to start putting things in place for when the time comes. I have also been able to speak about and deal with my recent personal experience because even though I have been with so many people when they have passed away it was a totally different experience for me when someone I was close to passed away.

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Kim Selby – Second year student nurse

My name is Kim, I am a second year Adult Nurse student and I live with a chronic illness. Five years ago following years of chronic stomach pains and several episodes of acute pancreatitis. I decided to have a procedure called an ERCP which looks at the bile ducts and pancreas. This procedure should have meant that I was in and out of the hospital within the day. Shortly after the procedure it became apparent that things hadn’t gone to plan and I was suffering with acute pancreatitis and my organs had started to fail. I am still unable to remember the days that followed, my family received the phone call to say that they should make the journey to the hospital and prepare for the worst. My husband and I had not had any discussions around what if or what we wanted if the worst ever happened to either of us. Laying in the hospital bed and wishing that the pain would go away and wanting the toil of the interventions to stop. Laying their and wishing my life away I suddenly became aware of the importance of those conversations. I can now say that we have had the conversation. Although it isn’t set in stone as our opinions and wishes change, we both know what each other does and does not want. I have always encouraged my children to discuss any questions they have about death, they have experienced death of their pets, friends and family members. My answers have always been honest and I feel that this has helped them to be accepting about the topic.

So my reasons for partaking in the group began with my own experience of laying on my death bed and not been prepared. Since then I have lost several people close to me, some of which we were able to plan for and these deaths I have been able to come to terms with more easily. Working on ICU allowed me to become involved in a bereavement group. The group met regularly with family and friends of those people who had died on the unit. Discussing their lives and deaths seemed to help them come to terms with their loss. Seeing how the meetings helped these people gave me the understanding of how helpful preparing for death is. On my second placement I was fortunate to hold a ladies hand whilst she passed away, unfortunately her family did not arrive in time. I felt privileged to be there and to offer comfort to the lady and her family. Her family were very upset that she had died before they arrived but at the same time they thanked me for been there.

I do believe that people should be able to die with dignity and someone there with them. I understand that this is not always possible but feel that by talking more about death, it will become more acceptable and less taboo. People prepare for the birth of a baby why shouldn’t we prepare for the death of someone? Although last year I was only able to write a blog and linger in the background, I am hoping to be more involved this year.

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Roz Roberts, Hospice Volunteer

Death – the elephant in the room?  How do you eat an elephant? In bite sized chunks. Often we only recognise the elephant when we are forced by circumstances to confront what it means to us.

If we can approach death, & dying gently & over time, & with others, we can unwrap it into its parts; (fear, grief, compassion, love, separation & loss), & we can see that death is a part of life – the ever present cycle of change. May be then the elephant is not death, but our fears; of change & loss, our wanting things to stay the same, our concerns about & for loved ones, & the difficult prospect of pain, loss of dignity, losing our abilities as we age or progress through illness or disease.

This year my younger sister died, followed shortly by my frail elderly mother. Both events were anticipated – just the timing was uncertain. It has been both enriching & draining, emotionally & physically; a time of deep human connection, of being supported, a sharing of a universal human experience.

And it convinced me that approaching & befriending death, ageing, & change, as a part of everyday life – before events force us to – enriches life & how we live it, how we share it, & how we relate to others. Sometimes the hardest part is finding the opportunity, the space, & the courage to start this exploring & sharing. And doing it in bite sized chunks.

A death cafe is a great place to start.

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Kate Palmer, 3rd year student mental health nurse

I know and understand that death is part of life. It’s been part of my life since my Dad died when I was 14. Through coming to terms with and accepting personal loss, I feel I have something I may offer to others.

I know there isn’t a script I can follow when talking with someone about death and dying. But I can listen, try to understand and be with the person. I can be human, real and myself.

As a Mental Health Nursing student, I consider it a privilege to help people through difficult times. It’s in the small acts of kindness we can connect; a smile, a cuppa, a nod, a little well timed humour…

I became involved with The Death Café to contribute to the conversation about death. And life. With anybody who wanted to talk. To remove the stigma. To dispel the myth that it’s morbid to talk about death’s inevitability. I liked the idea of sitting with a coffee, eating cake and talking about the real, messy stuff of feelings.

The conversations were so different; filled with memories of characters and stories. Yet, the feeling I remember from the Death Café was a sense of relief. People want to talk about death and dying. Even though it can be hard to start, once the conversation flows, it helps. And if it helps, maybe it can heal too.

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Death: a personal view

There are so many deaths that I have encountered and they have all had a different impact on me. Such as the death of my biological father, my granddad and my great auntie all happened when I was very young. Although they are sad and final, they are not ones that still bring me to tears. They do not give me a sense of heaviness in my stomach nor do they leave me feeling a piece of my jigsaw is missing. Reflecting back I think the reason being that these happened when I was young and my parents sheltered me to some degree. Those deaths that have had a bigger impact on me, are those of people who have been in my life much longer. Perhaps this is due to me having more memories of them and more experiences that include these people.

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The death of my biological mum four years ago is still extremely raw and upsetting for me. Her death was sudden and although she ‘let’ my parents adopt me, she was still a large influence on my life. I saw her on a regular basis and the dynamics of the adoption meant she was a part of my family. I found breaking the news to my children that their ‘Auntie’ was dead difficult and one I hope I do not have to repeat while they are still young. My eldest child was 12 years old she seemed to understood better. I encouraged her to attend the funeral, and she tells me this helped her to understand that she wouldn’t see her ‘Auntie’ again. My other children still ask questions and I find that I keep repeating myself. I am very matter of fact with them and in return they are very curious but yet accepting of the situation. As a parent you want to do what is best for your children, but how can anyone know what is best when discussing death? I personally feel that due to the suddenness of her death, I still have many questions unanswered and I have had to come to terms with this. It has taken time and has included emotions ranging from anger to sadness but I now feel acceptance.

The death of my closest childhood friend is one that leaves me physically drained, it is still so emotional and I am still utterly devastated. I had been really ill just before and I had nearly died myself so when she died I felt very lucky to be alive. Emma was one on her own and to me she was my friend who I saw as funny, inspirational, colourful, outrageous, and yet she was sensitive and caring. My childhood was amazing and all those mischievous things children get up, I got up to with Emma. Due to the circumstances surrounding her death, Emma chose when she died and she controlled her departure. The void she has left is one that she had not realised she filled, she hadn’t realised that she brought such happiness and love to those who knew her. I sit here writing about someone who I miss dearly, and today would have been her 35th birthday. I feel a lot of guilt and despair that I was too ill and unable to help the pain she felt. This does not alter when people say that she is in a better place and at peace, all I know is that she is gone and I miss her.

Those that I have lost to terminal illness, I feel I have handled their deaths much better. The time that they had to ‘prepare’ for death not only helped them accept that they would die, but it has helped their relatives and friends. We were able to visit and discuss an array of subjects, such as funerals and the good old times. It did not seem fair to see them in such distressing circumstances, discussing their death with them felt strange yet it was not an unpleasant experience. I found it very emotional at the time but I can look back and recall acceptance. As a family we have continued their legacy by raising money for charities that were involved in their deaths. Although death is final, we find talking very openly about their life and deaths, helps everyone come to terms with their feelings and allows people the freedom to laugh or cry when they feel they need to.

Through the tears that are falling and the heaviness I feel from writing about the deaths of people close to me I ask you this: People say death is a taboo subject, is it the feelings that people have surrounding death that are actually taboo?

 live well

Kim Selby, 1st year student nurse  – 5th March 2015

Follow me on @selbyfamily

For tweets on the work of the “Let’s Talk Death” group, follow @LetsTalkDeath

How do you plan for the inevitable?

How do you plan for the inevitable?

It was the 24th November 2014, I was 7 hours into a 13 hour shift on placement and I received the worst news I could ever have imagined. My 25 year old friend whom I had only seen the previous evening had died in her sleep. Many thoughts raced through my mind as I struggled to work the rest of my shift and then I returned home to find that I could not even bring myself to go see her partner and two young sons. I felt bad that I had not been there and that I had continued to work my shift after hearing the news, this was because I was informed that I was already behind with my placement hours. When I finally managed to go to see my friend’s partner I found him worrying about financial matters and realised that there had been no plans in place for something like this happening. Who wants to think about their own death at 25 years old?

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It made me start to think that death is such a taboo subject, not to be mentioned unless someone has actually died and that it is mainly older generations that have plans in place for when it happens. People find it difficult to even bring themselves to speak about death and find that they automatically change the subject when it is mentioned. There needs to be more openness when it comes to death and dying as so many people die without having any sort of plan in place, this leaves loved ones not knowing where to start financially or otherwise. Thinking about this made me realise that I did not have a will or any sort of life assurance in place and that if anything were to happen to me, my family would go through the same financial difficulties as my friend’s partner. It was an extremely difficult time for him as he tried to sort out the household bills, debts and benefits. On top of all this there was a funeral to plan and pay for. Where do you start in this situation? We are very lucky to live in such a lovely community and everyone rallied around him offering as much help as they could. He also did amazingly well at managing to organise everything as quickly as he could so that he could concentrate on looking after his sons. It made me think, would my partner would have coped so well?

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I have now started to plan for the inevitable myself and have a policy in place that will pay for my funeral costs and any debts I owe. It is not a nice thing to have to think about but what happened to my friend made me realise that we can all die at any time and even being young does not make us invincible. My partner is aware of my wishes for when I die especially for my funeral as the thought of being buried makes my skin crawl! We have also talked through what would need sorting out financially and how to do this. I now want to raise awareness amongst young people about the importance of putting plans into place for when they die. I also want to encourage people to be more open about death and not treat it like a subject that needs to be changed as soon as possible when it comes into conversation. People should be able to talk openly about their experiences without wondering what other people think about it. I have found as a student nurse that even professionals find it a difficult subject and I have seen some badly managed situations in practice as a result. I understand that thinking about death is frightening but not informing someone properly is even more frightening, I have found most of the time that people just want you to be honest with them. Supporting people at this time in their lives has been so much easier when they understand what is going on and what to expect. This is why, when the opportunity came up to be involved in having a death cafe and conference for dying awareness week I volunteered immediately.

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Blog by Fallon Scaife – follow her on Twitter – @mrsscaife

Follow our group @LetsTalkDeath

It happens to us all …

Death. The only inevitable event that we cannot hope to evade, yet we avoid talking about it at all costs. In fact, I’ve been sat staring at an empty screen for ages trying to think of what to write. I have no idea where to start. It’s definitely a difficult subject. And I suppose that’s what “Let’s Talk Death” is all about.

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I didn’t really have a lot of experience of death when I was growing up, aside from the odd pet goldfish or hamster. Any deaths within the family or of family friends were fairly shielded from me. I knew about them of course, but I didn’t attend a funeral until I was in my twenties. For me, death was going to sleep and never waking up and going to live in heaven with God (“heaven” being some form of cloud-based accommodation and “God” being a bloke that looked remarkably like Father Christmas but in white robes). At least that’s how I thought of it. Didn’t sound too bad really.

Not until my teenage years did I realise what death really was – the finality of it and the emotional impact on loved ones. That moment when you realise you are mortal is a pretty scary one and I, like many others I imagine, don’t really dwell on the subject. I have thought about it occasionally, usually when I’ve been bereaved or heard about the death of someone I know, but I don’t think about it often and I talk about it even less.

I’ve probably talked about death more since becoming a student nurse. As an adult nursing student, I have (and will) encounter death in the course of my work. We have various sessions on end of life care and we do talk about death in a professional sense. How do we support people who are dying? How do we support families and carers? How do you talk to someone that has just been told they have months/weeks/days to live? What do you say to a family member whose loved one has just died? Hard, difficult, emotional conversations. I do think that the more we’ve talked about it in uni, the less uncomfortable I’ve felt about having those conversations at home. However, that’s not to say my family and friends are quite so keen.

There’s many good reasons to talk about death. It happens to us all – not talking about it won’t change that fact. Being clear about what you want for your own death, is important for the people in your life who will need to put your wishes into action when the time comes. Just talking about death can help us understand it a bit more and the more we understand something, the less scary it is. People worry about having those “difficult conversations” with family, friends, or as part of their work. But those difficult conversations might not be quite so difficult if they weren’t so alien to us. The more we talk about death, the more familiar we will be with it. The less those words will sound so insensitive and brutal, and it will become more “normal” – because death is very normal. There’s nothing strange or new about it.

Talking about death is such a social no-no that it’s very hard to initiate a conversation. It’s just not the “done thing”, is it? How do you start talking about death without people thinking you’ve gone a bit weird, or worrying that you’re suicidal? I think that’s why I like the death café idea so much. You can just turn up – you don’t need to know anything, plan anything, or even think about it before you get there. There’ll just be other people you can talk to, share your experiences and ideas, discuss about your fears, or just listen to what others have to say. A cup of tea, a piece of cake and a friendly chat…about death. What could be nicer than that?

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The “Let’s Talk Death” initiative at the University of Bradford includes a week-long death café during Dying Matters Awareness Week 18th-23rd May 2015. Hosted and organised by lecturers and students, the aim is to provide a safe, informal space for anyone to come and have a chat about any aspect of death. We hope that by doing this we will help to reduce the anxieties that people have about dying and bereavement, and make those “difficult conversations” a little less difficult for all.
This collaborative blog will share the thoughts and experiences of staff and students on the subject of death in both personal and professional capacities.

Follow us on Twitter @LetsTalkDeath and join in the conversation using #LetsTalkDeath.

POSTED BY  @Dorcaselambert 26th January 2015