DM having terrors suddenly

[KeepingTrying]

Hi,

I wondered if I could ask advice about my mum who has dementia?

Since May she has been continuously delirious, but really happy.

She mostly sees lovely children in the garden who are not there, and sometimes they are in the house. She tells me that she meets lots of lovely men around the house, but it's clear that they are all my Dad. Sometimes people hand her tortoises while I am on the phone. When she watches tv sometimes she thinks she has actually been to the place on the tv.

She can hardly walk and can't sit down or go to the toilet with out help and is very very far on with it. But so far she has always been happy, with a strong voice on the phone.

But about four days ago something changed suddenly and she became terrified and was pleading with me to come and help. She said she was in a field and there were 5 doors and then she just started sobbing in utter despair. I phoned once a day for four day and she's been either in full-on terror each time or utterly exhausted from the terror.

Her voice is not the same as normal either and one night she was slurring her words. Tonight she just sounded very weark and so quiet that it was a bit like when she came out of intensive care two years ago from having pneumonia.

My Dad couldn't use the phone because he had his hands full with my Mum, so rang the doctor, and then an ambulance when the doctor didn't answer. The ambulance service sent a nurse the next day who looked her over and found nothing they could help with. UTI test was negative.

My Dad has a double appointment with the GP this coming Wednesday but my mum sounds so exhausted and terrified and frail, and I wonder if we should or could do something sooner.

I wondered if anybody might know what we could do? I did wonder if it was a stroke but I reckon the nurse would have spotted that.

There is no formal dementia diagnosis.

Thanks!

I would ring the GP again and ask for an earlier appointment as your DM is suffering with Delirium.

do You have dementia nurses in your area? Although without a formal diagnosis it may be more difficult to access one. Maybe talk to her gp to get that diagnosis and access dementia-focussed support?

Definitely see the GP for a formal diagnosis. My cousin had a form of dementia ( Lewy body) which gave him visual hallucinations and Parkinson's symptoms too.

As she has got acutely more confused she may have delerium caused by a UTI or chest infection which needs treatment.

As she has got acutely more confused she may have delerium caused by a UTI or chest infection which needs treatment

Agree that a lot more things than UTIs can cause delirium. She definitely needs assessing again urgently.

Maybe speak to one of the Admiral Nursess*

Thank you for the advice. The GP appointment is on Wednesday so we will find out then. DF not keen to go earlier.

Has DF said why? It sounds as though they are really struggling. Have you managed to see your DM or are you able to go to the appointment with them?

Hi,

Yes they are. DF just said "no". I think he is also really struggling and one expression of that is that he won't seek help in a pushy way. He is ultra respectful of doctors and thinks they will automatically solve all problems if he just asks very respectfully.

I called an ambulance last Friday and they assessed her in the house. I don't think I can push any harder than that tbh.

We are currently working very hard on multiple rolling drafts of a written document that DF can take to the GP explaining all DM's issues, so he doesn't have to say it. The process of discussing the document is helping because it is helping DF to understand and accept that the situation is very far on and essentially that a care home is needed. I think that it may be helpful to give him that one more day to get his head around that before he sees the GP.

We are currently working very hard on multiple rolling drafts of a written document that DF can take to the GP explaining all DM's issues, so he doesn't have to say it.

Having had experience of DMIL with Dementia and Delirium I would really, really urge that one of you goes with them.

Poor DFIL won't be able to see the full extent of what's happening, you never really can when you're dealing with it every day. Plus, it's going to be very stressful for him having to get DMIL to the appointment and actually into the Doctor's room on time.

I have written part of the document myself so it should be clear.

I can't go because we have major dramas at home that I am up to my eyeballs in.

So sorry to hear that you're struggling so much

Parkinson’s is usually diagnosed which then leads to Lewy Body dementia. Your cousins will have been treated for Parkinson’s, and then Lewy Body most likely. Both my grandfather and stepfather had their Parkinson’s diagnosis about 5 years before their dementia diagnosis. It’s brutal, isnt it.

My Mum had dementia and we found the dr rubbish at diagnosing UTIs - they basically did a dip test at the surgery and if negative said no UTI. It's only because my Dad is stroppy and pushed that they sent for analysis- and every time it was a UTI. These are massively common with dementia patients as personal hygiene, even with carers, is v difficult. Eventually asked the dr to prescribe long term antibiotics to prevent UTIs which worked.

Doh. Meant to add that the terrors was a classic symptom for us when Mum had a UTI.

It is, sorry to hear you've had to go through it with two family members. He was pretty young ( in his sixties when he passed away) and we were told Lewy Body dementia was his primary diagnosis ( rather than Parkinson's Dementia) - but you're right it's a spectrum and he definitely had signs of Parkinson's too.

I'm not saying that this is what your mum has Op, just that it's worth thinking about. My cousin was definitely less distressed on treatment.

I agree with the other posters that it sounds like delirium. Make sure she is able to see properly as well and the room is well lit e.g. glasses on and lights on. If everything is blurry with dim lighting hallucinations will be worse.

Thank you very much for that @ZoeyBartlett I have passed that information on.

Just a quick thank you for all your advice. My DF did a good job at the GP appt today and the cavalry is now on the way. Social services coming to arrange help, and also the memory clinic to assess DM so that appropriate drug treatment can provided. Hopefully that will help things very soon.

That must be a relief for you, and your DF. I hope you get all the support needed.

Sadly sometimes there has to be a crisis
My dad asked and asked for help as he was caring for my mum alone (early onset) and nobody helped
She fell, and I said do not pick her up, ring an ambulance and when she is in hospital you have to refuse to have her home. They were married for 50 years and he couldn't do it so I did and just kept saying it was an unsafe discharge and he would no longer care for her so she was homeless

Then they found a care home

My late OH had Parkinson's and and became totally terrified. He thought there was a mincing machine in the corner of the room and people were being put into it and thrown down a chute - and he was next in line. He thought soap was being used to dissolve his skin. And he became sexually disinhibited and obsessed. It was utterly dreadful to witness - and I am sure to experience. He was put on an assortment of anti-psychotic drugs, none of which helped.

When he got pneumonia they were planning on taking him to hospital! - no way said I - let the poor man slip away in peace.

One thing the psychiatrist did say to me was that a paranoid belief is held more strongly than an ordinary belief and someone cannot be reasoned out of it, however ludicrous it might seem.

I am glad it looks as though some help is on its way for your poor mother.

Hi,

I wondered if I could ask for further advice?

The GP is organising for social services to call. Also the memory clinic to assess DM and figure out which drug is needed. However DF says he hasn't heard when they are coming and it could be weeks. I asked how my DM is and he said kind of the same, but there's nothing he can do so he is just living with it. God knows what it's like for my DM living with it. I haven't asked on the phone because I find it really hard to cope with hearing her so distressed on the phone, so I'm not totally sure how she is now.

I wondered if anybody might know what to do? I told DF about the admiral nurses.

Do we just have to wait now?

Do we just have to wait now?

Absolute not. We took DMIL to A&E.

Thank you very much, I have told DF.

My mother had dementia and a couple of times over the years there was a sudden deterioration, causing symptoms and behaviour that weren’t there before. This could be what has happened to your DM.

@FictionalCharacter yes that is what I think is going on.