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.

I'm not sure what the exact term is. But you need to be there, the hospital's social worker, her key carers from the ward, and probably occupational health.

DO NOT LET THEM DISCHARGE HER TO YOUR CARE.

I agree with @BigFluffyHoodie . It's SO easy to fall into the caring role and it's almost expected. Social care is so stretched that they will try anything into guilt trip you into it. You need to be very very firm and stand your ground. Do you have siblings?

I recognise a lot of what you are talking about from my dad's dementia. Any illness made it 10 times worse but the low level "well" symptoms were bad enough. It's interesting that you post she's worse in the evening - look up sundowning and see if it rings any bells. Dad would regularly say he was going out (he wasn't) and would get very paranoid about people in the house and accuse mum of trying to poison him when she was asking him to take medication.

I am not trying to scare you but dementia is a one-way journey, it's just the speed of that journey which varies. There are lots of us on this forum who have been through it, or are going through it.

have left 3 individual doses with written instructions to take Wednesday morning and afternoon and Thursday morning

She won't take them, OP.

Does she drive? If so, you need to stop her.

And if she say's she's taken them, and they're not in the packet? Look in the bin.

Totally agreed. Sadly it does sound like dementia.

I'm taking on board everything being said about dementia on here.

I have no doubt that she is on the dementia pathway but she seemed to quite literally fall off of a cliff face on Saturday, which is why I think the UTI is exacerbating the dementia symptoms.

It is just me - no siblings and DF died 13 years ago.

It is possible that she won't take the antibiotics but I am being cautiously optimistic after today. If she doesn't then she will get worse and I will cross that bridge then.

I can only do what I can, but I do feel that things are slightly better today.

I really appreciate all of the help I am getting on this thread - thank you.

You will soon stop being cautiously optimistic.

Your main plan now should be for her to be admitted to hospita,. From which she will need a care plan. At which point you DO NOT say you can care for her in any way.

Your thread has taken a little bit of a turn, OP.
Hospital is possible but not inevitable.
She may take the drugs.
Your DM could then bounce right back to almost how she was last week.
She might not.
None of us know.
Dementia is different for every person.

Hospital should be the target.
She won't take the drugs.
If she bounces back to how she was last week, she will still have dementia.
I know.
Am happy to support OP as she has to face reality.

Fluffy, I think OP is facing reality.
Several times she has suggested things will be what they will be and she can only be there when she can.

@BigFluffyHoodie I'm not sure how she could be admitted to hospital currently - she is mobile and quite coherent albeit confused.

Physically she is not unwell and admitted to the GP herself that she has been hallucinating.

I am going to remain hopeful about the antibiotics - I will review this on Thursday when I next see her.

@JamieFrasersSassenach I hope it all goes well and it seems like progress. You can only see what happens.

Thank you @Mum5net this is exactly how I feel

I really am sorry for your worries with your mum. It sounds as though she is very similar to how my Mum was for about 18 months until she ended up in hospital. She was admitted after a very severe nosebleed (she was taking warfarin and was prone to bleeds) and then deteriorated very rapidly. I found the amount of support available before that point was really bad, and social services wouldn't do anything to help, partly because she always appeared to be so lucid when the social worker spoke to her, despite the fact that most of what she said was completely bonkers, but also because she owned her house and had modest savings and so was self funding when she eventually went into the care home.

I agree with a previous poster that if your mum doesn't perk up considerably after she's finished the antibiotics, you need to try to stop her driving, but it was so hard for my mum when she had to stop. I reallly do sympathise, and fear you've got a difficult time ahead.

OP's mum has already admitted she is having hallucinations. OP, does your mother still drive? If so, you must stop her somehow.

I had to get my relation to give up their driving licence. That didn't stop them driving though. We had to sell their car.

The GP said that the hallucinations could be caused by the uti or by dementia.
This is all very similar to her reaction to morphine about 3 years ago.
She is not driving.
I will be back with her first thing tomorrow and she has a friend keeping in touch with her today as well.

@BigFluffyHoodie you're being a bit demanding. The OP is well aware of the issues here and is doing her best in difficult circumstances.

Thank you @TheShellBeach

Have you got her car keys, OP?

Could you stop being so confrontational.

I told myself, when dealing with two different relatives with dementia, that I never wanted to have to stand in a Coroner's Court explaining that I could have stopped my relative driving, if only I'd tried harder. So I moved heaven and earth to do that. It caused rows, upsets, and it took time and effort. But my conscience was clear because I did stop them driving.

TBH, having read all the OP's replies, she is minimising what is happening. It could be tomorrow that her mother smashes into a family walking home from school... or it could be next week. OP's mother even mentioned driving, on the phone to her.

If you think that asking somebody to face up to reality is "confrontational", then fine. But sometimes we need to shock people into action. If OP has not already taken her mother's car keys away from her, she has not acted.

@BigFluffyHoodie she isn't your relative though. So knock it on the head. Everything about the OP tells me they are trying.

I once posted on the Elderly parents board asking for advice when I thought my mother shouldn't be driving any more. Dear god, some of the replies I got! Wouldn't be surprised if BFH was one of them. Then there was the time I asked about how I might be able to limit the thermostat settings on DM's heating so she didn't bankrupt herself. You'd have thought I was asking how to ship her to a gulag. Just do what you can OP. And if you're not already in the cafe, come and join us there for constructive support.

I have spoken to a dementia nurse at Dementia UK this afternoon.

DM currently believes she is locked in her house and has no water and no food.

I contacted 111, a paramedic has spoken to DM and is sending an ambulance. She told the paramedic that I have locked her in the house.

I just hope that they can gain entry to her home.

I understand completely the concern about her driving and she will not be driving whilst she is this unwell and if she does not recover then she will never drive again.

Keeping everything crossed that she can be treated for the UTI by IV and we can return to DM who sometimes forgets what day of the week it is.

Oh gosh I'm sorry to hear this, but maybe it had to happen so that your DM can get the assessment and treatment she needs.