Apologies if this is a bit of a long one. I (26 F) posted a little while ago about my mum (57) who was beginning to be really ill with cirrhosis. I didn't know what to expect and I was hugely touched by the honest and kind replies I got. They were incredibly helpful. So, now that things have deteriorated, I thought I'd post again in case anyone knows what this is like and what might happen next.
Since I last posted, things have got a lot worse, but this last week in particular has seen a steep downwards trajectory. My mum has had ascites for around a year and has been going for regular drains (every 3 weeks), but when she went for her latest drain, they refused to do it. She doesn't allow us to speak to any of her doctors so we're not sure why. A couple of months ago she got spontaneous bacterial peritonitis and had antibiotics for that. Then a few weeks back she got a UTI and has had antibiotics for that too. She also has what looks like a big hernia sticking out of her tummy. I guess it's probably because of that, or maybe because of infection risk that they don't want to do the drain.
She's double incontinent so she wears incontinence pants and sits and sleeps on absorbent chair and bed pads. The house smells really bad from it, even with my dad washing the chair and bed pads every night. She's embarrassed about her incontinence and sometimes she doesn't throw away her pants, she hides them instead.
She was throwing up blood regularly around 2 months ago and then had an endoscopy - they gave her beta blockers presumably to lower the risk of the oesophageal varices rupturing.
I don't live at home anymore but my dad does and he keeps us up to date on how she's doing. He said that recently she's not been able to move and walk around on her own without his help because it's too painful for her.
My 2 sisters and I went to see her on Saturday and we got a huge shock. She was sitting in the dark on her own crying, presumably from the pain. She had slept in her chair downstairs overnight because, even with my dad's help, she hadn't been able to make it upstairs. Her legs and ankles were swollen. The jaundice was worse than I've ever seen it. She was missing lots of teeth. She could hardly say 2 words without running out of breath, which was the scariest part. And she seemed really confused, saying that she would "come downstairs in a second" even though she was already downstairs. On Saturday night my dad managed to get her up the stairs and into bed but it took about 45 minutes - she had to stop and sit down after every few steps and she was yelping in pain the whole time. He told us that last night (Sunday night) she slept downstairs in the chair again because she was in too much pain to move.
She's still drinking, about a bottle of wine a day as far as we can tell, though I'm concerned that if she reaches a point where she can't physically access her drink then she'll start to go through withdrawal on top of everything else, which seems like a recipe for disaster.
My sisters and I were really upset to see her like that and tried to talk to her about her options, suggesting she might be more comfortable if she went to hospital for a few days but she refused and said home was the best place for her. We're worried about my dad having to care for her when she's getting less and less capable so we've asked him to look into hospice help. We had to push quite hard for this - he's worried he might be overreacting, but I think if she's struggling to breathe, she's incontinent, in pain, and can't move on her own, then we need some help.
I'm finding it all really difficult because there's a lot I don't understand - why isn't she able to have the fluid drained? What might happen next? How long might she have left? Can it get worse than this? How can we make her more comfortable if she refuses to go to hospital? What would happen if she got a referral for hospice care?
So I thought I'd post on here and see if anyone has been through similar. I went to work as normal today but got upset during the day and they sent me home. They're really understanding but I don't like feeling like I'm not coping well and letting people down because of it! I'm worried about being off work because in December I had a few days off, thinking she was nearing the end, and she's still here 4 months later. It's so hard not knowing what to expect, so if anyone has any experiences they can share, I would really appreciate that. I know every situation is different, but there's definitely comfort in knowing others have been through the same.
Thanks so much for reading this, I know it's very long, and I appreciate anyone who has taken the time to get to the end!
Manta
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Manta2
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So sorry to hear how bad things have gotten with mum. Sadly, she is now getting to the very severe end of liver disease and she's unlikely to improve any with her continued heavy alcohol use.What happens next is likely to be a big medical emergency - she's showing signs of ascites, oedema, it's affecting her lungs and breathing and probably also her kidneys. It's likely that sometime in the not too distant future she's likely to start going down hill further as her organs start to fail.
The British Liver Trust has a page about Planning for the Future including palliative care options and some help from the Hospice is likely to be a good move especially as support for your dad. britishlivertrust.org.uk/in...
You need to look after yourself in all this because things are potentially not going to be pleasant going forward. Death due to liver failure isn't a nice thing to witness and we have several members who have lost loved ones to the condition.
Thank you so much for your reply ❤️ I've had a look at that page, really helpful. I think you're right - it probably won't be pleasant going forward. I'm really lucky to have my sisters and my dad, we're a good team and we'll get through it. Really appreciate you taking the time to read and advise
I’m so sorry to read your post. I reread your last one which really moved me as well. I remember writing my reply to you at the time and was struggling to know quite what to say. I’m so sorry things have now got so bad. I’m sure it’s awful to watch. Unless she stops drinking things will not improve. I’m not suggesting she just stops, that would be dangerous, but without stopping the flow of alcohol into her body her liver will become increasingly weak and will soon fail. She is showing all the signs of deteriorating liver disease. It’s likely that an emergency admission to hospital is coming, so perhaps trying to persuade her to access healthcare now may help the situation. If nothing else for yours and your dad’s sake. A call to her GP as a starter would probably help. Personally, and I’m not a doctor, I think she needs to be in hospital to get her stable and get her detoxed. Hospice care may follow. I don’t think she should be at home. I’m sure persuading her of that is much easier said than done though. She can refuse treatment. Maybe a family conference to agree a line of action may help. I’m so sorry you’re in this position. Please take care of yourself. Warmest wishes to you.
Thank you so much. I've contacted her GP today so hopefully we'll be able to get somewhere. I agree, it doesn't feel right for her to be at home just now. Today has been a good day for fact finding and thanks to replies like yours I'll be better equipped for the conversations with my dad about where we go next. I really appreciate it 🌼
I'm no expert but I'd say push for the local palliative care team to get involved. There's lots they can offer and the person doesn't need to be imminently dying for them to start supporting you.I'm sorry you are going through this. I have problems getting details about my ex's condition but I do know he had 4 lots of ascites drained during his last admission and that was over the course of 3 weeks. It could be that your mum is just too ill to cope with what seems fairly invasive.
Thanks so much for your input, it's so so helpful! Sorry to hear about your ex. I think you're right, she's just not well enough for it at the moment. Fingers crossed we can get help from palliative care for her. Really appreciate you commenting 🌸
I am so very sorry Manta, you are in an awful position but your Mum needs medical care right now, she is very poorly but not beyond help. She absolutely must not detox without qualified supervision and you can't do that at home. The GP will advise but I think hospital, hospice or rehab are the only places she would be medically safe. I am about the same age as your Mum and my heart goes out to you. You need to find support for yourself too.
Thank you Wendy! It's so helpful to have people say these things, makes me feel less like I'm overreacting. I'm really hoping we can get hospital or hospice sorted some time soon. It was v kind of you to take the time to reply, so thank you 🌟
Please please try to get some professional care/help for your mum - hospital or hospice referral seems imperative. I can’t begin to imagine how your poor dad is coping with all you describe and without some help his health is definitely going to suffer too. They can’t go on like this. You all have my deepest sympathy. Such a difficult situation.
Thank you Lantana100. Definitely seems like palliative care is the route we need to take. I've contacted her GP today, hoping that gets the ball rolling. My Dad is coping as well as he can for now but he can't do this long term. Really appreciate your comment ❤️
That's super helpful, thank you. I think hospice at home could be a good compromise and something she might be more likely to consider than going into hospital. It's really useful to know she'd be able to continue drinking, that might give us more of a chance of convincing her to get some proper care. It's so kind of you to take the time to read and respond, thank you SO much. 🌷
Sorry to hear your story x it's really hard to have any answers to ne honest as we are all different I personally have decompensated liver and ascites only thing I can suggest about your mum is a possibility has she given up hope ? Trouble is when you feel at the bottom and in pain all the time you do just want it over with you don't see anyway out of it ( I'm sorry if that sounds upsetting but it's true ) however obviously the best thing she can do is to give up the wine completely even if it's a detox in hospital for a few days mentally she will feel abit better and will want to fight it reason I say this is because I felt the same so she might be refusing the drain in hope of it ending sooner unfortunately not having the drain will also build up toxins in the body like ammonia and will cause extreme confusion ascites can also cause very shortness of breath the incontinence could be because of the build up but its kind of part and parcel with the liver bowels ect however the wine is not going to help either im sorry if im not much help but as i say we are all different my best advice to you would be make sure you take care of yourself and obviously your dad its a very long and very hard road for all involved a hospice would be a good idea as they will have proper training and meet her individual needs another option could be you or your dad could try to talk to her doctor stating that she is not of sound mind and incapable of making her own decisions I wish you all the best and happy to talk anytime lots of love to you all x
Hi Paul43. Thanks so so much for your reply, you make some great points. I've had a look into all of that today and it's good to be equipped knowing what the options are. I think she partly has given up hope - she's probably exhausted and in a lot of pain, I'm just hoping something can be done to make her more comfortable. Thank you so so much for commenting, I really do appreciate it. 💐
Hi,
If you are UK based, please consider calling the British Liver Trust nurse helpline on 0800 652 7330 Mon to Fri 10am to 3pm and we can have a supportive chat.
Thank you. I did exactly that, so thanks for the suggestion! It was incredibly useful, I spoke to a lovely woman who gave me some fantastic advice. Really appreciate what you do. 🌷
Manta! I really sympathise with you cos you're facing a very difficult and frustrating situation. I also feel for your suffering mum,cos hers is a double edged sword; physical and psychological pain. Your dad will also be in a tough place! If only you could persuade your mum to steer clear of the bottle! That would go a long way towards helping her situation though there's now no telling how much relief it would give her. You can only hope for the best for your mum and support your dad every way you can.
You're so right about it being a double-edged sword. A really tricky situation for her to be in. I've learnt from years of trying that I won't have much luck trying to get her to stop the drink. Really appreciate your comment, thank you!! 🌸
I’m so sorry to hear what your Family is going through. I’d agree with what others have said. I can understand you needing to know what’s going to happen to help you make plans and decide what to do about work. No one has a crystal ball but what the hospice nurse told me in a similar position is that when they get worse each month they’ve got months, worse each week, they’ve got weeks, and so on. It was true for both my parents.
What is your manager like? Could you talk to him/ her and explain the you’re in? Do they have compassionate leave or special leave you could take? If all else fails get your GP to sign you off with stress. I took the decision that I’d regret not spending time with my parents and letting them down more than missing work and letting colleagues down. My colleagues showed themselves to be amazing people who stepped up when I needed them most.
Re your Mum, phone her. GP, tell the receptionist all about it and ask for an emergency palliative care referral. They can’t talk to you about Mum without her permission, but there’s nothing to stop them listening to your concerns. If your Mum wants to be at home they can put everything in place to make her comfortable and support you, your sisters and Dad.
Thank you for your reply! I've heard that about weeks vs months before, it's useful to know that there's some truth to it. My manager is fantastic and my work is so supportive. That's partly why I don't want anyone to think I'm taking advantage. I'm really fortunate to be in a position where I have kind and understanding colleagues so glad you were fortunate in that way too. I've been in touch with her GP today, just waiting on a reply and hopefully things will start falling into place. Thanks again for the thought and time you've put into replying, I really appreciate it. 🌟
I’m glad you’ve got support around you, I’m sure you’ll get the support you need once the GP is aware of the situation. Hang in there 🌸
Sounds exactly the same as my sister, albeit she was never properly diagnosed by the medical profession. Sending you so much strength and love. Will be thinking of you and your family ❤️🙏
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