Stop me from losing my shit on FB... (disability/pub/dementia)

[WiddlinDiddlin]

I am really trying to sit on my hands and as I am here, clearly failing.

My Dad is currently in hospital. He is 84 and over the last few weeks has had a few short seizures (falling over, losing control, then coming round and lucid and aware very quickly) recently, two of them in his local pub.

The current situation is that the hospital suspect epilepsy related to dementia, and think he may regain some degree of awareness/lucidity/sense and come out of hospital (though not to his own home I suspect).

For the last two/three weeks, he's been taken to his local by my sister, as he no longer drives. He had a seizure at the pub a couple of weeks back - hospital - sent home, seemed ok... (hasn't driven since about a week before that though, will not drive again, car removed etc).

He was in the pub again on Wednesday, with my sister, and had another seizure. He came round and the ambulance call was cancelled and they advised her to drive him in, so she did.

He then had another seizure at the hospital and this time they've kept him in.

Today my sisters gone back to the pub to catch up with friends of hers and his - he/they have been going there forever, since he was in his 20s and since us kids were 3/4 years old... we've known the owners, and every tenant landlord for decades (to make it clear this is not some random pub).

The current landlord has taken it upon himself to tell my sister 'we're not equipped for people having medical incidents here, don't bring him again' - after overhearing her say that he's not going to be living by himself again, or driving again, or going anywhere alone.

Now I could understand banning him for being a rude, cantankerous old goat, or a bit of an arsehole, he is/was all of those things.

But surely you cannot ban someone from a pub because they might have a medical crisis, whilst supervised by another adult.

Does that mean all disabled people are banned, everyone with an underlying health condition is banned - surely that is not ok.

No one is expecting the pub to look after him, we never have, no more than they look after the people who go there and get falling down drunk, or in floods of tears because their dog/horse/wife died/left them...

I do understand that seeing someone have a fit is pretty traumatic... but if you want to work in hospitality and run a pub, you're going to see humans being humans, surely!

I really am fucking angry - the chances are he is going into a home and at BEST we may be able to take him out for an hour or two, it would be brilliant if he could go somewhere thats part of his routine, where he's familiar with the building and theres people he knows - and now that's been taken away.

I am also fucking furious that the landlord decided to tell my sister this TODAY when he knew she was straight there from the hospital feeling pretty upset about Dad and whats happened - it's pretty much removed the one thing she was clinging to that might be close to 'normal'.

AIBU? Is this actually ok?

Nope. Try again. Disability discrimination pure and simple and it’s against the law.

Nope, it is coincidence.

We're pretty sure now that he's had several in his sleep, some sat in his chair, there was the most recent one at the hospital. (Unexplained bruises, falls he can't recall having etc).

He has had seizures at the pub because he is either at home, in bed or sat out in the garden, or he is in the pub. He sleeps a lot, sits in an armchair, cooks his tea, pub for a couple of hours then back home and repeat.

If you are only in a couple of places, then if you're going to have a seizure, they're only going to be in those places. Plus if you're alone in one of those places most of the time.. you can really only be witnessed having a seizure in the other!

His consultant has ruled out alcohol or withdrawal from alcohol as the trigger. The current theory is dementia as the cause of the epilepsy.

And why would that be down to you, assuming he hasn’t been declared as having no capacity to make decisions for himself ? If OP’s dad only visits a limited number of places, then it’s more likely that the seizures are going to occur in the places he visits. They may well have nothing to do with alcohol. Seizure coming on suddenly can indicate the start of dementia.

"And it's incredibly disruptive to other customers who may very well have complained."

Just our daily Mumsnet reminder not to be disabled in public.

I’m not surprised by the YABU stats as MN is rampant with ableism and ageism.

of course you are not BU

A public houses are licensed through the local authority. They have a licencing officer responsible for enforcing the licencing laws. I am not sure if they cover discrimination law but I would raise the issue with them.

Thing is it's true about other people complaining and telling the staff, management, owners that because it's disruptive then it shouldn't be allowed. They shouldn't have to see it, they shouldn't have to wait because the person in front needs a bit more, they shouldn't be for one millisecond slightly inconvenienced.

I've not only seen it happen when I'm working myself and been told it, as someone who has a few issues of my own and works with the public, I've been told I shouldn't be allowed to because although I'm good at what I do, my issues mean it happens a bit slower than people demand. And we're not talking hours here, it's very minor and some people don't even notice but I'm just assumed to be incompetent, thick, awkward for the sake of it........ And many more.

Absolutely nothing to stop that happening, it's why this whole push to get disabled people working won't work because people don't want to have to be around disability, have it affect them in any way, even very minor ones that aren't really an issue. You can have all the laws you want but until that attitude is tackled nothing will change.

Inclusive society? Hollow laugh

Licencing might well point OP in the right direction, but maybe a call to dementia UK would be helpful as they'd likely know where to start.

He doesn’t seem concerned so it doesn’t matter what you or the landlord think.

it’s illegal to bar someone from a pub because of their disability.

Oh, WiddlinDiddlin, don’t bring facts, professional diagnosis and common sense into the discussion, the armchair medicos were/are all having such a lovely time making diagnoses and piling in on you for even daring to allow Dad a sip of beer and as to taking him out of the house to public places…..well…..irresponsible. (Rolling eye thingy) 🙄

I do wish you and your family all the best and hope the pub tenant gets some sense knocked into him and apologises for his crass stupidity.

I know it's silly of me @grumpygrape, I've been here long enough, I really should know better eh!

I did enjoy the side-fight about Morrisons though, that was a diversion 😄

@AsteroidEggs It could be considered a reasonable adjustment, as a safer and more private space for her.

I think you are being a bit unreasonable because this isn’t an isolated incident - it’s happened several times at the pub, and watching someone have a seizure can be tremendously distressing for people. The process of correctly medicating someone for epilepsy takes trial and error so the odds are that he will have more seizures whilst the balance of meds is tweaked. You also need to prepare yourself for the possibility that his dementia could rapidly worsen with the introduction of anti-epileptics. Lastly, seizures in dementia patients can be triggered by external stimuli - noise, exertion, substances eg alcohol, so the pub is probably not the most rehabilitative environment for him.

Just to add - legally, pubs have right of refusal over anyone they deem unsuitable however this doesn’t supersede disability rights, so he is legally in the wrong to refuse entry on the grounds of epilepsy. I really do think that in your father’s condition though, the pub is not the ideal environment for him at the moment.

@TaggieO You could have saved the time it took you to post both those responses by reading my posts - all those points are already covered.

Nice to know you don't think I have his welfare as my number one priority though - always good to be kicked when you're already down.

Which would you rather not take him to the pub or the next call could be his been found dead in the toilet from a seizure? I have epilepsy and haven't had a drink since because you don't know what will trigger one sometimes it's nothing and I just have one

Im guessing that your son isn't down the pub drinking? I stopped drinking when I was diagnosed with epilepsy I've also never driven a car it's called risk management

Not specifically no but we've had a similar reaction at other places too.
Assuming this gentleman has capacity he is allowed to make unwise choices. If he were driving and public safety was an issue of course that's different but someone with dementia choosing to spend time in a familiar place shouldn't be an issue.

But if you read the OP’s updates he hasn’t been diagnosed with epilepsy. And the alcohol is not triggering the seizures. There’s evidence of seizures while sleeping and while at home alone. There’s also a suspicion of TIA’s - nothing alcohol related and OP says the seizures are likely linked to the onset of dementia, not epilepsy.

But regardless of that, if he still has capacity then he still has free will. And he is still entitled to go to his local for a pint and his pipe outside on a bench if that’s what he wants. That’s why we have equality laws which make it difficult to set precedents which can lead to the erosion of disabled people’s rights.

And OP is correct when she says he’s just as likely to have a seizure in any of the very limited places he visits. So, and with apologies to OP for being blunt, if OP is going to find him dead from a seizure, it could just as easily be in his own home as the pub toilet. It’s not a reason to curtail his rights - and illegally at that.

Many people with epilepsy do drive - they have to be seizure free for 12 months, either with or without medication. And yes, the risk has to be managed. But different people make different choices - hopefully based on sound medical advice. At the end of the day it’s not a one size fits all situation and the law supports personal choice provided the criteria is met. Which is as it should be.

Based on what ? OP has already said he won’t be going anywhere for a while but if he recovers sufficiently a pint in his local isn’t unreasonable.

Like a previous poster, I work in care.

Yes, it's not pleasant to witness someone having a seizure. I used to work with people with learning disabilities, sometimes severe, and some would make loud noises, behave in ways some people might find disruptive, etc in public. I don't believe this means they should never be taken to public places and indeed to suggest that is very discriminatory. It's not the nineteenth century. Quality of life - which includes doing things you enjoy and value - is important.

I haven't read the whole thread so apologise if I'm repeating points made by others. The pub landlord's attitude is completely unacceptable.

If you’d read the updates you would know that he hasn’t been diagnosed with epilepsy. The seizures are not alcohol related and are likely linked to dementia.

My mother is 94 and has advanced dementia - the onset of which was marked with seizures. In dementia the seizures are usually treated with the newer anti convulsive drugs such as levitiracetum - often at lower doses. And rather than worsening the dementia, as you’ve suggested, these drugs can actually relieve some of the symptoms and improve cognitive function. Alcohol can be tolerated in moderation with these drugs and the recommendation is to avoid alcohol for the first couple of weeks and then see how well it’s tolerated.

If OP’s dad is only having a pint or two and they’re proposing to replace them with alcohol free beer, then where’s the problem ? Familiar routine and surroundings are important in the day to day management of dementia, and visiting his local has clearly been a part of that. He’s had two seizures while there. Doesn’t matter if it’s ten. It’s still not a reason to ban him just because it makes others uncomfortable.

But as a lawyer you should also know that the landlord acted illegally in banning this man from the pub on the grounds of disability. It’s direct discrimination. Why does the establishment need to take responsibility for someone elses’ known disability ? I really don’t think we’ve yet reached the stage where disabled people can’t enter a leisure establishment without a pre arranged agreement.