A close relative of mine has been living with cirrhosis for a number of years but unfortunately will not take the necessary actions or talk about it and continues to excessively drink and abuse painkillers.
Whilst we love this relative dearly we are never informed of his health and when they are “ill” the symptoms are always brushed off as different illnesses.
Most recent symptoms are;
Extreme tiredness
Sleeping throughout the day and awake all night
Low moods/depression
Brain fog & forgetfulness
Change in personality
Reclusiveness
General loss of well-being
Aches and pains in legs, shoulders and back
Inability to walk unaided at a times
Severe shakes in the hands and body
Low blood pressure
Low blood sugars (they are a diabetic)
Pale skin and looking washed out
Muscle wastage
Avoiding hospital appointments
Sadly, myself and members of our family are never going to get a straight answer and wonder how severe this all is.
Based on experience how far gone does this sound?
We are expecting the worse.
Thanks
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Seekingadvice247
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Hello seeking advice. It sounds like your relative is indeed quite poorly and exhibiting some of the common symptoms of advanced liver disease.
They are possibly suffering from Hepatic Encephalopathy which is when toxins build up in the blood stream and can cause issues such as liver flap/tremors/asterixis, personality change, sleep issues and more - it can potentially become life threatening if they slip into a coma.
That being said these same symptoms can also be associate with exess alcohol and the depressive state this patient is in.
It's sad that they won't engage with medical treatment and it must be heartbreaking to see a loved one slowly drinking themselves to death - which sadly - barring perhaps an emergency admission to hospital (perhaps due to a bleed or similar) and a 'see the light moment' is probably the way they'll go.
Sadly no one else can make the decision for them.
Things to look out for are bleeding in gastrointestinal tract, vomiting blood, jaundice, obvious coma/unconsciousness and build up of fluid (ascites in tummy) and obvious swelling/oedema in legs and a maddening sub-cutaneous itch due to bilirubin build up. Scratching can cause very bad infections. All these latter symptoms are associated with decompensated and potentially life threatening issues that need urgent and/or emergency treatment.
You might find the charity Al-anon useful as they provide guidance to people affected by a loved ones alcohol use.
Thank for your detailed information. We have long thought it was HE however the person in question is refusing any medical treatment or advice.. very difficult to put into words but it’s only going one way.
There is also the possibility of something like Wernicke-Korsakoff Syndrome caused by the long term alcohol use. A lot of the symptoms are similar but again it's a serious condition that would require medical intervention.
"Wernicke-Korsakoff syndrome (WKS) refers to a condition where both Wernicke encephalopathy (WE) and Korsakoff syndrome (KS) are present in one individual. WKS is most commonly referred to as an alcohol-related brain injury, developed as a result of long-term alcohol abuse leading to severe thiamine deficiency."
The individual in question is still dazed and confused after a drink on Tuesday night.It seems to be coming in bouts. I’ve spoken to individual and found them to be very slow but at times can be lucid.
Complete refusal for any medical treatment and to seek advice. Primary care giver is at breaking point but psyically cannot do anything as they’ve said they’ll decline treatment. Other members of family very worried and thinking of intervening but likely to cause a flare up.
If someone is suffering from HE or Wernicke-Korsakoff Syndrome and urgently need treatment but refuse would the route of sectioning be an avenue or not?
Mental health services won't touch someone who is under the influence of alcohol AND if the person still appears lucid to health services then they won't over rule them if they refuse health treatment. We've sadly had members on here before who were supporting loved ones with cirrhosis and HE even one lady who called an ambulance because her loved one was suffering a variceal bleed but refused medical intervention and was left at home by ambulance sadly only to pass away.
Sadly in my previous work I was supporting a lady who was desperate for mental health support to the degree she was so distressed she was tearing out her hair in clumps BUT neither the GP nor mental health emergency team would intervene as she was drunk at the time.
It's one of those impossible scenarios, you can't force someone to have medical intervention if they are lucid enough to make that decision.
It's difficult to have a guess at how far advanced their disease now is, as chronic alcohol abuse on its own will cause a lot of those symptoms. How old are they?
Early 60’s. Diagnosed 7+ years ago but has seemingly carried on with alcohol abuse without any “major” scares up untill no. We are now to a point where one drink causes days of illness. Complete refusal of any medical advice. Dodges appointments with specialists. What do you do!!
Hello seeking advice,Unfortunately there is very very little that you can do to be honest especially if they have capacity to make there own decisions, and people are allowed to make unwise decisions.
With my husband when he was at his worst and wouldn’t listen, I took a step back and decided to let him get on with it, I was totally exhausted and fed up with the whole situation, I went back to full time work, he was eventually admitted to hospital with bleeding varices and ended up in ICU. Whilst in hospital he had a DOLs placed on him due to post op delirium. The hospital did consult with myself about that, and I told them if that was the way they needed to go for his safety then it needed to be done.
He has bouts of HE, and I know when he hasn’t been to the toilet, his mood changes and he can come across as aggressive.
Thankfully he hasn’t touched alcohol for over 2 years now, however the damage has been done and is irreversible.
Make sure that the family member is also taking time out for themselves, it’s a very, very, difficult time for them, so they also need support.
Alcohol abuse/ addiction is a very selfish condition and it affects everyone around them.
If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 10am to 3pm on 0800 652 7330 (excluding bank holidays)
Thank you all for your support, kind words and advice.
Update - Individual carried on with symptoms of HE however refused to allow care giver to call for medical advice. Family very alarmed and concerned and started honest dialogue about cirrhosis and their health. Last couple of days have been “fine”.
My big question now would be whether HE comes and goes? Would it flare up after a heavy alcohol session?
Trying to build up as much as a picture as we can to establish best way of supporting care giver and keeping individual from harm.
Alcohol could potentially exacerbate symptoms but in more probability symptoms can appear worse if the individual hasn't moved their bowels. Most patients with HE will be prescribed lactulose to help them do the loo 3-4 times per day. Nowadays this is often prescribed in combination with Rifaximin to help rid the body of toxins. The BLT has a really good page and downloadable He passport document. britishlivertrust.org.uk/in...
From first diagnosis of compensated cirrhosis the average life expectancy is said to be 5 to 15 years. Quiting drink and healthy living improves that prognosis
Your relative carried on drinking and is 7 years in.
When feeling well enough to leave the house the patient will often be found in pubs, for example Weatherspoons where you can order via an app. When not able to leave the house unfortunately the care giver buys it for him.
The care giver sadly gives into the patient and is very loyal towards them. When things are bad they will speak to the family about it but what is now the case is when things are better we are frozen out and told lies. With certain people being told certain stuff. None of the family know what to do as if we question it then we are told not to worry.
It’s causing a few problems and a lot of division.
The HE is now being played down as simply dehydratation.
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