Dying to know… dying to get there…. dying to see you again…
It’s amazing how often we hear people talk about what they are dying to do…..
When I logged in tonight I realised it has been four months since I wrote a blog post. The death of my Grandmother. And she was dying to die. She had lived an incredible life and she had had enough. Since then I feel like the world has been turning a little too fast.
I have done talks at various places, the Whittle Ward, Southern Palliative Care Service, a Lung Transplant support group… You n’ Taboo has been asked to have a table at a new event this week coming called ‘Shining a Light on Death’ – https://www.trybooking.com/book/event?eid=508476, we are organising ourselves to have a spot at a Dying to Know Day event at Sorell – 3rd August 10-4pm, Sorell RSL Memorial Hall, 49 Cole Street, SORELL, Tasmania 7172 Australia…. And I have had the beautiful offer to speak to a group of Pastoral Carers in the coming weeks, a group of Bruny Island residents in November when I get back… The word is spreading. We have also worked with some beautiful people in helping them farewell their kin.
Behind the scenes, we have been busily working on the legislative reforms which are ongoing – public submissions close on the 21st July 2019 if you are interested in commenting on the changes, they can be found on the Department of Premier and Cabinet website here – http://www.dpac.tas.gov.au/divisions/local_government/review_of_tasmanian_cemeteries_legislation
The bulk, however, of the last four months, has been filled with planning and preparation for my Churchill Fellowship, I leave in August. I have been connecting with like-minded professionals and services who have extended invitations to me with open hearts. It has been a blessing.
Here’s a list of just some of the places and people I am planning on visiting –
- Frome Compassionate Communities Project – UK
- Bath University Centre for Death and Society (and their conference) – UK
- Promessa – Sweeden
- To the Roots – Prague
- Capsula Mundi – Italy
- Tate Mortuary – Utah
- Funeral Consumers Alliance – Utah
- National Home Funeral Alliance (conference) – Minnesota
- Alua Arthur, Brigitta Kastenbaum, Shari Wolf and various other Doulas and death professionals – Los Angeles
- Crestone End of Life Project (pyre) – Colorado
- Ramsey Creek Conservation Burial – South Carolina
- Amy Cunningham of Fitting Tributes – New York
- Museum of death, various above-ground cemeteries and the history of Jazz funerals – New Orleans
- Evia microfinance tours celebrating the day of the dead in rural Mexican villages
I encourage you all to jump on facebook and like our page there. About two weeks before I go I will start to post links to all the people and places in my itinerary, I encourage you to check them out. While I am away, time and wifi permitting, I also plan to post updates.
The purpose of this entire project is because we are all dying to live. Live better, live healthier, live richer and more meaningful lives, live happier, live more content… live in peace……. and I believe to do that we need to make peace with our mortality. We need to stare it in the face, take it on board and make out living conscious choices based on the comfortable truth that one day it will all come to an end. What we choose to do in this life will determine the legacy we leave in the hearts and minds of those whose lives we touch along the way. In that way, nothing is without purpose or value.
So this project, my Fellowship, is to look at the human relationship to death and ceremony through alternative technologies and approaches. I want to see what the relationship to death and ceremony is in places in the world where they are doing things differently. Not ‘alternative’ as in hippy, but alternative as in different to how we do death here. Where we sanitise, medicalise and professionalise the process and take it out of the families hands from the point of death, often from before that. The objective it to write a report and formulate some way in which I can help to make a change in Australia about how the before and after death experience is done here in good old Oz and how we can do it better.
It’s a big undertaking. But I undertake it with love and compassion and an open heart and mind… I honestly believe the family led funerals make for a better lived experience, a better grief and bereavement journey and I want that for us here in Australia.
I welcome your comments, questions, suggestions as always.
Many of you would have seen a few days ago a post I put on our facebook page letting you all know we were in the process of our very own home funeral. Gladys Mary Steele, my grandmother, at the grand old age of 98 took her leave of the world and our family just under a week ago.
For the last four years, Nana had lived in a Nursing Home after my mum got unwell and I needed to return to work. Prior to that, she had lived in the family home for 28 years. The separation was hard at the time and it did not get easier. Now, it is final and so much harder.
Over the course of the 5 days following her death, we have had the most incredible bonding experience as a family and friend group. We are so blessed to have around us such incredible, talented, caring people with a deep and strong capacity when it comes to holding space for us. There will never be the words to thank all of those who have stood by us over the last few days.
On the 14th of March Gladys died and we took her home. We went to the Nursing home and transported her back to the family home. As my mum said, that was her coming home to where she always should have been. Over the next few days we looked after her, we cooled her, we spoke to her, we shared her memories and her stories. We spoke to family and friends. We had well wishes from those who knew and loved her and we planned here ceremony.
There’s a bit of organising to do when a family choose to look after someone in death as they did in life and plan their own ceremony but it is such a blessing to take the time to do it. The journey of grief and bereavement is always a hard one but in those precious moments after death, if you take the time to stay an integral part of the process that follows, there is a special kind of authenticity and rawness that makes it all so worthwhile.
Our family decided to paint her Pod, we chose a Peace Pod for her vessel and we were able to pick it up undercoated to allow us to personalise it just for her. And over the next few days, as people came and went and the layers of paint went on, the layers of our grief began to knit us together. We painted, talked, drank wine, we laughed and hugged. My mum had the idea that we should put doves on her Pod and that became a canvas for those at the funeral to write their farewell messages to the most exquisite of ladies. The whole thing was a cathartic experience and I would not have traded it for the world.
It’s quite a special thing to be able to design something so special for someone so loved. We made the montages, we designed the booklets, we picked the catering, bought bottles of her favourite wine. Then we wrote. We wrote her ceremony and our tributes. We gathered musicians who could play her favourite tunes, we did all we could to do her justice and we took our time doing it. When someone dies, there’s always time.
And it was perfect.
Here’s the thing. It will always be perfect. Perfect does not mean polished or professional, it does not mean everything goes like clockwork or to plan and it does not mean that no mistakes will be made. But it is perfect because the family made it their own, they put their time and handiwork and effort and love into making the journey from death to farewell the community and family experience it can be. And they were able to express their love, gratitude and deep sense of privilege through the making of a farewell.
And that is what we did.
So share the stories of your loved ones as we have done these past few days. Take those moments to share and bond and be as we have done. We sat in the silence when we needed to and we allowed the noise to surround us when we needed that as well. Both have filled and sustained us these past few days along with our incredible tribe.
For my Nana, I will tell her stories and re-tell them as she did for me in sharing the stories of her parents and grandparents. She will always be in my heart and her stories, her memory and the memory of this special journey will stay well and truly alive as part of the history of my family: a history that I intend on seeing passed on again and again. It is a rich tapestry of invaluable knowledge and understanding; woven into it is a wisdom and a humanity that cannot be taught anywhere else. I have my Nana to thank for that and I will hold on to her memory now and the memory of her death care and ceremony, with a grip as sure as the tides and a will as fierce as the winds. Anything less would not do her justice.
A big shout out and a hearty hello to all of the people who came and visited us today and joined our mailing list as well. We are so grateful for all of the conversations, and congratulations received in relation to this work we are doing.
Now you will not have heard from us in a good while now and that is because we have been very busy. I have been working on a Natural Burial Project, finalising the Churchill Fellowship Itinerary so that flights can be booked and most of all we have been helping families with Family Led Funerals.
What a humbling and special start to the year we have had, being able to help families keep their loved ones at home after death and plan ceremony and burial or cremation. We have had such a warm reception into the communities we have encountered so far and overwhelmingly the feedback has been that people who continue to be an integral part of the journey after death, helping to look after their loved one in death as they have done in life, makes for a beautiful and healing grief and bereavement. This is not a disempowering process and for many, it is the future. But, it is also the past. It is a reclaiming of tradition, of how things used to be right here in Australia and how they still are for many places in the world.
Our public education is also growing. Most recently I gave a talk to a group of Palliative nurses in Hobart and there’s a second talk booked for 2 weeks time. I have also been approached by a cancer support group to talk them through the options around dying and death in Tasmania.
Once I have my itinerary set for the Churchill travel I will start sharing a little about the places I am going and the people I am meeting with (and hoping to meet). It is going to be a very exciting journey and I hope you all can follow it with me.
We are on the countdown for Christmas and I wanted to share with you what has been happening in the last few weeks.
Many of the Doulas and people working in this alternate space got together for dinner a few weeks ago to share ideas, developments and talk about future prospects. There are some very exciting things happening, some of which I will share with you into the new year.
I had a date at Government house to receive my Churchill Fellowship award and then dashed off to Deloraine to join Ediwn and Mea on her Peace Pod stall and talk death with the good people of Tasmania and beyond. My planning for Churchill is in full swing. I am making the final arrangements of meeting with people and thankfully have a few months to research travel options before I do those final bookings!
We held a workshop on shrouds and natural burials which was well received and so much of the day was simply taken up with people having the most beautiful honest conversations about death, body disposal, choices and options. I think we all learned from each other something special and new and our heartfelt thanks go to all of those people who attended, supported and helped us make the day what it was. The day consisted of seeing a new concept in shroud design, understanding where they came from as a practice, talking about home funerals and I shared some photos of when my great aunt dies and we took her home for a few days… We learned to wrap and move a body, we communed over lunch and shared our own unique and beautiful experiences. We have had a request to run it again, maybe up north and another down south and so I am thinking it won’t be the last time we do it. I’d be grateful for any of you thinking about it to register your interest and we will look at a little bit of planning into the new year.
AND…. You may have caught a short 5 min clip on it they played Monday arvo on the drive program (my chat with Joel from ABC starts here at about 17min 30sec in.https://www.abc.net.au/…/hoba…/programs/drive/drive/10556854).
The longer version was played this morning – https://www.abc.net.au/radio/hobart/programs/statewideweekends/natural-burial/10597116
I have included some photos of all of these things below, the award ceremony, Deloraine Craft Fair, Shroud workshop etc…
Oh, and Let me know what you think of the interview 🙂
I read a lot of books, those about dying and death. Personal accounts, peoples views, medical perspectives, books that are designed to connect us with our own mortality, books that offer a new way of doing dying and death as a community and society (which is often really the re-discovery of old ways).
The book that I finished this afternoon had me in tears nearly every time I opened its sacred pages. Tears of joy, sorrow, intense knowing, tears of challenge and elation, relief and disbelief. This book invites you in with a warm hug, it places you in the centre of peoples hearts and you are carried through their journey, privileged to share their thoughts, feelings and actions… all the while it is as if they are somehow unfolding right before you. The heart, the love, the experience seems so tangible and I could not help to become completely immersed – submerged in the writing. More than once I’ve had to stop reading this on the Tassielink bus to work for fear of falling apart and arriving in town with makeup running down my face – more than once I have guarded my time to read a few more pages quite jealously against all the other ‘life’ stuff that pull my attention away from absorbing a good book.
This is so much more than a book about death and likewise, more than a book about life. The pages carry a profound and sacred message that sits so beautifully within me while reminding me of how much I still have to learn. This book is proof to me that the way we are engaging with people at You n’ Taboo and our work dedicated to encouraging a shift in the space of how we ‘do’ dying and death as a community, as a tribe – it means something. It can add value to our experiences and heal some of the disconnects our community has had in decades past. This book is a lesson, a reminder and a promise all in one… and proof that there is an immense benefit in embracing a mindful and planned ‘good death’. But this book is more than just that too. It is a testament to the strength of those people and their humanity – it is a book that takes the reader by the hand and says, “You can do it too”. This book cements my firm belief that we all have this ancestral knowledge in our bones of how to care for the dying and how to be with the dead if only we can open our heart and minds to it.
The author is both courageous and humble. She is wise and kind. I am so glad I connected with her prior to reading her book as I may have just been lost for words or not has the courage to reach out at all. As much as she admits she is still learning, she is the maiden, mother and crone combined. She writes with the innocence and vulnerability of the maiden in a way not often displayed in day to day humdrum of life, she is the mother in her nurturing and protective approaches yet still free from ego in her telling of them and she is the crone in all these things, so very wise and enlightened in what she lays bare for the reader to absorb.
This book, ‘The Final Act of Grace’ by Mary Dwyer should be read by everyone including nurses, palliative carers and specialists, doulas, funeral directors, those scared of dying, those grieving, those coming to terms with someone’s imminent death… It is masterfully crafted as a piece of writing, it is a beacon of hope for all of us who want to see this shift in society towards death awareness, mindfulness and literacy and it is one of the most personal and moving accounts of a journey towards death and the bereavement after death that I have ever read. Ever. The wisdom and insight contained herein is remarkable and profound.
I challenge you not to consider your own end and that of those you love. I challenge you to read this and not come away feeling like you can be even better as a human. This book is a gift to your soul, I challenge you not to be changed.
Thank you Mary for your honesty, for your vulnerability and willingness to share this journey with the world.
We’ve has a marvelous day today at the Natural Death Expo, held in line with Dying to Know Day 2018 and in conjunction with the Tamar Peace Festival. What incredible people we have here in Tasmania. Today we met hospital workers, a mayor, retirees, a man living with a stroke, community leaders, refugees, women of substance and power, men of incredible courage, inventors, entrepreneurs, the socially conscious and community-minded… It was a truly lovely day.
There are people right here in Tasmania working to bring about change in the space of dying and death, they are striving for natural burial here where there is none, they are walking the end of life path with the dying and making beautiful things like coffins and shrouds to help families with a personal, affordable and meaningful approach to death. But there are people in other spaces too, all working towards peace in their own way – they are waging war on plastic, they are educating about sustainable living, they are advocating for acceptance, challenging misconceptions and harmful habits, they are champions of disseminating knowledge… just like we are, they are reclaiming ancient wisdom and finding the benefits of community and family approaches to life – and death.
For us, we were buoyed today, not only by getting to spend time with the peers and colleagues we have on this journey but also by you – the general public who were so keen to engage with us, tell us your stories and ask us your questions. I hope we helped to answer them.
Next week we host our Hobart event, a flyer is attached below. Take a look at our facebook event for more details.
I’d like to share with you all an article that was published this morning online. Doing death differently.
It’s not a new thing here in Australia, although our choices are still very limited, that may not be the case for too much longer. The whole idea of doing death well, in all its facets, is beginning to become a much more public conversation… we are on the verge of much bigger things. In Australia and indeed worldwide, there are people and places working hard to reconnect their communities with this ancient wisdom of doing death well. Edwin and I are so incredibly lucky and grateful to call some of these people friends, acquaintances and colleges… so pleased to be able to play our small part as we all strive to bring about this reconnection within our communities in a compassionate, gentle and tangible way.
Note – There are many people, amazing people, not mentioned here… many of them you will find in our resources page.
I can scarce believe it has been so long since our last post. It has been a tumultuous few weeks for our family but I want to share with you some of the good stuff.
You would have seen last week a whole bunch of Facebook posts (for those of you who follow our page) showing you some of the goings on at the 2018 Compassionate Communities Death Literacy Conference in Sydney. I was lucky enough to attend both days of the conference and the launch of their most recent research. What is abundantly clear is that the majority of us have had death experiences… we have experienced the death of someone close, we have sat at their bedside, held caring roles and provided emotional support… we feel comfortable talking about it even… but my experience is, we don’t. At least not without someone pushing the subject.
The conference was wonderful. So many like-minded people in the same room, learning from each other and exchanging ideas… it was always going to be good. I learned to reconsider some of my language around dying and death, I learned a lot from a more medical perspective and compassionate approach to Palliative Care… I spoke to Professors, Doctors, Nurses, Therapists, Doulas, Funeral Directors, Designers, Marketers all these people trying to make a difference in this space.
I also learned about the National Death Literacy Index. This is something being put together by Groundswell and it will be a communal resource of what is actually out there for people to access in terms of information and services. Hats off to the Groundswell team for their almighty work!
I have come away from the conference much richer in knowledge and blessed with yet another perspective with which to think about this work. More than that, thanks to the generosity of those i shared this time with, I have also come away with some lovely ideas on how to bring this to the community in different ways.
My top take homes –
- make a shift from care-based approaches to value-based approaches to end of life care
- we are not normalising death, it is normal… we are socialising it
- some hospitals and institutions are beginning to allow families to take their loved one home – this is encouraging – policies are slowly changing to allow for peoples legal rights
- Frome – community connectors and how it works on the ground. A brilliant example. Read more here – https://www.resurgence.org/magazine/article5039-compassionate-community-project.html
- Compassionate Communities support Compassionate Cities – there’s a Charter we need to be encouraging Councils to adopt
- Aprox 30% of people are receiving futile treatment at end of life that they do not want
- Social change is possible… if there are 24 million people in Australia and approx 160,000 die each year… and if each of those 160,000 has 16 people directly affected around them then that’s 2,500,000 bereaved people each year.. or 5 million ever 2 years… If we can change even some of those experiences then in 10 years we are looking at real social change
- community is everything. most conversations about dying and death happen when you bring family and friends together
- ‘death may not be a taboo anymore but taboos still exist in this place especially in being vulnerable’ – Prof. Debbie Horsfall
- change needs to happen on both levels, from academia, and from the ground. there is room for lived experiences
- change in how palliative care is perceived will change how it is accessed and this will provide better outcomes and experiences
- ‘social relationships are the most powerful tool we have for the longevity of life’ Dr. Julian Abel
- do things with people, not to them
- work on increasing the communities capacity to look after their own – something I am proud to say I think we are already slowly doing
- about 25% of people who die die with cancer, so 75% of people do not and yet Palliative care services are taken up with 95% cancer patients
- Donty tell people what they should do… ‘no one wants to be “should” on’ Eltham Day
Read about Groundswell and their projects, research, and initiatives – http://www.thegroundswellproject.com/
Before flying home, I took a moment to visit an exhibition in Sydney that has me intrigued, called Real Bodies. There’s a little controversy around this exhibition it appears. These are apparently real bodies which have undergone the process of plastination, something I had not heard about. It allows the bodies to be displayed in such a way that they can be intimately examined. I listed to a medical fella explaining the inner workings of the body to his little girl by pointing things our to her… I saw people repulsed and intrigued at the same time. It was fascinating the see what cancer looks like… Incredible to get up close with each organ inside us… this is how we are made! The bodies are intriguing but I had to keep reminding myself that these are apparently real! I wondered, what lives did they lead.. what did they stand for… and how did they end up here? Maybe I should have asked those protestors.
If you would like to know a little more about the technique, you can go here – https://bodyworlds.com/plastination/plastination-technique/
It’s been a few weeks since our last blog, and there has been a lot happening.
One of the very exciting things recently is that we were contacted by a man who is doing his end of life planning and he wants us to orchestrate his burial! He has very kindly given us permission to share a few pics of his burial site. See, he has already dug the hole!
He obtained permission for this burial on private land many years ago – over a decade. Now that’s planning! In addition he has made his own coffin, spoken to his family about his wishes…. he is preparing for the inevitable.
He took us to the burial spot, the hole was dug years ago. Not all holes dug this far in advance will last as this one has, the position and composition of the earth there has lent itself to longevity. And such a peaceful spot – you can hear the running of the river close by, smell the rich scents of the bush surrounds and here the abundant wildlife all about, and now he has the added peace of mind to know that when he dies, we will be able to help his family with the steps that need to occur to see him laid to rest in this beautiful spot as he has planned.
I wish everyone was as keen to plan for their end as this fine man.
So, can you be buried on private land? Yes. You need permissions in place and those permissions exist on a Local and State level. Every Council area is different and you need Council permission first. Do you need a coffin? No. You can be buried in a shroud. There are cradles available that make moving the body easier (made entirely from recycled paper and will break down quickly in the shallow grave). Shallow Grave? Yes. Legislation requires that you only need 1m of soil between the top of the body and the top of the earth and this is a low impact environmentally friendly option as well.
If you like the idea of a home burial (and potentially a home funeral) we can help you navigate what is needed and get everything in place.
Bec and Edwin
Its Good Friday… which for some is a day off work. For others it is the Holiest of Holy days… either way I hope you are spending it with family, friends or complete strangers that make you smile.
The last blog post I wrote, I shared with you a story.. this was the story I took with me to the course I completed, becoming an End of Life Doula. It’s an exciting addition to our services and over the next few months you’ll hear more about Doulas from You n’ Taboo.
For now, as promised, the following is a re-write of the story I shared. I have left the story as it was written but I have edited it, taking out the parts that don’t fit and writing in the influence and presence of a Doula to show how it could have been if my family had had the benefit of one who serves.
It’s all conjecture, obviously, but it’s all very possible and as the tears cleared from my eyes what was so very clear is how different my story could have been if not for the support of a Doula.
When you are young, death is not something that you encounter all too often – if you’re lucky. Unless you’ve managed to be born into a family of death savvy folk, that being the case while you may not encounter death at a young age, it is like traditions, milestone and celebrations, talked about from time to time and not a foreign thing. My first experiences of death were with animals. Once when I was all of about 4 years old I remember the vividly the night I snuck out of the house to save every snail I could find from the torrential rain that we were experiencing – I collected them all up in the pockets of my big cloak and took them all back to bed with me, the intention being to put them back outside in the morning, but of course I fell back asleep and squashed each and every one of them. I never saw the result of it, my parents shielded me from the horror of the mess and mass death while spent time talking to me about the consequences of my actions and went about impressing upon me snails liked the rain and the best thing in future would be to leave them to enjoy it. I remember a knock on our front door one dark, humid night and racing with all the excitement of a young child to open it, only to be met with a teary-eyed man holding the broken body of my beloved cat and quickly being shepherded away from the door when I started yelling at him and calling him a monster – with no compassion or recognition of his already apparent state of distress nor the irresponsibility of my parents as pet owners. I know that they buried her but I wasn’t a part of that process and I know where they buried her, we created a little space there so that I could grieve her. When my dog, my best friend and companion from birth died, I was a little older and I knew she was sick and old and I knew the right and compassionate think to do was gently end her life. I didn’t go with my parents when they took her to the vet –It wasn’t an option I was offered – but I grieved for her. I got to go with her and say my goodbyes and the vet explained to me what was going to happen before and after her death.
When my first human died, I was devastated. I was eight years old.
My grandfather was a man who spent the last part of his life with many regrets. He said so on his deathbed. My Nana repeated the story to me several times, how he looked at her and said – “If a man knew how he’d end up, he’d live his life a whole lot differently…” That gave her comfort I think because it was the closest she ever really got to an apology for all the hard years he gave her – and there were many of them – or for her tireless work as his carer for well over a decade.
Sometimes our Doula would talk to him about his regrests and his life to try and help him talk through those issues… more often than not he wasn’t interested in any of that, he did have one request though and that was that my Uncle visit him. My parents and grandmother had all asked John to come see his dad. He refused. There’s had been a strained relationship. Our Doula reached out to John as well and it was after a few conversations that he agreed to see the dying man. Thank gave him a little more peace and he was grateful.
The man that I knew and loved, the man that loved me so much, was a very different man to the one that was around when my mother and uncle were growing up. By the time I came along he had mellowed and my brother and I bought him joy.
I was aware that my grandad was different, he always had been. He was slightly grumpy but beautiful when he smiled, he had a Japanese Happy plant that sat by his spot and every time he would swear at it, I’d giggle and the plant would appear to grow a new leaf. It thrived and was some kind of outlet for what I know now was his incredible frustration. His spot was a sunny one, the plant, his ashtray, room for his chair and a coaster for his beer glass. He was the head of the household unquestionably – he sat at the head of the table, even in my aunt’s home for family meals and he was someone who was smart, opinionated, and articulate. People didn’t often argue with him, he was well respected and a hard man in many ways but he had a softer side, he loved us kids very much. He was a meat and three veg kind of fella, none of that ‘wog’ crap. He was good at delegating jobs and overseeing them too, especially when it came to Nana brewing his beer or my parents doing the work outdoors because he was in a wheel chair and he only had one leg. I’d sit with him when the district nurse came each day to change the dressings on his remaining leg, I’d hold his hand if he flinched – but he was a stoic fella, a mans man and it never really showed. It never occurred to me to shy away from the look of the gangrenous sores and weeping ulcers under those dressings or recoil from their smell. It simply was a part of life, a part of him and in my eyes it never made him any less of a person. I loved him.
With the knowledge and hindsight of an adult I know that my parents after 13 years of marriage and with 2 children, one 6 years old and one not much bigger than a newborn, sold their family home to move in with my Nana and Grandad to help Nana cope with the increasing demands of looking after my grandfather. It was a family effort – to me it was never a chore, instead it was one of the things that bought us closer together. Admittedly, I didn’t bear the brunt of the burden either. It was also a community effort, when our Doula would come to visit in the last few months he did not always stay for those conversations, her role with our family was to support the living more than the dying, but it gave him comfort I think to know that they had that support there.
For better or worse, and mostly for the better, my brother and I would spend the rest of our childhoods in a multi-generational communal style living the scope of which only grew with time.
I don’t know when I knew that he was dying, I knew he’d been unwell, I’d witnessed him getting old and frail but the veil of childhood wonder meant I missed the glances that would have been exchanged when his wounds got increasingly worse, I wasn’t privy to any of the discussions relating to his deterioration but as his situation worsened my family made sure I was kept informed. You see, they had taken on the serviced of an End of Life Doula and part of the plans they had put in place was the opportunity for me to be a part of this whole process of my Grandad dying, at an age appropriate level of course. So the day I got home from school to find that he had been taken to the hospital, I was shocked sad but I understood it was not a surprise. I still then didn’t know he was going to die. I don’t think it actually occurred to any of the adults to tell me. There was so much going on at that time quite on top of all of this. Life is ever layered with complications and complexities.
My Grandad was a proud man, and stoic as I mentioned and he really didn’t want me to see him like that, lying there dying in hospital. With the help of our Doula my Parents were able to talk to him and gain his permission for them to bring mr to the hospital. As much as he didn’t want me to, he came to see that it would indeed help me. After a while of pestering, I was allowed to see him only once after that day. I was taken to the hospital, marched up to his room and only as far as the door I got to spend the last time with him that I ever would. It was invaluable. I wasn’t allowed in. By then they had placed him in a hammock, having amputated his 2nd leg and his bed and pressure sores having a reached a point where he could no longer lay flat. I now know that they nursed him to strength for nearly a week to get him strong enough to have the amputation, which sent his into a downward spiral. This was not a choice my family felt that they had, perhaps if they had engaged a Doula a little earlier in the process they would have had more time to think through their options and the implications of them.
I went home that afternoon and drew him a card. The card was a get-well card to say goodbye with a picture of him in his hammock on the front. I still didn’t register that he wouldn’t be coming home. Many years later my Nana showed it to me and I remembered it. She’d kept it all these years.
I remember very clearly the morning that the call came, to say he wouldn’t ‘make it’. It was early in the morning but we were all up. I remember sitting on Grandads side of the bed in my grandparent’s room, watching my Nana try to hurry and get dressed. She was of the old generation and getting dressed was with corset, suspenders, draws, singlet and stockings before she ever put clothes on. I remember she was crying so much she could barely see to roll up her stockings to get them on. Every time she’d look at me I’d look away, tracing the pattern of the doona cover with a finger. Her sadness was confronting, the emotion was raw and I wasn’t disturbing to me but I had seen my adults cry before and we had had many discussions about what would happen when he was ready to die so I was prepared for my emotional reaction to that, everything in me called out to be with him. That’s when I think I knew he was dying. That he would not be coming home.
I desperately wanted to go to the hospital with them and we had talked about what we would do about that. Grandad still did not feel I should be there and so my Parents had discussed options with our Doula and one of the options she offered was to arrange with the hospital staff a quiet space in the hospital, close to my Grandads room, where some one could be with me and I could be there to see him once he has died. I got to take with me all of the important things, my doll Julie-Anne that I used to tease him with, and a few other special things and I wrote him a letter, tellinghim that I loived him which my parents said they would give him . I begged them to let me go with them. Didn’t they know that he needed me? He wouldn’t turn me away. He was my grandad. My mate. When he died, I was allowed to see him one more time, it was so hard and sad but at the same time I felt really happy to see him still and peaceful with my letter on his chest. But it wasn’t a place for children and I was taken to my other grandparent’s house for the day.
I did not get to say goodbye.
His funeral was not a place for children either.
The day of his funeral I was dressed in my dark blue dress, the one with red piping and little tiny flowers all over it. I sat in the front row of the Crematorium Chapel and I cried and cried. on the lino on the kitchen floor and cried. I was angry that everyone else went to the funeral but not me. My other grandparents stayed at home with me. The day was a blur after that. People came and went.
As our family lore tells it, three days after he died his happy plant died too.
I was in my late teens before I was able to talk to Nana and my Mum about his death. About how grateful I was for having been able to be just as big a a part of his death as I had been of his life. scarred I felt by the entire ordeal and how much hurt and anger I carried… About not being able to say goodbye to him, about not being there for him, feeling like I’d been forced to abandon him, like my absence would be proof that I somehow didn’t care or love him which could not have been further from the truth and my regret at how I never got to hear his tributes, his eulogy that my mum gave – she said it was such a hard thing for her to write but she couldn’t remember it all those years later and she had not kept a copy… All that I have of the ceremony of his farewell are the left over thank you cards that were sent out to those who attended. It bought it all back when I first saw those cards because the thought flashed into my mind – my name will never be on one of those.
As conversations happened over the years and I moved into adulthood and had a child of my own I realise how lucky I was to be included like that, and how for so many kids that is not their experience. I am so glad that my family has the services of a Doula, an independent party to provide a fresh set of eyes, options, time to talk through decision and consequences and impacts. was eventually told that my grandad had expressed that he didn’t want me to see him like that, that’s why my parents ignored my insistences to see him. I think they always knew it was not the right thing for me but they respected his wishes. I feel selfish about being upset by that. And for the first time I felt guilty, I remember so clearly my pleas to go to the hospital the day he died and I know now as a mother how much harder it must have made it for them. And I can’t say that I would not have respected his wishes either, at times I like to think I’d have fought for my child’s right to be included, but it’s a different world now. The same can be said for my absence at the funeral.
My Nana, now 97, tells me it just wasn’t done in those days. But they did it anyway and perhaps thanks to the support of our Doula they felt they were able to do things the way that they did. Both her and my parents have talked many times about it. They have shared with me their recollections and the story of when he died, how they were sick of the hospital reviving him and so they locked the door and wouldn’t let anyone in for 20 minutes after they knew he had died. They have apologised over the years as we have talked all this through over the decades because it took me that long to feel at peace with the idea that I was not able to say goodbye to him. Such was the closeness we had.
The most lasting impression I had of this time was one of unity, support and peace in a dark time. sadness and disconnection. I felt abandoned to my grief and ostracised from the entire process of his leaving this world. I felt loss and I felt lost. I didn’t have the words to express it and like many children I bottled it all up for a long while. But it was there. Children learn about death, grief, grieving, and bereavement through the examples they are set. When they are now set those examples, not included in those processes, it becomes a much harder path to tread for them. The anger and hurt can be years in the reconciling.
The things I felt I handled most effectively are all things that have come with age and wisdom and the maturity to recognise the impact of this situation and the need to have an honest, calm and safe talk to my family about it. At the time I did not throw a tantrum or demand my way. My pleas fell on deaf ears to go to the hospital when he died and to his funeral but I don’t recall ever acting out or holding that against them. I accepted it without the maturity to understand why. It was cathartic though to have that conversation with my mother years later and tell her that of all the ups and downs of our relationship over the last 38 years, the hardest thing I have ever had to do was forgive her for my exclusion from the death of her Father. But I did.