Long story short - hubby has ARLD - he was given days to live beginning of March as he developed Hepatorenal syndrome twice and was sent home with End of life plan and Hospice, he stayed home with carers whilst I went to work (someone needs to pay the bills and put a roof over our heads), he was home for nearly 3 weeks but I could not handle it anymore, he was being stressed, more confused, falling over and thought 'this is the end', he was taken to a Hospice home and still there, they are planning to discharge him home next week.......
What do I do??? What can I expect other than the confusion, jaudince & generally looking after him?
We are trying to source a care package with the NHS through the hospital but the funding is so untasteful it doesnt help him ie carers for 2 mins four times a day......he needs more permanent care than this......
Has anyone been placed in a similar situation?
Thank you
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Kayanne1980
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Hi Kayanne. I have, except my husband never went into a hospice. All his many symptoms were kept under control with loads of medication and for 18 months he stayed with his mother as , like you, l needed to continue to work to keep the mortgage and bills paid and take care of my children. Living with the lies, deceit, craftiness, disappearing money and all the rest of the many major problems an addict creates is incredibly tough. It's hard enough living with a very ill partner but doubly so when they are addicted to the very substance which is causing that illness. Finally with the help of a 1 to 1 councellor he gave up drinking but it had taken it's toll. At this point l agreed to him coming home at weekends and l felt the man l used to know and love was emerging again. But following a major nosebleed l called 999 and he was rushed to hospital. After 2 days in HDU he was transferred to ICU. There it was confirmed he had liver failure, kidney failure then broncho pneumonia. He had tubes in and out of either side of his neck, was wired up to numerous machines and was having oxygen pumped into him equivalent to having your head out of a car window while travelling at 80pmh. After 10 days in ICU with no improvement, no possibility of a liver and kidney transplant due to him only being alcohol free for 3 months, l was gently told there was nothing more they could do for him and the kindest thing would be to top up his dire morphine and let him go. So l sat beside and held the hand of the man l no longer recognised, yellow from head to toe, hair like a brillo pad and looking 84 instead of the 54 years he was.
The nurse took off his oxygen mask telling him he had done really well and was going to lay him down to get some rest. With that he sat up, turned and gave a smile like l hadn't seen in years and laid his head on the pillow.
His nurse sat beside me with her arm around my waist as we watched his breaths and heartbeat fade away on the screen till all the lines ran flat.💔
That was 12 years ago now and our lives are now full and happy, l have remarried, l have 3 stepsons and 2 stepgrandaughters. My own children all grownup now too are thriving and happy dispite all the new rubbish going on in the world !
We remember their Father with much love and will always have a special place in our hearts.
I am so sorry you too are going through such a tough time, there are many on this forum also going through it. So please don't feel alone, we can help and support you as and when you need and want it.
Lots been going on this month... Hubby and l have had covid, Trying to keep on top of workload but having to pace myself ... the fatigue is unbelievable! Late husband's Mother died (91 !) on April 1st... funeral today. But l'm still here 🙂
WOW thank you very much for your message, its amazing to read! Right now, I have lost my husband, sounds horrible but I have lost him in the sense of I am not his wife, I am just someone that speaks to the Dr's, looks after him, brings him what he needs, its horrible, never thought this would happen to us. He obviously has not learnt yet as he is still drinking alcohol....maybe nowhere near what he used to but still having it everyday
I understand that. I would like to suggest reading my reply to him may make him sit up and decide to give up before he meets the same horrific fate. However l know from experience his response would be along the lines of ... " yeah but ..... he must have been drinking loads more than me! "
" Yeah but ..... that won't happen to me!"
There will always be the yeah buts and the excuses to carry on drinking .... the sun's shining, it's cold and dark,
Everton won, Everton lost, you're pregnant, we've had a baby, you've had a miscarriage....... anything and everything is a reason to drink. The damage to the liver and other organs is never a consideration !
Tough to read. Sorry you’re going through it at the moment. I can only give you my experience and hope it helps. About a year ago I was in a similar position to your husband. I had been admitted to hospital with a deep rooted infection and a liver which was giving up the ghost. I had no idea I had liver disease before the admission and was very sick by the time I got there. I’d drunk heavily for a long time, but lockdown had taken it to a whole new level. To cut a very long story short, by the time I was discharged about 5 weeks after admission, I was still pretty unwell. Medically I was fit but needed significant nursing support. I had a strong family network but they lived a long way away and I was left to rely on carers for most of my support. My family worked with the carer agency and between them they came up with a sustainable plan. My family moved in on a rota basis to start and the carers worked with them. Slowly my family withdrew and the carers took over. No feeling sorry for myself though, it was active rehab for me and they pushed me to do things rather than do it for me. Very quickly I was feeling a lot better. I was making progress. Eventually I was discharged from carer support, but carried on the rehab routine. No alcohol, a much better diet and exercise everyday soon had me walking a few miles, then I started running it and soon I was riding everyday as well. Roll forward a year and I’m fitter and healthier than I have been for years. Working. Abstinent and enjoying life. I still have cirrhosis but my bloods are now all normal and I feel well. I had to take responsibility rather than have it done for me which galvanised me into really turning things around. I could have given up...but very glad I didn’t. It’s surprising what a small package of care can do if it’s correctly targeted and outcome focused. I’ve no idea of your husbands clinical condition, obviously, but provided he keeps away from alcohol and keeps focused and positive, there’s no saying what his body may do.
Thank you - it seems that you have things more under control than what I did when he was home the last time on end of life. My husband is very ill but he seems to be looking better everyday, he struggles on his feet and cant walk without a walking frame. He is still drinking sadly, he used to drink 1lt of vodka a day now he has a two drinks a day, I know I know, he MUST STOP but he wont, its his pacifier and he knows he will die from this, its so hard to watch and know that there is nothing I can do for him right now, this is his battle to kick the bottle!
It didn’t feel under control at the time. I’m a very independent person and the loss of control terrified me. My family just took over at the start. The carers were amazing and tended to all my personal stuff...but the humiliation of being washed by a stranger put me off alcohol for life! He has to stop drinking, not just cut back. Sadly it’s the only way he’ll get better. Now I don’t drink, I can’t believe I drunk so much. I actually don’t miss it. If you’d told me that Dec 20 I’d have laughed and poured myself a glass of wine. It’s a leap of faith for him because he’s become so dependent on it. If he could just reach out for help....the alcohol support services are terrific.
Your story is very similar to mine. I didn't realise the harm I was doing till i really hit the bottle during lockdown 1 and went to hospital in June 2020 and stayed 3 weeks. I was very very poorly. It took me a long time to recover. I haven't touched alcohol since then and manage my cirrhosis through diet and exercise. I was 41 when diagnosed.
I don’t think I’ve ever been so scared in my life when I was admitted to hospital. I was incredibly unwell. I’m someone who’s worst health scare up until then was a bad dose of gastroenteritis! Alcohol is a dangerous, pervasive and socially acceptable substance which wreaks havoc with your liver and mind when it’s consumed too often and too heavily. Sadly, it took a scare like I had for me to stop. I realise now it had quietly slipped in and had been my go to when I was happy, sad, stressed, wanted to celebrate or socialise with friends. It was ubiquitous in my life. Fortunately, removing it hasn’t been that hard for me...but I appreciate it’s not always so easy. I had friends around on Friday night for dinner and I’d got alcohol in. My lack of consumption has had a positive effect on theirs and there’s still loads left over. I’m not sure if it’s embarrassment, empathy or it’s scared them too...but I can see they drink a lot less these days. The nice thing for me is that I can parcel the leftovers up in the garage and not consider drinking it....roll back a year or two and that wouldn’t have been the case. A switch has gone off in my head and the whole alcohol thing now triggers bad memories not pleasurable ones and I think that’s what’s made it easy to jettison. Whatever it is I’m very glad.
Yes im the same, whenever I think about my drinking days i just feel shame. Every health professional i come into contact with has congratulated me for giving up the drink but it was easy for me as i went through so much in hospital and was so ill i am so greatful for the NHS and what they did for me to ensure im still alive. I often still read about my cirrhosis and that scares me enough if i ever feel like a few drinks again. I feel empowered not drinking and its the best thing waking up in the morning liking myself instead of hating everything about myself and my life. Im very greatful x
You may benefit from giving our liver nurse helpline a call. The number is: 0800 652 7330 and is open from 10am-3pm Monday to Friday (except bank holidays).
Thank you every one that has replied. We will find out probably Tuesday what the deal is with hubby coming home - they have given my husband a 3 month prognosis but I am taking it with a pinch of salt as they said days two months ago! I just want him to be comfortable and safe as he means the world to me!😪
Hi Kayanne. I haven’t posted much on the forums but have had some excellent advice from folks on here (often just by reading other posts I’m ashamed to say) and at the British Liver Trust.
My mam was sent home on end of life care at the end of January, care twice a day, district nurse once a week and OT visits once a week. We were also given a pack of drugs (including morphine, anti sickness and a sedative to calm down if agitated), list of contacts etc. we ended up having to look after her in between visits and my working from home during it just stopped as I ended up spending more and more time looking after her at her house and staying there overnight too. The attention from the NHS and others when mam went onto end of life care was like a first class service, chalk and cheese to beforehand, and it was all funded by the NHS.
Towards the end of February she went into a coma, breathing with 25 seconds of no breath in between gasps and we were told by the GP this was it. All of her meds were stopped other than morphine for pain relief and She passed away about 4 weeks after that date but she regained consciousness and breathing and we had some lovely time together (she was bed bound) and were able to talk about all sorts of things, settling everything before the inevitable.
At that point when she went into a coma the GP and OT teams arranged for hospice at home to get involved and they stayed with her from 10pm to 7am so we could get some rest. It wasn’t every night but it helped. Her care was also changed to 4 times a day and fortunately we managed but it was tough I’m not going to lie.
I suppose after rambling what I’m saying is if your husband still needs the level of care as he’s getting in the hospice, then don’t let them discharge him into your care until the care plan is in place and resourced and you have all the contact numbers for district nursing, out of hours help and the OT. It’s the OT, district nurses and GP that can improve things once at home, in my experience anyways, and don’t be afraid to call them anytime. That’s the only way we made sure mam got the care she needed at home - we were occupying the precious 💍 - a bed!!.
It was tough not letting her come home from hospital while it was all sorted but we explained it to her and she accepted it. I won’t say in good grace though!!🙄 in the end we had to threaten the hospital, not nastily or angrily but firmly and we asked for the contact details of all involved and started ringing them to get things moving. Unfortunately COVID is used as an excuse with all of this but in my experience you have to push. Don’t sit and wait as it’s unlikely to happen or will happen at a snails pace.
I hope you manage to get sorted and good luck and the very best of wishes. xx
Hello there - thank you very much, I am so sorry to hear of your mums passing. When he was first admitted in February with failing liver and kidneys they arranged fast track care within 2 days and he was home, 2 carers 4 times a day, district nurse once a week (which was horrendous, this nurse allowed my husband to get up from his bed with confusion and open the door for her ALSO the carers posted the house key through the front door one day as opposed to the lock box) can you see why I am anxious about this?? He was home for nearly 3 weeks then he took really poorly, confusion, thinking he was at a different house etc, I could not take it anymore so I called hospice and the GP and they got him re-admitted, we were then told that he wont make another week, got the family round from Lyme and everywhere else but then he improved, they managed to drain the fluid from his abdomen about 7 litres and since then he has been stable, not anywhere near normal but better. Right now the fluid seems to be collecting again which is another worry but they want to discharge him home with the same care I am assuming which I am not very comfortable with.....as I wont be home as I have to work full time to pay the rent and keep things going......I will push them next week as I dont want his mental health suffering too in a place where people are dying in beds around him too. I said to him if they offer the same support at home like the last time, I want different carers at least as the two we had were awful! If things go South again I will have no other option but to get him re-admitted I cant let him suffer.....
I completely understand. It’s a tough situation. I have to say some of the carers we had were similar to what you describe. The Hospice at home carers we ended up with were fantastic though, proper caring carers, not in it for the money or under time pressures. I made a complaint against one of the carers due to her attitude. Things improved a bit after that.
Mam had HE, she tried to eat the remote and tried to drink her breakfast, but worst was when she didn’t know who we were or where she was. I likened the symptoms of HE to dementia at the time. She also had ascites and GI bleeding regularly. She would always get sorted with it in hospital but would be just as bad within the week but once on end of life you don’t have back up of the hospital.
Might also be worth talking through your concerns and anxieties with the Occ Therapist and asking for a new OT / GP assessment with yourselves before he comes home? They might be able to offer other assistance? Also see if they have a delirium team. Mam had a delirium nurse who explained it all and would answer a call if we had concerns.
How does he still get the drink? I’ve got someone at home with addiction at the moment and we’re doing a home style rehab. No car keys, no bank cards etc
I am sorry that everything is so bad for the both of you. I entered hospital April 2019. Not expected to make it as ARLD and all the other problems that accompany it were in full flow. Family were there for me and as it appeared I may live some months longer than expected after the nail biting first month, preparations to get me home were started. No one except proper qualified nurses and doctors can deal with things like HE, my family knew this and so the hospital were told quite clearly that there would be no one to care for me when discharged and that a full and complete care package would have to be ready to go the moment I arrived home. It took some time but it was done. Make the hospice aware…there is no one to care for him at home and any care package must carry with it, the full understanding that you are not part of the programme. If they cannot guarantee this, you are under no obligation to have him back. I am so sorry that you are in grief even though your husband is still alive.
Can I also say that, if he has no hope of recovery and his final days are going to be very sickly and rough, then allowing him a few drinks each day is not only showing kindness but it is also wise. The alcohol will at the very least afford him a little peace that no other drug can give him now.
Thank you so much. It’s a fight to get the care he needs. I’m pursuing the full care option and I won’t give up. His well-being is paramount to me. I’m seeing the consultant Tuesday to talk it through. I’ve “allowed” the alcohol why not… the Dr said damage is done he will never get back to the way he was and he doesn’t want to be dependent on anyone let alone his wife. He hasn’t given up he has accepted the diagnosis
Hi. Thank you for replying. If the consultant offers no way back, basically cutting off hope, I think having a drink or three is not something anyone would baulk at. On the other hand, if there is even the slightest chance of hope, surely your husband would want to grab and run with that. I’m think the former is what is happening though and that time is limited. Full time care is not only a wise thing, I believe, it is also a protection for you both. You get the space you need to live and he gets the care he needs while he’s alive. Win win. I’m so sorry that your days ahead are a little bleak at the moment, and I would love to have words of wisdom to share that could help you but unfortunately, there are none. Not in my locker anyway. I do hope you get what you both need. Please take care. David.
It’s with great sadness that my husband passed peacefully on June 29th. He put up a fight right till the end. Thank you for support. He passed at homeWith me by his side just as he wished
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