Category: Death and Dying

The Hierarchy of Hell.

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I think we’re all still reeling from the horrific murder of Jo Cox. I know I haven’t stopped thinking about her and her family all week. Regardless of the political or mental health reason, or both, that led to her death, that woman went to work the other day and didn’t come home. Her life was snatched from her in the most brutal of ways, leaving her young family broken.

When I’ve heard of other people who’ve recently died, I’ve tried to assess it in my own mind. I’ll weigh it up and wonder if their family will be grieving more than we are, and even silently ask myself if they have the right to. There’s a part of me that gets a bit pissed off with people banging on about their father-in-law who was a bit of a miserable old bastard anyway, and who sadly passed “unexpectedly.” Unexfuckingspectedly? Oh, do me a favour. He was 87 and smoked and drank all his life, I chunner to myself. Get a grip. My kids’ daddy is dead, I think. They’re ten, you’re 56. Get over it, I think.

But, I know these are the irrational thoughts of a grieving woman who’s trying to make sense of her newfound place in the world, even though she doesn’t yet know where that place is. Of course people are entitled to their grief, but actually, yes – there is a hierarchy. There has to be. Sometimes it can be quantified.

When my husband died, we knew it was coming. It was bloody awful, but he did at least know that he could choose where he died, and who he spent his last days with. He saw the people he wanted to see, and wrote some loving letters to the people he didn’t have the strength to face in person. He said what he needed to say, and heard what he needed to hear. Nothing was left unfinished, and we all knew how much we loved each other. He was grateful to have had a comfortable but too-short existence, and appreciated that his end would come in a warm bed, and not on a battlefield or in a refugee camp. He got seriously pissed off with the rolling news coverage when David Bowie died because – although he’d been a lifelong fan – he didn’t see the death of a sixty-something successful bloke as a “tragedy,” any more than he saw his own demise as one. There was far worse shit going on around the world, he said. It’s bad, we don’t want this to be happening, but it could always be worse.

So, when Jo Cox was gunned down and stabbed the other day, for reasons we don’t yet quite know, of course it was a tragedy. Here was a mother – a mother (and we always consoled ourselves with the idea that a child losing a mother is the ultimate tragedy, after a parent losing a child,) whose children would grow up without her. Suddenly. Unexpectedly. Tragically.

When I was 18, one of my best friends was stabbed to death by another friend – his brother-in-law. It happened after a night out, shortly after they’d dropped me home in a taxi and gone back to theirs. The shock of finding out it had happened, and then seeing my darling friend lying lifeless in intensive care – his nose the only identifiable part of his body beneath the tubes – has never left me. I remember screaming. Screaming all the time, for weeks. I would have given anything to have brought him back, to comfort his family, to make everything OK again. It was horrific. I didn’t sleep for months, and I doubt his family did either. I remember those long, desperate nights, unable to breathe because of the sheer shock, and how every year the anniversary of his death threw me into a deep emotional black hole which would take days to climb out of. I ran away to the sun, I came back home, I clung on desperately to an unhappy and controlling relationship, and life was grim for a very long time. Although I have since sought help (with some serious support over the years from my husband,) am generally contented, and now use his anniversary as a day to do something positive – a day I now almost look forward to – not a day goes by when I don’t think about my friend, and remember him. And wish.

Multiply ad infinitum those feelings of shock and desperation, and that’s maybe where Jo Cox’s family are, and the families of anyone whose life is snatched away from them because of someone else’s sheer evil, madness or recklessness. I simply can’t imagine how much more grief it’s possible to bear than that which I endured as a teenager, but my God, it must be so much more painful for them. I only had a friend. Jo Cox’s husband had a wife. Their children had a mother. How much worse can it be than that?

To feel desperately sad that my husband died from cancer is quite understandable. The grief is ever-present, but it’s nothing that can be compared in any way to the shock which follows a murder. Our boys are struggling emotionally, but they had two years to get used to the fact that their daddy might leave them, and to somehow prepare themselves, not that you ever really can. They held his hand as he left us, and promised him they’d be good boys. Jo’s sons probably went to school on Thursday, and before the bell had even sounded for morning break, their mother would have already given them her very last kiss, cuddle and ruffle of the hair.

Is there a hierarchy of hell? Yes. And the Cox family is pretty damned close to the bottom right now, in a place where nobody ever deserves to be. Whatever path our little family’s journey of grief takes us on, Jo Cox’s murder reminds me that we must always be grateful for the chance to have said goodbye, and that one of us simply slipped away quietly, surrounded by love, and at peace.

Love Fanny x

Letter

Part of my husband’s final letter to me – which he wrote about a week before he died. His mind was starting to tire, and he wasn’t sure what to say. I told him he didn’t need to write at all, because he’d said everything already. But, he’d already written to his children, and was determined to do the same for me. I’m so glad he did. Not everyone has this luxury.

I Wanna Hold Your Hand.

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We went to a party on Saturday night. It’s not the first time we’ve been out, the boys and I (or indeed I on my own,) since D-Day, and although I mainly want to stay at home curled up in a ball, I know it’s A Good Thing to go out and I need to make the effort. We need to socialise, and I’m determined that my hubby doesn’t just slip into obscurity, and become some legendary bloke who we all vaguely remember. No. He has a name, and we use it often. Still, I’m pretty selective about who I feel up to partying with, as the fixed social smile often gets wiped away by tears. For the most part, the small talk I used to be so good at makes me feel a bit nauseous, and I don’t want people to ask how I am because they won’t like the answer. For now, I’ve pushed away from the rest of the world and only brought my closest allies along with me for the ride. No. His closest allies. His dearest friends. They’re all I want.

Over a glass of wine and a few nibbles (we always wondered why crisps tipped into a bowl suddenly become nibbles, just because they’re in a fucking bowl,) somebody remarked to me that at least my hubby wasn’t in pain any more. What a cliché. I get it. I’ve known for the last eight weeks that clichés exist for good reason, because they’re often painfully true, but really? That comment tipped me right over the edge. Let me tell you something about my husband.

He was brilliant. For the last five months of his life, he was in constant pain. Truly awful. His liver tumours were growing and he struggled for breath as his lungs kept on filling with fluid. But, his attitude (and a hefty supply of morphine and dexamethasone) meant that that didn’t stop him. He carried on working until he could barely work any more, was riding rollercoasters with me, our boys, and a bunch of chums at Blackpool Pleasure Beach one month and a day before he died, and even squeezed in a week’s holiday in the sunshine. We returned home three weeks before he passed away. But dying was never on the agenda.

He didn’t want to die. He had no intention of leaving us. He fought tooth and nail to stay. Was he in pain? Yes. Did he mind? Yes. Could he have gone on for longer? You bet. He had not given up. Pain was just an inconvenience that he had to put up with in order to stay with his adored boys, but giving up or dying were not on the list.

I sat with him for almost every moment in those last days. Those long, surreal, dark days. He needed me to administer his meds and help him to the loo. We talked about inconsequential things, and important things, and his mind began to shut down. In the early hours of the morning, he wanted to know where Prestons of Potto were based, and then proceeded to piss on the hall floor. He then shuffled back to bed with his oxygen tube in one hand and my hand in the other, but decided to adopt a Scottish accent for the journey back. He began not to remember that he was dying. It was probably a blessing, because he had been too stubborn to let go, and would not have ever given up of his own accord. Ever.

That hand-holding, though. Those beautiful hands that had been so animated; they were the first thing I fell in love with nearly fifteen years ago. Those hands that became, like him, emaciated and uncomfortable to hold on to, and not the fleshy, slightly wrinkled (but his) hands I’d always held. But they were there, and there was a pulse. He was still inside those hands, somewhere. He could squeeze mine, or I could kiss his. Or kiss his face, or his stubbly chemo-ravaged head. When there was still a pulse, he wasn’t there – he was gone in all but heartbeat and breath – but I could hold his hand. He was still him, and he was ours to love.

When he was gone completely, a waxwork took his place. One moment, we could hold his hand and love him – HIM, the man, the person, the daddy – and the next, we were touching something with as much life and texture as a piece of plasticine, or a doll. But at the same time, that doll was so familiar, wearing my husband’s favourite t-shirt, wedding ring in place, and his wristwatch still ticking, even though everything in our collective world had stopped.

Those hands, like the rest of him, are dust. His wedding ring lives on my finger now, but there is no longer a hand to hold. Would he have carried on, despite the pain, until now? Of course, and beyond. And if he could have done, we’d still have that hand to hold, and to hold us in return.

Is it a comfort to me that he’s not in pain any more? No, because the pain, for him, and for the rest of us, was better than his not being here at all.

Love Fanny xHold Your Hand

Let’s Talk About Death, Baby.

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A couple of days after my husband was sent home to die by the “world leading cancer hospital” that was treating him, this text arrived.

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It has to be the final insult from a hospital who gave us false hope when there wasn’t any, kept dragging us in for pointless appointments which often ran over two hours late, hadn’t contacted our GP with an update since February, and kicked my hubby out in an ambulance with nothing but his pyjamas and a bottle of oxygen at 7.30pm on a Friday night after failing to spot a significant mass of tumour and telling us there was therefore nothing more they could do.

Without a fantastic selection of local friends – some of whom are our GPs and were brilliant at sourcing help from the district nursing team (and one even went the extra mile and took a night shift on the sofa so I could get some sleep in bed) – we would have been left completely high and dry. No contact from Macmillan, Marie Curie, or our local hospice, despite several referrals, not to mention several thousand pounds’ worth of fundraising done by our family over the last two years. Not even a leaflet to tell you what you might expect from dying (which – we have learned the hard way – is a process, not an event, and I promise you, nothing like it is in the movies.) God knows what people do when they’re completely on their own, because we were well supported by friends and family, and any medical questions were comprehensively and willingly answered, but the hospital didn’t know that, and you don’t know what to expect anyway until it’s 3am and you’re completely alone and helping the man you love to cough up tumours, or get to the toilet when he can’t support his own body weight, or calling an ambulance because he’s fallen out of the hospital bed which was supplied without cot sides or even sheets – two days after his discharge because they don’t work weekends. He actually slept in the kitchen for two nights until it finally arrived because he couldn’t get up the stairs. His one wish was to die comfortably at home, and the romantic and quiet vision we had in our heads was nowhere near the reality of what happened. We never knew he might lose all his cognitive functions. He never EVER wanted me to wipe his bottom for him, but I did that too (willingly, of course, as the “sickness and health” part of our marriage vows were taken seriously,) and after finding him lying on the floor without underpants, his catheter spilling out all over the carpet, had to have him hoisted back into bed by two strong neighbours which was distressing for everyone – except my husband, who by then, thank God, was blissfully unaware.

When you have a baby, part of the fun of looking around the delivery suite is being told that you might shit yourself during the process of birth, that it’s completely normal, and that a midwife would just come along and wipe it up. It sounds ghastly, but it happens to almost everyone, apparently. In death, it’s much the same. But did we know that a major bowel evacuation often happened shortly before the body shuts down completely? No, we did not. It wasn’t a sign we knew to look for, and I remember wiping it all away through the tears and feeling so angry on my darling husband’s behalf, because it was all so fucking undignified.

When they tell you to go and “enjoy the last two weeks,” they don’t tell you that you might only have a couple of days before his brain starts to shut down, and that the most quick-witted man you’ve ever had the pleasure of knowing won’t even know who he is any more, or that the man with the sexiest voice in the world would lose almost all power of speech. They don’t tell you that he won’t be able to understand simple medicine regimes or that you’ll have to give him his favourite drink (tea – milk, one sugar) from the toddler’s sippy cup you’ve had to borrow from a neighbour. They don’t tell you that the district nursing team are so tightly bound in red tape that they can “only treat what they see” when they get there, regardless of whether it’s taken them an hour to get to you after you call them in a panic because your husband can’t breathe (by which time you’ve just about got him settled again.) They won’t administer any drugs which might alleviate the symptoms if HE says he doesn’t need them, even if they’ve been prescribed by his best friend, and he won’t take anything orally because he doesn’t know what it’s all for any more, and thinks the nurses are all trying to kill him. He also said he was left handed (he wasn’t) and talked a lot to the people “over there” who didn’t even exist, yet the nurses couldn’t accept the word from two of the people who loved him the most – his wife, and his best friend, the doctor.

They don’t tell you that by law you have to have his DNR in the house and keep it safe – to be produced at will like it’s just some bank statement or other, or that you have to casually pop down to the chemist in your lunch hour to pick up the controlled drugs which will eventually finish him off, peacefully at least, and chuck them in the boot with the rest of the emergency chicken nuggets and milk you’ve had to grab from Morrisons so the kids don’t starve.

I have no regrets about my husband coming home to die – it was his wish, and I was happy to help him to be as comfortable as possible. If I couldn’t do that for him after everything he’d done for us, it would have been a pretty poor show. In some ways, it was lovely to be able to hold his hand any time, or to see the boys playing next to his bed in the sitting room like it was all completely normal. I just wish someone at the hospital might have talked things through with us so we knew what to expect, before they kicked him out. He didn’t know what was expected of him, and as his mind began to fade, he kept asking when he was supposed to die – reducing his little boys, and grown men friends, to tears.

I also wish they hadn’t strung him along with outlandish life expectancy predictions in the way they did, because the most heartbreaking part of all for us all was that he was not at peace with dying at all, was not ready, and resisted it all the way, but there was nothing anyone could do to stop it happening. They could and should have said to him months ago that there was no hope at all, at which point he could have begun to prepare to go gently and peacefully.

The outcome would have been the same either way, but if my husband had been discharged following a proper conversation about death, dying, and each of our roles within it, we’d have been far better prepared for the inevitable. It’s time to talk openly about death.

Until then, we chose option 7 – total fucking shambles.

Love Fanny x