What do I do if she won’t go to bed?

[Facecream24]

So to try and cut a long story short but still give enough information for advice! DM had an operation on her brain, its left her with impairment/disability. Social worker has assessed as not having capacity and done a DOLs. She is to be discharged from the rehab centre she’s spent 3 months at next week to home where social worker has deemed she needs care from being awake to going to sleep as she’s a risk to herself in the kitchen/if she goes outside on the road etc.

I have a million questions and concerns but honestly the one thing that is bothering me most is what if she refuses to go to bed? Obviously the care package has a time on it (9pm) as the worker has to go home! But the care package says they need to make sure she’s in bed before they leave - she’s stubborn and grumpy with the situation as it is - what if she just refuses to go to bed? What happens then? I’m an hour away, work full time, primary aged kids etc etc and feel panicked there will be some expectation that I drive down there at 10pm to try and sort it! I know it’s hypothetical and might not happen but I’m already so stressed with trying to sort out finance and a million other things that this single thing is really bothering me the most. Thanks!

edited to add. She doesn’t feel there’s a problem and she should be allowed to spill boiling water on herself if that’s what she wants to do. She’s not happy at the idea of having someone there all the time which is why I’m worried there might be issues.

If she’s under a DoLs I’m surprised she’s not in a care home.
What does the social worker say about what happens at night? Presumably you have made it very clear you aren’t available?

She’s always been very independent and I think this still comes across despite the problems she is now having so at the best interest meeting all the various professionals all agreed this was the right thing for her. It’s completely different to dementia and hard to explain without meeting her. She can still go to the toilet, eat herself, tie her shoelaces! But can’t really see where she’s at risk. I asked why not overnight but they said they felt the risk was significantly decreased and based on judgment/balanced with intrusiveness. They intend to reassess after 7 days to see how it’s working.

I’ve got a meeting with the care provider so will make it clear I can’t be there but I’m just struggling to see how it will all work!

What’s meant to happen if she wakes and gets up at night?

A DOLS is quite significant, I’m surprised they haven’t suggested 24/7 care ie in a home 🤷‍♀️

did you have any input into the decision to send her home? Are they expecting you to be available?

Even if she has a DOLS and doesn't have capacity she still has the right to make decisions for herself, even if they are unwise ones.

Make it clear to social services and the carer that you won't be leaving your children unattended to see to your mum at 10pm at night. Other than that, there isn't much you can do. Hopefully she'll settle into the routine after a week or two.

If she doesn't, and she hurts herself, she'll just end up in hospital again and be back to square one.

We were at the best interest meeting and it honestly felt like the best option at the time. The professionals really sold it to us. She’s self funding so it’s not even about the money! We don’t actually have health POA that I can tell only finance so I don’t think I can disagree anyway!

Apparently if she wakes at night she’s not thought to leave the house or use the kitchen she’s still got many faculties. It’s really hard to explain sorry.

Could you get a live in carer as opposed to an hourly carer who comes in the day. They can be very cost effective compared to hourly carers. If she's self funding you've got a lot more choice so thats a good thing.

Obviously she'd have to agree/have a spare bedroom.

Based on her presentation so far it sounds as if they don’t think she has needs at night. I think you’re going to have to cross your fingers that the carers can persuade her.

Do they/you think she could or would use a pendant alarm? Does she have one?

the original suggestion was a live in carer but she hated that idea. Even more than this one! The idea is that the care can hopefully be eventually stepped down. Although I don’t know how likely this is.

@PermanentTemporary she does have an alarm but forgets she has it as there is an issue with memory too. She is having a door sensor installed and they’ve spoken about maybe getting one for her bed too.

I'm in a very similar situation, and quite surprised that people are surprised that this is what's been agreed. The approach I'm taking? Say a little prayer to whatever gods have kept my relative safe through all the other times she's made terrible decisions and put herself at risk. Then hope that if there is a crisis, the carers can deal with it in the morning. Oh and expecting that the inevitable crisis will cause Social Services to have a rethink....

It sounds harsh, but it's the only way I can deal with a situation which is completely outside my control....

I am a social worker and I just wanted to say even though she is subjected to a DoLS authorisation in the rehab centre does not mean they should not look at supporting her back home with a care package and tech as a least restrictive option. I would perhaps check if an OT assessment within her home is going to be completed to give them more evidence of her ability to live independently. I would also ask if they are going to complete a COPDoL in her own home as she will still meet the Lady Hale's acid test.

Obviously the care package has a time on it (9pm) as the worker has to go home! But the care package says they need to make sure she’s in bed before they leave - she’s stubborn and grumpy with the situation as it is - what if she just refuses to go to bed?

If the carer is good, they won't be able to go home until the objectives have been achieved. Their company will have to pay them for the time they've worked. Their company will be onto social services about a) getting the care hours increased because it's taking ages to get her to go to bed or b) refusing to support her saying she's too difficult for the service they provide and so they can't accommodate her needs. Eventually, social services will cave and re-assess her, putting her into residential care.

If the carer is less good, they'll start putting her to bed at 6pm or something stupid to account for the 3hrs it occasionally takes to get her into bed, then if she's asleep at 7pm they'll be skiving off home early. If social services find out they won't care, except perhaps to say that since she's usually asleep by 7pm they'll make that the new ending time for the carer.

If they're bad, when she's found the next morning having had an accident at home or picked up by the police for wandering the streets at night, they'll lie about her being in bed asleep when they left. Social services will eventually cave and re-assess her putting her into residential care.

If you start getting involved to pick up the slack, you'll end up in an early grave yourself and social services won't GAF or do anything about your mum's care to prevent that.

I can’t imagine them succeeding in getting her to bed at 7pm if I’m honest. She’s pretty healthy physically.

@Louisetopaz21 thank you. I hadn’t heard of those and they’ve not been mentioned so I will ask. I also want her to have the least restrictive option. She was completely independent a few months ago and has such a strong personality still coming through showing that this is what she wants. OT have taken her home a few times and assessed her showering, locking the door, using a knife/the kettle etc and all their concerns are kitchen related (and the road).

I'm sorry to hear about your mum.

I suspect this 'care package' will fall apart pretty quickly. It is unsustainable as she is not safe to be left alone, and yet the plan includes her being left alone for a considerable part of the day.

Do not offer any support for this care package, if it doesn't work without your input, it doesn't work full stop. So if you do get a phone call, say you are unable to help. They will have to reassess the situation which will probably mean moving her to residential care.

I do have an additional question as well I don’t know if anyone can help with. They’ve told me as she doesn’t have capacity I need to use the finance POA and organise paying the bill for her etc which I’m trying to sort out. Feels all wrong in all honesty! So when I do the form online (I need to get her details first) basically all cards she has/online banking is all cancelled and I get issues with new things? Is that right? But I can request a card for her to have too? She will need to be able to pay for shopping, hair cuts etc as she’ll be going to these with the carer.

A capacity assessment is decision specific. So a person can lack capacity regarding care and support needs and risk, but have capacity regarding finances.
If there is no POA for finances already in loaded and your Mum lacks capacity re finances, a POA cannot be granted. It would need to be a court appointed financial deputy ship.
This process is lengthy and expensive.

It’s not clear from your post if the bank
account had already need frozen. If it hasn’t, then can you support her with her finances?

Do you have a Finance PoA already in place and signed off?

Assuming yes, the way it (should) works is you send off a copy and evidence of the loss of capacity (the Social Worker should have done a formal report confirming this) to the bank. They will then cancel all cards, etc and re-issue them to you, as well as providing you with online banking access. You can then make arrangements as you see necessary - you shouldn't really give your mum a card with free access to the account if she's not capable of making decisions about the money, it puts her at risk. If she needs a card, you can look at a prepayment card, which you'd load up with a certain amount. This gives her access to funds while reducing the risk.

As said above, if you already have the POA you do now need to enact it. I took mine into my local branch of my mother's bank. I made an appointment to see a member of staff who knew about POAs so it was straightforward and she was very helpful, helped me set up online banking.

They will issue you with a new cheque book/card which will say something like 'POA for (mother)'. They asked if I still wanted her to have her own card too and I said yes.

NEVER let the POA out of your hands. You need to get certified copies made if you need to send it anywhere.

I know what you mean about it feeling 'wrong', I did not want to delve into my mother's finances, but that is what the POA is for. I did it for a long time so got used to it.

It’s difficult. There’s no doubt that people with brain injury/cognitive impairment often do much better in their own homes - they’re not wrong about that. And sitting in hospital because something might go wrong gets shot down fast. I hope she gets into a routine ok.

YY to a prepaid card for her. Huge risks of her being exploited with a debit card of her own.

In England you create a code on line. You first create an account for yourself and then you add the poa to this account.
If you type in "using a poa " into Google it will bring up the relevant gov.uk page and this talks you through it.

If the poa is registered then there will be a number and a code(different from above)on the letter that was sent to you. The code may have expired but you can generate a new one through the account you create and they'll send you a new code very quickly.
I used my poa for my father with Barclays and they didn't need the certified copy as everything on it is on the electronic copy which they access with the code you generate for them through the post account. .

@Musicaltheatremum Thanks for the reminder, this was not an option when I had to do this for my mother. But do all institutions accept this method now? My OH registered POA for MIL three years ago and it was patchy, MIL had money various banks and some accepted a code, but some still insisted on seeing a paper copy.

Is it an Enduring Power of Attorney you have @Facecream24, thus the lack of Health & Welfare LPoA?

Just to flag to other readers, if you/your parents have an EPA, there is no health provision in it, so you need to do a H&W LPA too now (subject to capacity). The EPA cannot be administered digitally, so you cannot create the code to provide digital access. You will need to have certified copies. Always ask for these back and lodge the original with your solicitor.

No I think it’s a lasting power of attorney. It says it’s for finance and property. We did it in 2018. I just can’t find and can’t remember doing one for health too. I was quite young to be fair and just humouring my mum signing it rather than paying attention! I’ve done a search of the public guardian records and still waiting for that to come back but I’m just assuming there is no health one for now as I can’t find any evidence of one so far.

What makes her more unsafe during the day than at night? Why does the carer need to put her to bed? Does she need physical assistance to get into bed?

I am a self employed carer and have clients who I attend to in the evenings. I don’t put any of them to bed as such. I assist them to get ready for bed but they then sometimes stay up and watch the tv or whatever and take themselves off when they are ready. If she is so high risk during the day that she needs constant supervision then she won’t suddenly be ok to be left completely alone overnight.
If she is at risk of absconding then I would install ring doorbells on all exits with motion detectors turned on after the carers leave to notify you that she has left. I would also get her one of the fall alarms with gps location switched on.
If she is at high risk of falling and that’s why she needs to be in bed then I would set her room up with a tv etc so she has entertainment once she is in bed if she is not asleep. But there will still be a risk of her falling if she needs the bathroom during the night.