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.

[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.

[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.

[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?

[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.

[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!

[Jux]

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

[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.

[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.

[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.

[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.

[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).