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.

Things seemed a little better today. DM is still blaming me for being in hospital, and still saying that the security guard beat her up. She is still confused but didn't seem quite so bad as she has for the last week.

Her nurse today said once she has been medically reviewed tomorrow, if she is medically fit then they will start to look at a care package/placement for her.

My plan is to call the ward late morning tomorrow and if need be the discharge team.

She still has 2 security guards outside her room and following her so I don't think she will be going anywhere soon.

But who knows!!

Hope you’re ok and looking after yourself though I know it’s hard. It’s a terrible situation to be in.

Will she be medically fit if she's still that confused?

Or is it more than the uti now?

It's the Older Person's Mental Health team you need OP, or the Memory Clinic.

Calling people on the phone never works. You need to actually go there, to meet with them.

So, Monday was a good day - she seemed almost back to normal. But yesterday she was really confused
and delirious again.

The doctors say that the UTI has gone now. They are checking her liver function daily due to her bilirubin levels being elevated.

They are going to call the mental health team back in to assess her again.

It's exhausting!

Sending such big hugs.

Have they at least stopped talking about discharging her?

If OP's mum doesn't have any medical issues, then a medical hospital is not the right place for her. That is why there needs to be a proper mental assessment and a Care Plan put in place before discharge.

OP, I cannot stress this enough - you need to be there for a Care Plan meeting. And/or the mental health assessment.

Has she got HE - Hepatic Encephalopathy?

It's basically when the toxins build up and cause a range of symptoms including confusion.

It’s good that they’re observing a range of behaviours and degrees of delusion from her. Not nice for you or her to live through but it’s so hard to communicate to others what you know you’re observing, especially if your dm isn’t concerned (or isn’t aware).

I agree with @BigFluffyHoodie, you really need to be part of any formal conversations. You have to be there to put the brakes on any tenuous family support that they will lean on and to ensure that they’re not minimising what they’re seeing. You need to make sure that all of your concerns are formally recorded.

Thank you for your advice. I had a call from the ward sister today to say that DM is now medically fit but with delirium. They expect it to take up to 12 weeks for the delirium to completely go.

We discussed the possibility of DM going home with carers coming in but agreed that we don't believe that she will let them in or be particularly safe.

So the sister is putting a case together to the discharge team to find a temporary place in a care home until DM is capable of being at home and of sound enough mind to allow carers in.

It has been documented that I cannot be a carer to her and that I do not want her to go home until she can manage by herself.

She is still under the DOLs with 2 security guards so I think the case for not going home is strong.

God what a nightmare, so sorry for you.

But a big well done for standing firm. I know the pressure that is piled on from every angle to step in and you are doing the right thing. Hope your mum is settled somewhere soon.

OP, a little heads up on care homes if you don't have any experience...
Not all care homes take respite cases, so already your number of possible outlets is diminished.
You might not get too much choice if any at all, but if you do, try to go for one close enough so her friends can visit.
If after several months it is decided it is the best environment for her, remember you can move her to a preferred place but that's for further down the line.

I think that's a fairly positive update from the ward sister.

You're definitely right that with a DOL in place, it will all be taken more seriously.

Best of luck OP. At least the Ward Sister is more competent than the Doctor, who said your mother was medically fit for discharge! You've been lucky there.

But now the discharge team will get involved, and let's hope that they can find her a place in a home temporarily.

@JamieFrasersSassenach may I send you a DM?

@TheShellBeach yes of course

Hello OP, just wondering how your mum is doing now? I do hope that her behaviour has settled down.

She is much less confused now and much calmer.

I have agreed with the discharge team that she will go home at the end of the week with a care package of twice daily carer visits.

This will ensure she is taking her medication and managing ok. I think it will be better for her to be in her own home and as the delirium fades she (should) be able to get back to being more independent again.

She also now has a long list of additional medications including vitamins/potassium/magnesium which should help her long term.

However, she is nearly 80 and both her memory and health will continue to decline. I'm just hoping that now she will have more input from social care that any future illnesses can be caught earlier.

Thank you all on this thread for all of your input, suggestions, experience and support - it has truly been a lifeline for me!!

I'm hoping to be able to update next week to say she is home and things are continuing to improve 🤞🤞

Really good news. So pleased.

Let's just hope she accepts the care and lets the workers into her home.

It might be worth asking her pharmacy to dispense her drugs in blister packs so that the tablets are put together clearly labelled for each day and time

I feel your pain. It is exhausting. I live an hour away from day. I stayed for a bit and it made me ill. Sent home last week after bleed on brain after falling. Dischatged home 5 days later as medically well. Mum refusing care packages, shes of sound mind but this is upsetting me. He was readmitted tonight stroke? I can't cope. Uti nearly sent him (and us) over the edge

That’s great news. Well done

Do double check how long the care package will be in place before your mum leaves hospital. We made sure my mum had a care package in place before being discharged from hospital, only to find out after she was home that it only lasted 3/4 days and then she was in her own.💐

It’s called a dosette box. Pronounced to rhyme with posset.

Yes, or a travel pack. Her local pharmacy will probably agree to dispense them like that.

As for the carers getting in, this is where you need to install a key box by her front door (or wherever). It will have a passcode that only they will know, so that they can get in if she's asleep, or refusing them entry, etc.