advice on supporting someone with advanced liver failure

[Supporter37]

Hi all,

My fathers been having some symptoms over the last 6 months including

Drastic weight loss

Lack of appetite

Grey stools

Brown tar like urine

Painful tummy

Fatigue

Jaundice

he has found out he has 85% scarring on his liver and his latest liver function bloods were way over 800. He has explained that he has severe liver failure but is being a bit cagey with more information.

He doesn’t look well and I just know he’s dying. He has a scan tomorrow to check for any potential nearby cancer but has been talking about palliative care etc.

I know I shouldn’t Google but everywhere I search says 2 years but he’s been struggling for 6 months now. Am I right in thinking he’s probably at end of life with roughly 18 months?

Thanks

[Readlots]

Hi Supporter37, welcome to this group. Sorry to hear about your Dad, he sounds very poorly. When you say he’s being “carry” it sounds like he’s trying to protect you, and /or himself as he may not be ready to talk about this yet. He may be trying to process the information himself. Livers are notoriously tricky and doctors can be reluctant to give a prognosis because they are often wrong. There is lots of misinformation on Google so don’t get too stuck on the 2 year thing.

I had really positive experiences of palliative care with both my parents: Dad had bowel cancer that went to his liver, Mum had primary biliary cirrhosis. We had so much support as a family from the local hospice. They made the last few months of both parents lives comfortable and manageable. They helped us have those really hard conversations.

It sounds like you may have a hard road ahead so look after yourself while you’re trying to support your Dad. The temptation will be to fight this, but make sure you are listening to your Dad and what he wants.

[Supporter37 in reply to Readlots]

thank you so much. Really reassuring to hear that palliative care is so helpful and will hopefully help support us in this difficult time.

I think he’s scared and doesn’t really know what’s happening apart from the inevitable so you’re probably right, I think he’s protecting me. I just want to help and support him as much as possible and understand as much as possible without being too pushy.

[Readlots in reply to Supporter37]

He’s lucky to have you and you will both get through this.Take care

[NieceByMarriage]

I am sorry to hear this. In my view there is nothing to be gained by fixating on how long someone may or may not have left. It sounds trite, but "hope for the best and prepare for the worst" would be my approach. In other words, if there is any paperwork or other affairs to get in order then it would be as well for that to be done sooner rather than later, as long as your father is prepared to address these issues. It can be very overwhelming to get bad news, so he may be reluctant, but it is always worth trying to have a sensible conversation about business matters at a time when the person is feeling reasonably calm and robust. Otherwise, just concentrate on getting the most out of every day. Try not to think about a deadline or worry about what might happen when. And I agree with Readlots' comment about the temptation to fight. That has to be your father's decision. If treatment is available he may want it - but if it is very aggressive he may prefer not. Having calm, happy days is the most important thing, and I hope he has LOADS of them yet to come. Wishing you well.

[Supporter37 in reply to NieceByMarriage]

Thank you. He doesn’t want a transplant and if cancer is found he doesn’t want chemo.

He is very much discussing his will, finances he wants to leave to my baby and talking about the fact I’m his power of attorney so I can only assume it’s the worst case and he maybe has a year to 18 months. I guess I’m just trying to prepare myself but also plan nice memories while he’s still able and feeling well enough but already he’s exhausted and unable to eat a lot so I think I know the answer really.

[Pie-eater in reply to Supporter37]

I wouldn’t dismiss chemo completely, I had TACE ( Trans Arterial Chemo Embolisation ) where they go into an artery in your groin and up to the liver and inject the chemo directly into the tumour. It was just one day in hospital and taking it easy the next day, no running etc. It’s not a cure but it did give me a few years before I had to have a transplant.

[Roy1955]

Sorry your having to go through this.Nobody can predict how long he will live but if the Drs are talking about palliative care its likely to be less than you suggest.

[Supporter37 in reply to Roy1955]

Thank you for being real with me. I just want to feel prepared