Day 21 Hubby update - looks like he mi... - British Liver Trust

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Day 21 Hubby update - looks like he might be heading back to square one

mumof3girls
mumof3girls

Sorry but this is going to be a long one, as I need your support today, I think it is all getting to me and you guys are always telling me to look after myself as well.

He has been drinking heavily again the last two days, from having just 2 or 3 cans of cider a day, he had 6 on Friday and 8 yesterday. Both days he was helping our neighbour in his garden. Hubby could not sleep and was chatting in his asleep again last night which he has not done for a couple of weeks now. At 3am hubby muttered about not being able to sleep, even though he had tried to get half pissed last night to try and help him sleep.

Yesterday he picked up his new prescription medications Rifaximin, Lactulose & Spironolactone. He took his first doses at lunchtime yesterday, but then in the afternoon had an upset stomach? Could this have been the Lactulose? Plus Hubby barely eats, so does not create much waste. Or could it have been where hubby has upped his alcohol consumption the day before? Hubby is blaming the Lactulose and says he is not taking anymore of that.

Hubby is still not sleeping and has not been for months now.

Hubby's neuropathy is all over the place too and he has been complaining of discomfort in his feet again over the past few days.

Hubby is always short of breath and his Ascites has given him a swollen tummy. He has discomfort in his stomach too.

Hubby's memory is shot. Since lockdown in March 2020 hubby has been stuck indoors bored, so has taken over doing some household chores, ie dishwasher, washing machine and tumble dryer. However what would take me 5 minutes, takes hubby hours. As he starts a job, gets distracted, then started another job and then the cycle starts all over again. So within half an hour all the jobs are half started. Hubby also goes to get something from another room and then forgets what he went to get. Hubby and I have been laughing about this, but I know its not funny and probably means he definitely has Hepatic Encephalopathy now as well.

Our house move is imminent (potentially 3rd march) and hubby is looking forward to being closer to his girls but is also absolutely dreading it. He is moaning at me all the time. The house that he picked and fell in love with and pressured me to buy as quickly as possible is now the house he is calling his coffin. he now says it was me that liked it and not him. He says that I am forcing him to move and he does not want to. He is moaning about the area the house is in now, whereas he loved it before. He is moaning about the work that we need to do on the new house, whereas before he was up for doing loads and I was having to rail him back with his plans.

On top of all this we are in the middle of some confidential family stuff too, that is adding pressure, that we really don't need at the moment.

People ask me how I am and I say I am fine, but I am not at the moment. I comfort eat when things are getting me down. I am at my all time heaviest and feel very uncomfortable and my jeans don't fit. I am not as active as normal due to covid and packing up the house ready to move. I have been feeling low, which really isn't like me at all. I feel that it is all on my shoulders at the moment, which I normally thrive on. People are always telling me they don't know how I do all of the stuff that I do.

Then of course you have Covid and lockdown, which means that the family and friends, who would ordinarily be around to support us and not able to come and help us. Hubby had his Covid Vaccine last week and I have mine this week coming. I guess my asthma has put me up the list, as I am only 51?

Hubby has more blood tests booked for next week, as his GP wants to check his levels after being on the new medications for a week or so.

Hubby is going to get fitted with a 24hr ECG 10/3/2021. If you remember hubby had some blackouts and got referred to an Elderly care specialist who specialises in trips and falls. He said that he did not want to just assume that the blackouts were due to hubby's lifestyle choices, so was going to arrange an ecg to check out his heart. Hubby then has a tel appt with the specialist in May 2021 to discuss the results.

Then hubby has a Hepatology review in July

The alcohol addiction counsellor's want hubby to join a Microsoft teams group on Monday. Hubby missed it last week due to his heavy drinking last Sunday. Hubby is also a technophobe, so is very unsure about how to use online devices. I am going to try and persuade him to join in tmrw, but not sure if he will or he wont. Hoping they will phone him again this week

In the past people have suggested that I leave hubby or kick him out. I have been with hubby since I was 17 and I do not think I am at that point yet. There have been days when I have considered it though. I also know that my daughters would take their dad in, as he has no where else to go and I cannot let that happen. My girls are all just starting out on their lives and I could not burden them with their dad and his drinking. So that is not an option i am willing to take. At the end of the day the vows said in sickness and in health and my hubby is very sick. Plus like I have mentioned before I know the guy I married is still in there somewhere, although on some days it is very hard to see

Not sure what hubby is going to do now with his drinking? Not sure if he has definitely fallen off of the so called wagon or whether he will get his head back around it again today or tmrw? If he starts drinking again, then I know his liver will not take much more. When I asked the specialist in Jan roughly how long he would have left if he did not stop drinking the specialist said it was very hard to answer, as everyone is different but about 2 years?

We are off to our support bubble today to see our 4mth old grandson, so that will perk us both up

thanks Lisa

24 Replies

Hello Lisa

I'm sorry to read of the situation as it stands.

Having read over your post and the last couple you have sent, I personally think hubby should be doing a hospital detox.

He has tried to reduce to the point where he could have safely stopped with the ongoing support of his alcohol Councillor

I was drinking up to 7 plus cans of cider a day 4.5 % volume.

I eventually came down to 3 cans where upon I stopped, this was back in 2008 when told I had cirrhosis and my health was very bad.

I did not have neuropathy at the time but I do now, I struggle with the pain and at night the electric shocks shooting down my leg

I myself Lisa am moving next Saturday, as we know moving is so so stressful.in many ways pre and post.

Hubby won't be strong enough to do all these so called renovation plans you may have Lisa, he is too poorly mentally and physically I'm sorry to say.

Please note I am not a medical practitioner but im only going by my own experiences Lisa

His tummy pain could be many factors, lactulose can upset the tummy, for some they cannot tolerate it , I was fine with it myself, ascites causes tummy pain when the water starts to build up a lot .

Never been on rifaxamin so I can't comment.

You yourself Lisa have continued to support hubby, and I know how much of a roller coaster ride this is ,

Have you not spoken to the Alanon support over the phone?

Lisa on here has been through the same as you , try sending her a private message, I am confident she can help.

When drs or hematologist diagnose and tell you of a expected life span etc. Please let hubby know that where the liver is concerned and struggling to function this affects all other major organs, and it is not set in stone on life expectancy, I do wonder if hubby has thought about this and just thinks it is still OK to continue his days of heavy consumption thinking he is not going to die anytime soon .

This is not the case I'm afraid Lisa 😳. As with any illness things can turn around very quickly either way depending on choices etc .

Please try not to worry, you can only do so much, the rest is down to how badly hubby wants to stop, once you get that mindset that's half the battle won

Thinking of you sending big (hugs)

Linda x

mumof3girls
mumof3girls in reply to Millie09

Thanks Linda. I think you are right about a hospital detox, but its getting him there, that is the problem. As since my cancer treatments in 2009, hubby has a real phobia of hospitals. The renovation plans are all hubby's, as he thinks he is still a builder!! I may have a look at Alanon once we have moved, as this week is all about packing. I understand too about how quickly things can change, but not sure hubby does, he thinks he is invincible. Think 2021 is going to be another tough year for our family x

Millie09
Millie09 in reply to mumof3girls

Hi Lisa Bless you .

It is a tough situation isn't it , I'm sorry to hear of your cancer treatment of which I hope is all clear for you now.

Try and concentrate on you! do your packing, write all things that need to be done etc before you move , otherwise concentrating just on hubby will set you back and cause more anxiety

There really is only so much you and the girls can do.

He needs a Tour around a liver unit ward, that would wake him up !!

If you need to ever chat please always message me if needed x

mumof3girls
mumof3girls in reply to Millie09

Thanks Linda. I had stage 3 very aggressive breast cancer. They threw every treatment possible at me as I was only 39 when diagnosed. Mastectomy, chemo, radio and Herceptin. Thankfully it all worked and I have been cancer free since 2009. It changed me forever and I always live for today. I remember one day during my chemo picking hubby up from the pub. One of the other builders jokingly commented to me, did you not see the sign when you came in Lisa, no hats to be worn at the bar. With that I took off my hat and put it on the bar, you should have seen the 20+ builders faces. I stood there for another 5-10mins with my bald head, even though they had told me to put my hat back on. I told hubby to take his time finishing his pint. I found it really funny, the looks on the builders faces was so funny, as they obviously had not seen a woman with a bald head. Hubby said the builders talked about it for weeks afterwards and the guy who made the comment got a right telling off by the other builders.

My breast cancer was where hubby's drinking started to go down hill. Our daughters were all at senior school then and hubby was petrified that I was going to die. However I knew he would not cope, so did everything I could to fight the cancer and survive.

When things go wrong in hubby's life, this is when he hits the alcohol hard

I like your idea about writing a to do list

thanks Linda

Wonderful story about the hat Lisa ! Can hubby not see that instead of being affraid of hospitals he should recognise that it's the place to go to be cured? If you hadn't gone in for surgery and treatment, along with your strength and determination, you wouldn't be around for him today.

Oh yes that's another problem isn't it.... ? When they are feeling a bit low they drink.... and when all is good with the world they drink. There is always an excuse for it in an addicts eyes.

I go along with everything Linda has said and suggested .Feel free to message me privately again too if you wish.

Laura x

That's exactly what I have told hubby for years, that he is looking at it all the wrong way, the hospital saved my live. Yes there is always a reason why. thanks Laura

Millie09
Millie09 in reply to mumof3girls

Hi Lisa What a wonderful story and journey! Love the hat part lol

You are A credit to yourself Lisa and such positivity..

I can understand how hubby started drinking when you were diagnosed, but on the other hand I looked after my dad for 16 months in 2011 when he was diagnosed with lung cancer, went to every appt ,drs hospitals, sat with him from 7am to 10pm on the day he had his lung removed.. he wasn't taken to theatre until 3pm that day, I was on my own until my daughter arrived at 4pm .

I watched him gp through so much, secondary cancer to the brain less than 3 months post op .. nothing could be done.

I never touched a single drop .not one that was until he passed 😔..

Hubby has no excuse now to carry on drinking, he has so much in his live to be thankful for .

Just carry on Lisa with what needs doing, it's hubby's choice to drink

Don't worry about the weight.. I have piled on 3 stone due to medication, lack of exercise due to pain

But im still here and alive ..

Stay positive

Linda x

Honestly, he is going to do what he is going to do. I would focus on yourself. That would be the best thing for you, your girls, and even him. Not saying not to support him but if he does not “want” to stop drinking, he won’t. He truly NEEDS to want it with all his heart or he won’t stop. Addiction is too powerful to just be able to stop with out massive plan/work

I would focus on your diet, maybe walking, just doing things you enjoy as well. Try to get into a positive mindset about the move and the great things that will come along with it. Ignore (the best you can) his negative comments and just keep in mind that’s his disease talking.

Best wishes.

mumof3girls
mumof3girls in reply to MLB_77

Very true, I really thought a switch had flicked and that he really wanted it now, but this weekends drinking seems to say he is not there yet. thank you, I think you are right x

Your husband is a typical alcoholic,selfish!! I can say that cause I’m a recovering alcoholic and when I was in addictive addiction all I cared about was myself and my next drink. Thank whoever that I had a moment of clarity and pack up drinking that petrol and now am on the mend and achieving things. Us alcoholics are stubborn bastards and the drink is so powerful over us. Fair play for sticking around,I hope you get all the support you need,and please take some time for yourself,self care is so important!! All the best!!😊

mumof3girls
mumof3girls in reply to deanw41

Well done you. Thank you for your advice, time to think of my own self care x

I really feel for you. My partner sounds so similar, the main difference being he isn't drinking now. He first went into hospital with ascites in Nov. He has been in bed apart from appointments ever since. Your description of his helping around the house is identical to mine from March to August last year, and the poor sleep and muttering. I have to say though that since they added the rifaximin to his lactulose and spiro last month that he has become more reasonable. It's only been a couple of weeks but he definitely has been a bit kinder to me. Try to keep him on it. My partner hates the lactulose and will miss some doses but takes it for the most part. He has to rush to the loo but it's clearing out the toxins. Also his ascites is keeping him in bed. He's off his feet as its too uncomfortable to sit and he gets out of breath walking and moving. Like you I feel so alone in all this. Please keep in mind your own sanity. Take bits of time out to recover. Lots of luck and love, K xx

Thank you and I am sorry that you have been going through the same. I will keep my fingers crossed that the Rifaximin helps my hubby too. My hubby has not taken the Lactulose today. I have planned to go for a walk tmrw to escape for a bit. I wish you luck with your hubby too, like you say its so hard somedays x

Trust5
Trust5Administrator

You are doing your absolute best for your husband, no one could ask more of you. Hard as it is you need to think of yourself too - the emotional and physical toll of trying to look after someone in your husbands situation is physically amd emotionally draining.

We are all thinking of you.

Take care

mumof3girls
mumof3girls in reply to Trust5

thank you, I think self care is the thing that I need to concentrate on

Gosh you really are goinf through it at the minute. I agree with all these wonderful ladies, they really do know their stuff. Plz start looking after yourself a lot more im not talking about the weight gain, that will come off you when you're so busy moving house and who hasn't put weight on in lockdown ? I hope you're family will help you with your move to your nèw home?. My GP told me many years ago that alcoholics are the most selfish that is possible to be. I think its time for you. In any way you can think off, rehab would be fantastic but from my experience with my husband that is far from easy. Imagine that you have come through cancer and i personally believe that you deserve a medal. Im always here if you ever needed a chat or just to talk to someone other than your family. Take every offer of help given to you with your house move. You're in my thoughts and my prayers every single night. God bless you very special lady..❤👏👏🙏🏽🙏🙏🏽⚘🌻❤

mumof3girls
mumof3girls in reply to Ally1966

Thank you. Yes I think I need to take better care of myself again, I was doing really well this before lockdown, so I need to get my head back around it again. Lets see what Boris has to say today but hopefully my family will be able to help us with our move.

Golly, so sorry to hear how tough things are. There just aren’t the same services available that there used to be for addiction. I know you said he’s a technophobe but does he use Facebook? Are you aware of OYNB group? Hope things improve for you.

mumof3girls
mumof3girls in reply to Familyof

no he does not use FB. what is OYNB? thanks

I think it's one year no booze... Or beer, as that rhymes better.. X

Familyof
Familyof in reply to mumof3girls

It stands for One Year no beer. But it leads to sobriety. There is a wide range of people on it from those who’ve lost everything and reached the end of the road to those who just want to give up and live an alcohol free life.

oneyearnobeer.com

Hi, having personally suffered with Hepatic encephalopathy, I would be happy to offer you an insight into this debilitating symptom of liver disease, if you feel that you don't understand some of your Hubby's behaviour. His drinking may also be a symptom of HE, as it makes you, make, extremely poor choices. Has he had a formal diagnosis of it, or is it just a suspicion at the moment?

I know it's difficult and it will give you a bad stomach, but the lactulose is the most important medication he can be taking at the moment, as it's not only a laxative, but it also flushes out the toxins that build up in the brain. Even though I wasn't eating much, my consultant said that I needed to be emptying my bowels at least 3 times a day to keep the HE under control. I didn't listen, because of the HE and almost lost my life to it.

Please contact me if you'd like to know more, I had a lot of similar behaviour to your hubby. Best of luck with everything xx

mumof3girls
mumof3girls in reply to TBSW

Thank you, I will be in touch soon

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