End stage liver disease and kidneys failing

It has been a LONG journey with my dad to say the least. He has been an alcoholic for 15 plus years and has survived MANY near death/alcohol related accidents. His last drink was June 1 and his health has declined greatly over the past few months. (It's been declining but this is way worse) It's like watching someone die... Literally. He is 63 looks and moves like a 93 yr old. June and July was full of doctors visits, specialists, 911 calls, hospital stays, back and forth home & hospital, and A LOT of emotion. He is the most stubborn person and every time insisted on going home even though he was in no condition. (He lives alone). In July he was told hospice is his only option. He declined. Went home, fell, broke his ribs, went to a rehabilitation center and discharged himself against medical advice (can't tell you how many times he's done this). So 2 weeks ago today he called me asking me to call 911. He insisted they take him to a different hospital for a second opinion. He's been in there since. He is no longer producing any urine and they said dialysis is needed. I'm surprised at this bc the last hospital said dialysis isn't even an option. Without dialysis at this stage he would live 1-3 weeks. With it, a few months. After having a big meeting he said he wants to try it. So here we go... Now I have to find him somewhere to live. This is the longest saddest journey ever. It is watching a man deteriorate. Not to mention the hepatic encephalopathy! This has been by far the worst. The forgetting, the mood swings, the anger, the insults, the agitation, I could go on! He just said no one is ever here for me. When I've been nothing but there for 4 mos daily. I manage his health, his home, his bills, his life. I've given up my own life and I don't know how much longer I can... All for a man who chose this. So sad. I'd wish this on no one.

22 Replies

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  • This is very sad to read. I am truly sorry you are burdened with his dying physical and mental health. This is typical of alcoholism. Its an ugly disease to say the least and such burdens as yours fall on the shoulders of the innocent. You must be somewhere around the age of 40. I am 65 with a 40 year old son and a 38 year old daugter. I have had liver cancer more than 2 years. Its from Hep c and alcoholism. My father was an alcoholic but he did not die of liver cancer until he was 80. He had hospice. His death was full of nobility. He pulled himself together and really knew a lot of peace in his last two months. Without a transplant, I will not live much longer. I just cycled 35 miles in the last four days though. Soon, I have an Ablation in hopes of shrinking the tumor size. Its another shot in the dark but one way or another, we all live till we die. You need some help. Tell him, this is not all about him. Tell him he has to have hospice. Refuse to do everything for him. I take care of myself. I have for many years. Your anger and disappointment are justified but neither will serve you well. Focus on how to get out from under all this stress. I wish you luck and peace. You are you, you are not him. Make yourself strong. Its on him if he prefers feeling sorry for himself. It sounds a bit like he has developed encepathology but really only the doctors can determine that.

  • Thank you for your response. That is great advice and I am sorry about your situation too. I will be 32 in October.... I have sisters but they washed their hands of him. Said he did this to him self. He has no one but me so I've stuck around. I wish I would have stopped helping him a while ago. And he does have encephalopathy, has for some time now. In July he was given less than 6 mos. so he truly needs to accept hospice at this point. You sound like you get around pretty well for your illness. That's great for you. Do you have a relationship with your son and daughter? Thanks again and well wishes to you.

  • Hi, yes, I really like the human beings my children are. They are good people. I cannot say that about my brother and sister though nor my mother. They made fun of daddy when he was dying, I had to fight to get him proper care. I almost had to do it myself and I was on a treatment fir my hep c, one of the old hard ones that lasts for a year. I wish you good luck. I hope we hear from you again.

  • Catfishjumpin You mentioned that you had HCC as a result of HCV and alcoholism. I presume the alcohol is no longer as issue, I must ask though, did you clear the Hep c and if so how long after clearing it did you develop cirrhosis or was it around the same time as you cleared the Hep c (if you did that is) and how long after abstaining and or clearing the virus was it before the HCC showed up on your scans, I was diagnosed with hep c 10 years ago had two rounds of interferon ribivarin treatments , did not respond, then 18 months ago I went on the new non interferon treatment called Harvoni which does not focus on immune system response to the virus but rather focuses on killing the virus by inhibiting the ribovarin protein coat of the viral shell. Anyway, I am clear for over a year now but the damage apparently had been done and now have Plug scale A compensated cirrhosis coupled with fatty liver . I am in good health considering all of the above and am worried sick that I may develop HCC , the latest scan only showed fibrosis and fat deposits. I was told that I had a 25 % chance of liver failure, so I anxious to learn more about your case so that I can prepare myself for any eventuality. I am 60 years old and drank 6-8 light beers each day up until my initial diagnosis for hep c , I was an IV drug user in my youth and now I am paying the price. Just need to know. Please if you can share this with me on this post please do otherwise perhaps you could email me. My email address is: peter.town4@gmail.com.

    Thanking you in advance

    sincerely-Peter

    PS. best wishes on your transplant I think you should go for it. You have nothing to lose as you sound as if you have little options left. You are a true inspiration and font of information for those of us who are like you scared out of our wits. Blessings keep up the fight.

  • I like to post here for all so everyone can see if there is something in my posts they can use. I use everyone's posts here that way.

    I drank 28-54, all those adult years. I drank 2 years after I had been diagnosed for hep c. I drank 5 to 8 full drinks every night, beer or wine but I could drink 4 margaritas and a bottle of wine. I could even walk and take the subways home in New York City after drinking that much and I did it alone. I felt like death the next morning but I was great at faking it. I am female. I am part Cherokee. My father could drink like that. He lived till 80 but died of liver cancer. I am decompensated. Its great you are only compensated. I have been sober 12 years. 2004 interferon and ribavarin for a year. 2014 new treatments, Solvaldi & Olysio. Olysio was a trial drug. Until these drugs I had been considered to ill to treat. Treatments would kill me. Olysio was a light sensitive chemical. It likely was full of mercury. I am a professional photographer or was so thats how I know that. If we went into sunlight, we burned so badly we were taken off treatment. I had to cycle at night for those 3 months. I was the only one in the group that developed cancer. There is proof that in a percentage of patients on second treatments that will develop cancer. On treatment, I immediately developed cancer. I still finished the TX. I might have developed cancer anyway, 43 years is a long time with the virs eating my liver, it literally eats it, thus the scarring which is known as cirrhosis. I have lived cycling hard with this cancer for more than 2 years. I force blood and oxygen thru my cirrhosis. I encorage you to begin exercising, anything you like but it should pump oxygen and blood. Keep to an excellent diet. I sincerely believe you can quit worrying about cancer or your liver getting worse. The virus is dead, you are not drinking. Get a good diet and exercise. You are not doing a thing to make your cirrhosis worse. Its likely to remain compensated. So far, you are lucky lucky lucky. Keep it up. Happy to answer any questions.

  • Oh my dear, I'm in a very similar situation to you. It does help to know your feelings are shared. As carers we just have to bury the feelings of anger and resentment towards the person who actually put himself in this place. But because it's buried, it doesn't go away. I do know. My husbands kidneys failed in same situation. He was put on dialysis as his Creatanine was 647 and GFR 7! So in extremis He actually crashed on the session but came back from the brink All I can tell you is that now, 12 weeks after this final dialysis, that his kidneys stabilised and latest bloods (weekly) are steadying at around Creatanine 189-240 and GFR between 26 and 36 at best All your other descriptions are exactly as I'm finding My urgent advice is to get onto your GP He will get Community Nurses and indeed wonderful Macmillan nurses involved They will also give YOU support to help you cope I have been offered counselling and wonderful home massage therapy These people understand our frustration, anger in indeed bewilderment. It's also a huge reassurance just to know they're at the end of a phone 24/7 We've no idea how long our steady patch will last and if the kidneys will keep this up.... I do so hope you get the support you need to help Dad and this may have helped you a little let us know how you get on

  • god bless you and i hope your dads recovery continues. miralces can happen when a peson stops drinking. i wish you well. love grace xoxoxo

  • god bless you for looking after your father like this. i found the post from lynsangster very encouraging. this must be killing you and you need to look after yourself too as it will be taking its toll on you in many ways. have you heard of alanon. its for relatives of alcoholics. maybe you could try and get some help there. they can even come and visit you. i wish you well. love grace xoxoxo

  • I'm 16 years clean, 6 years sober... your dad sounds like he is in a lot of pain. I heard in an aa meeting.."alcohol was my drug of no-choice.."

    it certainly feels like this. Set your boundaries, you MUST do this. Get along to alanon for support. You are not responsible for the choices your dad has made. You are a good and loving daughter but is there anyone there to help you ?

  • No one. My sisters have washed their hands of him and are mad I won't do the same. He has 2 brothers, one out of state, and 1 that my dad shuts out. So just me.

  • My daughter just had to bury her dad 2 weeks ago. He was homeless and living in a tree. Meth addict. 52 years old.

    It's hard but you need to ask for help from social workers, hospice, hospitals, and seriously get to an alanon meeting. People there will get it. You willl relate to what the other people are going through too.

    The hardest thing is that right now you must put yourself first.. or there will be no one to look after your father.

    Chin up buttercup- you can get through this.

    Xx

  • Thank you! I know that's what I have to do. I am, for the first time in forever getting help from a social worker- at this new hospital. The old hospital would just send my dad home (bc he wouldn't sign for hospice or anything). I am sorry about your daughters father.

  • How lucky he is to have your support but I remember being told that I was ' enabling ' my partner because ,over time, that support becomes expected and not always acknowledged or appreciated -- hope that does not sound harsh but the reality is that the only person who can make a change to habitual behaviour is your dad 😳

    Has he been referred to a Councillor or any other Organisations

  • No that doesn't sound harsh at all. I wish I would have done that a while ago... Not helped as much.. But now there's no point bc he is dying... So I will be there for him. He never changed his whole life (sadly).

  • Lperica10,

    When appropriate I tell my story ( sorry for all of you who have heard it before ! )

    You say he is 63 and is in a dire condition right now. Well if it helps, I was discharged home on my 62nd birthday following a very successful a liver transplant.

    One year earlier I was diagnosed with cirrhosis that didnt respond at all to ceasing alcohol. I then rapidly deteriated begining with spontaneous bacterial peritonitis with sepsis due to ascites. Then followed 80 nights in hospital over 2015, mostly with hepatic encephalopathy. All complicated by a subsequent insulin dependent diabetes. Those close to me thought I was close to the end and I look at photos from then and I understand why.

    Thankfully the medics did not give up and i was refered to a transplant centre.

    He may be extremely weak and ill but do not give up, he needs you to have faith in his ability to get well again.

    hope my story helped a bit.

    Jim

  • i hope you continue to keep well jim thanks for sharing your story. love grace xoxoxo

  • Thanks Jim that does help. Its hard but I never gave up yet. And it's been 15 + years. I wonder why this hospital said he could try dialysis and the other hospital said the only option is hospice.

  • yes i wonder too.???

  • Hi Lperica, how are you doing today? im sorry to hear about the things you are going through with your dad,im going through the same thing with my husband he is 48 but looks like a 90 yr old, he cant walk without being in so much pain in his legs and feet because they are so swollen,,,,, There is nothing you can do to make him better or stay in the hospital etc, unfortunatly alcoholics are stubborn people, the alcohol changes a persons personality and it makes everything all about them, and it is hard work taking care of an alcoholic.This group is an amazing group to be part of and i for one am greatful for the group,Catfish is an inspiration and i love the words she says to encourage others even though she isnt well herself.:). Just wish that they would make it a school lesson to teach children the dangers of alcohol.......I was talking with a freinds aunty who is 92 and she was asking me about my childhood ,it wasnt a pleasent one to say the least but you know she made me realise something, because of my childhood i became a bitter and very angered person hating most people etc, and after last night i realised that i went through what i did as a child and update because its made me the strong person i am today, and had i not gone through what i had then i dont think i would be strong enough to take care of my husband who is on the road to distruction.Your dad also sounds like he has what they call alcohol alzheimer's, because alcohol affects the brain cells and kills them off, your dad isnt being spiteful when he is saying no one is there for him, i think he generally believes no one is there for him, he wont remember you visiting him, you know you are there for him, just try to focus on that,my husband is the same, he will ask me a question about something etc on his phone and i will give him the answer then he will ask me the same thing again, proberly 10 times during the night.....Dont be supprised if one day he doesnt recognise you (hopfully that wont be the case)..Its a sad and terrible sickness and addiction alcoholism. Here if ever you want to talk or vent off .:).

  • Thank you I was thinking the same thing about a lesson in schools!!! I work in a school. People have no idea how it doesn't have to kill you immediately and it can be a long slow drawn out deteriorating death. Painful not only for the person but family too. Sometimes more for family! Right now he is so confused... Calling me from the hospital saying he's ready to go. He calls at all hours because he mixes up night and day and days/times. I wish I could do more but I work full time and have my own family. I am there as much as I can be. There is no one else but me because he treated my sisters like crap (me too only I forgave) they could only forgive so much.

  • It is very hard to know some times what to do for the best and like you said so hard when they are confused. I wish your sisters would feel the same way you do, they will kick themselves when something happens to him. I know this from experience, my mum was an alcoholic (she didnt bring me up but i found her when i was 14 and lived with her for a while but she couldnt handle a child let alone an unruly one) she gave up drink in her 50s but she was also a chain smoker, her body had had enough and she passed away at the age of 72 2015, she used to say to me that she couldnt understand why she was so ill and yet she stopped drinking, i said mum you cant abuse your body the way you have and do and expect a healthy body, her organs all failed at once and she died in bed (she died scared). We hadnt spoken in years because of the way she treated me and when she died i regretted not contacting her sooner, i didnt have what my siblings had good memories and i keep saying if only id done this,if only i had contacted her and forgiven her, but its too late now, the only way i got to say im sorry and i forgive you mum was while she was laid to rest and obviously there was no point.My point is they need to see your dad before its too late for them to,,is there any way you can persude them to see him even if its just the once before he dies? You are a brilliant daughter and are doing all you can to help your dad, as exausting as it is. Are you in the states or the uk? How is your dad now?

  • Thank you for your kind words! Sorry to hear about your mom, my dad did the same thing for the longest time about saying he doesn't understand why he is so ill/tired/weak/etc and why can't the doctors "fix" him, etc. I don't know if they are just saying that or truly believe that. He's been sober since June 1 and is just NOW after 15 plus years of alcoholism accepting that he did this to himself. I am in the states, are you in the uk? As far as how he is now... He tried dialysis for the first time this week, it did seem to help (a little bit) with the confusion. We had a meeting yesterday with the social worker in his hospital room and discussed where he will live. Up until now he fought everyone about being at his home (even discharging himself from the one physical rehabilitation center he was in this August) but now that it's no longer a choice- due to dialysis 3 times a week and his fighting an infection. He can no longer do day to day living- walking, bathroom, laundry, bathing, etc. and hasn't been able to for 4 months. I hope he stays cooperative because it can go anyway sometimes.

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