Any carers out there that can give adv... - British Liver Trust
Any carers out there that can give advice on managing HE at home ???? Husband keeps wandering and refusing enemas/meds !!!!!
Sorry to hear what you are going through. I have been there. The only thing I can say is that once my husband reached the stage of sleeping all the time it was easier to cope. It sounds awful but going through what you are at the moment that is the only time you will get some piece. Is he on the transplant list?. Is there no way you can disguise his meds in food or drink?. What meds is he on?.Whereabouts are you and what hospital is he under, and what do they advice?
Carmick
The last time my partner had a HE attack, he of course said he felt fine but I knew something was wrong. Ended up calling the ambulance and they persuaded him to go in. He ended up in for 10 days, totally dehydrated and completely confused and agitated. It was horrid as he hated me for putting him back in hospital until he got his brain back together again. He had been given codiene for back pain from a previous fall and I was trying to wean him off it but it completely bunged him up, hence getting the HE. I think this is one of the worst side effects of the cirrosis and hard to deal with. Now he is off the codiene, lucid, moving bowels regularly and back to his normal self. It is a constant worry though.
As a HE that needs care its difficult, I know that when I get confused or ill I don't really want help as at that point I believe I can get myself sorted, add to the situation these days while I stay better a lot longer my emotions are all over the place and my wife the carer gets fed up of me being the attention when she is struggling herself.
When I am really ill I will then laydown and do as I am told and the longer the illness has gone on I accept that I must do as I am told when 'ill' as I am really out of control i.e. I cannot even get my shirt on. But when I am ok I am ok so please let me get on as not being able to go on holiday and the feeling of uselessness really start to get to me.
No real answers sorry, but I am hoping a badly written explanation from HE and how it feels and I really appreciate how very hard it is for a carer and thank all of them everywhere. I guess sat here thinking we have found a point that I now accept that I must give up trying and get sorted, and if I don't take my meds I get a lot less of the good times so take them without fail, the only thing that winds me up is when I get ill and I have done what I am supposed to, be told I must have done it wrong!
But again me me me my wife must be well fed up as well!!!!
Dear Robs wife - my heart really goes out to you as I have been there too. The medical experts just don't realise the toll on the carers trying to cope with all the symptoms of this horrible disease; particularly the depression and change of personality in the sufferer, & the massively disrupted sleep patterns, as well as the crazy actions of someone having an HE episode. The lactulose seems to be the only thing that really works so the suggestion to disguise that is a good one if you can. Also when my husband was having a minor HE attack, i.e. as opposed to being comatose and needing the ambulance we did bring him back to relative normality by persuading him to do a repetitive task and drinking plenty of water. And a bit of massage. (yes lots of attention needed). In his case the repetitive task was because he was diabetic and had to take his blood sugar - it took him 2 hours & about 30 needles. Maybe your Rob could sort some socks? I also think you should consider taking him to hospital for his own safety, at least ring NHS direct and talk through the symptoms and/or your GP. Although when my husband did have a lively HE attack as you describe the hospital did have to restrain him in bed which is extremely upsetting and even so he still hurt himself quite badly. Also call any friends and family who are close to you for moral support if not practical help. Also as Carmik says push to get him on the transplant list. HE is a bad sign. My husband was too late & died in June. Very best wishes and good luck x
Thanks all for your replies xxxxx Yes - Rob is on list (blood grp B so est 18-24 month wait) !!!!!!
He has been admitted 5 times this year for HE episodes and had 2 respiratory arrests (while in hospital) - I am reg nurse and I still can't get my head around - nothing can be done ???? He takes lactulose and Rifaxamin (when he agrees) and has high enemas (daily if he lets me) - he just goes off for wanders and won't say where he is going - he tells me he has had insulin ???? I don't know if he has or not - apart from sitting with him 24/7 I would never know !!!!! I go to sleep at around 4am when I know he has gone to sleep (so I know he hasn't escaped) luckily I have an older son aged 22 - and he supervises quite a lot - it's the aggression I can't handle !!!! After his last hospital admission they had a meeting with us and basically said they can't do anything for him !!!!! So they wanted to try and reduce the amount of times he was being admitted !!!!!! Asking me to give the enemas etc (which is better than taking him to hospital every day for them) - he is only 47 and has not touched alcohol since 22 - his is HCV cirrhosis and was not diagnosed until it was too late 
- hiding stuff in food won't work because he refuses to eat and same with blood sugars - he tells me he has done them and to f**k off - and if I attempt to do them he will push me away so I don't bother anymore !!!!!! Just can't see how we are expected to deal with this for maybe the next year or so ???????
Hi there. My husband is in hospital at the moment - and they tell me that he is ready to come home because there is nothing that they can do for him in hospital. To date we haven't needed care at home as he has always been able, slowly, to do things for himself. But he went into hospital with little mobility and dehydrated and is coming home the same way. I am refusing to accept him back until I have the home from hospital carers or the community nurses coming. I work full time and am usually away by 8am and not back until 6pm. There is only me. I keep being told that he is a delayed discharge and is bed blocking but I keep telling them that he is not safe to be on his own and I can't just give up work. So I feel like I'm fighting and it's all very stressful and I'm so tired all the time and I worry that it will affect my work as I work with people with mental health problems. I'm relatively new to being a carer I have a lot to learn and sometimes it feels like a long way to go and on my own.
Hello
I had the same problem with my partner. I had to refuse him being discharged into my care until Social Services did something and put in some adaptations to the flat etc. He was hardly mobile and we have 4 flights of stairs to manage. They try and make you feel guilty but I work full time too, and am the only wage earner now. The carers centre were really helpful too, but not the hospital discharge team. They basically blamed me for him falling while I was on a holiday break and said I would feel guilty for the rest of my life. I have had depression and anxiety myself and you just have to say you can't cope and they have to listen. IT is horrible though. The last time they discharged him was after a horrid HE attack and I had to get the care package started all over again, it had made me ill so I wasn't on the ball as much. It is like a battle though. Good luck and I hope you get the support you need.
All the best
Dear Robs wife - is he going to west Middlesex hospital by any chance? I was supremely disappointed with the Gastro team there. Trying to cut back the amount of time you go in is exactly the sort of action they would take. Everyone said interaction with consultants would be better once we got to the actual Liver specialist centres like Kings and so on, have you been there yet? I can only also suggest asking for help via GP/social services on the basis that you are on the brink of a nervous breakdown and/or trying alternative medicine - if only to distract Rob, and you, even if it doesn't work. We couldn't do any acupuncture because Gerry was afraid of needles but we did use heat sticks or Moxar sticks so that might help if you - if you are in West London I can recommend the same person - or light therapy/sound therapy - just to try to distract his mood. I had exactly the same anger and lethargy from Gerry but he became quite docile once he got worse. How awful to be telling you it would be good if he got worse, I am so so sorry. Carers like you are who this charity should be helping, although what you need is a suitable medical carer who can give you a break and I don't think they actually exist in the system - with love xx
Thanks carer xxxx we live in Bournemouth but Rob has been to Kings for assessment and that's where transplant will be carried out (if we get to that) - your suggestions are very helpful but don't think rob will agree 
- all he says every day is why can't I drive my car ? Why can't I go to work ? And says its me stopping him from doing everything - he forgets he is ill and then when I remind him he gets cross and goes off on one again !!!!! Can't win - think hospitals think - if we can't make it better then we shall forget about it !!!!!
