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.

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.

Oh Ariane, I am so sorry to read this 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.

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/

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?

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.

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.

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.

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 for you.

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?

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.

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

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.

RTFT

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

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

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.

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?

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

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.

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.

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

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.

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.

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.

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.