Update on hubby.: As most of you are... - British Liver Trust

British Liver Trust

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Update on hubby.

30 Replies

As most of you are aware hubby isnt atall well.

He had bloods done two months ago and his gamma was 535, his protein level was 22,supprisingly his kidneys were ok. He has lost most of his body weight now, just skin and bone, he is very weak on his legs and they are painful due to nerve damage and muscle wastage. Now i dont know what his bloods would be now, i imagine his gamma has raised more, his protein is lower, and his kidneys affected.

He has never been a big eater but he goes months without eating and when he does eat its not enough to keep a mouse alive, He ate four mouth fulls of soup late fri night and woke up early sat being sick. Hes been in bed since ,been sick but with nothing much coming up now.Before he took to his bed, for a few days he wasnt getting up until between 4 pm and 9 pm and going back to bed just a few hours later.

He is now at the stage where he is sleeping alot but the moment he wakes up he is in agony with his stomach, Hes only been to the bathroom 4 times since sat morning.

Please dont reply with messages like , he should be in hospital because he wont go, or he is being spiteful, or any thing that attacks his character, Im to tired to be hearing it today.

Thanx for listening.

Lyn..

30 Replies
AyrshireK profile image
AyrshireK

Sorry for your sake Lyn that it has come to this, you certainly couldn't have done more to help him. I take it hubby is still not accepting how poorly he is? Sorry I can't offer any further advice, you know what he needs and sadly without accepting the help (especially if he is still drinking) it sounds awfully like his systems are packing down.

As we've said previously, you take care of yourself in all this too because it isn't going to be very pleasant.

Lots of love, Katie xx

in reply toAyrshireK

Thankyou Katie,

I agree with Katie. Your story breaks my heart so can't even imagine how it is for you. I would say call a GP or doctor out not to get him admitted but just to make him comfy. He may need some pain killers or anti sickness just so he can rest comfy. They can't force him in and even if they do I doubt the hospital can do anymore then you can do at home.

I know if it was my hubby he would want to be pain free and at home if I were you I would just curl up next to him in bed.

Xx

in reply to

Ty Poppy.

I bought him over the counter pain killers yesterday,its a gel so easier to swollow and goes straight into his system and its not causing him to be sick. He doesnt want me next to him as he feels closed in and is hot to touch,but he knows im here for him if he needs me..

You need to do what's best for him and you are the one that knows that. Do you have someone around with you to keep an eye on him so you can rest?

let the doctor know as they should be able to give him an injection of painrelief, anti sickness etc if he gets any worse, call 111 for this it would make a difference.

Just spend time with him doing what he wants and needs. Do his parents know?

Xx

in reply to

No i dont have anyone around me that can sit with him, the ones i know who could are working, If he does get worse or i cant wake him i will be ringing the emergency ,i check on him every 10 mins, No his parents dont know how bad he is and unless he ends up in the hospital i wont be ringing them, i know that sounds harsh but they will do more harm than good, they would cause him and me more stress than its worth , i have already had many a row with them over the way they treat him, if he ends up in the hospital they will be the first people i ring to let them know.

He is sleeping which in a way is good because means he isnt in pain, and his body is resting.

Will keep you updated on any progress..

That's fair enough not all parents are good to have around I get that. You have to do what's best for him. Please do keeper updated.

Its good he is sleeping.

Thinking of you both. Xx

in reply to

Thankyou poppy . Just after I sent you the last message his mum texted me and asked if he was ok. Lol . I said he's ill and in bed but haven't told her anything else just said I'll let her know if he gets worse . She asked what was wrong I said stomach pains ,sarcastically she said what because he refuses to eat? I said no he's been trying to eat . She said oh that's ok then . Hate sarcastic people especially if it's from the ones we love .

Me too there's a time and a place and when someone's that ill it's not the time. It could be her way of dealing with her son being so ill but its not what you need at the moment at all!! He probably wouldn't be able to digest food now anyway.

X

Catfishjumpin profile image
Catfishjumpin

I am very sorry you are having to see your husband so ill. It seems you are aware of how close he is to dying. You clearly love him to choose to witness such saddness. I am sure you are trying to hold your family together and paying the price for doing so. Its a huge sacrifice but when he goes, they will only have you. All of this will be all of your memories of his last days. Its a shame he and his family especially you cannot have a few sober years together. Alcohol addict is one of the worst imaginable diseases. You must be very worn thin from all of this. He sounds very near his ending. Its very heart breaking. I am thankful I have been sober for years but another disease came along and woke me up. After a year of inferon I never wanted another drink. The interferon did not work but left me physically and emotionally crippled. That drug was the hardest thing I ever did in my life after it, I was determined to get well. I never drank again and every year of my life since 2004 and inferon have been a struggle to live. I lost total interest in alcohol and instead took up endurance exercise but I have lived in liver failure since 2011. We must be glad we are sober and do ot have his illness Lynn. The children are lucky to have a non addicted parent. It could easily be you dying and leaving the children then they would be left with no one but an ill dying father to look after. Its almost over, it sounds. I am sorry but thankful for your soberity. Best wishes.

Thinking of you x

Urbanblanks profile image
Urbanblanks

Hi lynne all I can say is that I hope he ca get peace at some stage sweetheart and that they can help wiv the pain relief simehow love to u both ricky

Lperica10 profile image
Lperica10

Thinking of you Lyn! I wish we weren't an ocean apart! Then we could meet and support one another in person. I know you helped me a lot on here I hope we can do the same for you during this time.

Jellybabe70 profile image
Jellybabe70

I'm not going to say sorry, just going to say that we are here. sometimes there is nothing anyone (including you) can do. don't feel you have to be "strong" just vent or cry or shout and scream if you need to. oh and don't be afraid to laugh at the irony and ridiculousness of it all either. we'recommend here whenever you need us. sending love.

Nhaamor51 profile image
Nhaamor51

Do you have any type of hospice program? This is a decision you could probably make for him. No one should have to die in pain. They are unbelievable people who know just what to do not only for the patient but also the family. They may be able to give him some pain free time with you. Considering the shape he is in his doctor maybe able to place him in hospice. Just a thought to possibly make his passing easier for both of you. My thoughts are with you!

Thinking of you both. Let is know how you are when you can. Shitty situation xx

tillycindy profile image
tillycindy in reply to

Hello lyn poppet, replied to you on other site. xxx Poppy, often think of you let me know how things are going with you. anne xxx

pip-lit profile image
pip-lit

I'm sorry Lyn, it must be so hard for you to see your husband like this and to bear the knowledge of how ill he is alone. You must try to take care of yourself, and make use of any support you can - if he won't go to hospital maybe palliative care nurses can visit you, maybe get in touch with your/his GP. Hang on in there you are doing a wonderful thing for him, being there, whether he is able to realise that or not. xxxx

I'm so sorry to hear this Lyn, I've followed your posts.....always in the hope that there would be some light at the end of the tunnel for you and your husband.

Sadly, I've experienced both sides....I drank alcoholicly for a few years and when I read your heartache I am more full of gratitude than ever for the gift of sobriety, almost 10 years now. Fortunately, I sought help with AA before I caused any lasting damage, however, I remember the severe weight loss, always feeling sick, I just couldn't face food and the dry retching every day would hurt so much because there was nothing inside me.

I don't believe any of us who suffer this dreadful disease just wake up one morning and decide we want to destroy our lives or cause pain to our loved ones. There is usually a trigger, I know mine was the loss of a child, but I do believe we all have something, no matter how deep rooted, that takes us down this dreadful path.

I joined this site whilst trying to help a friend of mine who is also dying as a result of this horrible illness. It is soul destroying to watch but she refuses all help and ultimately we are powerless over that.

You have shown love, loyalty, compassion and commitment...that takes an extra special person. You have stuck by your wedding vows "for better or worse, in sickness and in health".

Praying for you both during this very difficult time 🙏🏻

Love and a big hug, Jacqui x

tillycindy profile image
tillycindy in reply to

Hi Jacqui, Glad to see you about, been thinking of you and mum. keep in touch anytime, anne x x

in reply totillycindy

Hi Anne, thank you xx It's been a hard few days, don't know where the tears keep coming from but they sure do keep flowing. My mums scan results weren't good, I've been heartbroken 😥 Today I took her to Boots to get a thermometer and mouthwash etc ready for her chemo which starts on Friday. I just wanted to hug her and make it all go away...she's so anxious and like a lost little girl. It's so hard holding it together when I'm with her, when I get home I go to pieces. I am so scared I can't tell you...here are the tears again 😥 For the first time i didn't visit yesterday, I couldn't, felt so emotional I didn't trust myself to stay strong for her. She rang because I hadn't been in touch and had to tell her I'd had a migraine all day, which wasn't a lie...my head was throbbing. This is always a difficult time of year, tomorrow is Joseph's anniversary, he would've been 16 on 1st November, I came home from hospital the day before my birthday on 3rd November. Now I'll add the start of my mums journey to the dreaded November. But I'm sober, and for that I'm eternally grateful. It's the greatest gift, without it I would be no good to my mum at all. I'll be in touch to let you know how things go. Love, Jacqui xx Ps had a drunken messsge to myself and Andy from Amara on my phone last week apologising for her behaviour. She obv is still refusing help.

tillycindy profile image
tillycindy in reply to

Oh God love. I had a feeling your mum would go for it. I,ve always said I wouldn,t but truth is until we are in that position none of us knows or can comment on other peoples choices. When it comes down to it, and the alternative is death we clutch at any line thrown our way. I know your feelings on it Jacqui. All you can do is support her as much as you can and try to stay strong. (I know). Amara, she.ll be apologising till the cows come home, It,s actions that count. The one small blessing in all of this is that you have managed to stay sober. I had worried. Now that takes some strength!. Contact whenever, love anne x

in reply totillycindy

I know Anne....I'm dreading it, you know my feelings about it. I think if the outcome of treatment outweighs the dreadful side effects then go for it but I don't think this is the case for my mum. I just don't want to watch her suffer any more than she has to. My heart is breaking for her, I've never felt such pain. If you had told me 10 years ago I could face such traumatic times without a drink I would never have believed you, it would've been the first thing I reached out for to block the pain, to numb my brain so I didn't have to feel or think. I can only say that my continued sobriety is a miracle and someone up there is looking after me. Not once has it entered my mind as a solution..,once upon a time it was my solution to everything. In that respect I am truly blessed. As for Amara, as you say, she can apologise til the cows come home. My time is devoted to my mum, I've tried my best with Amara over the years and on 2 occasions now she has behaved dreadfully, always excuses her inability to stop because her life's so crap...welcome to the real world Amara, we all have crap to deal with. Best of it is the only crap she drinks on is her children not wanting to visit because of her drinking. I passed her number to someone else in AA and deleted the message. I've got enough on my plate to deal with, my GP has had to adjust my meds because my neuro disorder doesn't like change, the extra time out of the house is playing havoc with my pain. I'm gritting my teeth telling my mum I'm fine because I don't want her worrying about me on top of everything else. She keeps on about my weight loss, again I blame my meds when really I'm struggling to eat because of the increase in pain and the stress. But still, nothing compared to what my lovely mum is going through. Sorry if I worried you going quiet...still here, still sober and grateful to you all on here. Jacqui xxx

tillycindy profile image
tillycindy in reply to

Don,t worry. Knew you,d message when able to. Hope mum has been able to tell her friends now, to share the load on your shoulders if nothing else. x

in reply totillycindy

No she hasn't. She's avoiding all calls on the landline so I have to ring her mobile so she can see it's me calling. Her GP rang 3 times last week and she didn't return her calls which is so unlike her as she has a lovely relationship with her. My emergency appt last Thursday just happened to be with my mums GP and she said she was visiting her the next day. So I called in on my way home just to make sure she'd heard the message left by the GP. She had and so she saw her on Friday, perked up a bit, until today. I don't think she's sure about the chemo esp as its getting closer. I told her she can always stop the treatment at any point, that it's always got to be her choice, she's the one in control and whatever she decides must be what she feels is best for her. xx

Thankyou all for your replys, you are all so kind and i appreciate your answers, I was going to answer individually but thought it will be easier to put it here all in one,

You all know i have said how ill hubby was well, he got up at 7 pm when my youngest son came , he didnt look or sound well but he stayed up, by midnight he was exausted and was ready for bed. Went to bed and after just 10 mins of sleeping he was awake, he woke me up to tell me he couldnt sleep,i drifted off to sleep , he woke me up again after another hour telling me he couldnt sleep and would i talk with him, so i talked with him and fell sleep, i woke up to him out of bed drinking, from 4 am he was waking me up every hour to say he couldnt sleep,eventually he woke me up at 7,30 and asked me if i wanted a cuppa. I did say to him you are determined not to let me sleep, anyway i got up and he made us both tea (he hasnt drank tea in i dont know how long let alone make it.

He insisted he had to go to the drs to put in his script but i had already made plans to meet my nephew and his gf and children at 11 am, i told him this and he said its ok i can go by myself, i said you arent going any where by yourself today. He said why not? i said because the whole time i would be worried sick that you might fall, you have been in bed all over the weekend, you arent steady on your feet walking around the flat, let alone to the drs,anyway i suggested he come with me to meet my nephew (to do this we would have to catch the bus to town which is 20 min drive and then walk to the cafe.)He agreed to come. We got to town and the cafe is a 10 min walk , it took us 20 mins because he had to keep stopping because he was out of breath and in alot of pain with his legs and feet..

He appeared and sounded drunk but he hadnt drank enough to be drunk, On the way home we decided to stay on the bus to the drs to drop hubbys script in and half way there hubby said his ears just gone wiered and then he couldnt talk or hear in the left ear, When we got to the drs i asked if he could be seen and explained how ill he had been over the weekend and about the new thing that had happened and they said he could see dr but he had to come back. We went back by the time we went back hubby could speak but the most he could do was whisper,he said i dont like this dr im seeing, i said why not? he said because he isnt very good, i thought he was just saying it (never been in to this one before ) but i am inclind to agree with hubby, he is rubbish.

Dr said what can i do for you ? Hubby couldnt speak properly so i told the dr what had happened all weekend and about his hearing and voice and the dr ignored everything i said and he again asked hubby, i got the feeling the dr wanted to say im not asking you im asking hubby, think if he had said that i would have gone mad. Hubby said she just told you, he asked him how much had he drank in the last 24 hours so i told him , he examinded hubbies stomach and said its all alcohol related, i said to the dr i noticed hubbys mouth had dropped to the one side in the last hour, the dr didnt even examine his mouth, didnt check his blood preasure/his heart rate,nothing,just said ill give you more water tablets and here is a number to contact should you require to get off the booze..and bloods done again.

We got home hubby could barely stay awake, but he struggled he said i might give that number a try tomorow , im thinking of giving it all up, we talked and he said all i need is you, i dont need that stuff, i smiled and said ok well you know thats what is killing you so of course im over the moon about this,( but im not holding onto it) because hes done this before, went to see someone and they accepted him into the group and he came out and said im not doing that, ill do it myself , he gave it up for a few days and then felt better and started drinking again, I said why start tommorow? why not have a drink because i know you cant just stop like that but have half of what you would normally have, he said ok tommorow not tonight im not being pressured into stopping, so i shut up.I made cornbeef hash and he ate two mouth fulls of it, We went to bed at midnight with hubby complaining of stomach pains and feeling sick , we both fell asleep and i woke up at 7,30 am to hubby in alot of pain and feeling sick, so gave him some of the meds i bought that treats IBS and he went back to sleep, so not sure what today will bring.

Catfish you mentioned the kids , none of them are his kids, they are mine from my first marriage ,my youngest is 18 and eldest is 32, but i agree im glad its not me thats sick.I did used to drink alot but when i have seen what its doing to hubby i stopped.

Im not well myself at the moment,i have a chest infection.

It was mentioned about having fortified drinks but the dr wont give it to him because everything hubby eats makes him sick..

Dont have a hospice program or anything like that, they wont give it to him because they dont think he needs it, His drs are rubbish, i told my drs about how they are treating him and she suggested he change drs, but hubby wont change because he says they have known him all his life.

If a paitent goes in with lung cancer and they have said its because of smokin that they have it and still continue to smoke the drs give them all the help they need, and yet when an alcoholic is very ill and continues to drink they wont help them, makes no sense to me, both have caused their own ilness and both continue to live that lifestyle and yet one is helped and the other isnt..

Hope everyone is ok.

Will keep you all updated.Your all gems.:).

Lyn..

I know what you mean about the judgment from the Medical profession makes me angry. Keep up the fight. Xx

in reply to

ty poppy.:)

Jellybabe70 profile image
Jellybabe70

Totally agree with you Lynn!

I feel for you..it sounds SOO much like what we've been through. My husband has been through every symptom..im sure. All I can say is it will get worse so prepare yourself. Don't try and understand the disease. Every story is different. My husband has stage 4liver disease. He's beat death a cple times. He's had ascites, H.E, breathless, unable to sleep, too many hospitals. Every time I think he's gone he pulls thru. It is crazy. To this day he is in Palliative Home care in the city. I cannot take him out anymore as he has trouble breathing even more. He needs to be near his oxygen and safety. He's swollen in the feet,stomach and legs. So my prayers go out to you. Make sure you have support.

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