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.

SneakyNinja Fri 22-Mar-13 10:36:57

Yeah so would I hmm

How old are DCs?

ariane5 Fri 22-Mar-13 10:38:54

Dd1 is 11 off school ill today, dd2 3 and ds2 is 11 months.

You shouldn't have been there 'helping' if you weren't in a position to help. Your Mum would have undoubtedly prefered to leave work than have her daughter suffering like that alone.

You should probably have a rethink of the situation, its obviously not working for you and you can't leave your sister like that again, is there anyone else around that could either be there with your sister or look after your children in future?

i can't believe you ignored her.

yes, seizures are horrible to witness- but they're even worse to suffer.

badtime Fri 22-Mar-13 10:46:25

YABU.

If could your 11 y.o. not have been trusted to watch the others for a moment or two while you went to help another human who was suffering?

badtime Fri 22-Mar-13 10:47:00

Where did that if come from?

NatashaBee Fri 22-Mar-13 10:47:55

You say yourself that your sister helps you a lot when she's well - I think you owe her the same help.

ariane5 Fri 22-Mar-13 10:48:36

I need to be here during the day as dcs have got so many health issues I can't even manage school run etc and need to be near their school during day as they are frequently ill so need a 'base' nearby which is my mums house.

I have never not gone to her before, I checked her after I just couldn't leave dd1 as she faints a lot or dd2 as she has hypos and the baby either screams in the playpen or screms if I take him up with me as it scares him.

My mum needs to work so she can't keep leaving work and my dh needs to work so its sort of a mutual agreement we all help each other but today it was too difficult.

MrsWolowitz Fri 22-Mar-13 10:50:20

YABU.

Learn from your mistake though and don't leave her alone again sad

SneakyNinja Fri 22-Mar-13 10:50:34

This actually makes me really uncomfortable. Your poor Sister!
Could you not have seen to her after you made sure DCs were safe in kitchen? At 11 your eldest should be able to watch the others for ten mins?

The 11 year old could have taken the younger ones into another room though.

Personally, I think dont go there if you are not prepared to help.

Why are you there, for your sister to help you? But you cant help her when she needs it because its "upsetting"

ariane5 Fri 22-Mar-13 10:52:09

Dd1 cannot look after dcs as she faints a lot (has eds and pots) it was just too much for me looking after dcs who all have disabilities and my sister being ill. I couldn't have watched dcs, held the baby and helped her too, ds2 would have cried again that makes dsis more confused.

I checked her straight after, I havnt left the house I am trying my best. My sister has a boyfriend but he works too so can't be here to help.

RunningAgain Fri 22-Mar-13 10:52:19

You're obviously under a lot of stress, and it's a really difficult situation. You can't be all things to all people. Won't your sister understand if you explain to her?

TallGiraffe Fri 22-Mar-13 10:52:38

For 10 minutes your children would be fine on their own. Get a playpen so you can put the baby somewhere safe if you don't want you don't trust the older child.

Divided loyalties are hard, but on these occasions your sister's needs are more urgent and acute than your children's.

SneakyNinja Fri 22-Mar-13 10:52:57

x posted there, but still a system needs to be put in place so you don't have to leave her.

BeaWheesht Fri 22-Mar-13 10:53:45

Yabu . Very.

You are incredibly fortunate that you have so much help. Try and be grateful and show that to the people who help.

TallGiraffe Fri 22-Mar-13 10:54:18

X-post you have good reasons for not having he older hold looking after the younger, but a playpen would still work.

SneakyNinja Fri 22-Mar-13 10:54:41

Does your sister need a carer op? Might be worth looking into if this happens frequently.

ariane5 Fri 22-Mar-13 10:55:00

Dd1 cannot look after other dcs.

I am here to be near dcs school in case dd1 or ds1 ill (they dislocate joints a lot and frequently need to go to hosp).

How am I meant to prioritise dsis over 3 children, dd2 keeps having hypos I had to weigh up do I leave an adult alone then check ger after or leave 3 dcs alone I didn't know what to do.

BeaWheesht Fri 22-Mar-13 10:56:29

Why couldn't littlest go in a playpen? Other 2 could come upstairs? I know its horrible if the baby cries but I don't see another option.

How often does your eldest faint? Sorry I don't know what eds and pots are.

The 3 year old - does he/she have hypos often?

BarredfromhavingStella Fri 22-Mar-13 10:57:44

How awful for your sister, please don't ever let her find out what you did sad

So you are there for your convenience not really to help your sister? Does your being there mean that your sister isn't able to get a carer? Have you contacted SS at all?

ariane5 Fri 22-Mar-13 10:58:29

No she does not have a carer.

Please don't think I was being intentionally cruel.dd2 needed a blood sugar check, the baby was screaming dd1 keeps getting faint/dizzy I couldn't leave them. I checked her as soon as I could I have never not gone to her before.

I am trying my best.

megandraper Fri 22-Mar-13 10:58:41

What a difficult situation. I think you know you can't let it happen again though. You need to sit down with your sister and mother and talk it all through, and agree a plan between you.

what exactly is so wrong with your 11yo that she cant be trusted to keep an eye on the other two for 10 minutes while you see to your sister?

Shesparkles Fri 22-Mar-13 10:59:41

I honestly think you all sound like you need some outside help. The situation for you and your children sounds very difficult due to their own health needs, and your sister's situation sounds very difficult too. I'm all for family helping each other, my family has had situations over the years where we've all had to lean heavily on each other due to health situations, but there comes a point where you have to accept that you might need more than you can give each other.

I think with today's situation, no matter what you had done, you'd feel you weren't doing the best for one of those in the house-how can anyone castigate you for the way you dealt with what must have been an extremely stressful situation. Go easy on yourself x

Yabu. I couldn't have left her. I would have taken dcs up with me considering the diabetes and explained to them why their aunt was screaming and swearing. Teaching children compassion to others who are sick and understanding rather than coldly ignoring someone crying for help. Bad form.

OTTMummA Fri 22-Mar-13 11:00:36

YABU, but I understand that sometimes under stress we don't make the right choices, so I think you should go easy on yourself and count this as a one off mistake ok.

Tbh it sounds too much for one person to handle.
How long do you think this arrangement is going to last, how long has it been going on for?
I think it may be time for you to seek outside help, someone will end up getting hurt or you will end up having a breakdown.
In the meantime is there any way you can create a 'safe' room for your children when you need to help your sister?

dopeysheep Fri 22-Mar-13 11:03:01

You sound as if you are pulled in lots of different directions and you can't be alk things to all people. I'm sure you care very much for your sister or you wouldn't have posted.
Can she get a carer?
A 3 y.o diabetic myst be such a worry esp newly diagnosed. If she is having a lot of hypos maybe have a chat to your diabetic nurse re adjusting her insulin?
I find raisins and Lucozade invaluable for quick hypo treatment, Lucozade in particular just be careful not to give too much it's easy to do!
Good luck with it all.

ariane5 Fri 22-Mar-13 11:03:25

Eds us a genetic cond all 4 dcs get pain fatigue and dislocations, dd1 has pots which causes frequent dizziness/faints.

Dd2 diagnosed T1 in dec she keeps having hypos since her background insulin was reintroduced.

I suppose I am here for my convenience but today was the first time I have been unable to help dsis, I couyldnt take dd1 and dd2 up with me the screaming and swearing is too much for them dd2 gets worried then copies the words.ds2 does have a playpen but he cries so loud it upsets my sister as she is disorientated and doesn't know what noise is.

My mum will get in trouble if she keeps leaving work and on occasion dsis has been v ill and I've phoned her dsis gets cross with me that our mum left work. Her boyfriend works ten mins away but she doesn't want him missing work either.

WynkenBlynkenandNod Fri 22-Mar-13 11:03:31

I agree you need outside help . What you'rereally saying is you can no longer cope with the current situation and that is OK to say. It's better to admit it then keep it all in and crack up in a total crisis. Do you have an understanding GP in th practice to talk to?

defineme Fri 22-Mar-13 11:03:32

Tbh I think those people judging you are being dramatic: she's fine now, it was a one off, she's an adult and she'll get over it/doesn't even realise she was ignored. Is your sister allowed to be left alone? If not are your mum and you doing shifts?
You need help. You are in an impossible situation. Your sister needs help too by the sound of it. You can't care for 4 people at once-what if the 2 diabetics both have a hypo at once and the other kids dislocate something??
Have you asked for help/carers: I have no idea what's out there, but |I have a friend with a disabled child who has carers come most days.

StanleyLambchop Fri 22-Mar-13 11:04:13

Are you the same OP whose mother was planning to leave her house to your Dsis and basically disinherit you and your DBro? Wasn't your sister planning to have a family and wanted to bring them up in the house, so was refusing to leave? Or am I confusing you with someone else?

Either way, I believe YANBU. You have to put your own DC first, however hard that sounds. Your Dsis is an adult, and needs to sort out her own care requirements. I say that as a mother of a child with epilepsy, I would not expect my other child to look after her sister, not now or once they are adults.

belfastbigmillie Fri 22-Mar-13 11:06:14

You can get some good books about epilepsy for kids (check out the epilepsy action website). They need to understand that their aunt has a medical condition (which I am sure your DD can relate to). How would you feel if someone walked away from your DD because they found her behaviour (eg low blood sugar odd behaviour) disturbing? I have a sister with diabetes and a son with epilepsy and I find your attitude really depressing.

Can I just ask what is the point of you going over there for to help if you are actually going to ignore her when she really needs you??

I understand it must be awful to witness such a thing but really....you ignored her?? Your poor sister. You admit she helps you a lot when she is well - for you to just ignore her when you know she wants you to be there for her holding her hand is well, very U to pit it nicely.

If you want to put your DC first then don't go over there on the pretext of helping out.

Blimey, I think other posters here are being astonishingly harsh towards you ariane. It sounds like you are being pulled in at least 4 directions at once and it must be very hard for you.

I don't know anything about any of the medical conditions you speak of, but it seems to me that your sister is the oldest of all the people dependent on you and therefore I can understand why she might be the one who could reasonably be left to go through her crisis alone for 5 minutes. It doesn't sound like a nice thing to do, but you have made it clear that you would be by her side if you could be.

It does sound like you could do with some help though. A playpen for the baby is a good idea. It sounds like the 3 yo's condition is not being controlled very well. Is that because you are in the early stages of managing her diabetes? And as for the 11yo, if she is ill, of course she cannot care for 2 little ones. It sounds like today is extra stressful for you.

Out of interest, what happens to your sister if you have to go to hospital with one of your children?

ariane5 Fri 22-Mar-13 11:11:20

Yes my dsis will be left the house one day due to her illness and greater need.

I have been coming here for last few months every weekday, it helps me and allows my mum to work, if dsis is ok and I need to go out she often comes with me, on bad days I help her, on tues she had a horrendous day and all day I was up+down to her and it was difficult I hate to see her so confused and scared and it is extremely difficult to explain to dd2 not to swear as well.

I think we need outside help but I doubt the suggestion would go down well I am trying to do all I can to help, I had a lapse today, the baby was up all night I was tired, dd1 keeps keeling over and I'm constantly having to check dd2.

Nobody could make me feel worse than I do I just don't know how to help everybody at the same time

agnesf Fri 22-Mar-13 11:11:32

Ariane5 - you sound as if you are doing your best in a really really difficult situation and I'm sure you felt awful about the situation that you found yourself in with your sister and your DCs.

Making the choice between the safety of your DCs and that of your sister and is done in a split second so is easy to then worry about whether you made the right choice afterwards.

Don't feel bad. You are doing your best.

maybe it would help to talk it over with your sister and your mum - surely they will understand what an impossible situation you were put in today and maybe together you could come up with some more manageable ways to cope if this happens again.

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

What would your sister do if you or anyone else wasn't there?

ariane5 Fri 22-Mar-13 11:14:35

Usually if dcs need hosp treatment dh has to leave work and take them/stay in with them.if he can't then my mum has no choice but to leave work and look after dsis.

At weekends dsis usually with her bf so he looks after her then if she's ill.

OTTMummA Fri 22-Mar-13 11:15:17

How old is your sister?
I agree some posters are being very harsh, please go easy on yourself op.

Catchingmockingbirds Fri 22-Mar-13 11:15:41

Eds - ehlers danlos syndrome
Pots - Postural orthostatic tachycardia syndrome

I think you are clearly under a lot of stress OP, yes your youngest could have been in a playpen, you could have taken dd2 upstairs, left dd1 sitting down but keeping an eye on the others, etc etc, but it's hard to think rationally when under so much pressure. You should explain to your sister that you heard her but couldn't go upstairs to her as you were over stretched with the kids and understandably weren't thinking straight. You both need to work out a strategy that works, maybe exploring the SS route for extra help for dsis?

agnesf Fri 22-Mar-13 11:19:02

I also agree that some posters are being too harsh. Please ignore them. You are in a really difficult situation and sound as if you need someone outside of this to help you.

I don't know who is best to suggest but hopefully someone will come along with a better suggestion than me.

ariane5 Fri 22-Mar-13 11:19:17

It has happened before that I've thought she was ok, checked her and left her in bed to take dd2 to pre school (I have to stay with dd due to diabetes untill preschool will have her there without me) and I've had a panicky phone call and had to run the 5 mins back to my mums house to help her.

I don't go out much during day if I do its pre school/shops 5 mins away or school 10 mins away and always have my phone on loud in case she's ill.

Earlier in week she was unwell and after needed to go out to see her bf so my dh gave her a lift as he was taking ds1 to a hosp appt as we were too worried to let her get the bus alone.

I love my sister I do not want to cause her any more upset but I didn't know what to do.

ariane5 Fri 22-Mar-13 11:20:12

Dsis is 25.

lljkk Fri 22-Mar-13 11:20:26

Crikey you have tonnes on your plate, OP.
I think I would try some of the suggestions here if at all possible.
But I don't blame you for having a moment when you felt you couldn't cope.

willyoulistentome Fri 22-Mar-13 11:20:51

I don't think you were unreasonable. It is a very difficult situation for everyone by the sound of it, and you made a judgement call. Normally your 11yo is at school right, so can't normally look after the little ones if your sister has a seizure. And the smaller two get upset by your sisters seizures. Mine would too. My sons friend's Mum had a seizure while we were at an amusement park - my two were very scared and they are much older then yours. I dont think you should leave them alone to go and see to your sister - they are very little to be left alone for an undefined period - even if it is very short - what if the seizure went on for a long time. Does your sister never get left alone then? What happens if she is out and about and it happens.

It's lovely of her to help you so much, but you should not have to choose between your childrens welfare and your sisters.

You all need to come up with an alternative arrangement.

dopeysheep Fri 22-Mar-13 11:21:42

Veering off topic sorry but is your dd's background insulin Levermir? I have this and it can be quite efficient do def think about notching her levels down a couple of units if she's having lots of hypos? Have you got a good diabetic nurse you could call?
Those small cartons of fruit juice are great for hypos too.
I hope you can find some help OP.

ariane5 Fri 22-Mar-13 11:24:22

When she is well/having a good day she is really helpful, sits and reads with dcs, plays with them-they love her. She is so kind to them and has been a lot of support for me when I am struggling with dd2 hypos which are very hard to deal with.

I wouldn't have left her if I had a choice I didn't know how to manage with all of them sad

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

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.

littlewhitebag Fri 22-Mar-13 12:04:25

What a terrible situation for you OP. You really need to think about getting some support. Maybe talk to your HV or GP? They will know what is available in your area and make referrals.

dopeysheep Fri 22-Mar-13 12:05:20

Gosh I would def notch her insulin down a bit. Hypos feel horrible and daily is too much. Also they make sugars yo yo because here is often a spike after a hypo. Personally I would rather run a bit too high but steady rather than have lots of hypos. Especially at the start when you are jyst getting to grips with everything.

dopeysheep Fri 22-Mar-13 12:06:09

Diabetes U.K has a good forum for advice?

ariane5 - have I talked to you about you DDs POTS? I think I may have done? If not, PM me as DD2 is gradually getting hers under control (or at least noticing the triggers a bit more).

ariane5 Fri 22-Mar-13 12:12:31

Thanks dopeysheep I will have a look. Def need to change something dd2 high sugars 2 hrs after brek but within an hour (even with a snack) it plummets. I'm at my wits end she was shaking and getting angry today refusing the juice as she felt so bad. Its one of those days sad

ariane5 Fri 22-Mar-13 12:14:26

I can't rem if have spoken to you (so busy I forget everything!). Will pm later as can't do it on phone for some reason??

We were told more fluid and salt on food but so far its no better.

dopeysheep Fri 22-Mar-13 12:25:29

Hmmm - maybe split her brekkie into two smaller meals, try and spread out the food a bit?
Maybe give a snack a couple of hours after breakfast before the hypo strikes?
I know you can meters that constantly monitor sugars and give an indication of whether sugars are rising or falling but not sure if they are suitable for small children or if you can get them on the NHS?
But I would def go down the little and often route to try and avoid hypos. Bananas are good I find, I love them cut up in Greek yoghurt with a bit of honey, mmmm. Or crackers or a digestive biscuit?

OHforDUCKScake Fri 22-Mar-13 12:27:42

YANBU, you were stuck between a rock and a hard place. No way would I leave a 3yo and 11 month old down stairs alone, whether an ill 11 yo be with them or not.

Especially if they are crying and scared of the noises.

However, it would BU to continue to do it. Something has to change.

Samvet Fri 22-Mar-13 12:33:23

Op your sisters epilepsy seems very poorly controlled, presumably she is disabled by this and can't work, wouldn't she qualify for some type of help / care? Are her neurologists happy with how much she is fitting?

ariane5 Fri 22-Mar-13 12:52:34

Yes dsis cannot work. My mum came back for her lunch hour, checked dsis who was unwell begged her not to leave her so my mum asked dd1 to sit and hold dsis hand for a bit (she is quiet just confused and tearful) so she could get back to work.

My mum is working late and as I will be unable to leave dsis to pick ds1 up my mum will collect him and bring him home later with her as she works at same school, so in a way we do all help each other but its not easy.

I wish there was other help for dsis but no idea what's available and also she has problems accepting her condition and would not want a 'stranger' caring for her she either wants me our mum or her bf.

Floggingmolly Fri 22-Mar-13 12:59:17

You went there to be available to help, yet refused to help when it was actually needed because it would upset your children? hmm
Have you omitted a paragraph, by any chance, because it makes no sense?
Oh, and do let your mum know what your "help" consists of, so she can make other arrangements.

FabOeufsFromLaChocolateries Fri 22-Mar-13 13:04:17

hmm at FloggingOP

StanleyLambchop Fri 22-Mar-13 13:05:07

I wish there was other help for dsis but no idea what's available and also she has problems accepting her condition and would not want a 'stranger' caring for her she either wants me our mum or her bf.

I am sorry but she is being unreasonable about this. You cannot provide that care and get on with your own lives/jobs/family, then she will have to accept something else. You have children with medical problems too- her 'wants' do not trump their needs. If getting outside help is a better solution for all of you, then she will have to accept it. She is an adult, after all.

ariane5 Fri 22-Mar-13 13:09:07

I went there to help, which I have done EVERY single time up untill this morning when dcs needed me too and I couldn't help everybody.

If I could have helped I would have-I am still here now checking on her all the time and it wasn't a case of not wanting dcs just upset there are other factors too if you read the whole thread.

3littlefrogs Fri 22-Mar-13 13:13:23

OP please ignore floggingmolly; she has obviously not read the thread.

I think you should ask to get this thread moved from AIBU. You need wise and informed advice and help, not unhelpful criticism.

You desperatley need professional help and your family memebers all need to recognise that.

JeeanieYuss Fri 22-Mar-13 13:15:48

Sorry, but it sounds like excuses why you left you left your sister on her own.

YABU. Your poor sister..

3littlefrogs Fri 22-Mar-13 13:19:17

I can't believe the level of ignorance of some posters regarding the risks attached to severe hypoglycaemia in a diabetic 3 year old. sad

FabOeufsFromLaChocolateries Fri 22-Mar-13 13:20:43

Or the level of ignorance about not being a bastard to an OP who is struggling

ariane5 Fri 22-Mar-13 13:23:15

I just couldn't do it today- dd2 was due her blood sugar check , the baby was crying and I know that makes dsis worse when ill and dd1 not well, I didn't leave the house I just couldn't go up and sit with her AND look after dcs it just seemed that things went wrong for everybody at same time so I took dcs to kitchen checked dd2 before going to check dsis.

It wasn't 'just an excuse' I am here every day and have managed to help her every other time.

3littlefrogs Fri 22-Mar-13 13:23:48

Indeed. OP please get this moved to somewhere like special needs/disabilities where you will get more understanding and support.

I think you just have to report your own post and MNHQ will move it.

You really don't need people making you feel worse.

It is horrible trying to care for too many people and not being able to do it properly.

OTTMummA Fri 22-Mar-13 13:27:50

You can not do this anymore op, god forbid if something happened to your 3yr old if she hypo'd whilst you were stuck with your sister.

From the looks of things you have more responsibilities than your mum and sisters boyfriend, you have to find out what other help you can get, even if it's for respite. Your sister is being v unreasonable to expect you to neglect your children for her, or are your children's illnesses not as important to anyone else?

ariane5 Fri 22-Mar-13 13:27:52

I feel so bad I just don't know anymore how to manage or to cope. I have posted before about things but it just gets worse.every time things look like they are improving something else goes wrong.

I do not have enough time or energy or the capability to help everybody. I am utterly exhausted and now feel like a total bitch for leaving my sister alone but I had to make an instant decision who to help.

StaticSockMonster Fri 22-Mar-13 13:30:40

YABU yes.
I have read the entire post.
If you cannot cope, then don't say you can help.
I agree that children come first but if you are there for your sister as well - and you cannot be available when she needs you - do not offer your help.

If your 11 year old is off school because she is poorly, why is she expected to sit and comfort your sister when she should be being looked after or curled up with a blanket.
Why didn't you tell your mum when she was home that you could not cope? Why did you let her walk away again? Why did you allow her to make your daughter sit with her?
If your daughter can't care for your other DC while you are upstairs, why can she be left caring for someone who could possibly lash out and hurt her?

This has made me quite cross really. You left your sister helpless, shouting etc in pain? You didn't just leave her - you ignored her. You ignored her cries for help.
She could have died - could you live with yourself if that happened while she was in your care? I suspect not.
Get some help.
Don't pretend you can help when you clearly are not able to juggle so many things.

OTTMummA Fri 22-Mar-13 13:31:21

If she is this disabled is she claiming DLA?
If she is then she could use it for care she needs, is she ever left alone? If so how does she cope?

FabOeufsFromLaChocolateries Fri 22-Mar-13 13:31:29

You should contact social work for an assessment.

ariane5 Fri 22-Mar-13 13:32:36

I don't think dsis wants my dcs to be put at risk because of her, she adores them but I don't think she rtealises how hard it is to care for them and her.

Sometimes I wish her bf would do more, if he phones her and she's ill or doesn't answer he will text me to check her/rake her medicine etc and I sometimes wish he would actually just come and help but I know he has to work.

My mum and sister do help me too, for which I am grateful, but I seem to be unlucky and end up alone on the bad days.

Dcs are all quiet now and dsis asleep so its a bit more peaceful here. I always feel on 'red alert' though its so stressful

3littlefrogs Fri 22-Mar-13 13:33:01

op you are not a total bitch. You are a good person in an impossible situation.

You are overloaded, and it isn't fair.

InSearchOfPerfection Fri 22-Mar-13 13:34:00

EXCUSES ?!?!?

A 3 years old with unstable diabetes, an 11 yo who faints (so can not be left in charge of a 3yo and a 7 months old) and a 7 months are just excuses???

I am sorry but some people really need to check up on what that sort of illnesses means and how dangerous they can be.
Low sugar levels can KILL.
A person who faints whilst in care of very young children can lead to a disaster.

And all these were just inconveniences that should have never stopped the OP to go and see her dsis. hmmhmm confused

OP I have no idea what to suggest but I can tell you that you have done your best in very difficult circumstances. Don't take anyone who tells you you are the worst person ever to get to you because they clearly don't have a clue.

Have a word with your dsis and tell her about your issue. Explains you really want to be with her but can't leave your dcs because xxx. Ask her what she thinks could be done to help. Ask her what she thinks should be done if your dd has an hypo, dsis has a seizure. Or if dsis has a seizure but your 11yo has also fainted.
You need some backup plans and a better idea of what is expected from you because as it is it's just not workable.

3littlefrogs Fri 22-Mar-13 13:34:28

staticsockmonster - the three year old could have died.

ElliesWellies Fri 22-Mar-13 13:34:37

I'm surprised at the lack of compassion here by many posters. I have read posts by this lady before and she has faced and is facing a lot of difficulties.

OP, you clearly have far too much on your plate. You have done your best in a terribly difficult situation. It's now time to try to investigate additional support for your sister in particular. But you don't deserve to be flamed.

ariane5 Fri 22-Mar-13 13:38:18

My mum desp needs to keep her job. I told her what happened and she just said she was going back but would collect my ds1 for me so I didn't have to leave the house.

I was bf ds2 when she left that's why she asked dd1 to sit with dsis untill I'd finished as dsis had been begging my mum to stay at home. Dsis v v rarely left on her own .yes gets dla but as I mentioned before she only wants us helping as she is embarassed and depressed by her illness it is terribly sad and she can't accept it.

StaticSockMonster Fri 22-Mar-13 13:39:01

3littlefrogs - yes and I said children should come first.
And her sister could also have died.
If OP cannot cope she needs to get help.
Do not shoot me down for having an opinion.
If OP didn't want people's opinion she's wouldn't or shouldn't have asked.

InSearchOfPerfection Fri 22-Mar-13 13:39:31

StaticSockMonster
perhaps the OP has been doing all she could to help her dsis and still look after 4 dcs with complex medical needs.
Perhaps the OP is living in such a stressful situation day in day out that she doesn't have time to think logically about can and can't be done.
perhaps the expectations from her mum/dsis/DH/dsis bf are too high but non in the family wants to acknowledge them so the OP is left in the position whwre she has to do it because otherwise her dsis would be alone, completely alone (which isn't the case atm).
perhaps the OP is actually completely drained and lost and is asking to help and support to be able to ensure that her dsis gets the support she needs *(and she knows she can't give her).

A bit of compassion can go a long way and there is none in your post, not one bit of compassion at all.

Actually your post made me very very angry on behalf of the OP who is clearly doing the best she can. angryangry

InSearchOfPerfection Fri 22-Mar-13 13:41:22

xpost.

I am very happy to shoot you down the same way you shoot the OP.

If you want to give an opinion or propose solutions, do so. But you don't have to be so harsh on the OP and then grumble when someone is being slightly harsh on yourself

drjohnsonscat Fri 22-Mar-13 13:42:48

only read the OP but I feel for you. It sounds like you have a huge amount on your plate.

ariane5 Fri 22-Mar-13 13:45:41

I posted as I have NOBODY in rl to speak to. Iam either stuck in or at hosp for dcs.

Even things like leaving ds2 in a playpen worry me-we use soft travel cot as p pen but if he falls awkwardly he dislocates, there are so many factors I do not know where to start. I don't know what I'm doing every day passes in a whirlwind of blood sugar checks,hypos,dislocations,appts,running up+down to my sister etc.

I do get invaluable help from my mum when she's here after work but the daytime hours are so so difficult.I want to help everybody but today it was too much altogether.

StaticSockMonster Fri 22-Mar-13 13:49:55

The OP asked a question, I gave my opinion.
I'm sorry that my post has made you angry but there is nothing in there that is untrue.
OP is unrealistically expected to care for four people.

I was "grumbling" for someone being harsh. I'm a big girl I can take it.

OP may I suggest that while it is relatively calm you search the Internet for what help is out there. There are lots of avenues to explore.

StaticSockMonster Fri 22-Mar-13 13:50:40

The OP asked a question, I gave my opinion.
I'm sorry that my post has made you angry but there is nothing in there that is untrue.
OP is unrealistically expected to care for four people.

I was "grumbling" for someone being harsh. I'm a big girl I can take it.

OP may I suggest that while it is relatively calm you search the Internet for what help is out there. There are lots of avenues to explore.

StaticSockMonster Fri 22-Mar-13 13:51:24

Wasn't grumbling. Damn you predictive text!

InSearchOfPerfection Fri 22-Mar-13 13:53:45

ariane you need a family meeting on that.
With your mum, dsis, her bf and your DH.
So you can do an proper evaluation of what is going on and how dangerous it is for your dsis and your dcs.

I am sure that no one in your family wants to put anyone in danger. Nor that some people are having it easy on the back of others.
You are just a family with very complex medical needs and you will need some help as a family. Especially as you seem to be good at working as team and supporting each other to get the best out of a difficult situation.
Maybe some help your yourself and the dcs.
Maybe one of you (your mum?) to stop working.
Maybe your dsis needs to accept a carer, even if part time to start with.
It is just impossible to prioritize the essential needs of so many people, when there is just one person physically present.
And asking your 11yo to be carer (by holding your dsis hand, by asking to look after seriously ill 3 yo etc...) isn't good either. Too much responsibility for an 11yo.

You will need some outside agencies involved.

You do for the sake of your dsis, your dcs and yourself.

Have you told your sister how hard you are finding it?

You can't do this anymore, something will have to give, it will either be something serious with either your children or sisters medical conditions or your mental health, then you won't be able to look after anyone.

Please at least call SS and discuss what options there are.

StanleyLambchop Fri 22-Mar-13 13:54:22

Op I remember your previous post about your sister. Did she not throw you out of your Mum's house once, and your Mum just stood by and let her? I am sorry but you must be such a lovely person to still try to help your Dsis despite the way she has treated you in the past, especially as you have dcs with health problems of their own.

I think your Mum & DSis have no right to expect you to prioritise helping them over your DC. Any help you can offer should be a bonus, not an entitlement.

ariane5 Fri 22-Mar-13 13:57:15

Have just had to leave dcs downstairs and help dsis she was SCREAMING for help poor dd1 had ds2 thrown at her at both of them sat in playpen, dd2 is ok playing with her toys luckily.

Dsis had my hand in vice like grip for about 3 mins whilst screaming now she is asleep again I've shut her door so dcs don't disturb her and I will go back to 10 min checks.
I know its not about me but I'm exhausted, both dd2 and ds2 need nappy changes and there's not an ounce of strength left in me.

I've sent poor dd1 up to the spare room to lie down I don't want her to feel like I do having to keep helping I said she needs to lie down and read a book and ignore any shouting/crying I will deal with everything.

Wishiwasanheiress Fri 22-Mar-13 13:57:46

Stop a sec, some days are just bloody hard. I think some people are reading the words but not hearing u. You do this all the time. This one time u couldn't. U just reached a point. I've been there with colic. Not exactly comparable but I understand the pain of just not being able to do it one more time.

U may never need to do that again. Don't feel too bad. Ur human, not perfect. By all means put other systems in place and other suggestions but please don't put extra stress on yourself.

Today was not great, but I won't flame u. I'd rather send u a hug. Good luck tomorrow. Tis another day !

InSearchOfPerfection Fri 22-Mar-13 13:58:38

Static your next posts are much calmer and reasonable.
And you do have a point re getting some help.

But I will repeat. There was no need to be so harsh on the OP. There was no need to play the guilt trip (How would you feel if your dsis had died when you ignore her?).

At the place of the OP, I would have felt so so bad reading your post.
And most importantly, it would have meant I wouldn't have heard your message either.

I know these are just words on screen but thinking of the person behind can be nice too.

ariane5 Fri 22-Mar-13 13:59:53

Yes in 2008 we had an argument and she threw me out. My mum said it was her illness affecting her and she didn't mean it.
I've just had to forget it and move on, I was v v v hurt and unwell for a long time it was awful.

mooglet Fri 22-Mar-13 14:00:27

I'm not a neurologist, but I am a doctor, and your sister's epilepsy sounds a bit odd to me. Presumably she is under the care of a neurologist, and so I think she needs to get her next appointment with them brought forward. Absence seizures are much more common in childhood, and pain / screaming / swearing are not at all how they usually present. Maybe something else is going on.

And I think you did the right thing in looking after your DCs too. You are in a very tough situation.

StanleyLambchop Fri 22-Mar-13 14:04:12

I've just had to forget it and move on, I was v v v hurt and unwell for a long time it was awful.

And who was looking out for you when you were in need of help? Second Mooglets post, Dsis needs to see her neurologist again. This should not come down to you to sort out.

StaticSockMonster Fri 22-Mar-13 14:07:35

I didn't mean it to sound harsh but that is the risk when things are written.
My tone would have been more soothing in reality. Honestly!

I have lost my sister and I question myself every day if there was something I could have done or something I missed - but there wasn't. My sister had no health problems like OPs has.
If this was to happen to OP it might push her over the edge and she has DC to care for.

OP I do apologise if I sounded harsh to you, it was not my intention. I so desperately want you to seek help that I came across and uncaring. In reality I was trying to advise what else could have happened.
The current situation is not healthy for anyone involved.

Inertia Fri 22-Mar-13 14:09:17

Oh Ariane- this is too much for one person to cope with. You're not just doing childcare while looking after your ill sister- you are looking after 4 people with serious - some potentially life-threatening- medical conditions, three of whom are children.

It's too much for one person to manage.

If your sister is entitled to have help from a carer, then that's something you absolutely have to consider. You can't do all this alone.

ariane5 Fri 22-Mar-13 14:10:11

Sometimes she stares blankly other times has 'proper' big fits but the most common are the ones where suddenly she screams, doesn't know who/where she is, swears, swallows v loudly its awful.

She sees a neurologist every few months.I do worry about her it is horrible to see and even worse for her to go through and she is so unhappy the rest of the time she can't accept it.

If I told her how hard I am finding it itd upset her even more I'm sure of it. I would probably be better speaking to my mum but I doubt she would stop working.

WynkenBlynkenandNod Fri 22-Mar-13 14:10:13

Ariane, please ring your GP and make an appointment or ring SS saying that you are unable to cope any longer and need help. If you don't want to ring they will respond to an email. I did this back in December (email SS )for my Mum and help did kick in quite quickly. One mother with Dementia is more than enough for me, goodness knows how you have coped with so much for so long.

parachutesarefab Fri 22-Mar-13 14:42:54

I agree with other posters - you need some practical help. Please phone social services, and see what might be available. (You may need to keep asking, keep pushing, as cost-cutting is everywhere at the moment, but there must be some help available to you.)

If your sister is entitled to a carer, maybe you could agree that you'll still be the one to look after her when she fits - the carer could then keep an eye on your children - not necessarily do anything (if that isn't their role), but be there to call on you if there's a problem?

Do you get any respite?

My Mil is very involved in her church, and is often helping look after children / give people lifts to appointments / sit with ill adult so that their carer can have a break. Even if you aren't a churchgoer (and I'm writing as an athiest) you could go and ask if they could recommend any groups or charities that may be able to help you?

Support groups for people with (or caring for people with) your sister's condition, or those of your DCs could give you:
- people to talk to, who understand
- practical advice, including what help you might be entitled to
- practical help (my experience is children with a range of disabilities - often parents who met each other through support groups were the best babysitters for each other, as they understood, and had experience of the conditions. And babysitting doesn't have to be in the evening).

Please don't be afraid to ask. Friends, neighbours, and all those mentioned above. Often people enjoy helping someone else out.

In terms of AIBU? No. You did what you could cope with at the time, and no harm has been done. If you could admit to your sister what you did, that would be helpful, as you can then work out together where to go next.

A lot of childcare courses require students to have practical experience. If you speak to teachers at any local schools or colleges, they may be able to recommend a student who could come and help you out - you may not want to leave the to sort out medical issues, but another pair of eyes, another pair of hands, and someone keen to do fun things with you children could be mutually beneficial.

I hope you get the help you need, and that things get easier for your whole family.

shewhowines Fri 22-Mar-13 15:17:39

Please, please see a doctor and tell him what you have told us.

You have coped brilliantly so far, but it's got/getting worse and your ability to cope is being stretched to the limits. Your mental health is important and you need some way of relieving the physical and mental pressure or it will come to a point where you wont be able to cope at all. (then where will you be?)

Insist (hard i know) that your DSIS understands that you are close to breaking point and you all need to get extra help, and insist that the doctor helps you too.

You must see today's crisis as the turning point where you must take action, for both your own sake and your Dc'.s and Dsis sakes

maddening Fri 22-Mar-13 15:28:27

Do her drs think there is any way of improving her prognosis?

aldiwhore Fri 22-Mar-13 15:34:46

I don't think YABU I think you are in an unreasonable situation, all of you, your sister included, your children, your mum and you! You are all coping as best you can.

You do need to explain to your children exactly what is happening to their Aunty, why she says bad words, how she can't help it. It will always be unpleasant for them to see, but it will not damage them if it is explained a lot... then you won't have to choose between your children and your sister, which is an impossible choice and OF COURSE you're going to choose your children!

But you shouldn't be in this situation. I don't know how a carer can help unless they are around 24/7. I have friends who have a parent with epilepsy, they've grown up with it, it doesn't phase them, as your sister is so close, your children shouln't be hidden from her, they NEED to understand. They will also know whatever bad words they overhear, though unpleasant, are not to be either judged or repeated.

I think your whole family could do with some advice on how to manage all the factors and issues surrounding you all. Good luck. x

ariane5 Fri 22-Mar-13 15:35:44

Sometimes she goes a while without having any at all then like this week has loads.

I don't like to admit to her how difficult I'm finding it as she doesn't like to feel she is a burden and I know it'll make her feel that way.

The past 2 weeks I have had a home start lady come round once a week for a couple hours on a wed but that is the day dsis bf has off work so she is never at home on a wed so the home start lady just plays with dd2 or helps me take her to preschool. They are losing the funding though so she will only be coming for another month.

DIYapprentice Fri 22-Mar-13 15:40:09

Ariane - I don't know much about seizures. Does your DSis's seizures only scare her, or is she likely to get hurt? Because while her being terrified is not good, it's far lower down the scale than your DC's problems.

Some other steps need to be taken I think - has any thought been given to a seizure alert dog?

ariane5 Fri 22-Mar-13 15:52:56

I have heard of those dogs (and also the hypo alert dogs) but all of us except dsis are terribly allergic to dogs and cats so it probably wouldn't work out unfortunately.

I just can't manage to juggle everybodys needs, I keep getting unwell all the time as am run down and eating rubbish (had a pack of munchies for breakfast, a tin of veg soup for lunch and about 10 cups of tea to keep me going so far today). I've had 3 courses of anti b in a month and I look haggard.

Really, I just wish either my mum or dsis bf would give up work and be her carer or that my dh would give up work and help with dcs but I know neither of those options practical.

Dsis wants to move out of home soon and I know it will just end up me going to her house as she will be unwell during day but she is adamant that now or when she has dcs herself that her bf has to keep a job.I don't mind helping I really don't but there's never a break.ever.

crashdoll Fri 22-Mar-13 16:02:57

Ariane Has your sister been assessed by social services? Does she need support in the shower etc?

Also, have you been in touch with the children's disabilities team? There is support out there. Unfortunately, you just have to fight for it.

I'm a student social worker and I have experience in a job where most of my day was spent fighting for services and also finding free resources. Please let me know if you'd like pointing in any directions or any other advice/help. x

Crinkle77 Fri 22-Mar-13 16:05:48

I think YABU. What is your sister had hurt herself when she had her seizure?

DIYapprentice Fri 22-Mar-13 16:14:08

Ariane - NO! NO! NO! NO! No!!!!!

You do NOT have to go to her house all the time if she moves out. If your sister wants to be independent, then I'm afraid she's going to have to grow up and face the realities of her condition and deal with them. That includes being open about them, and having other people care for her.

Quite frankly she is not in a position to be choosy about the sort of help she gets.

You CANNOT run yourself ragged - you have years of caring for your own DC ahead of you.

You are a person in your own right, you have the RIGHT to have time to yourself. You have an OBLIGATION to stay as healthy as can be for your own children.

ariane5 Fri 22-Mar-13 16:22:51

But she so desperately wants a normal life, to live somewhere, have dcs of her own but she can't be on her own with a baby if she has one so already she has been saying how she will need help as she sleeps a lot during day, won't be able to bath a baby herself etc in case ill.

She tries her best to help me if she can, ob not practical stuff as she can't babysit etc but she is lovely to dcs when she's well.I do feel bad though that I'm not able to enjoy my baby but I will have to make sure she can one day cope with/enjoy her dcs.

I'm just so exhausted.I don't know what I should/shouldnt do.I just wish for a day when everybody is well and I could take the baby for a walk in the park, get a coffee somewhere and feel like a normal mum to a little baby.

ariane5 Fri 22-Mar-13 16:28:55

I sometimes wonder if my mum is so reluctant to give up work as doesn't want to admit dsis so ill she needs full time care and dsis doesn't want to admit to herself she is ill.

spottyblanket Fri 22-Mar-13 16:43:18

Ariane: did you read mooglets post? I second what mooglet said. This is important.

HildaOgden Fri 22-Mar-13 18:02:21

I think you are brilliant to have coped so well so far,shame on the posters who decided to completely disregard the severity of your situation.You absolutely made the right choice today,as hard as it was.

I agree with the posters that say today is the day that things must start improving.Everything happens for a reason (don't mean to sound glib),and maybe todays' close call was a final warning to get a plan in action before something totally disasterous happens.

Please re-post this in Special Needs,the posters there are experts in telling you what help is available and how to access that help.You need extra help...if your sister is entitled to get a carer,maybe you could 'spin' it to her that you want to avail of that to make it easier for you to tend to the children?

Although personally...and I don't mean to sound harsh on your sister...but I think she is going to have to face up to the reality of it.That,if you are pulled between her and the kids again,you have to tend to the children as a priority.

You had no other choice today,Ariane....please don't feel guilty.

3littlefrogs Fri 22-Mar-13 18:20:04

crinkle77
Read the Thread. Please.

StanleyLambchop Fri 22-Mar-13 18:26:30

But she so desperately wants a normal life, to live somewhere, have dcs of her own but she can't be on her own with a baby if she has one so already she has been saying how she will need help as she sleeps a lot during day, won't be able to bath a baby herself etc in case ill.

But part of a normal life is learning to cope on your own. Not having your family have to come round and care for your child. If she wants a family she has to try and find a way to make that happen, without impacting on your family. It would be reckless to go ahead and have a child in the circumstances, and then expect you to carry the burden of looking after her & child, when you have a family of your own. Harsh but true. If she were more willing to look at other options for her care then I could understand you wanting to support her. But her insistance on only family caring for her is totally U.

FutTheShuckUp Fri 22-Mar-13 18:36:25

Things sound so stressful- can you speak to either your little ones health visitor or school nurse and see if they could refer you for some family support? Sounds like it would be a godsend.

tiredlady Fri 22-Mar-13 18:47:20

I feel for you OP. I am surprised you have been given such a hard time by some on here.
Your sister's seizure activity does sound very strange though. Most people with epilepsy don't have an awareness of what is happening during their seizure. The fact that she is aware and crying out for you as she knows she is having a seizure is extremely odd indeed

QueenOfCats Fri 22-Mar-13 18:52:53

Op I really feel for you - what a situation to be in sad

You're pulled all ways and this isn't fair or sustainable long term.

You're instinct as a mother is to put your children first and that's what you did. It was a split second decision, please don't be too harsh on yourself over it.

Take some of the advice given here - get your sister's neurologist to look into the symptoms that she's displaying that don't really "fit" with epilepsy. Get some outside help.

Good luck with everything Op smile

OTTMummA Fri 22-Mar-13 19:56:09

I know i am going to be flamed, but i don't care.

You must tell her you won't be able to help her when she has a baby op, i mean normal help etc fine, but every day, round the clock care? NO.

She has got to see how simply ridiculous it is to have a baby when her bf goes to work everyday?! and she can not function properly.
I know there is denial with disabilities, but surely even your mum must be trying to discourage her?

It would be different if she had appropriate help and had an actual plan in place with support from SS, but to just put this all on you is incredibley selfish, so, so selfish.

What happens when you get so ill that you end up in hospital or on antidepressants?
Who will look after her? she isn't your primary responsability, she is an adult she should made to realise that this is her disability and it shouldn't be impacting negatively on you or your childrens health.
I do feel sorry for her, honestly im not made of stone, but she has to accept that it is time for outside help, there is no way round unless your mum or her bf gives up work.

ariane5 Fri 22-Mar-13 20:16:29

I understand completely but she cannot/will not accept that she will need help from her bf-to be honest I don't think I would manage helping her if+when sge has dcs of her own.

I am totally and utterly exhausted by my own circumstances but my mum is old and tired and woulkdnt have the energy to help and we have no other family nearby. I am the only person available during the day and my dh drives so he is 'handy' for lifts/emergencies.

I don't begrudge her a life or dcs I want her to be happy but I feel like its at my expense I am in no way enjoying my dcs I am existing and I feel I am missing out-what quiet moments I could have to play with ds2 (he is my last) are taken up by caring for dsis.

I just can't do ir anymore, even my sister begged my mum not to go back to work this aft but I get the feeling our mum jusr wanted to get away from the situation.

ariane5 Fri 22-Mar-13 20:18:47

And after the horrendous day we had she managed to finally get up and go out to meet her boyfriend. I know epilepsy is variable and to be fair she had slept it off but I was left feeling a bit grumpy as all I was doing was going home exhausted AGAIN.

farewellfarewell Fri 22-Mar-13 20:39:54

OP you poor thing. I am sorry things are so tough for you. You had to make that decision because your situation is impossible. Your sister needs more support and you are not in a position to give it. Your own needs seem to be at the bottom of the pile, I hope things get better. Do not feel guilty about what happened, everyone has their limits and you have done so well helping others up to now.flowers

StanleyLambchop Fri 22-Mar-13 20:48:28

But your Mum and Sis are not in denial, your Mum is planning on leaving her house to your sister and cutting you and your brother out of an inheritance because she has epilepsy, so she is fully aware of your sisters health issues.Your sis is not trying to live a 'normal' life standing on her own two feet, she is getting a lot of special treatment. Which is fine if your Mum wants to do it, but why are you expected to as well??

Corygal Fri 22-Mar-13 20:50:06

You did have a choice. And you have a bigger one now.

YABU for leaving an epilectic helplessly and terrifyingly fitting, because you didn't want your children to hear it. You thought an 11 year old hearing a swearword was a child safety issue? Why couldn't the 11yo - NT presumably - watch your toddlers for 5 minutes? I'm confused.

But you have the choice to do the right thing now. As you're choosing not to cope, please be honest - at least say that you're not going to cope, maybe not go into the reasons - and tell your Dsis and DM so your sick sister can be kept safe.

To be honest, I think yr DCs would have been much more frightened by seeing their DM bail on close family when they were in serious trouble than hearing someone swearing. They'll be thinking you'll run out on them when they're sick and frightened too.

OP, does your sis have anyone else in with her for her neurology appts? It seems her symptoms are not typical, so is she telling all of this to the neurologist and pushing for it to be properly investigates?

I also think it's time you stood up and said things have to change. It's not fair for your sis to insist that you can help her, when you have disabled children to look after. She should also not be thinking of getting pregnant and expecting you to help with a baby as well.

It's time that outside help was sought.

Corygal Fri 22-Mar-13 20:53:39

God that sounds tough, sorry - I am on your side. What I mean is that you have to be firm about help - for everyone's sake, not least your own.

Corygal, read the thread. The 3 year old had a blood sugar of 2.2 at the same time. That is extremely dangerous and has to be immediately treated if OP wanted to avoid having the child hospitalised. The child is an unstable diabetic.

When my dad had a blood sugar that low, it was very difficult to get the level back up and he did have to go to hospital.

Corygal Fri 22-Mar-13 21:01:23

I am ashamed of myself, I only realised it was that hairy after I posted. '

I maintain tho that the OP has got to back out of her Dsis care, and pronto. Dsis having a baby would be, er, a little tricky for all - it's time for some difficult conversations, unfortunately.

ariane5 Fri 22-Mar-13 21:04:03

I am not bothered about my 11yr old hearing a swear word/seeing a fit that wasn't why I ignored dsis, I ignored her as dd2 was needing her blood sugar checking, the baby was crying and dd1 could not have been left with them as she faints a lot. I couldn't have met dsis needs as well. As cruel as it sounds I knew she was in her bed-terrified and screaming, yes but lying down and I checked her when I could.

I went to kitchen with dcs to do check etc as its 5d2 who copies the swearing and the baby gets upset by screaming, cries more which in turn makes dsis more scared as she can't work out what the noise is.

ariane5 Fri 22-Mar-13 21:10:27

My mum usually attends dsis appts with her, I am never told much all I know is what medication she is on and that's about it.

Corygal Fri 22-Mar-13 21:10:48

I'm sorry I sounded so bloody rude.

You need help - it's not fair to have two small children, one unwell, and an adult invalid needing you all the time - the tiredness is prob due to the babies, to be fair, but no one needs any extra stress and yr Dsis must be a hell of a worry to boot. Not to mention the screaming from all 3 of them...

The situation is unworkable. No one person could cope with what you're battling with every day. Talk to the GP - they will help lift the load.

ariane5 Fri 22-Mar-13 21:17:50

I am not sure it would go down well if I took it upon myself to involve outside agencies.

Dsis wants to have a baby in near future and I think the line of thinking is that if gp/ss etc knew about the level of care she needs then certain things could be an issue when she gets pregnant and I think she is terrified a baby could be taken from her as she isn't always 100 percent well and a baby may not be safe if she doesn't know who/where she is.

I either have to put up with things, beg my mum to give up work or dsis bf has to. If I alert anybody to the situation it could go against dsis and it'll be my fault.

HollyBerryBush Fri 22-Mar-13 21:23:44

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

FanjoForTheMammaries Fri 22-Mar-13 21:26:47

Really want to post a deletable and offensive word now

FanjoForTheMammaries Fri 22-Mar-13 21:27:12

<sits on hands>

StanleyLambchop Fri 22-Mar-13 21:28:26

Dsis wants to have a baby in near future and I think the line of thinking is that if gp/ss etc knew about the level of care she needs then certain things could be an issue when she gets pregnant and I think she is terrified a baby could be taken from her as she isn't always 100 percent well and a baby may not be safe if she doesn't know who/where she is.

But if she has a baby all the healthcare professionals involved will be aware of her condition. How will she hide her inability to cope from a health vsitor/midwife? She really needs to put support in place before hand, not just plan to get pregnant then emotionally- blackmail you into being the solution. You need to be firm with your family now, before it is too late. Tell your Mum you will not be your sisters carer. You are entitled to your own life!!

ariane5 Fri 22-Mar-13 21:30:17

Either way I couldn't win-tend to hypo dd2, screaming baby and dd1 off school unwell and leave dsis or:

Leave a ill 3 y o, screaming baby in the care of an 11yr old who faints to tend to dsis screaming and not knowing where she is....

I had a choice, I had to let somebody down. I chose to take dcs to kitchen deal with their needs and ignore dsis until I could go to her.

FanjoForTheMammaries Fri 22-Mar-13 21:31:21

Ignore holly's vile post

HildaOgden Fri 22-Mar-13 21:32:30

Stop doing it for a month.

You are covering the cracks over,the other people in this situation (mother,sis'bf,sister) need to see the actual reality of what is happening.

Rope your dh in to do the school runs for that month....have taxi fares put by if you need to get to the school quick....invent a reason that you cannot possibly leave your house for 4 weeks.But stop going to your mothers house for a month.

I guarantee you,they will wake up,smell the coffee and start addressing your sisters care needs.(and she is being totally deluded if she thinks she can bring a pregnancy/baby into the equation as things stand ...she really needs to see that)

OTTMummA Fri 22-Mar-13 21:32:37

<puts hands under bum>
Ah fuck it,,, do fuck off dear, vile piece of shite.

frumpet Fri 22-Mar-13 21:34:08

Can i ask an honest question here , is your sister at risk if you are not with her holding her hand ? Is she going to come to any real harm ?

The answers to the above questions will determine whether i think you are being unreasonable or not .

Disclaimer : whilst i appreciate it must be awful for anyone to suffer from epilepsy and i have a child that has , the OP was stuck between a rock and a hard place on this occasion . If her sister isnt at risk of real harm , would it be ok to leave children alone that might be .

Inertia Fri 22-Mar-13 21:35:29

Ariane, you come across as such a caring lovely person - but you are going to make yourself ill at this rate.

Your sister and your mum need to face up to the ramifications of your sister's illness. It is physically impossible for one person to be the sole carer - and always meet all the medical needs of - 4 people with potentially life-support threatening medical conditions. Your sister cannot expect you to take on the care of another baby as well.

Please post in a forum where you can get advice from experts. This isn't working.

ariane5 Fri 22-Mar-13 21:35:39

I wouldn't mind helping dsis but not to the extent I am now its too much. In an ideal world I like dm or dsis bf to work part time just to give a bit of a break, and of course I would help her when she has dcs but she sometimes sleeps all day and I wouldn't want to commit to caring for a baby on top of everything else. For now its all hypothetical talk but if it becomes reality I will be expected to do too much but to bring up the subject will not go down well. I just can't carry on like this.

Bunbaker Fri 22-Mar-13 21:37:05

"I read the Op. And my blood ran cold. Op, you are a disgrace to humankind. I'm sure you will validate your choices in your mind. But frankly, you are absolutely sub-human."

It is clear that you and some other posters on here have only read the OP's first post. She has young children with medical issues that couldn't be left.

"I am not sure it would go down well if I took it upon myself to involve outside agencies."

Tell them tough. You can't be all things to all people and you can't be in more than one place at a time. Something has to give.

frumpet Fri 22-Mar-13 21:40:54

Also , if i were you and your family i would be beating down the door of the neurologist your sister is under to get her epilepsy under better control .

ariane5 Fri 22-Mar-13 21:41:16

Dsis has only got injured when having a big fit never an absence one or the episodes I have described here.

She gets terrified, screams but is always on floor or in bed as they often happen on waking, she seems to have difficulty swallowing when they happen and makes gurgling noises and her arms and legs are rigid but it isn't a full blown fit if you know what I mean its hard to explain unless you see it.
Really she just needs reasurance till it passes but she grabs onto you and won't let go and its so hard when dcs are downstairs or I'm holding the baby as can't get away till its passed.

I cannot say for sure she is in no danger but this morning dd2 was in immediate problems with needing blood sugar checked, consequent hypo etc.

crashdoll Fri 22-Mar-13 21:42:01

Ariane, in the nicest possible way, you are being unreasonable for NOT telling your mum and sister that you simply cannot care for her anymore. You are not helping but actually putting her and your children at risk. Is that not more important than keeping the peace?

Inertia Fri 22-Mar-13 21:44:06

Holly, try reading the whole thread and not just the first post.

OP was dealing with a very young child with diabetes who needed her attention to deal with a hypo. This is a potentially fatal condition.

Calling somebody sub-human because they deal with their diabetic toddler 's urgent medical needs is despicable.

edam Fri 22-Mar-13 21:46:46

Ariane, you are being pulled in four different directions and that's dangerous - at some point, something might well give. You all need more support. Carers are entitled to an assessment of their needs, as much as the person who needs care is. Please talk to your Mum - this a dangerous situation and while you are clearly trying your very best, it's not safe to carry on like this, for any of you. You need to talk to social services about. And possibly a carer's charity might help you work through the options - Carers UK perhaps?

Do your sister's neurologists realise quite how serious her condition is? Have they tried lots of different combinations of anti-epileptic medicines? Sometimes if you don't shout loudly enough, they assume you are coping, and don't investigate hard enough. (Although it is equally true that medicine doesn't have the perfect answer for every single person with epilepsy, sadly.)

toomuch2young Fri 22-Mar-13 21:47:51

ariane ignore the vile posters.
Sounds like an incredibly difficult and stressful situation for you.
At least by posting you have got some good advice and hopefully have some ideas of how to get help, which will likely need to be outside agencies.
Wishing you all the best.

ariane5 Fri 22-Mar-13 21:48:10

I actually said to my mum today these exact words when she came in from work:

"I can't do it anymore, dcs were unwell dsis was screaming I couldn't help them all I just can't cope with it something needs to get sorted out"

I told her I was exhausted but she said she needs to keep her job-i think she knows dsis will move out soon and if she's then given up her job she won't be able to afford house/bills etc I think she's hoping dsis bf will have to be the one to be her carer when they get a flat and untill then I'm left with all the responsibility.

I will try again speaking to her but it won't change I usedto phone her at work when dsis was really ill but it got to the point where she would say she just couldn't come home after the first few times.

ariane5 Fri 22-Mar-13 21:50:33

Its probably my fault too for drip feeding-im just so tired I can't even post everything properly, I should have included EVERYTHING in my op but I was in a hurry in between sorting dcs out and just wanted some perspective on things.

crashdoll Fri 22-Mar-13 21:50:35

Your sister is not your responsibility, she has her partner and your mum. If she's willing to accept help, she could be assessed by social services. You have 4 children with complex health needs and they need to come before your sister who is an adult.

edam Fri 22-Mar-13 21:50:47

Your Mum is being very unreasonable and is putting all of you in danger. She needs to sort her act out - or you have to do it if she won't face up to the responsibility. Please do talk to carers' UK - link in my first post. They will help you through the options. Just talking to someone who understands might really help!

ariane you need to get a meeting together, DM, DSis, Dsis BF, and most of all your DH to back you up.

They need to discuss this properly. You need to highlight that if things carry on as they are, you are facing burnout and your DCs come first.

Also, if your Dsis wants a baby, she must speak to her neurologist before TTC. My ExSIL (lovely lady) once told me that some of her epilepsy drugs are incompatible with pregnancy, and her neurologist was attempting to change her medication to enable her to have a baby without causing harm to the baby.

ariane5 Fri 22-Mar-13 21:53:04

Regarding dsis medications I do know that the drs are limited what they can give her as she wants to start a family and there were issues with some of the drugs so she probably isn't on best regime to manage her symptoms but is on best regime for a pregnancy if one were to occur.

crashdoll Fri 22-Mar-13 21:55:01

I agree with edam your mum is the one being U and as hard as it is, you have to be the one to put your foot down. x

ariane5 Fri 22-Mar-13 21:55:19

X post fryone I think that's why its not well controlled as she's not on the best drugs at present as she doesn't want to harm a potential baby.

ariane5 Fri 22-Mar-13 21:59:23

My mum is exhausted too - 3 times during the night she was up apparently with dsis screaming, I think work is her place to get away from it all, I can't blame her. I don't think any of us knows what to do.

I will have a look at carers link. I wish they would accept outside help even for a couple of hours just to give everybody a break. I don't like leaving her to be scared on her own but I need help to deal with everything and an extra pair of hands would make it easier for me to help everybody else.

StanleyLambchop Fri 22-Mar-13 21:59:41

We seem to be in a wierd AIBU situation where the majority are saying YANBU but the OP keeps trying to make excuses for her Mum/dsis which then make her seem U. OP YANBU. Please listen & get help!! Your Sis is not your priority, your children are!!

OhDearieDearieMe Fri 22-Mar-13 22:00:53

What Stanley said. That, and nothing else really.

ariane5 Fri 22-Mar-13 22:02:42

I just wanted to help everybody. I can't do it can I?

I will try to speak to them again I can't face another day like today.

I'm sorry but it sounds to me that your Dsis needs to realise that if she wants a baby she must get some other help in. I wonder from your answers if, once a baby is born, her medication could be changed to reduce the attacks she is having, which could go a long way to helping the situation.

Point is, is she really telling the neurologist the full extent of the attacks?

ExSIL has now resigned herself to not having a biological child. Her epilepsy is severe enough that the medication couldn't be changed successfully. The number of attacks she was having every day meant she had no real life outside the house and she didn't want her mum forced into caring for her. Once she went back to her old medication she was fine, got a new job and moved out.

airforce1 Fri 22-Mar-13 22:04:57

Go to your GP and get advice about what to do next time.

OloeufiaMumsnet (MNHQ) Fri 22-Mar-13 22:08:09

Hello there
Sorry to hear about this. do let us know if youd like us to move this thread out of AIBU
Thanks
MNHQ

Bessie123 Fri 22-Mar-13 22:11:47

ariane it sounds like your life is really tough at the moment. Was it much easier with 3 dcs? I don't get how you ever thought you could cope with4 dcs with sn and care for your dsis. Did you plan for this?

frumpet Fri 22-Mar-13 22:16:12

I have to say that as some others have said , your sisters fits sound a bit odd . If she is aware , they dont sound like true grand mal type fits and yet at the same time they are very different to my experience of abscence type fits , again there is little awareness during the actual fit . I hate to say this , but i am going to anyway , are you 100% positive that there isnt some sort of mental health issue that is occuring . I am not saying your sister isnt epileptic , just it all sounds very strange .

Any Neurologists out there , feel free to correct me .

Ariane. YANBU please get some help!

Ignore the awful things that have been said by the OP reading postersangry

FWIW my DD has/had before meds- complex partial seizures and absences and with all forms of these types of epilepsy the sufferer is not aware according to DDs neurologist... Sounds like sleep paralysis to me (a friend had this induced by cluster migraines) and she is screaming for attention but not because she is in danger.
IMO you made exactly the right decision and your sister needs to start to think about what is best for her health RIGHT NOW rather than what sounds like selfish wants (moving out, having a baby she knows she can't care for, refusing to face her issues etc). I apologise for speaking out of turn as it is very hard adjusting to a major health decline etc I understand as I have been there with a different illness but she is 25 so not a child...

If she refuses to accept what you are saying (can't cope etc) then it basically means she cares alot less for the health of you and your DCs than you think... It is a no win situation but you need you put you and your children first.

ariane5 Fri 22-Mar-13 22:20:42

It was v difficult before but tipping point was dec when dd2 diagnosed with diabetes.

It has been awful with 4 dcs with genetic issues but that+diabetes+dsis suddenly getting worse has caused tgis crisis.

I have been run down lately so not coping as well as I could, not eating well so my own fault.

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

Dsis def has epilepsy (mri confirmed) but the episodes are strange I agree, they are awful though.

Bessie123 Fri 22-Mar-13 22:23:55

I can't think of anyone I know who could cope in your situation, tbh. I think your mum and your dsis need to discuss some alternative options for her care, it's obvious that there are too many demands on you.

sweetiepie1979 Fri 22-Mar-13 22:24:37

I know you weren't been intentionally cruel. Your split. But next time you should go to your sister. Good luck hope you find your balance.

StanleyLambchop Fri 22-Mar-13 22:28:33

I think the seizures are focal (partial) seizures. Quite common I believe.

When did DSis get worse? Is it due to meds changing?

I think maybe she needs to go back to see the neurologist ASAP as regardless of the Epilepsy there are obv more issues and it is selfish of her if she refuses and then relies so heavily on help whilst making you feel guilty for wanting extra support (by refusing outside help)

frumpet Fri 22-Mar-13 22:29:48

Sorry i wasnt for one moment suggesting that your sister doesnt have epilepsy , just that sometimes people with chronic long term conditions also develop mental health issues , unsuprisingly really . It could well be that it is simply a case of your sister not having her epilepsy properly controlled due to the ttc issue . But is she telling all this to her neurologist or is she going in with a 'im fine' attitude ? they can only act on the information they are given by the patient .

Ikeameatballs Fri 22-Mar-13 22:39:05

Your sister's symptoms sound really unusual. They might be a firm of partial seizure or they may be something called pseudo seizures where stress can cause someone to have the physical signs and symptoms of a seizure without the actual underlying changes in the electrical activity of the brain. Very careful investigation can be needed to determine what is happening especially as both problems can occur in the same patient and they need very different types of treatment.

I think your first step needs to be organising an appointment with your sister's neurologist. I would insist tat you attend the appointment so that you can explain what is happening to your sister and be sure that any advice is followed. You cannot continue as things are.

CatOnMyLap Fri 22-Mar-13 22:39:17

ariane I feel very sorry for you. You clearly have a lot to cope with and I think some people on here are being a bit harsh on you. I hope things get better for you and your family soon and that you find a way to sort things out. smile

tiredlady Fri 22-Mar-13 22:41:38

I agree with frumpet. Have you decribed this type of fitting to her neurologist. Are they sure there is no element of pseudo seizures? I don't doubt for a minute that she has genuine epilepsy but she may also have non epileptic seizures as well that are more emotional/behavioural in origin

3littlefrogs Fri 22-Mar-13 22:46:51

I have never come across the type of seizure you are describing. Every single patient I have nursed with epilepsy has had no awareness of the actual seizure. Plenty of people get warning signs and can feel a seizure coming on, but very quickly lose consciousness until it is over.

The thing is though, her neurologist will not discuss your sister's health with you or anyone else without her written permission.

BoulevardOfBrokenSleep Fri 22-Mar-13 22:59:39

ariane, this is just madness, you have four ill kids of your own to look after, how can you be your sister's carer as well? You are giving and giving and giving, and there will be nothing left of you.

I think you need to be more selfish - your sister's desire to have a baby is something her and her BF need to work out the logistics of between them, it shouldn't involve you needing to step in as a near-full-time carer.

I don't mean to scare you, but how much use will you be to your family when your health (or mental health) is destroyed by living like this?!

cjel Fri 22-Mar-13 23:05:37

I am interested to read of pseudo seizures because I was starting to wonder if she was for real. She has been upstairs in bed all day running you ragged, then can get up and go and see bf? She wants to leave home and have a baby when she expects you to come running several times a day? Yes she may be very ill but there are clearly times when it could be pseudo. Your mum sounds like she thinks its not all it seems as well if she has started to not come running. You should not worry about her being cross if you have had enough. Can't your DH step up and support you in not being her carer. This sounds awful for you and you must start to put yourself first.

HildaOgden Fri 22-Mar-13 23:20:03

Have your sisters symptoms suddenly worsened since your child was diagnosed with diabetes?Did she have these types of unusual fits before that?

frumpet Fri 22-Mar-13 23:27:40

I would ask your sister if you can go with her to see the neurologist so you can help explain the type of fits she is having , this will help the neurologist determine a treatment plan for her . She cannot possibly mind that surely ?

frumpet Fri 22-Mar-13 23:29:35

I have seen plenty of people experience psuedo siezures , the biggest difference appears to be the recovery period following them as opposed to a grand mal seizure .

I do think YWBU, just because you shouldn't have been in that position to begin with. It's obviously far too much for you to deal with.

edam Fri 22-Mar-13 23:34:25

cjel, pseudo seizures do not mean the OP's sister is making them up. Your post reads as if you think she is. If so, please read Ikea's post again.

ariane5 Fri 22-Mar-13 23:41:03

Dsis has had these episodes since she was a child-I wouldn't say she is 'aware' of much during them she calls for me or our mum repeatedly, screams about a 'smeLl' and is very scared. Gp originally diagnosed panic attacks.

She does sleep after for a bit but not hours like after a big fit,sometimes just minutes then she's ok again.

blueballoon79 Fri 22-Mar-13 23:43:27

I had to post on this as all I'm seeing here, Arianne, is what your mother wants (to keep working), what your husband wants (to work) What your sister wants ( to not accept outside care but to be quite content to run you ragged)

What do you want Arianne? WHat do you need?

It's time you asked yourself that and it's time you put yourself and your childrens wants and needs over everyone elses.

Just caring for three ill children alone is a massive commitment. I have two disabled children I care for alone so can empathise fully.

It appears to me that you're expected to martyr yourself to ensure that everyone else gets what they want.

It's time for a dose of reality.

You WILL end up seriously ill yourself if you carry on like this. WHat will happen then? WHo will care for your children? Who will care for your sister.

Your sister must accept that she needs outside help. Being completely dependent on you is totally selfish of her and her expecting to have a baby, which I presume she expects you to care for as well is just unbelievably selfish.

I'm sorry but it appears to me that you're being treated very cruelly.

OTTMummA Fri 22-Mar-13 23:46:29

Calling out for you doesn't sound typical of an absent seizure, I'm no expert but it doesn't sound quite right, infact it sounds a lot like when my brother used to have night terrors :S

ariane5 Fri 22-Mar-13 23:51:56

I am happy to help dsis. Just not ALL rhe time. In an ideal world if I could have anything I would like to have dcs conditions more under control, to spend more time with dcs and for somebody dh/dm/dsis bf to help more which would mean one or more of them working less hours so that not everything is my responsibility.

Thumbwitch Fri 22-Mar-13 23:53:19

Ariane - in all seriousness, your family have to stop relying on you (I mean your sister and mum) in this situation. Just imagine if you tripped and broke a leg? What would you do then? What would they ALL do then?

Your sister may want to have a baby but she has to be more realistic about it right now - she is in no fit shape to have one. She cannot care for it herself - she can't even care for herself herself - and while I defend her right to have a child at some point, she cannot do it while she has no proper care in place.

You have your own children and family. They have to take priority for you. How is it going to feel for them if your sister's future baby takes precedence in care because she can't cope? And of course the baby can't take precedence because your own children have their health issues to deal with.

Let's just take the hypothetical one step further - what if the baby has problems? then you have ANOTHER health-challenged person to deal with as well!

Enough is enough. Your sister needs another source of care. You have enough to deal with. Stop before you break down yourself, please, for everyones' (not least yours) sake.

ariane5 Sat 23-Mar-13 00:00:47

I am exhausted by it. Constantly ill on anti b and run down.

I have tried my best but today proved that I can't do it.

cjel Sat 23-Mar-13 00:14:52

Just read my last post and you're right it did sound if I was saying it was all made up. I'm sorry its not what I meant.I do think they might have a bit of emotional trigger. I think she should go back and see if she can have better meds. I think what I was trying to say was basically that living like this is no good and OP must get her own help sorted and her s should get her support without OP.Don't think I am saying this very well but am not meaning to be offensive.

Oopla Sat 23-Mar-13 00:56:15

Ariane, if you were a single woman this would be some hard kind of sacrifice to make but you have babies to care for.

Your mother should be caring for you sister. If she can not or will not give up work then she needs to arrange alternative care.

The part you mentioned about your mum not wanting to give up her job because dsis will be moving out soon. It's like the whole family is playing pass the parcel with your sister.
You have just as much right to a life yourself and your babies have a right to seeing their mother smile.

Oopla Sat 23-Mar-13 00:58:22

I so so hope you enjoy your weekend with your family. Recharge if you can.

Greenshootsandleeves Sat 23-Mar-13 02:10:42

Tough love required for your sister I'm afraid. She is just going to HAVE to "accept her condition", get whatever help she can and grow the fuck up a bit. She can't hold the family to ransom in this way. She simply cannot have someone to hold her hand every single time she has a absence.

You are going to end up ill and completely burnt out if you carry on like this sad

CouthySaysEatChoccyEggs Sat 23-Mar-13 02:36:16

All I can say here is to give a hollow laugh to the people who are suggesting that this family might need outside help.

Yeah, of course they do.

Doesn't mean that anywhere is actually able to offer this help though...

(Says the Lone Parent with epilepsy, hypermobility syndrome - possibly EDS like the OP's DC's, and arthritis, that has a 15yo with a list of disabilities longer than your arm including Autism and hypermobility syndrome, a 10yo just embarking on the assessment process for Aspergers, a 9yo with Autism, Chronic asthma, encoparesis and severe Hypermobility syndrome (being assessed for EDS in May due to developing complications from the HMS), AND a toddler that is 'hyperactive, probable ADHD', is being assessed for Autism in May, AND has multiple life threatening allergies...WITH NO HELP FORTHCOMING)

The help just isn't there - though all these conditions are disabling and require extra care, as do those in the OP's family, they are probably (like my family's conditions) all just a tiny smidge below the threshold for qualifying for any help with care.

It's SHIT, but it is the reality out there for many Carers. They can be caring for multiple people with disabilities with absolutely no outside support, and sometimes have their own disabilities to contend with too.

Where do you propose the money to provide this mythical care comes from?!

CouthySaysEatChoccyEggs Sat 23-Mar-13 02:50:07

OP - if your Dsis is having this many absence szs then she NEEDS to go and see a Neurologist, as her meds aren't working well.

There are a number of meds available, and even more combinations of meds, that may help to control your sister's seizures better.

I think that whatever med she is on, either she needs her dose raised, an adjunct med added, or a total change of med.

When was her last Neuro appt? Are you / your mum / her keeping a seizure diary? That would help a Neuro to adjust her meds.

Is there a hormonal element to her seizures - are they worse when she is due her period for example?

I think the focus needs to be on gaining better control of your sister's seizures, as that would ease a huge strain on your whole family.

Caring for multiple DC's with disabilities is hard enough, without caring for an adult who isn't doing the best they can to manage their own disability.

You NEED to put your own DC's first. Your sister is NOT your responsibility, she is your mum's responsibility, and your responsibility is to your own DC's.

Remember - it should be you having enough energy to care for your DC's and their disabilities before you think about offering care for your sister.

Harsh as it sounds, the people dissing you on this thread obviously have no clue just HOW hard it is to look after multiple DC's with disabilities.

My first thought, on reading the OP, as someone with epilepsy, is God NO don't leave her alone, risk of obstructed breathing for starters...but in realising that you were already caring for 3 DC's with disabilities, WTF else were you meant to do?!

CouthySaysEatChoccyEggs Sat 23-Mar-13 03:12:06

What I don't understand is why none of the adults involved other than the OP seem to be taking a 'caring' role? OP's DH? At work. OP's Mum? At work. Sister's boyfriend? At work.

I think that NONE of these people dumping all the 'caring' work on the OP have the faintest idea of how to ACTUALLY care for all these people at once, alone. OAP's mum will usually only have the OP's sister to worry about. Sister's boyfriend ditto. OP's DH when he's not at work will have their DC's to care for but not the OP's sister.

OP, tbh, you seem like you feel you can't say no. But you can. You can easily turn round to your mum (who is out of order on the house thing IMO anyway), and tell her that in order to properly care for your OWN DC's, SHE (as in your mum) needs to find another way to look after your sister.

Because you ARE too overstretched already to do this.

You won't be giving YOUR DC's with disabilities the best care you could and should if you are stuck upstairs with your sister every time she has a seizure. And it's THEM that need to come first to you.

ZebraOwl Sat 23-Mar-13 03:21:56

Oh Ariane, I am so sorry to read this sad I think you need to get yourself a support structure in place because there's just too much going on for you (anyone!) to cope with.

Your sister is, quite frankly, being selfish. I really REALLY get how dire it is to find that, actually, you don't get to have a "normal" adult life. But she has to learn to cope with that & to accept her limitations - including, sadly, possibly not having a biological child or at least delaying TTC for some time. Certainly she can't expect to live independently with things as they are now!

I am very concerned by the management of her epilepsy & agree with the posters who have suggested it sounds as though she is having non-epileptic seizures alongside the epileptic ones. I don't know anyone (& one of my friends with epilepsy does seem to Do All The Things And Then A Few More Cos She Is A Special Packet Of Biscuits) who speaks during a seizure. Noises are not unheard of (pun not intended; too tired to think of rephrase) but not properly articulated words. Also, reassurance can help someone coming out of an epileptic seizure, but it shouldn't be having any effect during it. Otherwise, if it happens on waking, it sounds as though it could be some kind of night terror rather than a seizure.

Surely your sister can't be telling her neurologist the (whole) truth if they're not seeking to alter her treatment regime and/or doing further investigations. Am a bit concerned about her diagnosis being confirmed by MRI as MRI can't actually be used as a definitive diagnostic tool. Its purpose in epilepsy diagnosis is too look for things that might cause seizures i.e. tumours or lesions. If her seizures have suddenly worsened & the diagnosis was made on the basis of abnormal findings on an MRI she should be investigated as a matter of urgency given it suggests a change to the tumours/lesions shown on the original MRI. (In fact, should she not be getting fairly regular MRIs in case of changes? I think that's the norm... Worrying if she's just being left to it.) It sounds to me as though she needs to have a sleep study done to find out what's going on. Would she be willing to have someone accompany her to her next appointment to talk about what's going on & talk about further investigations & treatment options?

Regardless of the origins of her seizures it sounds as though your sister needs some psychological support to deal with the impact of having epilepsy. At the very least she should consider making use of services like the Epilepsy Society Helpline. It might also be worth your phoning them as they would be able to direct you to appropriate sources of support. Epilepsy Action also organise local support groups for people with epilepsy & also for people involved in caring for people with epilepsy.

You really are being pulled in too many directions at once & the end result will be that you snap when you reach the point of finally being pulled once too often and/or too hard. Please try to make the changes you need to to stop that from happening. Various people have posted links to possible sources of support & I think you should be looking into those & making if very clear to [the adult members of] your family that things simply cannot go on like this & you all need to be making changes.

MusicalEndorphins Sat 23-Mar-13 03:32:13

ariane, I am sorry that your circumstances are so stressful. It really is far to much for one person to bear all alone, and I hope that you will encourage your mother to try and get your sister some better help than she currently has.
Has her neurologist suggested surgery?
For those who mention the strangeness of your sisters seizures, here is one link that describes some unusual seizures many people have not heard of.
www.epilepsywarriors.org/epilepsy-warriors-library/40-different-types-of-seizures/

Kytti Sat 23-Mar-13 05:49:18

My MIL died alone during an epileptic fit. If you can't be there for her, someone else should be. YABU. It must be terrifying for her. Just hope you never need anyone and are ignored, eh?

Kytti Sat 23-Mar-13 05:52:30

Just realised you have DC's with disabilities too... you shouldn't be the person who has to care for her. Sorry about that. Try to ensure your sister gets some help though, or make sure your Mum does. Your sister shouldn't be left alone either.

CouthySaysEatChoccyEggs Sat 23-Mar-13 08:58:28

It sounds to me like your mum and sister want you to be, well, their 'servant' springs to mind - always giving up the life YOU want to facilitate their wants.

Do any of your family actually think about YOU?

Because I'm not seeing it tbh. It ALL seems to be set up around what your sister wants, and what she wants, she will get.

But it doesn't have to be like that. You CAN SAY NO!

No way on EARTH should you be putting your sister before your own DC's. I'd make it VERY CLEAR to your sister and mum that if your sister moves out, then it is HER BOYFRIEND who will be responsible for her care.

Either HE will have to give up work to care for your sister OR your sister will have to accept outside care.

And for right now? SAY NO. You are not able to look after YOUR OWN children properly whilst trying to deal with your sister. That is unacceptable.

Right now, YOUR MUM needs to either give up work to care for your sister, or she needs to get some outside care in for your sister.

If your sister does not like that, then she is likely to end up alone. It's NOT your responsibility.

You are unable to look after your own DC in the way you would like to, and should be doing, because you almost seem bullied into tiptoeing around your princess sister.

And why is she always upstairs anyway? It would make it a bit easier for you if she was downstairs having the seizures, as you could keep an eye on your DC's too. Your DC would soon get used to seeing the seizures, and I can't understand why she makes life even harder for you by staying upstairs.

CouthySaysEatChoccyEggs Sat 23-Mar-13 09:05:58

It WON'T be 'your fault' if you alert the Authorities.

You are a Carer. Request a Carer's assessment. Be honest with them about your sister's care too. You aren't then involving anyone for your sister, but FOR YOURSELF.

And the only way it would affect things if your sister had a baby is IF SHE WOULDN'T ACCEPT OUTSIDE HELP. Which would be HER CHOICE NOT TO.

I am a Lone Parent to 4 DC's, 3 with dxd disabilities and one starting the dx process. I have all my DC's with me. Because I accept whatever help is offered to me!

PLEASE ask your GP for a Carer's assessment, and he will contact the relevant people. That is FOR YOU.

Fuck anyone else - YOU are doing all the caring, so YOU get to ask for a Carer's assessment. You don't even have to TELL them, as it's personal to YOU, the person doing the care.

CouthySaysEatChoccyEggs Sat 23-Mar-13 09:16:02

Ariane - you DO know that if they have already changed her meds then she is probably already TTC. Which means you need to stand up and YELL that you are not taking on the responsibility of caring for a baby if your sister has one. You NEED to get this into the open NOW.

I'm thinking that it is time to break away from this situation, your DC's NEED you, and you are considering changing YOUR life, with thinking about needing YOUR DH to give up work, because you are being overstretched already because of caring for your sister.

Why should the responsibility of caring for your sister mean your DH giving up work, or being the one to come home from work in an emergency?

Your mum and sister have done a good'un on you, to the point where even your DH is running his life around his SIL's care. If I was him I'd be apoplectic with fury at your mum and your Sister's boyfriend - it seems that currently even your DH is doing more of the care than them.

You might say no to that - but he IS. Because HE is having to pick up the slack when YOU are burnt out because of running around after your sister.

Tbh, your mum and your sister's boyfriend, and even your sister are making me very angryangryangryangry for you.

CouthySaysEatChoccyEggs Sat 23-Mar-13 09:25:52

They are all incredibly selfish. In sorry, but they ARE. And don't you have a brother too? Where is HE in helping with your sister's care?

If HE is able to walk away from this BECAUSE IT'S NOT HIS RESPONSIBILITY, then why can't you?

What is stopping you?

ariane5 Sat 23-Mar-13 09:27:27

Dsis is always upstairs as when I get to my mums in morning she is still asleep and often unwell on waking in bed, then sleeps for a bit then ill again.

Sometimes it does happen that she's ill downstairs then wants to go to bed after (can be a job getting her up there) and she likes peace and quiet and dcs make her worse, some mornings they get the blame if they have cried and woken her and she's then ill she has to be woken quietly and gently or has these episodes/seizures so it is hard trying to keep dcs quiet so as not to make her more ill. Disturbed sleep/abrupt waking makes her really unhappy/ill.

Tried to speak to dh this morning and it all came out, I was in floods of tears, he said my mum needs to give up work and if she won't I need to explain to my sister (when she is well to understand) that although I am in the house I can't always run to her and that she needs to know this.

He suggested I just get a bus home each day or even just let him drop dcs at school and not go there but I do feel I should still help but not as much. I'd be happy to help sometimes but in a more supported way not all by myself like it is now.
I do sometimes need the help-there have been occasions when one of dcs has dislocated/been ill and they have helped me looking after another dc while I go to hosp, it does sometimes work both ways its just lately its got too much with dealing with dd2 unstable diabetes.

I will go to gp and ask about carers assessment I am looking after 4 dcs that are unwell I need help for me with them its so hard, let alone with dsis and other issues too. I am trying my best but don't want to get ill myself dh+i struggle we both have eds (dh v bad daily knee disl but I'm ok I manage with painkillers so not a big issue for me).

I think yest needed to happen to make me realise I can't carry on this way.

ariane5 Sat 23-Mar-13 09:31:06

Our brother moved away a while ago. He has distanced himself as doesn't like the situation/them.

sherazade Sat 23-Mar-13 09:32:12

YABVU. In your op you were worried about your children copying her swearing or your baby crying more than you were worried about hypos and fainting. Your poor sister.

FanjoForTheMammaries Sat 23-Mar-13 09:33:26

RTFT

ariane5 Sat 23-Mar-13 09:35:50

Yes true my OP didn't give full details but I did mention dd2 diabetes-even posting is hard I can't give anything my full attention so prob am guilty of drip feeding.

Sorry

FanjoForTheMammaries Sat 23-Mar-13 09:38:44

I think people are guilty of being a bitInignorant and thoughtless tbh

ariane5 Sat 23-Mar-13 09:40:03

And I worry about baby crying and tending to dsis as it makes her worse-he gets scared/cries/she gets upset by noise/screams more. Vicious circle.

Yesterday I was about to do dd blood sugar when she started calling I just took them all away to kitchen to do it and because I couldn't deal with everybody. I checked her as soon as had given dd2 sugar for hypo then was up+down checking dsis/dd2/ds2/dd1 for rest of day. It was just that split second I was getting blood sugar test out when she called and my heart sank.

frumpet Sat 23-Mar-13 09:41:01

OP , can i just ask , how often is your sister having the classic grand mal type seizures as opposed to the screaming out type seizures?

ariane5 Sat 23-Mar-13 09:42:32

And it is true-I don't like my 3 y o swearing, it is so hard to explain to her not to copy and her vocabulary is quite horrendous sometimes due to hearing things. I know it shouldn't matter its not dsis fault but is hard to explain when we are out/at pre school sad

ariane5 Sat 23-Mar-13 09:45:21

She rarely has big seizures, she has absence ones where goes blank and also the screaming out episodes but hasn't had a big one in years.
I think her meds stop the big ones but not the others.

Megatron Sat 23-Mar-13 09:48:16

You need outside help this is not workable. Your sister needed you but if my DD feels hypo, checking her blood comes before everything else too. Its also likely that your 3 year old is completely hypo unaware so I totally understand you not wanting to leave them. I never took my eyes off DD at that age as I was constantly looking for signs. I feel for you I really do.

CandyCrushed Sat 23-Mar-13 09:54:11

OP

Please make sure you carefully read all the helpful posts on ths thread. There is a lot of good advice. Maybe get your DH to read them with you and write a few things down.

Ignore the mean posts obviously smile

ariane5 Sat 23-Mar-13 10:25:02

I will def go to gp I need some help.

I will try and speak to my mum again but really get the feeling she needs to work to save her sanity as weekends by all accounts are hell (I'm at home at weekends) and she struggles with dsis being ill/unhappy/meltdowns as dsis can't come to terms with condition.
Then she will go out, leaving our mum in pieces and I think that's why she works to have some normality where her life isn't ruled by illness.
I don't think dsis means to do this, she has always been ill but never accepted it and when my mum cried once that the last few years have been hard for her as a carer dsis screamed at her she had no right to complain as she wasn't the disabled one and had nothing to complain about.
They are thinking of attending a group soon but dsis has told DM that she is not to go off to the 'carers part of the group' to have tea and chat that she MUST stay with her. Dsis also petrified of witnessing somebody having a fit whilst there. The poor thing is in denial and she can't cope with what she has and I can't help any of them I just don't know what to do.

I am going to go to gp on monday and see what they suggest.

chartreuse Sat 23-Mar-13 10:47:56

What a nightmare for you Ariane. You need to prioritise your health and your childrens needs.

I don't mean to sound unsympathetic to your sister, but she sounds incrdibly selfish. Has she ever had counselling? It sounds like she cannot come to terms with her ilness, but if she has had this condition since childhood, she really needs to accept the reality of her life and stop holding you and her mum to ransom over it. Time for some tough love. See if some counselling can be organised for her and then try to focus on yourself and your children.

You sound like a lovely person, please look after yourself.

StanleyLambchop Sat 23-Mar-13 11:14:19

They are thinking of attending a group soon but dsis has told DM that she is not to go off to the 'carers part of the group' to have tea and chat that she MUST stay with her. Dsis also petrified of witnessing somebody having a fit whilst there. The poor thing is in denial and she can't cope with what she has and I can't help any of them I just don't know what to do.

Poor thing, my arse. She is being really selfish, it is all about her. She does not want to witness someone having a fit, but it is alright for you to be round her with your children when she is having one! Does she not think they feel the same way? She has been allowed to become a bloody princess because of her condition. Your brother has walked away (and your Dad, If I remember right) You need to stop having your strings pulled by her. Cut back on the care. Its the only thing you can do.

edam Sat 23-Mar-13 11:42:23

I'm so glad you are going to your GP. You definitely need support, you poor thing, and your sister needs to go back to her neurologist and explain exactly what is happening here, ideally with someone who has seen her seizures. The current treatment is not sufficient. I suspect the doctors don't actually have the full story - they would not be happy about continuing seizures during TTC and pregnancy and would try alternative/additional meds to get better control. That's if the odd seizures she is experiencing are actual epilepsy rather than anything else.

Btw, I have epilepsy myself, so I'm not unsympathetic to your sister. But she's not behaving well here and not doing the best for herself, for a potential baby, much less for the rest of you.

frumpet Sat 23-Mar-13 12:03:58

How often is she having the abscence seizures ? Does she ever have seizures when out and about , or with her boyfriend ? Personally i think it sounds like your sister has a lot of understandable issues surrounding her diagnosis . She needs real help to address these so she can have some sort of a life and move forward . As someone else has said , start keeping a seizure diary , make a note of the times and length of each seizure and the type and period of recovery . Then arrange to go with her to see the neurologist .
I wouldnt worry initially about her wanting your mum to stay with her in the group , go with it for now , let her get comfortable with the situation and then gradually withdraw to the carers side .
I think your sister is a very frightened young woman , controlling all of you is her way of dealing with her fears , she needs help to be able to deal with those fears in a more constructive way .
Do not feel guilty for not being able to cope anymore , no-one else could of done more than you have , and infact no-one else has , have they sad.

ariane5 Sat 23-Mar-13 13:00:21

Absence ones/episodes this week have been about 10 of them, its usually less prob averaging 6 a week.
Usually always when at home on waking but she has had them when out before and that is hardest to deal with. Once at the pre school she had come with me but got ill, I tried to sit her down in a quiet room but somebody kept asking what was wrong and dsis got agitated, then she was unsteady so I tried to help her by carrying her bag and she was screaming who was I and why was I stealing her bag it was awful. To then get her back home was an ordeal.

I do feel sorry for her, she has struggled dince diagnosis and I want to help her but I find it impossible to know where to start as everything that seems like a good idea to me (help with caring, speaking to gp etc) is not what she wants she wasnts to be ill at home with me/my mum to care for her but when she's well she's almost pretending she's fine, not dealing with it and going out tiring herself out so that when she's home she's ill again.

ImperialBlether Sat 23-Mar-13 13:37:23

What on earth is your sister thinking of when she’s planning to get pregnant? She can’t take care of herself, so how can she take care of a child? She can’t get up early without the threat of a seizure, she can’t bear the sound of your children, she can’t be left alone. How can she be considering having a child and why is your family not suggesting to her that she should wait until her condition is under control before she even thinks of it? What the hell is her boyfriend doing, going along with this plan?

I’ve never heard of people screaming during a seizure or even during a panic attack. It’s hard to even breathe during a panic attack; the last thing you can do is scream. Could you or your eldest film her so that the doctors can see what they’re dealing with?

What strikes me is that she is incredibly dependent on you and yet she jumps up and goes out with her boyfriend when you go home knackered. Do you ever think for a moment that she’s playing you, OP?

If your mum and sister weren’t like this, but weren’t available to help and didn’t need help, could you manage on your own? How would your daily life be?

dopeysheep Sat 23-Mar-13 13:45:12

"Do you ever think for a moment she is playing you?"
That is exactly what I have thought all the way through. She sounds masdively manipulative and selfish.
Her unwillingness to go to doctor's or medical appts or even carer's groups is actually quite suspicious. Who wouldn't want to manage their condition in order to lead a decent life?
I think you need to disengage from her control OP and focus on ypurself and your children.
Sorry if that sounds harsh but I am pissed off on your behalf you are being treated like crap here.

CouthySaysEatChoccyEggs Sat 23-Mar-13 13:47:12

Ariane - I too have been guilty of screaming at my ex that he has no right to complain as it is me having to deal with the epilepsy, Hypermobility & associated dislocations and arthritis. blush

It's NOT nice to do that, but sometimes as the ill one, if your disabilities are at a really bad point, it CAN rule your life, and you feel aggrieved at someone healthy complaining at you.

I DO apologise when that happens, but if your mum is finding it hard, then SHE needs to speak to someone outside the situation (NOT your sister OR you) to offload the stress. Maybe a counsellor. There ARE counsellors out there that specialise in helping Carers.

It's unfair to offload the stress of Caring for someone ON the person with the disability.

In that case, I WOULD and DO feel for your sister and see her side - she is being had a go at for something that she never asked for, doesn't want, and fucks up HER life.

(I KNOW it's unfair to yell back at the people Caring for you when they are offloading their stress on you, but equally it's unfair TO offload that stress on the person with the disability)

The time REALLY has come where your family needs a lot more outside involvement.

Your mum needs a Counsellor to offload the stresses if Caring got your sister.

Either your mum or sister's boyfriend NEED to give up work, or both work PT and care for your sister PT. If not, then your sister WILL just have to accept an outside Carer.

Your sister needs to think long and hard about TTC without FAR better seizure control. Uncontrolled epilepsy is just as dangerous for an unborn baby as Epilim / sodium valproate. If the seizure is bad, the baby could die.

Your sister AND your mum MUST be made to understand that due to your family's own disabilities, you are UNABLE to provide care to your sister. AND that it is NOT your responsibility to do so - you did not choose to give birth to her, and you did not choose to be in a relationship with her.

You yourself NEED some outside help. You are dealing with multiple disabilities in every member of your family, and due to your own disability you need painkillers to get through the day.

You NEED to take a step back - either take the DC's to school by bus, or let your DH drop them off. That way you aren't making yourself do reliant on your mum, and YOU are taking back CONTROL of your OWN life.

Please listen to me, your DC's need YOU to be well enough to take care if them, and you WON'T BE if this situation is allowed to continue.

ariane5 Sat 23-Mar-13 13:52:24

I have wondered in the past but that would make her an incredibly good actress, she looks and sounds terrible when having these episodes.
I can't see what she would gain? When I feel well I am happy, I want to go out and do things not pretend to feel ill and put myself in bed all day and scream so I can't see why she would do it??? I really don't know, all I know is she does want my mums house because of her illness maybe she exagerates sometimes to maintain the idea she is the 'needy' one.

I know her big fits were all genuine and I thinkthe episodes she has are too (ob I can't be 100 p cent sure) I don't understand why anybody would want to fake that?

CouthySaysEatChoccyEggs Sat 23-Mar-13 13:52:34

Your sister REALLY needs some counselling herself. Urgently. It seems like she has never got past the 'denial' stage if accepting her disability.

That's not YOUR issue though.

It would be interesting to know if her seizures got worse after your DD's diabetes dx, though. Someone upthread asked that.

It would be a big pointer to NEAD (Non Epileptic Attack Disorder) co-existing with epilepsy.

So it would be VERY important to know, as the Neuro would need to know. The treatment for that is different to that for epilepsy, but as she already has epilepsy (the tonic clonics), she would probably be on an AED, but also on an SSRI anti depressant, and referred for psychotherapy.

CouthySaysEatChoccyEggs Sat 23-Mar-13 13:54:57

It's NOT acting - it's STILL involuntary with NEAD. Honestly, it wouldn't be deliberate, or with any intent. It's a psychological response. She can't control that any more than she can control her seizures from epilepsy. (If she has NEAD co morbid with epilepsy, or even just NEAD.)

This is why a seizure diary written by her Carers is so important for her Neuro to see.

CouthySaysEatChoccyEggs Sat 23-Mar-13 13:57:04

It's really NOT 'fake'. Read up about NEAD.

And as to why she would be doing it, in that situation? SUBCONSCIOUSLY (as in, she doesn't know she's doing it) for the attention received.

It's why psychotherapy is part of the treatment. She can still HAVE epilepsy, but she can have NEAD TOO.

ariane5 Sat 23-Mar-13 13:58:27

Yes they did get worse, she said she was sure that actually her on waking 'episodes' were caused by low blood sugar and that I had a bg monitor that I MUST test her whilst she was ill.

I said no as don't want to be pricking the finger if somebody not in control and screaming but she kept on so I said I'd do it a few times when she was well. Her blood sugars were always fine (this was about a month ago) she seemed annoyed as had been convinced she had a blood sugar prob that was affecting her epilepsy.

ariane5 Sat 23-Mar-13 14:01:15

She already has anti d (citalopram) gp prescribed as she has been depressed and used to self harm.

I want to help her I can't just leave her to it but I can't help as much as she needs me to.

CouthySaysEatChoccyEggs Sat 23-Mar-13 14:04:08

My mother (VERY toxic) tries to get me to care for my brother who has Aspergers and Hypermobility syndrome.

I CAN'T do it. Yes, I feel the odd pang of guilt, but my DC's and my own crappy health HAVE to come first, and after that, I have nothing else left to give. Even doing THAT is too much when caring for 4 DC's with disabilities, with not great health yourself, believe me, I KNOW.

(((Hugs)))

I KNOW how hard it is to detach and step back in a situation like this where people try to lay massive guilt trips on you.

You need to stay strong, and walk out if they start guilt tripping you. Put the phone down if they try to do it in a phone call. Tell them to leave if they are doing it in your home. Take control and refuse to be swayed in your decision to care for your DC's and your own health first.

You are NOT being unreasonable for doing that.

CouthySaysEatChoccyEggs Sat 23-Mar-13 14:05:06

I don't think citalopram is an SSRI though - something like paroxetine or fluoxetine.

CouthySaysEatChoccyEggs Sat 23-Mar-13 14:08:05

I think you and anyone else who provides care for your Sister NEEDS to keep a very detailed seizure diary.

The fact that the seizures DID get worse around the time of your DD being dxd with diabetes, and her reaction with 'needing' her blood sugars tested points to the fact that she very possibly has epilepsy AND NEAD.

Which she NEEDS the proper treatment for. An SSRI anti-depressant AND psychotherapy AND an AED for the underlying epilepsy.

ariane5 Sat 23-Mar-13 14:09:19

I will look up NEAD I am very interested as had never heard of it before and it sounds as if it could be what is wrong.

Thankyou for being so kind and for all the supportive posts, I have been struggling for ages with all this but feel like possibly I am heading in right direction now and once have seen gp I think thatll help a lot.

CouthySaysEatChoccyEggs Sat 23-Mar-13 14:09:43

If you ever need to talk to someone. Feel free to PM me. (((hugs)))

I have to do some housework now, but I will be back on the thread later.

mum47 Sat 23-Mar-13 14:29:18

OP, I have read the whole thread. I cannot offer any advice that has not been given, but I did want to say that I think you sound like an amazing person - your posts have been calm and measured and you have not risen to the horrible and ignorant comments which have been made by some posters who have clearly not read the whole thread.

Please think about yourself. You cannot be all things to all people. Your health will suffer and you have too many people relying on you.

thanks

ariane5 Sat 23-Mar-13 14:35:45

Thankyou couthy and mum47

I looked up NEAD it does not really sound like dsis BUT I also looked up focal seizures and I am convinced it is this-it mentioned a feeling of panic,swearing, screaming and the odd swallowing she does.

Dsis just thinks she has tonic clonic and absence seizures, I will speak to my mum about it I think as she is the one who goes to appts with dsis.

Ikeameatballs Sat 23-Mar-13 14:44:13

Just remembered the way a neuropsychologist described pseudo-seizures/non-epileptic attack disorder. She said it was like blushing when you are embarrassed, a physical manifestation of stress that you cannot easily control. Does that sound like your sister?

Thumbwitch Sat 23-Mar-13 14:49:22

ariane - that's interesting about the blood sugar thing - did she come up with that idea after your DD2 was diagnosed with diabetes?
I think there might possibly be a psychosomatic element to her attacks, if so.

ariane5 Sat 23-Mar-13 15:01:05

Yes it was after dd was diagnosed, I think just because I had the means to test her that she wanted it done.

She HATES being unwell and can't come to terms with it but at other times (dm house saga for example) it suddenly becomes a really good reason for her to get something she 'needs' because she is the ill one. 99% of the time she iis distraught about it but occasionally she will use it to her advantage, I try not to let it get to me as I wouldn't want her life or to be that unwell but it can be difficult to watch DM being manipulated.

Dd2 has had a week of frequent hypos and it has coincided with dsis worst week for a while which has been the tipping point I think.

Thumbwitch Sat 23-Mar-13 15:06:38

Hmmm. I think (despite understanding and agreeing with Couthy's excellent information posts), there may well be a manipulative aspect to her illness here - your DD2 has had a very needy week, and so your DSis has had one too - I feel that she may be, consciously or not, making sure that she's still the "most ill one" who needs the most care.

She might not at all - could just be a massive coincidence - but then again...

Ikeameatballs Sat 23-Mar-13 15:07:32

Tbh I don't think it was a coincidence.

cjel Sat 23-Mar-13 15:13:28

So glad you let it all out to DH. His idea of you not going there and him taking DCs to school is brilliant. Please give it a go. You say mum needs to work for her sanity - you need to stay home to look after your family for your sanity. Don't make any more excuses about what may happen if you don't help. Your sis has knocked back any offer of help and support from outside the family and wants everything her way. It is time to stop that. You've broken down to you DH and take medicaton to try to get through your life How much more will you bear for people.What would you say to one of us if we posted all this? Pleas make yourself your priority and no more I can't because.. Its not as tough you want to sit on your bum all day - you want time to look after you precious DCs. Put them before her. No one else will.

ariane5 Sat 23-Mar-13 15:17:14

I think something is wrong but it has been for a while...

Dsis is genuinely ill I know that, I have seen it BUT on some occasions it has been too exaggerated/in response to her not getting something she wants/to get out of doing something.

She does have a lot of absence/focal seizures/episodes but it does tend to suddenly 'cluster' when somebody else is ill/getting attention.
Dd1 is very very close to our mum and dsis is insanely jealous of this-she used to be really close almost like a big sister to dd1 but as soon as my mum began paying dd1 more attention dsis gets upset that she is "being replaced" and shuns dd1. This has been hard and almost heartbreaking for dd1 who doesn't really understand, she has health issues of her own and is just a child.

I try to help everybody to enable us all to carry on in working families like DM/DH and dsis bf want to be but I can't paper over the cracks any more. Something is going on and its not all about genuine illness every single time with dsis.

I can't judge her though as goodness knows what hell she must go through when she really is ill.I also have to remember that when dsis is well and helpful to me she is lovely. I try to remeber that at the really bad times as I don't want to resent her as its not her fault she is ill.

Thumbwitch Sat 23-Mar-13 15:21:50

No, it's not her fault that she's ill but it bloody is her fault if she's milking it! Sorry, that made me cross, especially being jealous of the attention your DD1 got, that's so off.
Yes it must be hard being that ill, but still!

I think you have realised that you need to step back, so I won't keep pushing that - but your sister has to realise that her illness CANNOT be the focal point of EVERYONE around her, that's beyond selfish of her.

cjel Sat 23-Mar-13 15:24:52

It is so hard for you,your last post made me sad, it isn't fair or part of her illness to make her shun dd1, if you really think that sometimes it is attention seeking then is it any easier for you to step back and live differently. It may be good to say that it was impossible for you to give the care your baby needed when she was ill and are going to stop coming to the house as your family has to be your priority now. Don't let her make your dd1 feel sad, don't let her be in that postion. I know you don't have much but think about using your energy to make your DCs priority. If you have an easy day with DCs you could always rest or do something fun?? and not have to be chasing your tail.

KateSMumsnet (MNHQ) Sat 23-Mar-13 15:32:58

Us again,

Just a quick note to say to the OP if you want this thread moved to General Health or SN just let us know.

Big thank you to all the posters offering wonderful advice as usual.

Oopla Sat 23-Mar-13 21:42:36

Ariane, been thinking about you all day. So glad you spoke to your DH and that you posited here and can hopefully see your situation more clearly.

Time to make some changes, we're all here for you x

Oopla Sat 23-Mar-13 21:43:09

Posted*

CouthySaysEatChoccyEggs Sun 24-Mar-13 14:56:17

Hope you're feeling OK.

ariane5 Sun 24-Mar-13 23:06:32

I am ok, had a busy day so couldn't get on here till now.

Dd2 has been having quite low blood sugars today so it has been a case of watching her closely/frequent blood sugar tests as her hypos last week were horrible.

Ds2 has been grumpy all day as has a horrendous cold (never knew that somebody so small could produce so much snot!). I am feeling a lot better and am hoping to get to see gp tomorrow.
Dsis away for a couple of days with her bf so I will be able to speak to my mum properly without having to tread on eggshells as dsis won't be there, not her fault but she does not like us talking about her at all.

Dh has been lovely to me today, I don't think he realised how hard things have been for me and how exhausted I've been but I feel so much better now that he knows the pressure I have been under trying to help everybody (and failing).

FannyFifer Sun 24-Mar-13 23:45:00

Your description is like no seizure I have ever seen, I'm a LD nurse & have seen prob thousands of different seizures.

Your sister sounds like she has serious mental health issues that need to be addressed.

How does her boyfriend cope with it?

ariane5 Sun 24-Mar-13 23:50:08

They have been together roughly a year so early days but she keeps a lot of it from him I think (stays in and doesn't see him on bad days) so he doesn't see the full impact.

Her episodes seem to me like focal seizures (I read on ep action site about them yest) dsis gets odd smell thing/screaming/panic etc. Its hard to help her she doesn't know what's going on when it occurs.

nannyof3 Sun 24-Mar-13 23:57:46

Baby in playpen... Even 3 year old too... Ok, he has hypos but surely this should/could be controlled with a correct diet and medication????

Take the 11 year old upstairs with u..

Surely the house cant be that dangerous????

FannyFifer Mon 25-Mar-13 00:15:08

But how can she arrange to go away for a couple of days with him then?
If she has been unwell & having seizures all week then surely that will continue?

AmberLeaf Mon 25-Mar-13 00:47:48

1. Your Mum needs to stop putting it all on you.

2. You need to put yourself and your children first.

3. your sister sounds incredibly manipulative.

Your family appear to be using you and your good nature/need for approval to have you as their skivvy.

Put your needs first for a change before you run yourself into the ground.

Your sister sounds like the golden child and you appear to be the scapegoat.

Thumbwitch Mon 25-Mar-13 01:10:36

nanny - read the thread. DD2 was in danger of a hypo, she has unstable diabetes and is having lots of hypos. The baby has EDS with frequent dislocation. so putting them both in a playpen could have been very dangerous since the sister upstairs has been known to hang onto the OP for 10minutes at a time (enough for a hypo to become really dangerous).
Come to that, the 11yo with POT could have fainted on the way up the stairs as well.

Not good suggestions.

Jux Mon 25-Mar-13 02:29:50

Your sister sounds like a spoilt brat; sorry. Also manipulativr and unbelievably idiotic. She can"t possibly have a baby while she's like this, and expect anyone to do all this for her.

Somehow she has to be brought to see what condition she is in, and what her plans will cost evertbody else. She's sounding like a 14 yo.

Make a diary of every episode she has, with descriptions of what ovccurs, times, dates, duration etc. She can deny all she likes, but meanwhile she feels well enough to go out in the evening and you, your children and dh pay the price.

Thumbwitch Mon 25-Mar-13 05:24:04

I think once you start thinking she's manipulating the situation (which I have) you start to see other manipulative things - she "doesn't like you talking about her" - well no, she wouldn't, because you might start to realise things don't completely add up.

I know she does have a real illness - I just think she enjoys the power it gives her over you, and to a lesser extent, your mum; and she's milking it.

ariane5 Mon 25-Mar-13 07:15:32

Funny that somebody mentioned dsis acting like a 14yr old-she was 14 when diagnosed I often wonder has she got 'stuck' at that age somehow (that prob sounds odd).

It is first time she has gone away for a few days so not sure what will happen, possibly she will be unwell I'm not sure.I can see how she does manipulate things but what can I do? I can't change it its how she is now I just need to distance myself more.

ariane5 Mon 25-Mar-13 07:32:36

We do use playpen nannyof3 but ds2 dislocates easily if he falls so its not ideal, I did leave him and dd1 in there for few mins the same day as dsis was ill and left later in day which I shouldn't have as an unwell 11 y o not best to be watching a baby (and 3 y o who was playing).

Hard to prioritise somebody ends up being left when they shouldn't be. At least I don't have to worry today for the first time in ages.

CoffeeChocolateWine Mon 25-Mar-13 10:16:37

OP I think you are amazing dealing with what you deal with on a daily basis. But I think the incident last week was a blessing in disguise...it has shown you that you can't do everything and something has to give. It is totally unreasonable of your mother and sister to expect you to help your sister when you have 4 children with serious illness/disabilities to look after. And now you are in a situation where you're guilt-ridden and punishing yourself for not helping your sister when no human being in your situation would have been able to. Of course you tend to your ill child first...your children are your dependents, your sister isn't. Or she shouldn't be. Thank goodness there were't any more serious consequences but you should never have been put in the situation where you had to make a choice.

Obviously your family need help and support with this. I hope you can get it regardless of your mother/sister's wishes. This is about YOU not about them. You are the one doing most of the caring and you are the person now carrying around guilt.

I really feel for you and I wish you all the best.

TallGiraffe Mon 25-Mar-13 10:24:11

I think it will be very telling to see how well she was while away having fun. If she had far fewer of the 'attacks' then you could use that as a logical reason for distancing yourself. I know it's unlikely she'd agree but you could suggest filming one of the attacks so her neurologist could see exactly what was happening.

Good luck, I've been thinking of you lots.

frumpet Mon 25-Mar-13 11:25:09

14 is a difficult age to be diagnosed with anything that sets you apart or makes you different or requires you to take medication indefinately . Did she recieve any counselling at the time of diagnosis ?

ariane5 Mon 25-Mar-13 11:51:39

She has tried counselling but didn't get on with it-not at time of diagnosis though maybe that's the problem.

She left school and never went back due to illness, has never worked her life from that point has been about how ill she is but she can't cope with her diagnosis.

superstarheartbreaker Mon 25-Mar-13 11:59:22

YABU....what a great example you set to the kids. not.

FannyFifer Mon 25-Mar-13 12:07:20

Read the thread superstar you twat.

FannyFifer Mon 25-Mar-13 12:09:05

What did she do when you didn't come when she shouted?

ariane5 Mon 25-Mar-13 12:11:43

She screamed louder and louder and louder till it was blood curdling then started banging on the wall then stopped, I ran up to check her and she was asleep

Jux Mon 25-Mar-13 12:24:47

So she is using her illness as a reason not to do things she doesn't particularly want to do, but then rushing off to do things she does want to do?

Oh dear. She needs counselling to help her accept her dx and to help her see she's not as helpless as she thinks she is as well as to see that she cannot spend the rest of her life doing whatever she wants whilst you and her mum pick up the slack - to help her see how unreasonable she is being about who cares for her.

That, or she needs a jolly good talking to.

Someone needs to sit her down and tell her she's a grown up now and she has to face her dx fully, and if she wants to live as normal a life as she can, then she has to be completely open and honest about what is happening to her consultants and her carers, and cannot lean so heavily on you.

If you collapse from exhaustion and stress, who is going to look after her then? It might be months before you could get back to it. As her.

DowntonTrout Mon 25-Mar-13 12:25:13

I have read this whole thread this morning with growing horror. At first I though you were BU but with the rest of the information you have given I have changed my mind. I still think you are BU but for a different reason. I think that, though meaning well, you are enabling your DSIS to manipulate everyone around her. She is using her illness as a stick to beat you all with and by continuing to facilitate this you are preventing her from having to face up to the true consequences of her disability, whatever they may be. And without admitting this no one can get out of this dreadful situation you are all placed in.

I have not commented before, as I have no experience of epilepsy or the other health issues you are faced with. BUT, what I do have is experience of is my DD, with chronic asthma and various other issues, including mental health. She used her illness (es) over the years, for attention seeking, excuses and nearly drove me to a breakdown. She lied to us, some of her illness was fictitious, some not, but we never knew which. She convinced specialist consultants to perform one, maybe two operations- they can do scans all they like but if a patient is telling them something and they cannot confirm it either way, and they have enough suspicion, they operate-at least in our case they did. It is the same, but opposite of what your DSIs is doing, by not giving enough, or the true information. The doctors, to an extent, go on what they are being told.

And because she was my child, I believed her, I fought for her. I sat in more hospitals than I can remember with her crying and swearing she was in pain. I martyred myself and neglected other DCs and my DH, who along with friends, one by one, shook their heads and walked away from her. Everyone could see it but me. Her lies and manipulation got bigger and bigger to control me, and in the end, when she was caught out, I was devastated. Now I'm not suggesting your DSIS illness is wholly fictitious or that she is the same as my DD, DDs primary issues were real, but the stuff that surrounded it was psychological. Separating the two is difficult, as they are both "real" issues.

I had to, for her sake and the rest of my family, step back, and allow her to hit rock bottom. We have the luxury of distance now too, so I cannot, and do not, go running. She is pregnant, having to inject herself every day (lupus something) my heart drops when she phones as I dread it being another problem-I'm not even sure if the lupus thing is true! I fear, when the baby, my grandchild, is born that she will use it and project her issues through it. I pray with all my heart that she won't and that it will be the making of her. I don't know which it will be.

What I am trying to say, is I do understand how hard it is and probably how scared you are. It is like crying wolf. She may be ok left once or twice but what if, once, it is the big seizure, that's serious, and there's no one to help. She is an adult and while you all run around her, she will continue to live in denial about how serious her condition is. This is unrealistic and dangerous. If she is well when she feels like it, but ill when others are, then there is more going on than epilepsy and without forcing her to take steps to at least get a proper diagnosis (i kniw the epilepsy is diagnosed) and treatment she is putting everyone under a great deal of stress and herself, and maybe a baby, in danger. You have to stop this cycle. Go home and care for your own children, and for yourself, because you are not helping your DSIS or anyone else at the moment. I may sound harsh, I have become so, but there are too many likenesses to my DDs behaviour for me not to comment.

Thumbwitch Mon 25-Mar-13 12:27:07

Perhaps you could persuade your mum to get a nannycam thing set up in her room, with a live feed to a monitor downstairs? then at least whoever was there could check she was safe if they couldn't get upstairs immediately.

If she is exaggerating for effect, it would be interesting to see how people responding less would work out - do you think she would escalate the situation, or perhaps learn to cope by herself more?

Thumbwitch Mon 25-Mar-13 12:30:31

xposted, btw. Good posts from jux and DowntonTrout - Downton, that sounds horrendous with your own DD. sad

StanleyLambchop Mon 25-Mar-13 12:32:38

She screamed louder and louder and louder till it was blood curdling then started banging on the wall then stopped, I ran up to check her and she was asleep

Bloody Hell OP, can you not see that she is manipulating you? If she were having a seizure and unaware of what was going on then she would not be able to 'scream louder' and bang on the wall. She was doing that because she knew you not answered to her beck & call. She must have been fully aware of what she was doing. This really needs to stop, doesn't it?
I am not without sympathy for your Sis , my DD also has epilepsy, but we have never entertained the idea that she cannot live a relatively normal life, just making a few sensible adjustments here & there. If she were manipulating her sister in this way I would be furious. What would she do if you just stopped going over to help?

ariane5 Mon 25-Mar-13 12:34:09

She said to me last week when I wasn't there as dd2 had an appt that she had been ill on her own but "could deal with it by deep breathing as I knew nobody was in the house so even if I called nobody could come to me"

It made me a bit annoyed I said to my mum that if she can deal with it when house is empty (doesn't happen often) then why can't she do that when people are there too. I don't understand I KNOW she def does have an illness but when is it a genuine seizure or not ??

Thumbwitch Mon 25-Mar-13 12:42:20

Re-read DowntonTrout's post, ariane. Your sister does have a genuine illness, but she's made a career out of it. She has no reason not to, really - she's got you all running to her beck and call (mostly) - she doesn't have to make any difficult decisions or confront anything or actually do anything for herself because she can always play her "illness card" and you and your mum and whoever else all fall at her feet and let her get away with whatever. sad

DowntonTrout Mon 25-Mar-13 12:42:28

thumbwitch

I think you used to comment on some of my posts. DD running off with druggie, nanny college, pregnant/not pregnant, wedding/us not going to wedding etc.

I have lost her, but there was no more I could do. Maybe we will find a way through it one day.

Thumbwitch Mon 25-Mar-13 12:43:56

Ah yes! You have nc'd but I recognise your DD. So sorry sad

StanleyLambchop Mon 25-Mar-13 12:44:55

Perha[s she has been manipulating you all ofr so long that she no longer knows the difference between genuine or not?

BTW, I have never been advised (through the treatment of my own daughters' epilepsy) that it is possible to control a seizure through deep breathing. Sounds more like a panic attack to me.

ariane5 Mon 25-Mar-13 12:55:43

Downton so sorry about your dd it sounds like a terrible situation. I agree I think there is an element of manipulation from dsis, I think it stems from always being the 'ill/special' child. We lived in her shadow.

Dsis has grown up getting what she wants and if not then she says she's NEEDS a particular thing due to illness. What she gets as a disabled person in her eyes is more than she would if she wasn't ill.Her eyes light up when she talks (shows off) about her freedom pass, dla, winter cold payments,priority for council flat etc etc. I tend to ignore it but the more I think about it being ill and maintaining that ill status is her career sad

Jux Mon 25-Mar-13 13:04:19

So, she can control it when she knows she's alone. She needs to be alone a bit more then, doesn't she?

I think you may need to have quite a few fictitious appointments and tell the school to contact you on your mobile if there's a problem with one of your children. Go and have a coffee and relax. Go to a gallery, or window shopping, or something. Take some time out a couple of times a week. You really need to do that to keep yourself sane, regardless of your sis's problems.

Then you need to talk to your mum very firmly. If she can't cope with your sis's illnesses all day and runs off to work to avoid it, how does she think you can do it with all your children having such difficulties too?

And one last thought. Your children are growing up with your sister's example before them...

ariane5 Mon 25-Mar-13 13:10:28

I tried to say to my mum that if dsis CAN control it then why doesn't she do that when she knows I'm struggling with my dcs.

I'm just glad I wasn't in the same situation today as at 1040am dd2 had such a bad hypo she passed out, I couldn't have dealt with dsis as well today.

DM just made excuses for dsis saying "well, you know how it is sometimes you find the strength to deal with something if its a one off, dsis just managed today but most other times she can't as she's too ill, we were just lucky she was ok when was alone".

She almost wants dsis to be ill sometimes if dsis is horrible its not 'her' its her meds/illness/tiredness yet no allowances were made fo anybody else growing up.

I want to help but I can't help when it is like this I have no idea what is genuine or not or what is going on its too much for me.

Thumbwitch Mon 25-Mar-13 13:16:17

I have a suspicion that your mum is relying on you, Ariane, to put your foot down and say you're not putting up with it any more. She may unconsciously want you to do so, because she can't do it herself as your sis is her child and she's her mum and that's a different relationship altogether - she's probably hoping that you will say "She needs outside help, this is ridiculous, it can't go on".

I'm projecting a bit - my BIL is a feckless loser (honestly!) but MIL can't ever say no to him - she facilitates his loserishness, gives him money to go away, puts him up whenever he feels like it and does all his washing and cooking etc., because she's his mum and would feel too guilty not to. DH, otoh, has no compunction in telling the bloke to get lost. When BIL was living at MIL's for a few years (until a year ago), whenever he'd get drunk and kick off, MIL would phone DH. DH would phone the police but they wouldn't do anything because DH wasn't there. But MIL wouldn't phone the police herself until DH told her that he wasn't going to do it any more, and she could stop phoning him whenever BIL kicked off because he couldn't do anything any more.

MIL didn't want to be the one to rat out her son; she would rather DH did it. But in the end, she had to - and the court order kept him away from the house for a year, which was great!

Your mum has to take some responsibility for your sister being the way she is. And you, my lovely, have to say something like you've lived in her shadow for bloody long enough and you're damned if your own children are going to live in her shadow too!

StanleyLambchop Mon 25-Mar-13 13:18:22

freedom pass, dla, winter cold payments,priority for council flat

A 25 year old gets all that because of epilepsy? Why? There are many more debilitating conditions. She does not seem to be doing much to get good control over her condition. Has she investigated surgery as an option? There are also special diets, electrical implants similar to pacemakers. And surely if she claims she can control things through 'breathing deeply' she does not need all of those benefits. The mind boggles at her sense of entitlement.

ariane5 Mon 25-Mar-13 13:21:02

DM DEF does not want me standing up to dsis.

In 2008 after dsis was HATEFUL to me and followed me to continue the argument I stood up to her and (stupidly) slapped her cheek.
That was enough for her and DM to have me arrested and me and dcs thrown out v late at night and locks changed.

Things were horrendous for months after that. Its a lot better now and I have forgiven a lot as they are my family but I know I am way down on their list of priorities. I feel like such a doormat I wanted to help. Nothing has really changed.

DowntonTrout Mon 25-Mar-13 13:21:11

Yes,yes the special child. The illness becomes their card to hold up as to why they should be treated differently.
It is/was terrible. I still can not believe that my own child would put me through such torment.
But by stepping away, you will allow the true aspects of her illness to present itself. It may not be pretty, she may sink to more and more desperate attempts to gain attention. But this has to happen to allow her to face up to her problems.
From what you are saying now, the doubts are beginning to build in your mind, please allow them to take hold until you are strong enough to say no, you cannot do this anymore.
Let the scales fall from your eyes, as they say. It also sounds as if your DM just cannot cope anymore, she is wrong to shoulder the weight onto you, but maybe she is equally scared of what the truth maybe and just can't face it.

Thumbwitch Mon 25-Mar-13 13:22:59

Cor, they had you arrested and thrown out late at night with your children? And you went back to help them?? wow.
They're a) very lucky and b) have done a right number on you between them over the years.

Walk away, ariane, walk away. So angry on your behalf. sad

ariane5 Mon 25-Mar-13 13:24:10

If her health were to improve she would lose all that. I think maybe that scares her as she is defined by her illness and although she suffers with it she also benefits from it.

Without illness she has nothing, her place in the family was the unwell one and now she sees that her place in society is as the unwell one too.

ariane5 Mon 25-Mar-13 13:29:01

It was horrible but then again I shouldn't have lost my temper, at the time I think they just wanted me and dcs out and it was a good opportunity. DM has since said it was on dsis insistence and she had to go along with it or dsis would have left and might have been ill somewhere and nobody would have known/found her.

I have let all that go now I was hurt for ages after but try not to think about it.

I have tried to help them but I can't anymore. My mum seems scared of dsis sometimes. I can't help and I do worry about the influence on dcs especially dd1 who used to idolise dsis (untill she shunned her as thought dm was paying dd1 too much attention).

Horrible horrible situation. I am truly fed up of things how they are. Think I'm still in shock from dd2 being so ill and passing out this morn I have too much to deal with.

DowntonTrout Mon 25-Mar-13 13:31:59

I am ashamed to say my other 2 DCs lived in the shadow of DD for years. She needed me more you see. But it was never enough. She had more than the two of them put together, in every respect. But no one could tell me. It felt like the whole world was against her and I did everything I could to try and make it right for her. Maybe your DM is in denial like I was. Whatever it is, this can only continue for as long as you allow it to.

StanleyLambchop Mon 25-Mar-13 13:33:31

Without illness she has nothing, her place in the family was the unwell one and now she sees that her place in society is as the unwell one too.

That is, quite frankly, just tough shit. Who on earth holds onto a condition because of the benefits it brings them? And watches their family run ragged around them? Most ill people would do anything Not to have their condition.

She is also going to get left the house because of her 'special child' status, isn't she? Unbelievable. Please do not let her drag you down. You must bail out, but don't walk away- run for the hills. And don't go back until she is prepared to help herself.

I had a friend with long term heath problems who also had NEAD and the "seizures" looked quite real to the point that when she had them in hospital the staff were very concerned. In her case, I found talking her through some deep breathing exercises seemed to help so I was struck by the similarity with your sister's approach.

In my friend's case, its probable that the NEAD was a reaction to her long term health problems and over all deterioration, she was young and struggling to come to terms with life limiting health conditions.

My ex-SIL had a serious illness and was genuinely ill. It was noticeable that it prevented her from doing some of the more mundane things in life like washing up but not from doing those things she enjoyed e.g. driving to a cafe to meet friends. After a while, it became clear that she hadn't really come to terms with her illness (started in her early 20's) and so felt all of us "owed her something". It was very difficult because we could all understand why she was angry but it is hard when that anger is directed at you.

I really think that you do have too much on your plate and that you need to scale down your involvement, it is for others to carry a bigger share of the burden or for your sister to accept some outside help.

cjel Mon 25-Mar-13 14:08:24

sorry to hear about your morning, but see how easier it is when its only your children to take care of. Get used to it. this should be your new life.

Jux Mon 25-Mar-13 14:41:56

What do you get out of it, Ariane?

It seems to me that you feel guilty about quite a lot of things. For instance, you are not ill, your sister is. You had an argument with her (normal between siblings, really) when she was horrible to you.

I suspect that you feel you 'owe' her this care because of at least those two things.

You don't. You really, really need to concentrate on yourself and your children and your dh. You need to let whatever will be about your sis and mum to be whatever it is. But it is between them. It is not your responsibility to deprive yourself of a life so that your sister can do whatever she wants.

Walk away, Ariane. See to your own family. Those two need to work things out for themselves. Your mum isn't sacrificing her life for your sis, so why are you?

ariane5 Mon 25-Mar-13 14:53:41

I don't know why I do so much for them, a lot of it is probably guilt and although I do have some health issues its not on same level as dsis.

Part of me wants to help to make things better, for us all to be happy but I try and nothing changes.

On a practical level my mum does help me, collects dcs from school some days/helps if one dc has an app etc so I feel I have to then help her in return but its not really a fair 'swap' collecting dcs is quick and easy, looking after dsis is anything but.

Sometimes I think if I do enough then things will get better and be nicer for everybody but dsis moves the boundaries time and time again.

DowntonTrout Mon 25-Mar-13 15:37:05

You can only change things you are in control of and you can change how you react to the situation.
You cannot change others. That is for them to decide.

Jux Mon 25-Mar-13 15:52:52

And she will always change the boundaries to get what she wants. She is like a circus dog trainer who starts with one hoop, which you dutifully jump through, only to find that she's set up another one, and then another one, and then another, and so on. She will not stop, ever, because it works, so why should she?

Is her bf aware of how ill she can be? Does he know that she's trying to become pg? How does he think they will cope?

Can you have a reasonable discussion with your mum; if you take her out for a coffee, and tell her (perhaps a white lie) that your doc says you cannot do this any more? Ask her how things can be changed so that your sis has adequate care without anyone giving up work, but also so that you can avoid a breakdown and care for your own children properly? Would she understand that your children are entitled to as much care from you, and she herself was prepared to give your sis, but that you have 4, so for you it is 4 times more.

Or does your mum just see you as an unpaid carer too?

ariane5 Mon 25-Mar-13 16:33:28

Can't really talk to my mum properly she has been telling me all afternoon how ill SHE is and she's always a bit grumpy.I know she's just tired she doesn't mean it but its hard to ever talk to her.

She also is very much of the opinion that dsis is so terribly ill and doesn't like to hear anything negative about her.

I think best thing I can do is just slowly back away from it all. Had to come here as dm collected ds1 as dd1 is at hosp for physio and to see consultant with dh then we are off to gp as ds2 really poorly (ear inf I think) we just have so much to deal with ourselves that I need to concentrate on dcs.
I am so aware of not making same mistakes I know dcs all have probblems but I'm terrified of turning them into more versions of dsis. I am trying my best to make them see that despite their health issues they can still be nice and make something of themselves. Its all so worrying and confusing.

StanleyLambchop Mon 25-Mar-13 16:39:19

I am so aware of not making same mistakes I know dcs all have probblems but I'm terrified of turning them into more versions of dsis. I am trying my best to make them see that despite their health issues they can still be nice and make something of themselves

Because you are a good Mum and want the best for them. You are a nice person, but sometimes too nice. Glad to hear you are going to back away. Stay strong for your own kids!

Jux Mon 25-Mar-13 16:48:31

The very best of luck, Ariane. Your decision is putting you back into the heart of your own family. Stay strong, but rest!

PenelopePipPop Mon 25-Mar-13 16:52:21

I have epilepsy. I agree that your sister's seizures sound unusual but I'm not sure how helpful that is since even really expert neurologists can get the diagnosis of epilepsy wrong in about 1 in 20 cases - I'm very sure diagnosis by internet is not a good idea!

I'm also sure that although people who have NEAD differ from people with epilepsy due to the degree of awareness and control they have over their attacks stigmatising people with the condition by implying that it may be used as a type of manipulation even subconsciously is probably unfair. Most (about 90%) people with NEAD have a history of really horrible trauma and it seems the attacks are a way of dissociating themselves from memories of serious abuse. The awareness issue is also a bit misleading. I have retained awareness in about 90% of my seizures, because I mainly have simple partial seizures for which retained awareness is typical.

But whether she has NEAD or focal seizures isn't really relevant since you can't drag her to the neurologist, force her to disclose a full seizure diary, show videos of the seizures and demand a video-eeg which is the only way to confirm the underlying nature of these attacks. Even with a diagnosis of NEAD she will still have a complex intractable condition which will need long-term psychotherapy to have any chance of improvement.

And of course it also isn't relevant because people with epilepsy can be needy and unrealistic in the demands they place on others and manipulative and it sounds like your sister is all these things. It might be much much much healthier to move slowly but decisively away from her and focus on meeting the needs of your own small children which sounds like quite enough to be getting on with.

If that sounds really heartless it's because it is. I'm just trying to reinforce Downton's tell it like it is therapy from another angle. You cannot make your sister better. Whatever her underlying issue is you Ariane cannot fix it. You can look after your own family. You can be kind to her. But you cannot make her life OK. Only she can seek the relevant medical help and put the effort needed in to trying to get better. Because as fucking horrible as epilepsy is (and it is fucking horrible - she has my sympathy) it is her fucking horribleness to deal with and not yours.

ariane5 Mon 25-Mar-13 16:52:55

I don't feel I have any other choice, I have been happy to sacrifice my own well being to help others/go without etc but it has got to the point where I am expected to start making dcs go without the care and attention they need.

Seeing dd2 pass out today during a hypo really made me realise how much dcs need me, it was horrible and scary. The other day was bad enough but today was awful.I need to look after dcs I can't look after dsis too she commands so much attention when unwell I can't divide myself up. If her bf can make the time to go away/ go out with her her then he can make time to share the burden of caring for her too.

Jux Mon 25-Mar-13 17:03:32

Yes. And if he is planning on having a child with her, then he should bear the major burden.

Penelope, I'm sorry you suffer too. I know I was one of those talking about manipulation and Ariane's sis in strong terms. I don't want you to think that I apply that to everyone who has a debilitating illness. I am disabled myself, so I know how hard it is to try to live a normal life whilst trying to keep the impact on those around you minimal. The fact that you try to do that, and I do too, makes me perhaps angrier at those who don't seem to be making that effort than I should be.

I'm sorry I dissed your sister Ariane. i still think that you have to step away and look after your own first, though. I wish you all the best, I really do.

PenelopePipPop Mon 25-Mar-13 17:05:10

Oh bless your DD2. I hope she is OK now.

It would be even better if you could think your wellbeing counted for something here too y'know!

You might want to try posting something about this on the Epilepsy Society forums. We've occasionally had partners and friends say 'My gf has epilepsy and wants me never to work away from home. Is this unreasonable?' Often the reply from people with epilepsy is 'yes it is unreasonable of course she'll be fine.' That doesn't mean your sister's case isn't different of course, but it might be another useful perspective.

PenelopePipPop Mon 25-Mar-13 17:09:36

Hi Jux - sorry haven't gone back and read your posts but we may well agree actually. I think Ariane's sister sounds like she might well be manipulative. Just that that doesn't really tell you if her seizures are epileptic or not. Some people have non-epileptic seizures with absolutely no conscious control over them and with no manipulative intentions either. Because they get stigmatised as 'attention-seekers' they often don't get the help they need when they actually suffer very badly.

And some people who have epilepsy probably play up their seizures for attention too. My FIL has an arthritic knee that doesn't half play him up in the evenings when he wants stuff fetching for him, but is curiously fine when he wants to walk to the pub or dig over his allotment... I love him really (grits teeth).

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