Hi all, mum.has cirrhosis and sadly is nearing the end of her journey. Her arm pain is particularly bad despite taking pregablin and oramorph. Does anyone have any suggestions on anything else that might help? She is also very agitated and confused. Does anyone know of anything that can help with this either?
Many thanks everybody
Sorry to hear mum is having such a rough time. It must be awful to see her in pain and confused.
Regarding the confusion is mum on both Lactulose and Rifaximin for symptoms of Hepatic Encephalopathy. She needs to be moving her bowels a few times a day to rid the body of toxins which build up and then cause the confusion and agitation symptoms. It might help a little.
As regards being close to the end, is she under any sort of palliative care team? She should be receiving some sort of proper end of life care who should be able to help manage her pain. GP should be able to refer her for this or to one of the local hospices - you don't have to be an inpatient with them often they have carers who can visit at home.
Pain relief at this stage shouldn't be such a big issue, I am surmising as you say she is nearing the end (sadly) that any medication she is now given isn't going to make much more difference to the damage to her liver, it is now about making her as comfortable as possible.
Thoughts with you at this very sad and trying time. See if you can get her referred for palliative care and some medication for the HE.
Best wishes, Katie x
Thanks Katie, my mam is on a palliative care ward but is going to a nursing home today. She had had trouble with her bowels and has been given laxitives which are now working thankfully! To be honest I don't think the team here understand her illness. She is so variable from one day to the next there seems to be very little in terms of a planned approach to her care generally. I will speak to her Gp as soon as we get out of here. He is Fab and has known her for years. I hadn't realised that hospices can help when you aren't an in-patient, I will check that out. Will also make sure the laxatives are kept up too, thanks very much for the advice it's been very useful!
Claire x
Hi
I completely agree with Katie that support from a palliative care team is extremely important at this stage to alleviate the symptoms you've raised - ask the liver team or your Mum's GP to make a referral ASAP
As well I hope you are getting the support you need as this is a hard time - discuss your support needs with the palliative care team too.
Very best wishes
Andrew
I'm so sorry to hear this 😭😭 xx
Sorry to hear this too; hopefully she can be pain free and as comfortable as possible xx
So sorry to hear about your mother. I am here if you need to talk, I lost my dad to cirrhosis. Thinking of you and hoping she feels ok.
Its so important that she a a regular bowel movements so the toxin dont build up as its can be a really scary time i had waking nightmeres thought id been kidnapped ,but once they had the toxins under control waking nightmeres got less.
Hi regards the confusion it's important to drink plenty and go to the toilet a lot everyday hope that helps x
Hi Turner5 , I have been in a similar position to you 3 yrs ago with my father but his was not liver related but has all the same symptoms. He was on oramorph and a very slow and steady flow of medazalam through a feeder. It's upsetting to see and I send you big (hugs) .. my blessings to you and your mum 💐
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