Please can you help? Father has End Stage Liver Disease

Our Father has Alcoholic Liver Disease, Hep B and Hep C due to over 20 years of heroin and alcohol abuse. Three months ago he developed Gross Ascites and went to hospital for the paracentesis procedure. After a few days he felt better and against advice, discharged himself. He was prescribed diuretics, laxatives, co-codamol, vitamin B and also given a course of Fragmin for a Deep Vein Thrombosis in his left leg.

My sister and I met with his GP and then took him to see the Liver Specialist Nurse at Gloucester Royal Hospital. He was booked on for weekly outpatient paracentesis treatment, which require blood tests at the hospital the day before to ensure his blood would clot properly for the paracentesis to take place (also advised not to take the Fragmin for 24 hours before the paracentesis). I believe he is experiencing confusion and early stage dementia which means keeping appointments and remembering to take a complicated set of medications impossible.

Social services have told us that he is not likely to be under their jurisdiction as he is at liberty to make 'poor life decisions'. They suggested we contact the Gloucestershire Drugs and Alcohol Project who ought assign him a case worker to help with day to day appointments etc. Still waiting to hear about this. We have had some help from the district nurse team. They came over to give an incontinence assessment (he has also developed bowel incontinence). He refused this help. We also booked Hospital Transport for the weekly paracentesis appointment but they didn't show up.

It has been incredibly difficult to arrange anything. We thought we'd got it all in place and then he decided to go and live in London with out Grandfather. This did not work out as he is often rude and disruptive. He returned to Gloucester and we tried to put all the appointments back in place. Then he took off to London again last week. My Grandfather is 86 and can't cope with the incontinence. He managed to persuade him to go into hospital but he discharged himself after two nights. They argued and he stormed off. The hospital called the next day and said he'd been picked up by the police and bought in. He had been drinking. The next day he discharged himself again and my Grandfather called the police who took him back to hospital. They tested his mental capacity and it appears he is sane and they arranged Hospital Transport to his home in Gloucester.

I met him at the house and he was very lethargic and quite confused. I also found evidence of Heroin usage while I was there.

I just got a call from my Grandfather and he has turned up in London again despite being asked not to go back there until he is well.

So, after three months of trying to put things in place for his care we keep going around in circles. We understand that ultimately it's his choice but my Grandfather can't cope. We both have families and jobs and live in different cities. We are also aware that he is unlikely to get better.

Can anyone offer any advice or have a similar experience of trying to provide care for someone seemingly hell bent on this path of self destruction?

12 Replies

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  • so sorry to hear about your father, has he ever went to alcoholic anonymous. i attend aa meetings and if i need to go anywhere they are the first at my door, they understand addiction, do you know of any addiction units or psyciactric units who could take him and monitor him. although i think the system as let you down, speak firmly to your fathers GP.

    addiction is a growing diease and personally is a massive concern among the young people in our communities, and eventually GPs will be inundated with this diease!! they are not trained properly in treating an addict, unfortunately, i live in N Ireland and we have a brilliant system, i have cirrossis of the liver and ive loads of support from my consultant, my aa

    friends, addiction nurses, liver nurses I can even ring my consultants secretary if i have any concerns. good luck regards Codie, let me know and i'll keep your father in my prayers xx

  • I too am sorry your father is making poor lifestyle choices. I also agree with codie that the first step is to treat the addictions--as long as he continues the alcohol and drugs he will most likely continue to get even worse. I'm not in the medical profession but many of the things that you mention indicate that he is experiencing complications of more advanced cirrhosis. The confusion, attitude and incontinence are often exhibited with a cirrhosis complication called "hepatic encephalopathy" or "HE" for short. HE occurs when toxins build up in the body and his brain is impacted by these additional toxins. The liver's primary function is to filter the blood, removing these toxins. Toxins occur as the normal part of digestion. As cirrhosis starts to destroy the liver, it can't do its job as well. Now, if you add toxins like alcohol and drugs, the process just accelerates.

    The diuretics and laxatives (particularly one called lactulose (liquid) or kristalose (powder) promote the body's normal process of eliminating the toxins as well as trying to keep the ascites in check.

    I highly recommend a website MySickLiver.weebly.com to find out more information on cirrhosis.

    I'm sending positive thoughts and energies your way to help your father get the proper help!

  • Hi HighRen

    Firstly, I'm sorry to hear that you and your family are going through this. My father was diagnosed with cirrhosis a couple of years ago and later on got alcohol hepatitis. Basically he didn't stop drinking, he regulary missed all the appointments arranged for him. I became ill with the stress of it.

    When diagnosed he was workig and living on his own. He became very depressed and would regulary go missing only to be found stumbling out of a pub.

    The turning point was when I became concerned one night that he would take his own life and I called the doctor and they sectioned him. Although it was very distressing seeing him being sectioned I was relieved that he was safe and secure. When I say turning point, what I mean is that thei seemed to be the catalyst for getting him onto a routine of attending appointments and seeing varoloous people like dieticians, social worker, mental health worker and importantly we were able to get him into a sheltered housing unit.

    My father lived in the sheltered housing unit for just over a year. He died two weeks ago. Despite him attending the appoirments, getting the medicine etc he continued to drink. And this was the problem. Although I think it may have been different if my father had stopped drinking.

    Despite my father continuing to drink, i was glad that he stayed in the sheltered housing in his last year becaue he wa ls surrounded by people who in turn helped me cope too.

    HighRen- it's going to be difficult but you must make sure that you look after yourself at the same time. It's very easy to forget to do that when dealing with this kind of thing.

    I spent years feeling frustrated and angry with my dad because he wouldn't stop drinking. It took me a while to realise that there is only so much you can do which will be the best you can do because you love your dad, but it's a fight that your dads fighting and you are feeling the effects of it.

    Please don't beat yourself up too much, you sound like you are doing your best.

    Stay strong mate

    Kittycats

  • It is extremely important that as a family, you support one another. The worse thing in life is to watch a loved one destroying themselves. It seems that your father has made choices, which will cause great harm to his health. You and your family are obviously very worrid about him. It is very likely he is making these choices, being completely aware of the end result. All you can do is take care of your family members around you and support your father whenever possible. I know how you feel because I have a brother who is on the same path as your father. Please do not make yourself ill over your father, he will probably not be able to comprehend your feelings or be able to react rationally to them. Do take care...

  • really sorry to hear about your father:i'm an ex herion user,used to drink alot when i was younger,ive had a liver transplant at addenbrookes hospital 4-years ago(cambridge)!i've been throu exactly whats happening to your father,but luckily i stopped drink and drugs,cause ive got two young children and stpped what i was doing they gave me a transplant.untill your father stops he is in limbo?i don't under stand what you really want advice for.But im willing to help any way i can.So please could you be more open of what you want to know. darren1965.dt@gmail.com ??thank you.

  • Hello and thank you all for your answers. Apologies for not responding sooner but it has all bit a little overwhelming. It's not looking like he will stop drinking or using drugs at any point soon. He's also refusing all treatment and won't speak to us because we are apparently hassling him and said he can't be bothered to go to appointments. Which does leave us in limbo. I suppose I wanted to know what the authorities (GP, Social Services etc.) have to provide in terms of duty of care. He is in absolute denial that he is even ill and they say that this is his choice. So for the time being at least we are going to concentrate on looking after our families and wait until the time comes for his faculties to deteriorate to the point that we can make him comfortable and maybe offer him a little dignity at the end.

    Once again , thank you for responding so kindly.

  • Is your father swelling at the stomach,and going yellowish.if so asterisk (can't spell it),that's why he is losing his memory,get in touch with addaction,that's were I first started.good luck.I'm Darren if I can help 07907674562.

  • Hello HighRen. I am so sorry to hear about this sad situation. My brother was a herion addict, and then alcohol and prescription tablets etc. usual story of the person on the path to self destruction. He was the kindest most beautiful person you would wish to meet. When he found out he had Hepatitis C, he made the big mistake of telling our family. The reaction to this news was terrible. My father wouldn't speak to him again and my sister wouldn't let her children even touch him. He had also been on a methadone program. When he was most vulnerable and dying in hospital my parents let the hospital know (and they agreed!!) that he should not have his methadone anymore. He died within a short time. I will never get over the whole situation. My family and the staff of the Cairn s Base Hospital (Qld) where he died were disgraceful. In his last few days he had ascites, end stage liver failure and was in obvious pain fuelled by the cessation of his methadone. I asked his nurse if he could have something for his incredible pain to which she replied "that you would think he'd had enough already in his lifetime"and stuck two panadol down his throat beside his feeding tube.

    PLEASE, PLEASE if you do nothing else please make him comfortable and ensure his dignity or what's left of it is paramount. Don't let him die like a dog like my brother did (in fact the RSPCA wouldn't have allowed this treatment of him if he were a dog). I am crying now as I write this to you. If I had the time again I would have grown a backbone, stood up to my parents and taken him somewhere for Palliative Care. He is at peace now but at what a cost. I have a picture on my fridge of a little girl playing and then another of her in the gutter later in life and it says "Lucy wasn't born a drug addict"". We should all remember that. I wish you love, kindness and strength and am thinking of you all.

  • What a beautiful sensitivelly written and compassionate post. RIP to your dear sweet brother. I know it's three years since you wrote this but your pain moved me to tears

  • What a sad story and HiRen you are doing the best you can.

    Even if you had been able to make inroads into the drinking, his liver is still under attack from active Hep C and Hep B. He's not going to get better, but as Carer6 says, is it possible to arrange some sort of palliative care? I know we have wonderful hospices and hospice at home services in the UK for cancer (and other) patients, but afraid I have no experience of whether they offer palliative care for those with BBV's or alcoholic liver disease. If he keeps discharging himself from hospital, I guess he would refuse hospice care.

    Sending positive vibes and hoping you dont carry a burden of guilt, as it seems you really are trying your best in difficult circumstance

    Bolly

  • PS - are you able to set up a Power of Attorney - this allows you to represent him and act for him on some affairs.

  • There is a Lasting Power of Attorney health and welfare form you can look up and download from the internet

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