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?

I've never seen this state.
Good reasons to believe no substance abuse (they'd need to be getting it free and aren't social) and barely manage a glass of cider. Have had bloods a few times, which I would hope would rule it out (maybe naivety there)

The person needs to take some accountability for themselves too. This is lacking these days. People cannot expect to rely on the state to sort them out to the nth degree.

This sounds like a nightmare - and I don’t think you can fix it. Do they understand sometimes and some not ?

I think you are being a saint and doing far too much. This person needs to help themself more, get a fall alarm, get a key safe. You can’t save them.

" non epileptic seizures" is another name for pseudoseizures, more of a psychological reason.

I will in the end. It's more I'm steamed up at seeing it all going to pot because they wont do the equivalent of simple things like give me the shed key, or enough hours as agreed for me to do the thing they need want and still expect to get..

TBH I'm unreasonable for being angry that many of the things the professionals should have been doing for them, have been achieved, and they're on the downhill easy bit to the new repaired more normal life they've been demanding for a long time, and now this is stopping it and they wont accept easy fixes that would allow them to complete, because they feel everything has to work around what they say is happening to them, even if it prevents them getting what they wanted that is clearly also really needed.

Yes, understandably each time they fail to turn up to an important appointment, the professionals are moving on, allowing the person to fall further and further out of society at any level, while they demand that this should not be happening, because 'medical condition' is at the heart of why.

I've possibly quite wrongly started questioning is something else going on here.

Some charities may provide a free trained service dog

Ah, I see what you mean. Do you suspect that this person won’t give you the shed key etc because they actually enjoy having you run around them? If they are so difficult that hospital staff are keen to get them off the wards, they may not have many people willing to hang out with them.

This doesn’t mean that you are obliged to do all this running. It may be that you will need to step back and do as a PP suggested - you turned up on Saturday, you are at work all week and not available on Sunday.

Some people foster dogs in their homes & all food & vets bills are paid by animal charitirs too

@frequentlybaffuckled it’s entirely possible they’re disabled and also manipulative and unreasonable.

If they have capacity then they should take some responsibility. My grandmother ran her daughter ragged with similar unreasonable behaviour. It was awful to watch but my aunt felt she couldn’t withdraw any help because she was scared.

Give and take is required for effective care to be given and that sounds long gone.

Cool
But they are frequently unconscious and you are looking after them quite a bit, but you’ve never seen them unconscious bit strange

@Dovesono Thank you. We do need to question difficult things sometimes.
I feel like a total bitch for for questioning it, but am also at a point I needed to ask others what they thought.

I made it clear whatever the situation this is a genuinely disabled and unwell person in a lot of difficulty and maybe I'm the person not accommodating what's needed..
I'm scared to ignore them, and scared not to..

It's frustration and fear. It may be disastrous if they don't grab the life ring this time and I genuinely care about them. But also know I can't make them be helped if what they say and what they do, are entirely opposite and am trying to make sense of it all because I want them to be ok whatever it all is.

Agree. Not only do I not believe a word of this, but I think it’s rage bait.

My suspicion is someone caring for a family member and being totally taken the piss out of - apologies for bad grammar

Some people cannot answer their door for a variety of reasons that particular day.

It is their choice
Or
It is part of their illness

Similarly, going to doctors or going to other appointments

One day they feel ok

Another day, they feel that they are not up to it

What is your relationship with this person and why are you looking out for them?

Without that information it's not possible to give a clear answer.

No one disputes that. But if that’s the case you give a shed key so you don’t treat people disrespectfully.

There is something called Functional Neurological Disorder FND - non-epileptic seizures which look like epilepsy but are not caused by abnormal electrical brain surges. Instead, they represent a temporary issue in how the nervous system transmits signals, often resulting in unresponsive spells or blackouts. Not psychological but organic and physical. Very difficult to diagnose and to treat.

This sounds like Functional Neurological Disorder which absolutely can cause someone to lose consciousness or become semi conscious for considerable periods and struggle to function normally afterwards.

Clearly they need some kind of diagnosis if this is the case but it would be a diagnosis of exclusion as it's a psychologically rooted condition. This is also the reason a doctor 'won't do anything' - there is no risk of physical brain damage as is the case with epilepsy and it cannot be treated with medication or surgery. In fact advice is that giving the symptoms (not the person experiencing them) minimal attention is one of the best ways to reduce their frequency.

No I think it's because they have irrational fears. I'm ok to paint the 'shed' fix the 'shed,' have it opened for me, and be in it when they're not there, but not have keys to it, because 'something' might happen... They can't define what.

People have become less tolerant of them as they have stopped having the basics of life.

Do you think they’re self-sabotaging on purpose? I had a friend that did this. She would ask me desperately to help because something had gone horribly wrong for her. I’d spend days sorting everything out so that all she had to do was post a letter/reply to an email/answer her phone - and she didn’t do the one simple thing she had to do after I’d done 95% of the work.

It was definitely self-sabotage, but looking back I think she also got some pleasure in seeing me stressed. I’d ask yourself if this person could be similar.

In your position, I’d sit and calmly lay out your problems and your feeling, eg about the deliveries. Don’t list every single thing, but do give a list and include how she messed it up. If she responds by saying she can’t help it because she keeps falling unconscious, I’d say something like “I understand you’re saying that. However, having tried repeatedly to help you, I’m afraid I can no longer do it.”

Then watch from a distance and see what happens. If you have concerns about her safety by all means contact whoever you think you need to, but take a step back for now.

You say they want help but also saying they won't do this that and the other because it "interferes with autonomy". So I don't believe either you or the professionals which you think should be doing more are actually able to do more.
As people mentioned on this thread, a person can both be disabled and an absolute pain in the backside. It sounds as though they had a lot of involvement all of which has failed and, unfortunately, it does happen in some cases and nothing more can be done short of capacity assessment.

I don’t think you are unreasonable to ask questions in these circumstances. This person does appear to be quite demanding of your time and efforts, but less keen on holding themselves to account. I don’t think it is unreasonable to question this “being passed out” for hours on end, with health and social workers aware and doing nothing at all. It would seem less likely than the alternatives- which are: they are unaware of these symptoms; the individual is not accepting of care/support offered or available (often as it is not what they want), thesymptoms described are being exaggerated (e.g. sleepy rather than unconscious); symptoms are consciously made up to garner something (your time, attention, things to be done in a way that suits them); or possibly a functional illness.

In my experience of these situations (as a medical professional) is that they are often complex. Professionals do get it wrong, of course- misdiagnoses/delayed diagnoses or incorrect support put in place, for example. However, also quite common- especially in certain types of conditions- is that there is a mismatch between needs vs wants, and personal responsibilities vs professionals/ services’ responsibilities. And there can certainly be an element of the importance is that the demands are met being as important as the support actuallt meeting their needs, as accepting the demands made is seen as being validating of the illness, and failure to meet demands as being akin to calling them hypochondriacs, even when that is not the case (especially in conditions which are harder to diagnose or where there is a functional component).

it is not uncommon for patients to be very demanding for referrals, assessments and so on, yet appear to be absolutely unable or unwilling to work with us. For example, not turning up to appointments or for investigations without calling to rearrange and then being incandescent that they have to wait for a further appointment (despite having wasted their opportunity, and taken a spot someone else could have used). Or being furious that if they’ve DNA’d 3 consecutive appointments that they are discharged back to their GP and will need to be re-referred- with the corresponding waiting time- and we won’t simply re-instate them. There will sometimes be valid reasons- though I think the vast majority of the time patients should be able to cancel, even if on the day. If for no other reason, the admin team can reappoint relatively quickly.

patients who frequently miss appointments, are poorly compliant with treatment or therapy and so on, but are very demanding in terms of wanting referrals, appointments, input and treatment- often have reasons as to why they behave this way. Whether that is chaotic lives, seeking to have an unmet need addressed in less than appropriate ways and so on. It sounds like your friend/family member may be wanting help but not prepared to take personal responsibility for their role in accessing it and adhering to treatment. It may be that they have been let down by professionals caring for them, but given your recent experiences of their behaviour, it seems entirely possible that the problem is largely if their own making. We are busy and if patients don’t attend appointments or decline support unless it meets their ideas or preferred scenario (however unreasonable they are), then we can’t force them to accept help. If they have capacity, they have to accept the consequences of their choices.

it does sound to me like there is a combination of genuine illness and accompanying disability, which are causing specific difficulties which they need help with- but that the individual is making any help that might be available very difficult to access by failing to take any personal responsibility for their role. e.g. failing to attend appointments and having wildly unrealistic expectations as to what can and will be done for them, and compounding that by refusing to accept help in any way other than that of their choosing.

My advice is to set very clear boundaries as to what you can and cannot do, and when you can and cannot do them, as well as your expectations of them and their behaviour, their responsibilities. If they can’t do their bit, you are absolutely entitled to minimise or withdraw your time and efforts.

I'm sorry. You are so far wrong.
I am disabled, and as I have already said this is someone genuinely disabled and clearly physically in poor health, who I can't work out if I should actually be doing more for them, or if I'm an idiot who needs to recognize that no one would be left like that.

Some people with brain injuries can also make them difficult, abrasive, combative, lie even etc.

So it could be true. That they are disabled in that way, or not, and if the latter that they are lying because they are lying, or lying because they have a brain injury lying.

It’s literally impossible to know.

All you can do is fill your cup and pour from it as much as your willing. That’s it really I think as there is no way to know.

They wouldn't be able to care for the dog, or ensure a stable home for it tbh, but it's interesting to hear that.