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.

[Jux]

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]

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]

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]

xposted, btw. Good posts from jux and DowntonTrout - Downton, that sounds horrendous with your own DD. :(

[StanleyLambchop]

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]

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]

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. :(

[DowntonTrout]

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]

Ah yes! You have nc'd but I recognise your DD. So sorry :(

[StanleyLambchop]

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]

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

[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...

[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.

[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!

[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.

[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.

[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.

[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. :(

[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.

[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.

[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.

[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.

[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.

[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.

[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?