DM about to dangerously discharge

[DorsetCamping]

Apologies for the continuing saga but am at wits end.

To be brief DM (74) has been in hospital 3 times over the last month due to various conditions and the last admission being for 10 days and near deaths door. All pointing to her continuing decline and inability to cope independently.

She reluctantly agreed to go to a rehab unit last week and seemed to be making reasonable progress, no doubt due to be constantly monitored and with the 24/7 care.
Tentative Plans were being discussed for her to go home with an enhanced daily care package.

However, yesterday she had a fall, whereby her walking frame tipped and she banged her head. Thankfully she is ok but naturally it raised deeper concerns about her safety and needs when she goes home.

Onto this morning, she said she is self-discharging and that if I don't go and get her tomorrow she will call a taxi . Said that there is no way she is staying, hates it and is exhausted.
I have spoken to The nursing staff who are adamant that it is not safe for her to go home, especially with yesterday's fall and that her care package needs a new review. More worryingly is that no carers will even be available in the immediate future given COVID and calls on resource.
They have told DM all of this but she it's falling on deaf ears.

I am so cross her with, it's like dealing with a toddler. She has no clue about the worry this is causing or the implications with lockdown. All she keeps saying to the staff is that either I, or her elderly neighbours will help if need be.
I mean, WTF?!
They did ask me about her mental health as she seemed so low today but ultimately it is her decision.

I am so exhausted with her. All she is being asked to do it sit and recover - you'd think she was in a prison cell the way she goes on. I can pretty much guarantee that if she goes home tomorrow she will just end up in hospital again and we'll be back in the same merry go round.

Oh gosh, that is not a good start. I hope the care improves from today.

Report it to adult services as well as the care agency office that no one turned up last night and she fell as a result. A missed care call in those circumstances on a high risk case are serious

How did it go?

A PP asked
? I can’t take anymore emergency calls through the night. What would happen, would they send an ambulance?

Yes the lifeline monitoring centre would call an ambulance if you don't answer their call of they can't get an answer or believe she has fallen or is unwell. The alert from lifeline isn't to replace need for an ambulance or emergency response it's so she has someone with her whilst they call one or so you can check first if she needs one if you are close enough. Some people regularly press by accident or for minor things so it'll be the context of what they know about the client if they can't reassure themselves that she's safe by talking to her. No one would expect you to pick her up from floor or lift her if she is unable to stand to get up herself safely or is injured.

I am emergency contact for my NDN and there were times I was fast asleep not hearing the phone , they ought have keysafe number -check the lifeline service do- so that ambulance team can let themselves in. Once the police broke into my NDNs house as we were away and her family didn't answer as second contact number but she had fallen and was on the floor and monitoring team could hear a vague voice saying help me. (I wish I'd been there to sit with her and put a blanket over her & let them in, family organised keysafe after then, following a £130 door repair bill!)

Well it wasn't a good start but hopefully it will just be start up issues and it will settle down quickly. Would she be able to get off the sofa if it was higher? If so chair lifters under the feet are a quick fix. You can also get thick seat cushions that give an extra few inches. Mum needs a chair rather than a sofa because she needs both the arms to push from, a single arm rest is no good.

Thanks sparticus. We’ve had many accidental calls too. I’ll probably carry on as the thought of her needing help and me not being there is too awful.

My DM was like this. Always making what I thought were stupid decisions - but as she was supposedly 'capable', Social Services were quite happy about it!!!
MY DF ended up with dementia and she then was able to get her own back on him for their acrimonious marriage.
My DH and I got looked on as the 'bad guys' and we ended up going NC with my DM - for my sanity.
Nightmare of a situation.
Good luck, OP.

Yes the lifeline monitoring centre would call an ambulance if you don't answer their call of they can't get an answer or believe she has fallen or is unwell. It won't necessarily be quick. When our OT called an ambulance after my father fell, it took 8.5 hours for them to arrive.

Redwoodmazza
They are called unwise decisions under the MCA and has capacity in that decision
They're legally defined in those exact terms and adult social services can't lawfully over ride that. Doesn't make the social worker happy in high risk cases, far from it!

It's huge amounts of work and worry for SW to keep having to sort out / assess for multiple crises, for someone who makes regular unwise decisions with capacity, than to work with a person who accepts that little bit of support they need to prevent the disasters, injuries, distress and use of nhs & other emergency resources. But that's the law and peoples' rights.

Sorry to hear your DM was so difficult.

MeteDinto no sometimes it's not quick. 8 1/2 hours is unusually long but an hour or two isn't that uncommon depending on whether the person is in great pain or distress. I had to wait 5 hours myself in huge pain, as all the crews were busy.

Ambulance service prioritorise its calls and responses and their crews might be tied up on other more time critical emergencies or at A&E waiting for staff to sign off on their patient so they can leave.

That's why call centre call the person's emergency contact. So the relative, friend or neighbour can visit perhaps to judge if they need ambulance or not, sometimes just to wait with them safely for the ambulance reassuring the person, to ring them back if they deteriorate, and can give key details to the crew and pack up their essentials for A&E or admission. You think the paramedics would be able to see the person's medical history but they don't and can't. And what paramedics handover to A&E staff is crucial.

Thought I'd update. Paramedics were called and although it took 4 hours to come out they eventually managed to get DM back up (no easy task as she is so large and has no strength in her legs).
Thankfully after being checked over and monitored for most of the day she was declared Unhurt, however the incident really scared her (as it did us) and made her realise just how vulnerable she is. 4 x 15 min daily care visits just isn't adequate for her needs, it's essential that someone is constantly on hand. She just can't be trusted to follow the rules to keep her safe.

So I have literally spent every available minute since Wednesday dealing SS, GP, OT, carers, District Nurse, pharmacy etc etc to look after DM and try to sort things out where we go from here. DM accepts she needs to go into a care home but at the moment we have no idea how quickly that can be arranged.

Initially SS said that COVID funding was available to send DM to a care home for 6 weeks but has since come back to say she doesn't think DM will
qualify because the rule is the patent must be sent into care from hospital only, not their own home 🤦‍♀️
Seems utterly bureaucratic to me and they seem to have forgotten that DM has spent most of May/June in hospital; in fact if it wasn't for the fact I am plugging the care gaps she would be straight back in there anyway!! So frustrating

Just a side note SS should have said the funding is "up to six week weeks" not six weeks in total. It's called Reablement and is an assessment period to see if placement in a care home is the right place for someone, or if the person wants to, work with them to get them home.

If it's clear after initial assessment for example the first week, that the best place for the person is in care, you only get the first week funded and a financial assessment will work out how much the person contributes to their care.

Just thought I would let you know just in case this happens.

This is what I do for a living and people are forever thinking the local authorities will pay for their loved ones to stay in care for free for six weeks.

Should also add I went nuclear with the Care company who weren't even aware that no one had turned up! Apologetic but said they have to use external agency carers sometimes and they are notoriously unreliable

Thanks @Pippinsqueak I think the care DM is currently having at home is under reenablement although it's clear now she will never be 'reenabled' enough to live independently.

Reablement not reenablement 🤦‍♀️

I wondered what had happened. Whats her financial situation. Will she be self funding. Its good she has now accepted she would be safer in a carehome. The options might be either she move into a carehome asap as a safeguarding concern or she inevitably falls again and gets taken back to hospital.

It's not bureaucratic to only be able to place into a care home for reenablement up to 6 weeks direct from hospital admission. It's their criteria for funding the placement, tied up with funding streams which include health money set aside to clear hospital beds

If she needs a placement (for 24 hours care environment ) from community as she really isn't coping and she agrees with you, you can request a reassessment of her needs and her ability to cope at home from adult services (adult health and care). So a placement from Community is perfectly possible if needed but it just won't be as a (free) re enablement one to facilitate a hospital discharge (unless she was readmitted as acutely unwell or after a serious fall)

Please don't pick DM up from the floor if she is unable to take her own weight, let the paramedics do it safely. They have the training and can see how poor her mobility is then. You could injure yourself and DM accidentally otherwise.

If she has a re enablement (up to six weeks ) care support package they will be "right sizing" her support package at home.

4x daily of 15 mins care visits indicate they don't think she has significant mobility or personal care needs- it sounds like you should ask the senior carer to discuss with you and your DM your observations of her difficulty coping and what extra you've had to do (which you can't continue at this level?)
Re-enablement is free (up to 6 weeks) but ongoing placements and care support aren't , so she'd have a financial assessment at some point to pay towards her social care support.

Do you feel able to talk with DM about what she wants to happen and how she sees things going for her? Then you can support her to tell the teams- as it sounds like her recent fall may have shaken her too as well.
It sounds terribly tough to have this worry about DM during this period.

Thank you, this is all really helpful.
I've spoken at length with the care agency, SS and DM about what happened and how increasingly vulnerable she now is.

The reablement carers have been with her since her 1st hospital discharge and even at that point the plan was only just about sufficient IMO (and only made so by me constantly over there to make it run smoothly).
Her mobility now is such that she is considered at acute risk of falls and even the manager of the rehab unit has since told SS she needs full time nursing care.

As an aside, was just reading an old thread I posted about a year ago where I was consdiderjng building an annex for DM to come and live in so I look after her with the help of a carer, Didn't happen in the end as DB kicked off and seemed to think we would somehow financially benefit. He wanted her to stay in her own home

Ah the irony that he is now unlikely to end up with a penny if we go down the care home route and her tiny bungalow is sold to fund it!

Is she going to be paying for her carehome. You can look up the chc checklist just to see what her level of nursing needs are and if she qualifies for finances help. If she is high risk you can email the safeguarding lead at ss, her dr surgery and create what is called a safeguarding cause for concern. Say that rehab deemed her high risk, she has fallen since discharge, current care inadequate for her needs, she is high risk of falling causing deteriorating physical safety which will result in repeated emergency admissions to hospital.

www.ageuk.org.uk/information-advice/care/arranging-care/care-homes/

Nothing to add, just to say I feel for you. Sounds like a really difficult situation. Please do what you can to take care of yourself.

I dread this being my future. My mum (ages 65) is already very immobile (as in can barely walk, falls often, can’t stand up from a chair) and already refuses to do anything that helps herself. At the moment my dad is able to do her care but I know it won’t be long before more is needed.

I know it’s out of order but I already feel dressed by it. We’ve had no gap between kids and grandparents needing care. She’s never been healthy enough to do even the most basic task/activities with my kids and I feel so sad about that.

It's a shame DM didn't want to stay in the reenablement bed she had in the NHS unit she'd been discharged into.

It really sounds like DM needed to go home and try for herself, and wasn't terribly realistic about what she could do. It's really hard to watch when you know how what is likely to happen, but it can take multiple crises for a person to accept their new reality. It's a process your mum has to work through, because any future placement , if she agrees to one, will work better for it really being her decision made after trying at home as much as she feels she needs to.

I'm glad you are talking to her re enablement care team and that they are listening and sharing your concern about DM. They can increase her length of care calls and liaise with the social workers on what else is needed.and can be offered. I'm sure you are feeling frantic with worry, but as I said before it will play out as it does regardless of how much you let yourself worry. She may end up back in hospital or injuring herself. The hardest bit is watching it happen and doing as much as you can to get services working well and together, like you have, but it's also crucial not to ruin your well-being too by feeling you can't stop or feel you are able to fix things outside your control. This MN section is brilliant at helping people see & challenge the FOG processes.

Did you consider reporting the missed care call (that caused her fall?) to Adult services? That was/is a potential safeguarding concern - eek to the talk about the secondary contracted care agency 'having done this before', doesn't make it ok, it makes it worse! It sounds like they put the package in, in a rush as she was imminently self discharging from re enablement unit so there's some mitigating factors but they have a responsibility to inform client and yourselves (family) if there was an essential care call they could not cover at such short notice.

There's not many support tasks carers can do within 15 mins care calls, so I hope that's the first thing they review with her, if she's more amenable to accepting more help now.

I hope anything we all say, even if just the fact we're listening here with you, thinking of Ideas and explaining how some things might work, is helping you keep going and not feel alone! MN hug 🤗

@HappyHammy

Is she going to be paying for her carehome. You can look up the chc checklist just to see what her level of nursing needs are and if she qualifies for finances help. If she is high risk you can email the safeguarding lead at ss, her dr surgery and create what is called a safeguarding cause for concern. Say that rehab deemed her high risk, she has fallen since discharge, current care inadequate for her needs, she is high risk of falling causing deteriorating physical safety which will result in repeated emergency admissions to hospital.

That part isn't a safeguarding concern Please don't email as safeguarding lead with that.

It is however an ongoing assessment of needs issue - based upon what support a client who was assessed with capacity will accept- which it sounds like ASD (SS .: AH&C) are reviewing via reenablement team

I would imagine her nurse intends to (or has) raise(d) her case at their ICT meetings (or whatever their integrated primary health teams are called in their area). OP can always ask nurse if her case is being discussed and how aware GPs are.

Ah the irony that he is now unlikely to end up with a penny if we go down the care home route and her tiny bungalow is sold to fund it!

It is an irony, if that was DB's worry !

But it's lucky for you, that you didn't. Can you imagine how frantic you'd be if she were living with you in an annexe and how much higher the expectation would be from DM & DB on you to look after her 24/7, despite such a health deterioration and increase in her needs.

www.ageuk.org.uk/globalassets/age-uk/documents/factsheets/fs78_safeguarding_older_people_from_abuse_fcs.pdf

we were in exactly this same position, refusing to go into a carehome, high risk of falling, fell twice in one day at home and same ambulance crew sent out each time, refusing admission to hospital, demanding to go home, refusing to let carers in and when they did eventually agree it was 4 x 30mins a day and an apparent night visit which rarely happened. Also diabetic so meds missed, carers often didn't turn up, everyone made aware and decided it was their decision as had questionable capacity which was eventually deemed to be lacking. The final straw was on discharge from rehab, fell as soon as the front door was shut, emergency services still in the drive, went back to hospital and sent to a carehome that same day, the week before a safeguarding cause for concern raised for self neglect, potential harm at home, frequent falls, risk of long lie on the floor, pressure sores and diabetic coma.