My mum was diagnosed with liver disease on the 2nd January 2025, she spent 2 weeks in hospital very ill, her improvement over the 2 weeks was incredible, she is severely malnourished but was looking the best I had seen her in a long time.
she spent 2 weeks at home before being readmitted through a and e, she declined over a week where confusion started to kick in, she suddenly couldn’t do simple things like use a remote. The hospital wanted to readmit my Mum but she refused, however she then got increasingly worse at home and suddenly one morning couldn’t walk or speak which is when we took her into a and e.
They gave her some saline and she has started to improve, she can now talk although still very confused and is waiting on a bed in a the gastro ward, they want to build her up as she is severely malnourished.
Has anyone experienced such an extreme episode of confusion to the point of one day they seem coherent and then the next they can’t walk or even talk? I am wondering if there was anything we could do to prevent her getting this bad when we first saw neurological signs? She was already on the lactulose 20mg, 3 times a day and I have been administering this so she was definitely taking it.
we really haven’t had any information about liver disease and what to expect, any information would be much appreciated, it’s been hard work trying to get this out of the hospital.
she originally presented with ascites and has liver cirrhosis and now showing confusion, she is also severely malnourished. The ascites is being managed well with meds and the rest of her bloods have improved significantly since the start of January.
It has been a struggle caring for my Mum alongside work, does anyone have advice they can offer on this?
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Sadly it sounds like mum had an acute episode of Hepatic Encephalopathy which can come on quite suddenly - moving your bowels frequently is key together with proper hydration. My hubby ended up with severe HE going down hill very quickly. On admission to hospital he was found to be severely dehydrated and this had exacerbated matters.
Hubby was on Lactulose, Rifaximin and latterly Lo-La (L'ornithine L'aspartate) but HE was really bad.
If Mum's body is consuming her own muscles it can contribute to toxin build up in her blood stream so good nutrition is important - she'll more than likely need some supplementation to help her get sufficient nutrition (proteins and carbs). My hubby stopped being able to eat at all due to his HE but thankfully got a transplant in time.
You can get good information on cirrhosis and Hepatic Encephalopathy at the BLT website.
Poor you, such a worry. Firstly, call British Liver Trust, they have people who will help you with any info. This is a long shot but I've recently had a diagnosis of Parathyroidism and Hypercalcimia, which have similar symptoms; fatigue, rapid confusion, constipation (she's taking Lactolose), anxiety amongst others. In November 24 my thryoid test were normal, then last week they were high! My condition was found by chance and is treatable. Firstly, call British Liver Trust.
With love to you and your lovely Mum, I hope she is starting to improve and once on the gastrology ward they can she what is causing your mums symptoms, with her having ascites she can also be very vulnerable to infections. Unfortunately all that your mum is experiencing goes alongside liver cirrhosis and only gets alleviated with medication and symptoms management. I also looked after my mum, I downloaded all of the British Liver info and that became our go to, Unfortunately many hospitals don't provide any literature but many are improving their services. Also do talk to your mums consultant, they are normally very happy to talk with patients main carers, you can always contact their secretaries and they will forward your messages. I know your mum will be very much in control of what her wishes are, but you can read up on the information and advice given to know what can happen and if problems arrive not to panic but know how to get your mum quick help. Xx
I can’t thank you enough for your replies, they really mean a lot, we have felt very lost in all of this and to be honest have had a really hard time getting information out of the hospital, I really appreciate they are completely overrun and understaffed but it has been frustrating. This has really helped us in not feeling so alone in all of this.
Unfortunately my mum spent 5 days in the a and e department where she was basically in limbo, they were giving her her prescribed meds but not much else. She did receive one lot of saline about 12 hours after being at a and e but we then were trying to get her more fluids intravenously as we thought she was dehydrated but it took 2 days before that was listened to as they were so overrun so things worsened for my mum.
She spent about 36 hours in a wheelchair in an and e before she got into a reclining chair and she couldn’t be left during this time because she was just in a waiting room inbetween being seen by doctors and my Mum was so bad she couldn’t event talk, walk or hold her head up, we had to make sure she didn’t fall out of the wheelchair. I am glad to say she is now on the gastro ward. I was just wondering does this always have to be done through an and e when she has one of these episodes? From what I have read the longer this is left untreated the more likely of permanent damage to the brain, I worry about an and e taking so long each time.
We also found that we kept telling the medical staff that she had liver disease and that the confusion was likely due to that but no one seems to be taking this in, we kept having to emphasise the confusion was not normal, they kept thinking the confusion was part of her being “old” (she is only 69) has anyone else had struggle with this, we have really had to emphasise so much that this is not normal for my mum.
I have downloaded some information regarding HE front he British liver trust and this has been very helpful so thank you for that advice! It has definitely given me more questions to ask. I have wondered whether the diuretic she started in January could be contributing to this at all. My mum was very ill by the end of December but still seemed mentally coherent, the mental confusion seems to be a new thing since her being treated for liver disease, I had thought this was a coincidence but I was wondering whether anything such as the diuretics could be contributing to this, I only mention those as they are mentioned as a potential factor on the British liver trust HE information sheet and does factor in with when her episodes of confusion seem to have started.
I have experienced that, in the event of e.g.: struggling to get sensible things happening at Hospital / poor communication between departments to my detriment / lack of reference to healthcare records electronically available in one department by another one - despite my prompting:
The Hospital's Patient And Liaison Service (PALS) can be very helpful in sorting things out e.g. by their being able to email the appropriate departmental contacts on my behalf:
One thing you could also discuss with PALS, particularly to help explain the temporary nature of your Mother's confusion, ongoing liver treatment, medication and vital nutrition and hydration requirements - is the possibility of making use of a Hospital / Healthcare Passport.
Usually this is a document you help to complete and then an electronic copy can be added to your Mother's patient record accessible at the Hospital A&E or other unfamiliar departments. You can also keep a printed copy in your Mother's hospital admissions overnight bag.
(Some health trusts have their own template passport or are more familiar with this protocol for patients with a learning disability or for those people who have come arrived at Hospital from usually living in a nursing / care / supported living home).
The passport can be a way of the information not just being delivered by "your voice". You can be assertive that your Mother has a healthcare passport which needs to be referenced.
Usually there are areas of the passport to describe topics such as: "what is usual for me", "my Doctors and medications", "my long term health conditions and allergies", "my faith and food requirements", "when I am distressed this is what helps / harms", "my advance health decisions (do / do not consent to certain things happening to me)".
The health passport technique can also help - as a sort of half-way measure - if someone has deteriorated quicker than the opportunity to get in place a Health Power of Attorney arrangement. It is not a formal document conferring rights etc. but it can aid communication when the patient is at the disadvantage of being incapacitated from being their own self-advocate.
When helping an older friend of our family who did not have any relatives (acting as an informal, non-relative, advocate): I became concerned the ward was not correctly managing - a serious ongoing condition unrelated to their current admission, their hydration, their pain management, that an anaesthetist was blocking their potential operation for spurious reasons not applicable to the patient, the patient was stuck in an inappropriate ward, that the patient had now acquired an infection in Hospital but this was not being addressed with suitable priority ...I contacted PALS and asked for them to help me to speak with the Hospital Social Worker most appropriate to the age group of the patient of my concern - which happened swiftly - and all manner of sensible things then swung into action. This also meant when I could not attend the patient in Hospital (I lived 3 hours drive away) I was able to contact the Hospital Social Worker / PALS as "proxy me" to exert some beneficial influence if one of the patient's visitors had expressed a worry to me by phonecall.
Some national organisations for patients with particular health presentations have their own health passport suggested templates designed to improve the the outcomes for patients with their particular needs. E.g. the National Autistic Society has one. (I am not aware of the British Liver Trust operating a passport template - as a newbie, I am happy to be corrected on that!).
If a particular Hospital or other NHS service seems to act like you are suggesting something from another planet (yep, first hand experience on that score); it can be worth contacting the patient involvement team at the Integrated Health Board (ICB) for your County. An ICB often has a number of special interest patient forum groups - some of those may promote a particular template health passport tailored to the needs of particular patient communities e.g. an ICB Neurodivergent Passport , or a forum for patients managing a mental health condition, one for patients with disability accessibility reasonable adjustment requirements etc.
Likewise, you may be able find their is a carer's support network in your area - who would no the successful strategies and contacts in your locale
I hesitate to add to your workload as a carer with all these suggestions. However, some advance effort via some emails / phonecalls / completing self-referral web forms / editing a passport document - can sometimes be a good return on that time and effort investment (and may provide much needed support to you along the way).
If all else fails; it is possible the charity POhWER and their resources may prove helpful:
"POhWER is a charity who provide information, advice, support and advocacy to people who experience disability, vulnerability, distress and social exclusion.
POhWER was set up in 1996 by service users who, tired of others making assumptions about their capabilities and views, wanted equal access to information and a voice of their own."
(I have not used their NHS Complaints Advocacy Service ... however, I have stored their details in my Contacts smartphone app ...just in case I were to find myself in need of their guidance when access to the internet was not possible):
If nothing else, hopefully, simply having knowledge about the existence of each of the above, stashed in your Mother's treatment folder, should the need arise, might help you to feel:
- less lonely with some of the challenges,
- that there are other potential sources of support,
- you don't need to address everything all at once (there are potential escalation routes available),
- there is some measure of solidarity / solace in realising it is not only you trying to navigate the carer's pathway (without map or compass!),
- carers and their wellbeing need nurturing too,
and above all else:
...you are doing you best and your Mother is fortunate to have you fighting her corner.
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