Stories of experiences- elderly FIL, alcoholic, DTs- major confusion

[EllieJai44]

This may be a long one but I will try to shorten as much as possible:

72yo FIL, alcoholic, been drinking since early 30's, but probably dependent on it last 10 ish years.
Last Feb admitted to hospital with tremors and high heart rate, very unwell, not been eating etc
Went through alcohol withdrawal, had the confusion, major tremors, agitation but started eating really well, was in hospital 3 weeks and came out slightly confused but better than he had been- was always obsessed with having his car keys which now we know is where he's been hiding his drink (only known this year) so we think he started drinking again in secret about 4-5 days after coming out.

Roll round to this year, noticed just before Christmas going downhill, very frail, unsteady on his feet. Come February he was having episodes of confusion that came across as dementia like and then all through March got worse and worse, lots of falls, hadn't eaten properly for over a month (that we know off, probably been longer), lost lots of weight (53kg current weight) and then GP told him to stop drinking, he didn't, was driving to get alcohol secretly so we took it all away. That was bad idea as he went through bad withdrawal.

He's 13 days post alcohol, still in hospital, but his confusion is worse than ever, he thinks he's back 40 years ago, doesn't remember people visiting or names, making up stories, seeing things that aren't there, eating imaginary dinners like doing the actions etc and is so so unsteady on his feet.

Everything we read online says the confusion should only last a few days but this is worse than it was ever before so looking for experiences of people who have had family members go through this and did they recover back to some normal capacity or was it permanent?

TIA

Wernicke-Korsakoff Syndrome?
is he on high dose vitamin B?

@EllieJai44 - yeah at 13 days, it’s not likely to be withdrawal symptoms. Possibly as @Jaffaisitacakeorbiscuit says or possibly early stages of organ failure - presumably the docs are checking all his bloods?

Very similar my DF and in his case, it was alcoholic kidney failure which progressed to multi organ failure and he died a few days later.

I’m sorry you are going through this 💐

Not sure the hospital don't seem to be doing much or concerned they keep saying it's the withdrawal but I think it's too far past that, I'm definitely going to be mentioning that syndrome tomorrow and demanding more tests, they want to discharge him but he's in no state to care for himself, but they send the care team round to talk to him and ask him questions, he says he's fine and they take that as he has capacity, despite us telling him he doesn't! I mean today alone he saw a steam train out of the window where he's on the second floor and overlooks a car park, he saw people walking around that 100% weren't there, he didn't remember some of his oldest friends and he thought he was in a church at one point, all that was within an hour.....

They were testing his bloods daily, what for I have no idea because no one seems to be consistent and we can never get to talk to a doctor, he's eating well finally, I know he's on Thiamine (B1) but not a high dose

I would be worried he had an infection 😕

Definitely no infection, when he was admitted he had that all checked and his infection markers weren't raised, he also has no other symptoms of an infection

Has he had scans for his liver and cirrhosis diagnosed?

Has anyone mentioned Hepatic encephalopathy?

It sounds very similar to how my relative was, when they were hospitalised.

Theirs was Korsakoffs.

No to all that, they do liver function bloods, some come back abnormal, some have been fine, but they just keep saying it's the withdrawal, my plan tomorrow is to ring first thing and ask for a doctor to call me because they keep trying to discharge him in his current state and refer him to the community alcohol team

I'm so sorry you're going through this. He does sound very unwell. I would definitely ask to speak to the doctor in charge of his care and the hospital discharge team. He doesn't sound well enough to be discharged home. Has anyone talked to you about what his prognosis is. It really doesn't sound like he's safe to be discharged without a suitable care plan in place.

It could very well be alcohol related dementia. A family member has this. Lots of falls and seizures and blows to the head which must have clouded things for a while, but there’s no question anymore that it’s dementia, and it has progressed quite fast.

Still drinking (even though a long spell in hospital detoxed him) because his equally alcoholic wife needs him to drink with her.

I've read up more on this syndrome this evening and it fits so so well tbh! It's like he's a dementia patient but with added in hallucinations! He remembers parts of what's happened but he takes snippets of interactions he's had and then builds a whole story around the rest that isn't true and really far fetched.

We are liaising with the care team and hoping to get his mental capacity assessed properly, he definitely needs care as he can't walk more than 10 steps even with a frame! No prognosis, we've been told they don't know, only time will tell, he needs to not drink etc

Yes exactly that. It was like dementia, hallucinations, memories from long ago, and some frankly bonkers made up characters all mixed together!

It would have been comical if it wasn't so bloody tragic

UTI get hospital (if haven't already,should have ) to test urine. UTIs can cause people to get severe delirium and all kinds of symptoms that mimic dementia/out of character

Yes exactly the same! He was pointing at the nurses saying that they were people he knows from years and years back, like you say could be funny at times but then you're very quickly reminded this isn't right- did your family member get worse or better or??

Been tested before hospital with GP and then tested again in hospital and infections definitely ruled out

I'm sorry OP, it sounds like he's now too unwell to live independently, particularly if he's got such poor mobility and seems extremely confused. Good that you're liaising with the care team about a mental capacity assessment and they can advise on whether he might need to be in a residential care environment or a nursing home. I know that's an awful thing to contemplate and I'm sorry you and your family are going through this

Yeah it's just so complicated because he's got 2 properties, one eith a tenant and my husband doesn't have power of attorney, he's an only child and only relative left of his dad's, we hoped before this when he was just having a decline in mobility and self care that we could all sell up and get a place with an annexe for him to live in but that isn't gonna happen now but he lives alone in a house with stairs which is not at all safe for him anymore

They improved enough to come out of hospital, gained some weight, stopped hallucinating (!) etc, but didn't go back to 'normal' and still needed a care package putting in place.

Unfortunately they also went back to heavy drinking. They're now in a nursing home, and if I'm honest, don't really know who they (or we) are. But at least they don't seem troubled, and they're being looked after.

I hope you get a more positive outcome with your FIL.

Oh that's a shame, I'm so sorry your family has had to endure that :( it seems once the addiction has taken hold it's hard to shake away from it!

Thank you. Yes it's a bugger of a condition.

To be honest, from a selfish point of view it's a relief now that they are where they are, being looked after and being safe. The years prior were horrendous really, some of the states and situations they ended up in. Crazy to think how something you drink can literally destroy the brain. Ironically, their liver was never a problem!

Please make sure they rule out other causes of confusion in men such as kidney infection and glioblastoma.

if he is hallucinating and ataxic (unsteady walking) he is likely to have Wernickes encephalopathy (acute phase of the wernicke Korsakoff’s syndrome) they need to carry on treatment with high dose Pabrinex - 2 pairs three times a day intravenously for at least five days. This is NICE CG100 guidance. Quote it. Have they done it? They need to check magnesium and make sure it is normal as you need it for pabrinex to work. Converts thiamine to its active form. Then, once the hallucinations have subsided (they = resolving delirium) they need to do structured cognitive testing, get a neuro opinion, get a neuro radiologist to report his head scan commenting specifically about alcohol related brain damage and a cognitive assessment of functioning from an OT. The best is a multiple errands test. The ward environment can often mask Korsakoffs/ARBD because there’s a lot of contextual information. Ask the doctors whether he meets the modified Oslin criteria for ARBD. If they look confused tell them to look it up. He’s 73 - they need to look at a possible differential of other forms of dementia too and not just write things off as alcohol withdrawal when it is manifestly more than that.

with good nutrition and an alcohol free environment things can improve. a good resource is
https://arbd.net/

good luck.

Thank you for this! They told us he was on a detox treatment for 4 days and they were giving something to improve his magnesium levels during this too so it sound very likely this was the treatment he had and actually during those 4 days he was fairly coherent! Once they stopped that treatment he got so much worse and now is very very confused again and hallucinating etc, I have been trying all morning to speak to a doctor but they are refusing because the doctors are too busy, which I get but he's been in hospital 10 days now and we've not spoken to a doctor once, only the nurses!
We are trying to be patient but at same time are nearing the need to speak to Pals as nothing seems to be moving forward