Hi everyone,
On NYE of this year, my 75 year old dad was diagnosed with end stage liver disease and liver cancer (after a lifetime of pretty heavy drinking, although he wouldn’t admit it). The diagnosis was obviously quite tough to swallow, as was the prognosis - he was given ‘months vs years’.
Over the past couple of weeks there seem to be bad days and good days with how he’s feeling, but since he had a drain in his stomach (for his asceities) he has deteriorated a fair amount.... he was not able to get out of bed for a couple of days, had no appetite whatsoever and had quite a lot of brain fog.
One thing that we would really appreciate is some advice on what the final stages of this disease really look like. I presume that the eating and appetite gets worse and worse (although this is currently pretty bad and my dad has a lot of nausea), he has pretty low energy (finds it hard to get out of chairs and is a little unsteady on his feet), and as I said, at times he has been a little mentally confused (often in the mornings - i have a theory that he is trying to make sense of his dreams) and has at times struggled to find words. He also sometimes has pain in his liver.
Currently I am at home caring for my dad alongside my mum, but I had two brothers and a sister (along with 3 of my dads grandchildren) who are not around (due to covid risks), and a big worry of ours is that we want to make sure that they are able to spend some time with my dad before he really deteriorates. I know that everyone is different but I would so appreciate some information on what the very final stages of this cruel disease look like, as we really want to make sure that our family are able to be together before that and also just prepare ourselves in the any way possible. We also were wondering if the final stages are usually spent in hospital vs at home (due to covid, my dad is at home but we have a feeling this wouldn’t be the case in normal times).
Thank you in advance.
I would like to follow your post as Iam in same situation with my husband, don’t seem to get any helpful info from our liver doctor as to if he is near end of life as he is having heath issues on a daily basis, as my husband is always with me at appointments it’s not something I can ask in front of him hope you get some helpful info all the best x
Thanks for your message and sorry you are going through this too. We also have the same problem in that all of the communication with my dad’s consultant has been with my dad there too. We (my mum and I) actually are planning on trying to email the consultant direct (if we can track down her email address) with some more specific questions that hopefully she can answer in a more frank way given my dad will not be a part of the convo.
However my mum has already asked my dads consultant for her advice on whether my brothers and sister should be around now, and she said ‘you will know when they need to be around’... which isn’t that helpful, and I kinda feel that she is implying that the very end stage is when our family should all be together.... but in our view, that’s a little late - we would prefer to spend time together before it gets to the point where my dad is unable to enjoy it.
Hopefully we both can get some advice / info from this forum.
All the best for your husband.
Hello to you both. I am so sorry you are having to go through this with your family members. It is incredibly tough.It's impossible to say how much longer they have to live, end stage doesn't necessarily mean death is imminent and every case is different.. This was my experience.... l should warn you it wasn't pretty and l truly hope when the time comes your loved ones slip away gently ......
Apologies to those of you who have read all this before but l guess these stories need to continue to be told .....
My husbands liver disease was caused by alcohol abuse. First diagnosed at the age of 50. Despite efforts to make him understand he had to quit drinking in order to survive, it was 4 years later before he finally did but the damage had been done and at this point there was no way back.
3 months after he had managed to give up, he had a nose bleed which was impossible to stop. I called 999 in the early hours and was taken to the high dependancy unit and to ICU 2 days later. There l was told his liver had failed, so had his kidneys. There was no chance of a double transplant as he had only managed to abstain from drinking for 3 months, he had to have done so for 6 months in order to get on list, then there would be the wait for these rare organs to become available. As the days wore on he was tubed and wired up to numerous monitors and machines which in all honesty were keeping him alive. Whenever he tried to speak blood would run from his mouth. He had 1 to 1 sometimes 2 to 1 round the clock care. I had every faith he was in the best hands, receiving the best possible care. By day 10 in ICU he was wearing a huge mask as, on top of everything else he developed broncho pneumonia. They told me oxygen was being pumped into him at a rate equivalent to driving down a motorway at 80mph with your head out of the window. I was told he was in a very grave condition but they wouldnt give up hope but realistically he could survive no more than 3 to 36 hours. By mid afternoon l was taken aside again for the docs to tell me he was deteriorating rapidly and they felt the kindest thing do do for him would be to top up his dire morphine and let him go. The nurse removed his mask telling him he had done really well and she was going to lay him down so he could have a rest ... (such compassion to the very end ) My husband sat bolt upright, turned and smiled at me with a smile l hadn't seen for years. This tortured soul, my husband, lover, best friend and Father to my beautiful children was finally going to rest and be free of pain. I sat and held his hand as the nurse sat with me with her arm around my waist as we watched his last heartbeats and last breaths on the screen until all the lines ran straight 💔
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Laura keep on telling your'e story dont apologise for it although its heart breaking it's good to know you and you're family are happy once again .People new to the forum need to hear it. you have been a great help to many of us when we have been unsure.Best wishes
Liz
Thankyou so much for your kind words Liz. How are things with you and hubby? Take care, stay safe.
Laura x
Ok at the moment thank you Laura. 😷
Great news. Long may it continue 👍
Thank you so much for sharing this information and your experience with your husband ... I am so so sorry that you had to go through that and am also so sorry for your loss. It’s heartbreaking to hear what you and your family went through, but at the same time, it is helpful to us as we do want and need to be aware of what could happen, so I’m very grateful to you for sharing. Thank you.
You are more than welcome. If our experience can help you and others going through the same awful addiction and disease then l'm more than happy to keep sharing our story. It must be doubly hard for you not being able to see your poorly loved ones during these lockdowns. My hopes for you are that you can have some real contact with them very soon. Anytime you need to talk don't hesitate to contact me.
All the very best to you and your families.
Laura xxx
Dear Laura, my heart hassincerely has been touched and moved. There for the grace of....xx
Thankyou so much Martha xx
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thank you for sharing x Lisa