A message for the people who get left behind

[Spence23]

I have read through a lot of these posts over the last few months and wanted to reply with hopeful messages, to family members looking for answers to their loved ones illness, but I can’t think of anything good to say at all. My heart goes out to all of you on here; whether you are suffering directly from liver failure, or if you are a concerned friend or family member watching your loved one deteriorate before your eyes. I am writing this message to tell my experience of this illness in the hope that it finds someone feeling similar to me, or to warn someone similar to my mum.

From as far back as I can remember my mum has been an alcoholic. I remember things form my childhood that I wish I didn’t. My house was always filled with arguments and violence, which was all due to the drink. I can’t count the times I have been in accident and emergency or had the police at the door, or was taken to my grandparent’s house to be looked after….again, all due to the drink.

I am 23 now and my mum would be 50, instead she is dead because she chose to drink every single day of her life even when she was so ill she was sick blood every time she had a single drop of alcohol. My mum was not a bad person, she had a good heart, she was a very popular woman, had a great sense of humour, she was artistic, loved to sing and dance, and regardless of how she acted at times loved me very much.

From the first sign of my mum getting sick until the day she died was about 2 years long. Although that seems quite long, when I was watching it happen it felt like no time at all. My mum went from being a very high functioning woman with a full time job, who cooked and cleaned and did normal things; to sleeping on a bed in the living room and needing support to walk and carry out self care in a matter of months.

The first time she was admitted to hospital she had had a large bleed from her oesophageal varices. The Doctors took me and my step dad into a side room and told us that they were taking her down to surgery, but they didn’t think she would make it. We were devastated, but mainly in shock. My mum made it through the surgery and spent several weeks in intensive care. The doctor put a balloon down into her oesophagus to put pressure on the varices, and then banded them. The balloon is a horrible thing to see, it is on the end of a pipe that hung out her mouth, tied round a drip stand with a weight on the end. It looked very sore and uncomfortable for her and she could not speak with it in.

We felt completely drained mentally and physically by this, after spending everyday for the last few weeks sitting by her hospital bed. When we got home we were so relieved and felt very lucky still to have her. Although my mum had been told by the doctor that if she drank again she would not see Christmas, after a few days she was back on it. We tried everything to stop her getting it. But as soon as she was left alone she found it. She just didn’t believe it was that dangerous and seemed to completely forget how ill she was a few weeks previous. Another month passed and we were in intensive care again.

In total I couldn’t tell you how many times she bled out and almost died. But on average it was out for 6 weeks, intensive care for 2, out for 6 then back in again. This went on for months. I was terrified every time I popped over to my mums to check on her, several times I found her in a pile of blood, having a seizure, or almost unconscious. Her final week was spent in intensive care. The first few days she had the balloon down so couldn’t speak. When they took it out they realised there was no stopping the blood this time, she was also swollen to capacity, very confused and her other organs such as her kidneys were now affected. So again we were told this was it for my mum. My step dad, my partner and I spent the full week in the hospital. Only going home to change clothes and freshen up. It was awful, just a waiting game and I have to admit at times I just wished it was over. Watching someone you love in extreme pain, as well a loosing there mind and knowing there is nothing that can be done to help is the worst thing imaginable.

After a lot of suffering she died at 20 minutes past 12 on Boxing Day 2011. The three of us stood in her room, holding any part of her we could reach as the room was filled with nurses trying to contain the blood using suction equipment. It was a horrible and very undignified way to die and was horrible to see, but I thank god that the three of us where by her side till the end.

It is two months since she died. I have unbearable guilt; even though I know I did all I could. She was so young and such an amazing beautiful person crippled by such an awful illness. I can’t get my head around the fact that she won’t be there when I get married or when I make her a granny, as well as doing all the things she and my step dad had planned with their life. It is so sad and such a waste and I know my mum will be looking down right now feeling the same. I miss her every second of every day. I drive by her house expecting to see her, but she is not there. The pain of seeing my mum’s life ripped apart before my eyes will always be with me. I am hurting, angry, regretful and long to turn back time.

Alcohol destroys lives every day not only in the long run. If you are reading this and you are in my mum’s shoes, please listen to the doctors. You have no idea how bad end stage liver failure will be for you, as well as your family. And if you are reading this because you know someone with liver failure, do all you can to stop them drinking. But this is usually not enough; it is very much in the hands of the individual. My thoughts are with all of you, who have to go through what I already have. But my thoughts are mainly with the people who will go through what my mum did, take this warning and think about what you and your loved ones will go through. Life is a precious thing, look after it.

Yvonne

[Spence23]

Thanks for taking the time to read my story and thanks for your kind comments. I wish Randy all the best with your health, look after yourself.

Yvonne

[rpooo]

Yvonne, I have seen this post around a couple of times lately and for some reason I have only read bits and pieces. I think it may be because there is so much reality in it. this time I made sure to read it all. Thank you very much for posting it. I am really sorry about your mum. She really must had been amazing, to have such a wonderful impact on you. You have a real talent for putting together your words. I'll never skip over a post you've made ever again. I bet your mum is very proud of you.

I wish there was something I could say back to you to make everything in your past better but unfortunately there’s not. As for your future I truly wish you the best. God bless you.

P.S. I to have cirrhosis and I really liked your advice. It is absolutely right!
" But this is usually not enough; it is very much in the hands of the individual."

Randy

[Jennybates]

That was nice.