Active discussions

Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

See all MNHQ comments on this thread

Original poster

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

336 replies

ariane5 · 22/03/2013 10:32

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.

OP posts:
edam · 22/03/2013 21:46

Ariane, you are being pulled in four different directions and that's dangerous - at some point, something might well give. You all need more support. Carers are entitled to an assessment of their needs, as much as the person who needs care is. Please talk to your Mum - this a dangerous situation and while you are clearly trying your very best, it's not safe to carry on like this, for any of you. You need to talk to social services about. And possibly a carer's charity might help you work through the options - Carers UK perhaps?

Do your sister's neurologists realise quite how serious her condition is? Have they tried lots of different combinations of anti-epileptic medicines? Sometimes if you don't shout loudly enough, they assume you are coping, and don't investigate hard enough. (Although it is equally true that medicine doesn't have the perfect answer for every single person with epilepsy, sadly.)

toomuch2young · 22/03/2013 21:47

ariane ignore the vile posters.
Sounds like an incredibly difficult and stressful situation for you.
At least by posting you have got some good advice and hopefully have some ideas of how to get help, which will likely need to be outside agencies.
Wishing you all the best.

Original poster
ariane5 · 22/03/2013 21:48

I actually said to my mum today these exact words when she came in from work:

"I can't do it anymore, dcs were unwell dsis was screaming I couldn't help them all I just can't cope with it something needs to get sorted out"

I told her I was exhausted but she said she needs to keep her job-i think she knows dsis will move out soon and if she's then given up her job she won't be able to afford house/bills etc I think she's hoping dsis bf will have to be the one to be her carer when they get a flat and untill then I'm left with all the responsibility.

I will try again speaking to her but it won't change I usedto phone her at work when dsis was really ill but it got to the point where she would say she just couldn't come home after the first few times.

OP posts:
Original poster
ariane5 · 22/03/2013 21:50

Its probably my fault too for drip feeding-im just so tired I can't even post everything properly, I should have included EVERYTHING in my op but I was in a hurry in between sorting dcs out and just wanted some perspective on things.

OP posts:
crashdoll · 22/03/2013 21:50

Your sister is not your responsibility, she has her partner and your mum. If she's willing to accept help, she could be assessed by social services. You have 4 children with complex health needs and they need to come before your sister who is an adult.

edam · 22/03/2013 21:50

Your Mum is being very unreasonable and is putting all of you in danger. She needs to sort her act out - or you have to do it if she won't face up to the responsibility. Please do talk to carers' UK - link in my first post. They will help you through the options. Just talking to someone who understands might really help!

FryOneFatManic · 22/03/2013 21:51

ariane you need to get a meeting together, DM, DSis, Dsis BF, and most of all your DH to back you up.

They need to discuss this properly. You need to highlight that if things carry on as they are, you are facing burnout and your DCs come first.

Also, if your Dsis wants a baby, she must speak to her neurologist before TTC. My ExSIL (lovely lady) once told me that some of her epilepsy drugs are incompatible with pregnancy, and her neurologist was attempting to change her medication to enable her to have a baby without causing harm to the baby.

Original poster
ariane5 · 22/03/2013 21:53

Regarding dsis medications I do know that the drs are limited what they can give her as she wants to start a family and there were issues with some of the drugs so she probably isn't on best regime to manage her symptoms but is on best regime for a pregnancy if one were to occur.

OP posts:
crashdoll · 22/03/2013 21:55

I agree with edam your mum is the one being U and as hard as it is, you have to be the one to put your foot down. x

Original poster
ariane5 · 22/03/2013 21:55

X post fryone I think that's why its not well controlled as she's not on the best drugs at present as she doesn't want to harm a potential baby.

OP posts:
Original poster
ariane5 · 22/03/2013 21:59

My mum is exhausted too - 3 times during the night she was up apparently with dsis screaming, I think work is her place to get away from it all, I can't blame her. I don't think any of us knows what to do.

I will have a look at carers link. I wish they would accept outside help even for a couple of hours just to give everybody a break. I don't like leaving her to be scared on her own but I need help to deal with everything and an extra pair of hands would make it easier for me to help everybody else.

OP posts:
StanleyLambchop · 22/03/2013 21:59

We seem to be in a wierd AIBU situation where the majority are saying YANBU but the OP keeps trying to make excuses for her Mum/dsis which then make her seem U. OP YANBU. Please listen & get help!! Your Sis is not your priority, your children are!!

OhDearieDearieMe · 22/03/2013 22:00

What Stanley said. That, and nothing else really.

Original poster
ariane5 · 22/03/2013 22:02

I just wanted to help everybody. I can't do it can I?

I will try to speak to them again I can't face another day like today.

OP posts:
FryOneFatManic · 22/03/2013 22:04

I'm sorry but it sounds to me that your Dsis needs to realise that if she wants a baby she must get some other help in. I wonder from your answers if, once a baby is born, her medication could be changed to reduce the attacks she is having, which could go a long way to helping the situation.

Point is, is she really telling the neurologist the full extent of the attacks?

ExSIL has now resigned herself to not having a biological child. Her epilepsy is severe enough that the medication couldn't be changed successfully. The number of attacks she was having every day meant she had no real life outside the house and she didn't want her mum forced into caring for her. Once she went back to her old medication she was fine, got a new job and moved out.

airforce1 · 22/03/2013 22:04

Go to your GP and get advice about what to do next time.

MNHQ
OloeufiaMumsnet · 22/03/2013 22:08

Hello there
Sorry to hear about this. do let us know if youd like us to move this thread out of AIBU
Thanks
MNHQ

Bessie123 · 22/03/2013 22:11

ariane it sounds like your life is really tough at the moment. Was it much easier with 3 dcs? I don't get how you ever thought you could cope with4 dcs with sn and care for your dsis. Did you plan for this?

frumpet · 22/03/2013 22:16

I have to say that as some others have said , your sisters fits sound a bit odd . If she is aware , they dont sound like true grand mal type fits and yet at the same time they are very different to my experience of abscence type fits , again there is little awareness during the actual fit . I hate to say this , but i am going to anyway , are you 100% positive that there isnt some sort of mental health issue that is occuring . I am not saying your sister isnt epileptic , just it all sounds very strange .

Any Neurologists out there , feel free to correct me .

NoMoreMarbles · 22/03/2013 22:20

Ariane. YANBU please get some help!

Ignore the awful things that have been said by the OP reading postersAngry

FWIW my DD has/had before meds- complex partial seizures and absences and with all forms of these types of epilepsy the sufferer is not aware according to DDs neurologist... Sounds like sleep paralysis to me (a friend had this induced by cluster migraines) and she is screaming for attention but not because she is in danger.
IMO you made exactly the right decision and your sister needs to start to think about what is best for her health RIGHT NOW rather than what sounds like selfish wants (moving out, having a baby she knows she can't care for, refusing to face her issues etc). I apologise for speaking out of turn as it is very hard adjusting to a major health decline etc I understand as I have been there with a different illness but she is 25 so not a child...

If she refuses to accept what you are saying (can't cope etc) then it basically means she cares alot less for the health of you and your DCs than you think... It is a no win situation but you need you put you and your children first.

Original poster
ariane5 · 22/03/2013 22:20

It was v difficult before but tipping point was dec when dd2 diagnosed with diabetes.

It has been awful with 4 dcs with genetic issues but that+diabetes+dsis suddenly getting worse has caused tgis crisis.

I have been run down lately so not coping as well as I could, not eating well so my own fault.

OP posts:
Original poster
ariane5 · 22/03/2013 22:22

Dsis def has epilepsy (mri confirmed) but the episodes are strange I agree, they are awful though.

OP posts:
Bessie123 · 22/03/2013 22:23

I can't think of anyone I know who could cope in your situation, tbh. I think your mum and your dsis need to discuss some alternative options for her care, it's obvious that there are too many demands on you.

sweetiepie1979 · 22/03/2013 22:24

I know you weren't been intentionally cruel. Your split. But next time you should go to your sister. Good luck hope you find your balance.

StanleyLambchop · 22/03/2013 22:28

I think the seizures are focal (partial) seizures. Quite common I believe.