Aa
Dying Mother with ESLD
Hi All,
I have read so many posts and it's all so very upsetting. Like many of you out there I to am looking for some kind of advice so I can prepare for what is to come.
Mum has been an alcoholic for all of my life. She has progressed through the stages of liver disease like a text book, she has had many a chance to stop drinking but was unable to fight the demons I guess.
A quick history of the last 2 years. Went into complete liver failure in October 2012 was hospitalised for 46 days and after we were told that she wouldn't make it, some how, she got through it and was able to come home. After 4 weeks she began drinking again and has never stopped.
She has been in and out of hospital with so many issues. She has cirrhosis and what look like is at the very end stage. For the last 3 months she has been bed ridden unable to walk, she barely eats anything, is incontinent, sleeps 80-90% of the day, barely talks, has edema, is jaundice(Not bright yellow though), she has esophageal varices, lung issues, takes a million and 1 prescription drugs and continues to drink(because her partner is an alcoholic as well). She seems swollen to me and refuses medical treatment of any kind. She is confused, can't hear very well anymore and stares alot. She is 58.
What I would like to try and know is how long can this go on for. It is so hard to watch her deteriorate like this, how much worse is it going to get for her. What should I do, when do you know when death is close...
Any advice would be appreciated.
Thanks
I have read so many posts and it's all so very upsetting. Like many of you out there I to am looking for some kind of advice so I can prepare for what is to come.
Mum has been an alcoholic for all of my life. She has progressed through the stages of liver disease like a text book, she has had many a chance to stop drinking but was unable to fight the demons I guess.
A quick history of the last 2 years. Went into complete liver failure in October 2012 was hospitalised for 46 days and after we were told that she wouldn't make it, some how, she got through it and was able to come home. After 4 weeks she began drinking again and has never stopped.
She has been in and out of hospital with so many issues. She has cirrhosis and what look like is at the very end stage. For the last 3 months she has been bed ridden unable to walk, she barely eats anything, is incontinent, sleeps 80-90% of the day, barely talks, has edema, is jaundice(Not bright yellow though), she has esophageal varices, lung issues, takes a million and 1 prescription drugs and continues to drink(because her partner is an alcoholic as well). She seems swollen to me and refuses medical treatment of any kind. She is confused, can't hear very well anymore and stares alot. She is 58.
What I would like to try and know is how long can this go on for. It is so hard to watch her deteriorate like this, how much worse is it going to get for her. What should I do, when do you know when death is close...
Any advice would be appreciated.
Thanks
I put you'll in my prayers I know how it is I pray my kids don't have to go trew this with me
So sorry for your loss. She is in a better place. She was blessed having you for a nephew. .
Nan
Nan
did you auntie have any up days where she was talking okay just a little confused?...
mine is still having these days...
mine is still having these days...
Well my Auntie pass away in her sleep on May 28! She's in a better place now
My Aunt is in Hospice dealing with this now! She raise me from a little girl and now I'm seeing her pass away slowly! I visit her everday and plus go to my two jobs. It so hard to for me! I cry all the time! Every time I visit her I talk to her like she's right there sit beside me. I always hope to see her for another day and God has been good to me! Please keep in prayer I need help
Hello Ashlie35,
Hope you're doing okay? It must have been very hard growing up when your mom was drinking, because I know that the liver disease is just the end result - for years beforehand you're coping with the alcoholism, which is terribly hard in itself, so it feels like a double blow to come to terms with.
It is such a confusing time isn't it? Such a mixture of emotions. I've just come back from a visit to my mother's grave, it's still very strange to see her name on the grave marker.
I found out yesterday that another woman I know (only in her 50s), is on life support right now in the hospital, again due to alcohol. But the word going around was that she had cancer. The denial of alcoholism continues.
I can't understand how a product that hurts people so much is so freely and cheaply available. It's very sad.
I also feel for any family going through the same thing. You're right, nobody should have to go through this, it all seems so pointless, a terrible waste.
Hope you're doing okay? It must have been very hard growing up when your mom was drinking, because I know that the liver disease is just the end result - for years beforehand you're coping with the alcoholism, which is terribly hard in itself, so it feels like a double blow to come to terms with.
It is such a confusing time isn't it? Such a mixture of emotions. I've just come back from a visit to my mother's grave, it's still very strange to see her name on the grave marker.
I found out yesterday that another woman I know (only in her 50s), is on life support right now in the hospital, again due to alcohol. But the word going around was that she had cancer. The denial of alcoholism continues.
I can't understand how a product that hurts people so much is so freely and cheaply available. It's very sad.
I also feel for any family going through the same thing. You're right, nobody should have to go through this, it all seems so pointless, a terrible waste.
Waitingforspring, it is so sad to see how many people are dealing with the same thing I just did. It is horrifying. My mother was 64 also. I can only remember her being my MOM up until maybe age 10. After that, it was unlikely to see her sober unless she was working. Sooo in a sense, I lost my mom way before I actually DID, this was just the finality of it. I have been looking at old photos this week as well, and I love remembering her for who she was before alcohol stole her away. I am angry, sad, relieved, and all kinds of other things, it takes quite a while to process that. I am sorry for your loss, too. I try to shut out the memories of her being in ICU and then hospice, because it's so hard to see her that way. Nobody should go through something like this, EVER.
Hello Ashlie35, I'm so sorry about your Mum, I meant to come back here sooner but life's been all over the place lately, as it has been for you too I think.
I turned 40 years old last week, and I've been doing a lot of soul-searching. My mother died aged 64, but in reality she died as a person 15 years ago, when the alcoholism took over so badly that it changed her forever. In a way I feel that it prepared me for letting go of her now. I feel very sad for her because of all the things she'll miss out on. But I also feel relieved that she is free of the torment. I've been looking at old family photos and re-capturing the old life she had and the true person she was over a 64 year life, not just the skeletal alcoholic she became. I so wished she could have been a mother to me but it was so painful to have to accept that wasn't going to happen - alcoholism took her away.
I live in Ireland - a country with a massive alcohol abuse problem. Alcoholic Liver disease is on the rise, and there's not enough awareness of it. Also, I think a lot more could be done in relation to provision of palliative care for those with ESLD. It is provided, but often too late. I'm also not confident that 12-step addiction treatment is providing any benefits. I'd like to see a more medical or scientific approach. The alcohol industry is far too powerful in Ireland.
So I really feel like getting involved in a campaign to raise awareness. Maybe that's how I can help other people going through the same thing. Too many people are dying needlessly.
But back to the here and now....I am here and listening if you ever want to talk, I (and many others) know how painful it is to lose someone this way. Thanks so much to everyone here for all your kind messages, it really does help. I have posted before on the grief and loss section, must have a visit there again - this is a great resource for people going through a terrible time.
Ashlie35, I went to a counsellor years ago to help me deal with my mother's drinking - It really helped, because it's not easy to come to terms with something like this on your own. My father is still an alcoholic and we will always live with the fear of him starting to drink again.
At least now I don't have to live in fear of the dreaded phone call to tell me my mother has had an accident or burned the house down. Now I like to think of her as the loving mother she was when I was young, free from the torment of alcoholism and the pain of ESLD.
I'll be thinking of you and Elizabeth, and if you'd ever like to chat you're more than welcome :) take care :)
I turned 40 years old last week, and I've been doing a lot of soul-searching. My mother died aged 64, but in reality she died as a person 15 years ago, when the alcoholism took over so badly that it changed her forever. In a way I feel that it prepared me for letting go of her now. I feel very sad for her because of all the things she'll miss out on. But I also feel relieved that she is free of the torment. I've been looking at old family photos and re-capturing the old life she had and the true person she was over a 64 year life, not just the skeletal alcoholic she became. I so wished she could have been a mother to me but it was so painful to have to accept that wasn't going to happen - alcoholism took her away.
I live in Ireland - a country with a massive alcohol abuse problem. Alcoholic Liver disease is on the rise, and there's not enough awareness of it. Also, I think a lot more could be done in relation to provision of palliative care for those with ESLD. It is provided, but often too late. I'm also not confident that 12-step addiction treatment is providing any benefits. I'd like to see a more medical or scientific approach. The alcohol industry is far too powerful in Ireland.
So I really feel like getting involved in a campaign to raise awareness. Maybe that's how I can help other people going through the same thing. Too many people are dying needlessly.
But back to the here and now....I am here and listening if you ever want to talk, I (and many others) know how painful it is to lose someone this way. Thanks so much to everyone here for all your kind messages, it really does help. I have posted before on the grief and loss section, must have a visit there again - this is a great resource for people going through a terrible time.
Ashlie35, I went to a counsellor years ago to help me deal with my mother's drinking - It really helped, because it's not easy to come to terms with something like this on your own. My father is still an alcoholic and we will always live with the fear of him starting to drink again.
At least now I don't have to live in fear of the dreaded phone call to tell me my mother has had an accident or burned the house down. Now I like to think of her as the loving mother she was when I was young, free from the torment of alcoholism and the pain of ESLD.
I'll be thinking of you and Elizabeth, and if you'd ever like to chat you're more than welcome :) take care :)
I am so sorry to hear about the loss of your mom Ashlie35. Some of us on this forum have lost friends and loved ones to ESLD. I can't imagine what it would be like to have gone through these last few months with your mom and seeing her suffer. I guess the only thing that might help is knowing that she's no longer suffering. My thoughts and prayers are with you. Perhaps the three of you in this thread could reach out to one another via notes or private messages and support one another. Randy's idea of looking at the thread above in the Gief-Loss forum is a good one too. Or you can keep this thread going and provide support for each other here on this thread.
Best wishes to all 3 of you.
Advocate1955
Best wishes to all 3 of you.
Advocate1955
COMMUNITY LEADER
I am so sorry to everyone posting who has lost a loved one to ESLD. I don't know if it will help but MedHelp offers a Greif & Loss community.
http://www.medhelp.org/forums/Grief--Loss/show/12
In the community there is a thread that was started July 2007.
http://www.medhelp.org/posts/Grief--Loss/Liver-Failure-and-cirrhosis-death--anyone-go-through-this/show/40139
Hundreds of posts later this thread stays very active and it might be a good place to talk to others that have gone through a similar situation.
I hope it can somehow help you during this sad time. Take care,
Randy
http://www.medhelp.org/forums/Grief--Loss/show/12
In the community there is a thread that was started July 2007.
http://www.medhelp.org/posts/Grief--Loss/Liver-Failure-and-cirrhosis-death--anyone-go-through-this/show/40139
Hundreds of posts later this thread stays very active and it might be a good place to talk to others that have gone through a similar situation.
I hope it can somehow help you during this sad time. Take care,
Randy
It is so difficult, nan535. I don't know what to do without my MOM. I'm 35, and it still hurts just as much today as it would have had I been younger. No one should lose their mother this way.
You all three have my deepest sympathy on the loss of your mothers. Know that they are in a better place, no longer suffering.
May you all treasure and remember the happy times. It is my hope that it will help you to move on in your own lives.
Big hug,
Nan
May you all treasure and remember the happy times. It is my hope that it will help you to move on in your own lives.
Big hug,
Nan
I just lost my mother last Friday night to ESLD. It was a very, very long two months in ICU, a rehab hospital, and finally hospice. I feel relieved, somewhat, because she doesn't hurt anymore, but I am still mad about it. I could have had my mom for another 20 years, and now I have been robbed of that. It's a hard thing to grasp. Would love to talk to someone that knows about ESLD and can relate to what I and so many others have been through.
We are so sorry to hear about the loss of your mom, waitigforspring2014. I know this has been a very stressful and painful few months for you, caring for your mom through ESLD. As you said, she's free of her demons and her guilt, and her suffering is over. I know there's nothing we can say that will really help ease your pain right now, but we are here for you. I will pray for comfort for you and your family.
Advocate1955
Advocate1955
I am so sorry to hear that your mum past away. Like you said the only comfort is she is free from her demons.
It's a very difficult time and I do know how you are feeling. There isn't anything anyone can say to make you feel better right now, it's a journey you will take on your own.
My thoughts and prayers are with you and your family and if you ever need to talk please write to us.
It's a tough time, take care of yourself too.
Elizabeth
It's a very difficult time and I do know how you are feeling. There isn't anything anyone can say to make you feel better right now, it's a journey you will take on your own.
My thoughts and prayers are with you and your family and if you ever need to talk please write to us.
It's a tough time, take care of yourself too.
Elizabeth
My mother passed away last night, she's free of the demons, the addiction & the guilt. It was a long struggle in ICU for her, 5 days - it was very tough.
I know that one of the big questions people ask is how long do people survive with ESLD? In our case, my mother lasted 3 months after first going to hospital, 2 months since we received the bad news. The doctor was almost exactly right.
I feel now that the real person she was, the person I remember from childhood is now free again, and I'm glad her suffering is over but very sad for those of us left behind :(
I know that one of the big questions people ask is how long do people survive with ESLD? In our case, my mother lasted 3 months after first going to hospital, 2 months since we received the bad news. The doctor was almost exactly right.
I feel now that the real person she was, the person I remember from childhood is now free again, and I'm glad her suffering is over but very sad for those of us left behind :(
That's great you've started grief counselling Elizabeth, I hope it brings some comfort to you & helps you come to terms with it all.
From what you describe above, my mother is very similar to yours in terms of the drinking - it does seem as though there's no turning back once the alcoholism reaches a certain tipping point, and they will keep drinking because they know no other way. It has a tight grip. Very sad.
I can confirm that my mother is definitely drinking unfortunately. She's fallen a few times in the last few days and she's fairly incontinent. Her stools are very dark and she has pain from what she says is hemorrhoids.
It would make anyone wonder how much abuse a body can take and still keep going.
From what you describe above, my mother is very similar to yours in terms of the drinking - it does seem as though there's no turning back once the alcoholism reaches a certain tipping point, and they will keep drinking because they know no other way. It has a tight grip. Very sad.
I can confirm that my mother is definitely drinking unfortunately. She's fallen a few times in the last few days and she's fairly incontinent. Her stools are very dark and she has pain from what she says is hemorrhoids.
It would make anyone wonder how much abuse a body can take and still keep going.
It's hard to know at times if it is the Alcohol or the encephalopathy. It was the same with mum, I would swear blind she was drinking when she wasn't, and then at times you know she was so it's really hard to know what's going on.
Mum always lied about the drinking, it's part of the disease I guess. No matter what you say or do, in the end it is up to them to want to stop. It's when it gets to this stage is when it is difficult for them to stop and any chance of a "Normal" life is next to nothing. It becomes all they know and rely on. Very sad to watch from the outside.
If there are any specific questions you want to ask, I can only try to answer from my experience with mum. I know I wanted to know every detail possible. I just wanted to try and prepare myself.
As for me now, I started grief counselling this week, so it was a good chance for me to get a lot out. it's a good thing. So steps forward to a new beginning.
Mum always lied about the drinking, it's part of the disease I guess. No matter what you say or do, in the end it is up to them to want to stop. It's when it gets to this stage is when it is difficult for them to stop and any chance of a "Normal" life is next to nothing. It becomes all they know and rely on. Very sad to watch from the outside.
If there are any specific questions you want to ask, I can only try to answer from my experience with mum. I know I wanted to know every detail possible. I just wanted to try and prepare myself.
As for me now, I started grief counselling this week, so it was a good chance for me to get a lot out. it's a good thing. So steps forward to a new beginning.
Good to hear from you Elizabeth, you're right it will take time I suppose but it must be very hard to try get back to "normality" after everything you've been through. Are your sisters and family around, have you plenty of support?
You're right about it being very drawn out and up and down, that's very difficult.
It's funny you should ask whether she's drinking at the moment, because would you believe we're very suspicious for the past few days that she may have been drinking. She's showing all the old signs of being drunk and my father is driving her to the supermarket (which is where she always bought her drink before). But we can't prove it. We're actually wondering if it's the encephalopathy coming back, or is she really drinking? She's not so much confused as acting drunk.
She's extremely defensive about it & adamant that she's not drinking but she and my father have lied to us in the past.
I think her brain has been affected by alcohol anyway so her mental state isn't brilliant but I am wondering if this is another symptom of the disease?
For now I suppose we'll take it as it comes but if anyone has any advice I'd appreciate it :)
You're right about it being very drawn out and up and down, that's very difficult.
It's funny you should ask whether she's drinking at the moment, because would you believe we're very suspicious for the past few days that she may have been drinking. She's showing all the old signs of being drunk and my father is driving her to the supermarket (which is where she always bought her drink before). But we can't prove it. We're actually wondering if it's the encephalopathy coming back, or is she really drinking? She's not so much confused as acting drunk.
She's extremely defensive about it & adamant that she's not drinking but she and my father have lied to us in the past.
I think her brain has been affected by alcohol anyway so her mental state isn't brilliant but I am wondering if this is another symptom of the disease?
For now I suppose we'll take it as it comes but if anyone has any advice I'd appreciate it :)
Hi waitingforspring2014,
I have my good days and my bad days. It's hard to accept that she is really gone. I know it's going to take time, but it's really hard at the moment.
I'm glad to hear that your mum is on a good spike. Hopefully she can maintain it. I can't remember is you said or not, is she still drinking?
It is very up and down and drawn out. I wouldn't wish it upon anyone.
Hope you are coping ok. Stay strong and from my experience, son't anticipate anything, you'll make yourself sick with worry. Take it as it comes.
I have my good days and my bad days. It's hard to accept that she is really gone. I know it's going to take time, but it's really hard at the moment.
I'm glad to hear that your mum is on a good spike. Hopefully she can maintain it. I can't remember is you said or not, is she still drinking?
It is very up and down and drawn out. I wouldn't wish it upon anyone.
Hope you are coping ok. Stay strong and from my experience, son't anticipate anything, you'll make yourself sick with worry. Take it as it comes.
If you're still reading this Elizabeth, I hope you're doing okay. How are you coping at the moment? I'm still keeping you in my thoughts.
My mother seems to have bounced back since her last visit to hospital. She's now able to walk again. It's amazing to me just how up and down this disease is. It swings so wildly between one extreme and another.
I'm just waiting now again to see if she takes another downturn at home. Or can she pull through? Is this wishful thinking?
My mother seems to have bounced back since her last visit to hospital. She's now able to walk again. It's amazing to me just how up and down this disease is. It swings so wildly between one extreme and another.
I'm just waiting now again to see if she takes another downturn at home. Or can she pull through? Is this wishful thinking?
I have a slight correction, the reason she was hospitalised was a low blood count of 6. I think she's been passing blood etc.
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