Early days: My husband was diagnosed... - British Liver Trust

British Liver Trust

36,529 members17,973 posts

Early days

lstitch profile image
39 Replies

My husband was diagnosed with Cirrohsis a few weeks ago. Yesterday we spent 9 hours in A&E where we were told he had an umbilical hernia (another unexpected result of the Cirrohsis). He spent the night in hospital and was told today that they were not going to operate. He also has hepatic encephalopathy, so it’s very difficult to get any sense out of him.

The reason I am writing this is because I feel very resentful towards him. He ruined my life and that of both of our sons because drinking was more important to him than his family. He has made himself ill and now I have become his carer. I know it is my choice to stay, but it’s not in my nature to walk away. Also it feels like grief as I miss the kind funny person I married.

I don’t have a question as such for you. I just need to be understood

Thank you all

Written by
lstitch profile image
lstitch
To view profiles and participate in discussions please or .
39 Replies
jessicalou48 profile image
jessicalou48

I can agree with you there. I am struggling with my husband. diagnosed cirrohsis (not alcohol) in jan . two emergency admissionsthis year. He wasn't right the last two years, main issues were memory loss and personality changes. Right now I actually detest him. He isn't taking full responsibility for himself. I want to run away. I need somewhere just to let these words out

Hdon profile image
Hdon in reply to jessicalou48

What caused your husband's cirrhosis? I only ask as the symptoms you describe can often be associated with Haemochromatosis, which can often go undiagnosed.

jessicalou48 profile image
jessicalou48 in reply to Hdon

Hi. It is non alcoholic fatty liver disease. Had symptoms for nearly two years , not realising what it was . Only prompted to go to hospital after varicies in oesophagus ruptured and lost four pints blood 🥺

Bluescarf123 profile image
Bluescarf123

I’m so sorry for you, your sons and your husband. It’s a very difficult time, frustrating and upsetting and emotional. He’s very lucky to have you.

I’m in a similar (not same) position of being a wife, carer, worker and having children to look for while hubby has alcoholic cirrhosis. He’s just home for 2 weeks after a 6 week hospital stay, with HE too, its being treated with lactose and rifaxamin, so there is some hope there, its improved but still symptomatic. HE can also mean no driving (another burden us carers have to shoulder). I understand the feeling of grief, the loss of the person he was and also the future you had planned. It’s been really hard for us and will carry on being so, I feel for you all I really do.

There is hope, there is support, people have told me to look after myself so I can look after them. Put your oxygen mask on before helping others (like they say on the planes).

lstitch profile image
lstitch in reply to Bluescarf123

I feel like everything is falling on me and I haven’t enough time or energy to do it all

Positive001 profile image
Positive001 in reply to lstitch

Include other family members in helping care for him, even if he insists you do it all. Don't give in to his demands don't let him have the power to destroy you. His family members may well be in denial about his illness and addiction. The only way for them to know what it's like for you is to hand them the reins. They realised once l had dropped him at his Mother's with all his possessions otherwise they would never had believed me.

borzoiharvey profile image
borzoiharvey

I don't know what to say to you about your terrible situation, except look after yourself as this can't last forever (though it may seem like it). Get help luv, as much as you can. Wishing you well Sandy

lstitch profile image
lstitch in reply to borzoiharvey

Thank you. I start with a sort of counselling next week. Hope it works

Ewife profile image
Ewife in reply to lstitch

Good. Find a good therapist you can really vent your feelings with. I keep saying this but you're grieving for the loss of a lifestyle and identity. You also will be dealing with anticipated grief - but hoping things will not be this bad at the same time. It's tough. The best thing about having therapy is that when you dare to say the things you hardly can admit to yourself- they just say " I know", or "that's normal" and it makes you feel like finally someone out there understands!! Can't recommend it enough. Atb

lstitch profile image
lstitch in reply to Ewife

I have an appointment with a therapist on Monday. I have had an initial chat with him and I felt comfortable with him. Hopefully it works. This horrible feeling of resentment is hard to live with

Ewife profile image
Ewife in reply to lstitch

Yeh, I really understand that. Makes you start along those thought patterns of not liking yourself too which is never good☹️ I always feel so guilty too when I struggle

LemonMeringue15 profile image
LemonMeringue15

I really feel your pain. My story isn't the same as yours as I left my alcoholic ex. But his drinking did and does impact on our kids. Even now he's killing himself with drink, he still can't put our children first.I wanted to send you strength and compassion. You absolutely must prioritise your own mental health

Richard-Allen profile image
Richard-Allen

Hello lstitch, I totally understand your frustration and resentment toward your husband at this time. It may seem so selfish of your husband to have caused all this upset.

There often comes a need to take a step back and look at the bigger picture, and to try and understand not only what is going on now, but also try and make sense of where it all went so wrong. Normally there are other underlying factors at work.

People can develop an alcohol problem for many reasons. When we are young and invincible, we learn to associate alcohol with “having a good time”. For some people who lack self-confidence, it can make them feel more acceptable. While for others it can become a way of trying to forget a traumatic episode in their lives.

Alcohol can become a person's best friend. After all, it tries and makes us feel better, and it’s always there when we need it. For many people, alcohol becomes a treatment for depression, in the form of self-medication. The downside of all this is that alcohol is its self is a depressant, and It will cause an even deeper depression. So, a vicious cycle of events occurs. The person drinks to feel happier, but in doing so, makes them even more depressed, which in turn causes them to want to drink even more.

Understanding the reason behind wanting to drink is the first starting point. It’s very much a case of, “cause and effect”. By understanding and treating the cause, the effect becomes redundant.

To try and explain this further, there was a lady on here some years back now, and I often think about this sad case. This poor woman was in her mid-thirties and she had developed liver cirrhosis due to alcohol abuse. After exchanging several private messages, she finally opened up and told me that some eleven years previous, she had gone out one evening, and had been raped. For eleven years this poor lady had not only not told anyone but had blamed herself. She had self-medicated with alcohol to blank out the memory and to try and feel better about herself.

Even now I often think that had this lady sort some help and support with this traumatic episode in her life, then she’d still have a healthy liver.

The person who calls in to the pub every evening after work develops a lifestyle habit, a routine. This person is now drinking not because they particularly want to, but because they don’t want to go back to an empty, lonely flat. They are drinking for companionship and company.

What may surprise you is that some 82% of people who go on to develop a serious liver condition through alcohol abuse do so because they chose to drink. That lady who was self-medicating was drinking because she chose to. The person who goes out partying every night is drinking because they want to. They may certainly now have a drinking problem, but ultimately it is still their choice. We all know that alcohol is an addictive substance and once that addiction starts, the person is no longer drinking because they want to, but because they have to. The addiction has now taken over and is driving that need to drink. This is now very much a mental condition.

So, in dealing with a person who now has an addiction problem, care is needed. Blame and anger will only fuel a relapse. This person is most likely at a very low ebb, even suicidal in some cases. They hate themselves for what they have become and will try and push people away. Guilt is a heavy burden. Add HE to the mix and this is a very confused and messed up person.

Here, people, family and friends need to be strong. They need to look at the problem with a fresh set of eyes. “This is what’s broken, now what do I need to do to make it right?” This is a time for support, not anger. Being strong and positive is the secret to success. There are many people on this site, like myself who have been down this alcohol road and have come through and turned their life around.

It can be done. So just hang on in there, be positive and look to the future. That husband you married will return if he has the love, support and understanding and the will to want to live.

There’s nothing broken that can’t be fixed.

Good Luck to you, your husband and your family.

Richard.

lstitch profile image
lstitch in reply to Richard-Allen

Thank you Richard for your very positive reply. I know you are right but I’m having trouble getting there. I’m starting a course of therapy next week and hopefully that will help. I feel better just knowing that I’m doing what I can to address my negative feelings

Richard-Allen profile image
Richard-Allen in reply to lstitch

It may not seem like it, but sometimes I think we have to go through so much rubbish in our lives in order to get to a point now.

I went through so much in my life, but am now able to be part of three liver-related trials. Using my experience to hopefully help others is always a postive way forward. You too could share your experiences and who knows, maybe later become a councillor yourself.

Ready for a cliche? "Today is the first day of the rest of your life". Embrace a new beginning, and be strong.

Aotea2012 profile image
Aotea2012 in reply to Richard-Allen

Incredibly well put.

Louby1954 profile image
Louby1954

I understand as my x husband of 31 years married was a alcoholic addicted to prescription drugs & fags. I didn’t leave early as I should as both my children doing exams. Could of ruined there life’s forever. Eventually my son moved out my daughter was saving for her 1st home to buy. I could not wait any loner & one January night I walked out as mental abuse was flying at me Went straight to solicitor to file for divorce. The Judge awarded me the divorce on the grounds of mental abuse. Kids were ok with it all which was good. Judge awarded me halo his assets which was huge amount of money. He had to sell up & move out. He ruined many many foreign holidays by getting drunk & hiding bottle all over the place. One particular holiday in Minorca he said he didn’t feel well so took him to dr who asked him if he had been drinking excessively he said no, I was nodding my head yes

They admitted him to a hospital & was bringing in a scanner to look at his liver

On the Saturday. Our two children had joined us for 2nd week

We. Ad to change apartment

Told them to go out as it was last dat, which they did

I went into hospital to talk to him to ask if he was ok to fly home later that night he said yes. Went to reception to demand his passport back they said they could stop us at airport. Took the chance bought some bread & baked beans got him back by taxi. Made him eat them the called taxi to airport. Nearly missed the plane, they were all waiting for us to arrive so they could take off

Imagine it my son was by window seat suffering sun burn, silly boy did not put sun cream on

My daughter in middle moaning about having to drive home, slapped her head on my lap & stroked her hair & forehead always calms her down & x hubby other side of isle lookin sheepish. I prayed that we would all get home safely, which we did. He said he went to local hospital on the Saturday which he didnt

It finally caught up with him & he kept phoning me I was in training for London 2012 at the time. Said to him if you don’t answer your phone by 10am tomorrow david & I are coming iver. He said don’t do that please. The phone calls continued

Then at long last got the phone call I wanted to hear he asked me to help him which I did & got him into rehabilitation where he stayed for months all credit to him he came off alcohol fags & prescription drugs all at once he is still clean & has just been to stay with our daughter & family & then went to stay with son & his family

If I had not helped him he would of killed himself & have no relationships with our children or granddaughters

He looked like & smelt like a tramp the house was in a disgusting state & my son & daygher and there other halos went round to clean it, it was my daughters house he rented to him & moved in with her boy friend it’s now been sold

He & I get along and my David shake hands & talk to each other. Very important when at granddaughters birthday parties to show them we all get along.

Hope you find the courage you need to find & get him into rehab asap

Plenty more horror stories about him. It goes on & on this is just one example

Be thinking of you chat any time if you want to

Alcohol is an addiction that is recognised in UK he has to want to do it though it’s tough but it will be well worth it xx

lstitch profile image
lstitch in reply to Louby1954

From all of the replies I’ve had I feel a lot more positive. Thank you

Louby1954 profile image
Louby1954 in reply to lstitch

That's good. Stay positive as you canDo best you can always

& look after yourself 1st always

Have a good Wednesday

Big hugs xx

RustyTractor profile image
RustyTractor

Hi I just wanted to say I also know where you are coming from. I feel total resentment and anger at what is happening. Having to do everything, watching him make precious little effort for anything - not showering for weeks on end, not taking the exercise he has been told to do to help prevent muscle wastage. And I carry on working and will have to use all my annual leave for his medical appointments as he's not allowed to drive and needs me there to make sense of what is being said. (and to make sure he tells the truth).

It's grim, it really is. And its all a choice he is making. And there is no thanks for anything I am doing. I am just treading water until I can find an exit route and he will have to cope alone. That's where I am at.

lstitch profile image
lstitch in reply to RustyTractor

I think you have just described my situation

drittz78 profile image
drittz78

This might sound harsh. If you don't take responsibility for your own health then you shouldn't expect others to do it for you. I had Fibrosis F3 through weight so was lucky it was caught early. I've made drastic changes to sort it. I think it's selfish to not make changes when you have the chance. I hope it works out ok for you. If he doesn't want to help himself then look after yourself.

Oldbits profile image
Oldbits

I feel for you and fully understand how you feel. Only he can make things change and you should never feel guilty about your feelings. It is mourning for what you have lost and what you had planned.

I have been in a similar situation bottles hidden about the house for 30 years plus. Last year I had to report him as a missing person, he disappeared during the night. He had been turned down for a transplant because of alcohol, lost the plot completely. Found 150 miles away where he had been caught drink driving, he had his licence taken, fined and tagged for 3 months. I went to court with him and the magistrate thanked me for being there as most wives partners dont bother. We stay because we love the person they were before alcohol became their best friend. We are now 9 months on since the court case, the penny dropped and he has stopped the drink now for 4 months. His behaviour improved and confusion now gone. There is hope but it's hard work. Good luck, you are not alone. X

MisterX profile image
MisterX

Very sorry to hear this news. Obviously it's awful for him and you and the rest of the family and of course it's not made easier to bear knowing it was self-inflicted and avoidable.

If it helps - it's says much for you that you posted this. Often people in your situation don't and it's clear from your post that you're a very strong, capable, person.

You don't need me to tell you what you're feeling is entirely reasonable. Your husband never had any right to inflict this on you.

At the margins it might help just enough to remember that the power of the addiction to alcohol would have made it impossible for your husband to look at what he was doing rationally - even if he'd wanted to. The real person was the kind, funny person you married. He just unfortunately happened to have an illness - namely alcoholism - and he succumbed. The alcoholism and the person are two separate things even if it's hard to see that at times.

Obviously insofar as it helps to remember that it can only really help at the margins - but that may be enough to get through what's to come.

I wish you the best. You should lean on everyone you need to to get through this - including here.

Just in case it helps - when I'm occasionally in danger of ruminating too much on the past I'm often reminded of an old George Harrison song called Flying Hour. It has the words...

"The past it is gone

The future may not be at all

The present............ improve the flying hour"

.... which I find a helpful reminder to make the best of now.

Very best wishes. Stay strong.

Blossom0410 profile image
Blossom0410

Oh my word.... I feel exactly the same :( My hubby is the same and was very very ill but now is coming through it now a bit. Ascites and hernia seems to have disappeared.. a lot of medication every day & obviously NO MORE BOOZE!! which I'm please for him as its been two months now free and he says he has no desire to ever want a drink again! But the HE is so hard & he obviously doesn't get it at all & how sad it is for me to see him like this, he can hardly talk much & mainly in bed! I do everything.. I'm so so tired and miss the person I married soooo much, I sob myself to sleep most nights as sleep in separate rooms now also, so really I do just feel like a career but like you I cant & wont walk away, but we need a life too xx Please take care of yourself xx

lstitch profile image
lstitch in reply to Blossom0410

Thank you. What you have said is exactly how I feel. I am so tired as well and that only serves to make things a whole lot worse.My husband used to be an IT consultant. Now he can’t use a phone. Everything he says is complete nonsense and it’s so frustrating

Dogbot profile image
Dogbot

Hi Istitch the first thing I would like to say is what Richard wrote was a very good insight to the problem and I would like to thank him for writing it 👍. All I can add is that H.E is for the person that has it is it’s very real, I had H.E but was lucky enough to be in Kings College Hospital so when I told my wife , with all the good your doing me you might as well go home (this is after my lovely wife came to kings every single day I was in ,3 months with an hour and half journey to make)she did🤣, but unbeknown to me she spoke to the nurses and they explained what was happening to me. It took me two days after that for my wife to say what’s wrong, then I told her I had shot an old lady dead and I was being kidnapped 🙈🤷🏻‍♂️. It took a lot of talking about it to reassure me there was no ladies on the mens ward and no one was going to pay a ransom to get me back 😂. So I do feel for you and your family for the drinking and the confusion, I’m now nearly 19 years dry with my lovely wife waiting for a transplant we are very happy 😃. Our thought’s and good wishes go out to you and your family 💕💕💕.Stay Safe All

Dogbot 🐶🌈Dave

Dogbot profile image
Dogbot

PS. I hope your therapy went well 👍.

Positive001 profile image
Positive001

I understand you completely having been through it with my husband. Not only is it hard looking after a very sick man but living with an addict makes it even harder. I admire you for staying with him, just make sure you make a life for yourself with hobbies and socialise away from home. I know all the crap will still be there when you return but time away is vital.

Take care.

Laura

lstitch profile image
lstitch in reply to Positive001

I worry when I leave the house. I don’t know what havoc Is going to happen

Positive001 profile image
Positive001 in reply to lstitch

If that's what worries you, that's when family members should step in so you have some time to yourself x

BritishLiverTrust5 profile image
BritishLiverTrust5ModeratorBritish Liver Trust

Dear Istitch

If you are in the UK and would find it useful to talk things over, our nurse led helpline is open Monday to Friday 10am to 3pm on 0800 652 7330. You will be able to talk over your situation with a qualified liver specialist nurse who may also have knowledge about accessing other support in your area.

I have attached a link below to the British Liver Trust website which you may find helpful. This is the main page for Alcohol Related Liver Disease and includes many links to other helpful resources.

britishlivertrust.org.uk/in...

You may also find the booklets available in the "Cirrhosis and Advanced Liver Disease" section of the downloadable publications page helpful when caring for someone with advanced liver disease. This page can be found here:

britishlivertrust.org.uk/in...

I hope this helps in some way.

Best wishes

BritishLiverTrust5

lstitch profile image
lstitch in reply to BritishLiverTrust5

Thank you. I have already spoken to someone on the helpline. It was very useful

Spooks58 profile image
Spooks58

I'm so sorry as I know exactly how you feel but there are some really helpful posts here. Sometimes it does feel like existing not living but if you get an occasional glimpse of them the way they used to be it's worth it. Take care and definitely make time for yourself, it's the only way to stay sane xx

pushthrough profile image
pushthrough

I’m so sorry to hear about what you are going through. I know my wife isn’t very happy with me even though we get along very well and I’m in the early stages. I honestly can’t blame her. If I get bad I think I would just rather her leave me and live a happy life. I didn’t even drink alcohol as much as many but it was too much for me I guess. I’m 39 btw and our 10 year anniversary is one the month after my next hcc follow up. I feel terrible for her but do my best to be my usual funny self. I just pray I can live a rather normal life but sometimes I feel like there is a time bomb inside my body.

Banshee1968 profile image
Banshee1968

I keep telling my partner (34) years together, that I won’t be nursing him when he gets ill. He was diagnosed with cirrhosis last year but refuses to stop binge drinking at weekends , high holidays, sports events, summer beer gardens etc. Total denial.

bcsurfer profile image
bcsurfer in reply to Banshee1968

Hi

Oh geez! I feel for you, I really do. I know you've told him you wont nurse him when he gets ill........but now might be a good time for him to realise his ALREADY ILL !!!

I have been in a hospital ward with men who behave like this. Its actually a condition beyond denial perhaps best called Selfish Stupidity.

The ones that were dying all thought they could cheat death. That their bodies were somehow those from a Marvel Comic and could survive anything. In their final days with all opportunities lost they just lay wishing they had behaved differently.

Recovery and a good life ARE POSSIBLE. I am living proof! I am fit, strong, healthy, in the gym and running with my dog!

You are clearly going through too much already but you might like to add to his consideration that not only is his behaviour shortening his life to what may at best be a couple of years, but he is writing himself off any hope of a transplant.

Transplants only go to those who have proven they have stopped drinking and pass all the tests required to ensure the donor organ hasn't just gone to someone who is going to keep abusing alcohol.

The choices are his to make for his future, but so too do you have choices to make for yours. Don't waste your life too if he won't respect your right to happiness.

Good luck and be strong.

bcsurfer profile image
bcsurfer

Hi

I hope I can contribute something helpful, but I can only draw on personal experience .

What I do not have is the benefit of having met your husband and just as importantly, yourself. I do not know the nature of your husbands alcohol consumption in terms of volume, personality change, lifestyle, relationship with and without alcohol bet ween you as a couple, and him as a Father and of course the financial impact.

What I do know, is that real love is entitled to express itself through anger and frustration. Maybe in a quiet moment you might reflect on your true feelings for the man you married and the man he has become. Within the latter I can pretty much guarantee you that the former man is still very much there, and needing to come out. If he is cognisant with his addiction, he will be cognisant with the need to return to the man he was when you fell in love and went on your journey together.

I work in the creative sector and alcohol was as normal as breathing. I was fully functioning, productive and mostly good fun. That's how I saw myself. Functioning and productive I was, but functioning as a partner in a relationship I of course couldn't be. It's no more a possibility than winning the 100 metres race with your legs tied together.

In my case I threw myself into recovery with massive amounts of positive energy. I haven't broken a single rule. Not one. I have been passionate about recovery and now my high is life! Life is the biggest drug there is and it is amazing.

But I did it for ME first, and my family second. That may seem selfish but your husband has to want to change, see where he has failed and step up and do the right thing for himself. Doing it just for you and his sons is not enough. You can be a motivational reason that adds to his goal but he has to be Number one. We are all fundamentally selfish and in this case he needs to draw on that. Replace possible defeat and self loathing with hope and determination for great changes.

If you love him and I'm sure you do, you will support him and in return, you will get your wonderful funny husband and father back.

As for the Umbilical Hernia. A separate matter. I have just had surgery for this after 2 years waiting, not just because of covid. Your consultant will give you various reasons for not doing this immediately. The main reason is that if your husbands liver is badly damaged the Anaesthetist will not touch him with e a Barge Pole. His liver runs a high risk of not handling the anaesthetic and could cause even more irreversible damage, or worse in High Dependency.

My commitment has seen me become super healthy and my liver functioning incredibly well. In fact, as normal. It has largely repaired itself. This hard work and commitment got me on the operating table.

My surgeon and anaesthetist had planned special anaesthetic less likely to be risky to a liver patient and scheduled me for 4 days in hospital for observation and recovery. Under normal circumstances an Umbilical Hernia is a day patient case.

My surgery went to plan and I was in such good shape, the surgeon had me signed off for discharge the next morning! I have not had any issues after surgery and with the Hernia now repaired I have head back to the Gym and running with my dog.

Your husband has the potential to achieve all of this. See if his will is there, and if it is then I would encourage you and your boys to support him. If he is in denial or falters you will see the signs early on. That's when tough decisions have to be made. I've seen too many patients beside me in denial, back in hospital for a 2nd or 3rd time burdening their families and full of excuses. If that happens I would say to you to move on. Your life is yours and you only share it with him, moving forwards if you are going to be happy. You are entitled to a life filled with happiness. Don't sacrifice it if he wont respect your right to it.

I really wish so much for you to get the best and most amazing outcome possible.

lstitch profile image
lstitch

Those are very kind and thoughtful words

You may also like...

Advanced Fibrosis/Early cirrhosis

all came back negative but my Fibroscan surprised him! I have had non alcoholic fatty liver for...

Early morning constitutional

Diagnosing early cirrhosis / fibrosis / ALD

In July, I also had a CT scan, ultrasound and upper colonoscepy done in hospital, which were all...

Early symptoms

and I've been really fatigued ever since. I've also started getting a vague ache around where my...

I'm 37 and drink about half a bottle of wine a day with perhaps one night off a week. I drank a mixture in my early 20's.

I worry because I know that I'm drinking in excess of the recommended limit. My parents were / are...