To struggle to believe this person is being left routinely passing out and unconscious for hours?

[frequentlybaffuckled]

Put it all in to not drip feed.

They do apparently often have Bradycardia. They also clearly are disabled. They have been around medical care and hospitals a lot, and clearly have both health and general anxiety. They eat poorly and self care and MH are not good.
Visibly drained, pale, thin, unwell, low energy, unable to walk without aids.
I feel bad for questioning them at all.

Their life has fallen apart and it's clear general professionals around them aren't really doing a lot partly because the person makes it hard work.

I've been doing lots to get them out of the mess, into better situations and it's been working. Practicality wise we're almost over a huge life changing line.

I'm now hitting a wall both with my own pissed off suspicions that they may feel weak, wobbly and sleep a great deal but are capable of being woken by an alarm, rather than be, literally, as they claim, suddenly collapsing without warning, (always in a bed or chair, never in a public place or in front of friends) at any time, and being literally unconscious for hours.

And, with the fact that is now being used as a reason to not to turn up to important appointments or agreed times to do things for them that they have asked for, which messes up my life.

They are outraged at me proposing they still have to take responsibility and practical answers: IE Wont lend me a shed key so a delivery can happen regardless. But insistent they may be unconscious and expect the delivery driver to return as many times as it takes, and me to come to help, for them to get their goods. (made up example close to realities)
Or I arrive with someone and materials to do a hard five hour job (free) and they aren't there because 'They where unconscious' for the first three hours, so I'll 'have to do a little and come back another day.'
They are claiming this is their disability and I need to recognize I'm discriminating against them if I don't accept it and work around this not yet diagnosed awful condition. They rarely even say sorry. 'As it isn't their fault.'

They have said their conditions are complex and have mentioned neurological, complex, bradycardia, ELS, and it's been confirmed they have over 20 diagnoses. (I question how many might be non serious type)

Would Dr's really be leaving someone living alone, collapsing all over the place and literally unconscious for hours? (they are 'difficult' and the sort of person wards seem very keen not to keep)

Or am I being an ignorant rotten ablest bitch here and need to listen to them and believe and center them?

@Mouldemort I don't mean to be rude but I have said a couple of times that I wont be saying.
It is someone I care about and have an obligation to and there's few others in their life at any level.

I can see why you find it incredibly difficult to know!

Because it does seem shocking, if true, that someone would be left by medical professionals to be falling unconscious all over the place. But pps with experience are saying it does happen, and I have no reason to disbelieve them.

But I agree with some others that the bit that she’s being unreasonable about is not accepting work around. Not letting you have a shed key to accept deliveries. Or if you’re as trusted by her and you’d need to be to be asked such big favours as they sound, a house key so that you can get in, take deliveries, do whatever work you were going to do, and maybe check on her!

If she means - I just need to sleep things off at unpredictable times, it would be better to say that than “unconscious”

Are they with Adult Social Care in your Local Authority? Sounds like they need a social worker

I suggest you look it up. Nothing like fibromyalgia, no. My friend has been diagnosed with it recently after having horrible symptoms for the last few months ending with a seizure, after which she was referred to a neurologist. MRI and CT confirmed the diagnosis, she’s lost her driving licence and her job as a result.

They have had a social worker and some key workers for a long time, apparently mainly overseeing their life falling apart.
But, I don't understand what work they actually do. There don't seem to be any goals or action, but maybe the person isn't making it possible and they have big caseloads of people who do.
I don't know. Maybe the limited time I can give is more than what the workers are allocated.
I do know using standard systems has made big strides forward to fixing some of the practical problems.

I do understand the person not wanting others to have anything like a house key because it's such a loss of independence, privacy, and security.
But the (equivalent of) not allowing a temporary 'shed' key (where they don't live or have possessions) so what they want and urgently need, can still happen in their absence if they don't turn up, has been very hard to make sense of.

There's some explanations up thread that I couldn't have pieced together alone.

I think they're right. If the person being 'passed out and remaining unconscious for hours' doesn't interfere with and prevent major moves forward happening for them, then it's being seen as nobody is believing or taking notice of this.

So either that is more important to them than getting the major practicle stuff they asked for (that will stop them falling further) sorted out.
OR
they are using rejecting things no one in their position normally would, to force attention to what's happening to them medically.

I started the thread frustrated and scared and asking the wrong question.

Was my thought too. A care assessment seems appropriate, if she would co-operate.

OP has there been a care assessment at all ? You could actually ask for this yourself if you suspect she’s at risk. The problem with adaptations to help her from day to day is that only the basics are free. If she requires anything more than grab rails and other simple aids etc, then that’s usually via a disabled facilities grant, which is means tested.

The biggest problem is that if she’s deemed to have mental capacity, she can’t be forced to do anything against her will. If she’s in denial about the help she needs it’s very difficult to arrange any sort of meaningful care or support. My MiL was similar when her mobility was severely reduced. She refused to believe she needed care and expected family to rally round whenever she fell - which was frequently. These things usually end the same way - with a fall or accident requiring hospitalisation and the acceptance that they need support

It is suspicious if these frequent losses of consciousness never happen in public or when with other people and also odd they have no diagnosis for this. Whatever other health problems they have presumably this one could be deadly depending on the cause, one time they may not regain consciousness.

I assume this is a close relative or I would be reducing considerably the amount of help I was willing to give it does sound like you are being used as a dogsbody.

They wouldn't have got a social worker without a care act assessment, I imagine.
I feel the issue here is that the person is rejecting support. This may be not letting community OT enter premises to assess for assistive equipment or, as OP alluded to, not turning up for appointments to discuss housing (they may well have been offered to be rehoused somewhere more suitable).
I know cases like that all too well and, with the best will in the world, social and health services can't help because the person is refusing to engage with anything offered. I am working with someone in a desperate situation currently and they refused care act assesment altogether because they they don't want strangers in the house despite not managing basic tasks at all due to complex health needs. I can't force them so my only option is to alert their GP and step away. I can't even complete a safeguarding referral because there is insufficient immediate risk and I don't have their consent to refer.

I assume they must have had a care assessment to have a social worker and key workers, and they at one point had carers.

But as basic things have fallen away ie: someone supposed to cook food, but there was no food to cook, so carer stopped coming to do that because person hadn't or couldn't, organize or pay for food.

OT assessment happened after being in hospital - grab rails didn't happen as no home to fit them in by the time the report was finalized.

Carers (who tbf there where issues on all sides with) dropped away when the place they provided services at did. Lost Gp when no catchment address any more. etc.

I may be unreasonable but it has seemed like the the person is just overseen failing and falling in a predictable downward spiral. But, I don't know the story from the workers end, and have struggled with the 'I passed out and was unconscious' so "of course" 'offers' or 'one chance only appointments' should just be remade and everybody should accept the reasons, and apparently that it may be the same next time.

Shocked disbelief that those circumstances don't make it happen and anger when I've tried to make paths round it. So maybe that's why workers appear to have passively accepted things getting worse under their watch.

A social worker would be the one to carry out a care assessment l agree, but the outcome of that wouldn’t be to ‘allocate’ a social worker, it would be to arrange a care package. OP hasn’t confirmed that. But l agree, if this lady has capacity then she can’t be forced to engage with support services and the whole thing becomes much more difficult. If there hasn’t been a care assessment so far, OP could make a request herself if she feels there’s a safeguarding issue. Either that, or if she knows the persons’ GP she could maybe alert them to what’s going on. At some point l think OP is going to have to step away as the person seems too difficult.

If she’s had carers in the past that does mean that a care assessment has been carried out at some point, unless she has the means to employ private care. But the rest is really odd because if care services were involved then all of the things you’ve mentioned here are safeguarding issues and should/would have been reported. Care doesn’t just stop without recourse to the authorities providing it.

It sounds very difficult, but maybe the best thing you can do is report the situation to social services as a safeguarding issue and let them investigate. Problem is, if she has capacity and refuses to engage with support services nobody can force her, even it’s to her own detriment. In my experience these cases usually end up the same way - with hospitalisation after a fall or accident, which results in a major rethink on support.

Then the answers will not be very useful without knowing the nature of the obligation. If it’s a neighbour, friend, husband or brother the answer will vary.

It is about capacity as was said
Have tgey had a mental capacity asessment?

if she’s deemed to have mental capacity, she can’t be forced to do anything against her will.

In any case op. Report your concerns to their gp.
Set your boundaries. Do not take on more than you can manage. If they wont put a shed key in a locksafe then stop deliveries.

Honestly it's impossible to know what's going on here because any of the things you fear could be true - she could be falling through the cracks in care or she could equally be a complete piss-taker who wants the world to revolve around her.

I work in a medical capacity and have seen cases where a patient has had serious diagnoses missed and been horrified - but on getting to know them better I can completely understand how this has happened because they are so incredibly difficult to work with and the doctors just can't get straight answers to any questions.

Equally a relative by marriage was disabled due to an accident and got an awful lot of support and sympathy for that but genuinely didn't deserve it. This was someone objectively awful who not only made zero effort to help himself but actually actively made his own situation worse and lied endlessly to anyone around him - and yet because 'oh poor Dickhead is in a wheelchair', no-one was allowed to question any of it.

Of course you also have the fact that two opposing concepts can be true at the same time and there's a chance what's going on with your relative is a mixture of all the things you fear. Are you not able to have an honest conversation with this person where you point out that 'because unconscious' isn't the answer to every question and that actually there are things they can do to help themself? Have you pointed out that you and others have finite capacity for practical help and indeed for compassion when that person seems set on self-sabotage?

@Catza I think it probably isn't generally actual total refusing. There has been some trying then rejecting carer services that haven't worked well.

I think agreeing to things but 'circumstances' then preventing on all sides, is likely to be closer, and taking up huge amounts of time to move forward by an easily lost inch, and generally everyone finding them difficult and draining.

@ThreadGuardDog Definitely not private care. If they really are 'passing out and being unconscious' for long periods, yes, there's a safeguarding issue being ignored by Dr's among others, which is what made me ask a clumsy question in the title.
They did end up in hospital, but where pushed through and out really fast (I think they where very resource heavy) with OT and GP to follow up, but by then home and GP gone.
SW suggested (to me and person) that I should help sort out some of it, so I started doing that.

@Mouldemort Thank you. I understand. It doesn't fully answer your question but I'm official NOK that gets informed, and do care about them.

@cestlavielife I doubt it. Certainly not officially. I know what you and everyone else is saying about drawing lines. I already did that which is part of why they are where they are.
I used the 'equivalent of refused a key to a shed' analogy to explain the 'unreasonableness' of how they think, when I was trying to find ways of getting around the failing to turn up at vital moments due to 'medical reasons.'

Refusing 'deliveries' right now will be what casts them completely adrift of entitlement to further basic provision, instead of pushing them over the line to an arranged (at their request) safer better situation where the things they need to happen could be navigated from.

I don't think I can just abandon them at this point while they still do have right to that provision. l think I need to use the valuable insights posters have given me to try and look at, and do things differently, before I leave them run themselves out of the right to what is still left.

@FullLondonEye yes to all of what you wrote. Especially the last paragraph. There have been so, so, many conversations. The thing they stick with as unshakeable is the passing out stuff, and that they are living in terror from it and why doesn't anyone care or do anything about this?

When I've been really hard hearted and read the riot act, that putting aside that this is the 'reason' they still have to let me make vital stuff happen around it, they end up so distraught and exhausted that I've eventually had to stop, as they are so emotionally distraught it becomes hysteria (but pulse is genuinely surprisingly low) and have cried to the point they can no longer make sense. This is definitely real and results in days of exhaustion and sleeping.

Others have also done this. Both short, sharp no emotion and and walk away, and long drawn out 'you have to make it possible' no one can help if you don't.

It hasn't solved or changed anything other than them admitting they are hard to work with and are often also causing situations to happen. They accept and admit all that reasonably freely, but not with the 'I passed out and was unconscious' situation. They say this is worsening disability on top of what was already serious, and accept me questioning it, but not solutions to work around it, as it is their 'medical situation that we are all not believing.'
I've gone down the 'it isn't about believing, it's about getting you where it can be safely explored route' which was working well, until the first important time they didn't show due to 'passed out and unconscious.' They where clearly confused when I finally got them. I told them 'well that's that gone then' and they cant accept that can be true 'in the circumstances.

I've also drawn a line and walked away frequently in the past. Things got worse .
I do think there's "opposing concepts can be true at the same time" just unsure of which ones are which.

Have to go, but thanks to everyone who posted.

I think all you can do is give ultimatums. As in 'if you don't give me the key to the shed then I can't ensure your package is delivered', and then you have to stick to it, regardless of their apparent distress. While it may not be all their fault a certain amount of personal responsibility is required where possible, but while others enable this person to get out of helping herself then she won't. I know it's not that easy - I have a situation where I've declared I'm going to stop enabling someone close to me, and that they'll have to sink until they're forced to swim. Ultimately I do still help them though, on the basis that the lower they fall, the more work it'll be for me when I inevitably have to pick up the pieces! 😥

Everyone reaches their point of critical mass though. You have to work out where yours is and not pass it. I think the fact that this person has admitted they are partly at fault during the tougher conversations means you know it's not all on the health services. You know they themselves are a significant part of the problem, no matter how much help and support you do or don't get. You can't let them drag you down with you so you're just going to have to hold the line more firmly when it's something you know they can and should do.

"Confirmed" what diagnosis? An mri and ct scan confirmed a fibro diagnosis? 🤔

I haven’t read the full thread but I fully agree with some previous posts - there are 2 issues here. It is sadly very possible that they are that unwell and being left with no help. But not accepting simple accommodations such as giving up a shed key seems unreasonable. It does depend on the reasons though, and there may be something more behind that ‘no’ - a previous incident that’s scared them?

I think that it would have been helpful if you had included this in your original post

When I've been really hard hearted and read the riot act, that putting aside that this is the 'reason' they still have to let me make vital stuff happen around it, they end up so distraught and exhausted that I've eventually had to stop, as they are so emotionally distraught it becomes hysteria (but pulse is genuinely surprisingly low) and have cried to the point they can no longer make sense. This is definitely real and results in days of exhaustion and sleeping.

Others have also done this. Both short, sharp no emotion and and walk away, and long drawn out 'you have to make it possible' no one can help if you don't.

It does sound as if the disbelief and questioning you brought here is something they may have picked up on and is very upsetting to them. They may be very sensitive and picked it up from your behaviour. Trust may be a big issue in their life.

The use of the word hysteria is very revealing in your post. If they read this how would they feel? Having days of sleeping and exhaustion after you have "read the riot act" to them sounds like you are inadvertently triggering something very deep and hurtful.

There's obviously more to this. It could be a form of post traumatic stress caused by the lack of medical care and being disbelieved.

It sounds as if the priority for this person is to be able to talk about the passing out and for you to listen to them and believe them before you get on to the practical stuff.

You know from previous posts that yes, medical problems can be missed and that the medical system can let people down. There may be no simple solution and sometimes just being a listener is what is needed. Show them you believe them.

Then you can move onto the practical things like the shed with the trust that you will hear them and understand and listen and in their own timeframe.

Agree..with FullLondonEye also you could call the Duty Worker in Adult Social Care and explain your concerns then ask for a welfare visit. They will check their file but may not be able to tell you anything as you are not NOK or have POA. You don't need to have family's consent to make a call to them and could remain anonymous. Then step away a bit for your own sake. Just a thought have they got a carbon monoxide alarm in their home in case gas is leaking and knocking them out?

Both things can be true at once.
They may genuinely struggle as they say, AND they are an unreasonable diva who is very difficult to help.
I have dealt with a person or two like that; they had genuine problems but ended up alienating most people by being awkward and fussy for no good reason.
I imagine there is some psychology behind that behaviour, but that's not for me to diagnose!

I would not continue to help unless they did their part. There are professionals that can help them. I would give them my perimeters in which I'm willing to assist and if they don't like it then they can call someone else.
Perhaps whatever your version of social, services is....Call them and let them know.
What would they do if they didn't know you?
I have experienced this with a friend, and I had to do that. They were mad at me for a good while but we are still friends many years later when they realized I helped them by not enabling them anymore. People will magically get it together when they have no other choice.

And Sometimes it will take a crisis and letting them fail. Sadly. I know it's hard though, really I do. All you can really do is let them know what you can and will do and under what terms.