Final Stages

[Lorna94]

High, so my dad was diagnosed with ALD just over a year ago and I think he might be in final stages. He had an appointment with a specialist doctor last week but over this week he's quickly deteriorated. As he has failed to quit drinking I feel like docs aren't going to do much, which I totally get, there isn't much they can do...So I'm just wondering if anyone can tell me warning signs that he needs urgent care, what options I have as his caree (I work full time and can't get to him everyday, he refuses to have carers/the warden in and I am terrified of walking in to find him dead) and where can I go for support, I'm really struggling to deal with this...any tips/moral suppport appreciated!!!

[Hidden]

Hi Lorna94

Firstly, I am really sorry to hear the dilemma you are facing and fully understand your concerns having gone through this with a friend I was helping. My constant fear was turning up to her flat to face my worst nightmare. Sadly she too is still refusing to quit drinking, as well as all outside help.

Are you in the UK? If so I can tell you what services I called upon for help and when you would need to have your dad admitted to hospital, if he is willing to go, my friend often refused which made things very difficult indeed. Unfortunately, when under the influence of alcohol they're not the easiest of people to deal with.

Jacqui x

[Lorna94 in reply to Hidden]

Hi,

I'm sorry you're in a similar position! Yeah, I am UK, I'm going round in acouple hours I think if he hasn't improved I'll take him up a&e

[Hidden in reply to Lorna94]

Hi,

A&E is the best option, I called an ambulance out many times, sometimes she's been so poorly she's gone willingly, other times she's refused. But, if you're worried, it's the best place to get the help he needs.

If you read my post "My Friend" I think you'll probably identify with a lot, it covers most of the answers you were looking for.

Al-Anon is a support group for family/friends affected by alcoholism. You can go online where you will find details of meetings in your area as well as contact numbers for telephone support.

Hope you get the help you need.

Jacqui x

[Lorna94 in reply to Hidden]

I also don't want him to go into hospital to get 'fixed' then watch him deteriorate over and over, we've both been though it so many times and we're both exhausted. All he says he wants is to be comfortable. He asked me what would happen if he took all his pills...or if he stopped taking them. I've been suicidal myself and it's actually terrifying being the carer, I have so much respect for my Mum now...sorry, I'm rambling....basically, I can't and won't leave him to die, but I can't keep caring for him myself!!! I'm exhausted and have finally started rebuilding my life (after aformentioned suicide attempts) I dread going round there but wring my fingers constantly when I haven't been for a couple days. I'm just so lost...

[Hidden in reply to Lorna94]

Oh sweetheart you really do need some help. It's a huge responsibility to cope with on your own. I fully understand your fears...fear of turning up and finding your dad dead, but out of your mind when you're not there. It's going to drive you crazy because it's impossible to be with him, caring for him 24 hours a day.

Can you speak to his GP to see what help you can get? I also involved social services when dealing with my friend. They were extremely helpful and involved Occupational Therapists. There's also drug and alcohol addiction services, not sure where you live, in Reading where I live they're called IRIS, they are all over the country but sometimes under a different name. If you go online and search for them by name they will be able to give you contact details for your area. They offer so much help for both of you. They have support groups for family, one to one sessions and their own doctor who can even prescribe detox medication if this is something your Dad would be willing to try.

It is a very lonely existence for you but there is help out there. Please don't feel you're alone, you need to get in touch with any or all of these services and get as much help as possible.

You must take care of you as well, your health and well being is also important, this disease drags you down without the right support.

Let me know how you get on.

Thinking of you.

Take care, Jacqui x

[Lorna94 in reply to Hidden]

Thank you, can you self refere to social services? then?

[Urbanblanks in reply to Hidden]

Sorry nothing to do with that post but are you from reading thanks bri

[Hidden]

Hi,

We are sorry to hear your Dad is so unwell. It must be a very distressing time for you all.

If you are very worried about your dad's current health it would be advisable to get the GP to see him as an urgent appointment toady and they could arrange a direct admission to hospital.

Alternatively, you could take him in to A&E if you feel he needs immediate attention.

The British Liver Trust can offer support to you via our helpline on 0800 652 7330

Warm Wishes,

Rebecca

[Geffy22]

Aw hun, I am so sorry to read this. My hubby got very slow - shuffling - he slept a lot and stopped eating. He got confused. He lost most of his muscle mass too. I called 999 when I could not rouse him and he started getting agitated - our gp arranged palliative care but they weren't needed as he deteriorated so rapidly. In his last day he coughed up a lot of blood, which they could band, but when blood comes from the other end, there is nothing they can do.

Sorry this description is graphic, had I known what to look for I would have got him in hospital sooner - he Self discharged 4 days before he died, the hospital told me he was not dying when he left!!! They did not tell me anything or meet with me even though they knew we had children and discharged to come home, so I knew only 24 hours before he died that he was palliative.

Stay with him throughout if you can, my hubby asked for a kiss a few hours before he died so he will know you're there xxx

[Hidden in reply to Geffy22]

Hello ..as I read your post it sounds a lot like my hubby..the sleeping, not eating, really confused he was put in the hospital yesterday because it was so bad. He was let go of the hospital only a week ago and they said he wasn't dying so he's back in. What will happen now..i don't Have a clue. HI'm sorry for your loss and to have to ask how did your hubby die.. slept and didn't wake up? What can I possibly expect?

[Lorna94]

Thanks, I'm about to go over to his, when I last saw him he was very shakey, couldn't stand unaided and hadn't slept much over last few days. He's developed jaundice in the last week or two. He say's he's coughing yp blood, and feels like he needs to throw up, but can't cause of anti-reflux tablets. I dunno about the other end...I know he either struggles to go or can't stop. He's got a hernia that docs no about, but aren't yet concerned. He gets confused about days and what he's been doing. I believe, from conversation he has also had a few hallucinations and dellusions. He saw a specialist last week, but they won't do much, I'm concerned taking him to A&E is a waste of time and they'll turn him away. Also, as he can't get himself to the shop, he's not getting alcohol so he's going to be having withdrawl symptoms too.

[Hidden in reply to Lorna94]

Hi there

I'm sorry for the delay, I've been at the hospital with my mum for her third chemo session and only just returned home.

Your dad sounds like he needs urgent medical help if he is jaundiced and confused and in withdrawal.

If I were you I would call an ambulance, that's what I did for my friend and she was admitted to hospital for treatment and observation. I spoke to the hospital staff who were wonderful and they arranged for occupational therapy and social services to contact me as my friend also lived alone.

He needs help, as do you, it's impossible to do this on your own.

Please let me know how you get on.

Thinking of you.

Jacqui xx

[Hidden]

Hi, such a sad post I would ask for some advice from GP , if he suddenly stops drinking alcohol it is my understanding this may cause problems , thoughts are with you , take care of yourself xx

[Lperica10]

I am SO SORRY to hear you are going through this. I went through the SAME thing with my dad and he passed away on 10-12-16. He would NOT allow any help in his home other than me- which he needed a way higher level of care. He would NOT agree to living somewhere. He would NOT agree to hospice. I'm telling you this because I had the same thoughts, feelings, and anxiety you are having as to finding him or wondering how it would all play out... someone told me it might just have to get soooooo awful (at the time I didn't think it could get much worse) that he would have to agree or be forced into the hospital or whenever. This is what ended up happening (after MANY back and forth trips). It wasn't until he couldn't walk, couldn't breathe, and couldn't stop going to he bathroom everywhere-it ended up being a severe infection-that he told me to call 911 and he had to go to a hospital. (Those symptoms happened before at different times but this was a progression of everything and he looked so awful). - like before when he couldn't walk he was able to walk again after they "fixed" him. This time he wasnt walking for a while. Anyway he stayed in the hospital for 28 days where they treated 2 different infection, did some procedure, offered dialysis because his kidneys failed, (which only prolonged his life for 2 weeks-which we knew would happen and wondered why this was offered when at a different hospital 2 months ago he was told he couldnt get dialysis. After 28 days he was moved to a rehabilitation/nursing home facility which he lived for 4 days before going to the ICU and passing. I am thinking of you this was and is the hardest time of my life.

[tillycindy]

Listen to Jacqui sweetheart and call an ambulance. If he,s coughing up blood they,ll prob need to put a camera down his throat and check out where the blood,s coming from. if he,s withdrawing and you reassure him the hospital can give him medication for that, with luck he may agree to go without a fuss. I was in a not dissimilar situation and went through hallucinations at home for 3 days before being rushed in with bleeding. Which area are you?. If he agrees to stop the drinking now they will be much more helpful, though sadly it does make a difference which hospital you go to. Medway, where I have just moved from closed the alcohol ward due to cuts the year before I was there, crazy. I think Jacqui has covered everything else, please heed her advice for your sake also. Best wishes, anne.

[tillycindy in reply to tillycindy]

People can and do turn things around you know. It wasn,t easy, but I quit damaging my liver (alcohol is a poison to his now) and fortunately am still here. Take care. X

[Hidden in reply to tillycindy]

I Agree with Anne, where there's life there's always hope.

Take care xx

[Lorna94]

Thanks for the advice, I went in today and he seems to have inproved a bit (he can walk about his flat, and managed to eat a little) the docs are already aware of him coughing up blood which is due to hypotension in his throught and is on a waiting list for another endoscopy. He has a cheast xray/appointment at the hosp on Wed and wants to wait until then, he has agreed that he'll let the warden in everyday and to call me if he needs anything, I'm going back over sunday anyway and helping him shower/shave on monday, so will be keeping a close eye on him until then. I contacted social services, they said they can't do much for him, but can arrange a carers assessment for me which could help a lot!!

[Hidden in reply to Lorna94]

I'm glad to hear your Dad seems to have improved today and is happy to let the warden in, I hope that gives you some peace of mind.

I really pushed social services quite hard, they can arrange quite a lot of help but unfortunately you do have to really badger them. Hopefully, if they're arranging a Carers assessment for you, it could lead to more help. It's one of those situations where if you don't ask you don't get.

Remember though, if you're concerned about your Dad at any point you can call an ambulance and insist he is admitted to A&E for assessment, even if it's only for your peace of mind.

We're always here, lots of people with knowledge of what you're dealing with, Anne is a great source of valuable information.

Take care of yourself too.

Jacqui xx