refusing treatment how fast do people decline?

[Bluescarf123]

hubby has ARLD he was on the transplant list but took himself off due to PTSD. He is not drunk alcohol for two years since he was first hospitalised with decompensated liver he has no acides or varies for the last 18 months. he has had HE the whole time and is treated for this. he was doing okay. He was stable affected by tiredness joint pains, communication issues and personality changes due to HE, however now he is depressed he’s given up. He is decided not to go for blood tests that regulate his liver medications, he has decided not to interact with the GP and let himself decline. He has become more tired, his speech slower, clearly signs that the HE is getting worse. He is sleeping most of the day and night possibly only awake an hour or two a day. he is eating less, less movement and speech is becoming less.. He is visibly yellow skin and eyes. It’s got worse over the last few weeks but seems to have levelled off. It is not as yellow as when he was in hospital two years ago.

I have all the help and support in place. We have all talked to him. I have rung the GP. We’ve had family and friends involved he does not to change his mind. He’s refusing to enable power-of-attorney medical or legal. he is refusing to engage in palliative care to outline what he doesn’t want to happen, he’s just in denial . My question is not what other support can we do. I’ve rang the BLT helpline, I have therapy. my question is when somebody doesn’t have varicies or acides of how long can it take them to decline? I know that I will call an ambulance if he slips into a coma or HE gets worse but I’ve also been told that he is permitted to refuse Hospital ambulance when it arrives. I know it’s really difficult for people to give a timeline without blood results. previously he could’ve lived 10 to 20 years if he looked after himself. Nowhe’s not looking after himsel, not exercising properly, not having blood test to regulate the medication, what are we looking at here? Less years or just months , has anyone got personal experience of this? has anybody experienced this level of depression and loss of interaction with medical services?

[Dogbot]

I’m so sorry to hear your all going through this in a way I think it’s worse on the family and friends but as a person that has been through this, it’s horrible for the person , but he is not making rastional decisions. I don’t think you can put a time on something like this everyone is different 🤷🏻‍♂️but I do wish you all the best and good luck from the wife and I who went through it 💕💕.

Stay safe All

Dogbot 🐶🌈Dave

[Bluescarf123 in reply to Dogbot]

thank you so much for the reply. I’m the wife and hes my husband of 20 years we have two children who are teenagers, who watching their dad slowly fade away refusing palliative care. He’s taking his liver medications. He’s not been to hospital since the end of February and not had blood test since December. I am heartbroken the kids are heartbroken but it’s very difficult for us to know when to advise friends family because he’s refusing treatment. We don’t know how serious he is or how long it’s going to be like this. whether we should communicate with friends and family widely now or wait a few months, I am giving him all the love and care and kindness that I can, but I’m fairly sure trained nurses would give better care given their experience. without his permission, The GP says that we are not able to engage palliative care.

This forum is full of lots of very kind of people so any advice for this difficult situation would be gratefully received. There’s lots of advice online for people who have palliative care. There’s not much advice online for people who are not able to access that and caring for her end of life, with no help or support

[Dogbot in reply to Bluescarf123]

The thing I would say is tell everyone, I had and still have a fantastic wife and children, also 5 grandchildren but I didn’t stop drinking. It was a nurse that said about buying alcohol or living for grandchildren, it got me and nearly 21 years later without a single drink I have all my grandchildren and a wife that I’m having a great life with. What I’m trying to say is you don’t know who might say the right thing to your husband. Maybe worth a shot good luck 💕💕.

Stay safe All

Dogbot 🐶🌈Dave

[Bluescarf123]

he stopped drinking two years ago with the first liver diagnosis. He’s not had a drop since. this decline is not caused by alcohol it is caused by depression and complex PTSD which means he’s not looking after himself in terms of diet exercise and now refusing to interact with the liver unit that monitors him or the GP, is really sad. He has so much to live for.

[Breakfastbabe]

I am so sorry to hear about your predicament. It must be so hard for you dealing with all of this. One thing I wondered was regarding the PoA and HE. If he enters a stage of hallucinating or coma, would you then be able to override his decision to refuse treatment as he might be deemed unable to make an informed decision? I have no knowledge in this area but when we set up PoAs that was my understanding. I understand they may be different to ours.I really hope you find some support to help you through this?

[Bluescarf123 in reply to Breakfastbabe]

if he goes into a coma hallucinates I can call an ambulance but apparently if he declines to get in without a medical power-of-attorney I can’t force the issue. It’s still absolutely completely worth ago and I will do it if that happens. Thanks for reply. It’s really appreciated as a really difficult time.

[Roy1955]

Giving up drinking is easy.Identifying why I needed to drink and overcoming the cause of the deep depression that I used drink as medication to live a normal life was the hardest thing I ever done.

For a long while I was a sober drunk (research that phrase).

Yes your husband has liver disease but it sounds like he is also in a mental health crisis.

His liver Dr is probably not the best choice to help with that.

I think you can self refer him to talking therapy and then see what develops from there.

[Bluescarf123 in reply to Roy1955]

I totally agree with you he’s been in mental health crisis for the last year. He saw a therapist for the PTSD which took him off the transplant list. However he stopped saying that therapist and he cannot be encouraged to go back for talking therapy until somebody is ready it’s very difficult to get them to engage with it. He’s in mental health crisis and that’s driven the lack of engagement for treatment. I think he’s got complex PTSD About his time in hospital when the liver failed the first time a couple of years ago it was a truly horrific experience. Thanks for your reply. It’s really appreciated. Such a difficult time to know people read this and take the time to reply.

[2022minks]

Much love to you, your children and especially your husband. No one can ever tell you exactly how long someone has the fact hubby has not drunk for the last two years helps his liver. I really think his mental health needs to be properly looked into as sounds like he has given up and is in a severe depression especially when he has taken himself off the transplant list. He has lots to live for and a possible future thru transplant. Depression will effect his decisions but also having HE ontop magnitudes it. My mum was diagnosed at decomp stage and given a couple of years, and she wasn't viable for transplant, she lasted for 5 years, luckily I knew mums wishes from diagnosis she didn't want any evasive procedures, just scans and 6 monthly tests. Move forward to her last 8 months she was so affected by HE she became very paranoid, hallucinate, aggressive moods, hated everyone, accussed all around her of things that weren't true, wouldn't even engage with food choices and would not allow anyone to have control over her life so things on this side are similar and mum had closed herself off from life and people which because of her history with depression just made everything worse.

There is a complete lack of care cover of helping liver patients deal with the effects on their mind, its as if its all part of the course, but once mum was through that stage about 8 weeks before death she became such a lovely person and haliperidol probably helped with that.

Now mum was under pallative surveillance and all liver disease patients at decompensated stage should have the community health teams to call on. I think you have every right to talk to his gp to discuss how hubby is and try and get them to assess him for his ptsd symptoms. Your hubby's life is for living even though he is in a dark place I hope you can help lift him. You are doing a great job by being there for him and what ever happens you are his rock and that in its self is so important xx