Don't know where to turn.

[MANDYBARRASS1983]

Hello, I am new to the group so here goes.

My dad is 70 and has been diagnosed with Cirrhosis of the liver. he is alcohol dependent and has been for as long as i can remember. the consultant said if he carries on drinking at the same rate he had about 2 years to live, that was probably about 9 (ish) months ago. The consultant also said the damage was done so stopping drinking would not change the outcome.

i am not clinical in any way and only know what i have googled, which i know is not always the best!

my dad seems to have taken a dramatic decline and no one in the 'professional' world seems to want to help me and i don't know what to do.

He has dementia like symptoms which are getting worse with every passing day, he cant remember anything, is so confused. The doctor referred him to the memory clinic, however the consultant said that as his drinking is a major factor then he is convinced it is alcohol related dementia and does not need to see him. furious!

he does not take his medication as he forgets and only takes it if a physically hand them to him. he has COPD and constantly loses his inhalers, that bad that he had some delivered tea time yesterday and now they are no where to be seen! what do i do!!!!! I previously spoke to his GP about this, and all she said was to keep an eye on the problem as there is nothing they can do!

he is very jaundice, has swollen abdomen and feet. he has constant heartburn like symptoms, and is starting to bleed when he simply scratches himself.

he is about 6ft 2 and weighs around 7 1/2 stone. i have never seen someone so thin. i try and make him eat but is full from a small bite.

he has not been washed for months and is very dirty but i cant force him and he tells me he has been in the bath.

i had social services visit him, they advised carers going in would be beneficial, but he would have to pay for this and my dad simply refused, he said he has paid taxes all his life and no one is taking his pension! he does not understand it is to help him, he just thinks people want to steal his money. so along with 2 children and a full time job and try and work this the best i can and i am struggling and don't know what to do.

Do any of you have any experience of the above? can you give me any pointers?

Thank you

[carmik]

So sorry to hear this mandy

He obviously has what is known as hepatic encepalopathy

This is due to the liver not working properly

There is medication but if you cant get him to take it i am afraid you are on a loser there.

He should be seen in the liver clinic to see if they can make him comfortable by getting him on some meds

Good luck

[AyrshireK]

I hate to say this but Dad is showing all the symptoms of late stage decompensated liver disease - continuing to drink will more than likely result in full on liver failure, however, stopping so late in the day as his GP has said is probably not an option. It would require a medical detox and no doubt Dad isn't going to want that sort of intervention.

With a swollen abdomen and feet it sounds like he has fluid build up (ascites & oedema), muscle wastage, low plate let count (the easy bleeding), he's probably go issues internally with his oesophagus and stomach lining and the confusion issues might be alcohol induced dementia or Hepatic Encephalopathy which is due to toxins building up in the blood and brain.

This is an impossible situation for you to be left in whilst also trying to look after your own children and hold down a job and I can imagine it is more than a bit stressfull (to say the least).

Some of his current symptoms could perhaps be alleviated with medication - lactulose and rifaximin for the confusion issues, water tablets and possible drains for the fluid build up, supplementary drinks to help with calorie intake etc. But if Dad is non-compliant or loosing meds & unwilling to allow carers to help then it truly is a vicious cycle.

Dad should be receiving appropriate care (perhaps in a proper care environment) or palliative/end of life care - you can not be expected to cope with this sort of situation alone.

Perhaps make an appointment with GP and discuss paliative care / hospice care or even hospitalisation. My husbands father had to be made subject to a deprivation of liberties order (DOLS) and compulsory detained in a care of the elderly mental health assessment centre due to becoming a potential danger to himself and others when he was suffering from advanced alzheimers and dementia - not quite the same issue but he too wouldn't allow carers in to his property and got quite violent with them.

There must be actions that can be taken to make sure your Dad is receiving appropriate medical and mental health care.

Thoughts very much with you, Katie

[Hidden]

Hi Mandy. My heart goes out to you. I've been in your situation. Alcoholics are offered help and many refuse it because they can't even admit to themselves let alone anyone else that they are adicted and it's killing them. I was I was bringing up 2 children and looking after an alcoholic husband there is little or no support for us we are just left to get on with it. In the end you almost have to say well stuff you if you can't make the effort to look after yourself why the hell should I? Tough when it's someone you love but you have to look after yourself in order to get through what is to come. My husband died 8 years ago in ITU at the age of 54. His problems are over, mine and my children's continued. I wish I could say there's going to be a happy outcome but there isn't but by keeping strong and caring for the people who need you and want you the most ... your children, you will get through it and come out the other side knowing that you did all you could for your Dad but wouldnt accept it graciously.

keep us posted. It may only be words but there's plenty of understanding and compassion here.

xx

[carmik in reply to Hidden]

Hi laura i read you post and it brought back my past.

I got to the stage with my ex when i gave up. I actually threw him out. He did die many years later. The irony of this is that some years later i met somebody and remarried. Within. A year of meeting him he became ill. Took months to find the problem. He didn't smoke or drink or do drugs. Guess what he was found to have liver disease. Known as Alpha1 antitrypsin deficiency inherited from his parents.

But it wasn't his fault and I looked after him right through ,up to and post transplant and he is still here. IRONIC THAT THAT SHOULD HAPPEN.dont u think!

[Hidden in reply to carmik]

Oh it certainly is! I too have remarried and we are extremely happy together. A year ago he developed polymyalgia rhumatica and is on steroids and methotrexate which has side effects one of which is reduced liver function. So when he had a routine blood test which showed just that you can imagine my panic. He had to come of it for several weeks til his bloods showed his liver was functioning normally again. Thankfully it is but we are looking at getting some other treatment as I can't go through our lives wondering if this wonderful man may also eventually end up with liver disease through no fault of his own. We are so happy, have a great life and want it stay that way. I wish you both the same x

[carmik in reply to Hidden]

Well laura. I have always said that 'him up there' was making sure that i wasn't just selfish in dumping the first one and was testing me out the 2nd time round.!

We too r very happy even though we have had lots of his health issues to deal with.Hope your hubbies liver remains stable.

[Hidden]

You did the right thing for you as I did for me. There's only so much a person can be expected to put up with when living with an alcoholic. They can be incredibly selfish so at some point we have to do the same in order for us to be able to keep life on an even keel for the children, carry on working and keep the roof over our heads and stay sane !

😃

[Hidden]

Hi

You've certainly had a hard time of it.

I've got Nash amongst other things. It was caused by all the meds my drs have thrown at me over the years!! You all take care Lynne

[MANDYBARRASS1983]

Good Morning, thank you for the caring replies.

i know this may not be an appropriate question, or one that anyone can answer but i am a fact person and cope better knowing things than not but with his symptoms etc does anyone have an idea of life expectancy? i know we are not doctors and cant be sure but even a rough guestimate would help me try and cope. from what the consultant previously said he may have another 12ish months but when i look at him i cant see how that is possible.

Sorry to seem a little morbid just after seeing him last night today is not a great day. He was in such an awful mood, i took him medication for his cold, made him a hot meal, tidied his house and all he did was complain that he did not have a newspaper! i take one every day but yesterday i simply forgot but was made to feel like the worst daughter.

thank you for listening.