I think Iv had a moan about this before - British Liver Trust

British Liver Trust

27,761 members14,040 posts

I think Iv had a moan about this before

Betsie55 profile image

What are the end stages of liver cirrhosis?

Some say that my hubby is just a horrible and hurtful auld man

He has cirrhosis and all the trials that brings but he is becoming very controlling and demanding, outspoken even about things that has nothing to do with him

He gets agitated and verbal if he feel he’s not in control ie like in the airport worse in the plane but thankfully I can get him to go to sleep there

Now he refuses to travel and I have to accept neither will I but I like to travel and still able

Are these all symptoms of cirrhosis or is he just a crab it auld man

11 Replies

Hi Betssie, was he ever tested for hepatic encephalopathy after your last post on his strange behaviour? Is he still not taking his meds?

You know him better than anyone, is this personality a change from his usual him?

Having an illness brings all sorts of side effects, he could just be ultra tired, lacking in patience, fed up, depressed or just like you say being a crabbit auld man. However, having cirrhosis could also lead to HE which I mentioned on your last post about it some months ago.

Have a read at the BLT page on Hepatic Encephalopathy and see if it rings any bells. If it is HE he should be seen by his medical team but I understand from your previous posts he is a very reluctant patient.

britishlivertrust.org.uk/in...

Don't be bullied by him though if he isn't complying with medical treatments that could alleviate these symptoms you have to start thinking about your own mental and physical well being. Having an illness isn't a reason to subject you to what is tantamount to abuse. What is the possibility of you going away on your own? Would he cope? Perhaps have a weekend away and see how he goes on, it might make him realise what a valuable support you are to him and how he perhaps needs to treat you better. You need to work out what is best for you if he isn't accepting the help he needs.

Katie

Betsie55 profile image
Betsie55 in reply to AyrshireK

Wow thanks for your words of wisdom

( I’m not being sarcastic)

He thinks the docs have got it wrong and we as a family are no help at all

He can get a bit tearful sometimes, he watches tv but will play what I call funeral music at the same time

He has distanced himself from old friends except for a few . If any of his friends do call in and we are having a chat he will contradict me tells me I’m wrong or talk over the top of me to the point one pal pulled him up for it then he changes the subject to something completely different

Your right he’s still not taking his meds , he is very tired ( but not sleeping at night )

Iv asked for help and from the local docs/ nurse at the surgery to be told to look on the internet there’s lots of info there and so there is but not what I need

I am due to go away with my daughter and her family for a holiday and I worried because she usually checks on him when I’m not there

When I’m not here he won’t feed himself he has other people to do that for him like takeaway but he doesn’t have much of an appetite anyway, I always have home made soup in the fridge/freezer but he won’t reheat any for himself . I get annoyed and start to feel guilty I know I shouldn’t

Thanks for the ear. I know this sounds like me me me but I do feel I could be trying something else but I don’t know what

Hello There,

Sincerely feel for you and what you are going through.

I am relatively new here and only posted once before. I think you have come to right place for support. Even if you don’t post again... do draw a lot from other members who give a lot of indirect but supportive information.

I have been married 43 years to a problem drinker He was/is a manipulative, controlling bad man. His habit controlled every aspect of our family life. Why am I still with him...that’s another story. He finally stopped drink for himself, his life ....not for me or his family.

I am finding now after 3 years of him being dry and in ESLD his associated HE puts us almost in the same position as when he was on the booze, With behaviours much the same as your partner.

Seek medical review and if it is HE make sure the healthcare professionals Medicate and educate you well. Only in the last few weeks with the help of the helpline and this forum have I received the Healthcare information I should have had 3 years ago.

Your Sanity and time for you is important. I do have outside interests that don’t involve him and I do go away which is empowering and rejuvenating even if I have a lot of pieces to pick up on my return.

Make this all about you as the individual and not as “the other half” “partner”.....best of luck in your journey.

Trust1 profile image
Trust1Administrator

Hi Betsie55

We are so pleased to read the supportive replies here from our members. Living with someone with advanced liver disease can be very challenging for many different reasons.

As the members have suggested, it would be a good idea to ask the specialist about assessment for Hepatic Encephalopathy (HE)

The doctors and nurses can also offer more support than 'look on the internet' They have a duty of care to listen to your concerns and advise. Could you consider making another appointment with the consultant in charge of his care?

If you would like a further chat our nurse led helpline is open today until 3pm on 0800 652 7330

Warm wishes

Trust1

I have cirrhosis and also a wife who has put up with a lot since I was diagnosed in Nov 2017.

Life is very different now and all its trails do put a lot of strain on both the partner and the one going through it.

I can see it from both sides so do understand your hubby’s feeling of denial / distancing himself from friends etc.

However this is no excuse to treat you badly, at the end of the day you are there to help.

When diagnosed you go through a myriad of feelings,

The major ones I have been or go through are, some I assume will be similar to your husbands:

1.Why me

2.It’s my fault, I drank too much (regardless of whether this was more or less than other friends / family)

3.I don’t deserve to live and everyone would be better off without me

4.Very embarrassed and a feeling that people are judging me / looking down on me.

5.Angry / snappy – how can anyone know how bad I feel and appreciate what I am going through (often directed at the ones closest to me).

6.I don’t want to see friends, they all must talk about me behind my back and think bad of me.

7.A general feeling or worthlessness.

The above points resulted in a change of personality for me.

I would swing between “live life for today” to “I want to end it all now”, it’s hard to see a future when everything you read is “end stage” and “reduced lifespan” etc.

You do become very opinionated as well, I have said things to people that looking back I would never normally say. I now have to apply my own little filter, I think through what I am going to say and if its rude / opinionated I stop myself or run it past my wife first.

Now, after 2 years I feel I am in a place where I can be happy, tomorrow is another day and nobody knows what it holds. If anything I / we sufferers are better placed as we have that many checks we kind of know what to expect tomorrow.

I have days where I feel sorry for myself but the happy days outweigh them 10 fold, yes I take god knows how many tablets (including anti-depressants) but I take each day as it comes.

I can be a grumpy old sod at times but I realise when I am being unreasonable and do what I can to fix it, I am trying acupuncture Saturday to help with a recent snappy bout I am going through, may or may not help but worth a try.

One thing that will help (and has helped me loads) is, if you can, get your husband to talk to someone who is in a similar situation to him. This forum is a great place to start and it really does help to speak to people who actually do know what it’s like.

I for one am very happy to talk / give whatever advice I can and I know many others will feel the same.

Make sure you look after yourself through all this as it’s a very hard journey for both the sufferer and those closest.

Perhaps call the helpline here on the British Liver Trust website, they will have information and help for the Carer who is often overlooked in this situation.

As I said, if I can be of any help please let me know, sure my wife can also tell you her experience of looking after me 

Take care,

Chris

x

Brilliantly put across Chris. 👍👍👍👍👍. That will ring bells for many of us on here for sure!

Miles

in reply to Chris-harris

Hi Chris

I just wanted to wish you good luck with the acupuncture on Saturday and hope it helps!

I had acupuncture many years ago for something different and found it very sucessful!

All the best

Trish

Chris-harris profile image
Chris-harris in reply to

Hi Trish,

I am open for any treatment so anything that may help I will give a go.

Before anyone queries I did speak to GP and consultant re accupuncture and both thought it a good idea :)

Thanks,

Chris x

in reply to Chris-harris

Hi Chris

My GP gave me acupuncture from totally out of the blue to treat acute upper back and neck pain after being in a nasty right off car accident! This was after a month in hospital in 1998! I must say the acupuncture did the trick back then!

Will be thinking of you and my fingers it will be crossed it helps!'

Love Trish x

Trust1 profile image
Trust1Administrator in reply to Chris-harris

What a kind and helpful reply, thank you Chris.

He is scared!

It's as simple as that!

You may also like...