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British Liver Trust
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Decompensated liver disease

Hi I’m new to this site and struggling to cop e emotionally .My husband was diagnosed with decompensated liver disease in September following a massive osophagol bleed which left him in hospital for a month and icu for 5 days he has added complications he is type 2 diabetic and has peripheral arterial disease and neuropathy in his feet. He suffered encephalopathy following the bleed which was the scariest thing I have ever experienced. He doesn’t remember any of this and he thinks I make things up, his mobility is now poor and he seems to have no interest in anything. The hospital told me if he starts drinking he will die, I have tried everything taken him to counselling etc but I know he drinks every time I go out. I just don’t have the energy to confront him anymore it’s so exhausting I am holding down a full time job but I just can’t watch him all the time but feel like I am letting him down, any advice is greatly appreciated. He has always been a heavy drinker and I have tried numerous times to get him to stop. He is not drinking excessive amounts but the doctors have told us both that he shouldn’t drink anything at all.

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A very tough call, especially with Christmas coming. The power of denial combined with HE, he is killing himself, no doubt about it. I suggest that you discuss the issue with any of the Doctor’s you are comfortable with. With HE and as he is clearly a danger to himself, you can get him sectioned under the mental health act, there are various stages of sectioning. My heart goes out to you.

Mark

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Welcome to the forum although I am sorry that you find yourself doing this under such difficult circumstances. You will get a lot of support from this forum as many have been in the same situation as yourself. You have tried your best to help your husband, it is really important that you care for yourself too. There is an organisation called al-anon specifically for relatives/carers of someone such as your husband. They have a free helpline number 0800 0086 811

al-anonuk.org.uk/

We also have a free helpline: 0800 652 7330 Mon-Fri 10:00 - 14:45

regards

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I am not sure about Al-anon and would not openly recommend this as a place of support. My local Al-anon in Newcastle-under-Lyme is meant to be an open group, but non christian people are not welcome, and are asked to leave.

I would agree that they may well have helped many people over the years, and this is to be commended. But by allowing religion to become a factor as to weather someone should receive support or not only drives the problem away, and people may feel that they have nowhere else to turn.

The whole religious concept is hampering support for those who need it most. A lot of the local Punjabi communities are seeing a large increase in the amount of alcohol related condition. Because this brings shame upon the religion, a lot of these are dealt with in their community:

This only helps to segregate our society.

Both AA and Al-anon were once both regarded as being christian based support groups. They have since replaced the word "God" with the word "Spirit" and now class themselves as being a spiritual support group, this was to include those other people with different religious beliefs.

I will always respect a persons faith and religious beliefs, I can't help but feel that religion can sometimes segregate people, rather then bring them together. Alcohol support should be available for all, and not for a selected few.

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Sorry to hear you were asked to leave the A.A. group because they were Christian only. I am a member of A A. And the group I attend never discriminates against any religious background. It's not within the spirit of A.A. to be discriminatory. The basic A.A. text or bigbiik as it sometimes referred to states that the 12 step solution is open to all. I will list some quotes from the text to support this. Quite simply the group you were at is in my opinion a bad example of an A.A. group. As A.A. is essentially amatuer the quality of groups vary. If I were you I would consider contacting the u.k. general service board and complain about your treatment. Please see following quotes from the basic text.

Page 12. Bills story, my friend suggested "why don't you choose your own conception of God"

Page 46, we agnostics. "Much to our relief we discovered we did not need to consider another's conception of God. Our own conception, however inadequate, was sufficient to make an approach and to effect a contact with him.

Page 46, we found that God does not make too hard terms with those who seek him. To us the realm of the spirit is broad, roomy, all inclusive. Never exclusive or forbidding to those who earnestly seek. It is open we believe to all men.

Page 47 . . To effect our first conscious relation with God as we understood him.

Page 59. The twelve steps outlined... Christian or other god is not mentioned as a requirement for membership throughout the steps nor indeed the whole text. In fact it states the only requirement for membership is an sincere desire to give up drinking.

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Be faithful to that which exists within yourself.

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Hi sounds like a Muslim association to me I myself is a Muslim but I hate these organisations which discriminate people i on behalf of these groups as a Muslim I apologise dear honestly

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You don't have to apologise my friend. It's what's in your heart that matters at the end of the day.

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Woo, Ive been where you are. Most importantly look after yourself, you need to be incredibly strong, its a long tough road you're heading down. If I tell you my story it may help. Apologies to those of you who have read it all before .... it just goes to show how many of us are out there !!

I'll start with a bit of advice... may sound mercenary but you may be glad you did later on....

Cut off his supply. Pour any bottles and cans you have in the house down the sink. Install a safe for your cash. Close joint accounts open up in your name only. Get new cards with pins only and NOT contactless. Check his life insurance and any PPI on loans or cards, may be useful further down the line. Addicts can be very devious and you have to be steps ahead of them all the time. Its not their fault, they've become addicted to this poison and it wrecks everything about them.

Does he have family you can call on for practical help such as running kids around or for doctors visits etc just to lighten your load a little?

Following several big trips abroad with my son to watch cricket he said he was depressed and craved the sun again. I made a appointment for him to see the Dr. He went and came home with antidepressants. A few days later he told me the extractor fan in the bathroom was playing music and there were monkies in the trees.

Confused by this I made an appointment for me to see the same dr. I was told when he asked if he drank he had said no so prescribed antidepressants which mixed with alcohol is a lethal combination causing halucinations. He kept the appointment open for me to bring him back up and was sent to hospital. He was detoxed and came home.

After 2 bouts of pancreatitis and a return to work I recieved a call from his boss asking to speak to Andy. I said hes at work, he said he hadnt been in for several days.

He had been going out all day as though to work and "oh I just had a pint after work" to explain away the staggering to the house. I would hit the roof every evening but i was just a nag and he quit his job. His boss called to say his van stunk of booze and they had found hundreds of thise plastic rings which hold 6 packs together under the seats.

After a 2nd hospitalised detox, my husband turned yellow from top to toe. His once handsome face had gone and his head of lightly greying hair felt and looked like a brillo pad. Only in his 50's he more resembled his 85 year old Father. He called me to say i could collect him they had discharged him. He had in fact discharged himself having been told if you continue to drink you will die.

I then had to be sure I could afford to pay the mortgage all the bills feed my kids, thankfully the ppi on his credit card paid for that as he was too ill to work. I took on an extra job to run along side my business to ensure our security an keep life as normal for my kids with their after school activities. But my god it was tough. I was determined i was going to continue with my dancing and fitness, what a stress buster that is !

So having worked out the figures we woukd be ok. Until letters started coming from the bank, mortgage not paid, insufficient, funds, account over drawn.... whats going on??? Checked the statement £400 cash withdrawals. I confronted Andy he was addamant it was fraud, till i was calling the fraud dept when he addmitted it was him. He was using it to feed his stinking habit ! I was livid. Grabbed handfulls of black bags ripped opened his drawers fanatically stuffing all his belongings into them. Then the wardrobe.... jacket sleeves stuffed with empty cider cans and in his golf bag. Where i got the strength to lift it all and shove it all and him into my car i will never know. But i dumped everything on his mothers doorstep who was also in denial about his drinking and said, here, meet your son! And i left.

Life got easier. I secured all my finances as listed above and my kids and I were happy and secure.

In the meantime 1 to 1 councelling was set up at his mothers which was working and after several weeks i agreed to have him stay at weekends. Still dreadfully ill and weak I could see my old Andy returning, the kind, gentle caring one i had fallen in love with 20 years earlier. But i had to be strong, it was too early to take him back full time.

It was a weekend in May when he came upstairs in the early hours saying he was cold ( he had been sleeping downstairs on the sofa bed) and could he get in bed with me, so i let him in and held his hand. He said he knows he is going to die and didnt want to be cold and alone. So we laid there together in the darkness tears silently streaming down my face, listening to him sniffing then sniffing too much. I turned the light on, tge pillow was saturated in blood pouring uncontrollably from his nose. I called 999 he was rushed to hospital to the high dependancy unit then to ICU. I took my daughter to visit him a few days later and to this day i wish i hadn't. He was wearing an oxygen mask, there were tubes and wires everywhere, attached to him, varous machines and monitors. He tried to speak but blood spilt from his lips. My daughters eyes went wide like saucers, she screamed and turned away. What a way for a 10 year old to see her Dad. I left.

On the morning of 26th may I recieved that call.... come in asap. Andy was receiving massive amounts of oxygen with the effect of having your head out of a car window travelling at 80 miles per hour down a motorway. His liver had failed, his kidneys had failed and was looking at a double transplant but as he had only been dry for 3 months he couldnt even go on the list for another 3 months. And as I pointed out to these precious organs don't grow on trees and why would they waste them on someone with a self inflicted illness. The Dr smiled at me saying, we dont look at it that way, hes a very sick man and its our job to do our best to save him .... God bless our NHS ❤

I asked how long he had ?.... 3 to 36 hours. So I sat beside him holding and stroking his hand hating what he had done to himself and to us.

At 4pm I was told he was deteriorating further and that the kindest thing to do was to top up his dire morphine and let him go. I stood beside him while the nurse removed the mask saying he had done really well and she was going to let him lay down to get some sleep. He sat bolt upright, turned to me and gave me the biggest smile i hadnt seen in years, my Andy was back and now he was going to leave me forever? I kissed his forehead told him i loved him and sat beside him holding his hand while the nurse sat beside me with her arm around my waist. Together we watched his breaths and heartbeats diminish on the screen till all the lines ran straight.

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I've read your story before Laura but that still brought tears to my eyes. I'll never understand how someone can do that to themselves and their loved ones... At least you're in a better place now just as he is x

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Its just as tough to write again. But I'll keep writing it while wives and husbands and victims of this poison are in such a bad way they feel compelled to post their struggles on here xx

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Hi Laura, I was just think of the many times you've posted up your sad background and story.

I think your personal experience is very inspiring and is of immense benefit to those who find themselves in similar circumstances. Rather then have to type it out over and over, why not post a copy up onto the British Liver Trust's: britishlivertrust.org.uk/yo...

I personally think you mentioning your support of NACOA and a link to their child help page would be of great benefit to others. This way you need only copy the address link when you respond to someone, thus saving the time of having to type it all out again. It's just a thought.

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Thanks Richard. Yes i should. God the thought of typing it out again urgh..... could i screenshot it and post it? X

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Ive continued it below

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Oh laura what a heartbreaking story. You must be an incredibly strong woman to cope with all that and hold your family and business together. I hope that your family are all well and happy after such a harrowing time. Deb 💔

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I've only read parts of your story before, Laura - I can't believe the courage you had to go through all that. And the love you had for Andy and all the emotional turmoil at the time still shows even now. Thank you for sharing the whole story again.

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Oh Laura I am so sad 😭 you have been through so much. My heart just breaks. You are so incredibly brave. Like so many others here trying to pass on your help and great advice. This is an awesome site. But most of all the folks who do so much to help others are most awesome. Thank you so much for sharing.

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You went through my worst fear Laura, I'm so sorry. It's one thing to have gone through all that and still have Andy, but only to lose him was unbearable. You did more than anyone ever could have. I'm in the fortunate position that my husband (decompensated liver) has given up drinking in order to help himself. After I read your story, I read it to him. I told him that if he hadn't given up drinking I don't think I could have coped with him. It's such a terrible illness. I hope you are in happier times now with your children.

Cherie xx

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Sorry had to take a break..... Please share my experience with your, hubby, somewhere inside it may strike a chord and help.

Yes it was tough, especially for my son to lose his Dad at 17. He couldn't play cricket after he'd gone, he missed him terribly not being on the boundary. But they are thriving and happy although this time of year is harder with the dull days and his birhdays would have been on the 16th. Last year it really hit my son badly, now 25, and had to see a councellor which helped a great deal. My daughter now 19 has very little memory of him before he was ill, so we recently pulled out photographs of when were had some fabulous holidays abroad which was lovely, had a good laugh. As for me, I have a wonderful new husband who drinks milk and ribena, I have 3 grown up stepsons all of whom I adore. I am eternally grateful for this new chapter in my life.

As for Andy, he was my first real true love and best friend. There will always be a special place for him in my heart.

My resentment is with the alcohol industry... the poison which lured him into its clutches of addiction and ripped the life and soul from his being and tore the heart from my family.

Xx

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So pleased to read that you are in such a happy place now!!

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Thank you Laura I know in my heart that he will never give up the drink. I am fortunate in that he does not run up any debts and is so ill now can only drink small amounts. he never drinks in front of me as he knows it upsets me but I can’t help feeling that because of this he hides it and this makes it worse. Fortunately my children are now adults but my 20 year old son has seen everything and now finds it hard to even speak to his step dad they were always close. My son has had his own problems diagnosed with cancer at just 17 and it came back at 18 he spent his birthday on chemotherapy and he just can’t understand how his step dad can make himself so ill. I do understand how he feels and I really try not to take sides and just try to keep the peace. His daughter is angry at him and was initially very angry with me as I hid how bad his drinking was before he had the bleed. I don’t think she trusts me anymore should I tell her he’s drinking again or do I keep quiet. Her dad is the only family she has, although I would never desert her she feels she would be alone if something happens to her. I have told him this but it doesn’t seem to make any difference he just constantly denies he is drinking even though I have found the cans in the boot of the car

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Oh darling, your story is tragic and so so typical. Its the lies and deceit which hurts so much. I can only give advice as to how I dealt with my own situation but there is now a small, little known charity based in Bristol to help children of alcoholic parent/s NACOA 0800 358 3456. They can advise you on the best way to help your children through it, what to say, what not to say etc etc. If they don't answer, leave a message they WILL call you back. Please stay in touch, let us know how you get on.

Love and hugs

Laura xx

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Those people who are trying to come to terms with a persons addiction/disease find it very hard to understand and comprehend what is going on. The response to this is to often to be angry and bitter towards the person. This does not help anyone, and will only drive a wedge between them. All this takes is a little understand as to what is going on.

There are many reasons as to why a person develops a drinking problem. It may just start off as a initial routine, like calling in at the pub on the way home from work, It could be to try and use alcohol as a form of self-medication to disguise a traumatic event in someone's past. There are numerous reasons. However, once the alcohol becomes an addiction, then the brain is driving the desire to drink. The actual reason as to why a person drinks may well have become forgotten, or clouded over time, but the desire is now being driven by a mental illness.

This poor man is suffering, he knows full well what he is doing, he knows that he's killing himself and that his actions are hurting others. But his addiction is overruling rational thought. Adding guilt to the mix really doesn't help as this will only add fuel to the fire.

Rather than criticise this man for what he has now become, he really most likely could do with a dose of compassion and support. Try and get to understand his mind set and learn what it is that's driving his desire to drink. Offer empathy and help, even though you may feel this is of little help, at least he will feel valued and loved.

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Thanks Richard I don’t criticise I realised some time ago that it is an illness and not a choice it just seems that there is so little support out there for him I try to encourage and support the best I can but it is a long lonely journey it’s hard to discuss with friends and colleagues as people are always quick to judge. I will always be there for him x no matter what. It has helped just writing down how I feel thanks again to all

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You are not alone here, there are plenty of others in this site who have been down this road, and on both sides of the coin. You have people like myself who have had an issue with alcohol, and then you get people such as the lovely Laura who's been at the other end. Alcohol is a destroyer of lives, but sadly you don't need me to tell you this. I am truly sorry of the situation you now find yourself in.

Your right, about the support problem. There are two issues going on here, first you have the medical issues and the doctors can help make this, but there is also a need to treat the cause too. In this case, mental support is needed. There is sadly a lack of understand and empathy towards alcohol related conditions, and those who are going down this road through no fault of their own, are often ridiculed, and become very lonely people. They are frowned upon and look upon as a degenerate person. A little help, support and understand can pull all this back, What he really needs is to find a WILL. he needs to want to make a difference, to turn things around, he needs to make a difference to his life, but only he can do this. And he first needs to find that will to want to make it happen. Try and work with him, just simply say, "This is the problem, now what are we going to do to make it right?". This is turning a negative into a positive, it also shows that he is not alone and that you want to help him. This sort of positive thought will hopefully give him some encouragement to want to climb out of the dark place that he is in. Love and compassion are the name of the game here.

By the sound of it, he has a good family, and because his daughter is so mad at him, shows how much she really cares. She just needs to find away to turn those emotions of pain back into love and support.

Boy, I could go on talking like this for hours. But it's only fair to give others a chance to share their support and comments.

Above all, you are now not alone, you now have plenty of friends here.

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There is not a drinker or smoker for that matter that doesnt know what they need to do and most want to.

There is not a drinker or smoker that isn't low on self esteem.

They do not stop because they are afraid of letting someone down, the most of which is themselves.

I know...I have done both to huge excess.

The point is, he is trapped by himself alone. Best thing to do? I do not know, but praises for what he has done well is a start. Sounds like you are running against the clock, but ya never know.

I quit smoking right after Sept 11, 2001 and quit drinking around 10 years ago. Just stopped. No fanfare.

Good luck to him. Hug him.

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I've also been where you are. My story also has a sad ending. Unfortunately once the liver is decompensated it's irreversible and the medical advice we received was that giving up drinking now is probably not going to help. My husband didn't touch a drop of alcohol for the last year of his life. Looking back I realise how badly he actually did want to live to be able to do this despite the fact that I had left him at this point and he never really got over that. I was always there for him though and I lost count of the hospital admissions and all the times he was confused with the encephalopathy thinking a ship had docked in the grounds of the hospital and the doctors and nurses were all having sex in the hospital bed next to him! Honestly I heard it all in that year. The swelling was probably the worst thing and the hardest to keep under control.

In the end he was terminal for over a year I think because he had stopped drinking, and it was a slow horrible decline. I can't help thinking if we had let him drink (deep down he was just waiting for the family to give him the go ahead) I think it would have been quicker. Sadly our 3 children had to watch him become almost childlike and totally dependent on us. I lost count of the times we were told he was dying only for him to rally round again but in the end his body just shut down and I was relieved when his suffering ended. I think our children have learnt a very harsh lesson about the effects of alcohol and what it can do to you.

On another note his insurance policy did not pay up either due to him not declaring problems with his liver from 10 years earlier when we took the policy out. The fact that he knew that long ago and never said anything was an even bigger shock.

This is our second Christmas without him and I still cry over the wasted life and the loss of my children's dad.

I have a new partner I met whilst we were separated but wil never forget my husband of 30 years.

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So so sad, yet another family with the same story, same sad conclusion and still struggling with the loss.

Many bereavement " councellors" will say, " A loss doesnt affect the children for long, they are very resilient"

Sorry that is rubbish, there is no time limit to grief for anyone. For us we support each other at anytime its needed. Dont let anyone say " they should be over it by now"

Xx

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Hi. I'm an alcoholic. Sorry to hear of your husband's condition. I had been a drinker for 40 years and had tried various treatments with scant success. Counseling just doesn't do it for certain types of hardened drinkers. This July I went to alcoholics anonymous. I haven't had a single drink since. Pretty amazing after 40 years of problematic alcohol abuse. Those of us in A.A. will tell you it's the only solution to alcoholism. I agree. At my group we have tried time after time to stop but none of us could stop and stay stopped. We have tried our g.p.'s, counselling. Drug and alcohol support groups, psycho analysis, and nothing worked for us. But A.A. does. Ask your g.p. or online or yellow pages etc for local groups and contact them. Another short term solution may be a drug called Antabuse available on prescription. It works by giving the drinker a very unpleasant reaction to alcohol if taken on top of the medication. Of course you would simply have to ensure your husband actually took the tablet each day. Otherwise he probably would simply tell you he's taken it. Bin it, and continue drinking. It would certainly be beneficial to get a copy of the A.A. basic text and read that yourself. It will enlightening and may be the best move you and your husband ever make concerning alcohol and his liver condition. Life saving. When someone gets told by his or her doctor. To continue drinking will kill you and nevertheless they continue, then they are probably an alcoholic. You will find great support from A.A. for you as well as your husband and most important of all, a real solution to alcoholism or problem drinking. One last point, it's worth asking your g.p. or anyone you might know about the various groups in your area because as A,A, is non professional the quality of each group can vary. Get a good one. Contact me back if there is ANYTHING you want to ask. Take care.

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Whatever works for the individual, AA worked for you. Not for quite of a few others though, so please get off your soapbox. Loudhailer Anonymous?

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Hi. I'm really sorry to hear about your situation. It is often underestimated how important the role of carer / family member is in managing their own needs. As well as having cirrhosis, my brother was the main carer for me for around 2 years. I also am a social worker so see this regularly. Please, please seek some help. Your GP is a good point of contact if they are understanding your support needs. You also are eligible for a carers assessment under the Care Act. Carers often go undetected but if he is struggling with his Mental Health then please do contact your local Mental Health Team. They should run a crisis team and some areas have specialist dual diagnosis teams.

I really wish you all the very best and hope for a good outcome.

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It is a horrific situation and must be heart breaking for you to see him destroying himself.

I hope he can see sense and stop drinking.

I was in his situation in October 2016. I did stop drinking, probably because I was petrified of losing my family more than anything.

It was too late for my liver as I had to have a transplant last October.

I am extremely lucky as I am doing really well.

What I am trying to say it is never too late to stop. Even if he needs a transplant, there is a future to look forward to.

I hope Laura's story can encourage him to break this cycle of destruction

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SRE3 and Laura009: Laura, I have heard your situation before as you know but it made me cry again as it was so similar to Steve. SRE3, I went down that road too. The HE was so, so scary and Steve never remembered what he'd said and done.

Steve passed away in April this year with multiple organ failure and infections. I was with him at the end.

Steve had actually given up drink for 9 months prior to his death, he had a consultation for a liver transplant but they said he was too weak and probably wouldn't make it off the table. They suggested palliative care which devastated us.

I was so proud of him for finally giving up but it was too late.

It is a very cruel disease and, although I have my happy memories and lots of photos of a happy, smiling Steve, every night when I close my eyes I see the image of him as he was at the end. Like Laura's Andy, he looked like an old man, a shadow of his former 'rugby build' self.

Steve was only 57. We had only had 8 years together, we should have had many more. This is also the first Christmas without him.

I have been having counselling, am told this is 'complicated grief' as I am grieving for the lovely man he was, there is also anger because he contributed to his early demise and there is also guilt. Could I have done more to stop him drinking? I don't know but I think I will always have this guilt.

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❤❤

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Hi it is the guilt I am also struggling with part of me thinks I should have done more to stop him drinking in the past and now I feel guilty for not having the courage to confront him when I know he has had a drink, it’s only the odd can or 2 when I’m not in the house but I know this will gradually increase as I’ve been down the road before. My heart goes out to you I think unless you have been down this route is hard to understand why we feel guilty and helpless. People don’t understand why we feel responsible but when you are in a relationship with someone you care for I don’t know how you can stop caring and feeling guilty is part of that I’m sure. Take care of yourself xx

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I’m really sorry to hear you are doing all on your own but we are hear dear with pls don’t feel lonely forget about that al noun I would suggest ask your gp to arrange Carer from your council to sit with your hubby while you go to work or just have a break for yourself as you need a break or you get frustration , stress all sort of emotional break down . Trust me since last 12 years I’m on anti depressants as my life was on a roller coaster and I was on my own . Wish you a lovely Christmas and a prosperous new year xxx

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