The ugly face of end stage liver disease - dealing with my 46yo sister
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Thread Starter
Join Date: Aug 2013
Location: Porto Alegre
Posts: 18
The ugly face of end stage liver disease - dealing with my 46yo sister
Hello everyone
It's been quite a while since I last been here. In my last post, around 2013, I was doing some soulsearching about whether or not to fullfill the "role" of care giver to my alcoholic sister.
Here's the background:
She is a successful 46 years old public servant. She's had end stage liver disease for some time now (6 years or so) with all imaginable symptoms: esophageal bleedings, ascites, jaundice and encephalopaty. She's had endoscopies to stop life-threatening bleedings at least 6 times. She's had something called TIPS inserted into her liver to help decrease pressure. She's spent weeks and weeks in intensive care along the years. Last time was in november 2014, for an episode of severe encephalopathy and delirious behaviour.
With all that, you'd imagine no one would be able to move around to get alcohol, but she does find energy to go and buy herself beers.
Her son is now 17 years old and has been living with her since I decided to spend a year in France for my doctoral studies. It was a hard decision, but my being here wasn't helping at that point. I truly wanted her to die already. I'm visiting now, after 6 months, and things are progressing quickly.
She has been having severe episodes of memory loss and drowsiness, which most certainly are caused by encephalopathy and, of course, alcohol. She sleeps 15 hours a day. She can't get to the toilet in time and has bowel movements all over the bathroom, and can't clean it well. She bleeds all over the sheets. She smells like death. And still, she buys beers, but not food. Actually, she pretty much mantains the appearance of "normalcy" (despite the yellow eyes, the weight loss, the slurred speech and that disturbing smell).
She was in rehab in december and january and had nurses with her for a while at her apartment. But if she was left alone for 5 minutes, she would go and buy beers (on credit, because she had no access to her money at that point). Everyone seems to have given up on her, I know I have.
When I see her I can hardly look at her. It's a mix of anger with pitty and guilt and repulsion. That's what an alcoholic looks like in the final stages. At the end, their own families want them dead, because it's hopeless and unbearable.
That's what happens when you don't quit.
For those who have the chance to get away from an alcoholic: do so, without a second of doubt or guilt. Just run away.
I would if I could. I've been away for a few months and was able to taste life without the alcoholic drama, and it was a much needed break.
Thank you for reading my rant. I wish you all well.
B.
Edit: typos and clarification.
It's been quite a while since I last been here. In my last post, around 2013, I was doing some soulsearching about whether or not to fullfill the "role" of care giver to my alcoholic sister.
Here's the background:
She is a successful 46 years old public servant. She's had end stage liver disease for some time now (6 years or so) with all imaginable symptoms: esophageal bleedings, ascites, jaundice and encephalopaty. She's had endoscopies to stop life-threatening bleedings at least 6 times. She's had something called TIPS inserted into her liver to help decrease pressure. She's spent weeks and weeks in intensive care along the years. Last time was in november 2014, for an episode of severe encephalopathy and delirious behaviour.
With all that, you'd imagine no one would be able to move around to get alcohol, but she does find energy to go and buy herself beers.
Her son is now 17 years old and has been living with her since I decided to spend a year in France for my doctoral studies. It was a hard decision, but my being here wasn't helping at that point. I truly wanted her to die already. I'm visiting now, after 6 months, and things are progressing quickly.
She has been having severe episodes of memory loss and drowsiness, which most certainly are caused by encephalopathy and, of course, alcohol. She sleeps 15 hours a day. She can't get to the toilet in time and has bowel movements all over the bathroom, and can't clean it well. She bleeds all over the sheets. She smells like death. And still, she buys beers, but not food. Actually, she pretty much mantains the appearance of "normalcy" (despite the yellow eyes, the weight loss, the slurred speech and that disturbing smell).
She was in rehab in december and january and had nurses with her for a while at her apartment. But if she was left alone for 5 minutes, she would go and buy beers (on credit, because she had no access to her money at that point). Everyone seems to have given up on her, I know I have.
When I see her I can hardly look at her. It's a mix of anger with pitty and guilt and repulsion. That's what an alcoholic looks like in the final stages. At the end, their own families want them dead, because it's hopeless and unbearable.
That's what happens when you don't quit.
For those who have the chance to get away from an alcoholic: do so, without a second of doubt or guilt. Just run away.
I would if I could. I've been away for a few months and was able to taste life without the alcoholic drama, and it was a much needed break.
Thank you for reading my rant. I wish you all well.
B.
Edit: typos and clarification.
Member
Join Date: Nov 2013
Location: USA
Posts: 2,393
Wow. What a picture you paint of those that choose not to get help. I've heard of the hallucinations during liver failure, too. The entire bloodstream is poisoned including the brain and they are pretty much crazy.
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Join Date: Feb 2013
Location: W Washington
Posts: 11,589
how very sad. thre are some that are beyond the reach of any type of medical or forced intervention. her son is not tho, HE needs help. this is far too much for a child of 17 to deal with......
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Thread Starter
Join Date: Aug 2013
Location: Porto Alegre
Posts: 18
Thank you all for the replies.
My nephew has a room in my son's apartment (close to mine too), but he decided to stay with my sister, at least for now. He told me yesterday he wants to stay there until he can't take it anymore. I reminded him he has a place to stay, that he's not alone, that it's ok if he decides to move out. I'll be back home for good in November, so we'll see how things will have progressed by then.
After all these years - more than two decades now - of witnessing my sister's alcoholism, what I think is we are all a little sick too as a family. Maybe more than a little. There's no way to go through this without getting scarred. Like, for instance, I get anxiety and panic attacks often when the phone rings, and I have horrible nightmares. All those times when she needed to go to hospital with bleedings and craziness I was the one that took her, so if the phone rings after a certain time of day... it triggers those feelings.
Anyway... Thank you all for reading.
Edit: typos.
My nephew has a room in my son's apartment (close to mine too), but he decided to stay with my sister, at least for now. He told me yesterday he wants to stay there until he can't take it anymore. I reminded him he has a place to stay, that he's not alone, that it's ok if he decides to move out. I'll be back home for good in November, so we'll see how things will have progressed by then.
After all these years - more than two decades now - of witnessing my sister's alcoholism, what I think is we are all a little sick too as a family. Maybe more than a little. There's no way to go through this without getting scarred. Like, for instance, I get anxiety and panic attacks often when the phone rings, and I have horrible nightmares. All those times when she needed to go to hospital with bleedings and craziness I was the one that took her, so if the phone rings after a certain time of day... it triggers those feelings.
Anyway... Thank you all for reading.
Edit: typos.
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Thread Starter
Join Date: Aug 2013
Location: Porto Alegre
Posts: 18
I'll try and post some updates, it may be helpful to someone in a similar situation to mine.
Today, one of my sister's neighbor called my mother to warn her that my sister was trying to get in the car but couldn't, and was walking around the building looking very confused. My mother then called me. And I got sucked right back in to the black whole.
We went over my sister's, and from what we saw she's in a encephalopathic episode. Last time she had this we took her to the hospital (last october), and it was a nightmare. She ended up tied up to the bed, in deep delirium, for 4 days. And stayed in the hospital for 4 weeks, with 24 hours family/care giver supervision. The only medication they gave her was lactulone, so I don't see why we shoud take her to the hospital this time around just to give her lactulone. We can give her lactulone at home, and everyone will be more comfortable. We have enough horrors to witness already.
After more than TEN hospital runs lasting longer than 20 days I simply cannot stand hospitals anymore. And rehab clinics... I won't even get into that.
She is end stage. She is dying. There's nothing we can do but give her comfort and, well, beers. At this point, getting into withdrawal would just add more misery to the situation.
We called back the nurse that looked after her in january/february, she's staying with my sister until monday, then we see how things are. She's allowed to give my sister 3 cans of beer a day at most. From what we've seen, she's been having at least 10 a day. Maybe more.
My nephew decided to stay home with her. We bought enough food for quite some time and other things he needed, and told him it's totally fine if he can't take it and wants to leave.
There are other issues we'll need to deal with, her finances are in complete chaos. But that's for later.
Thank you all.
(And sorry for grammar mistakes, English is not my first language.)
B.
Today, one of my sister's neighbor called my mother to warn her that my sister was trying to get in the car but couldn't, and was walking around the building looking very confused. My mother then called me. And I got sucked right back in to the black whole.
We went over my sister's, and from what we saw she's in a encephalopathic episode. Last time she had this we took her to the hospital (last october), and it was a nightmare. She ended up tied up to the bed, in deep delirium, for 4 days. And stayed in the hospital for 4 weeks, with 24 hours family/care giver supervision. The only medication they gave her was lactulone, so I don't see why we shoud take her to the hospital this time around just to give her lactulone. We can give her lactulone at home, and everyone will be more comfortable. We have enough horrors to witness already.
After more than TEN hospital runs lasting longer than 20 days I simply cannot stand hospitals anymore. And rehab clinics... I won't even get into that.
She is end stage. She is dying. There's nothing we can do but give her comfort and, well, beers. At this point, getting into withdrawal would just add more misery to the situation.
We called back the nurse that looked after her in january/february, she's staying with my sister until monday, then we see how things are. She's allowed to give my sister 3 cans of beer a day at most. From what we've seen, she's been having at least 10 a day. Maybe more.
My nephew decided to stay home with her. We bought enough food for quite some time and other things he needed, and told him it's totally fine if he can't take it and wants to leave.
There are other issues we'll need to deal with, her finances are in complete chaos. But that's for later.
Thank you all.
(And sorry for grammar mistakes, English is not my first language.)
B.
Member
Join Date: May 2010
Posts: 1,254
I sympathize with an alkie/addict here. Beside intoxication signs the body odor is much more pronounced and/or pugent than in the past.
My guess is the alkie here is near liver failure already exhibiting the signs like nasty body odor and frequently running the bathroom. They too will buy beer but no food. Never diagnosed doesn't consider themselves an alkie/addict. But they are getting drunk/high quicker and more frequently acting like a fall down slushy drunk with a glazed eye stare.
My guess is that they think the steroids they're doing will offset the effects of alcohol and other drugs. But those same steroids might be stressing the liver as well.
Good Luck
My guess is the alkie here is near liver failure already exhibiting the signs like nasty body odor and frequently running the bathroom. They too will buy beer but no food. Never diagnosed doesn't consider themselves an alkie/addict. But they are getting drunk/high quicker and more frequently acting like a fall down slushy drunk with a glazed eye stare.
My guess is that they think the steroids they're doing will offset the effects of alcohol and other drugs. But those same steroids might be stressing the liver as well.
Good Luck
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Join Date: Mar 2013
Posts: 150
Wow I'm very sorry you're going through this and especially it being such a long term process. You stated that it could help others in similar situations. I posted earlier today about my brothers situation. What you stated rang loud and clear.....you feel pity for them and love them, but they're disgusting to be around. I told my brother I.don't want to keep going in his room (I call it the cess pit) cause its nasty. He throws up and sometimes pees right where he sits. Attempts to spit his "hockers" in the can but frequently misses. The last few.relapses they said his liver would be done with a cpl more relapses. Although things looked grim for him last time, for 5 months he's been doing good, looked healthy, good appetite. Revealed last week that he's been drinking about 3 weeks (makes 4 now) so I'm hoping he didn't do a whole lot more damage. It's amazing how they keep running to that bottle, isn't it?
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Thread Starter
Join Date: Aug 2013
Location: Porto Alegre
Posts: 18
Thank you all for the replies.
Readysteady, I read your post and totally relate...
Updates:
Yesterday, I arranged a few things to try and report her legally incompetent, I don't know exactly what the expression is English. Anyway, we need access to her bank account and things like that. We also need to negotiate debts and credit cards and many many things. Not even her psychiatrist she was paying (I spoke with said psychiatrist today and she didn't know my sister was drinking.. I mean.. Really?). The chaos is complete in her life. Total.
I won't be here until october, so my nephew and my son will be dealing with the burocracy. It sucks, but it is what it is.
Today, after a couple of days on lactulone, she seems to be coming out of the encephalopathy. I had to go over to her place to pay the nurse, so I had a chance to talk to my sister. She's lucid, still confused, but lucid enough to have a conversation.
I said flat out that no one is going to rehabs and hospitals, and that she won't be away from beers. The point that was non-negotiable was selling the car. That's going to happen no matter what she says.
She seems ok with the arrangement for now, because her life turns around beers and there are no threats to her access to beers at this point. She doesn't know she'll be reported legally incompetent, no reason to tell her that now.
And as final news, the gastroenterologist mentioned her last scans (january) showed some tumors (in her stomach or something). She's been avoiding getting them biopsied.
So there you have it, the whole picture of hell.
Thank you all, take care.
B.
Readysteady, I read your post and totally relate...
Updates:
Yesterday, I arranged a few things to try and report her legally incompetent, I don't know exactly what the expression is English. Anyway, we need access to her bank account and things like that. We also need to negotiate debts and credit cards and many many things. Not even her psychiatrist she was paying (I spoke with said psychiatrist today and she didn't know my sister was drinking.. I mean.. Really?). The chaos is complete in her life. Total.
I won't be here until october, so my nephew and my son will be dealing with the burocracy. It sucks, but it is what it is.
Today, after a couple of days on lactulone, she seems to be coming out of the encephalopathy. I had to go over to her place to pay the nurse, so I had a chance to talk to my sister. She's lucid, still confused, but lucid enough to have a conversation.
I said flat out that no one is going to rehabs and hospitals, and that she won't be away from beers. The point that was non-negotiable was selling the car. That's going to happen no matter what she says.
She seems ok with the arrangement for now, because her life turns around beers and there are no threats to her access to beers at this point. She doesn't know she'll be reported legally incompetent, no reason to tell her that now.
And as final news, the gastroenterologist mentioned her last scans (january) showed some tumors (in her stomach or something). She's been avoiding getting them biopsied.
So there you have it, the whole picture of hell.
Thank you all, take care.
B.
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Join Date: Jan 2015
Location: West Coast
Posts: 774
My step dad died of liver cancer...
Started with polyps. Then chemo. Then remission. Then more chemo. Then the beginning of his failing organs. Then drained fluid, which just came back.
Finally, on hospice he was given 3 months.
It took less than a week.
His whole body became yellow as everything just shut down.
God that was hard to watch!!!!
My family never hated him, however. My personal anger is simply for the outcome of this terrible disease! Alcoholic behavior is one thing... but death is among the top worst possibilities of alcoholism in my opinion.
Started with polyps. Then chemo. Then remission. Then more chemo. Then the beginning of his failing organs. Then drained fluid, which just came back.
Finally, on hospice he was given 3 months.
It took less than a week.
His whole body became yellow as everything just shut down.
God that was hard to watch!!!!
My family never hated him, however. My personal anger is simply for the outcome of this terrible disease! Alcoholic behavior is one thing... but death is among the top worst possibilities of alcoholism in my opinion.
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Thread Starter
Join Date: Aug 2013
Location: Porto Alegre
Posts: 18
Update
Dear friends, my sister died of liver failure on 17th, after two weeks of excruciating ups and downs in the hospital. It was the saddest experience of my life.
My nephew, who's been through hell and has become an orphan (his father died 10 years ago), was already a son of mine in my heart. Now he is my son. My husband and (other) son also opened their arms to him, he will now have a chance of a "normal" life with us, filled with love and healing.
But there are no happy endings after alcoholism.
I thank you all for your support.
My nephew, who's been through hell and has become an orphan (his father died 10 years ago), was already a son of mine in my heart. Now he is my son. My husband and (other) son also opened their arms to him, he will now have a chance of a "normal" life with us, filled with love and healing.
But there are no happy endings after alcoholism.
I thank you all for your support.
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Join Date: Jun 2010
Location: UK
Posts: 2,937
I'm so sorry for your loss.
I'm hoping there were some good times to remember with her and that alcohol has not clouded every memory,
I will keep your 'new son' in my prayers.
How wonderful he has a family like you now.
Wishing you the best xx
I'm hoping there were some good times to remember with her and that alcohol has not clouded every memory,
I will keep your 'new son' in my prayers.
How wonderful he has a family like you now.
Wishing you the best xx
under new management
Join Date: Jun 2015
Location: Calgary, Alberta
Posts: 2,339
(((Biancafp))) I am so very sorry for your loss and for the horrors you experienced along the way. Your nephew is very blessed to have you in his life.
So true, there is no happy ending with alcohol.
So true, there is no happy ending with alcohol.
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