Hi
How are you all coping with supporting your loved one through this nightmare? We have alcoholic cirrhosis stage 4 here and I am digging deep for patience!!
Karen
Spouses!!!: Hi How are you all coping... - British Liver Trust
Spouses!!!
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POSITIVEMUM3
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27 Replies
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Hi Karen,, having a tough time, its not easy is it? especially if you have a stuborn one that refuses help no matter how much pain he is in...Hugs for you
He'll take the help just such a long road ...
My spouse loves me to pieces and we don’t have alcohol problems here. However, he’s running out of patience with me because he has his own health issues and vice versa, because we both just have too much going on. It can be hard but, it probably would be a lot harder without them around xx
Good luck and may your patience increase!
Hello, my brother has Cirrhosis (alcoholic) with ascites and has been sent home as told after 6 weeks of different treatment, there has been nothing his body has responded to so medically no more can be done. I personally feel his attitude is very arrogant and snappy and not sure if this is alcohol withdrawal or what but he's very hard.to talk to now a different person .it's very hard for family and I just want to empathize with you x
The snappiness is the alcohol. My daughter and I just lost her dad to it after a month in the hospital. There's nothing you could have done to change the outcome. The problem is bigger than you. My thoughts are with you.
I'm sorry to hear about your loss. He seems a bit improved currently and only when he's woken up or tired is he a bit more short with people
Thank you for your reply
Good Morning Karen
I wish I could wave that magic wand for all spouses , carers and alike who are finding life's really tough coping with a loved one who's suffering with any kind cirrhosis or liver disease especially if its changed there personalities for the worse which I too can relate too!
All I can offer is to be hear for you when you need someone to chat with as most on here understand your situation from both sides.
In the meantime please take care of yourself and make sure your eating and keeping hydrated!
Love
Shropshirelass
Oh Karen, I feel your pain.... my husband was very very poorly like yours I expect, but my lovely husband changed, his personality, his temprement, his everything changed to quite frankly a misery to live with, vile tempered, argumentative you name it! I felt trapped as he was so ill but I was very unhappy and under any other circumstance would have ended our marriage, two years of hell! BUT.... he was transplanted 2 years ago, as soon as he was home his happy loving self came back, his sense of humour, his reason for living. I never thought we would get through it and still be together at the end, but I am so glad I didn’t give up (selfish I know but I had just had enough). No one knows how hard it is being the other half of a very poorly person, but I hope you will take heart that there is light at the end of the tunnel and whatever I was feeling it was nothing close to the desperation he was feeling. So yes, I do understand , you can only do your best. You also need to look out for your own health and some happiness too!
I Found it all frustrating and tiresome .. just the keep on keeping on. daily and hourly.. she is in a better place now with her ancestors
Sorry you are having a bad time. It is like living with a 2 year old why, don't want to, why should I. So frustrating and exhausting. Just waiting for them to realise they need to manage their own health for good but I don't think that will happen unfortunately. So each day at a time. Do something nice for yourself x
It is a real roller coaster.I kept telling myself it wasn't my husband talking and was proven right after the transplant when he came back.Definatly worth all the trauma and back to having a lovely life. Hang on in there. We all have your back here and and it helps to have a big grumble once and a while xxx
Wow I have just read all the posts and it's so good to hear that I am not the only one. It's gone from sharing to be relied on for everything and it's hard work. My husband used to have such a good business brain but now he sleeps most of the day. Most days he doesn't know what day it is, but I think that's partly because he doesn't go out and about anymore. Had a bad relapse in November to December but fortunately has been dry for the last 4/5 weeks. I get days when I'm so exhausted and frustrated having to remember and do everything myself. I'm not old but no spring chicken either plus I have Graves' disease which is autoimmune thyroid. Sorry if I went on a bit just glad there are people out there who understand 😊
Thanks to everyone for their replies. I am just exhausted but not as exhausted as him! We've together since we were 17 now 50 so been through a lot but this is tough because I can't see any light at the end of a very long tunnel. Mood wise he's okay 79percent of the time and knows what I'm going through. I'm meant to go back to work in a week or so but that seems so overwhelming. I'm a primary teacher
Hi Karen,
You have had some really supportive replies on this thread. If you need to have another chat today, give me a call.
Take care
Trust1/Rebecca
Oh I can so empathise with you Karen. My Peeps is end stage 4, not eligible for a TP and life can be sheer purgatory. I feel like I long since ceased to be a wife just a 24/7 carer. Life here is a constant rollercoaster and I really feel for you and those going through the same. Thoughts and support to you, Anne xx
Thanks Anne. Glad I'm not in my own! Any good advice please send it my way x
You certainly aren't alone, there are far more of us than l could ever have imagined. Love to all struggling through xx
Thanks Rebecca. I'll see how things are tomorrow and may well take you up in your offer
Karen
Do ring Rebecca, she’s helped me hugely, happy for you to pm me too, Anne xx
Hi my husband also has cirrhosis due to alcohol he was discharged on palliative care last September weighing just 55kg it is hard and if they have confusion too can be extremely frustrating . Just try to get through one day at a time is my advice and live for today and try to find something good in everyday. Most of all don’t get angry it’s a waste of energy and remember to look after yourself! He has been doing really well no alcohol and the jaundice has gone up to 66kg but now unfortunately has a wound on toe that will not heal. But we still try to get out a couple of time’s a week for a coffee and just enjoy the simple things like doing a crossword together take care and good luck
Thank you for the help. I think my big issue is we are only 50 and I can't work out how to go back to work and do all I'm doing for him. He will be off a bit longer obviously and we hope he can go back to work as works from home in IT buy I'm a primary teacher and the demand of that job are so huge I'm not sure I can do it all.
Karen
Hi I’m only 55 myself been home working and juggling caring for the last 2 years some days I’m so exhausted. I would like to say there is lots of help but in reality we are on our own. I have to rely on family on days when I’m required to go into the office but need to work to pay the bills. I really feel for you in your profession home working is not an option. Sorry to seem so gloomy but I can honestly say despite the exhaustion it is worth it the improvements we have made have astounded the professionals don’t give up but as I said you do need to try and find some me time
Thanks for this reply. It's so hard as to help him improve I need to be here but I will also need to work so quite conflicting! I am part-time as bizarrely changed my job this summer before any if this! But the level of work needed to do the job with planning etc seems overwhelming so my head is a mess!
Chin up Karen! I am a grumpy git husband and stuborn with it, but with end stage liver disease one just has to smile I guess. Give-up then your miserable, Fight, whats the point... so just sit with hubby, ask him to remember the good old days, talk crap to each other, discuss what it all means.. there are answers out their, but it starts with a smile and a chuckle.
Me ... I am terminal, no transplant option left, fit is a flee, age 54, just dying! My Mrs is just wonderful, bring me anything I want anytime... and boy if I could get "him" up I would... That would bring a smile to my face, but might kill me 
Wishing you well, it is what it is.... Hopefully like some the responses he gets treatment. John. UKMELD 62.
I agree totally we spend a lot of time chatting and just being together I’m fortunate in that I can work around the times he sleeps I often start at 5. O’clock on the days he struggles to get up I sit and have a coffee with him and talk about the good times wishing u all the best and keep positive
Hummm, I was asked by a couple consultants if I had day night reversal - what does that involve? I don't have it... I don't mean define with for me, but perhaps you can tell me what it means versus symptoms? I admit I can bearly get out of bed, and until I am up and around I really to not feel like moving e.g. bed between 9pm and 1am, wake 10am-1pm.
Any tips welcome!
