Gone upstairs

a personal journey through grief and change


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Dying no more

It was when the nurses washed him that his breathing changed. We were all in the kitchen while they did the morning bed-bath, but I peeped through a crack and saw my beautiful naked son being gently washed in the way I had been taught as a student nurse nearly 40 years before. A minute later they covered him up and called us into the room: “His breathing’s changed, you should come in” Was this ‘it’?

We all swap places – the nurses leave us round his bed.  Becca and I stand on Sam’s left, Martin and Sam’s grandad on his right, holding his hands and arms. His eyes are closed, his face composed, but he is definitely struggling to inhale and exhale. How hard to let this process run its course – how can this be happening? Hardest for the medical man who had been trained to bring people back from the brink… But Sam has a red sign in the kitchen saying “Do Not Resuscitate” – the brain we cannot see has already done it’s fatal work. Despite that fact we speak  our love and comfort to him, not knowing if he can hear us: it is our only way to say goodbye.

Within a few minutes his breathing stops… “the breath returns to God who gave it” “Into Your Hands we commit his spirit”. His pallor gradually turns to blue, then purple – there is no oxygen in the blood but his strong, young heart is still pumping it round his body. Oh God! It is too much – his head and shoulders rear up from the bed and we all jump. Martin says, “Don’t worry that is normal” – death throes as the body relinquishes it’s life, so horrible to see it is still the worst moment of the whole thing. He falls back to the bed lifeless and all colour quickly fades to white, then waxen…

Dying is nothing like death itself. Dying people are still with us, but death means GONE. It is a totally different feeling – even though you know it is coming you cannot really prepare for it. Sometimes people talk of heavenly experiences, feeling there are angels in the room to guide the loved one home, but for us it wasn’t like that at all: Sam’s death was traumatic despite his unconscious state. The hands we continued to hold went cold. Rebecca in her terrible distress immediately left the house to go and cry in her friend’s arms. Martin’s dad went back into the kitchen to make tea. I looked at my watch, to know the time of death…

We all react in different ways. I am sure Martin was weeping. I sat very close to the bed and put my cheek on Sam’s. It was cold and the skin had changed: he was a corpse. I whispered my love one last time, but there was nothing to be done: Sam Dyer had left the building. We relinquished his body to the nurses for laying out, dressing him in his favourite tee-shirt and shorts for his long sleep in the earth.

I was numb: now there were things to do. I went straight to the funeral directors to get advice and organise what had to happen next – but I’m not going to write about that now. (See this post for the overview I did write one month later when at last I felt able to communicate something.) I left Martin waiting with the body for the doctor to come and certify the death. When he came our lovely GP cried over the loss of a young man who had been so full of life…

That was the question uppermost in our minds: What had happened to all that life? That strong spirit? HOW could it just be snuffed out because it’s container had worn out? Surely we believed he had gone into the spiritual realm – to meet God?  But what actually does happen when we die? Where was Sam now? It made me cringe when well-meaning friends said things like “he is safe in the arms of Jesus” – it seemed so unreal, wishful-thinking, imagination, generic gobbledygook – no comfort at all. It doesn’t say anything like that in Scripture! However, something that really did help, was someone who didn’t know us at all who had been praying for us – how amazing is that on its own? – who had a vision of Sam drumming his way into heaven with great joy and gusto! She had no idea he was a drummer… I loved that! 🙂

It is all so much a matter of faith in things unseen, convictions being tested at the point of crisis. All we really knew for sure was he was and is no longer with us… But we refuse to use words like “passed or passed over/on” “gone into the next room” – yuk! things that take the finality out of this loss. It has to be called by it’s name: DEATH.  St Francis called her Sister Death – a close companion through our lives, a friend who takes us in her arms at last, a rest after a weary, long day. And we admit Sam’s death was a release for us as well as him.

In fact we do not begrudge the timing, his young age. I’ve blogged abut these last 10 days because they were so amazing and full of grace. It was a good death! He lived his 27 years to the full and had many great experiences: he used to say so himself. He told his sister to say at his funeral (and I quote!) “Fuck you, I went to Hawaii!” – which of course she was delighted to do! He also used to say he was actually glad all this had happened because of all the good that had come of it – the healing in his own life and in our family! Acceptance has to come if there is to be any peace in life  – and in the end it is all about this, from Fr Richard Rohr:

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At the time I needed something to hang onto and the gospel story about the thief on the cross next to Jesus came to mind. As they were both dying, this man said to Jesus, “Please Lord, remember me when you come into your kingdom!”  and Jesus’ immediate response to this wicked man – who had simply acknowledged that He actually had an eternal kingdom and nothing more – was “Today you will be with Me in Paradise” Sam did acknowledge my Jesus, despite all the other paths he also took. Apart from that I know that my God is Love and that definitely includes my children as well as – in fact – I believe it includes the whole world. Unless someone downright refuses, they are given access…I cannot help believe Sam is ‘in’! As a wise friend said to us later: Sam is in our future

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“Goodnight, sweet prince, and flights of angels sing you to your rest”

My son is dead, long live the memories – my baby boy, our cheeky little lad.

I cannot list the precious moments that I treasure in my heart: “My mummy, my best thing” he said at nearly 2 – “I love you mum” he vowed before he died.

Now he lives on, his childhood laughter, mimicry and humour, that quirky character and stubborn will – his face in photographs and dreams, held in our hearts.

 

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Our son is dead, long live the legacy – our drummer boy, so totally unique

His struggles and the anguish of his youth, a life cut short, the battle that he bravely fought out in the public gaze, his words and love and courage stamped on many lives.

They still live on – online, on You Tube, TV and in print – a shooting star that blazed across the sky and fell to earth.

 

My son, my dearest Sam, is dead – long live the LOVE

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Into unconsciousness

Monday 24th November – the day Sam began to leave us. These last 2 posts are going to be pretty hard to write… Over the last week the blogging process has done its work in me, uncovered buried anger and enabled those  suppressed tears to flow. Looking back at my lovely, infuriating son has been both a pleasure and a pain – but now I must say goodbye to him once more. The end of Sam’s story is unavoidable – none of us can escape death no matter how long we defy it.

I think that is partly why I want to write about it – to force other people to look it in the face, accept reality and their mortality. We live in the one part of the world and the one time in history where we do not have to face it regularly so we almost forget it is there – something to be considered and planned for – until someone close to us or perhaps someone famous dies. Death horrifies us and we fear it – even those with faith in life beyond seem to avoid it at all costs. Sam was not afraid, though part of him was still defiant and in denial – he was ready to go into Spirit, as he would have put it – or even just to go to sleep if that was all there was. Of course he wanted to live, to follow his dreams and fulfil his potential… isn’t the loss of all that the problem, isn’t that what dying is all about – letting go?

We had to let go as well. On Saturday we had committed his spirit into God’s hands and now we had to go through the process… It was the last night of the nurse watch-women – they only cover the first 5 out of hospital. I don’t think they reported anything different when I arrived, but I soon foundimg_2833 that Sam had a bad headache and felt sick again. He was really suffering and I knew it was time to call the emergency number for hospice at home…

The nurse arrived quickly and set up her station in the kitchen. She was kind and efficient: it was a relief. I was sent to a local chemist in a backstreet somewhere to collect a pile of controlled drugs while Martin sat with Sam. He wasn’t talking much, but that must have been when he said “I wanted to show you a man who defied death” They were, appropriately enough, his last words to his father.

Martin phoned to call his own father, brother and Becca back to Loughborough but it would take them 4 hours to arrive. When I got back with the medicines the hospice consultant had arrived as well – the little house felt very full. I sat down next to Sam and held his hand as he waited for relief. They were drawing up morphine and an antiemetic to give him when Dr Feathers called through: “We can give some steroids as well if Sam wants it” Sam heard that, looked at me and forcefully delivered his last words to me: “No Dex!”

img_2834I went into the kitchen as the syringe was administered, into his left arm. He could obviously still feel on that side because he complained loudly when the needle went in! The morphine quickly had an effect and he seemed to go to sleep. I sat down with him again. It wasn’t long before I thought I would check his pupils – I don’t really know why. He was peaceful, breathing, looked comfortable. But I found his right pupil fixed and dilated while the left one was small. Immediately we knew the tumour had bled once more and this time fatally: his brain had given up – he would not wake from this sleep again.

The saddest part was that Rebecca had not been able to say goodbye. He had called her on the previous evening but she had missed the call and Sam was already unconscious when the family finally arrived. Not that any of us actually said goodbye: Sam did not know what was happening and simply slipped into a sleep that took him all the way down into darkness… or light?

When is the moment of death? He was still breathing, his heart was strong. We had to wait for final breath and heartbeat: our vigil had begun. Of course it all seemed unreal. Dad and Richard were in the kitchen with the cats and newspapers. The nurse called a colleague to lift him and turn on his side. Becca called a friend to come and we called our lodgers. Young Ben came to join us and wouldn’t leave… So much love and support, texts and prayers, grace and peace. Scamp sat on Sam’s bed and went to sleep next to his master’s legs.

I can’t remember the hours of that afternoon and evening. We must have eaten, talked together, sat and drunk endless cups of tea around the prone shape of our son. We talked to him, not knowing whether he could hear. The nurses were endlessly comforting as they cared for him. Eventually Dad and Richard went off to stay in a B&B and the 3 of us were left – with Ben, who refused to go home to Burton St. He slept on one of the sofas and we 3 squeezed into Sam’s bed upstairs.  I prayed we wouldn’t be in limbo for too long.

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Sunday

It’s Wednesday 23rd November, but I keep thinking it’s the weekend because it was…2 years ago. I am travelling in both time zones at the same time, re-living the emotions, seeing my son’s face in the air in front of me. This is what I wanted to happen – to bottom out some of the stuff I have ignored and find out how I really am. 2 days ago I woke upblogger realising I’d buried so much anger – for years, since childhood when my mother died and I just had to get on with life without one.  Anger was a fearful thing, not allowed… my father held all the rights on that one, losing his temper and shouting at us until that is all I can remember. I was saved when I was sent away to school… But I buried the cry.

So the motherless child also loses her son – plenty to be angry about! But no – I have accepted it. This happens in life – other people have a much worse time of it… of course they do. I have nothing to complain about, my life is blessed and I am loved. Grief doesn’t know this. Anger has to have it’s part – resentment that it isn’t fair has to be felt and acknowledged before it can be dismissed… So there it is: I can name it. I lost 5 years of my life to Sam’s brain tumour, worrying, trying to help, caring for him, being a servant and sounding board. He was often nasty to me – to us – resented us, blamed us… “You brought me to Loughborough and I hate it!” “You sent me to school!!” “You hit me!” – sorry, that’s what we were taught to do back then… 😦 “You argued with Rebecca and frightened me!” Sorry, sorry, sorry… that’s all parents can say. We can’t change any of it, please forgive us...

We were reconciled before the end. We were forgiven and forgave. Only now I recognise some of the cost to myself, but I bear no grudges toward him: to face childhood hurts is to grow up. I am not angry with God – but perhaps I am angry with myself…? Whatever it is, I choose to release that resentment, recognising that many of the choices I made were exactly that – my choices, me trying to make things better. No-one made me a slave to his suffering: yes, my life was forever changed, but it’s alright – I’m OK and I still have some life left to live…  Life isn’t fair and shit happens – get over it. Processing, processing, the little wheel is turning in my soul as grief works it’s way out… I see his face in my mind’s eye – the pictures I have posted here – and I can weep at last.

On Sunday we were getting very near the end – but we had no real understanding of that. I spent quite a lot of time with him – he was in a good mood, wanted to talk about The Imitation Game, what it was like to be so intelligent, socially awkward, misunderstood… Sam wasn’t gay but he felt ostracised for all sorts of reasons. I’m sure had he not had this disease he would have been brilliant at something: I’m also sure he would never have fit into society, had a 9-5 job or been in any way ‘normal’! It is so painful to me to know how he felt as a child, bullied, rejected as different – how he would hide in the library from the other boys and simply couldn’t accept the system. How could we know what was going on inside that brain when he didn’t tell us? When we moved to the Midlands he hated the Grammar School – which was opposite our house and we thought would help him achieve what he was capable of. He couldn’t stand the uniformity and ambition and tradition, the sports and forces afternoons… all those fees for 9 GCSE’s and an angry young man! Yet he found a way through it all and was at peace before the end: for that I am eternally grateful.

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He transferred to the local college for 6th form and eventually found a couple of friends who suited him far better – James and John. James had been to the hospital on the first day and back to the house a couple of times since. This is John, visiting Sam for the first time for 2 years. They were so happy to see each other! Sam used my computer to show John what he’d been studying about business and presented a small (but large!) hard-drive: “John, this contains everything I need to get my multi-million dollar business off the ground!” Maybe it did – he had been collecting material for long enough. Not many days later I put that disc in an envelope marked with his registered company name: AIRBORNE MARKETING, HEAVEN and it was buried with him.

Meanwhile, he hadn’t forgotten it was Sunday, the day of our agreement, and rather sheepishly said that actually this bed in the front room was rather convenient and cosy! In the afternoon he entertained another visitor from his regal position – a friend he hadn’t seen for a while who’d moved away. We’d done our best to let all those who had invested time in Sam and been close to him know what was happening and their visits and phone calls made those days really special. We had always hoped and prayed that when the end came he wouldn’t be reduced to a wheelchair and dependency as so many with brain tumours are – that it would be quick and painless. But this way was the best of all – long enough for family and friends to see/talk to him one last time, long enough for us all to adjust…

I was a lovely day – reminiscent of the Sunday a week before when we had all sat watching Lord of the Rings. The roller-coaster had made a few climbs and dives in between! Now it was approaching the end of the ride. That evening was an extraordinary precursor to the finale, as Martin came in to spend the evening with his son and I went home to bed.

Their relationship was never easy – the father working so many hours. He adored his little son, full of character and smiles, obsessed with ‘muke’ and later Star Trek, computers when they arrived. He would do anything for him – but despite that the resentments grew, as they always do in teenage years. “You are my father, not my doctor” – a line drawn at the start: so much pain for the impotent doctor. Yet the boy began to soften, open up, talk… and past issues were exposed and gradually cleared away: love triumphed! On this last evening he made room for his father on the bed and said he wanted to show him a movie…

The film was extraordinary: The Diving Bell and the Butterfly. It is about a man in his 40’s who has locked-in syndrome: he can’t move any part of his body except one eye, yet his mind is whole and well inside. He wrote the book by blinking his eye to communicate. He dies in the end with his father standing by. I haven’t had the courage to read or watch it yet, but Martin said he couldn’t believe he was lying beside his dying son watching a father crying over his dying son… I’ll tell you now what Sam said the following morning, when Martin asked him why he had picked that movie?

“I wanted to show you a film about a man who defied death”


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On the ward

It was a gruelling night.  Sam needed nursing care – he was incontinent, unable to get out of bed alone, not fully ‘with us’. At some point he was wheeled off for his scan. At 2am Martin’s brother and father arrived: they had collected Becca at a train station en route She’d been having a ‘2 months together’ celebration with her boyfriend, Tom – which was why she’d wanted to go home. In need of support, she invited him to come along too. Brave man – he’d never met any of us before! But he was willing to come into this traumatic situation to support her, as he continued to do in the following months. We are eternally grateful.

In the early hours of Tuesday 18th November there was a moving family reunion in the dimly-lit corner of the 6-bedded ward as we all tried to keep our voices down around his bed: Sam and his fellow patients were asleep. Martin and I were exhausted and very glad the cavalry had arrived. We were able to take Martin’s dad back to our flat – only 10 minutes walk away – and all go to bed, while Richard, Becca and Tom took over at the bedside…

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Obviously there had also been some medical intervention since Sam’s admission – drugs for pain and sickness and also the first-line treatment for raised intra-cranial pressure, the steroid Dexamethazone. This drug reduces the inflammation and consequently the pressure and its symptoms and it undoubtedly helped cause the improvement that followed. By morning Sam was back to his almost-normal conscious self. We returned to the ward at around 7am and found Tom and Becca sleeping on chairs in the dayroom and sent them to our flat for a proper rest. Richard was by Sam’s bed and soon decided that as the crisis was past he and Dad would drive home. Later on, Becca put Tom on a train back to Brighton… and then there were 3.

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imagine the goose as the consultant – having a good telling off!

During the morning there was a ward round. A young consultant came to talk to Sam about what they had found and what they could offer. Oh boy – that poor doctor, having no knowledge of our son’s history and approach, got the full force of Samuel! “The CT scan shows the tumour has grown and there is mid-line shift (ie it was pushing into the left side of his brain). We could get an MRI with more detail and send you to the surgeons in Nottingham to see if they can do anything. We could give you some chemotherapy…?” “I have dealt with this in my own way up until now and nothing has changed. I don’t want you to do anything, I want to go home and continue to do it my way!”  With words to that effect Sam effectively dismissed the medics and took back control of what was happening to him – at least as much as he physically could.

The previous evening we had texted a number of our friends and Sam’s friends to let them know about him, so soon after that Dean, Sam’s energy-healer friend, came to visit. I’m sure this meant a lot to Sam – he was very reliant on Dean’s advice. We were also delighted when his old school-friend James came in. It was in fact the beginning of a number of reconnections with people who’d known him in recent years which was so important and helpful over the coming days. And of course his img_2783sister had long hoped for this opportunity to support her brother when he needed it…

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The day now stretched ahead and there was a lot to organise. Martin took over, making contact with the acute oncology team who could make the arrangements for Sam to be cared for at home – including night nurses, a hospital bed and other nursing care in due course. I drove back to Loughborough to get his house ready…
img_1203I worked hard cleaning and moving furniture around, putting the sofa in the kitchen so that there would be room for the hospital bed when it was delivered. I tried to position his personal things where he could get at them – music and a bedside table, chairs for visitors. I tried not to think that I was preparing a place for him to die in peace: we had no idea what that would entail or how long it would take…  But this is the status I posted at the end of the day – facebook found it for me this morning, 2 years on. Look at that, 140 comments… so much support from dear friends and barely known acquaintances. It meant so much. We knew we were surrounded by many prayers and felt the grace carrying us. Later on it was astonishing to be thanked for allowing others to walk the journey with us by being so open and sharing it as it unfolded. It continues to be a privilege and even helps to somehow give it all meaning. Thank you for reading now…

Meanwhile Martin sat with Sam. Martin still remembers with immense gratitude one of his consultant colleagues coming onto the ward to bring him coffee, mints and encouragement. He witnessed Sam try to walk to the toilet and fall. The hardest thing for him as a doctor was being unable to do anything to help, to make him better – because no-one could do anything. He recalls lying on the bed with him, crying over our son, his tears falling on Sam’s face – and Sam looking at him and saying, “Why are you crying Dad? You haven’t seen what I’ve seen…” We don’t really know what he meant or what he thought was going to happen: he continued to insist the tumour was irrelevant, but it seemed that at the same time he knew he was dying and was completely unafraid.

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He was moved into a side-room for his second night in hospital, which gave a bit more space and privacy. It also declared that he was no longer an emergency to be watched over – clearly the steroids and other drugs were having an effect. Becca took over the nightshift and laid out her own bed on the floor next to him and we returned to our nearby flat – so grateful for our Leicester home ‘for such a time as this’! – to rest and wait for what tomorrow would bring…


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Advance warning

2 years ago tonight I was staying with my father and step-mother in Totnes, whiling away a dark Friday evening, watching TV or reading, with no idea at all of the life-changing events about to unfold. It had been my Dad’s 86th birthday the day before – I’d gone down to see him for the occasion. Now I was looking forward to getting home because Becca was coming up from Brighton for the weekend to see the flat we’d been renting in Leicester – particularly so that she could understand why we had decided to buy the house from our landlady!  It was a rather crazy decision as it would be our 4th property…  But we knew it was too good an opportunity to miss.  It was only later on we discovered quite how good.

I also needed to get back to check on Sam, who had been a bit off-colour for a while with what he described as a ‘bug’. I’d called the doctor in to see him while I was away, but apparently she had said to rest – and think about getting another brain scan. He hadn’t had one for about 3 years: he didn’t want one. As far as he was concerned the tumour was old news, dealt with, history. No this was just ‘a bug’ – maybe somethng wrong with his drainage shunt which relieved the pressure of fluid in his head – and he was waiting to get better. Meanwhile I knew he wasn’t eating much – a great bone of contention between us! – and was most probably lying around on the sofa in his dressing gown, maybe on-line,watching films or playing games. His friends would visit bringing weed for them to smoke as well.

There was not much I could do about any of this as we had installed him in his own house and couldn’t often get past the threshold! He’d been given a terminal diagnosis nearly 5 years before and was convinced he had beaten all the odds: he had a will of steel and was utterly determined to shape his own destiny. So… parents are fairly redundant in most 27 year old young men’s lives! I had gone to Devon and Martin had also gone away – to Nice for a work meeting. We had been getting on with our lives as much as possible and we assumed our son was OK because that’s what he wanted us to think. He was in charge. If he needed anything he could ring or call in the lodgers from our house round the corner.

image-1I had however, bought him a large fluffy toucan puppet from Totnes market to wear on his arm! He may have been 27 but he’d had a love affair with squeaky glove puppets since he was very little…This one made an appropriate rude noise when you pressed it and Iimg_2794 couldn’t resist buying it for the lad – both for old times sake and also because his father has a tattoo of a toucan on his derriere 😉 Little did I know that it would accompany Sam into and out of hospital and be on his bed at home when he died less than 2 weeks later.

So – no advance warning then, as I sat cocooned in the cosy lounge in Devon. Or maybe we’d already had the warning years before but it’s siren had dulled with time and all the camouflaging techniques Sam employed. The truth was we’d lived with anxiety for so long we were like elastic that has lost it’s stretch, so we coped the best we could and dulled it as necessary. Even his little ‘illness’ hadn’t really rung any alarm bells… he’d had episodes like this before. So no, there was no advance warning of what was about to start in 12 hours time.

Now I am giving you advance warning. 2 years on I am going to revisit those 10-11 days and write about what happened. I have told much of Sam’s story over the years, but even in the post I wrote about his death and burial one month later I didn’t go into detail in the way I intend to now.

Why? Why now? Well – I think I need to… I think it will help me go deeper in my grieving than I have been able to go this far. Painful it may be, but I must make room for the buried pain to come out if my heart is ever to be healed. Perhaps this therapy can help me and even some others.

Also as a tribute to Sam. We have never been able to face putting together a celebration of his life – not yet anyway. We had a small informal gathering for some friends and family when he was buried and promised more later – but it has not happened: I can’t face it. Perhaps I can use this time, now the initial 2 year phase of acute grief has been experienced, to pay my respects to a brave man, to remember his humour, his strength and the loving things he said in his last days.

Anyway, that’s the plan – a post every day remembering our roller-coaster journey of 2 years ago. Buckle up!