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

[ariane5]

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.

[PenelopePipPop]

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).

[PenelopePipPop]

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.

[Jux]

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.

[ariane5]

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.

[PenelopePipPop]

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.

[Jux]

The very best of luck, Ariane. Your decision is putting you back into the heart of your own family. Stay strong, but rest!

[StanleyLambchop]

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!

[ariane5]

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.

[Jux]

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?

[DowntonTrout]

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.

[ariane5]

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.

[Jux]

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?

[cjel]

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.

[ChazsBrilliantAttitude]

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.

[StanleyLambchop]

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.

[DowntonTrout]

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.

[ariane5]

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.

[ariane5]

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.

[Thumbwitch]

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 on your behalf. :(

[DowntonTrout]

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.

[ariane5]

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.

[StanleyLambchop]

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.

[Thumbwitch]

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!

[ariane5]

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.

[Jux]

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...