I was just wondering what support there is for loved ones of someone who has Decompensated Alcoholic Cirrhosis.. My husband is desperate ill after being in hospital for 3 weeks and nearly dying due to bleeding. and so on, Now he's home he's in bed all day while I have to look after him with medication, making sure he's eating well, whiles working from home, and trying to look after myself, I'm trying to be strong for him but inside I'm broken and shattered and feel so alone. Feels like I don't mater as when ever I try to speak to his healthcare practitioners or councillors I always get "We can`t discuses that with you as your husband hasn't given consent"!!??? But I'm ok to take it all on after the hospital discharged him and I was just given a massive bag of all his medication to sort out, read up on them all so I know what's what, make sure he takes it all on time, healthy food 3 times a day, try to make him get out of bed and walk, plus hoping and making sure he stays away from alcohol as it will kill him if he touches it again xx
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Blossom0410
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I really do feel for you. My partner isn't as ill as your husband but he has cirrhosis and still just about works but only a couple of days a week and sleeps the majority of the time when not working leaving me to do everything around the house, work full time from home and look after 2 children. If he goes for an appointment at the hospital i don't get a full picture, limited info if he remembers any of it. I do ring the hospital but get the same response as you ( they are not allowed to discuss anything with me as). He still drinks as well so is not helping himself at all. I also feel alone as i dont have him to talk to anymore as he's a completely different person now (because of the drink!).
Welcome to the group. I understand how hard things must be for you right now. Try and be strong, hopefully, you’ll find lots of help and support here.
I noticed on your profile that you mentioned Lactulose under health interests. Would I be right in assuming that your husband is suffering from HE (hepatic encephalopathy)? If this is the case, then I can totally understand your frustrations, feeling of hopelessness, and unappreciated.
Last Tuesday I was down at the Royal Free hospital in London talking with some patients and their partners talking about their liver disease journey. Listening to these people share their stories and experiences highlighted just how caring and understanding people like you really are.
Liver Disease (especially alcohol-related) can often be a marriage breaker. Volatile outbursts from someone with HE can be both frightening and hurtful. Those families with young children may feel that this is all too much. I have over the years seen several marriages fold under the pressure. “I never signed up for this, I’m off”. But then others stay and care for their partner/husband/wife. They put up with all the outbursts and tolerate the bad tempers. These people, people like yourself are truly the unsung heroes of liver disease.
You stand by offering care, understanding and support. That love speaks volumes, So you should be proud of yourself.
Some years ago, I started to try and set up a local community support group which was called “The LiverLife Café”. (this is a play on words for, “Live a life”). The idea was to hold meetings where people with liver disease could go and meet with other people and share their stories and experiences over a cup of coffee. Not only that, but it would be open to family members and careers alike.
Being a local run venture, it could open other avenues of support including bereavement counselling, and child support through NACOA (confidential advice and support for children of alcohol-dependent parents): nacoa.org.uk/
Sadly Covid raised its ugly head and the whole venture was scrapped.
Why not channel some of your energies into starting up your own local support group? This would give you a sense of purpose and give you something else to focus on while helping your husband and others in the process.
Start small, say just a few coffee mornings and see how it goes.
Once again, I salute you for being a real, modern-day hero.
Thank you Richard for your kind, kind words... Sat here sobbing when I read your reply and all the others I've had received It truly means a lot🥰 Also seeing there are others in the same boat and how much people care and of course I'm not the only one going through this head spinning situation & nor am I the one suffering with the symptoms of this horrible dieses.
Yes my Husband has Grade 3 (HE). Its funny as I was the one who said about it to his consultant early on in the year that I think he may have (HE) ? "Oh yes you may be right" was the response back from him (Who's the consultant here?!!) I have had to do a lot of reading up about liver conditions and this was a word mentioned a lot!! I think I first noticed it in him when he would get our post code wrong when giving it out or keep asking me the questions through out the day, Obviously when he was in hospital a few weeks ago I got called in to try and calm him down as he was completely "bat shit crazy" no doubt that was mainly the medically given detox regime where all the toxins had hit him big time! (would this of also made the HE worse long term? )
He also has very bad Ascites which last draining was just over 2.5lts, its now building again.. is this a forever thing also!
Its a shame your community support group couldn't kick off, its a good idea..
Well we will keep plodding on as everyday is different..
I would say all the marvellous doctors & nurses who looked after my husband and prevented him from dying are the real hero's, I hope he can continue to see what has been done to keep him here and not go near the evil drink again (that's another battle to battle when it comes out again)
I think that’s a fantastic idea Richard. Have you thought of doing it on zoom or such other fandangled technology and folks can bring their own cuppa?🙂
Hi Blossom, welcome to the forum, hopefully you'll find us a warm, welcoming and supportive bunch. 10 years ago this month I was in a similar postition to yourself - my fiance as he was then was rushed into hospital after a massive variceal bleed which came completely out of the blue and I nearly lost him - his liver disease isn't alcohol related (life long t-total) but auto immune so we never in a million years expected a diagnosis of decompensated cirrhosis.
He spent 3 weeks in hospital including a stint in High Dependency on multiple drips and transfusions.
I was lost but found the BLT website and eventually the forum a great help and i've been here ever since.
It's important as your hubby gradually gets a bit better that he does get out of bed and get active as his muscles will waste away. My hubby set himself the goal of going for a short walk in our village on his release from hospital and he gradually built it up.
Rather than 3 large meals a day the normal advise for liver patients is to snack - eat little and often avoiding any large 'fasting' periods. Low salt (to avoid fluid build up), less processed rubbish but plenty carbs and protein. (If hubby hasn't seen one then ask about referral to a dietician so they can give individual advice based on hubbies stage of liver illness etc.).
Obviously it's essential that your hubby remains off the booze or he will inevitably get more poorly. He is compliant with this as you don't want to be having to battle him? Has he 'seen the light'? after his spell in hospital or is he one of these who remains in denial?
The Al-Anon charity provides support to the loved ones of those with an poor relationship with alcohol. al-anonuk.org.uk/
If you have a good relationship then you need to be a TEAM going forward, you NEED to attend all his appointments and have access to what he is being told. My hubby has a diagnosis of mild Hepatic Encephalopathy as a result of his cirrhosis and he just wouldn't cope going to appointments unsupported. His doctors include me in discussion fully though they still need his approval for this to be the case - you and he can fill in forms to enable you to act on his behalf too.
My hubby is now 10 years down the line, he was having banding of varices regularly until 2014 when he was assessed for and listed for transplant but as he improved it took him out of criteria for t/p. He got more stable and has increased his walking from that initial donder round the village to 4 to 16 miles a day plus in September took up cycling and regularly now tots up 20+ miles days bike riding. SO, a cirrhosis diagnosis isn't the end of the world but the patient does need to put in the effort to eat healthy/properly, comply with all medical regimes and push themselves a bit.
For some years my hubby required daily bed rest and I was having to waken him for meals - these days have become less frequent but still happen once in a while. Chronic fatigue is still my hubbies main symptom and he is unable to work BUT he lives every good day to the fullest.
We've certainly been the journey along the way, fighting for benefits, more side effects of cirrhosis, hospital procedures, dealing with missing appointments, transplant listing and more.
If you've any specific queries as you go along then just ask. No question is a silly one.
I just hope your hubby is compliant with alcohol abstinence and you can work together on this, whilst you have now become a carer as well as his wife you must still look after yourself and try to live your life too.
Hi there,I am in a very similar position to yourself, my husband also has decompensated cirrhosis and is very poorly.
I work full time, much to his disgust, and I’m not prepared to give my job up, I’ve worked extremely hard and a month away from completing my level 3 health and social care, I have taken on everything, from keeping the house running, making sure bills etc are paid, and making sure he attends all appointments, I drive him, and attend with him. I also deal with his liver team and nurses, he has episodes of HE not pleasant, can come across as aggressive and very moody, his memory is absolutely awful. I order and pot his meds for him.
He was declined for transplant due to underlying health issues and I felt like my world had ended last November.
I found talking to my friends and colleagues at work very helpful and they really are very supportive.
This forum is absolutely fantastic, don’t ever think you are alone. I totally understand your feelings.
I have very difficult, frustrating days, but we get through them.
Remember in all of this to take care of you also. You are important too.
Hi thereI hope you dont mind me responding to your post as I feel that I am in the same boat as you. My husband has decompensated liver cirrhosis and we have been in and out of hospital, he nearly died a few times and was put on end of life care about a month ago, he has improved slightly BUT he is now being discharged home after a 5 week stay in hospital due to being drained of fluid and even though he did come home for nearly 3 weeks, I too work full time and not prepared to give my job us to care for him (even if this sounds horrible), how do you cope, do you have carers coming in etc...
Hi KayAnne,You’re not been horrible, we have lives too, and I love my job, it’s a welcome distraction too.
I have my daughter and two sons at home also, we all work but our shifts sometimes overlap each other, so we all chip in, and pull together, although I do the majority as they are only young and deserve a life too.
I pot his morning meds before I leave for work, ensure he has food and drink, make sure he has a phone on the table, he has a lifelink, so if he is unwell or falls over he can press the button and they will contact myself and send an emergency responder. He sleeps a lot during the day, before he had the lifelink I was really worried about him falling but I now have some piece of mind.
I cook most evenings, and do his medication before bed.
Days off are usually spent doing shopping, cleaning, laundry, the usual housework stuff and attending appointments with him. I also use some of my holiday from work to book in appointments.
It can be very hard and it’s very tiring, I get up at 6 in the morning and such as tonight I don’t sit down until 7/8pm, have an hour doing what I want then I’m off to bed.
I did look into getting a carer for him but it would have been too costly, and no point when he sleeps most of the day.
We see his consultant next week, he is quite swollen at the moment, legs, feet and tummy so hoping they can start him on diuretics.
Take care x Remember to take some time out for you too x You are important too x
Thank you. We have no family near by to help sadly so it’s only me and hubby and my 21 year old that works full time also. We waiting to see what care package they will provide when he is discharged but he gets so confused and not very stable on his feet it’s just such a worry for me while at work. I never thought things were going to be like this, I feel that I’m going to mentally not cope anymore.
I completely understand, it’s a very stressful, worrying time.If needs be, dig your heels in and say he can’t come home until there is a care package in place as you simply won’t be able to cope and you struggle with your mental health.
Also look into lifelink, lifeline, they maybe able to provide something, they also have bracelets etc that can sense when a person has fallen and they can then send an emergency responder or contact yourself.
We have a key box outside with a code on it, so they can gain entry into the house if needed.
Hey there! You're not alone, there's lots like you on here, caring for your loved one with decompensated liver disease. Each case is slightly different but we're all thrown into the same boat and paddling bravely along!!My husband fights his illness, and is quite stable atm, so I have to be like an undercover carer - not letting him realise all the stuff I end up doing etc. I've had to learn little ways to make him slow down, otherwise he burns out and crashes badly. I'm thankful he hasn't lost his fight, but it can be exhausting sometimes.
You need to class yourself as a carer, and make sure your GP registers you as a carer too.
Look after yourself too, you need to count that as important to you every day, as your partners daily meds are to him.
I often feel quite isolated - liver disease is such a poorly understood illness. People are afraid of it and I think it makes folks feel uncomfortable sometimes too, if they have led unhealthy lifestyles. I feel like if my husband had been diagnosed with cancer, not cirrhosis, folks would have been turning up at my door with cakes and sympathy........
But please know you are supported on here, folks do understand on here, and it helps knowing you aren't the only ones. Often posts by other carers help me to feel more thankful of my situation too!!
will your husband not get it added to the hospital notes that they can talk to you? also do you have power of attorneys in place so that they can speak to you we recently updated ours so that can happen you can do i yourself online or through a solicitor
I was going to suggest the same thing. My mum wrote a letter to the GP and hospital giving permission for them to speak to me and my brother about her. It made things so much better. Actually I typed it but she signed it then I dropped it in at the doctors.
Power of attorney is also a good idea. You can do it online at gov.uk. There are 2 types, one for finance and one for health and care.
Good luck! You are a strong and compassionate woman - you can do this! We’re all here for you.
Our GP has a carers mandate form that you can complete to be able to communicate with doctors on hubbies behalf - all of this obviously dependent on him actually looking for you to support him in that way.
It's typical that an alcoholic will instruct the Dr's not to discuss their details with their relatives.His first "treatment" is no alcohol and if he refuses its probably palative care or patch up and discharge untill it kills him.
Tell him to allow you to talk with his Dr or he risks having to go back into hospital if you can't cope.
Hello everyone, I've just joined tonight and I felt like I was just reading about my own story. We were told just before Christmas that my hubby has decompensated cirrhosis from alcoholism and even though I knew that one day we would reach this point I am really struggling to come to terms with it and don't have a clue how I can look after him properly, the way he deserves. I'm totally devastated but trying to be strong and that's not working out very well at the moment. He spends most of his day falling in and out of sleep, his ankles and feet are so swollen at the moment because he's damaged his back and he's in incredible pain. His gp has been less than helpful to help him manage the pain and said there's nothing more they can do. He also has a long stricture in his oesophagus so if he does have a varices bleed there's very little they said they can do. He has practically no appetite and then it needs careful consideration because he can't swallow properly. He's got dry patches on his skin from malnutrition. I just feel completely useless and don't know how to get practical help and advice.
Yes I was where you probably are in Jan this year, I know it a minor part of it but the dry skin everywhere and the constant itching where they cant sleep & hence turning to drink to sleep didn't help, up all night itching & drinking, bed all day & repeat.. No life for us ay?
Since his stay in hospital for 3 weeks & now home with a cocktail of many different pills (21 a day) including the alcohol suppressant pill he has been dry now for 3 weeks
👍 his skin seems better, still a bit itchy and have many creams for that and the nutritious shakes (Fortsip) legs are as normal again, just the very large stomach of the fluid which I think now forever will need hospital draining..Is you're hubby on any medication or the alcohol pills? (I hope so) x x
It rubbish being on the other end of all this, but I'm finding this site so friendly & helpful so ask away & we can all give our help and support xxx
Look after yourself also please (its important) xx
Blossom0410 thank you so much for your kind words of support. Its good to know we're not alone. Hubby's been going downhill the last couple of weeks as he's still unable to move due to his back. Gp keeps referring him back to physio. It's making me so angry that they're not looking at the impact this is having on his swollen legs and feet. He's also been getting very disorientated. Yes he's on lots of meds, beta blocker, lactulose, anti sickness, omeprazole etc. We've had a letter from the liver consultant who is really great offering a drain if this is causing discomfort. But my husband has heard its really painful and I don't think he can take any more pain right now..
Sorry to hear of his discomfort.. we are also awaiting for a bed on the Gastro ward for his drain to be done.. its been a week gone already, so hopefully this week coming as his weight/fluid is becoming unbearable.. he looks like he's going to pop any moment!! My husband has had 4 drains since having this condition, he says its not too painful and such a relive once done, the only thing is they have to be super careful not to cause any infections so give drip antibiotics straight away. I guess your hubby is sick and tired of all this and the pains from everything else, mine has now been in bed for two days as says he just sees no reason to want to get up!! I get it but not really fair on me, but hay-ho I will continue going up and down with pills & food, look after the house, our puppy, do the shopping, and work, I even mowed the lawn yesterday! that's supposed to be the his job lol😆.
Love to you both and tell your hubby he must have a drain if offered one.. xx
Thanks for that reassurance about the drains, I will tell him 🤗. Yes I know what you mean about trying to juglle everything. Our house and garden needs a team of professionals to sort it out lol. I think I just need to get into a new routine. He's got hardly any appetite, but I've started putting some small meals in front of him. Even if he just has a few spoonfuls it's better than nothing hey? Love to you three too (I wanted to get a dog but hubby said no lol) xxx
No problems at all..😘 With regards to food is he having the Fortisips nourishment shakes ? they range from 2000kal to 300kal per little bottle.. he is on the 300kal ones now 3x a day, eats fresh fruit salads like anything.. I'm sick of chopping up fruit lol.. small sandwich at lunch but not really a dinner person just more fruit & yogurts.. which is better than nothing I guess.xxx
hello, you are not on your own. Sending hugs. My partner was diagnosed 22.12.21 with alcoholic decompensated cirrhosis after having symptoms for about 2 months, very yellow, fluid in stomach. He was very poorly and underwent a medical detox in hospital where he remained for 3 weeks - then readmitted a couple of weeks after discharge for low sodium. I found out he had cirrhosis on Christmas Day on the ward where I sat by his bed and sobbed whilst all around staff where dressed up in Santa hats and singing, our 15 year old daughter was at home alone on Christmas morning while I spent an hour at his bedside. The doctor who told me his diagnosis just told me he had end stage decompensated cirrhosis and then walked off - it is only since then we have been told by other doctors that decompensated can return to compensated over time with good diet and no alcohol. We are hoping with everything we have that this happens at some point in the future.
Since then his bloods are slowly improving - but his has awful edema and fluid in stomach because he couldn't take diuretics due to low sodium. His sodium has just returned to normal levels so we are hoping he can re start them at his next drain (every 3 weeks - draining 12ltrs a time).
I have a full time job, a daughter doing GCSEs, a year old Labrador and I am just about holding it together whilst trying to get him to eat as much protein as I can and obsessing about everything. Thankfully he gave permission for me to be point of contact so I talk to the doctors and basically advocate for him, chase for blood results and so on.
Whilst I wouldn't wish this on anyone it is good to know I am not alone xx
Indeed it is a s*i* situation to be in but some comfort to know were not alone I guess
😞 Yes I was basically called in when he was in hospital in the 1st week to expect the worse as was very very poorly and other organs could start shutting down! And yes as you say then another consultant said, 'Ohhhh nooo nothing like that' he will be fine.. WTF 🤯 they cant mess with our heads like this. Also my husband gets so frustrated with the different advice and hence this is what makes him then go and possibly hit the bottle again like it did last year. Every day is a roller-coaster, I hope you and your family are doing ok and all a bit brighter xx
So feel for you, my hubby been decompent since may 2020 the last year been very poorly, I have cared for him our liver doc has been amazing, we have had all face time face app and he has told me all I needed to know and expect, sadly hubby passed away at home 2 weeks ago, we had district nurses and palative care on board who were also amazing and told me everything I needed to know, think you would be better knowing at where your hubby is with this awful disease and get the backup that you need,ask for help x
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A little bit of advice 
Advice needed ascetis
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Cirrhosis and disability. 
