When Melanie was diagnosed with alcohol related liver disease her daughter Roxanne learned everything she could about the illness so she could nurse her at home. Now, almost a year since her mum passed, Roxanne is dedicating herself to the British Liver Trust to help other families in a similar situation. Thank you so much for sharing your story with us, Roxanne.
My mum, Melanie, sadly passed away in March 2022 at the age of 52, but if you looked at her you would have thought she was 82. Maybe if she had stopped drinking we could have had her for another ten years, but she couldn’t find the strength. She only realised what she’d done in 2017 when liver disease became an issue. Until then she’d been in denial.
The past was always there for mum, but she never had any counselling and none of her issues were dealt with. There weren’t the signposts then that there are now. Mum was brought up by her grandparents and when they died, she and her sister were put into care. She had me and my brother at a young age and when my brother was around two years old and I was three, my dad stabbed her with the intention of taking her life. Dad was put in prison for a long time and mum turned to alcohol – it became her crutch.
She was good with us and we were looked after – fed, watered, bathed and all that. She did it all single-handed too, but she would drink from the morning onwards and have at least eight cans a day.
We had five schools and 14 homes and kept moving because of the drink and the abusive partners. She led a destructive life and would end up in violent relationships. We would get anxious sometimes and think ‘here comes the alcohol, here come the arguments, he’s angry, mum’s going to get hurt…’
We hated it, but as a child you don’t say to your mum: “Why are you drinking again?”. It’s only when we became adults that we started understanding the reasons why.
Mum was diagnosed with cirrhosis and we were told it was the alcohol
When me and my brother got to 16/17 years old in around 2007 we became independent, but we were always there for mum. She had two grandchildren from my brother and she loved that and would get out and about, but it was obvious she was depressed and masking it with alcohol.
She didn’t actually see a doctor until December 2017 when she was in her late 40s. Her legs had been swelling before, I thought maybe she’d been on her feet too much. But then she had a fall, hurt her back and couldn’t get up off the settee. We got the doctor out and he noticed her stomach was quite swollen. After quite a few tests they said it was the start of liver cirrhosis. We were told it was the alcohol, but didn’t really take it seriously at first. Mum seemed normal at that point and we just thought all doctors moan when you’ve had a glass too many.
But in the space of a few weeks she’d gone from being mobile to not being able to get up to go to the toilet. Mum didn’t want the attention, but I was scared so I rang the doctor. She was admitted to hospital for a week, where she was drained – they took 12 litres off her – and given new blood and all these tablets, including water tablets. Her recovery was OK and she did get some of her mobility back, but her liver gradually became decompensated.
I started recognising the warning signs. Mum would get more yellow, not sleep and her breathing would change
I didn’t have a clue about liver disease, so thank God for Google. I put myself on a learning path – to find out about liver disease, ascites, what was happening to my mum’s body and what to look out for. Because of that I started to recognise the warning signs such as her getting more yellow, not sleeping a lot and a change in her breathing. Mum would go from being able to get out and about to being like Mrs Blobby when she filled up. I became a home nurse and it was very stressful.
Mum broke down on me loads of times and would say “I’ve put so much on you” but I would tell her “I won’t be able to sleep at night if I know you’re not ok”.
It taught us a lesson about alcohol and mum realised what she’d done. She stopped drinking for six to eight months and later restarted but would only have two or three cans a day, like she had become sensible with it.
I watched her being depressed though for all those months after she’d been drained and when she said: “Will you go get me drink?” it was hard for me, but I wanted to make my mum happy. If I hadn’t got it, she would have got someone else to go – she couldn’t go herself because she was having mobility issues by then.
Three years later mum’s blood tests showed she urgently needed to go to the hospital to have new blood, because the water tablets were affecting her kidneys. The doctors took her off the water tablets then, but because of that she filled up even more. She was given them back after that, but it didn’t help things.
The last time she was sent to hospital was in February 2022 because of her breathing, she had all these long pauses and she was bright yellow. I was scared. They put her straight on oxygen and wanted to do blood tests to say that her liver was failing, but they were finding it hard to get a vein because she was that swollen from the fluid. She was put on yoghurts and liquid medicines because she couldn’t swallow.
In my head I thought she would come home one more time. Every day when I went to visit I’d ask the doctor “Is my mum OK, is she dying?” And they would reassure me and say “She is very poorly, but we don’t think so”.
I want to dedicate myself to the British Liver Trust, in loving memory of mum and to help others
On the sixth day after mum had been admitted I’d seen her as normal in the afternoon, but by 10.30pm the hospital was ordering me up there because her breathing had deteriorated. I always promised that I would be there to say goodbye and only live eight minutes away from the hospital, but I didn’t get there in time. The doctors said that one minute mum was OK and talking, but within two minutes there were two vomit bowls of blood and she just went. Maybe she didn’t want me to see that.
I knew one day the illness would kill her, but I didn’t know it was going to happen that night. She was only young. The first month after I was in shock, now nearly ten months later I’m on stage six out of seven on my grieving. I know she’s dead, I’ve accepted she’s dead, but I just miss her.
That’s why I want to dedicate myself to the British Liver Trust, in loving memory of mum and to help others. I don’t want any other family to go through this. I’ve signed up to donate and for the stigma campaign. Mum didn’t experience stigma, but I can understand it. People might think anyone who drinks has done it to themselves, but they don’t know that person or understand why they’re drinking. It can happen to anyone. Drinking is an illness not a choice and people who drink still need treating.
I would say to anyone in a similar situation to me – if you need help, go and ask for help, there’s a lot more support out there now than there was. Don’t turn your back.
There wasn’t a day that went by through my mum’s illness that I didn’t see her and I’d do it all again, I really would. I was born depending on my mum and she died depending on me.