Feeling guilty ☹️

[Heartbr0ken]

My partner has been home from hospital nearly three weeks now.I exploded over the weekend and had a complete rant at him as I was feeling low, tired and completely worried about him. I told him I felt like his nurse rather than his partner. I wish I could take it all back 😢😢He is eating well, drinking fluids well but didn’t tell me he hadn’t been going to the toilet properly. He has gone backward a little in his recovery as the toilet routine and lactulose was broken. He had a very unsettled night last night, constantly up and down to go to the loo (lucky we have an en-suite). His Ascites is making him feel bloated and the jaundice has eased slightly. He is so tired and currently resting on the settee after medication and breakfast. I’ve been so sad looking at him, mourning our past life and I know it’s a long road ahead and just want us to get back some normality. We used to love walking and we walked for miles and my partner is a keen cyclist. He is missing this immensely. Sorry for the moaning xxx

[h0b0]

You're not the first & you certainly wont be the last person to feel this way. Although I never said anything I did have the same thoughts as yourself. People tend to forget how hard it is to care for someone with this horrible illness. No one ever asked how I was doing, only how my partner was as he was the one that was ill. We are now just over 4 years post xplant & things are great. I hope this helps you & that you find yourselves in the same position soon. Please take care of yourself & if possible try & find support for YOU.xx

[Laura009]

There's nothing l can say except to offer you sympathy, l know just how you feel.

L x

[Hidden]

Good morning Heartbr0ken,

I am sorry to hear your experiences, but I am glad that you can come onto this forum for support.

You can also call the nurse led helpline on 0800 652 7330 Mon-Fri 10am-3pm if you should wish to talk things through.

Take care,

Trust9

[Suzie111]

2 years ago I was in the same situation as you. It is very hard to care for someone who suffers from liver disease. You don’t say what caused it. My husbands was due to alcohol. Not enormous amounts but a steady intake of wine every evening. I had constantly told him he needed to cut down for his health for several years before he was rushed to A&E. He hasn’t drunk a drop since and is now nearly 18 months post transplant.

It was a long struggle and I felt that the whole of my life had been whipped from under my feet. We used to socialise a lot but rarely do now. I still get angry and blame him but then start to feel sorry for him. I think the best way to cope is to take each day at a time and try to make the most of his good days. My husband was so tired and lost 5 stone in weight. The transplant cured this which was great and we started to plan for the future and enjoy days out again. Keep strong and I hope things improve for you both. X

[Heartbr0ken in reply to Suzie111]

Hi Suzie111,

My partners liver disease also caused by alcohol. He enjoyed a few beers in front of the tv and going out socialising. He used to do dry January or stop before we went away so he could lose weight. He even said two days before being admitted to hospital he was stopping drinking as he started to feel unwell. It’s awful to see him like this after doing so well in recent weeks. When I read the positive news from people like yourself it does bring me some hope and I pray that the outcome for us is the same x

[Sqwarks]

Morning i understood what you said but on the other side of it,I had a partner who didn’t actually care or help me and it’s an awful feeling, i’ve have been through everything your husband is going through now but alone.

He will understand why you have lost the plot ( your human) and will allso realise that you care about him.i wouldn’t grieve for your previous life either as you can get it back, it will happen especially with all your love and care, he is very lucky.

It’s been nearly 1 and a half yrs since i was where your husband is now. i’m walking the dogs, running around cleaning, cooking, shoppping so hang in there it will get better! obvs i feel shity some days but nothing major. and my liver will never be better, but when he gets back on his feet, literally you will enjoy your long walks evan more 👍i allso got rid of the partner who i was with for 20 odd years. good luck xx

[Huggy7614]

Hi Heartbroken,

Don’t apologise for having a moan. I will be forever grateful to my partner for all she put up with when I was poorly!! I think the problem is I never realised how cantankerous I was, but then I never realised how ill I was, until after my transplant!! We do now laugh and joke about certain things I did during he episodes, and she does remind me of how things were, because I genuinely didn’t realise at the time.

We all know on here just how supportive you’re being, just reading your posts tell the story. Hopefully he will improve and you’ll be able to laugh with him about these moments to. Genuinely, partners are the unsung hero’s through this.

Fortunatly my partner WAS asked how she was by consultants and nurses at times.

Stay strong and good luck to you both.

Andy.

[Janty701]

Hi, he will be frustrated too so you must talk about it when you feel thst you can. My husband does everything for me and I hate it. I've always been really independent, I was an assistant headteacher, we went on walking holidays and we enjoyed our life together. Ten years ago I had pains in the middle of my torso. It got worse and worse and they discovered that my liver was full of cysts and over the years it started crushing me from the inside. Two years ago I had to retire due to ill health and a year ago I had my transplant. By that time my liver weighed 3 1/4 stone. My husband still says, 'I'll do that' all the time. The other day I blew up at him. I told him that I was going to have that carved on his grave stone. I said that I couldn't wait until he went back to school so that I could enjoy life without feeling smothered. I also told him that if he carried on like this that is leave him before he had a chance to retire. I don't mean it at all but its hard for me to not be able to do things as I used to.

[X19Dave]

Hi is he waiting on a transplant or stuck how he is

my wife had a transplant and we had 3 years of very bad times but I am a bit lucky my job always gives me people with problems so I have to deal with it every day but it still was not easy with my wife, the hospital gives the person who is unwell support and help but NO ONE gives us as the supporters any help and support you are in a very difficult situation and no matter what you do you will question yourselfe but be assured there is no right and wrong for what you are doing every now and then you will have a blow out, i know it is not easy but see if friends or family will come round and help him for a while and get yourselfe out and away for a short while so you get the chance to proccess everything that is in your head YOU DO NEED A BREAK AND THERE IS NOTHING WRONG IN TAKING ONE

look after yourselfe as well as yourpartner

Thinking of you

Dave

[Heartbr0ken in reply to X19Dave]

He’s not on the transplant list at the moment. He’s just been taken to hospital as his sugar level is 33!!!! His parents have been taking him to their house for a while which has helped immensely. It’s the constant worrying that’s bribing me down. I’m even more worried now after this

[X19Dave in reply to Heartbr0ken]

Hi sorry to say and i know you will know but worrying does not help it only makes things worse push the hospital for what they know ask if he needs a transplant and if you have not ask about a diet to help his problems and also ask if there is any medication they can prescribe but you must give full and correct details about what is wrong and from my wife she never gave up everything that was always down to me

Dave

[tanguistil23]

it's completely understandable to feel this way- it is so frustrating no being able to speed the loved one to recovery. I expect things will improve- I was told I would never grow old by my Consultant- and I am 68 - not ancient, but feels good to me !

[Dodger1953]

Hello Heartbr0ken, Although in our case I was the patient I'm sure my wife felt the same as you at many points in my illness and we have both come through it and I think the ordeal has strengthed our marriage, I dont know what area you are from but we are from the North East, and in this area we have a charity called LIVErNORTH and if you go on their website they have many people you can call and speak to, they are a wonderful bunch of people, have faith you both will come through it together. XX

[Chatterbox3517]

Oh HeartbrOken, I feel ur pain!! I know it's hard but just give him lots of love, always have a smile on ur face, enjoy every moment with him!! It won't last forever!! It's sad to see them wither away in front of our very eyes!!! Sending you lots of hugs!!! 🤗