End stage liver failure

[OminousCloud]

Hi,

you have given me helpful advice before so I am hoping you will be able to again - thanks so much in advance!

my dad, who lives in France, has had cirrhosis for over twenty years. He hasn’t drunk alcohol since being diagnosed. He has had increasingly frequent bouts of hepatic encephalopathy over the last four or so years, and now has few ‘good’ days. He’s very weak, tired, confused. He’s been in and out of hospital, had lactulose enemas 3x a week for a bit but the doctor has now stopped these. He’s also on rifaximin which improved his condition massively for a short while but he’s been on a downward trajectory all of this year.

I just wanted to talk to someone else who’s been in this situation. The language barrier makes it hard to understand the prognosis and what will happen, there are no hospices where my parents are and palliative care in general doesn’t seem to be as well-provided in France as it is in the UK.

I work and have children, and am not allowed to work from abroad - or I would just go to my parents’ house and work there for the foreseeable future so I could support my mum and be there if he suddenly slips away, but as I can’t do that I don’t know when the best time is to go.

Can anyone tell me what to expect? Is there a way I can know if the end is close?

thank you so much

[BritishLiverTrust11 Moderator]

Hello

We are sorry for the challenges you are facing . The information below may help you:

Chronic liver disease is an unpredictable condition. However, there are some symptoms that indicate the liver has become so badly damaged it can no longer work properly – this is known as ‘decompensated cirrhosis’. It’s important for patients with decompensated cirrhosis to have the opportunity to talk about the impact of their condition, and to think about their wishes for the future.

This information will help you talk to your hepatology team, GP, relatives and carers about how you would like your future care to progress, and encourage you to start those conversations early, so you can make your preferred care options clear.

Although these conversations can be difficult, patients and their families or carers often find that planning ahead brings them peace of mind. Your healthcare team and loved ones need to understand your wishes and be aware of your thoughts and preferences.

For more detailed information you can download our Thinking ahead booklet, which also covers end of life care in a separate section that can be looked at when you feel ready.

britishlivertrust.org.uk/in...

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

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust

[Readlots]

Hi, I’ve been in a similar situation with both parents but not in France. I was very lucky that my employer was very supportive and had excellent leave policies. Both times I dropped everything and moved in with my parents to support them. Knowing when is the right time to do this is really hard because no one has a crystal ball. We contacted the local hospice and they gave us the rule of thumb - when they are getting worse each year, they’ve got years, worse each month they’ve got months, weeks, days etc. It isn’t true for everyone but it was for us. You have to go with your gut and if yours is saying you want to be there, I’d say go - even if just for a visit to see how things are for yourself. You could contact your local hospice for advice and support even though your parents are in France.

Check what your employers policies are for compassionate leave, time off for dependents, annual leave and or sick leave. I started off with time off for dependents to deal with the initial terminal diagnosis. Then work gave me 10 days compassionate leave. My Dads GP said she would sign me off sick if I wanted her to but I went to my own GP and got signed off with stress ( because it is stressful even when you are coping because you have to).

I stayed off with my parents until after the funeral. I nursed them at home with support from carers, community nurses, occupational heath and lots of other wonderful people. If that support network wasn’t available, I don’t think I could have done it. Factor in a language barrier and that’s going to be hard. Some people would rather be in hospital but my parents each wanted to be at home. I was lucky, lots of people can’t do this. It was a privilege to be able to be there for each of them. In both cases it was about 6 weeks. I hope this helps you decide what to do. Sending you a big hug

[2022minks]

Hi there I think read lots covered alot, I looked after my mum in her last 8 months of life here in England, so we had access to nurse and hospice help. If you are able to go to help your mum or help your mum get some help in place when needed for your dad, do it. Time runs away for us all too quickly and if it is something you need to do don't put it off. My mum was diagnosed at decompensated stage she survived 5 years, I think they thought 2 years so the liver can be quite unpredictable but in her final trip to hospital once home in Dec she passed away in July. There are more notable signs as said before if declining monthly, months, if weekly weeks. Hospice staff aim her to help in their final weeks of life so contact your nearest hospice they will give you valuable advice to take with you. If you are only able to go at weekends or every few weeks you will still be able to help your dad and give so much support to your mum, sending you much love again xx

[Readlots in reply to 2022minks]

I totally agree, just being there to give Dad the occasional break, even if he just sits in another room and has a cup of tea will help. It’s being able to put down the responsibility, or share it for 5 minutes that helps.

[2022minks]

That last summer before I went to look after my mum in Nov my mum said to me "there are more important things than money" and there is, my husband was so lovely he didn't mind that I wanted to do this so we lived apart for 8 months and we skimped our expenditure to do, I couldn't claim anything as self employed but caring for someone entering their end of life is 24/7 but now 2 years it was still an honour to do. So whatever help you can give them do even if you are coming and going xx

[Readlots in reply to 2022minks]

I totally agree. I hope you’re doing OK.

[2022minks in reply to Readlots]

Iam thankyou the loss never goes but she is always with me, hope you are doing OK too xx

[Readlots in reply to 2022minks]

Exactly the same, the grief comes in waves at the most random times but I know Mum and Dad are there when I need them.

[Roy1955]

Would your parents move back to UK?

[Lilu1 in reply to Roy1955]

If they come back to uk after being abroad for 2 years they won’t be entitled to free health care in the uk unless they have bills in their name at a uk address. The overseas department at the hospital will notify the ward that they aren’t entitled to free health care and although on paper, legally, people are supposed to get the health care they need whether being billed or not.. the standard of treatment may drop.. speaking from experience.