Lewy body hell - is anyone else here?

[Carrie5608]

My Dad has had mixed dementia for about six years. Alzheimers and lewy body.

For the most part until the end of last week he could talk, walk with a rollator, get to the toilet himself. He was confused a lot in his speech but he was ok with family help and DM as his carer. He was starting to need more snd more care but he could still walk and talk. On Thursday he went to bed and talked nonsense until 3am. The next morning he wouldn't wake up. He was in a coma for 24hrs. Now he is a little more responsive and can eat but not walk or talk. Sometimes he has a swallow reflex sometimes he doesn't.

He had a brian scan, it's not a stroke. No chest infection or urine infection.

Does anybody have any experience of whats going on here? Are we at end stage?

The hospital seem clueless about this particular type of dementia.

Thanks for reading.

My mum doesn't have lewy body (they aren't sure between front temporal and alzheimers, temporal variant), but she does have episodes where she is very non responsive for a period of time - up to 48 hours - and then is very confused, slowly coming back to a bit less than normal.
The dementia docs think that it may be some kind of seizure activity, or a kind of brain reboot when something critical dies off.

Shes been having several a year for a few (4 or 5) years now, and each marks a downturn. Shes had blood tests, CT scans etc at each one and nothing (apart from her massive brain atrophy) shows on these

CMOT I am really sorry you are going through this too.

Can I ask you when you say non responsive do you mean in a coma? The hospital told us Dad was in a coma. He has now come out of it but is still much less responsive that he would normally be. The Dr's in resusitation worked really hard to save him but made it clear CPR would not be used.

We just didn't think we were this far down the road. They were treating him for Sepsis but now the sputum sample and chest xray and urine sample have all come back negative.

No one has used the term coma, but shes not conscious - she might respond to pain though which I guess would make it not a coma. Apart from breathing very slowly, shes not ill during them as such.

I hope they find out whats going on with your dad soon