The Importance of Stories: Children, Dying and Death

It is my pleasure to host an essay by Dr Rachel Fearnley who is a research consultant specialising in children’s lives when a parent has a life-limiting physical illness.   In my book I introduce the concept of anticipatory grief as the process of grieving before a person has died and the impact of witnessing terminal or degenerative illnesses.  I have also written an earlier blogpost about the language used when referring to cancer.  Dr Fearnley’s work dovetails into my research and has very kindly accepted my invitation to provide an insight into her research and expertise into how children’s lives are impacted as a result of a parent’s life limiting physical illness.

The Importance of Stories: Children, Dying and Death

‘We live in stories, not statistics’ (Gilbert 2002). Anyone who has heard me speak will be familiar with this quote, how it is representative of my career and how the sentiment held within it is core to my values. Stories have always been central to my career starting in the early 80s when I was employed as a nursery nurse. For me story-time at the end of each session was a magical, special time to be treasured. I always enjoyed telling the young children stories which captured their imaginations and took them off on wonderful adventures and to different places and situations. Later as I changed career the emphasis shifted from telling stories to listening to other’s stories and helping them to try and begin to make some sense from what was happening in their lives. Through this role in family support I became increasingly interested in social and emotional aspects of dying and death.

This curiosity led me back to university where I undertook a PhD which explored children’s experiences when a parent is at the end of life. My research was  qualitative, and at its core was the emphasis on listening to children’s stories about their experiences. Within the research process I encountered gatekeepers who wanted to protect children from being exposed to the research. I was told that it would ‘upset’ the children if they started talking about what was happening in their lives and that it was therefore inappropriate to begin to explore with them their thoughts, feelings and stories. However, when I did find people who were willing to engage in and support the research I was overwhelmed with the openness and honesty from the children and young people I met. Yes some were upset talking about what was happening after all it was an emotional and very personal topic. But our meetings were contained in a safe place and were managed by a person who genuinely wanted to listen and take time to try and understand. The participants were engaging and shared their stories willingly and moreover all said how it had been helpful talking to someone who was really interested in their stories and who was prepared to listen without passing judgement.

Their stories often shared a similar theme; they wanted to be involved in conversations about their parent’s illness. However, for many this was not always the situation. There was a sense that adults tried to protect them from the realities of what was happening. There was a view that children were ‘too young’ to be told or that they didn’t need to know because the information would be too distressing. However, the children and young people I met generally held a very different perspective. They all had a ‘knowing’ that something serious was happening in their family, even when this had not been articulated to them. In these situations there was a tendency for them to put two and two together but not make four. They spoke about picking up cues from observations (of their parent’s behaviour and changes in their health) and from overheard conversations. For some young people there was a sense of frustration that they were being ignored and that indirectly they were being given the message that they were not important in what was happening within their family. This, I think, is a sad reflection of how in society there continues to be a need to exclude children from dying and death.

Tony Walter (1996) has written about dying and death from a sociological perspective. Within his work he suggests that an important element following a death is for individuals to be able to talk to others about the deceased person and through this to develop a ‘durable biography’. This durable biography, according to Walter, not only allows them to learn more about the deceased person but also about themselves. He suggests that the process by which this is achieved is through conversations and discussions with others who knew the deceased person. The maintaining of the relationship, Walter argues, is substantially achieved by talking about the deceased person with others who had known them, sharing stories and memories, adding previously unknown information and also challenging previously held assumptions about them. I have built on Walter’s work to suggest that during parental illness, children are ‘writing’ a penultimate chapter (Fearnley 2015) about the illness. This is a prospective chapter and the quality of its content is dependent on the extent to which children are included in conversations and information sharing about the illness. The ‘writing’ of the ‘penultimate chapter’ is important in helping children make meaning from their current lived experience and helps prepare them in the writing of their final chapter about their parent. However, when children are not included in conversations they are then not able to ‘write’ a meaningful penultimate chapter about their lives with their ill parent.

I wonder whether as adults we are afraid to listen to children, are we concerned about what we might hear? Certainly in my research there was a sense that sometimes professionals (mainly from within health care) were concerned that they would be ‘opening a can of worms’ if they started talking to children about the illness. Other worries were that such conversations would take too much time or that they were not qualified to work with children. As one nurse said to me ‘I work with adults not children’.  These findings are congruent with recent research that again highlighted that health care professionals often felt that the children of patients were not their concern (Franklin et al. 2019). I wonder if there needs to be a shift so that professionals who work with adults also feel confident at least talking to children.

Recently my relationship with stories has taken a new and totally unexpected direction. After some years of trying to raise awareness about the importance of supporting children and families during parental life-limiting illness with the feeling of little success, I was encouraged to write a novel as a way of exploring some of the typical issues families and children experience during the illness. Our Family and IT is the story of an ‘ordinary’ family faced with extra-ordinary changes and challenges following the mother’s diagnosis of ‘IT’ an unnamed illness. I did not want to focus on one illness but rather on the social and emotional impact any life-limiting illness has on family life. I carefully considered the ages of the three children for maximum impact within the story; each family member narrates the story of their lives following the diagnosis. I have tried, based on my research findings, to tackle some of the important issues that families typically face during this health crisis. These include communication, identity, emotions, parenting and support. Within the book different dilemmas and challenges are explored, for example do the parents tell their children what is happening, how school and friends manage the situation and what happens to teenage boys when they are not listened to. And so with the publication of the book, I feel my relationship with stories has come full circle.  However, my opinion remains that as a society we still have some way to go before children are included, to the extent they want to be, in stories of dying and death.

For more information on Dr Fearnley please see here:  http://www.rachelfearnley.co.uk/

To buy Dr Fearnley’s book please see here: http://www.rachelfearnley.co.uk/http-www-rachelfearnley-co-uk/

Twitter: @RachelFearnley1

 

References

Fearnley, R. (2015) Writing the ‘penultimate chapter’: How children begin to make sense of parental terminal illness, Mortality20(2): 163 – 177.

Franklin, P., Arber, A., Reed. L., and Ream, E. (2019) Health and Social Care Professionals’ Experiences of Supporting Parents and their Dependent Children During and Following, the Death of a Parent: A Qualitative Review and Thematic Synthesis, Palliative Medicine 33: 49 – 65.

Gilbert, K. R. (2002) Taking a Narrative Approach to Grief Research: Finding Meaning in Stories, Death Studies, 26: 223-239.

Walter, T. (1996) A New Model of Grief: Bereavement and Biography, Mortality, 1(1): 7-25.

 

When grief is complicated but it is not complicated grief…

This is a letter written by a grieving daughter who would like to remain anonymous. She’s asked me to post this in the hope that it will help someone else in a similar situation.

Not all relationships are straight forward and ‘ideal’.  Ambiguous or complicated relationships can (but don’t always) lead to ambiguous or complicated grieving.  This is not the same as complicated grief which is different.

If you’d like to know more about why grief is so individualistic, or what complicated grief is, or have any other questions, take a look at my new book “Grief Demystified: An Introduction”:

Grief Demystified on Amazon

“Dear ‘Dad’,
I’m pretty confident you’ll be wondering why the inverted commas. Of the few communications I’ve ever received from you over the past 50 years, you have always referred to yourself as ‘dad’. My opinion is that the label has responsibilities and expectations that you have never demonstrated, so you are not worthy of that title.

Your daddy’s girl was left bewildered and devastated when you left without telling anyone when I was 6 years old. I thought I’d done something wrong and I was being punished. No-one told me any different. No-one talked about you, but I do remember your mother chasing you down the street with a bread knife threatening to kill you… that image pretty much sums up the memories of my childhood: violence, shouting, fear, neglect, suffering, confusion. I found out many years later, that you had left after coming home and finding my mother on the floor having taken an overdose of pills. I guess she couldn’t take your drunk or drugged up violence and the trips to the hospital any more.

I tried to get to know you when I was a teenager; I even emigrated to the country you were living in to do so. In hindsight, I was still seeking reparation for the ‘wrongdoing’ I had done that had ‘made’ you leave when I was 6. You rewarded my efforts by getting drunk every.single.night, vehemently denying everything you did that I witnessed as a child, and swinging for me with your fists. The irony of course is that to everyone else you were happy, generous and fun.

After trying and failing to build a relationship as a daughter with you, I moved countries. But you would get drunk and ring me to verbally abuse my life choices. I had sold out because I lived in America; you hated the country. I had sold out because I was the first person to go to university in the family; who did I think I was? I had sold out because I worked a lot and didn’t party like you; I was boring and ‘Americanised’. Eventually I moved and didn’t give you my phone number. After failing to build a daughter relationship with you, you wouldn’t allow me to even have an adult relationship with you.

The last time I saw you was when your beloved mother was ill, that was twenty years ago. You flew back to our home town to visit her prior to her death. I found out you were home because my mother received a phone call summoning me to a pub to see you. I went, as I always did; I never wanted a reason to feel guilty or accused of not being receptive to a relationship with you, even if it was on your dysfunctional terms.

After years of peace and quiet, you started sending me friend requests on Facebook that I kept rejecting. After a while your persistence paid off and I accepted you. But you never even say ‘happy birthday’ to me either publicly or privately.

I had to ring you 11 years ago to tell you that the grandchild you had never met was terminally ill. Your exact words are seared into my memory like branding on a farm animal, “shit, I’m having such a bad week, first an argument with my girlfriend, now this.” Your first thought was about yourself, the non-existent ‘grandfather’, you never asked about the three year old child that was dying of cancer, you never asked how your daughter was while she was watching her son die in her arms. Sadly, after 40 years of life, I didn’t expect anything else from you. That statement pretty much summed you up. I haven’t spoken to you since.

I hear that you have died. I had anticipated that at some point I would have to deal with your death and the ambiguous feelings that would arise. I was never sure how this would feel for me; would I feel nothing because we have a virtually non-existent relationship, or would I feel emotions because you gave me life? I have ambiguous feelings, which accurately reflect the ambiguous relationship we had.

They say your parents fuck you up, I would agree with that. But as an adult, you have the choice whether to maintain that status or change it. They may have given you a beaten up old car, but you sure as hell can choose to pimp that mother up. And that’s what I’ve done. So thank you for contributing to fucking me up, you provided me with an array of tools with which to understand complexities I may never have understood if I’d had two normal parents, a dog and a white picket fence.

One of those complexities is dealing with people who didn’t know you; those friends and your wife that you lied to about your past. They are sainting you online, sending condolences to the ‘family’ you never had any contact with, talking to you in ‘heaven’. Who am I to shatter their illusions?

That 6 year old girl will never understand why you didn’t love her enough to be her dad, and this 50 year old will always envy those that have a dad that loves and cares for them.

I did find a short letter you sent twenty years ago following your visit to our home town and the last time I saw you. It contained a photo of us together in that pub, and your words ‘all my love dad xxxxx’. It is the only tangible proof I have that you existed. It is the only tangible proof I have that you may have had some feelings towards me underneath that selfish persona. So, thank you for that, and for triggering some happier memories that I’ve managed to retrieve and receive comfort from.

I hope you Rest In Peace ‘Dad’, I love you now as I loved you then, because despite the pimping out, the bodywork always remains the same…”

As always, this content is copywrited and may not be used without my explicit permission.

Grief Demystified..

Please see my previous post about why I had to delete several of my informational blogs. In the meantime I’ve been busy putting all of the information from them, plus a whole lot more, into a book comissioned by Jessica Kingsley Publishers.
The book will be called Grief Demystified and explains everything you’ve ever wanted to know: do men and women grieve differently? why do we grieve for famous people? how do I know if I’ve grieved properly? and what to say to the  bereaved, plus many more questions answered.  It also includes a list of recommended bereavement organisations that provide online resources, offline support and signposting.  It also includes an extensive list of references if, like me, you are interested in furthering your knowledge in grief and bereavement from the experts.

And best of all- there are diagrams and photos for visual learners and the easily bored 🙂

I shall write more blogs soon about the myths that still pervade on social media, because I keep seeing misleading articles and outdated information…

#Life.WhatTheF#ckIsThis.Death

I was delighted to be invited to join the ‘cast’ of #lifedeathwhatever this week at Sutton House in Hackney to talk about my passion: grief following a bereavement.  I was excited for predominantly two reasons; 1. because ordinarily no-one wants to hear me bang on about theories and debunking the myths that still abound about grief, and 2. I wanted to explore the beautifully curated creative exploration of life and death that beckoned.

Sutton House is a National Trust property that is beautifully preserved, and the curators @anna_eol_doula and @poetic_endings have done an outstanding job of adding beautiful installations to it.  One example was a coffin playroom which consisted of coffins full of multi coloured balls for tactile exploration.  There was also an ‘all that’s left unsaid’ exhibition of cards with sentiments written on them such as ‘you said you loved me, you lied’ and ‘you should have knocked and asked to come in’.  This was also an opportunity to examine a pink hearse, drink death themed cocktails and eat a herb supper.

But enough of the interesting exhibition -never one to miss an opportunity, I’d like to share a brief overview of the content of my workshop with you.

The first part of the presentation was exploring the differences between intuitive and instrumental grievers (Martin & Doka, 2010) with specific personality types.  Whilst these are generalities, exploring the combination of variables gives rise to explaining why different people exhibit grief in different ways.  I’ve written about this at length in my book Grief Demystified, due to be published by JKP in 2017.

Secondly we had a discussion around the myths of grief.  ‘Are you over it yet’, ‘time heals all wounds’, ‘you can always have more [children] and the big one: the 5 stages of grief.  For those who are unfamiliar or haven’t checked Wikipedia.com lately,  the five stages of grief were identified by Elisabeth Kubler-Ross as the grief emotions experienced by those who were dying in the 1960’s, not the bereaved.  The model was later expanded by Elisabeth to encompass grief but she was very clear that the stages are not linear and not intended to be interpreted that way.  There are several more modern models of grief that are preferable to demonstrate the reality of bereavement.

Lastly we explored the impact of social media and how our digital legacy affects grieving. The consensus was that the immediate family should have control, and power of veto over who should post, and what content should be allowed to be published publicly.

For further information on this workshop or if you would like to chat to me about running one or attending one of my training courses, please contact me at thegriefgeek@yahoo.com.  I am always delighted to share this with anyone interacting with the bereaved, to the bereaved, or anyone supporting the bereaved professionally.

In conclusion, I would highly recommend a visit to http://www.lifedeathwhatever.com when the next one is running.  The exhibitions and events are life affirming and invigorating and are perfectly situated within an atmospheric and beautifully historic venue.