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for not helping her when she was really ill and screaming?

(337 Posts)
ariane5 Fri 22-Mar-13 10:32:44

This is a long story sorry.

I currently go to my mums house every day as dcs all unwell and my mum lives near dcs school and helps me, as does my sister.
I don't drive so can't manage to get dcs about by bus etc due to their health problems.

My sister has epilepsy and when she is well she helps me a lot (esp since my dd2 was diagnosed diabetic in dec).when she herself is ill I am there so I help her which means my mum doesn't have to leave work.
The thing is she has a lot of absence seizures and she screams, cries out, goes rigid and doesn't know where she is, she also swears a LOT during them which is not nice for dcs to hear.
She wants somebody to hold her hand till it passes which I try to do but its so difficult as often she is upstairs so I have to leave dcs downstairs and she then won't let go of me and I worry if dcs are ok. I dread it when the call goes up she suddenly screams out and I have to run to her.

Today I heard her and my heart sank-I know its not her fault, she was probably scared but I didn't go up to her, I took dd1 dd2 and ds2 into the kitchen so they didn't hear and ten mins later I checked her to see she was ok and pretended I didn't hear.

Don't get me wrong, I love my sister but the baby gets scared or he cries then in her confused state it makes dsis jump and she gets more confused or she swears then dd2 copies and its horrible.

I feel so so bad for ignoring somebody who was screaming for help.

belfastbigmillie Fri 22-Mar-13 11:24:42

I am feeling quite upset at all these people on here who feel that children need to be 'protected' from seeing someone having a seizure. 1 in every 100 people in the UK have epilepsy. It is a fact of life. It's attitudes like this that lead to nearly 40% of people with epilepsy being on anti-depressants. Get over yourselves and just bloody well explain what it is to your children.

Thumbwitch Fri 22-Mar-13 11:28:06

So explain again why you needed to go to your sister when she screamed - because she wanted her hand held because she was scared, is that it? She was having an absence seizure, would have been confused as to where she was and just needed some familiarity?

I think you were not that unreasonable, actually, on balance. But your sister needs something else to help her - how many of these seizures does she have a day? Is there any other way of managing them? was she in any actual danger, or was it just the reassurance she needed? (And I'm not belittling her need for that, btw, just trying to ascertain if there's any other way to give her that, without actually having to hold her hand).

Thumbwitch Fri 22-Mar-13 11:30:15

belfast, I think you have taken that completely out of context - the OP said that her sister starts to swear a lot, which her younger DD then copies, and it upsets her older DD. She's also said that her baby DS cries because he's scared (he's a baby) and that further confuses her sister and exacerbates the condition.

It's hardly like she's trying to shield them from the fact their aunt has epilepsy.

Catsdontcare Fri 22-Mar-13 11:31:27

You definitely need outside help, you cannot be a carer to so many people with varying medical needs. Could you look into getting someone to help you with the children, like a mothers help or nanny?

OTTMummA Fri 22-Mar-13 11:33:19

Would a 3yr old understand why auntie is screaming and shouting?
I think even if things were explained this isn't a good way to deal with her condition is it?
I mean you aren't always going to be able to be there or help, something else needs to be put in place.

Eskino Fri 22-Mar-13 11:35:28

I feel so sorry for you having to choose the lesser of two evils (situations), I have no idea how I would've reacted and no idea of your childrens needs at that time so I won't judge and can't offer any advice, you just have my utmost sympathy. sad

Jenny70 Fri 22-Mar-13 11:35:44

I don't think YABU, you were caught between a rock and a hard place on that occasion.

But looking at the situation from the outside, not understanding the ins and outs of it all, it looks like the problem will recurr and that the current arrangement isn't going to work. It sounds like your childrens' medical needs are ongoing and sister's epilepsy is obviously not under control.

This will happen again, and to keep ignoring your sister is unreasonable. To ignore your children if they need sugar levels checked is also dangerous... so you need to make arrangements that will work.

And I am sorry I don't know what those arrangements are, I don't know what carer you can get, whether a video monitor of the children would be enough to know if they are OK, I don't know if neighbours can be called upon in an emergency.

I don't think you were unreasonable on that occasion, but it's a warning that this arrangement is going to come unstuck and you need to change it to be safer for all.

ariane5 Fri 22-Mar-13 11:36:46

My dcs have oftehave a 'big' seizure dd1 in particular not bothered by that at all in fact when she was little it was part of life and what she called 'aunty vibrating'

It is the swearing that's hard but its not as bad as the baby actually getting scared, screaming and making poor dsis more confused. She just needs somebody to hold onto/reassure her it lasts abt ten mins.

Yes dd2 insulin levemir as lantus made her have severe night hypos but now she's having them during day she just went down to 2.2 and was shaking confused and crying (she was 16.7 hour ago) its v v unpredictable and I'm struggling.

I don't want to do wrong by anybody but I can't deal with everybodys needs at same time.

ariane5 Fri 22-Mar-13 11:37:39

Rry-my dcs have often seen 'big' seizures it was meant to say

ariane5 Fri 22-Mar-13 11:38:06

Sorry not rry bloody phone

FabOeufsFromLaChocolateries Fri 22-Mar-13 11:40:18

I wish you hadn't posted this in AIBU because you clearly need some support and will get lots of harsh postings sad

Hopasholic Fri 22-Mar-13 11:40:55

I don't understand, I have epilepsy but not the type your sister has. Is she screaming & swearing because she's having a seizure or is the screaming part of the seizure?
Apart from the epilepsy, is she otherwise well & healthy or is the epilepsy due to another medical condition?

3littlefrogs Fri 22-Mar-13 11:42:55

YANBU op. Some people on here do not understand what it is like looking after one seriously ill disabled person, never mind 3 or 4 at the same time.

You need help though. Have you asked for SS assessment for all the family members who need care?

I totally understand where you are coming from. What happens if you are seeing to your sister, meanwhile the 3 year old has a hypo and your dd1 faints? you must be so stressed and exhausted with the worry. sad

BerthaTheBogCleaner Fri 22-Mar-13 11:44:39

So you were alone, looking after THREE people with serious medical conditions and an 11mo? What happens if dd1 faints, dsis has a seizure, and dd2 has a hypo all at once? Because that isn't that unlikely, is it?

It is not fair of your mum, and your sister's boyfriend, to expect you to do all this just because they are working. Do either of them look after all your children and your sister at once? Are they ok with that? Who do they prioritise?

I think we need outside help but I doubt the suggestion would go down well - why is it their choice? Time for you to cry loudly for help. Tell them you had to leave dsis alone. Tell them there will be another situation soon when you have to choose which family member to help because you can't get to all of them.

OTTMummA Fri 22-Mar-13 11:44:48

No you can't deal with everyone's needs at the same time, it isn't reasonable to be expected to either, so you should have a chat with your mum and sister and let them know something needs to change.

It isn't fair on your sister to be left, but it isn't fair to put your children at risk by not attending to them if you are with your sister and it isn't fair for you to be pulled in so many directions that you can not do either of them justice and then end up feeling guilty over it.

Tbh however harsh this sounds you have to put your children first.
It would be different if they didn't have demanding health needs but that isn't the case.
Im sure that your sister would feel awful if you missed a hypo whilst you were caring for her.
That has more severe repercussions than leaving your sister during a seizure.

doctorhamster Fri 22-Mar-13 11:47:34

You're not unreasonable op, you have too much on your plate and are clearly struggling with it.

Do you get carers allowance for your dsis? If she needs someone to be with her all the time then she needs to pay someone to do some of it so that you can have a break.

Regarding the diabetes, it sounds like you need to go back to your diabetes nurse for help. Do you know about insulin pumps?

doctorhamster Fri 22-Mar-13 11:49:25

And to all those saying the op should have left the children for ten minutes...a blood sugar reading of 2.2 needs to be treated immediately. 10 minutes would be a dangerous delay.

ariane5 Fri 22-Mar-13 11:51:32

Yes it is true that my help enables my mum and dsis bf to continue working but the help they give me enables my dh to work so I can't complain too much. Usually I am ok, it is extremely difficult but I do manage (just) it it for some reason a bad week with dsis quite unwell and also dcs and I can't manage.

Dsis has 2 types of seizure-tonic-clonic and absence, absence ones quite frequent and horrible for dsis to experience as she gets terrified.

TallGiraffe Fri 22-Mar-13 11:52:33

As you say more about this situation, I think it may actually have been a good thing that this happened today. You cannot be responsible for this number of people with unstable medical conditions all at the same time. Time to acknowledge that you all need some help.

Apart from anything else, you will get worn down and sick and then be no use to anyone.

ariane5 Fri 22-Mar-13 11:54:43

Dds DSN has been off sick all week, I just phoned as her hypos are daily and harder to treat, she had a 200ml juice and mini pack of jelly babies which barely worked she seems to need a huge amount of sugar to get her back up, I currently have dd1 IN the playpen with ds2, dd2 lying down and dsis up in bed I've been checking her every 10 mins she's fast asleep.

TallGiraffe Fri 22-Mar-13 11:55:19

doctorhamster I was one of those people that said to leave the children, but before the OP said about the blood sugar being so low.

GetOeuf Fri 22-Mar-13 11:57:02

Good lord. I don't know how you bloody cope.

That must have been a very difficult decision to make. Everything sounds so incredibly hard for you.

I have no useful advice other than to try and seek outside help - it is very hard for all this to come on your shoulders. You have my sympathy.

Thumbwitch Fri 22-Mar-13 11:58:06

IS there anything else that would help your sister when she gets terrified? I don't honestly know, but I'm thinking about something else she could grab rather than you, that would "ground" her and make her feel safer - or do you have to talk her through the absence seizure?

Are her meds properly controlled?

All in all it sounds like you have far too much on your plate - as a previous poster has already said, what if everyone has a serious problem all at once - you can't deal with 3 of them at the same time! - so you need some external help, somehow.

Plumsofgold Fri 22-Mar-13 12:00:11

OP please ignore the posters who have said you are being unreasonable, I see our post as a cry for help, please get some!

ariane5 Fri 22-Mar-13 12:02:58

She just calls for me or our mum and gets louder till somebody holds onto her, reassures her and it starts to go. She gets completely confused and terrified, swears, can smell things that are not real and goes rigid/cant swallow and does a awful noise in her throat it is not far off a big seizure I think her meds stop it going that far?

I want to help so everybody can remain working but its so hard a while ago I wanted dh to give up work because of our dcs but we decided to keep trying as he wanted to work.

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