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.

@user146990847101 thank you - sorry you had to go through this as well.
She is 79.
I guess I will just have to wait until tomorrow afternoon when I can get over to her.
Hey Ho!!

@JamieFrasersSassenach huge sympathy.
Might it be worth ringing social services re safeguarding as GP surgery suggested?

What a nightmare, sounds like she may know the pharmacist, would she take advice from them over the phone?

The trouble is that when elderly people get this delirium as a result of an infection, they don't make rational choices, nor can they such to decisions made.

OP come and join us on this thread:

https://www.mumsnet.com/talk/elderly_parents/4967638-so-bloody-exhausted-waiting-for-someone-to-die-2

I'm so sorry to hear whAt you and your mum are going through. I can't offer much in terms of advice at the moment, but I really do know what you're going through. Your mum's confusion sounds so much like my Mum and the memory of how terrible things were for her will never leave me, or the memory of just how helpless I felt. I was a similar distance away from my mum as you are from yours and used to either get 20 phone calls a day or my mum would lose the phone and not answer. In her case, the hallucinations were largely due to dementia, but were always much worse when she had UTI. One of the first signs of her dementia was that she kept forgetting to take her medication and that she was very suspicious of anything newly prescribed, and in complete denial that anything was wrong with her. Like your mum, she was horrible to me at times, but lovely to everyone else, and it took a long time before people generally realised that she had dementia. I was able to speak to a very kind doctor at her practice, who got things moving in terms of assessment, but I found that there was very little support available for day to day problems like UTIs.

Its good that your mum's friend is able to help out and hopefully she may listen to the pharmacist if she goes there. But the driving is another worry for you and it's so hard to stop someone from driving when the time comes thst they are no longer really safe. My mum was told to stop driving due to an worsening eye problem, and it broke her heart when her car was sold, and I think it added to her decline very significantly.

I do hope you are able to get some support.

@TheShellBeach thank you - I will head over to that thread now

@Growlybear83 poor you - it's horrible when they are so nasty towards you isn't it?

I phoned her and told her that the doctors will call her to explain what the tablets are for and why it is important for her to take them.

She had a rant at me and then said she has been out shopping and is now going to the chemist in her car.

Honestly I don't know if any of what she is telling me is true. I don't know if she is even capable of leaving her house at the moment.

I'm banking on her friend popping over to see her this afternoon and then I will go tomorrow.

I think as another pp said I am just going to have to let it all unfold until she is obviously without capacity in the presence of someone else who is able to do something. It's very hard.

Honestly I don't know if any of what she is telling me is true.

Specious - Plausible, but wrong. Became one of my favourite and most used words!
My relative used to tell me and others of fabulous days out, trips here there and everywhere, and, if you didn’t know their car was long gone you’d have been convinced they were living the life of Riley whereas the reality was they’d hardly left the house for years.
It’s frustrating difficult to get anyone, family or professionals to see how confused they were when they pass the where are you/whatday/who’s primeminister type questions with flying colours but can’t be relied upon to know if they’ve had breakfast or taken pills etc.
It can be so subtle, and if people don’t want to see it, easy to explain away.

I really do feel for you, and the sense of helplessness is awful. One thing I found as my mum declined, and also with my mother in law who has also had dementia for some time, was that she really rallied in terms of her confusion whenever she saw a doctor, social worker etc. She always sounded very plausible when she spoke to anyone outside her immediate family, and talked lucidly about her past and family, but because the people didn't know her background, they didn't realise that 95% of what she said was total fiction.

It's horrible when your mum turns on you when you're trying to help, but try to remember that it's not really her being like this. I hope that your mums problems are just caused by the UTI rather than the start of dementia. No matter how upset she might get by her perception that you're interfering and trying to send her off to hospital etc, there will still be a part of her that will know you love her and are trying to help her.

I have finally got somewhere with her GP surgery - the paramedic from the surgery called her and she didn't answer.

So the practice manager phoned her and managed to speak to her about the tablets - initially she said she had a strip of tablets, then that she didn't know anything about the tablets and then finally that she had one loose tablet in a box.

She then told the practice manager that she had to go as the bank manager was there and that she would call the practice manager back later.

DM then phoned me and said that a nurse from the surgery was going to call her back and that the gas man had just been.

I spoke to the practice manager who said she would talk to the GP.
The upshot is that I have an appointment to take her to see her GP tomorrow afternoon.

So with any luck we can get another urine dip done and start/re start the antibiotics.

I cannot tell you how helpful you have all been - MN at its finest!

I'm sure I will receive a lot more phone calls from DM today/tonight but at least I have a plan now.

I will update tomorrow.

Thank you again vipers!

I'm so pleased that you've got an appointment for tomorrow. It sounds as though the surgery staff were concerned by your mums confusion. Hopefully the doctor will be able to persuade her to take the antibiotics. She may well improve very quickly once they've started to work.

As your mum is so confused at the moment, is it possible that she's missing her other medication, which could be making things even worse? When my mum began to forget her warfarin and blood pressure medication, the GP was able to arrange for the district nurse to call on her twice a day to make sure she took her pills, which was a real lifesaver. This didn't help with her lunchtime medication but the doctor changed the dosage of everything so she only had to take her medication twice a day, under the supervision of the nurse. Before this happened, I was ringing my mum three times a day to try to get her to take her pills whilst I was on the phone, but I started to realise that she wasnt taking them. I know not all district nursing services provide a medication service but it might be something to think of in future if needed.

All this sounds so familiar @JamieFrasersSassenach (I know I wanged on about my partner but I’ve had similar situations with my dad whilst I lived about 100 miles away).

I’m rooting for you and your mum and hopefully this time on Thursday she’ll be well into a course of AB’s and you’ll have a little room to breath. It’s hard work and puts you permanently on alert

If you can find them before you go to the doctors take the antibiotics with you along with a bottle of water.
Try and get her to take the first tablet in the presence of the doctor!

If that doesn't work then I'd be asking for capsule type tablets so I could put her medication in her food for a day or two. It's not ideal but you're not going to get anywhere if she continues to refuse to take them.

Glad you’ve got an appointment for tomorrow. I hope she cooperates and goes with you easily.
once they realise the extent of the confusion it should help.

I would also be concerned about dementia. These are all the symptoms displayed by my father. His symptoms were made worse/more apparent when he had a UtI.

I managed to add him to on findmyfrind on my phone so I could track whether what he said was true ie going out. He would often leave his flat at 10:30 in the evening and walk in to town. He would try angle get into coffee shops and the wait at the bus stop. I would get in my car and just happen to be passing by and offer to pick him up and drive him home. He often thought visitors were in his flat.

He took all his fear/anger/frustration out on me. Went to the police, estate agents, town council to complain about me. The police would be called and then me to drive him home. But he was as nice as pie to his gp. It took one of his neighbours to make an anonymous call to adult social services to report him for anyone to take me seriously. Plus a visit to the police station with knives for the police to take me seriously. He then attacked me in his flat where I thought he was going to kill me. He launched an office chair at me and pinned me down on the bed with surprising strength. Thought I was going to suffocate and I am not a lightweight. Luckily a phone rang at that moment and distracted him enough for me to get out of the room whereby he swung punches at me. All I had to hand was a plastic hole punch and all I could think was oh god I'm going to have to hit my own father with a hole punch. I managed to some how not him any get out. Called the police who had not long left and my father was sectioned the next day.

A UTI had made all his dementia symptoms worse or he couldn't control them any more. It was a very distressful time.

He then went to a care home as his dementia had gone to the next level where he was not safe.

Sorry that story just poured out.

Hopefully your mum has a UTI that can be treated and all will be well. But be prepared that any illness can make underlying dementia symptoms more obvious.

@minmooch that sounds awful - you must have been terrified when he pinned you down.

Sadly I think this UTI is highlighting existing dementia symptoms that were not necessarily causing DM too many problems.

She phoned me last night to say there were lots of people in red jackets in the house & that she could not get out.

This morning she phoned me to ask where I had put her tablets and to say she might not be in later as she had to go out.

I'm dreading trying to get her into my car later to get her to the GP.

It’s so, very frustrating. My own MIL was always at the Drs, given various medications but after reading the leaflets and seeing side effects, threw them away. She was also very confused and bed bound, although no obvious reasons for this. GP came out and said she had a UTI and gave her antibiotics. I asked why she wasn’t taking them and she replied because they had to be taken with food. I got her various bits of food, but there was something wrong with all the food, so again she wouldn’t take tablets. Rang GP again and GP said they would call in to her later that day, but rang again to say they wouldn’t until she finished the antibiotics. We then called for an ambulance, as soon as her saw her, they wanted her admitted and although she was against it, they managed to persuade her. Once there, she was put in side room as she had a bad infection. She seemed to improve once on a drip, but I think the damage was already done, she wouldn’t eat, kept pulling out the drip, they had to sedate her. Whatever it was, it took over her mind, unfortunately. She was 84, but up until a few months previous was very active, she died 3 weeks later.

@JamieFrasersSassenach no help I know ,but I'm thinking of you and sending strength your way for getting your mother to the GP today .
She's very very lucky to have such a kind daughter .

I would write out all the incidences and phone calls of last few days and forward it all to your GP before your visit so they have a v clear idea of how much she is halluncinating

Have you got a Plan B if she refuses to get into the car?

What an afternoon! I got her to the doctors - her GP was brilliant. Her urine is testing positive for leukocytes which is probably a UTI (100%!) He spent 30 minutes with us.

He gave her another weeks worth of antibiotics and wants to see her again (with me) 2 weeks today. He kindly made an evening appointment (after appointments are usually made) for 2 weeks time so that I can get there after work.

I gave her one antibiotic before I came home and have left 3 individual doses with written instructions to take Wednesday morning and afternoon and Thursday morning.

I'm going back on Thursday and will do the same with the antibiotics and then again on the weekend.

Hopefully by the weekend the antibiotics will have made a big difference to the infection and the confusion and we can struggle through until the following weekend.

On the whole, today has been a good day.

That was a name change fail!!!

Sorry to say, OP, that IMO you mother has dementia. It's not the UTI, it's not delirium.

The best thing you can do now is get her admitted to hospital, for whatever reason. Once there, demand a care plan before she is discharged. Do not, under any circumstances, tell them that you are prepared to do any care for her at all at home. She needs a 365 assessment. Ask for one of these.