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A re-write!

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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.


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