My dad didn’t go into hospital to die, but he was dying. I just wasn’t prepared to admit it. He’d been dying slowly for 20 years, but the last 6 months of his life he was slipping away and I didn’t see it.
My dad was 6ft 6. People called him the gentle giant and he was. His heart was the biggest thing about him, how much he really cared for people and for animals. He wasn’t overly sociable, but when he let people into his life he really cared for them.
He was full of laughter, he was full of light and he was full of love. Every time it snowed, he would take me to the nearest hill and we’d go sledging, he even made me my own sledge. We had goofy names for each other, he was bootface to me. We woud make fools of one another in the supermarket. He was my dad, he was my friend, he was my confident.
While we talked almost every week, and we had open views about many things, including euthanasia, or dignity in death. He couldn’t understand how he could take a very much loved dog to the vet and have it put to sleep when its suffering got too much, but he didn’t have that choice. He wanted that choice and felt it wrong that he didn’t.
DVT was a 20 year death sentence
The decline in my dad’s health started twenty years ago, when he was diagnosed with deep vein thrombosis (DVT) in his right leg. He was about 50 when it happened, and he’d been a coach driver for a number of years. We never spoke about it, until his last 6 months, but he’d also had a pulmonary embolism and almost died then. I was 16 and my mother wouldn’t let me visit him in hospital. He was there, then he wasn’t, then he was home and never went back to work.
In the years that followed, I left home and moved away, unable to stay around a mother who was pure evil. My parents separated not long after and I found that my mother was physically abusing my dad. She was a violent alcoholic who did her best to destroy lives as a hobby. After finding out what she’d done, I encouraged him to divorce her.
Life as a single man in his mid-50s my dad found himself living in council run sheltered housing, in a flat that should have been condemned. Regardless of how horrible his home was for him, he built up a life with the community that lived around him. He always felt he was too young to be in what was a retirement community, perhaps he was right.
All of those things changed in 2011, when the local authority sold all the flats and the land they were on to a social housing developer. All the residents were to be scattered across the town to whatever suitable home became available. It took some time to find my dad a flat, but when they did he was turfed from his home.
You read stories about how elderly people being forced to move is a death sentence. Until it happens to your loved one you really don’t appreciate how true that is. I thought the new flat would be good for him, it was bigger, brighter and warmer. He just didn’t tell me how much that little community meant to him until after he had moved.
It took less than a year for that move to start killing him. In his isolation and loneliness my dad started drinking more heavily than he had previously. He always liked a drink, but knowing the damage my mother had caused he was always kept a step or two away from alcoholism.
After he moved, I made the trip to see him once a month, until I was diagnosed with an illness that led to surgery and meant I couldn’t drive for a number of months. I didn’t see my dad for about 8 months and when I did I thought he had cancer. He was so thin.
The beginning of the end
The day before my dad turned 71, he told me he’d been to see his GP who had taken one look at him and told him he was being admitted to hospital. I could hear the sadness in my dad’s voice when he phoned me to tell me. My dad had a love / hate relationship with hospital, he didn’t want to be there, yet at the same time he loved being doted on by the nurses. Perhaps looking back he knew he was sick and just wanted to be left alone to die as he wished.
I’d already planned on going to see my dad on his birthday. I’d had a birthday cake made for him, it was a crossword puzzle because he loved to do them every day. When I arrived at the hospital I found he’d been moved to the high dependency unit. At the time I really didn’t give too much thought to how sick he might be. With all the urgency of being moved, the doctors couldn’t tell me much about his condition or what had landed him there in the first place. A problem with his stomach they said, different to what had happened before.
The time he was admitted to I was half way through working my notice period at work. I was sort of heady with the redolence that the prospect of a new job. One that I really thought I deserved. I was sort of lost in my own world for a bit, hopeful that things were going right for me for a change. I realise the selfishness of it was stupid. Now, I try not to feel the guilt, I should have had my eyes more firmly on my dad, and that he was dying. Only I didn’t realise he was dying. There had been so many false alarms and this time it would be no different. I was wrong.
This was the first of four admissions up until his death, in a five month period. The first, he was in for about five weeks. The doctors wouldn’t tell me anything when I phoned, I knew my dad wasn’t telling me things. I didn’t know if it was the doctors not telling him or him protecting me, but I couldn’t get any information out of people so it made it incredibly hard to find out anything.
The doctors wouldn’t tell me anything because two Australian DJs had fooled the nurse looking after a princess. They actually told me that. I yelled, I begged, I pleaded but nobody would tell me anything, ‘you need to come and see him in person, then we’ll tell you’. On a daily basis I found myself explaining where I lived (90 minutes away), and that I was working my notice period, I couldn’t get time off and the doctors weren’t there at weekends to talk to. On a daily basis I heard their judgement in their voice.
In the end it took a letter of complaint to the Chief Executive to get someone to talk to me. His leading consultant phoned me on an almost daily basis after that. It took two weeks to get someone to talk to me. At the same time I wasn’t getting a very clear picture.
The most I could understand was that there was a blockage in his stomach and food was unable to get to his bowel. He was starving to death. They couldn’t get a nasogastric tube down so they were giving him nutrition through an intravenous drip. Something that was making my dad feel very unwell.
I spoke to my dad as much as I could while he was in hospital. I remember a Friday night not long before he was discharged phoning me in tears telling me that the doctors had told him that unless he started to stabilise they said he was going to die. That night there was a huge electrical storm, I sat and watched the lightening, crying, because my dad had taught me not to be afraid of the thunder and lightening, that it was just ‘angels playing skittles’, it seemed poetic in some kind of strange way.
I went to see my dad on the Sunday, I found him in a truly awful state. Hardly clothed sitting in a brand new hospital room with no TV and nothing to keep him entertained. He was incoherent and falling apart. It was all I could do not to cry in front of him. I had to leave the room.
Speaking to the nurse on duty, I complained about the state my dad was in, he’d wet himself and had been sitting in it for I don’t know how long, because as he put it ‘I’m tethered to the bed, I can’t get up’. I explained as best I could to the nurse that I was in the middle of changing jobs, so getting down to see my dad over 90 minutes away wasn’t something I could do on a daily or even weekly basis. I couldn’t afford it. The nurse said ‘why haven’t they offered to put a password on his medical files so they can verify it’s you?’ Why indeed.
After talking to the duty doctor and being told that they thought my dad had pancreatitis, they were stabilising him, then they would operate to put gastric bypass in place so they could get nutrients into his stomach.
A week later, without explanation my dad called to say he was at home. I still don’t know why they didn’t do the surgery. The practice nurse who had cared for him for almost as long as he’d been ill got him on the vulnerable adults register, but the hospital still discharged him (we knew he would be readmitted).
He was home two and a half days, then he was readmitted for two weeks.
He was sent home again. This time he seemed to be slightly better, he lasted through to most of July & August. In the early hours of a Saturday in mid-August he collapsed at home, he pulled the emergency chord in his warden controlled flat and ended up back in hospital. He was vomiting blood.
I raced to see him, a feat of impossibility on a Saturday in August on the M5. I managed to spend 90 minutes with him before I had to turn around and come home. He was white. He could barely speak. He was vomiting blood and all the time he was apologising to me, he didn’t want me to see him in that state. He was ashamed I think. He knew, that I knew he was drinking and it was causing his slow death.
I though this time would be the last however. The young doctor who was caring for him was happy to talk to me (having spotted the earlier instigated password), called me constantly to let me know what was happening. They finally seemed to get the pancreatitis under control.
He came home at the end of August and I went to see him. He’d put on some weight. He had a bit of a sparkle back in his eyes. I brought him food and a new laptop so he could communicate with people. I made him lunch and spent a few hours with him just talking about things like we used to. He seemed happier.
It didn’t last.
The final days
Early in October he went to see his consultant at the hospital who said he was to be admitted again, he couldn’t stand on his own two feet.
For various reasons I couldn’t get to see him for the first two weekends he was admitted. He’d also told me long ago I wasn’t allowed to give up my life and keep dropping everything to see him. We made a plan, I had a weeks holiday booked, the first week of November. I was going to come down on the Wednesday and we would talk to his consultant together to work out what they would do.
I spoke to him on the Saturday before he died, I’d been out for a business meal on the Thursday night so couldn’t talk to him then too tired on the Friday. He’d said they couldn’t get the nasogastric tube down so they were going to try IV nutrition again. He was starving, he told me he was absolutely starving but wasn’t allowed to eat anything.
I tried to speak to him on the Tuesday, but when I finally got through to him, he told me he was at home. Then he wasn’t at home. I accused him of drinking. He said he was tired. He was slurring his words. He made no sense. I was going to try to talk to him again on the Wednesday evening.
After talking to a friend on the phone on Wednesday, I had a shower. Checking my phone I had a voicemail from the hospital asking me to call them.
They don’t actually tell you that your loved one is dying. They don’t say the words, ‘your dad is dying’. They say ‘you need to come’ and ‘you really need to make some time to come’. The urgency to get there wasn’t conveyed. So I had a stupid conversation, because I’d been there twice already in the last six months. Was he really that sick? it was two days before payday and I had just enough money to get me to work for the next two days, but not to get to Somerset and back.
Having had the urgency pressed on me I left frantic message for my best friend who lived near my dad, surreal as it seems, I think I said ‘the hospital seem to be implying that my dad is dying’. Funny what you say in times like these. Another friend lent me some money. I did stupid things like drying my hair and sorting food out for my cats, to calm myself down before driving 70 miles.
I surprised myself at the calmness of how I got down there. Stuck to the speed limit. No crazy moves. I got there in exactly 90 minutes.
My best friend, Jo, met me at the car park and we walked through the deserted corridors of the hospital. We joked a little bit as we walked through. Jo just knows how to calm me, like a sister she subtly does things to change the tempo.
Walking onto the ward the nurse stepped out from behind their counter and walked towards me. I was greeted with the words, ‘I’m sorry, he’s dying’.
Death is not romantic like it is in the movies. It’s brutal. There is no softly lit side room with chairs for grieving relatives. He was on the ward, with a curtain pulled around him. Remnants of his unfinished life scattered around him.
He was gasping, like a fish, a fish out of water. His head thrown back his mouth flapping open his chest heaving to grab at every last drop of air he could get. Not wanting each breath to be the last. I sat and cried. Jo and I held his hand.
At some time in the past I had read an article where someone had said that whilst their loved one was dying, they held their hand and told them that it was OK for them to go. So I did that, I held my dad’s hand and I said…
“Dad, you don’t have to hold on any more. If you want to go, you can I will be OK. Dad, ‘death is but the next great adventure’ and I think it’s time you had yours, you can let go and have that adventure”.
Seems equally silly and sad that I would quote Dumbledore to my dying dad, but whoever that person was, who said they felt they should tell their loved one that it was OK to die, thank you.
I stepped away from my dad to talk to the doctor briefly, only to be called back almost immediately. I don’t think my dad wanted me to be there when he actually died. I was though, I might not have been there all the time he was ill, but I wasn’t going to let him die without me.
He probably had two more breaths when I returned. I sat there with him for about another fifteen minutes before I let it sink in that he had really gone.
What I know now, my dad had atrial fibrillation, something I wasn’t aware of. His body so completely malnourished was unable to cope with IV nutrition as his only method of food and his heart had been gradually weakening in the few days before he died. At about 8pm on Wednesday 29th of October he suffered a cardiac arrest. They resuscitated him, but he never regained consciousness. They told him I was coming and he held out until 10:40pm when he died. In the end, his heart was too big for him, something anyone who knew him would smile and nod in agreement.
Death is not pretty. I know the Dignity in Dying movement is currently advocating for end of life dignity for those with terminal illness. I also know the law is different in Holland. In Holland, I think I understand that if someone feels that they no longer have quality of life, that their life is compromised by illness, then they can also seek to die with dignity. Had this been an option for my dad, I don’t think he would have drank himself to death. I don’t think he would have put himself through months of pain. I think he would have said the loneliness was too much now, and that he wanted to go. As sad as it would have been, I would have let him go. He would have drifted away, fallen asleep and never woken up, like his mum. It’s how he wanted to die, and I’m sorry he didn’t get that choice.