Please be aware, this story follows a terminal diagnosis
When Ben’s father was admitted to hospital with alcohol related liver disease, the family fought to ensure he received the best care possible in a ‘critically ‘underfunded’ NHS. However, when the doctors said there was nothing more they could do, the family did everything they could to ensure their beloved dad’s final days were as comfortable as possible. Thank you for sharing your story, Ben
My dad first started drinking at weekends when he was younger. He later became a functioning alcoholic for the last 30 years of his life following the death of his dad and best friend in quick succession, meaning drinking went from social to numbing. He and my mum separated when I was 12, but they lived only two minutes away from each other and he was always a great father.
It was only when my brother and I got older that we realised the quantities Dad was drinking and would sporadically raise the issue with him. He recognised it, but didn’t do anything about it and tried to hide it. Dad’s physical health began deteriorating rapidly in 2021 when he was 63 – his balance became a lot worse, there was muscle wastage and the smell of his breath became foul. Because he was a stubborn Northern bloke he’d never admit to being ill, so when he eventually said he felt awful we immediately took him to A&E. Dad was in and out of hospital for the next six months.
While the individual staff were brilliant, the NHS is clearly critically underfunded. Everyone knows it, but until it happens to you or someone close to you, you don’t realise just how bad it is. Dad stopped drinking and did everything the medical staff asked of him, but during his first admission he said to staff that he only drank two bottles of wine a week because he was embarrassed and wanted to go home. It was hard to get hold of medical professionals who knew about my dad to correct that information and even when I did, I wasn’t sure how much it was taken on board.
No liver ward
Dad’s first discharge letter was just two sentences long and he was given two types of tablets. We were appalled that no one checked if he had family or carers and if we hadn’t demanded that someone take him on again, he would have died within weeks. He should have been referred to the appropriate (liver) team immediately, like you would be if you had a heart problem. When that eventually happened they were great, but they needed more help. There was no liver ward, only a tiny office down the corridor for staff which was not always occupied. Both mum and I worked at the hospital so we could knock on people’s doors, but I don’t know how someone would cope if they didn’t know where to go or who to ask, or if they didn’t know how to use the internet. They’d be completely lost.
Now Dad wasn’t drinking, my mum noticed he was getting his old personality back and becoming more jovial even though he was very poorly. However, he was becoming very forgetful and the liver specialist diagnosed him with hepatic encephalopathy almost immediately. Dad was very ill at this point, but we were staying positive and continuing to do whatever we were asked as it was all we could do. However, by January 2022 Dad’s doctor said he was too ill for a transplant and the chances of him surviving were basically zero. Nothing can prepare you for a conversation like that. Everything became a blur and it was now all about doing what we could to extend his life for as long as possible, and enjoying whatever time we had left.
I stopped working, and my mum, brother and I took it in turns to care for him. Because I’d worked in healthcare since I’d left school and my mum had 30 years’ experience as an NHS occupational therapist, we were used to looking after people. However, Dad hated having his closest family do literally everything for him, especially when the itching and HE got really bad and he constantly needed the toilet. We were happy to help him, but the pain on his face from having to ask was hard.
We tried to fill Dad’s last few months with as much fun stuff as possible, such as finding any TV he cared about, but once the hepatic encephalopathy set in, he was bored of almost everything because he felt so crap.
Food became a real challenge. Dad hadn’t like the hospital’s hot food, so they would just Leave sandwiches for him, but he never ate sandwiches before and was not about to start now. By the time we got him home and did our research on what we should be feeding him and aligned that with what he actually wanted to eat, he was weak and bedbound. I found that conversations about what he used to like eating proved really useful. When we chatted about that he said how much he used to like fish, chips and mushy peas. That night we had some and
he probably ate three times more in that meal than he had in the previous two days!
We tried to fill Dad’s last few months with as much fun stuff as possible, such as finding any TV he cared about, but once the HE set in, he was bored of almost everything because he felt so crap. He could just about walk from his hospital bed in the lounge to the front door with someone keeping an eye on him, but it would knacker him out for a day afterwards. When we’d ask him what he wanted to do he’d say ‘nothing’, so we’d try different things and he always enjoyed them. Family would come and visit and we took him to Swanage one day in
his wheelchair. Although this was extremely tiring for Dad he really enjoyed it.
Constant itching
The district nursing team were brilliant before Dad died, helping to sort out equipment and provided useful tips. It would have been amazing to have their help months before but, sadly, that’s not how it works. Towards the end Dad was delirious, constantly itching and in pain, and was unresponsive in his last couple of days. When Dad died on March 9th 2022, my brother and I walked in from a different room and quickly realised it was happening, we phoned my mum and she came over straight away. We were all together.
Immediately afterwards the family did a whole load of nothing, apart from just being in each other’s presence. After a few months I had counselling. I had been quite sceptical of it, but it was what I needed. Just being able to talk to and cry to somebody other than my family – I would really recommend it. Eventually my emotions stopped occupying every minute, I found the energy to do things again and I returned to the gym and started a master’s degree in nutrition.
Mum only found The British Liver Trust by Googling a while after Dad had been diagnosed, it hadn’t been signposted by the hospital. It was only after he died that we started thinking about sharing our experience to help families in a similar situation. I also volunteered with the Trust’s publications team and a dietician on how to encourage people with cirrhosis to eat and contributed to the Questions To Ask Your Doctor web page. I remember being so blown away by the magnitude of what was happening with Dad that we didn’t take in what the doctors were saying. It’s so easy to be tongue-tied during your appointments and only remember afterwards what you wanted to ask, so hopefully the template can help.
Knowing about the information and support provided by British Liver Trust earlier would have been invaluable and I would recommend that people go straight to their website rather than relying on a busy hospital to provide that. We were in the dark for the first few months and the hospital can only tell you so much before they get the results back.
