My dad is 71 and has decompensated liver from Cirrhosis. He had had a transplant assessment and has been told he isn't currently physically strong enough. They will see him again in a few weeks.I'm finding the decisions he is making regarding his care and health difficult.
Are there any helplines I can call to vent? I don't have a big circle and tensions are fraught between me and my parents at the moment due to me being neurodiverse.
I just can't process what's going on amd feel myself withdrawing from my dad.
Thanks in advance
Written by
ClairBear1983
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If you are in the UK and would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)
We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).
If you [are in the UK and] would find it helpful to speak to others with shared experience, you can register to join a group here
Hi, if you use Facebook please feel free to join our friendly and knowledgeable group called liver transplant support uk, thousands of people that have been in your situation. Hilary x
Hi there liver disease can be hard to get your head around as there are many complications. Please Don't step away from your dad he will need your support and that is basically what you should do as it will be for him to decide how he moves forward and what care he decides on. All you can do best is be supportive of his decisions even if you might not agree. The fact that he is being assessed for transplant is positive but not everyone is a candidate so bare that in mind. If you read the British Liver Trust booklets you can download them, they will give you a better understanding of liver disease. Its alot for your dad to take in so be patient with him xx
Thank you for your reply! I know all about the disease, its him saying one thing and doing another that I don't get. He says he's doing all he's been asked but then my mum says he's doing the bare minimum.
Hi, please talk to your dad about how he feels and what you can do to help him. I have liver cancer and speak to my family who are very supportive and concerned. If it helps please either phone the liver nurses on here or join the Facebook site mentioned on here above.
If would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays).
We also facilitate a range of virtual support groups for people living with a liver condition (and their families and carers).
If you would find it helpful to speak to others with shared experience, you can register to join a group here: britishlivertrust.org.uk/vi...
Hi Claire, it’s so hard being in your situation. And it’s so hard being in your parents positions. There are lots of posts on here from people who are trying to get their loved ones well enough for transplant and it’s not easy. When you are poorly enough to need a transplant people are often struggling to eat enough to gain weight and don’t have the strength or energy to do the excercise to build their strength. It’s not that they don’t want to, they just can’t.
You don’t say what the treatment decision your Dad has made that you are finding difficult. Mum decided not to have a transplant because she was very fragile and there was a high risk of her dying during the transplant. One of her friends found this decision particularly hard to accept. She didn’t want lose her. But the sad truth is that we all have to die and Mum chose to have a few months with us rather than risk going sooner by having the transplant.
We had seen my Dad having operations, radio therapy and chemo - he didn’t make it and what he went through was awful. He spent so much time recovering from treatments that he couldn’t do what he wanted. I could understand why Mum chose not to go through that.
We all have our experiences that influence our decisions. Maybe if you really listen to your Dads decision you’ll come to terms with it. You don’t have to like it. It won’t be easy no matter what he decides and whatever happens. Even people who have successful transplants have a tough time.
Your Mum and Dad are going to need you. Give yourself some time and apace to process what’s happening and then tell your parents you love them. You obviously do, and it will make you all feel better even if you cry while you do it.
I hope you’ve spoken to the BLT helpline - they are fab. I had regular counselling while my Mum was ill - well done for asking for help. We all need it. Best wishes, Kirsty
Thank you for your kind words, I appreciate your response. Dad has been told by the transplant team that he's not yet strong enough, he's losing weight rather than gaining. Initially he resisted the protein build up drinks, but now drinks them as much as he can, then when addenbrooks told him he needs to get stronger , I asked him if having a feeding tube would be an option, a sure fire way of getting what he needs into him rather than relying on him feeling hungry, which he just isnt, he told me they hadn't mentioned it, so I asked my mum if she would enquire, she said he's point blank refused a feeding tube. Then he got stroppy and said he won't be backed into a corner.
I do understand that he feels a loss of control over his care.
Given that he's expressed his will to live as long as possible, I would expect him to do absolutely anything to make that happen, and to me, he isn't.
I'm cross that he chose alcohol over his family every weekend when he was told every few months for many many years by his doctor that he needed to cut down or stop. We all asked him to cut down too.
He's a proud man but I can't understand how things don't change when you are told you are dying.
Oh Claire, I’m so sorry. What you’re going through is awful and what you’re feeling is completely normal. Your Dad has very little control over what’s happening and eating is one area of life that he can control. To think about giving that up must be hard. He may change his mind and he may be able to build himself up without it. Is he getting support from a nutritionist? His consultant can do a referral.
He may not feel like he deserves a transplant (I’ve heard that before), he may be scared about everything it involves. It’s not an easy thing to face and there are lots of complicated emotions. One thing is for sure, it’s not about you or your Mum. It’s all about the illness.
I know it’s different, but my kids both have T1 diabetes. My son had the option of an insulin pump but he didn’t like the idea of something “permanently attached”. Everyone, including him, could see the benefits but it took him 18 months and the sage words of an excellent consultant before he decided it would be a good idea.
I hope your Dad makes the right decision for him and that it’s one you can support him with. You are all going to need each other. Hang in there
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Great support
How long and what to expect.
