Help for partners of cirrhosis patients

[Lisa-H_1]

Hi all, how are partners of cirrhosis patients feeling? How do you cope? I feel so down for him and also the change in my life. It is so hard to think we can't get that back and i feel just so down with things and sometimes a little resentful that he did this to himself and we all suffer. No one else knows he has cirrhosis so i've no one to talk to. Any advice/comments etc very welcome. Thanks....

[Hidden]

Hi Lisa. I know exactly how you feel. I have been through the same. The rollercoaster of emotions, from loving him and wanting to help to fix him, to resenting the alcohol which has stripped him of everything you loved about him to hating him for not listening, not seeming to want to give up drinking to the realisation he actually can't.

I too hid what was going on to the outside world. I told his Mother and sister what was going on but they were as much in denial about how much and how often my husband was drinking as he was. They didn't believe me when l said he was ransacking bank accounts and stealing our son's paperound money to feed his habit. Until the day l couldn't take any more and dumped him at his Mothers, so that l could be in complete control of my own and my children's future, security and happiness. It was only while he was living at his Mum's that a penny seemed to drop and the realisation that he was going to lose everything he treasured if he didn't do something about it. He was seriously ill by then, yellow from head to toe and carrying around 2 carrier bags of medication. He got 1 to 1 councelling and kicked the booze for 3 months when l could see the man l first fell in love with starting to emerge again.

I realise now he was a tortured soul, introduced to the pub culture far to young and when things got tough it was the bottle he reached for. Sadly there was not a happy outcome for us and l have often wondered since, if l had kicked him out sooner, would he have given up drinking sooner and survived? But what is to be will be l guess and although it was a horrible chapter in our lives, my children and myself have not allowed it to define us and are thriving and living a very different but very happy life again.

If you need any questions answered or support just shout anytime.

Laura xx

[Richard-Allen]

Hello Lisa

This is often very hard for people to understand. Understanding the alcohol mindset can be a complex issue, but most people who suffer from an alcohol problem do so for a reason. Behind nearly everyone, there's a story. So try and understand what is behind the person.

Over the years of being on this forum, we have befriended many people who have experienced many traumatic episodes in their lives. Those scars run deep, and many seek solace and use alcohol as a crutch. For them, alcohol becomes a form of self-medication. Alcohol for a while can make a person feel good about themselves, it allows them to forget and be at peace with themselves.

However, that feeling of euphoria doesn’t last very long, and with alcohol being a depressant, this only helps to compound the problem. A person will then drink even more to try and reach that happy medium.

This is about cause and effect. If the cause of someone’s need to want to drink was treated and addressed, then the effect being the need to drink wouldn’t be required.

Take that man lying on a park bench, clutching a bottle of vodka. He is looked upon as a drunk, a waster, we often just look upon him with disgust and walk on by. What we don’t see is a broken person who has done three tours in Afghanistan and seen his best friend blown to bits.

Yes, nobody forces someone to drink, it’s always their fault. It’s easy to blame someone. But what they most likely need is a little compassion and understanding.

I personally don’t like the word “Alcoholic”, as many people get wrongly labelled. Yes, alcohol can become an addiction. But in nearly 80% of all serious liver damage cases, the person isn’t addicted. They may well have a problem. They are drinking because they want to, not because they have to.

The blame game won’t help. It can even have the opposite effect, (in for a penny in for a pound). Many people with alcohol issues suffer from other mental health condition. Back in 2015 a research program that was carried out at Edinburgh University, concluded that there was a link between mental health and liver disease: youtu.be/bAjQQZ9Htqw(Not working as expected?) Further research into this is still ongoing.

Back in October 2020 a report published by the Royal College of Psychiatrists found that two-fifths of patients waiting for mental health treatment contact emergency or crisis services, with one-in-nine (11%) ending up in A&E. In my particular area, there is a five-month waiting list to have a referral at MIND. It’s easy to see how some people may turn to alcohol to find peace of mind, especially during the Covid lockdown.

What I’m trying to point out is that blame really isn’t fair. Your husband is going to need a lot of understanding and compassion. The liver journey can be a long and hard one. He needs to know that he can do this, and want to do this. He needs to know that he’s loved and valued. Have no fear, he will be feeling full of guilt, and remorse. So please try to avoid the blame game.

Try and adopt a positive approach, I realise it’s not easy. “This is what’s broken, now what do I need to do to make it right?” Forget about the past, but try and learn from the mistakes. Look to tomorrow with fresh hope for the future. Be strong and believe that the man you married will soon be home and free of alcohol.

I hope this helps.

Best wishes to you all

Richard.

[Lils2019]

Hi Lisa,I’m on this journey with my husband too, and like you I find my emotions difficult to handle sometimes.

I will support him and he knows that, I’m always there for him and will talk things through with him.

When he was at his worst with his drinking, I needed something, I needed to get away from this house and all the drama and chaos. I decided I was going back to full time work and that’s exactly what I did.

I find that been in work helps me re focus, and absolutely love my job, and that it’s something for me, I have a life too.

I also have a wonderful dog, and when I needed a break I used to take her out on nice long walks just to clear my head.

It’s a hard road sometimes, and we need to take time for ourselves too, and we’re not been selfish.

Take care x

[Lisa-H_1]

Thank you all for your responses. With no one to talk to i need to hear exactly what you think. i am there for him and after vomiting blood and 3 bands he hasn't drunk since. He did cut out booze 90% when first told but still had a few cans on a Saturday. Hopefully this latest stay in hospital has shocked him into not drinking. He hasn't drunk since 1st March not long but still good. i'm changing things at the weekend so we don't do the usual stuff but god it is hard. He is not a talker but i will need a chat with him soon just to ensure he is on the right page now.

Sorry about your experience Laura, Richard thanks for the insight and Lils yes i keep busy too just upsets me at times.

Thanks and any other honest remarks welcome.

Lisa

[Richard-Allen]

For me, having that variceal bleed was my wakeup call. Hopefully this will be your husbands too. This is where that conscious decision to want to stop comes from. That wakeup call is really the person deciding this is enough. I want to stop.

But, sadly not everyone has this wakeup call, or if they do, they choose to ignore it. We've had people on here who have been in hospital for a few days, and even longer in some cases, come out after having had a variceal bleed and go straight to opening a can of beer. (It beggars belief).

I really hope everything turns out for the best Lisa, It's good to know he has your support and love to see you both through this. I have personally been down this road. I've not had an alcoholic drink since 2014, nor shall I ever. It can be done, so never give up hope.

Good luck to you and your hubby.

Richard

[Lisa-H_1 in reply to Richard-Allen]

Thank you so much that gives me hope from your reply- all the best to you.

[Whip_pet]

My husband has recently been diagnosed with liver disease and was not expected to live following recent sepsis. I feel all your pain and the emotions experienced. My husband is home now and is doing well not drinking, but I feel a little resentful too as it affects my life too.

I send you best wishes and hope we can support each other.. message me if you want a chat

[Lisa-H_1 in reply to Whip_pet]

Thanks, nice to know you feel the same. I don't like feeling resentful and must change that but very hard. Pleased your husband came through sepsis, nasty business, and sounds like he is getting on the best he can. All the best

[jazzjam in reply to Lisa-H_1]

I understand you don’t want to feel resentful but I totally understand why you do and don’t beat yourself up about it. I would bet 99%, of the time in your head, is given to your husband and 1% is spent on yourself having an angry time in your head.

[Ewife]

Hello! I nearly posted the same question today but wasn't brave enough! I'm really struggling with everything right now - not sure why its suddenly hit me - but I suspect it might be coming out of lockdown. Everyone is talking about getting back to normal, but for us, life is just never going to be the same. My husband has gone back to work - first time we've been apart since he was in hospital- and I'm lost and lonely all day. I wonder if its only just hitting me now how poorly he is. He is on the register for transplant and so far have had 2 calls to go in - but both cancelled before we arrived at hospital. Thanks to Covid I will have to wave goodbye to him at the ward doors, and don't know where to go or what to do whilst he is in surgery. Dont know when I will get to see him again.....I'm absolutely dreading it. Im struggling with nervous anxiety type symptoms, cry way too much and am horribly insecure/possessive over my poor husband. At this rate he will be glad of a break when he goes in!!!! Sorry for the long message but so relieved to see someone else struggling too. Like you say, there's so few people around that actually understand what we go through. I feel like I should just be in the background being strong, but hey, I'm just having my turn for a bit....and soon I hope I will feel strong again when its needed.

Take care of yourself

Xx

[Lisa-H_1 in reply to Ewife]

Definitely think you are right, coming out of covid and doing normal things which we can't get back to as going out is hard when trying to give up the booze. I'm trying different things, early dinners, shorter time just the two of us, when we do go out with friends in May just not sure how he will cope. I feel the same fine and then not. Keep your chin up and all the best to you both.

[jazzjam in reply to Ewife]

I am sorry to hear this. Have you had a chat with someone about how you are coping. Our body and mind, especially the mind can only hold being strong for a period of time, it will wear you down and come back to bite you on the bum. You need some time when you only think about yourself. Whilst he is at work could you go out walking st least? Or get into a good book, a new hobby? Something to take your mind from the stress if the worry.

[Lisa-H_1 in reply to jazzjam]

i haven't spoken to anyone about it hence i get good days and can get on with things then others like today feel very low/tearful - i don't show that to my husband, i dare say tomorrow i'll be fine. Rotten things to have. x

[Ewife in reply to jazzjam]

Thankfully I'm always very aware of my mental health - don't see any shame in admitting if I'm struggling! I've been quite open with those that know me and my Drs. But I think you're right, I've been going through a period where I'm not coping as well. I've had a rough few weeks, the kids school closed again, directly after having 2 failed calls for the transplant, which I think is what tipped me over a bit. However, I'm starting to feel stronger again. I think a lot of my issues are actually delayed reactions to everything that has happened this past year. As my husband has gone back to work, and lockdown has eased I finally had space to process all the horror of what has happened. As Lisa-H says, it's not easy showing your sick husband how you're struggling - but I did actually tell him in the end, and its helped him to see what I've been going through alongside him. He's been very kind, and the shoulder to lean on that I needed for a bit.

[jazzjam in reply to Ewife]

Oh that is lovely that you have managed to speak with your husband. I think a lot of mental health issues are built up over a period of time, like you, holding it together, being strong and then one ray your body/mind says, enough I need to regenerate myself to keep going and thats when you see it. Thats how I thin’ about it. It is very hard for you.

[Ewife in reply to jazzjam]

Yes, I think I needed that brief crash so that I'm strong enough for the next stage. I can see that now. Still not feeling perfect, but improving every day thankfully. It's tough but I spoke out because I want others to see that it's OK to have a little dip, it's a mental marathon we're running, not a sprint. Looking back, I wasn't giving my self any time or consideration, so I'd urge folks caring for loved ones to not make the same mistake.

Xx

[Corrine1]

Hi LisaMy husband was diagnosed with end stage liver disease about 18 months ago and has recently been put on the transplant list. He is a changed man and seems really depressed. He cant sleep at night and so doesnt usually get up until afternoon. Hes always cold and exhausted. Our relationship has completely changed from how it used to be and I am finding it really difficult as being the only person to support him and not getting any support myself. I'm finding it hard to cope. All plans for the future have had to be put on hold. A lot of people who I thought were friends seem to have disappeared off the scene and I have no family living near by. I think it is very difficult for partners of those with cirrhosis and so hard to get support and look after your own needs.

All the best xx

[Lisa-H_1 in reply to Corrine1]

it is incredibly hard and sad etc. I know exactly how you feel. Hope you feel a little better soon, i go from good to sad and low. Hate feeling like this but can only hope things improve. All the best to you both.

[Hidden]

Hi

I have felt this from both sides, being very ill for 9 years before my transplant my wife totally supported me.

I am now fit and well and she is very poorly and relies on me to do most things, it seems we did not get chance to get our life's back to normal only managing one holiday before Covid and she became unfit to do much else other than sit and rest

Most days you just get on but on others, it feels unfair and I get angry and depressed for what appears no real reason. I then grab a couple of hours for a little me time and get over it.

It not easy, but I love her and taking a little break I find is a big refresher

In your cases I am proof that life can come back after a transplant so I hope it is only part of life's journey and next station is a better place

David

[Lisa-H_1 in reply to Hidden]

What a tough time, all the very best to you both and thanks for words. Lynn

[Hidden in reply to Lisa-H_1]

Thanks it’s not easy for so many

David

[Corrine1 in reply to Hidden]

Hi David

It's good to hear you are fit and well post transplant but sorry to hear your wife is not well. At least she has you to help her now. It's strange how life turns out isn't it? We never know what's round the corner. My husband has been told his life expectancy is 12 to 19 months if he doesn't get a transplant. It's a bit hard to process this information and know what to do with it.

Best wishes

Corrine

[Hidden in reply to Corrine1]

I understand how that feelsI was told I had about 6 weeks left when I got mine

The waiting by the phone is hard

I went twice the first time the liver was not suitable

The second time it went really well

The hospital monitor the situation very carefully and they push you up the list

I had a difficult blood group and needed a living liver, but when it was really needed it was found

So keep positive I am sure it will happen

Each time the call came in the early hours

The beast of the east was in full swing as well

Quite a night

I will keep my fingers crossed

David

[Supportinghubby]

It is hard. My husband has cirrhosis (discovered after a variceal bleed) and so far it's not affected him too badly, he works full time, has loads of energy, does lots of jobs around the house & garden etc. I think because he doesn't feel too bad he kind of forgets it. I'm really grateful he is this way. It was caused by alcohol, he was a habitual daily drinker and luckily he didn't struggle to stop drinking.

Yet the other day he posted a supposedly 'funny' meme on Facebook with a picture of a toddler being given a swig of beer by an adult with the caption something like 'the good old generation before they turned into a load of sissies'. A number of his family had liked it & commented on it - his family are known for liking a drink and they wear it like a badge of honour. I was so upset he posted it thinking it was funny & it made me angry too. He was surprised I took it that way & said he didn't think anything of posting it. I said I was so mad that his family all think drinking lots is something to be 'proud' of & if I could go back in time I would do anything to stop him drinking. He is the loveliest husband but I just don't think he realises how it affects me - emotionally or practically (life insurance, ability to go on holiday etc.) Sorry - I've gone on a bit there - just wanted to say that I understand how you feel!

[Lisa-H_1]

It is good to hear from you and your story. My husband works full time and is very well in himself. It is not easy for him to give up but since 1 March no booze. Clearly a long way to go. Very insensitive of your hubby. Nice to know I’m not alone in that he doesn’t realise how I feel such a mixed bag of emotions as I’m devastated for him but down for me as my life has to change so much. Time is a good healer. Having a bad day today so must put things into perspective that he feels good etc . All the best to you both. 😊

[Supportinghubby in reply to Lisa-H_1]

Your hubby sounds similar to mine, although obviously has had a harder time giving up the booze. I just read your other posts, in terms of going to the pub, me giving up drinking etc., he seems (unless he's an extremely good actor!) to have adapted really well to being able to go out & enjoy himself while others are still drinking. Luckily I'm not a big drinker but I do like a glass of wine now and again & he said from the beginning that he would hate to feel like people had to adapt their behaviour because of him so he made me promise to carry on as I normally would. If he'd asked me to stop drinking I would have though. Hubby was diagnosed in 2018 so we have had time to adjust, hopefully you will find it easier to deal with as time goes on x

[jazzjam in reply to Supportinghubby]

I said the same to my husband. Things changed for me as I was very weak for a while but I had jobs to do so I did them albeit a bit slower. I never asked him to stop drinking or going to the pub. He said he would but I didn’t see the point, life needed to go on. Drink was never a problem for me I just enjoyed it (they initially defined the cause as alcohol but as it turned out I also had a bad time with my lungs which they never found out the cause either so they have never been definite about the reason, whether an infection got in there? i had already been on strong antibiotics, intravenous before they checked my liver). Anyway I didn’t go out myself initially just because I felt unwell but after a time I did. It doesn’t bother me other people drinking until they get to that silly point, laughing at things because of drink and not because they are really funny or telling me they love me over again. At that point I make my exit 😁. I will leave husband there if he wants to stay. I hope your partners all get back to being well again and you can still go on the holidays just unfortunately the insurance being high but I have been on 5 or 6 great holidays since I was diagnosed with cirrhosis, I went to any restaurants and just looked for food with the lowest salt or I asked them to cook without salt, it was never an issue. All the best 🌻

[Supportinghubby in reply to Lisa-H_1]

Also, although we haven't exactly broadcast it, we have told close family & friends about his cirrhosis. I an very defensive of him as I don't feel like he drank anymore than a lot of other people, he just got in a habit and never had a break (in my mind he was unlucky although obviously not in the same way as people who have cirrhosis & don't drink). It is good to be able to talk to people if I'm having a bad day. Perhaps you could consider confiding in people close to you?

[Lisa-H_1]

Exactly the same with mine - yes quite a big drinker but then so we’re all his friends and as his consultant said there are loads of people with unknown fatty livers who don’t know and a very small percentage who get unlucky with cirrhosis.

Thank you for your words and I hope my hubby can enjoy social events as yours can going forward. He certainly doesn’t yet have ‘don’t change for me’ attitude which does hurt sometimes.

I only drink at weekends and will only have 2 drinks on a Saturday in front of him.

Nice to chat. 👍