ALD Stage 3 or 4

[bjfewell]

Just found this site... maybe someone can help me.

My husband is an alcoholic with left sided portal hypertension, a spleen that is grossly enlarged, ascites, mild HE, his diet is a joke and he refuses to take lactulose. Still, he continues to drink heavily from morning till night; he is 66 yrs old. He is NOT a candidate for ANY surgery or procedures; surgeon and Hepatologist agree he'd most likely bleed to death. I've accepted that, after yrs of hard work to finally retire, this is how our lives together will end. I realize that everyone is different but given his lifestyle can anyone help me guess how much time we may have left together.

I'm already in grief counseling... I wasn't going to make it alone. Thanks

[Catfishjumpin]

You could ask his doctor how long he can live like this. Its wise you have yourself in grief counseling. Goid luck.

[bjfewell in reply to Catfishjumpin]

I have but neither of his specialist want to reply. I understand that Drs must be so careful these days.

Thanks for your support😘

[Catfishjumpin in reply to bjfewell]

It's almost impossible to say too. I am sorry you have to watch this. It's very sad. Best wishes

[Hidden]

Hi

I really hope the counselling helps you .....such an awful thing for you to witness , please look after yourself x

[bjfewell in reply to Hidden]

I do because I must. I was so fortunate to find my therapist... she's a perfect fit and that's hard to find.

I watched his father go through this; so did he but he's chosen block it out. It's amazing how some people prefer to ignore the obvious. Thanks for your support.

[briccolone]

Sorry to say this but it sounds like liver failure territory which he may pull through and that may be the frightner that will turn it round. Of course he may not. Am assuming other courses of action i.e. A. A have been tried or is that a non starter? Best wishes

[bjfewell in reply to briccolone]

Last January I gave him the choice of in-patient or finding somewhere else to live; I could no longer watch him drink himself to death. At that time he was in pain and choose treatment. He stayed only 3 or 4 wks but did stay sober for 3 months or so. He also attended AA meetings. Naturally, when he started drinking again, it was heavier than ever. It has continued to increase ever since. He's now spending well over $400.00 a month on liquor and beer. Obviously, it's hurting us financially. Near the end his father began vomiting huge amounts of blood. He lived a few months longer, slipped into a coma and died. I'm waiting for him to do the same. Thanks for your comments.

[briccolone in reply to bjfewell]

Very sadly your story is not unique, many people on this site have been through similar experiences. Stay strong.

[Millie09]

So sorry that you are having to deal with this . No dr can really pin point a time of death , as it can be anytime . I was like that when my dad had secondary brain cancer , caring for him and watching him decline in front of me was awful , you have tried all that you can do . I think it's time you had a support network put tn to place . My best wishes. Sending love ,light and peace ❤️ Linda X

[bjfewell in reply to Millie09]

Thanks, Linda. I have been getting my 'support group' in place for quite some time. I worked for my father-in-law his last few years so I knew what was ahead. The day before he died I decided to spend the night in the hospital with him because no one should die alone (if possible). His wife, a nurse, went home and his son went to work. They both chose to be oblivious. That I'll never understand. What makes this situation even more crazy is that I've been sober for years so I know it can be done but first you must admit you have a problem and care that you're hurting the ones that love you. Our youngest son has been sober for two years.

I hate it that I've lost respect for my husband... I met him when I was only fourteen.

[Millie09 in reply to bjfewell]

Your welcome ! Sorry late reply ! Been one of them days . Aww I'm sorry to hear that , I was with my dad every single day and night when he was in palliative care with Brain cancer , hardest thing I have ever done so I know how you are feeling . Well done you ! And your son , yes the fist step is admitting you have a problem , bit sometimes they need to really hit rock bottom to wake them up ! I know as I have been there and now have the scars as proof . I think you are maybe more angry with him then hating him , it's Alll frustrating for you and your son to have to watch him . Sometimes we have to give them tough love .. Maybe that might give him a wake up call ? Go stay with a relative maybe ?? Let me know Hun . Keep in touch . Il follow you so I can send you private message xxx Linda

[Paulineunderstand]

Is it possible you to have a break? you sound very angry and frustrated and some time out might help. would respite care work for him again? it sounds like he's drinking because he feels it's hopeless.

[bjfewell in reply to Paulineunderstand]

I think you're right about him feeling it's hopeless but it's his poor choices that have made this situation hopeless. You're also right that I AM angry and frustrated. We're both retired and had planned to travel... I'd even purchased an RV so he could rest while I drove if necessary. I feel he has robbed me of all that.

[Paulineunderstand in reply to bjfewell]

And he's not well enough for a trip in the RV?

[Geffy22]

So glad you're already in counselling - you may need more as your husbands illness progresses.

My experience is Docs always over estimate things. When I found out my hubby was palliative - we had been told he would recover - the doc told him 2 weeks and told me to get his family down right away. I was in shock, held onto the 2 weeks comment and spent hours getting stuff for him to be comfy and pain meds - he passed away the following day. I wish I'd spent those hours with him, but I chose to believe the doc, who in hindsight was trying to tell me he might not last long.

A friend told me her hubby was given 4 months, but her friend who specialises in this area said, 6 weeks. She was spot on.

I do hope he stops drinking for both your sakes. Sadly those who drink are often not treated as well as they could be because they need to take the first step and stop drinking.

Bless you both, good luck, I hope you get some answers from the docs xxx

[bjfewell in reply to Geffy22]

You're so right about the way a dr treats an active alcoholic but I can understand why. They have so many patients who are trying, why waste their time on someone that isn't.

[Geffy22 in reply to bjfewell]

I honestly dont believe they should do this - people aren't addicted because it's their 'fault' but often because they need something to help them. I believe in future we will properly recognise this as a mental health issue and treat the cause not the symptoms, but until then those who need most help, actually get the least. Some people do make changes - if we understood why / how we might better those who aren't able to help themselves. I worry that our world lacks the compassion we need to move our species on.... Sorry deep post x

[h0b0]

My heart goes out to you. Look after yourself 'cos your husband has obviously made his choice. You have done all you can & should be proud.xx

[bjfewell in reply to h0b0]

You are spot on... he chose alcohol over everything else. Like I said, I'm a recovering alcoholic... I know first hand how hard it is to quit. He was given all the tools but laid them aside and picked up the bottle. It's hard NOT to be bitter. Partners of alcoholic's say, 'Another man/woman I could fight against but I can't fight against the bottle'. Truer words were never spoken!

[Lperica10]

Hi so sorry to hear this as I just lost my dad at 63 in October to ESLD. Wanted to tell you my experience to answer your question - June 2012 my dad had an alcohol related accident and was in a coma for weeks he was told if he continued to drink he would die in a year. Well he did (continue to drink). And fastforward to June 2016 where we saw an OBVIOUS decline in his health.. (he quit June 1). But he had ascites, swelling in legs/feet, memory issues, did not have the cognitive ability to write his bills handle appts/prescriptions, etc. could barely walk, bathroom accidents, HE, low blood pressure all the time, starting to show signs of kidneys not working well. In July he was given less than 6 mos. (I do think if he was seen earlier like may or June they would have gave him less than 6 mos too as he was VERY ill). He slowly slowly declined in front of my eyes over the last few mos of his life and passed oct 12. That was just my experience. My dad was in terribly bad shape by the time he quit and starting changing his diet, seeing doctors/specialists, and taking meds consistently. You are doing the smart thing seeking counseling. I was so upset and anxious during the whole decline and now I still can't believe he's not here. Please ask me ANYTHING and I will answer. Hang in there.

[bjfewell in reply to Lperica10]

You made a point that some aren't aware of...an alcoholic's body reaches a point where quitting is more dangerous than drinking. That's where my husband was after rehab. Once he started again, the mind/body said 'Never again will I be without this!' and it meant it.

You also pointed out that once they reach ESLD they usually go pretty quick. That's a real blessing because it's an ugly way to die.

[bjfewell]

Thanks to all who have taken the time to reply; your words and stories are such a support to me. I wish I had found this site earlier but so glad I found it at all.

I'm not going anywhere...just wanted to leave this comment of gratitude! I believe there's nothing you can't survive if you surround yourself with positive karma 😘💕

[Nhaamor51]

It's awful planning something for so long and then when it comes time to finally reach your goal it is snatched away. You have so many things that you are grieving for besides the life you and your husband planned. I totally understand Alcoholism and the awful consequences it injects into all family members. Your husband is dealing with so much loss. The loss of his health, dreams, life, family etc. Its a wonder more people who are not alcoholics don't start drinking over all the heartache and stress it causes. Your husband being the alcoholic he is has always coped with life by drinking and to expect that he would stop after the doctor told him this news I feel is unrealistic. They need to be given new coping mechanisms in order to process all the ways that his life will change. Some people can get that news and that is all it takes to change everything in their lives. They quit drinking, start eating healthy and incorporate exercise into their lives. They truly surprise everyone that used to know them. A lot of times that's all it takes to save enough of their liver to live many more happy years. We all love to hear of these stories and hold these people up as examples for everyone to aspire to. Unfortunately some of us might not be able to rise to that level. Does this then make these people unworthy of continued love and support. It is so hard to witness our spouses self destruction. I would be the first one to tell you that tough love is the way to go. Make him tow the line or he's out no middle ground, no gray areas. Well I don't know if older is wiser or just tired but when someone is faced with their own death it can do some crazy things to their mind. Some people honestly think "why stop now". It's like the 60 year old who can't breath and is told they will die in less than a year if they don't stop smoking. Most of us would think that that decision is a no brainer but that person refuses to stop. They sit in their bed hooked up to their oxygen and will continue to smoke until they die. I applaud you for seeking help from whoever or where ever you can find it. You will both need it. I don't think anyone can give you a timeline on someone elses life expectancy. The doctors can look at the person and his lab work and make an educated guess but thats all it will be. I don't know if he has discussed what it is that he thinks the doctors are telling him. It could be he thinks no matter what he does he cannot change this outcome. We all know how hard it is to actually hear what a doctor is saying especially when it relates to this awful fate. Has he talked to you about what he thinks is going to be his reality if he does and doesn't stop drinking. I don't know how long your husband has been dealing with this but I do know that the one thing we all have is hope. Hope that he sees that your future together is more important to him than the next bottle of beer. I will pray for a miracle for you and your husband. I will pray that you have the strength you will need to be able to provide him with the love and understanding that he needs while navigating his final journey. I will pray that you know that you will still have time to live your dreams and peace in the knowledge that you did everything possible for your partner.