Hi I have joined as my brother has end stage cirrhosis of the liver along with ascites & other complications due to very heavy drinking over many years. He is now at the stage where he can’t walk & refuses to let me contact his gp or any other health professional. Any offers of advice would be extremely grateful.
Thank you
Hello Jimmy.
There often becomes a point with some people that they begin to lack the ability to think logically and for the best part can’t always remember what is going on. This is one of the characteristics of a condition known as Hepatic Encephalopathy (HE).
Basically, this is when the liver is no longer able to process and make safe some of the toxic chemicals that are produced in the gut. These chemicals, like ammonia, can leak out and enter the blood system, where they travel up to the brain and cause brain damage. This damage can be limited if treated as soon as possible, but if left can cause permanent damage and in some cases lead a person to slip into a coma.
When a person suffers a HE episode, they don’t realise what they are saying as their thinking ability becomes limited. They can become confused and forgetful, they can become frustrated and say nasty things. There have been cases where people have driven along the motorway on the wrong side of the road, totally oblivious to the oncoming traffic, and still not realise anything is wrong.
There was a case on here some years ago, where this gentleman was experiencing an HE episode, and also a variceal bleed at the same time. His wife called an ambulance, but he refused to go to the hospital. In his mind, there was nothing wrong. The ambulance crew left, and the man passed away later that evening.
If this is indeed the case with your poor brother, there are some things you could try and do.
Firstly, if your brother is having HE episodes, it could be argued that he isn’t compos mentis enough to understand the severity of his medical condition. You can apply to have “Power of Attorney” over his medical welfare. This way, for any medical needs he may have, you will be able to issue instructions. So, if an Ambulance crew were to attend, and he refused to go to hospital, you could instruct the crew to take him as you’ll have Power of attorney over your brothers medical welfare: nhs.uk/conditions/social-ca...
The other option is to speak with his GP. Explain that you feel he’s not compos mentis enough to understand his medical predicament and that in doing so, he is a danger to himself. The GP can then apply a Deprivation of Liberty Safeguards (DoLS) order: scie.org.uk/mca/dols/at-a-g...
Believe me, these may seem hard measures, but once a person gets into the medical system, they will receive all the medical help they need. It may seem that this is wrong, but some people with HE have no idea what is happening.
I hope this is of some help. Speak to his GP if you can as this could well be avoiding a medical emergency in the future.
Good luck to you both.
Richard
Thank you for taking time to reply, I appreciate that. He was diagnosed with mild HE & varices along with end stage cirrhosis sept 2020 along with survival estimate. He is well aware of his situation.I know he is suffering (he’s not been able to make it to the toilet over the past few days) & he’s told me he wants to stay a home.
It’s such a difficult position to be in.
Oh dear is your brother on lactulose? If so increase the dose ( it will get rid of the toxins) ring his consultant and ask the go to do I home visit and ask them to get a district nurse to give him phosphate enemas twice a day. I totally agree with Richard-Allan, I gave my brother power of attorney ( it’s still in place 5 years on, even though I am currently totally in control) if he refuses to take lactulose or have enemas then he will need to be admitted so they can treat his encephalopathy via a Jason-gastric tube. He needs urgent treatment. How are you coping? HE is harder on family and friends than the patient. Please look after you! Good luck xx
Yes he is but still drinking heavily. I am going to see him tomorrow & be firm & honest with him. Thank you for your advice.
If he doesn’t get medical help to stop drinking ( he can’t just stop on his own, it’s extremely dangerous) I’m sorry to be blunt he’s going to die. Only he can decide if he wants to fight x
I’m sorry to read your post. The situation you describe is incredibly difficult both for you and him. It’s really hard to know where to draw the line between respecting his wishes and when you have to override them and seek professional support. For me, I think incontinence is probably it. It means he’s not in control of his bodily functions. You say he has mild HE, may that be getting worse? I think you’ve probably hit the point where you now need to involve the GP. They will be well equipped to assess his situation and start to escalate care if needs be. Soldiering on may actually put him at risk if he has HE as it can get out of control if not treated properly. So sadly, I think it’s worth a discreet phone call to the GP and a difficult discussion with your brother. Hope things get better.
Thank you for taking time to offer me advice. I am gonna be firm & honest with him tomorrow.
All the replies are right he really does need help but you are in a difficult position that you don’t want to go against him 🤔. I think you might think a bi more about getting him help because (I’m sorry to say) when the end comes at least you will have done everything in your power to help and it may give you peace of mind. Once again sorry to hear about your situation good luck.Stay safe All
Dogbot 🐶🌈Dave
I don’t think that I haven’t done enough for him. My wish for him to recover is more than his wish. So painful watching some self destruct. I will try and talk to him again tomorrow. Thank you for your advice
My husband also has end stage cirrhosis and HE…. He takes his medication and does quiet well….My husband has mild nose bleeds and has severe stiff joints but walks slowly… I stay worried about him constantly and sick with no energy……
Sorry to hear that
Is he still drinking? I think that will be a big factor in how much help he's willing to accept.
Unfortunately yes he is
Sounds really similar to my situation except I'm not directly involved, but other relatives are.I have to be honest and say that whilst your brother is still drinking, he's really unlikely to accept any sort of help. I don't know if you've got support but AlAnon are supposed to be good. I think they would tell you to detach with love.
Ultimately you can't force him to get help. I understand the HE is likely impairing his thoughts to some extent but other than getting him to agree to giving you power of attorney and therefore being able to make decisions for him, I can't see what you can do.
You also have to think of yourself here. Which isn't selfish, in case you think it is. You haven't chosen this path for your brother (or yourself) and you certainly aren't responsible for him.
I don't know if that helps or not, but I wanted to offer you support.
Hi JimmyMartin. If you are in the UK you could call the British Liver Trust Helpline to talk this through. Call 0800 652 7330 between 10am and 3pm Monday to Friday (excluding bank holidays) or email helpline@britishlivertrust.org.uk (emails can be sent at any time and are answered during helpline hours).
Hi Jimmy, I’m so sorry to hear the difficult position you’re in. I think he’s at the stage where you do need to call the GP. You can explain that your brother wants to stay at home but they can support him to make that happen. They can arrange an assessment to get the equipment he needs e.g commode, rails, perching stools to stay at home. They can also put emergency care in place if he can’t get out of bed. I know services can vary from place to place. Alternatively call a local hospice,that way you wouldn’t be going against his wishes but the can also organise support at home. I hope this helps.
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