Im wondering if anyone else has experienced this with a loved one.
As yet again I'm literally in despair as my husband is having yet another episode of HE and he's disappeared from house in his old Army smock with his medication tonight I've rang him and he's talking nonsense about being somewhere but I genuinely believe he's in a dillusional state and hallucinating his way around outside goodness knows where.
id ring mental health crisis team like I have before but they send police and hell attack the police which will end in more heartache hes already got questioned by police after a previous now diagnosed HE episode but he's now gone completely mad this evening and i cant cope as there's no getting through to him he was fine when i rang from work earlier.
His HE episodes are getting more frequent and the hospital are trying everything to help him but he has so many comorbidities that they can't perform open surgery on him.
I work in a hospital 12 and half hour shifts and it's destroying my life my heart is broken but I just don't know what to do it comes on and I recognise it but by time I do there's no rationalising with him as he's too far gone mentally to see reason.
I've never seen anything like it he has a complete personality change and does things completely out of nature. I'm so broken I miss my husband so much but it's like I'm talking to a stranger these days and I don't know what to do anymore I can't cope at home the carers who come twice daily don't really do anything as he's seen as Mobile and Self Caring but he's not he's incapable of looking after himself when he's like this.
I don't know what to do anymore has anyone else experienced anything like this?
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DD75
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Not experienced this buy I couldn't read that and not respond. This sounds awful.
I know you're worried about ringing the police or the crisis team but he sounds like a danger to himself and others and without getting agencies involved neither of uou will get the help and support you need.
Can carers come in to support your husband while you're at work? Are there children in the house? Most importantly, who is supporting you through this? It sounds awful.
Thank you he came home this afternoon but still manic disappeared again this evening reappeared manic and and it's like walking on egg shells talking to him. He's wide awake it's complete insanity I have a feeling he'll leave again and to be honest I just want peace I don't have children but I have 2 cats and he's so uninterested in any of them which isn't like him I actually think he's finally gone insane. If I call mental health crisis team or police he'll hear me and dissappear before they get here it's a living nightmare. He's hydrating and eaten and he's on antibiotics rifaximin and lactulose I'm just hoping and praying that the HE episode ends its happened before and literally calmed down gradually after sleep.
That sounds at the very extreme end of behaviours associated with HE. We've seen similar sad stories on here before - people driving the wrong way down motorways in their pj's and such like.
If he hasn't come home then the Police need to be involved and he'd be classed as a high risk missing person - you'd be able to inform control room/attending officers that behaviours he may display are Hepatic Encephalopathy related. It may be (sadly) that he does need to be detained and kept safe.
He needs to be found for both your sakes.
Does he also have issues from his military service when you say he's taken his army clothing? Does he have PTSD or anything similar which may also exacerbate his HE issues.
Thoughts with you, I haven't been able to leave my hubby home alone since November and I know it's blooming hard work.
He does have PTSD Katie and was on antidepressants until he stopped them 2 weeks ago because he was sleeping his life away on them. I think stopping them has been a mistake.
He did come home this afternoon but still manic disappeared again this evening reappeared manic and and it's like walking on egg shells talking to him. He's wide awake when he should be exhausted it's complete insanity I have a feeling he'll leave again and to be honest I just want peace I don't have children but I have 2 cats and he's so uninterested in any of them which isn't like him I actually think he's finally gone insane. If I call mental health crisis team or police he'll hear me and dissappear before they get here it's a living nightmare.
He's hydrating and eaten and he's on antibiotics rifaximin and lactulose I'm just hoping and praying that the HE episode ends its happened before and literally calmed down gradually after sleep.
This is the hardest thing I've ever dealt with I'm emotionally and psychologically drained and tbh I'm actually starting to dread seeing him I can hear him being manic upstairs but if I move around he's totally on it paranoid I'm on phone to get him sectioned I just want peace. If I ring an MH crisis team they ask to speak to him he'll absolutely flip and I'm on my own with him he's not himself if I ring 999 or 111 the paramedics call first and again ask to speak to him and tbh I'm not sure he hasn't started taking other things which is totally out of character for him in our previous 20 years together but not that uncommon since all this started. He says he can't take the pain, hospital admissions, failed operations and prognosis anymore. My heart breaks but this Its horrendous.
Hi DD75, I really feel for you and understand what you’re going through. I have a freind who goes through similar episodes. He also had PTSD due to his army service and bipolar so there are a lot of things going on.
If you managed to get paramedics involved by calling an ambulance they could possibly deem him not having capacity and get him into hospital. The last time this happened to my freind he was living with me and I refused to allow him back to my house and now he has been in hospital for 5 weeks while they try to find accommodation for him. It was a tough decision for me but I was so fed up of the hospital discharging him after a couple of days saying he was medically fit when I knew he wasn’t. Is this something you could do, or at least make sure the doctor treating him is aware of HE and that his behaviours aren’t right and his personality has changed to the point that he needs to be in hospital until he is back to normal.
Whatever you decide, I wish you all the best and hope that your hubby gets well soon x
I have NAFLD and i take the same meds. My Doctor added miralax daily and said we could try linzess if i wanted too. I was struggling to stay regular. Right now my meds are working but still a challenge at tines.
If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays).
Here is a link to information about hepatic encephalopathy, on the link there is information about the HE passport which you may also find usefulbritishlivertrust.org.uk/in...
Hi there. There is an over lap between some forms of HE and dementia. My dad,with dementia, kept going missing and getting confused. He was only 65. In the end the social workers said he had to be admitted to a care facility. There is a point where you cannot " save" or care fully for a person you love. It's heartbreaking, devastating and feels cruel. Sometimes the dangers for the person outweigh those feelings of guilt. Could he need some form of nursing care, even for a short period.? Your situation has, what they would call, safeguarding concerns. Sometimes when you are in the situation, it is hard to step back and properly evaluate. Is he really safe anymore? Are you able to cope? If the answer to either is no, then depending on where you live, perhaps you need some crisis care. I am sorry to say this.
Yes. I came round from a episode of this. My thought were very very disjointed. I was havein bad hallucinations and thought all that was goin on in my mind was real and I mean real. With the rite tablets reflaximin I think I'm so so much better now. Insist to his consultant that he's takein back in hospital till it clears up. If they will do that. Worth an ask. Good luck to you and I pray all works out for you x
I think HE symptoms really need more support especially if a patient has had a history of mental health periods in their life. I hope the British Liver Trust would look into this more. The behaviour changes of patients with end stage liver disease have such a devastating effect on the patient and those that are caring for them. Paranoia, mood swings, hallucinations, argumentative, aggressive behaviour are just a few of the repetitive patterns liver cirrhosis patients suffer and for those with some mental health history it is definitely worse. I was really aware when caring for my mum that mental health support just wasn't there. We were left 24/7 having to try and diffuse episodes, we weren't able to leave mum unattended, and in her really heightened aggressive mood swings that after escalation would end in her collapsing into a como style sleep, I called it a shut down which took her a few days to reboot back to herself. So I feel for you there are things those caring for loved ones need to remember, they are ill, it's not their fault whatever words they throw, but ultimately if they are in a situation of harming themselves or those around them then you need to get support. So don't feel guilty about it you are doing this for your loved ones best interests and when they are themselves again they will thank you. Sending you lots of love you are not alone in this, speak to his consultant, doctor even discuss with the police as they will then be able to find him and safeguard him.
We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).
If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here britishlivertrust.org.uk/vi...
Hi, Myself and family have lived with this for the last 3 years, I have recently (last 7 days had and Liver Transplant, it has reversed everything) .We initially spoke with the transplant team and they suggest keeping checks on sugar levels as these either dropped or raised during episodes, My family itvwas like having a real life incredible hulk in the house, support was often Police as they were the only agency who can arrest under 136 mental powers.
Medication was Rifixamin which helped and in extreme circumstances GP prescribed Lorasipam to induce tiredness. Worked and worked very well.
I suggest contact yourvyransplantvteam and gather all family together, I actually could not be left on my own at anytime.
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