Unsocilisted advice - was I bu?(17 Posts)
DM has a seizure disorder, takes them frequently and sometimes in public (bus , shopping centre etc). It's not epilepsy , has a psychological cause and can't be controlled by medication. Last night she had one in a local restaurant (cheap chain place) & manager came over to help me. I've been DM's carer since I was a child so very used to it.
Anyway last night lady near to us was sitting watching and asked me how long exactly DM had been fitting for. Said she knew a little bit about fits and why wasn't I giving her rescue medication? I said we didn't have any, but we were fine thanks and nothing to worry about.
She seemed rather put out and started explaining to me how very important it is not to leave the house without rescue meds and she knows a bit about these things , I must make sure to take them with me etc. I didn't want to explain mum's medical history to her as no idea if she was a Dr, nurse or just had a friend with epilepsy or something. So again I said, honestly we're fine but thank you for your advice .
She continued to watch and offered to assist me again - I said thank you but no, we are fine.. She seemed offended and finally turned her back to us.
Manager made some sort of comment about unwanted advice and leaving people alone, which she must have heard.
I feel a bit bad now , not many people are very willing to help in these situations and it must be hard to know what to say or do - hard for me to come up with answers when people ask what I want them to do as realistically the answer is 'very little', there's nothing anyone can do iyswim.
Did I handle it right? Perhaps I didn't come across as very grateful for her help but I was unsure of what to say whilst protecting mum's privacy. I'm quite socially anxious/unconfident and worried she must have thought all sorts, her face was like thunder when I said we didn't have any medication to hand ..
Not much else you could have said. I think you handled it well.
I would just have said 'I'm sorry, but you don't know my mother's condition. Rescue needs won't work for her'. You don't need to explain everything to her.
But you did nothing wrong. The woman was just trying to be helpful, but was misguided, and finding the right thing to say on the spot can be tricky.
I would have saud the same but maybe she cant have rescue meds though i've a bad habit of trying to explain myself to people when really I shouldn't.
What a difficult problem op; sorry you have to deal with this. I think it is something that must happen regularly, so it might help if you have something to say which will reassure a helpful stranger without saying anything you think is too private. I think it is easy to feel that the stranger is being intrusive, but it sounds to me like she was genuinely concerned and didn't know if you were in a position to deal with the emergency (you didn't say in the op that you told her you were a close relative who understood the problem).
If I were you, I might say something like: "I am her daughter; she doesn't have epilepsy so her doctors have worked with me on how to help her through her seizures not using medication, as medication is completely useless (and even dangerous) for her. Thanks for your concern, but she will be better soon." If you smile and look as confident as you can, that will reassure everyone too, but no pressure to do that if you don't feel up to it.
Bewty has given the exact advice I was going to give.
"Thank you for your help but unfortunately rescue meds do not work with her condition"
Is more than enough explanation anyone needs.
I don't think you were rude, but the Manager's response was. That's not your fault, though.
Pseudoseizures/NEAD presumably? That's very difficult for you to deal with and you have my sympathy. I agree they are best ignored and will stop if no attention is being given.
It can be really hard to explain NEAD to members of the public, who as in your case assume they're seeing an epileptic seizure, which in fairness the two can be hard to differentiate visually. I think the advice others have given about just saying thanks but meds won't work with her condition is a valid explanation- you certainly didn't do anything wrong!
I don’t think the managers response was rude. It sounds like he was berating the other woman for giving unwanted advice. Have i read it wrong?
You did fine OP and you weren’t rude at all.
You said you didn't need help but she carried on sticking her nose in. It was she who was rude.
I always remember a man I know...at a party in London at quite a posh house. This woman we both knew had drunk too much (we were all in our 20s) and one of the girls' who knew the host was making a HUGE fuss about this drunk lady...saying things like "Oh! She must have taken drugs! Is she a drug addict or something!? Oh get her out!"
And this man I knew who was looking after the drunk lady said firmly
"Your concern is noted but it is misdirected. We don't need any help from you"
As she fluttered around dramatically calling attention to the poor drunk girl.
I thought that was a great response.
Phew , that's a relief . Yes NEAD, very difficult indeed to deal with - wider family (mum's parents) won't accept that it's not epilepsy , and apparently chance of control being gained is pretty slim as she's been having them since she was 11 (now 52).
I think having some sort of ready made answers is a good idea actually, that could really help. Explaining the pseudo part of it is the most difficult, I usually just say she has a disorder that's a bit like epilepsy - a colleague of mine used to say it was 'attention seeking/fake' and she's a specialist nurse (!) so worry what others would think.
Thankfully last night was actually a minor one , compared to some episodes , she was round and orientated within half an hour so that's good.
I agree having something rehearsed would be sensible, then you don't have to have the pressure of trying to explain while doing what you need to for your mum. How about "thanks for your offer of help but in this particular situation the only thing we can do is wait it out and it helps not to make too much fuss around mum"
It must be really stressful for you both to find yourselves in the middle of a nosy crowd when that's the last thing you need.
Unsolicited medical advice is a pain. I've recently been diagnosed with two more auto immune conditions, already having colitis, plus IBS. The amount of unsolicited health advice is overwhelming. Some good-natured, some along the lines of 'please buy this snake oil I'm selling thru MLM'. Trying to find a politer response than oh do fuck off....
I get a lot of "helpful" advice when out with my disabled sibling.
Over the years the line I've found works best to get rid of them is "Oh thanks, but for his condition what I'm doing works best, we don't need any help."
If they carry on (or try to pry for details) I say a bit more firmly "I'm his sister, and I'm following his doctor's advice, we don't need any help but thank you."
If they keep going, I move on to "I appreciate you're trying to help, but honestly I need to concentrate on him now" and then maybe to "I know what I'm doing, thanks anyway".
His condition is stressful to deal with, so having rehearsed lines really helps me deal with interfering types on auto pilot while still dealing with him.
I've only once escalated to "you don't know the first thing about him, so fuck off".
I feel for you, I think you handled it the best way under the circumstances. My DM has epilepsy and it could be stressful enough looking after DM in public and keeping her safe/comfortable without dealing with the attention both positive and negative. I understand the lady was trying to be helpful but she didn't need to be forceful about it, or take the hump when it wasn't warranted! I bet your DM is so proud and appreciative of your love and support
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