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.

OK OP, that is really good news that she is going into hospital. Once there, there will have to be a care plan in place before they can discharge her. You must insist on this, and if they push back because "she says she can cope", tell them it's a safeguarding issue. Those are two magic words.

And, as I said before, do not let them discharge her into your care. Unless you want her to come and live with you, which may be an option.

If she is to remain living where she is, do not say "Well I can stay with her for a while to settle her back in". You have to be very blunt that she lives on her own, and that there must be a care package for her.

She cannot come and live with me and I cannot go and stay with her so that will not even be a consideration.

There are paramedics and an ambulance with her now. They had to climb through her kitchen window as she cannot find either set of door keys to open her door.

She told them I have locked her in and taken her keys away.

They are looking for the keys and failing that will get the fire brigade or police to force her door open.

She also apparently has the antibiotics from Saturday night there.

I am waiting for them to call me back to let me know if they have found the keys.

Yes, she was never going to take the antibiotics.

Start looking into key safes. It's a little box that gets attached to the wall outside next to her front door. You put a spare key in it, and it's secured by a combination lock. So that the carers visiting her can get in without her needing to find the key.

Hopefully once she starts antibiotics under supervision in hospital the confusion will lessen and you can start planning for the longer term.

I do agree that you'll need to be very firm if the hospital tries to discharge her with something like four carer visits a day.

You'll just end up having to deal with the endless minutiae which that entails.

But take it a step at a time for now.

We got all sorts of things for my relative - a wrist alarm, in case she fell. She wouldn't wear it. A necklace alarm - ditto. A phone service which she could press a button for help. She just pressed it all the time, asking what the time was or could they bring her a cup of tea. Or just walked off with them going "Hello? Hello?" and then we would be called.

Be very, very wary of assessments - ideally you would be with her for every one. Because they ask things like "Can you use the kettle?" and your Mum says "Yes, of course I can". But she can't.

My relative had Type II diabetes, so it was very important that she ate. So part of her care plan was for them to prepare food for her. But they wouldn't stay to check she ate it. I often found sandwiches in the bin.

Here's the other thing, OP - when someone is in hospital, they are being looked after. A load lifts from their shoulders. So they seem fine. Relaxed. Not confused (much).

You need to be aware that she will need a lot more care once she gets home. Because then all the stresses of looking after herself come back.

I'm so sorry you're having to cope with this - this all sounds incredibly similar to the situation with my mum. It's so difficult to know what to do for the best. On the one hand, your mum would be safe in hospital for a short period if she goes in, and if the confusion is mostly caused by the UTI, then she could improve very significantly and quickly. On the other hand, when my mum was admitted to hospital it exacerbated everything so much. She was discharged after six days with 24 hour care, against my better judgement, so that a full assessment could be carried out to decide if she needed a care home placement. Having strangers in her home 24 hours a day was the tipping point for her and she developed full blown delirium and ended up being readmitted to hospital where she stayed ans deteriorated for another seven weeks whilst a care home place was found. It was made more complicated because there were still covid restrictions in place at that time, which at least you won't have to worry about now, but it was so hard to cope with seeing the distress she was going through. Being an hour away from your mum makes it so hard - with the best will in the world you can't just pop round to see her every day or when she is particularly distressed, and it's so hard to try to manage her worries and hallucinations over the phone.

Thank you all. I am at her house now.

The paramedics have taken her to the hospital and I will follow up- they have deemed that she does not have capacity at the moment.

They've said she will get antibiotics via IV so I expect she will be in for a few days.

Still no sign of her keys - they must be in the house somewhere as she was locked inside.

I will be very firm about her needs when she comes home - I live too far away to be popping in several times a day, plus I work full time so that means I can't get here in the week much.

@JamieFrasersSassenach i do think you need to prepare yourself for a realistic conversation with the discharge team. It’s horrible and awful to have to tell complete strangers that your mums needs have outgrown the capacity you can provide but if you’re honest with yourself you know that at her age you know that any changes only lead one way.

I can’t impress on you how much stress you’re saving your dm and yourself by taking up any and all offers of assistance you can get now. Prevent yourself and her having to make drastic changes off the back of a full blown crisis.

Agree with @Cornettoninja , and even if they’re not judging you, you feel like they are. Stand firm. I hope things improve for you both soon.

Yeah, the NHS will try and guilt you into taking her home as soon as possible. You must insist on a care plan being in place, that doesn't rely on you being able to visit her at all.

Sad to say, OP, but I suspect her days of being able to live indpedently at home, with whatever help, are over. Yes, I am jumping ahead a bit, but after the next couple of crises that is where her care team and you will end up as well. There's nothing wrong with being taken care of in a nice care home.

Yes, I am jumping ahead a bit, but after the next couple of crises that is where her care team and you will end up as well

I have to agree. It’s a playbook so many people have followed and it’s tortuous. It robs you of being able to just be their child.

add to which, the role she casts you in when she’s unwell is so damaging for you. I know you know she’s unwell but that doesn’t stop the hurt, anger or stress at the unfairness of it all.

It’s a personal theory, but I often wonder if people who’ve lost their grip on reality, however short, lash out at those they love because subconsciously they just don’t want you to see them like that. It goes from a theoretical situation they would never choose to a real one where they’ve lost their capacity to explain that.

I'm at the hospital and she is still very angry with me. So I am in the relatives room and they are keeping me updated.

I am quite prepared to have whatever conversations are necessary before she is discharged and have no intention of trying to care for her myself, logistically it just is not possible.

She has a house that can be sold and some savings so will be able to go into a care home when she needs to.

@Cornettoninja I think it's because I am the only face she knows - her one tenuous grip on reality, but you could be right. The brain is SO complex!

I feel much happier that she is here for now at least. We shall see what some treatment for the UTI brings.

No advice, just words of support. You're amazing! What a tricky time xx

I am glad she is in hospital now. I hope the IV abs do the job and quickly.

Good luck with it all, OP.

She is talking to me again now! They have her on a potassium drip - I haven't been able to speak to anyone to find out what they are doing with her yet.
She is still very confused but at least it's not all my fault (currently!)
This has been a very long week and it's only Wednesday!!
Thank you all so much for your support and tips - it's unbelievably helpful

I completely echo @debbs77, you’re really doing a sterling job of supporting your mum.

I hope the antibiotics kick in and give her some clarity back. Please don’t be tempted to play it down for her sake though, she was frightened and didn’t believe that she was as ill as she was. She won’t like it but she does need to face facts. What if you hadn’t been around? What if you’d taken some of her worst behaviours at face value and left her to it? You both need her to have more people involved, more support than she’s got currently because it’s frightening for you all.

Thank you!

I have found out that her potassium levels are low hence the drip.
She has just been for a CT scan.
Her temperature is fine, so maybe it isn't a UTI after all.
The nurse has reassured me that she will stay in at least overnight.

I won't let them discharge her without a full and comprehensive care plan in place. I literally cannot be her carer. If they don't put a plan in place she'll be on her own 90% of the time.

good luck @JamieFrasersSassenach
I'm afraid you now face trying to find someone at the hospital who can let you know what they think it's wrong and what they are doing in terms of tests and plans to get her more stable .
Do look after yourself .

Are you going home tonight OP? I don't know what people on here think about whether it will be better for you to be at the hospital (and seen as available as a carer) or only contactable by phone. Tell anyone you can that you work full time, have a family etc.

Oh dear, good luck.
i hope your mum is ok. Just keep saying you are not her carer and she lives on her own with no support. Do not offer to fill in until a care package is available, manage her discharge from hospital or say you are willing to provide any care at all. They will try to guilt trip you about freeing up hospital beds, stay strong. You’re doing this for your mum, they cannot authorise an unsafe discharge. Hugs x

@PanettonePudding I am still here - just waiting for a doctor to see her - then I am going home.

I've no intention of letting anyone believe I am her carer!

There is absolutely no way I can even offer to support her while they put a care package in place so that definitely won't happen.

To be honest if a doctor hasn't been by midnight I am going home anyway.