Confusion

[Bs1524]

My husband getS a little confused and today for instance he stated I had told him something yesterday (it was really trivial about where something is kept in the kitchen). I pointed out it was this afternoon, he got upset with me and has stomped off to bed. Is it better to not contradict or mention when he has confusion? Obviously keeping quiet means a quieter homelife or does he need to when he is getting muddled.

[Hidden]

No-one likes being corrected all the time & reminded that their brain isn't functioning properly. Pick your moments & be guided by your intuition. Minor mistakes are arguably best left to pass by while big mistakes may be worth pointing out gently depending on the situation.

[Bs1524 in reply to Hidden]

Yes I can understand and will try my response was instinctive and as it was so trivial (where the custard was stored) . I keep forgetting that he is no longer the person he was.

[Bs1524]

He has just shouted me wanting to know whose car was in the drive. It is ours.

[Hidden in reply to Bs1524]

If he's that confused he should probably be in a hospital. Encephalopathy is a sign of severe liver deterioration.

[Bs1524 in reply to Hidden]

I know I am so worried he has a telephone consultation with his Heptologist this week. I know some of his confusion is down to lack of sleep which they cannot really help with.

[Rachel299]

It's important to try and find a balance, arguing or correcting etc can sometimes seem to cause problems because of other personality changes which are difficult and upsetting to live with. In our case when this happens we remind him to take more lactulose and it usually helps, there are other medications as well so make sure you let your doctors know as it can be very dangerous. My dad looses the ability to remember how to walk when he's really bad and it's a case of us having to coaks him into taking the right medication or lactulose. Take care x

[Bs1524 in reply to Rachel299]

It is odd as he has always been good about taking all his meds including lactulose. He has admitted sometimes coming downstairs he gets stuck and cannot move.

[Rachel299 in reply to Bs1524]

Yeah my dad's liver nurse said just to take another lactulose if this kind of thing occurs, later dad sometimes admits that he may have missed a does or sometimes if he's taken painkillers which cause constipation it brings on the confusion and extra lactulose or these orange powders if really bad brain confusion. It's a balancing act with it all at times and he can be really sure of himself that he's not missed one etc but you never know. It's a hard illness to manage, what works one week doesn't the next sometimes. The main thing is to get lactulose down him as soon as you recognise the signs because it's dangerous and at times my dad's got to the point where he literally wants to walk but can't and he's been stood half crouching for hours and I've had to actually carry him.

[X19Dave]

my wife used to get confused a lot pre transplant from what the hospital told me it is when the blood get very bad and poisened (sorry for the spelling) when it used to happen I would take her to hospital as that is what they told me to do and they would transfuse blood and plazma to get her blood right again I would question and push you hospital to do something you could just take him to A&E they would be able to check blood state

[Bs1524 in reply to X19Dave]

Hi thanks for the information, he has managed to sleep a bit today and that has helped. I am going to explain all this to the consultant and hopefully find out more about what we should do and who we should call. The hospital near us with an A&E is not connected to the hospital that his consultant is at. It is oversubscribed and wait times have been 9 hours he wouldn’t take hanging around for that length of time.

[Hidden]

Good afternoon Bs1524,

I can see you are getting lots of support from our forum members sharing their experiences.

I also notice you are planning to speak with the consultant this week.

I wonder if there is a nurse specialist linked to the consultant team ? It may be worth asking this week - they can be a very useful point of contact and support for you.

It would also be worth asking about a care plan - what to do if certain things happen.

I am sure you already have access to it but I have included the Hepatic Encephalopathy information

britishlivertrust.org.uk/in...

Also, you can call the nurse led helpline on 0800 652 7330 Mon -Fri 10am-3pm.

Take care of yourself too,

Trust9

[Bs1524 in reply to Hidden]

Thanks, good tips there I have made a note we have quite a list of questions to ask now

[AyrshireK in reply to Bs1524]

I hope one of your top questions is "What progress has there been on the transplant assessment?" Don't be fobbed off, chase it.

Katie

[Bs1524 in reply to AyrshireK]

That one is on the list right at the top

[AyrshireK in reply to Bs1524]

Good stuff and good luck.

We are off to Edinburgh later this week for hubbies delayed endoscopy and hopefully consultation (his liver consultant does his scope). Just got his ultrasound report back with no major changes noted so not too bad.

Katie

[Bs1524 in reply to AyrshireK]

Great news on the ultrasound hope all goes well with the endoscopy too x

[lyn3]

Hey..My hubby is the same with his confusion etc,some days arent too bad,but most days is bad, i used correct him or even loose my rag with him ,but i realised it wasnt helping any of us, so now even though its hard i dont correct him or remind him of how bad he is,i see it as how would i be towards a 3 year old, because thats how he is like a lot of the time. Make a note of when and how hubby is and keep it for when he sees the dr or consultant.

[Bs1524 in reply to lyn3]

That’s a good tip I will start to do that. I am still,coming to terms that he isn’t the same man and to keep my lips zipped. This morning I helped him put his shoes on (his feet had swollen). Two minutes later he asked me where his shoes were. He is having trouble with his dentures fitting despite getting new ones made lockdown happened before his final fitting so I find his speech difficult to understand I think he some slurring of his speech now as well so I have to ask him to repeat things and that makes him cross as well.

Pam x