Am I right to call 111?

[JamieFrasersSassenach]

DM has definitely got cognitive decline.
This week it has got markedly worse.

Today she has been telling me things have happened that I know have not.

Examples are that her heating isn't working - it's 23 in her house.

She says people have been coming in and out of her house all week - British Gas Homecare came twice to put new batteries in her hive thermostat and then to show her how to set her boiler temperature - their records say she was confused.

I live an hours drive away from her, I came over this morning to check everything for her - all good, spent about 2.5 hours with her.

I got home at lunchtime, by 3.30 she had phoned me 3 times to say her heating was not working and she was freezing (her hive account which I have access to was showing the house temperature to be 23) and then that none of her 3 TVs were working.

I came back - everything working fine, DM wearing a vest top because she is so warm.

She then said she phoned me because there were electrical wires all over the floor and she did not know where to put them.

She said I had left the wires there when I was stripping down electrical equipment this morning.

There were no electrical wires and I had not had any electrical equipment out this morning.

I called 111 and spoke to them about her confusion. I am waiting for a call back.

Is there anyone else I could contact for help this evening?

I can't stay here with her and simply cannot keep driving over, or to be honest cope with constant phone calls. I'm thinking maybe she has a uti and this is making her a bit delusional.

Anyone have experience of similar - ideas of what I should do to get DM some help tonight/tomorrow?

I have PoA set up so if she is deemed in the future to lack capacity I can act on her behalf.

Yes very helpful - thank you

• Reassure the person that he or she is safe and you are there to help.
• Focus on his or her feelings rather than words. For example, say, “You seem worried.”
• Don’t argue or try to reason with the person.
• Try not to show your frustration or anger. If you get upset, take deep breaths and count to 10. If it’s safe, leave the room for a few minutes.
• Use humor when you can.

OH dear OP, things do seem to have escalated.

To be blunt, there's really no point in "trying to get through to her". You can't. Also, I would not rely on the antibiotics changing her behaviour. This is, imo, your new normal.

If she does not calm down then she will be sectioned. It sounds (I am not a doctor) like she needs some calming medication, such as sodium valproate. They will be able to assess this once she is on a secure ward. Don't bet on that being in the hospital grounds. It depends on where a bed can be found for her at the point that the ward cannot cope with her.

But, things can go wrong. Let's just remember that doctor who thought she was fit to be discharged...

I don't think there's anything you can do really, except be her daughter, if she'll let you, be calm and offer comfort whenever this is possible. This is the crisis some of us spoke about (I know the whole story has felt like a crisis in many ways). If it were me I think I'd be keeping in touch by phone and getting back to work. Sorry OP.

This is not your new normal op. Your mum clearly has delirium. This may be as well as having dementia, but it’s impossible to know that at the moment.
Unfortunately hospitals are both the best and the worst places for people with delirium. The best- because they can’t be managed safely at home and the hospital with hopefully identify and treat the trigger to the delirium. The worst- because the changes of staff and general chaos in these wards, along with being removed from the persons usual residence and routine will add to the confusion.
General wards don’t have the legal right to keep someone or treat them against their will and so sometimes a section is required to manage this. I would ask if the ward staff have made a referral to the liaison psychiatrist who can assess all this. Mental health wards can’t manage acute illness well but are much better at managing the symptoms of delirium.
Delirium is a condition that does get better ( although it can take up to 6 months and can certainly last long after the underlying cause has been treated) If a person has dementia too it can be that their “ recovery” from delirium is to a much worse level of dementia than they had before . But it’s different for everyone. Some people make a good recovery. No one can tell what the prognosis is at this stage .
It’s such a difficult situation for you and very stressful .

General wards don’t have the legal right to keep someone

OP's mother is already under a DoLS.

Your mum clearly has delirium

Really? And how do you know that @RunnerDown?

I had two relations who were hospitalised with similar symptoms to OH's mother. Everyone around them tried to rationalise it as delirium. Both of them were sectioned. Neither of them had delirium.

Because dementia is ( usually) a slowly progressive illness. And the op describes a sudden deterioration in both her mums level of confusion, along with the development of paranoid delusions and aggressive behaviour. There is evidence of a UTI. Delirium presents acutely - and is secondary to some kind of physical insult.
Of course you can have paranoid delusions and aggression in dementia but it tends to not develop quite so acutely. And I am not saying that the OPs mum doesn’t have dementia - she may well have underlying dementia .
But you cannot make the statement that this is the new normal. Because you don’t know that . No- one knows the level of recovery there will be for the Op’s mum.
I find you posts aggressive @BigFluffyHoodie and I appreciate you are trying to support the op. But you are letting your own experiences colour your judgement.
I also worked in this area for over 30 years

You are used to one side of dementia. I have seen the other.

People always think it "came on quickly" and are shocked, so it must be delirium. Whereas, the person has been declining into dementia and it has only just become unignorable, because there has been a crisis. When people around them such as friends and relatives think back, they start connecting the dots and realise that there was a much longer onset than originally occurred to them.

My posts, while seeming "aggressive" to you, are just trying to help the OP not waste weeks of mental, physical and emotional energy trying to deal with a condition that is further progressed than they realised. And so far, my posts have been accurate.

None of us can know the future for the OP's mother.
We're not there and we're not treating her.
Of course it's tempting to compare to our own experiences but people are individuals and there is often big variations in how they respond to situations and illness . And dementia.

I can certainly know the present. And the present is that an NHS ward will do all they can to discharge a patient - two days ago a doctor said OP's mother was medically fit to be discharged. This morning there is a security man sitting on her bed. I did warn the OP about unsafe discharge. Luckily there hasn't been one here, but only because the ward sister is more clued up than the actual doctor.

The way that the OP's mother is currently responding is exactly as I predicted. Ironically I held off mentioning the possibility/inevitability of her being sectioned, as I didn't think OP was ready to hear that. One day later, that is now an expected development.

What I am doing is saving the OP time and emotional energy.

And @RunnerDown - you even said it yourself.

Because dementia is ( usually) a slowly progressive illness

If it was always slow, you wouldn't have need to put "(usually)", would you?

I'm sorry that there's been this sudden and worrying change in your mother's condition, OP.

This may not be due to the infection. It could be a deterioration in her dementia.

Until she's moved to a more suitable environment there may not be an improvement. Has she had any medication to calm her down?

@BigFluffyHoodie why are you being so argumentative?

@JamieFrasersSassenach i’m so sorry that your dm hasn’t improved. Relief from the constant state of alert must have felt tantalising close. Please try not to carry the weight of being responsible for her entire happiness. The situation is awful but you don’t have a magic wand and you can only make decisions and support her within the constraints of what’s available.

I think I would be getting into the habit of phoning the ward before making any journeys there, ideally speaking to her over the phone if the nurses judge it to be of any benefit. They’ll blatantly see that you clearly care for her and that you aren’t abandoning her.

Is it likely your work will be supportive of you if you explain the situation and the unknowable nature of when you’ll likely be needed?

However, this may be useful in securing further support for her. Obviously the immediate priority is to get any infection dealt with but it does also flag up her needs to be prioritised by a discharge team.

I'm not. (She said, argumentatively.)

You've just literally posted what I've been saying.

This may not be due to the infection. It could be a deterioration in her dementia.

Until she's moved to a more suitable environment there may not be an improvement. Has she had any medication to calm her down?

Thank you all - all of your comments and experiences are really helpful.

I realise that this could be a very fast and sudden decline into dementia, however, I am still hopeful that given the fact that DM has a diagnosed UTI, that this is delirium caused by the UTI.

I could be wrong but that's what I am hoping for. There is certainly nothing organically wrong with her brain - the CT scan showed no lesions, hydrocephalus, or bleeds.

I am not medically trained but did work in mental health for a good few years and have relevant qualifications.

I want to advocate for DM in the best possible way, but it is hard when it's your own parent.

I think I will phone the ward before visiting from now on - I haven't liked to do that up until now because I know how busy they are, but it seems like a good way going forward.

My employers will be very supportive thankfully - I have made them aware of the situation already.

I just need to decide now what to do about DM's Dcat - I have been driving to her house every day to feed the cat and spend a bit of time with him, but I cannot feasibly continue to do that indefinitely. My thinking at the moment is to see if there is a cattery locally that would take him for a few weeks. I can't bring him home with me as I have a cat and dog and I think that would freak him out - although that may be preferable to a cattery. So if anyone on here has any thoughts on that I'd appreciate them please.

Putting her cat into a cattery for now sounds like a good idea. But don't tell your DM you have! Say you're visiting it daily, or whatever.

A local cat sitter may allow be able to help if a cattery can’t.

Would a neighbour pop in and feed him OP? I think I’d probably try bringing him to your house first if not.

I’m sorry you're going through this, the uncertainty is just awful. I hope it does turn out to be a UTI, but she does sound a bit like my friends DM who had Lewys bodies dementia, she went from fine to needing two carers at a time as she became so violent, virtually overnight.

Either way, she’s in the best place, there’s not much you can do, so use this time to decompress a bit and let the hospital do the worrying.

I had considered that @BodensFinger - it just feels 'wrong' to have someone unknown to DM in her house?

I understand, it just might be better for the cat. It’s difficult, I appreciate.
If you need a key safe on the door, local councils often fit them for free.

Actually both my in-laws had dementia. My mil lived with us for several months and my fil was in a psychiatric ward because of his level of paranoia. So I am totally aware of how stressful and devastating it can be.
But I have also been involved with probably hundreds of patients with dementia and the presentation can be very variable. And delirium is very common. And this sounds like delirium.
An argument between us is totally pointless to the op so I’m going to bow out here. I understand you are being supportive but you ar3 also being too definite. The outcome here is not clear yet

I also wouldn't be happy with someone going into my relation's house. They can nose around as much as they like, take what they want. I would go for a cattery, for now.

Thank you @user146990847101 - I have considered Lewy bodies but am hoping it's not that 🤞🤞

I could ask her ndn to feed the cat but I feel bad that he is effectively alone for 23 hours a day and I just won't be able to spare an hour a day during the week to be in the house with him. It seems so unfair on him to go from having DM with him every evening and night and most days to being on his own.

Maybe I should bring him here and slowly introduce him to my Dcat - if I knew how long DM will be away from home that would help me make that decision!

A cat-visitor would be preferable to a cattery from the cat’s point of view. Keeps a bit of stability in his life. When we used one we put a supply of food and dishes in the porch, so we gave her a key for that but she didn’t have to get to grips with the burglar alarm. But that was only for a weekend