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 think that you are far too enmeshed in this @frequentlybaffuckled . It will only end in you getting more upset and frustrated with the lack of cooperation from them.

I would seriously suggest notifying your local Multi Agency Safeguarding Hub (the MASH) or equivalent, there will be one, giving full details and taking several big steps back.

Not believing that yes, people can be left with serious conditions to cope on their own is more damaging. Totally mumsnet reply though

And that's what pissed me off to the point of asking the question.
I have my own disability, and expect to meet people half way as best I can, not expect others to be responsible for making it not have effects on me, but I'm not them, and struggling to decide if that's reasonable in their case.

And I kept coming back to would Dr's let this situation be normalized.

If they’re genuinely having recurrent episodes of prolonged blackouts this isn’t something that would be dismissed without investigation (including options such an implantable loop recorder particularly if history of bradycardia). One episode of prolonged unconsciousness alone would be enough to prompt a hospital admission and inpatient investigation.

I suspect sadly this person has been offered these things and has declined them, which if they have mental capacity they are perfectly entitled to do. Unfortunately with the resources available it is simply impossible to keep chasing patients who decline investigation/treatment.

If they really want medical input now, they genuinely haven’t had investigations, and it’s happening a lot- present to A&E.

In the meantime I think you need to protect yourself.

I don't think that you are able to see the wood for the trees atm @frequentlybaffuckled . Let the professionals take over, for your own wellbeing.

Credentials are nearly 30 years in frontline social services in saying this

Is this person known to adult social services? Does he/she have any formal care in place? I would be inclined to take a step back from helping them as it sounds as if it is negatively impacting on your own health.

I am afraid they would. I have been traumatised looking after a seriously ill partner for five years before his death. It was fine in hospitals; it fell apart when we were at home. No joined up support at all.

I didn’t believe it- I do now that I’m disabled. GP, Consultants, Cardiologist knew that I passed out on rolling over/standing/lifting my arms but there was absolutely no support. They knew I hadn’t been able to shower/bathe for 3 years and did nothing. There was no advice or medication offered, just discharge and told to monitor it (which I had done for 5 years prior). I had to fight for beta blockers (and only got them because of a locum doctor doing some standing heart rate tests which I had previously begged for from the cardiologist). With betas I can now sit upright in bed without passing out as my heart rate is not so high.

I genuinely would have never believed someone about the lack of support/medical attention so can completely understand you- unfortunately, it is absolutely the norm for anything that isn’t a well known medical condition.

On it never happening in a public place, I can see from your point of view (because again, I used to think it) but offer the alternative experience I have now that they only go in public or meet friends when they’re feeling well enough that it won’t happen.

Tldr: Yes, doctors really do leave people living alone who collapse all over the place and are unconscious for hours (it unfortunately happens a lot, especially to young women). You’re not horrible, it’s incredibly hard to understand it unless you or someone you live with goes through it.

A lot of the ways older people/those with disabilities are left are disgusting. And, more occasionally, people not in these "categories".
I've heard too many stories, from too many people, not to believe this might well be true.

I wouldn't call you an idiot. Other than that, it is likely to be the latter for reasons myself and other people in the medial/clinical field outlined.

I think there are many people who fall through the cracks. Services are so stretched, they can't run after people who are making it difficult to help them. GPs have such huge case loads, they must be constantly having to cross their fingers and hope people will be OK.

And even when well funded services exist, the person needs to be able to work with them. My city has done a huge amount of work on homelessness and someone I trust, at the heart of that work, has said that nobody now needs to be homeless, and if they are, it is because they can't or won't engage with services. That's usually mental health or addiction issues.

This case sounds slightly different but it sounds like they are not really helping themselves. It has echoes of many of the people on the Cockroach Cafe thread, where elderly relatives insist they can cope, refuse any kind of formal intervention and support, yet expect their children to run around after them and sort out the resulting crises. The cockroach cafe is a very useful place to air frustrations, explore the expectations that are being put upon you, and decide what your boundaries are. Sometimes you have to step back, tell them their expectations are not reasonable, and hope that it doesn't take a crisis to bring things to a head. I wonder of that thread might help you?

You obviously can't explain your relationship to this person, but if they are just a friend, you do need to know it's OK for you not to sacrifice your own wellbeing for theirs, because we ultimately cannot save people from themselves. And if it's a relative, well, the same really, though obviously it's harder to back off. But sometimes you have to or you will both go under. My alcoholic relative who could not accept help did die, and we all felt terrible about it, but there was literally nothing any of us could do unless they were prepared to meet us at least half way. Life is hard sometimes. I hope you are OK, you are dealing with a lot.

Why does it matter? If you want to support them, do what you can, being clear on your limitations and what you can and can't provide. I wouldn't be telling them they need to take responsibility/provide practical answers etc - that's up to them. If their lack of practical solutions makes you unable to give the support they want, say that. Maybe they're a manipulative liar, maybe they're extremely disabled and receiving inadequate care, maybe both. They're not mutually exclusive. Unless you're legally responsible for them, why get worked up about it?

I know someone who falls into unconscious, they are still under investigation but in between are able to work.

It seems like this person is very unwell. No reason not to believe them. You don’t have to cast doubt on their whole situation in order for you to choose/justify how much time and effort you invest.

Regarding your involvement, you may need to pull back a bit anyway. It seems like you are pushing beyond their comfort zone/tolerance level and then becoming frustrated.

I can understand both perspectives, but you can only choose your own actions and responses, and can’t change anyone else.

You need to set your own boundaries, especially as you are disabled yourself.

Some observations:

• just because a person is seriously unwell does not mean that they will accept support on other people's terms. Anyone who has ever been sick and has ended up turning down offers of help that seem inappropriate or inconvenient will relate to this. Sometimes people have boundaries that they will protect at almost any cost, and that could be down to their values, or to experiences of past trauma, or to all sorts of things.
• if a person has the mental capacity to make decisions about their care and support, no one can force care and support on them. The same goes for living arrangements and everything else. It is always presumed that a person has mental capacity. The bar for proving they do not is high, and is in any case issue and time-specific. However, what this also implies is that most of us are expected to make our own decisions and deal with the consequences of those decisions. If you are running around after someone to the extent that you protect them from any possible negative consequences of their decisions, they are not likely to start making different decisions.
• as a society, we do not generally accept 'I was too anxious' or 'I was too knackered' or 'I was too depressed' or 'I forgot' as reasons for not turning up to things. These explanations do not tend to attract much compassion, even when compassion is needed. We do however tend to accept 'I was unconscious for a medical reason completely out of my control.' I'm not saying that the person in question is making it up - they could perhaps be entirely honest (and it would maybe make sense for them to pass out at home only if, for example, they are tense and on high alert and full of adrenaline whenever out). But if they are not always being entirely honest, it is easy to see why giving the explanation they are giving will be easier for them and why they might be heavily invested in emphasising their helplessness.
• people can have a very complex relationship with their illnesses. Messages about self-care or accepting practical solutions can lead people to feel blamed and invalidated. Believing entirely that something is beyond your control is easier. This does NOT mean that I think people are to blame for their illnesses or want to be ill. It is just to point out that it is complicated. Illness can become a way of life and a whole identity and anything that seems to threaten that narrative can be very distressing and difficult to consider.

I had post viral chronic fatigue, I was literally left to rot. I had consultants, but they wasn't interested. I couldn't get to appointments. I was trying to care for my disabled child at the time. A lot of benefits went unclaimed and if it wasn't for family, I don't think I would have survived.
I know someone who has seizures. They do go the equivalent of unconscious. They were given a phone number to try to get an appointment, after the third one. Nothing is being particularly done. This was after a head injury.
I used to do home care. If it wasn't for neighbours or family, a lot of people would life miserable lives, having a level of 'care' that just about keeps them alive.
It's tough when people aren't at a level were they'll allow others to take over, so their life is sorted out, but you want the best for them and could fix things. You've got to decide what you are willing to do and keep reminding yourself that they have autonomy.

@jacks11 You are describing a heap of things that I think are very accurate. Paragraph 2 you have hit the nail on the head with what I feel is going on with them emotionally regardless of what is or isn't medically. Thank you for taking the time to write it out. It's a painfully accurate summary in places and I will be rereading it (probably a few times)

Part of why I asked the question is because I'm thinking I need to look at it from a MH POV not trying to solve the practical issues that are apparently in their way..

Sorry I'm not ignoring people, threads just moving too fast.

Yes I agree there's a level of enmeshing that I'm trying to change.

Yes the person is known to welfare services, has had professionals around them, who seem entirely absent at critical points (I've sent messages and had no response either) and it has been hard for me to watch them doing very little even if now I can see part of the reasons.
But there are some things that are quite standard, to stop situations deteriorating, none of them seem to have been done, the person doesn't know about or understand them, and it seems odd that key workers haven't suggested them, and I've had no hints towards answers asking if there are reasons why not.
Its clear they've on occasion gone for easy answers that will cause more debt which the person didn't understand would be the result and I can't see how it could be seen to be in the person's interest.

Right now things are at a point where just a little bit of practical support from professionals could leave them with so much less work going forward, but they don't seem interested

Or just a little personal responsibility from the person could bring an awful lot home for them.

I'm going to try and find a different way of dealing with it all

Is it dissociative seizures they’re having? Some people can dissociate quite frequently? Do they have a trauma history ?

Very difficult to "diagnose and treat", a bit like fibromyalgia then?🤔

Hi op.

it sounds like there are a few things going on with this person.

it’s not uncommon for people with disabilities (particularly those acquired through illness or injury) to develop anxiety and depression.

I was referred for counselling after my accident and the referral was rejected on the grounds that anyone who wasn’t able to walk following an accident would be anxious and that my anxiety was based in reality and therefore their programme couldn’t help me.

i have made official complaints at a couple of healthcare providers who didn’t make reasonable adjustments when I asked them to and I have had official apologies.

for example I am frequently non verbal in busy environments and in stressful phone calls but my gp surgery had been ringing me and telling me stuff and then putting down that I had consented to stuff when actually I couldn‘t talk. That sort of stuff.

now I’m an intelligent and (generally) articulate person and I put in complaints in those situations because I know the law and I don’t like being treated like shit off a shoe, but it’s easy to imagine how if you are not so experienced and don’t know the law then healthcare just becomes a scary experience where people don’t listen to you and do stuff to you that hurts and you don’t understand.

from the healthcare providers point of view, they just see a non compliant person. It’s incredibly rare that they’ll stop and think about barriers to healthcare and the welfare of the person, you’ll just get pushed down whatever pathway they can think of whether it’s appropriate or not.

as the gp said when I finally saw him “oh my gosh you’re a lot iller than your file suggests!”

no shit. Was it the wheelchair or the non verbal and communicating by typing on a laptop that gave you that impression?

You can be disabled and also not be a great person. Not all disabled people tell the truth about everything.
(I am also a disabled person)

What exactly can a doctor do? If the person has capacity and agency then it’s broadly irrelevant what a doctor thinks or recommends.

My grandmother was offered a variety of interventions/treatments/support but refused it all, preferring to be dependent on her daughter.

People with cancer refuse life saving treatment. It’s entirely possible there are treatments they have refused. You’re clearly enabling them in some way and perhaps that’s inevitable - impossible to know without understanding the relationship - but if you aren’t willing to stand firm and refuse to put up with the bollocks then nothing will change.

i would like to point out if someone is having an EPILEPTIC fit that goes on for more than 5 mins this is a medical emergency and you can go into status epilipticus,

if they are not epileptic then the 5 min rule remains but isn’t as dangerous to begin with

please never ever ever ever let someone fit for more than 5 mins if epileptic

Someone being UNCONSCIOUS for hours would require medical attention.

someone post icital, is different, but someone actually unconscious for hours needs checking every time.

Trying to respond.
In a not nasty way everything was been left to the professionals, because the message was it was all way more than anyone but them could help with, and the person was entitled to lots of things that we couldn't give them.

I'd like to say nothings changed.
But now there's a situation where for whatever reasons what professional help they have been getting, has overseen them falling to a a very low existence and deep debts and bigger issues practically as well as everything else.

Instead of lots of things they where 'entitled' to be given they just oversaw them loosing what they had.

I found it difficult to understand why most of the things that would normally happen, didn't seem to be and started using the standard systems and things started to work and get much closer to some sort of potential future where at least their basic survival could be covered.
Only at the last hurdle I've hit these issues.

@BishyBarnyBee Sounds like I should have gone to the Cockroach Cafe thread in the first place!

@DiscoElysia Thank you for another helpful detailed post about stuff which is ringing bells.

@Bowies
I'm not casting " doubt on their whole situation in order to choose/justify how much time and effort you invest" that's very unfair.
I'm already giving them everything I can, (and a few things I couldn't afford) and pushing to get them out of the situation they're in. It just isn't enough, because I can't spread it out and stop and start.

I can take time out and go do things, but I cant magic up more time to finish jobs when they halve what I've put aside, or get others to repeat offers for them when they haven't turned up to take them.

I'm questioning if the specific part of what they've fed me as the reason, is a physical possibility, because I can't work out if they need their door putting in and an ambulance calling, or may have a MH issue causing them to self sabotage, or just see me as an idiot to use as they fall through the bottom of life and beyond and they're right, the professionals will just watch.

@Octavia64 Sorry you went through that, and the other posters who've put me right that it's more complicated than 'would Dr's allow this to be happening.'

@Merryoldgoat I suspect even those failing them are also enabling them in a different way. Leaving them to get on with it hasn't worked, refusing to tolerate it hasn't worked.

What is your relationship to this person?