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.

Do YOU have support @JamieFrasersSassenach ? I know you said no siblings, but good friends, a husband/partner? You will need to vent and rant ans cry and drink lots of wine. Your mum is safe and being looked after, she is having her needs met in hospital. The staff will be used to being shouted at by rude and confused old people who are away with the fairies. If she does have to stay longer, try to get a friendly nurse on side, they have seen it ALL before and can usually point you in the direction of the most helpful social worker or OT.

Good luck. I hope your mum is better in the morning, more cooperative and happy for you to start planning next steps

@MacaroonMacaron I do have support thank you - DH and friends.

I am home now - I'm sure she will be looked after in hospital.

Tomorrow I will attempt to find out what she is being treated for and how long they expect to keep her in for. I'm thinking that the fact they scanned her brain means they'll be able to say for sure what type of dementia she has.

I also need to go to her house and feed her cat.

Fingers crossed she'll be more with it tomorrow too!

I’m a doctor - medical. So not a GP but work in hospital and elderly people being admitted with new confusion is very common. It has all sorts of causes and we often roll our eyes when the doctor who admitted them just assumes it’s a UTI.

Also shouldn’t be doing urine dips in over 65s! They over have bugs in their urine but it doesn’t mean they’ve got an active infection. We tend to send urine samples to the lab for culture instead, unfortunately this can take a few days to come back, I hope your mum is doing ok.

Also if she’s on a medical ward ring earlyish. Then the staff can ask the doctors for an update. When relatives ring at 3/4pm we’re often battling through jobs in the afternoon and it’s better to find out earlier so we can try and plan to slot in calling relatives at a time that suits both parties. If someone is super sick or dying we call any time so sometimes no updates is good news!

On one of my relatives many, many hospital admissions they found they were low in potassium which was causing the confusion to ramp up, then a few days later once they’d been sent back to care home a blood test revealed they had very high potassium levels, which apparently is even more dangerous…so back to hospital again!
I’m afraid this is how it goes, on the elderly person helter skelter - i’m very glad to read you’re clear about what help you can provide OP.
My advice would be to start researching care homes, so you at least have an idea of your options if she doesn’t bounce back or indeed for the inevitable next time.

You're doing so well OP. I hope there is some improvement for her today.

However, please don't imagine that a hospital ward isn't capable of making an unsafe discharge. They do. My relative was sent home without any of us knowing until she was in the hospital transport. She didn't have her front door key with her - we had it, to stop her being discharged 🙄- but she told them she could get in, so they sent her home. She got a neighbour who had a spare key to let her in.

In my experience, you need to be at any Care Plan meeting. She will probably then have an assessment at home, for which you also need to be present. When my relative was asked (by the home care assessor) if she could use the oven and microwave, she said "Oh yes!" and the assessor ticked that box. I knew she was too confused to use an oven - she couldn't even work the kettle at that point. So I got her to try and heat something up in front of the assessor. She pressed random buttons and put the whole readymeal in the microwave, including the cardboard packaging, for 120 minutes. Had I not been there, she would have been marked as capable of making her own meals.

The home care visitors also never checked if my relative had actually eaten the food they prepared, they just took her word for it and wrote it down. Every time I visited, I found most of what she said she'd eaten in the bin.

All these posts remind me that this is what many of us have to look forward to .
The confusion, fear and paranoia - if not caused by dementia , then induced by infections and failing kidneys impacted by meds for ageing hearts wrecking our potassium levels.
The burden to our children who have jobs and live miles away.
The elderly person helter skelter.

You are so right @amberedover1 - I'm thinking of booking and pre-paying for a slot at Dignitas for myself after this experience!

The doctor wanted to sign her as medically fit and discharge her today, but the nurse would not have it. She has veered from reasonably with it today to complete delirium - witnessed by the ward staff thankfully. They have put her back on the antibiotics while they wait for the results of the cultures from her urine sample.

I visited her earlier but she became so agitated after a while - convinced I want all of her money and house and to put her in a home, shouting at the nurses saying she would jump in the river if she couldn't go home, so I left as I think when she is like that me being there makes it worse sadly.

I will try again tomorrow, at least she is physically safe and taking her medication regularly.

What is happening about a Care Plan, OP?

Be prepared to argue against discharge again tomorrow. There’s a lot of pressure to discharge and free up beds (especially before the weekend) but you need a proper conversation with their discharge team about her safety going forward.

It might be worth ringing early morning before hand over to see how her night was too op. Very often this type of confusion is a lot worse at night for some reason. Getting an idea from the night nursing staff of how she has been is good ammo for if she doesn’t seem too bad in the day when the Drs are flying past on their rounds. Many nhs trusts will have a delirium specialist or team op, ask if they have this, or at the very least specific guidelines, and ask if they are utilising this.

Just wanted to say, after loosing all 4 parents now that it doesn't always follow, that our elders will succumb to dementia/ Alzheimer's etc.
However, my heart goes out to Op, and this extremely difficult time, as I have a close friend, who mum I could see so many similarities with op's mum.
My friend who also lives miles away from her dm got so poorly with the worry she actually had to have some time off work herself.
She accuses her daughter of things - it's really sad.

I'm so sorry OP to read what you're going through.
My nana had dementia and she also suffered terribly with UTIs. Her whole personality would change.
She was exceptionally close with my aunty and unfortunately my aunty for the brunt of everything, and like you was accused of everything.
I hope once you find out exactly what is going on it gets easier. Must be so hard for everyone involved. Sending love ❤️

All of her results are back and it appears she has a UTI but nothing else of note.

She is still delirious so the ward have a DOL - deprivation of liberty, which means she cannot leave the ward.

The ward sister assured me that there will be a care plan in place before she is discharged.

I'm exhausted with it all but glad she is safe and receiving antibiotics regularly. Hoping the delirium and paranoia will start to ease soon.

@JamieFrasersSassenach i have lots of fingers crossed for you and your dm.

give yourself some time off tomorrow, give the ward a ring and see how she is but don’t go tearing over the country to find there’s nothing you can actually do. Could her friend feed the cat or is there anyone local who could pass a key to a hired cat feeder?

just in case it’s useful, most wards have a mobile accessible if she’s in a good enough place to talk to you and she doesn’t have her own. They’ll give you the number if you ask.

Gosh OP, that's a lot to deal with. So yesterday the doctor wanted to discharge her, and today she's under a DoLS 🙄 They really don't give them out lightly. At least it sounds like someone on her ward is on the ball.

My mum had a broken hip about 18 months ago and was very much like this when she was in hospital. We guessed she didn't have dementia as she was 92 and had never shown any symptoms before, but figured out it was due to something that had happened or was given to her when her hip was repaired.

It was really distressing for her - she thought people in the hospital were trying to kill her. She invented all sorts of stories about the other patients and spoke in a way she'd never spoken before. It lasted for several weeks. When she got home it took us a long time to realise she didn't really know where she was. One day, about a year later, I happened to be opening her living room blinds when she was standing next to me and she said, "Oh so that's what's out there!" (It was the driveway, nothing interesting!)

The paranoia did wear off after a few weeks. I really hope it does for your mum, too. It must be so awful to feel like that, but I really feel for you, too.

I thought things may be improving but I arrived at the hospital today to find a security guard sat at the end of DMs bed.

She has apparently been on an 'aggressive rampage' this morning and has just gone to sleep.

She is refusing her antibiotics again so this UTI is not going anywhere.

I've stepped out for a coffee while she is asleep.

What do I ask the nurses on the ward ? Should I be pushing for IV antibiotics?

I've been as laid back with DM as I can so far - should I try being 'cross' with her? Might that get through where being nice hasn't?

I am at a loss as to what to do.

Hugs to you.
Be assured the nursing team will have seen this before. My DM was sectioned for similar behaviour after we couldn’t contain her at home. Don’t feel you need to apologise or take responsibility. It’s quite clear she is unwell. The hospital team won’t think bad of her or you. They will be able to treat her although they might need to find her a MH bed.

all you can do is make sure you have a charger and power bank for your phone, toothbrush and spare knickers in your car and snacks.
when my DM was sectioned she hadto travel 50 miles away with two nurses.
the team who received her were incredibly kind to her and my sister and I. They told my sister and I to go home and not visit for 48-72 hrs to catch up on our own sleep and that they would treat her like their own mum

Thank you @Mum5net - I am wondering whether to ask about a section for her - she is completely out of her mind at the moment and I can't see anything changing until she starts taking the antibiotics.

I wonder as well if some of today has been due to a different set of nurses? The first two days she was on this ward she had the same nurse and ward sister, of course this morning she would have had complete strangers all over again.

I'm going to make my way back to the ward shortly to see if she is awake. If not I shall go home, but I will try to speak to her nurse or the sister to find out what they can do.

I'm guessing it will be wait for the consultant to review her tomorrow.

I've been off of work this week but have to go back tomorrow which will add another layer of difficulty to this.

Good Heavens ,what a shock !
I imagine the hospital must have or can contact staff who have psychiatric knowledge and that they would advise .Though it's Sunday and a GP strike ...
I believe the advice is not to challenge people who are disturbed and that "feeding back" to them can de escalate and calm .
So "yes I can understand why you're feeling that the policeman sitting by your bed is a Russian spy and that he means you harm ,his uniform is quite scary isn't it ?Shall I ask him to come and talk to us both .He's a hospital security guard and he's here to stop you getting lost if you go for a walk .You were really unwell this morning and the nurses don't want you disturbing the other patients "
I'm not very good at this ,but I think you're meant to reassure ,not confront as this escalates things .

Cross posted @Mum5net.

There is actually an elderly mental health unit in the grounds of this hospital so I'm hoping if she is sectioned they will move her there.

I think that would be the best thing for her at the moment.

Thank you @amberedover1 - that is what I thought and have been doing. I'm just clutching at straws really - I don't want to be cross with her, I will scrap that thought!

• talk clearly and use short sentences, in a calm and non-threatening voice
• be empathetic with how the person feels about their beliefs and experiences
• validate the person’s own experience of frustration or distress, as well as the positives of their experience
• listen to the way that the person explains and understands their experiences
• not state any judgements about the content of the person’s beliefs and experiences
• not argue, confront or challenge someone about their beliefs or experiences
• accept if they don't want to talk to you, but be available if they change their mind
• treat the person with respect
• be mindful that the person may be fearful of what they are experiencing

any help ??