Coping.

I know my husband must feel awful, although he always just says he's ok, but, whatever I do, he is snappy and critical. It's not really him, but I'm struggling with the enormous change in our relationship and I just needed to moan to people that may understand!

[Kristian]

Hi Catcher,

At the stage your husband is at this is not uncommon. I know I got quite tetchy at times to say the least. That certainly just wasn't like the normal me. I was, and now back am, usually so laid back I had to stop myself falling over.

Please just bear with it for the time being. It will pass after transplant.

[Hidden]

This is my hubbys profile but we both post on it. It is very difficult being a caregiver. A disease belongs to both partners and it is a challenge for sure.

[Isabelle2]

Hi Catcher

I hate to think how I was. My oh and girls must have been saints. I had a lot of problems with HE in the months before my transplant and I dare say that made me more difficult - all that ammonia in my brain! You are being brilliant doing everything and he’s just resting and being annoyed with everyone. You have the right to feel a bit cheesed off!

Just try to enjoy the better moments.

Isabelle

Ps post transplant my relationship with my hubby is the best, ever.

[Hidden]

Hi Catcher,

Liver disease can be a pain for the spouse. My hubby has days he is full of energy and days he isn't, I find the days he feels he should be doing more or feeling better are the days he can be a bit more snippy.

I think with any long term illness or discomfort we all have some days we should just hole up away from others LOL.

Best wishes to you both,

Mary

[Smyally]

Hi Catcher. I really do feel for you and all carers as you go through just as much and possibly more than the sufferer. All I will say is just bear with him. I also suffer from HE and it does change your personality, also you feel so tired all the time, you want to be able to do things and feel useful and end up getting frustrated by the illness. I things will get better. Best wishes xx

[Suzie111]

Hi Catcher

I am struggling to understand my husband. 4 months from diagnosis and he has changed significantly. He can be snappy but he is absent a lot of the time. He seems to be in his own world. He is mainly concerned about himself and the grandchildren I seem to only be there to be his carer and housekeeper. I miss my husband as he was and feel quite lonely at home. He sleeps a lot now and is cold most of the time. X

[Gordon99 in reply to Suzie111]

I slept for 13 hours a day and needed four or five hospital blankets and slept wearing heavy jumpers, trousers and socks. Grumpy doesn’t begin to explain how I was. Intolerant is closer. I’m now okay.

[Hidden in reply to Suzie111]

Hi Daisy. Thought you were describing me. Being cold is a symptom. Had endless arguments with my wife re temperature lol. Sleep hehe, what’s being awake like. I fall asleep at least twice a day and about 2/3 hours at night. Worst is when we’re watching a really good programme and I wake up at end. Boy do I get in trouble - especially if I say “what happened” yoiks!! 😁

Miles

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[Hidden in reply to Suzie111]

It's really hard feeling as if you've lost somebody and that you're on your own.

I find the people on this site very supportive.

Take care.

[Gordon99]

When I was sick I was very intolerant and impatient. I would get unreasonably angry for the stupidest things. I would shout and moan at my kids if they put my shoes in the wrong space when I wanted to get out of bed. In my mind it had to be a particular way for some reason only I could apprehend. I was a grumpy so & so and a pain for many months, I don’t know how they put up with me. I told the person in the next bed that if he didn’t turn his telly down then I’d chuck it out the window and he’d be lucky not to follow it. It all seemed so reasonable to me!

You are allowed to feel bad, how could you not. Someone you care about is being out of character.

I put it down to the medication. I got to the stage I would explain my behaviour on my meds. I still do it now! I had a Scottish note rejected in a cafe in Cambridge recently and I went into a rant saying “you may have universities but you are so stupid that 300 years after the union you still have not learned that it is legal tender. You will take it or regret it.” When I heard myself I had to apologise ...... and blame it on my meds.

I suppose I’m saying that he can’t help himself, I couldn’t. I value my kids and those who stuck by me through the dark days.

Good luck.

[Hidden in reply to Gordon99]

Great post Gordon and so so accurate. So much the same, me, ye gods!

Miles

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[Paulinekp]

My husband was the same some days I would sit and cry with out him knowing, he had HE, and his moods would change at first he didn't know he was being grumpy but as time went one as he understood what was going on he got a bit better and would all ways feel bad after and full of apologize. He was transplanted in September and is now a different person so much more happier. So keep strong and look forward there is light at the end of the tunnel

Pauline xxx

[Jans1953]

When I was 1st ill, my hepatologist suspected I had HE (hepatic encephalopathy) and asked my husband how I was. To my surprise he said I was hell to live with. Snappy etc. I was prescribed Refaxamin & Lactulose and improved greatly my husband said. The point to remember was that I was totally unaware that I was being like this .

[Hidden in reply to Jans1953]

Hi Jans - i had Loads of HE - thought it was good fun 😁 - but I now know better thx to this forum. No-one told me about the possible / probable effects!

I had R and L - had zero effect on me. I kept getting HE regularly. Stopped now I’ve had tp 😁

Miles

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