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.

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 .

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.

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?

"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.

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.

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.

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?

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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.

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.

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?

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.

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.

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...

Tbh I don't think it was a coincidence.

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.

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.