Death is one of our culture's taboos so I hope this blog does not offend. We're not very good at death - you'd think there would be a useful protocols by now - we've been at it for thousands of years! Because death's not really spoken about nobody appears to know what might help in such testing times - certainly not if my closest experience with it is anything to go by......
My dad was an unusual character - extremely unorthodox and very angry. We never got to the bottom of whatever made him like he was because the tiniest hint of digging below the surface always provoked an angry outburst. He could go from nought to full rage in less than a second and my siblings and I got very good at treading on eggshells as children. He was incredibly academically clever and capable: good at constructing things (made me a beautiful wooden magic roundabout), a practical scientist - could build radios and all sorts of gadgets, creative - pretty good at painting, a linguist (spoke Spanish, translated French documents for air traffic controllers, and learnt Korean in his later years) and could apply himself to just about any problem solving. He also did 'fun' in a great 'outside the box' way and I certainly connected with him through a form of silliness I have only ever really found within my family. Unfortunately however, probably typically for his generation, he was emotionally illiterate.
Sadly, after a very close relationship with him in early adulthood, after my sister and I had kids, somehow the relationship deteriorated and my siblings (including my younger brother) and I rarely saw him or had much contact with him after about the year 2000. It just went wrong and I think my dad's sensitivity could no longer cope with the raucous, fun loving, irreverent kids he had brought up! I saw him very occasionally and spoke with him on the phone but it just wasn't the same. I felt sad about this, but it was also, if I am honest, much easier not to have the anger threat in my life.
It was March 2008 when my mum phoned to say she had seen my dad (they had divorced in 1987 and never spoke) sitting on a chair in the lobby of a local supermarket. He did not usually go to that supermarket - being a bit out of his way, so he might have been waiting for her for all we know. She said, 'he looked close to death.' She was clearly genuinely shocked by his appearance.
I had last spoken to my dad a few months previously and he had congratulated me for suggesting that his stomach pains might be a gluten intolerance - for having cut out all wheat, he did feel better. He was quite upbeat at that point and I felt a little reassured. Prior to that he got instantly angry at any suggestion of going to the doctor. I phoned his doctor to inform them that he almost definitely needed medical attention but that he was refusing it. Could they cautiously, 'within their parameters of confidentiality' do anything? No apparently not.
I worried for all of April. He got angry if I rang and responded in a very measured way to e mails - but not all of them. I went to visit my mum and arranged to meet him but he ducked out last minute stating he would not answer the door. My mother eventually visited him and said to me,
'leave him alone, he knows what he is doing. He wants to let this illness run its course and he's scared of being put into a care home or hospital of some kind.' It was at this point that I re-remembered that you could not always apply 'normal' reasoning to my father's behaviour.
May 4th, my mum rang to say he could not bear the pain any longer and had asked her to phone an ambulance. I felt relieved. The idea of him at home, trying to die alone was gut wrenching. He had said we could come and visit him, now he was in hospital. I went first thing the next day.
I drove like a maniac (my dad - the most cautious man in the world would not have approved) to arrive in time for Bournemouth Hospital visiting hours. My mother prepared me to be shocked by his appearance. I walked in to see a skeletal man with yellow skin, too frail to speak properly and a face so skinny it was almost unrecognisable but I smiled through my reaction and tried to give him a kiss. He brushed me away, saying 'too much.' I was glad my mum was there because my dad was speaking to her as if they were still together (a kind of jarring banter!!!). My mum flapped and fussed about a missing bag she had lent him to bring his stuff into hospital and nothing much happened or was said. He did smile a few times and made some jokes, but he was hard to understand because his voice was so weak. I just stared at him when he wasn't looking - in disbelief. How could he have let himself get this way? He did seem comfortable however, as they had given him morphine for his extreme pain. He gave me a list of things he wanted brought from home - which now gives me a poignant painful pang, as the next day I brought him his Spanish magazines, brought him a toothbrush and paste, a notebook, some clean pyjamas, some mouthwash and gave him £10 to buy a newspaper etc - for all it was worth. He never used any of them.
I could describe all the details of the days that followed and they would make very sad and sometimes horrific reading. Instead I will just say that he soon became completely deluded through the morphine (and the active dying process?), fell out of bed because he thought the snoring man opposite was a tiger, ceased to make any sense, kept pulling out the cannula that was keeping him hydrated and showed signs of extreme distress and paranoia. I am guessing an angry lifetime plus morphine does not make for a calm death.
The last night I visited (7th), he was throwing anything that could be thrown, spitting brown blood everywhere and trying to clamber out of bed. As I left, I said, 'I love you dad.' To which he responded, 'Love? love? fuck off,' and then continued to rant incoherently. They were sedating him - again and again. He took ages to respond apparently.
The next morning, we were called to the hospital early because my sister and I had finally got an appointment to speak to the consultant (the organ grinder - as the monkeys hadn't so far been very helpful). As we walked into the hospital, the fire alarm was sounding. Remembering my father's state when I had seen him the night before, I suspected the alarm would be causing him considerable distress. We were told to wait but I felt the need to go and be with him. My sister stayed where she was but I walked into the ward to find my dad - heavily sedated to the point of complete stillness - staring towards the sound of the alarm. I sat next to him and said,
'Ah dad you look so much more peaceful. The fire alarm is somewhat piercing -it's a false alarm. I hope you are as peaceful inside as you look on the outside.' He then gurgled up a lot of brown blood without moving. I left to get a nurse and returned to see them turn my father on his side. I was asked to leave.
My sister and I sat in the relatives' room not sure what to do with ourselves. We had witnessed our father in a terrible state over the last few days and we definitely wanted his suffering to end. I remember Claire (my sister) saying,
'I'm not religious but I am going to pray that he dies.' to which I added, 'I am not religious but I am going to ask the cosmic nun that I have been told is looking after me, to let him die.' We did laugh. I find humour usually provides the catharsis needed in such situations but it didn't quite cut it this time.
The consultant soon came and let us know that he had 'passed away.' I remember the euphemism annoying me and I said, 'do you mean he's dead?'
Our unorthodox prayers had been answered. And we both obviously felt a huge sense of release.
At the time, my usual reasoning was pretty non-existent and I was very much living in the present moment feeling a lot of distress. My dad's death was awful - in a nutshell. There was certainly nothing dignified about it. I now look back and realise that hospitals are just not in the business of 'dying'. They receive people to nurse them back to health - or at least that is always the understandable aim - and they seem to exist in denial of the possibility of death. Unless a person has cancer, the palliative care for dying seems unconsidered.
I appreciate my father had come to them after an absence of any medical attention, but our clear statement that he had come to hospital to die pain free - not be nursed back to health (which - as the consultant said - he was most definitely beyond) went unheard. The day before he died, they were still talking about investigative procedures and were holding off the attentive palliative care that we were pushing for - because they had to until they knew the underlying cause of his condition. The nursing he was receiving was not great either - he was understandably seen as a nuisance - because of his constant shouting out and difficult behaviour - rather than a man in the last days of his life.
In the end he probably actually died of de-hydration but the autopsy told us he had biliary peritonitis - something that more than likely could have been cured, had he sought medical attention when he first felt ill. So really he died of emotional illiteracy - inability to manage fear in particular.