end stage liver disease

Hi all,

i am new to the forum, but as the main support to my father i wanted to be able to hear some experiences/advice from others as I am at a loss as to what to do to support my dad. He has been diagnosed with end stage liver disease in February, he is 53 and also suffers from depression (although i think often alcoholism and depression come hand in hand). he was admitted to hospital for detox and has had ascites, swollen legs, jaundice, nose bleeds. I attend his hospital appointments and some GP appointments also. He did not want to attend hospital and has still appeared very poorly since. When we visited with the specialist in April they told us that had he not attended hospital and stopped drinking when he did, that it is likely that he would not have been alive to make that appointment. His next appointment with the specialist is in October, where he will have been alcohol free for 7 months, and would hopefully then be accepted on the transplant list.

Since then, he has been receiving medication to help with his swelling but it still flares up and causes him a lot of difficulty. His nose bleeds do seem to have stopped. However he complains of different things now and i don't always know what is linked to the liver disease, and what down to his depression. He states that he often has diarreah and is unable to leave the house, the swelling of his legs still cause him to be able to walk only short distances and his stomach is still swollen. He gets cramping in his legs and neck, says that he is often very tired and confused and he has no 'life' in him anymore. He has basically become a recluse and vary rarely socialises with anyone. he has also been signed off of work since diagnosed and i assume he will not be able to return.. this is also a big concern for him. All of his social life before now was based at the pub and all of his friends are drinkers. i feel like now he literally only has me, which saddens me a lot. i have also got a 9year old and a 5month baby so feel like there is only so much i am able to do myself.

anyway... yesterday my dad came to see me, and has told me that he is tired of living this life, and sees no end to the suffering. He tells me that he now plans to stop taking all of his medication and 'let nature take its course'. I was very angry at the time and am not sure how i am supposed to react to this decision? am i supposed to accept this choice? he has nobody else and i feel like i cant leave him to do this alone, yet i am so angry at him for choosing to just give up? i also tell him that this is likely due to his depression and things could improve over time, although if i am honest with myself i don't know if i believe it will or not, as it seems that things are still deteriorating, despite his not drinking (although i am only taking his word for this anyway)
He still tells me that it is not about alcohol and is not drinking, although he says that he may start again to speed up the process.

i guess what i am wondering is if things would improve over time without the transplant if he continues with his medication, as who knows how long you could wait for this, if ever getting one. and what would happen if he stops taking his medication? i would love to hear from others who have been through this and just know what i am likely to expect? i know that it would be an awful death and i feel like i am riddled with guilt for not knowing what i am supposed to do. I have no idea how to support him!

Wow Kelly,

What a rough road you are on. How long ago did your dad get out of detox?

My thoughts...first and foremost that you have no real power to change anything for him. So very sad as he is relatively young and could have the potential for a life ahead of him. I would suggest you get yourself to an al-anon meeting where you can find support and suggestions for you. And my next suggestion is somewhat contrary to al-Anons philosophy but I have seen it work.

For him - should he decide at some point to enter the transplant program he will need documented attendance at AA meetings for six months. So the best help you might give him is to get his butt to an aa meeting. There are a lot of miracles in aa and some people are blessed to catch it early on. It may be all about alcohol despite what he says - i would suggest an offer that he could try 30 days without drinking and daily attendance at meetings, and at the end of that if he still feels the same way you will back off and let him follow his path of choice. Twofold benefit; you will have done what you can by offering to help him get well and that can remove the guilt if you allow it to, and the thirty days will be good for him regardless of his choice. If he won't go, he won't go, and you can let the guilt go as you will have done all that is in your power to do.

Be happy to help in any way I can.

Barbara