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Confusing diagnosis (again), not sure if Dad is dying and can't cope

(9 Posts)
permanentlyexhaustedpigeon Wed 07-Sep-16 17:21:48

Need to unload as I can't really talk to anyone IRL about this.
A couple of years ago, my Dad went into hospital and slipped rapidly into a coma. He had been drinking a lot and displayed all the signs of a thiamine deficiency; after about 3 months he came to and was discharged from hospital a month later with a diagnosis of Lewy Body Dementia.
After a week or so at home, he was - in his own words - perfectly fine. He could climb stairs, have a perfectly lucid conversation and was even declared fit to drive after a month or two. He stopped drinking, ate well and seemed to be back to his old self. He had been in such a bad way beforehand that he'd had the last rites and the hospital had been talking about him needing to go into a specialist care home shortly before he was discharged and appeared to 'turn the corner'.
And for a few months, everything went well.

Fast-forward a few months, and he has a meeting with his doctor who tells him - according to him - that it's OK if he has a drink every now and again. I'm a bit dubious but don't have any evidence to challenge this, and he seems to have it under control - for a while. Gradually he starts drinking more and being more and more apathetic about everything; starts saying odd things and doesn't seem quite right. Eventually I become aware that things really aren't right at all, that he's drinking a lot, not really eating at all and doesn't seem to be quite registering things (such as completely failing to recognise that DD lives in my house - she's six so not easy to overlook!). He is admitted to hospital and goes into a coma again.

His liver function and vitamin levels are apparently absolutely fine, but he has been diagnosed with either Korsakoff's syndrome or alcohol-related brain damage (nobody seems sure) based on his brain scans. All the doctors seem certain that the damage is irreversible and that he needs palliative care from here on in. He has aspirated liquids and had another crisis which we didn't expect him to survive, but he has pulled through and has moments of consciousness.
Doctors are talking about discharging him to a nursing home for palliative care as they are quite clear that all that can be done is to keep him comfortable; his family and friends are hoping that he 'turns a corner' once again and will make another miraculous recovery.

I really ought to be hoping the same, but I don't think I can cope with the uncertainty. I had resigned myself to the fact that Dad was on a downward spiral (have signed all the DNR documentation and so on) and wouldn't regain consciousness, and now that he appears to be doing so at times, I find it even harder. The week or so prior to my bringing him to hospital was one of the most dreadful periods I've had, and it felt like I was helping a complete stranger who happened to look like my dad (I also cared for my mum when she was dying of lung cancer - which didn't feel like this at all). DD is scared of 'Grandad acting weird' and I can't take the idea of going through it all again and again.

Sorry for the complete self-pity: everyone around is saying I need to be strong and upbeat, and I don't really feel like that at the moment!

IgrainePendragon Wed 07-Sep-16 17:57:14

You poor thing. Uncertainty is very hard to cope with, and when your Dad doesn't even seem like himself any more and you had resigned yourself to him not regaining consciousness, it must be very scary to think that you might have to go through the whole thing again.

I really don't think you need to be strong and upbeat. Be kind to yourself and if possible try not to think too far ahead. Have you got any support?

I wish I could say something to help but I just wanted to say that I hear you and I sympathise with you flowers

toptoe Wed 07-Sep-16 18:09:30

what a horrible situation - why would you feel 'upbeat'? It sounds like it is part of the same deterioration as before and not separate so any recovery is likely to be different to the last time. In fact, his last recovery was really only temporary from what you've said (the drinking is an illness in itself, causing the physical problems in his brain). I would look into a home for him regardless of how much he seems to recover because I would say a relapse would be highly likely. Not having any medical knowledge but that would be my thoughts on it. You need to have a long chat with the consultant and discuss his long term care plan.

ElspethFlashman Wed 07-Sep-16 18:13:12

Sounds more like Korsakoffs tbh. As far as I know, it doesn't show up on a scan, so diagnosis can take a while.

You can certainly recover from acute episodes. But then once they recover you have to see what you're left with and I imagine a period of respite in a nursing home would be best until he finds his level of cognition.

One of the characteristics is not being able to form new memories, so they get stuck in one time period and may be perfectly coherent when recovered (and quite healthy) but unable to live independently any more.

I have known several people with it - they do tend to go into nursing homes with locked doors to stop them going to the pub. In the absence of alcohol they tend to be quite well, and even improve and of course there's great peace of mind for the family.

permanentlyexhaustedpigeon Thu 08-Sep-16 12:32:29

Thanks everyone - especially for reading such a long post!

I went to see Dad today who managed to say hello and then told me to go away.. ach well, at least he could talk and knew roughly who I was. Doesn't seem like he's improving any - there's definitely no visual response and he isn't conscious for long. Last time he improved physically quite quickly after regaining consciousness, but that doesn't appear to be happening this time.

I've asked for an appointment with his consultant to discuss the long-term / medium term plan so waiting to hear about that. The MRI definitely showed damage but I have asked to see what as this isn't on the report.

Thanks so much for all the sympathy - DH is being fantastic and I'm trying not to feel guilty for all the time DD spends glued to the TV while I update Dad's family on progress!

CMOTDibbler Thu 08-Sep-16 12:53:39

It sounds like your dad had Wernickes encepatholpathy and may now have Korsakovs syndrome - the first reverses with thiamine, the second doesn't - theres a very good explanation here about alcoholic related brain injury.

Years ago, I worked on a unit where we cared for two gentlemen who had Korsakoffs- care, thiamine, and no alcohol kept them stable from the point that they had been admitted at, but couldn't reverse it.

I think it definately worth a detailed explanation of what the MRI shows - has he had any scans before that they could compare them to?

permanentlyexhaustedpigeon Tue 13-Sep-16 13:25:39

Thanks everyone. I did ask for the neurology team to explain the MRI - the palliative team had put him on fast-tracked funding to go into a nursing home which seemed suitable until this morning..

This morning he was able to sit in a chair, have a vaguely reasonable conversation with me (though going off on multiple tangents) and was conscious for about 10 minutes or so. He's definitely not all there, but seems hugely improved from 'unlikely to recover consciousness'.

Apparently the neurology team had said his MRI showed damage consistent with Korsakoff's syndrome, had advised thiamine (which he was already taking) and haven't seen him at all; so the ward have agreed to refer him back again and see what they say as it's definitely a neurological issue.

So it looks like a repeat of last time... and might well happen again... and again.... if anyone else says 'roller-coaster' I may sob!

CMOTDibbler Tue 13-Sep-16 13:45:47

At this point, the thing that is going to keep him off that roller coaster is being absolutely off alcohol and having constant thiamine supplementation if it is Wernickes/Korsakoffs. Realistically, it sounds like thats only going to happen with someone making sure he doesn't have access to it at all.

It might be worth starting to look at care homes now to have an idea of ones close to you that you'd consider, and visit some. IME, there will be a sudden push to discharge your dad and you need to be prepared. There are a few threads in Elderly Parents about things to look at.

permanentlyexhaustedpigeon Tue 13-Sep-16 14:17:58

Thanks. I think the palliative team are already organising his discharge to a nursing home but I am already researching ones that cater for his condition - if they're assuming he'll be bed-bound and he isn't, then it makes a massive difference.
Fortunately I did see a few last time before his apparent improvement, so I have at least ruled out some (one had radios blaring at a deafening volume on a constant basis, which was pretty disorienting for me, never mind for him!)

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