Follow on thread - dementia following delirium?

[Eaexh01]

In a nutshell Mum was hospitalised with delirium in July. It ‘clinically resolved’ approx 6 weeks ago but because she can no longer cope at home, it is a waiting game to find her a care placement.
With lockdown now in place I can’t see her going anywhere anytime soon and strangely there seems no urgency to find somewhere, despite pressure on psychiatric beds.

However my biggest concern currently is Mum’s cognitive state. I accept the delirium has lifted but she is far from the woman she was. She is getting names and events muddled,repeatedly asking the same questions. I received a phonecall from my aunt the other day saying Mum had sent her a very strange letter (posted by the staff) with the wrong surname. It contained requests for very random items (cottage cheese and crisps!?) to be sent - all the more odd as my aunt lives 4 hours away! Also asking my aunt to go round and speak to Mum’s neighbour.
Also the other day I made some very simple phone calls on her behalf whilst sat next to her. When I finished she looked utterly confused and said ‘everything was so complicated’ (it really wasn’t, I was booking her car in to be serviced).

She just isn’t right, yet the unit seems to have washed their hands of her.
Can I insist on a memory test whilst she is still an inpatient? Is there anything else I can request? It would make much more sense to investigate now rather than leaving it to when she’s back in the community.

 

[lollyc]

I'm afraid we had a not dissimilar experience with Mum. She was actually sectioned for 3 months because she had become very agressive (totally out of character) with the delirium. Having been perfectly sensible and competent before the hip fracture that precipitated this, we assumed that the delirium would, eventally resolve. It didn't. We also felt we had just been cast adrift to get on with it. A year later we were seen at a memory clinic - at my request - and an non-specific dementia diagnosed.
Personally I wish we had done more early on. We had assumed that eventually the delirium would resolve, and Mum would be back to normal, and this is the future we made plans for (Dad died 4 days after she was discharged.) No-one ever suggested it might not, but if they had, we would have been better prepared for what lay ahead.

 

[Duggies-girl]

@Eaexh01 before dad was hospitalised with pneumonia he was able to live alone with me going in to do his breakfast and dinner every day. I would take him shopping and for lunches etc He could walk slowly with a stick.

He was in hospital for 3 weeks and had delirium for about a week which was awful. When he came home he was hardly mobile needing help to use a frame. He didn't really know where he was (everything looked different)

He never went out again apart from appointments and we had to use a wheelchair from then on. His mobility improved and he was able to get around quite well indoors with the frame although he was still in danger of falling because he was so frail. His memory improved but he never recognised his kitchen again and would go from his bedroom to the bathroom and sitting room. I had to move in 24/7

He did better than we ever expected but it was very hard. He was still as witty and good humoured as always which helped a lot.

 

[silkiest]

Hi @Eaexh01,
now the delirium has resolved and she is still showing cognitive impairment the unit should at least have done some kind of memory test and done a physical exam including bloods to look for other possible causes. I would ask what tests have been done during her stay and what conclusions they came to. Often wards or hospitals have a 'Dementia Lead' who may be able to guide you through what should be happening - the ward should supply you with their details

 

[Eaexh01]

Thank you; I have emailed her consultant and lead nurse expressing my concerns and asking for further investigations. That was sent Wednesday and I’ve not heard anything back so will chase tomorrow.
I honestly feel like Mum has been left to rot in the unit; she’s been there 5 months and still no resolution on where she is going.
Everyday she rings me in increasing distress; she is desperate to leave and I can’t do anything to help her. Out of desperation I am half inclined to let her move in with me. I just keep thinking how I would feel being ‘locked away’ and I feel so guilty. I just want to get her out of there; she absolutely hates it.

 

[canary]

I hope you manage to contact someone soon, who can explain what the the investigation plan is and what the hold-up with regard to you mum finding a permanent place is.

Do please remember, though, that your mums phone calls are only a very small snapshot of what your mum is like. She probably only phones you when she is upset and you dont know what she is like the rest of the time.
Also, it may be that your mum will want to leave where ever she is (even if she is with you) as many people with dementia do not understand why they are confused and think it is something to do with their surroundings. So when she says she wants to leave, she might just be expressing the desire to leave the confusion of dementia behind - not realising that she will just take it with her.