Distressing situation with my mum - need advice

[Willowcat77]

My 82 year old mum became very ill with Covid/low sodium and has now been discharged from hospital after 3 weeks. She is now at home.

Problem is, she has been completely confused with severe delirium since entering hospital and shows no sign of improvement even though she is now back in her own home. She keeps asking where she is and doesn't recognise people and keeps saying in a baffled voice "why am I alive?"

She thinks the hospital nurses were trying to poison her so is refusing to take the medication they have prescribed. I don't think she is safe to be alone but the hospital says she doesn't need a care plan because she is physically okay. Problem is I live over an hours drive away and have a job and a family. I don't know how this is going to work. I can't afford to give up work. I've already taken 3 weeks off work and they want me to come back.

4 weeks ago she was completely independent and now she is like a frightened child. We never got on prior to the crisis - she had a very difficult personality, possibly bipolar or borderline, but now she clings on to me and won't let me go. I am the only person she will accept in the house - she went NC with my brother 30 years ago, so no help there.

I don't know what to do. What do other people do in these sort of situations?

I would contact her GP and possibly even adult social services?? (Not 100% about that last one, wait and see if any other posters corroborate on that one).
Either way it certainly sounds like she shouldn't be alone

I have been through a similar situation although I'm not sure I know enough to give advice. I phoned SW community care and asked for a care assessment (which was done initially over the phone), then a Social Worker came out and spoke to my relative - a care package was eventually put in place. I also went to the GP with my relative (I made the appointment and took her), I ended up talking to the GP quite a lot and they were a good help supporting the care package.

There was a lot of stalling and expecting me to take over from SW initially but eventually I had to be firm with what I was prepared to do (and that wasn't giving up my job to become a carer). As you live an hour away this isn't practical anyway, and that's not even taking into consideration your difficult relationship!
I'm sorry - it sounds difficult!

Start keeping notes of issues/problems and be fully open about the situation to the GP/SWD. I am pretty sure care packages are reassessed regularly so her needs may go down in the future but be clear she needs support now - Don't talk about what she was like 4 weeks ago - focus on her situation today and don't downplay anything because your DM doesn't want external involvement.
Expect it to get more difficult before it gets easier.

I'm sure someone will be along with better advice but this is what my experience has been.

Gotta be cruel to be kind. Essentially tell ss you’re washing your hands of it all and they have to step in.

Thanks for your replies. I feel stunned that the hospital thinks she can manage alone. She's spent the last hour telling me she's a criminal for making me blind. I am not blind!

She is refusing to take the hospital medication because she thinks it's poison. I can't force feed her🙁

I haven't seen my own family for ages, I desperately to go home but I can't. Surely this is just wrong, to discharge somebody like this with no support?

I will try phoning ss and GP tomorrow.

The phrase I've seen suggested on here is that they are planning an 'unsafe discharge', you could go to PALS and complain about this, and also challenge those in the care package team. She is not safe to discharge if she has delirium, is paranoid and will not take medicines. I would challenge this if you can before you leave. She sounds like her capacity to consent would be compromised, do you have POA?

If she is discharged anyway, I would immediately call adult social care and the GP, but I would see if you can challenge the hospital's discharge plan otherwise she's likely to go home without any support and then end up back in again.

ring ss and tell them she is a vulnerable adult.
do not say she was fine 4 weeks ago.
emphasise that she needs an urgent care needs assessment.
also make clear that you live far away and have to return pronto.

I was in a very similar situation a few years ago: I’m so sorry, it is so tough. The SWs will try their best to guilt you into becoming ‘the daughter round the corner’, so you need to be firm about your boundaries, your need to return to work and your family commitments. Also, it may be that the delirium may subside when your mum’s sodium levels are stabilised. My dad’s did very quickly, almost magically, and I hope it’s the case for your mum too. Be kind to yourself.

Does she have a bladder infection which can cause delirium? She definitely needs a proper assessment before discharge.

Also get her checked for a water infection. I recognise this talk.

She's already been discharged and is in her own home. They said the delirium is due to the low sodium, but it's at a normal level now, so I don't know why it's not getting better. She can't sleep and is agitated which means I also won't get any sleep. This is a nightmare.

I am so sorry
she does need to be checked for UTI. Hospital induced delirium is very much a thing as well, so maybe that will wear off.

Definitely call Adult Social Services. Could Age UK help maybe?

I really feel for you.

It is an unsafe discharge. They may have discharged to assess and failed to join the dots. Entirely unacceptable. Was her delirium recognised in hospital? Was there no interim care package arranged?

Best way to get her assistance is a multi-pronged approach.
1- Submit a safeguarding referral to the local authority. The process will be on their website. Point out she is at immediate risk of serious harm. Use those words. Explain why.
2- Contact GP probably by E-consult but by phone if you can. Use the same wording. I believe she is at immediate risk of serious harm. Ask for a her GP or a community nurse to be arranged to assess her immediate healthcare needs and help put a plan in place.
3- Email the CEO at the trust. It will be easy to work out their email address. Explain she was discharged without a plan or any support and this was an unsafe discharge. Tell the CEO you expect better and think they should take action to ensure she is safe and has appropriate support as a matter of some urgency.

Doing those three things generally gets a swift response. If not there are a couple more steps to apply pressure in the right place - Director of adult services and ICS chief nurse. The websites will tell you who they are but hold off on them until the others have had chance to get sorted. 24 hours is sufficient.

Tell them you need to leave within 24 hours because of other commitments.

Sounds like an unsafe discharge to be. I'd go back to the hospital and say this to them. They won't like it at all, but it's true. They are supposed to ensure that care is in place for patients they are discharging.

This is terrible
Contact your mothers GP and tell them what's happening. Get them to help you. Could they send her back to hospital, I think they can do that?

if I could add that my own mother went downhill in a similar fashion to yours, one minute kind of fine (fell out with people, was difficult/prickly and quick to take offence, the next she was disorientated, then she fell, ended up in hospital for a few days then discharged home and she was completely different,rug completely pulled from under her feet, disoriented and incapable of sorting herself out. I had to start going over to help her get up and dressed and pills taken. We knew there was something very wrong with her mental abilities. Then she fell again, back in hospital and they diagnosed her there and then in the assessment unit with vascular dementia. There we're enough head scans already to confirm it. The prior discharge letter had said she needed a referral to the memory clinic which eventually I managed to get out of her next to useless GP surgery. I had to get really shitty and go up the chain to the practice manager to get anyone to implement the recommendations. Clearly the letters never get read let alone acted on but hey we live and learn. I'm just thankful they're not my surgery.

So I suppose what I'm saying is, could she be "transitioning" in some way towards something more serious?

Yeah this. She should be checked for a UTI as a cause for the delirium.

I'm horrified that they have sent her home, she is absolutely not fit to have been discharged.

Absolutely get her checked for UTI - it can go from 0 - 100 very quickly, affects cognitive function and an elderly relative nearly died from sepsis due to UTI. Can cause hallucinations, paranoia etc but is treatable but make sure they do proper checks to ascertain which antibiotics are suitable. We went through months if issues because GP prescribed wrong antibiotics.

I'm sorry for both you and your Mother - must be so frightening for your both.

I totally agree - this is an unsafe / failing discharge. A care package should have been arranged by the hospital. My Dad had a covid admission and had a nurse visit twice a day for 2 weeks, starting on the day of discharge.

I'm sorry - but you are going to have to play hard ball. Following Caron's checklist and deadline, and be prepared to walk away. Some authorities will hang back all the time they know someone responsible is in the house. All the time you are there, they will not pick up the case.

Please do not feel guilty - you have your own family and responsibilities a long distance away, and you've been there for 3 weeks - it's time to go home

www.gov.uk/time-off-for-dependants
Look at this ref time off work

You could also put in a claim on behalf of your DM for attendance allowance

Good luck

What a nightmare, good advice here, good luck OP xx

At a minimum she needs a nursing home, she can't be left safely overnight, she could burn the house down or have a nasty accident. Ring Social Services & her GP in the morning, tell them it is a safeguarding situation, she has been discharged unsafely & that you have to return home within 24 hours & can't care for her. Also get a claim for Attendance Allowance done so that the money can be used towards carers if need be.

Agree with lots of others that urgent contact with the GP is the way forwards - my DM's was over the next day for a home visit when she lost mental capacity.

I’m surprised they thought she was ok to discharge. My FIL went into hospital because of a UTI which caused delirium. They wouldn’t let him back home until he was fully better, so he spent several weeks in a care home and has had carers going to his house four times a day since. I agree that GP and social services should be contacted.

A water infection in old people causes exactly this behaviour. It is often mistaken for dementia.