Rapid decline over three months.

[ginforall]

My mum was absolutely fine three months ago: active, chatty, playing with grandsons, going on walks and theatre trips. She had a UTI and developed some confusion. Since then there has been a rapid decline. She was admitted to hospital three weeks ago, she has acute confusion, often talks about people who are no longer with us who she says she has seen earlier in the day, balance issues, has fallen a few times, blurred vision and seems to have aged 20 years in 2 months. She has all the symptoms of advanced dementia from what I’ve read. She is 68. The doctors have done MRIs, ECGs, EEGs, a lumbar puncture, along with lots of blood tests etc. Other than noticing a swelling in both sides of her brain everything is coming back negative. Does anyone have any experience of such a rapid decline? It’s very difficult on our family.

I'm not an expert but can only tell you how it was with my mum who (as you may guess from the user name) has been diagnosed with Alzheimers for four years. She had symptoms very similar sounding to your mums after becoming unwell with pneumonia and was in hospital delirious and very unwell. The difference here is she subsequently had an MRI and it showed, very obviously, signs of dementia. Despite this though she did also improve an awful lot after discharge and with (live in) carers at home. Your difference here is that your mum has signs of inflammation but not (that they have said) signs of dementia, so I don't want to peddle false hope because I'm no where near an expert, but she doesn't sound to have dementia diagnosed from her scans which could be good?

Wishing you luck anyway, it sounds like an absolutely horrible situation, my mum had been obviously going down hill for some years (mid 70s on) and it was still incredibly distressing, to have this happen so suddenly must be very hard on all of you.

Sounds like Delirium? It can resolve but can take a while.

My MIL got what I described at the time as super-charged dementia. In a couple of weeks her personality just… went. A couple of years after diagnosis, she got a chest infection and was treated with IV antibiotics. Over the next couple of months she came back. Really back. My youngest child was able to have a relationship with her, and nice memories. She did end up dying with dementia - but had several good (i.e., dementia free) years between the initial diagnosis, and the actual dementia.

Last October my Aunt, with a UTI, had to be sectioned. She was so… well, far gone, that we couldn’t see any way back. But after antibiotics (which were difficult to get into her - IVs yanked out, and pills spat out), again, she went home without any sign of dementia.

Obviously, these are simply anecdotes - there will be many other less positive stories. But there can be hope. Good luck.

Thank you, the positive stories are definitely nice to read.

Her MRIs are not showing dementia, I just wasn’t sure where else to post as her symptoms are so similar to it. It’s the not knowing which is difficult and seeing her decline so quickly. I will definitely mention delirium again after the UTI to the doctors, it was what we first thought was going on when she started with the confusion. However they seemed to rule it out early on, but were focused on checking whether she had a TIA, which they have also ruled out.

What are the doctors saying about the swelling in her brain?
What do they think is the cause ?
Are they treating it ?

Yes happened with my Mum. Unfortunately no happier outcome here, but decline was terrifyingly rapid (months not years) and then seems to have plateaued. Been diagnosed with mixed dementia and Alzheimer's but honestly, they are diagnosing the presentation rather than having any definitive diagnostic scans. Everything came back clear and only normal age related changes. Mid 70s at the time. Suspect she will go on for a long time as she is well looked after and fairly fit in her care home.

Sending you 💐

They are not sure of the cause, not treating anything at the minute, just testing and monitoring. Everything keeps coming back negative. They think it’s a form of dementia and have told us to expect it to continue to decline and they are looking into sending her home with a care package. We are looking at moving her to a different hospital (one which has a neurological specialism). At the moment she is just getting worse and not receiving treatment, but I do understand there might not be any treatment.

I’m back at work full time as a teacher now so don’t get to see her (her hospital is an hours drive away) or speak to the doctors as often as I could in the summer. My stepdad is there each day and relaying information.

How awful for you @ginforall .
My limited experience is that Alzheimer's has a very clear presentation on a brain scan.
I would seek more neurological in put it you can .

My aunt is a touch older -72. She’s never been the sharpest, but suddenly stopped talking and very confused, didn't seem to recognise her immediate family or house. After lots of scans/tests they’ve said it’s a condition thats stopping blood getting to the brain efficiently. Can’t recall the name. Doesn’t seem to be any treatment available and it certainly presents as dementia. She’s home with a care package but it’s taking a huge toll on her older husband and family. Can’t really be left alone for more than 2min, forgotten how to use the bathroom etc. and like above she’s physically great so this could go on for a long time…getting old sucks!

How are things going now @ginforall. This must be so worrying for you

Sounds like vascular dementia. My DM had rapid decline followed by a plateau then another rapid decline followed by a plateau. Terrible disease.

She is still in hospital, still no diagnosis. She continues to decline. She still recognises us but struggles to hold even a simple conversation, talks a lot of jibberish. Physically worse too, can’t walk without a person either side supporting, sometimes needs help eating, does not know when she needs the bathroom. They are looking at doing a brain biopsy as the next step in investigation, she is on a list to have one.

Its tough.

It must be so frightening for you and she’s really not that old at all. I hope she gets the biopsy urgently

The most probable diagnosis which she could get with all these symptoms is dementia. Always keep an attendant with her and close family members could help her recall previous memories.

Has anyone looked at the drug regime she might be on? My mum has got dementia and was hospitalised with a fall. During the hospital stay they looked at her drugs regime (nothing wild - just statins etc that many people take) and were horrified that she’d been on a particular drug (apologies as I can’t remember which it was now) for far too long. They took her off that drug immediately and she improved in many ways almost instantly. She still has dementia but she is better than she was.

Ask the hospital geriatrician to check her drugs regime, if she takes anything, just in case…

My elderly mum became like that when she was dehydrated. It was alarmingly like dementia, but once she was rehydrated she was back to normal. She had also been like that with a UTI. Is there a possibility of either of those things being the cause?