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.

[WynkenBlynkenandNod]

Ariane, please ring your GP and make an appointment or ring SS saying that you are unable to cope any longer and need help. If you don't want to ring they will respond to an email. I did this back in December (email SS )for my Mum and help did kick in quite quickly. One mother with Dementia is more than enough for me, goodness knows how you have coped with so much for so long.

[parachutesarefab]

I agree with other posters - you need some practical help. Please phone social services, and see what might be available. (You may need to keep asking, keep pushing, as cost-cutting is everywhere at the moment, but there must be some help available to you.)

If your sister is entitled to a carer, maybe you could agree that you'll still be the one to look after her when she fits - the carer could then keep an eye on your children - not necessarily do anything (if that isn't their role), but be there to call on you if there's a problem?

Do you get any respite?

My Mil is very involved in her church, and is often helping look after children / give people lifts to appointments / sit with ill adult so that their carer can have a break. Even if you aren't a churchgoer (and I'm writing as an athiest) you could go and ask if they could recommend any groups or charities that may be able to help you?

Support groups for people with (or caring for people with) your sister's condition, or those of your DCs could give you:

• people to talk to, who understand
  
• practical advice, including what help you might be entitled to
  
• practical help (my experience is children with a range of disabilities - often parents who met each other through support groups were the best babysitters for each other, as they understood, and had experience of the conditions. And babysitting doesn't have to be in the evening).
  

Please don't be afraid to ask. Friends, neighbours, and all those mentioned above. Often people enjoy helping someone else out.

In terms of AIBU? No. You did what you could cope with at the time, and no harm has been done. If you could admit to your sister what you did, that would be helpful, as you can then work out together where to go next.

A lot of childcare courses require students to have practical experience. If you speak to teachers at any local schools or colleges, they may be able to recommend a student who could come and help you out - you may not want to leave the to sort out medical issues, but another pair of eyes, another pair of hands, and someone keen to do fun things with you children could be mutually beneficial.

I hope you get the help you need, and that things get easier for your whole family.

[shewhowines]

Please, please see a doctor and tell him what you have told us.

You have coped brilliantly so far, but it's got/getting worse and your ability to cope is being stretched to the limits. Your mental health is important and you need some way of relieving the physical and mental pressure or it will come to a point where you wont be able to cope at all. (then where will you be?)

Insist (hard i know) that your DSIS understands that you are close to breaking point and you all need to get extra help, and insist that the doctor helps you too.

You must see today's crisis as the turning point where you must take action, for both your own sake and your Dc'.s and Dsis sakes

[maddening]

Do her drs think there is any way of improving her prognosis?

[aldiwhore]

I don't think YABU I think you are in an unreasonable situation, all of you, your sister included, your children, your mum and you! You are all coping as best you can.

You do need to explain to your children exactly what is happening to their Aunty, why she says bad words, how she can't help it. It will always be unpleasant for them to see, but it will not damage them if it is explained a lot... then you won't have to choose between your children and your sister, which is an impossible choice and OF COURSE you're going to choose your children!

But you shouldn't be in this situation. I don't know how a carer can help unless they are around 24/7. I have friends who have a parent with epilepsy, they've grown up with it, it doesn't phase them, as your sister is so close, your children shouln't be hidden from her, they NEED to understand. They will also know whatever bad words they overhear, though unpleasant, are not to be either judged or repeated.

I think your whole family could do with some advice on how to manage all the factors and issues surrounding you all. Good luck. x

[ariane5]

Sometimes she goes a while without having any at all then like this week has loads.

I don't like to admit to her how difficult I'm finding it as she doesn't like to feel she is a burden and I know it'll make her feel that way.

The past 2 weeks I have had a home start lady come round once a week for a couple hours on a wed but that is the day dsis bf has off work so she is never at home on a wed so the home start lady just plays with dd2 or helps me take her to preschool. They are losing the funding though so she will only be coming for another month.

[DIYapprentice]

Ariane - I don't know much about seizures. Does your DSis's seizures only scare her, or is she likely to get hurt? Because while her being terrified is not good, it's far lower down the scale than your DC's problems.

Some other steps need to be taken I think - has any thought been given to a seizure alert dog?

[ariane5]

I have heard of those dogs (and also the hypo alert dogs) but all of us except dsis are terribly allergic to dogs and cats so it probably wouldn't work out unfortunately.

I just can't manage to juggle everybodys needs, I keep getting unwell all the time as am run down and eating rubbish (had a pack of munchies for breakfast, a tin of veg soup for lunch and about 10 cups of tea to keep me going so far today). I've had 3 courses of anti b in a month and I look haggard.

Really, I just wish either my mum or dsis bf would give up work and be her carer or that my dh would give up work and help with dcs but I know neither of those options practical.

Dsis wants to move out of home soon and I know it will just end up me going to her house as she will be unwell during day but she is adamant that now or when she has dcs herself that her bf has to keep a job.I don't mind helping I really don't but there's never a break.ever.

[crashdoll]

Ariane Has your sister been assessed by social services? Does she need support in the shower etc?

Also, have you been in touch with the children's disabilities team? There is support out there. Unfortunately, you just have to fight for it.

I'm a student social worker and I have experience in a job where most of my day was spent fighting for services and also finding free resources. Please let me know if you'd like pointing in any directions or any other advice/help. x

[Crinkle77]

I think YABU. What is your sister had hurt herself when she had her seizure?

[DIYapprentice]

Ariane - NO! NO! NO! NO! No!!!!!

You do NOT have to go to her house all the time if she moves out. If your sister wants to be independent, then I'm afraid she's going to have to grow up and face the realities of her condition and deal with them. That includes being open about them, and having other people care for her.

Quite frankly she is not in a position to be choosy about the sort of help she gets.

You CANNOT run yourself ragged - you have years of caring for your own DC ahead of you.

You are a person in your own right, you have the RIGHT to have time to yourself. You have an OBLIGATION to stay as healthy as can be for your own children.

[ariane5]

But she so desperately wants a normal life, to live somewhere, have dcs of her own but she can't be on her own with a baby if she has one so already she has been saying how she will need help as she sleeps a lot during day, won't be able to bath a baby herself etc in case ill.

She tries her best to help me if she can, ob not practical stuff as she can't babysit etc but she is lovely to dcs when she's well.I do feel bad though that I'm not able to enjoy my baby but I will have to make sure she can one day cope with/enjoy her dcs.

I'm just so exhausted.I don't know what I should/shouldnt do.I just wish for a day when everybody is well and I could take the baby for a walk in the park, get a coffee somewhere and feel like a normal mum to a little baby.

[ariane5]

I sometimes wonder if my mum is so reluctant to give up work as doesn't want to admit dsis so ill she needs full time care and dsis doesn't want to admit to herself she is ill.

[spottyblanket]

Ariane: did you read mooglets post? I second what mooglet said. This is important.

[HildaOgden]

I think you are brilliant to have coped so well so far,shame on the posters who decided to completely disregard the severity of your situation.You absolutely made the right choice today,as hard as it was.

I agree with the posters that say today is the day that things must start improving.Everything happens for a reason (don't mean to sound glib),and maybe todays' close call was a final warning to get a plan in action before something totally disasterous happens.

Please re-post this in Special Needs,the posters there are experts in telling you what help is available and how to access that help.You need extra help...if your sister is entitled to get a carer,maybe you could 'spin' it to her that you want to avail of that to make it easier for you to tend to the children?

Although personally...and I don't mean to sound harsh on your sister...but I think she is going to have to face up to the reality of it.That,if you are pulled between her and the kids again,you have to tend to the children as a priority.

You had no other choice today,Ariane....please don't feel guilty.

[3littlefrogs]

crinkle77
Read the Thread. Please.

[StanleyLambchop]

But she so desperately wants a normal life, to live somewhere, have dcs of her own but she can't be on her own with a baby if she has one so already she has been saying how she will need help as she sleeps a lot during day, won't be able to bath a baby herself etc in case ill.

But part of a normal life is learning to cope on your own. Not having your family have to come round and care for your child. If she wants a family she has to try and find a way to make that happen, without impacting on your family. It would be reckless to go ahead and have a child in the circumstances, and then expect you to carry the burden of looking after her & child, when you have a family of your own. Harsh but true. If she were more willing to look at other options for her care then I could understand you wanting to support her. But her insistance on only family caring for her is totally U.

[FutTheShuckUp]

Things sound so stressful- can you speak to either your little ones health visitor or school nurse and see if they could refer you for some family support? Sounds like it would be a godsend.

[tiredlady]

I feel for you OP. I am surprised you have been given such a hard time by some on here.
Your sister's seizure activity does sound very strange though. Most people with epilepsy don't have an awareness of what is happening during their seizure. The fact that she is aware and crying out for you as she knows she is having a seizure is extremely odd indeed

[QueenOfCats]

Op I really feel for you - what a situation to be in

You're pulled all ways and this isn't fair or sustainable long term.

You're instinct as a mother is to put your children first and that's what you did. It was a split second decision, please don't be too harsh on yourself over it.

Take some of the advice given here - get your sister's neurologist to look into the symptoms that she's displaying that don't really "fit" with epilepsy. Get some outside help.

Good luck with everything Op

[OTTMummA]

I know i am going to be flamed, but i don't care.

You must tell her you won't be able to help her when she has a baby op, i mean normal help etc fine, but every day, round the clock care? NO.

She has got to see how simply ridiculous it is to have a baby when her bf goes to work everyday?! and she can not function properly.
I know there is denial with disabilities, but surely even your mum must be trying to discourage her?

It would be different if she had appropriate help and had an actual plan in place with support from SS, but to just put this all on you is incredibley selfish, so, so selfish.

What happens when you get so ill that you end up in hospital or on antidepressants?
Who will look after her? she isn't your primary responsability, she is an adult she should made to realise that this is her disability and it shouldn't be impacting negatively on you or your childrens health.
I do feel sorry for her, honestly im not made of stone, but she has to accept that it is time for outside help, there is no way round unless your mum or her bf gives up work.

[ariane5]

I understand completely but she cannot/will not accept that she will need help from her bf-to be honest I don't think I would manage helping her if+when sge has dcs of her own.

I am totally and utterly exhausted by my own circumstances but my mum is old and tired and woulkdnt have the energy to help and we have no other family nearby. I am the only person available during the day and my dh drives so he is 'handy' for lifts/emergencies.

I don't begrudge her a life or dcs I want her to be happy but I feel like its at my expense I am in no way enjoying my dcs I am existing and I feel I am missing out-what quiet moments I could have to play with ds2 (he is my last) are taken up by caring for dsis.

I just can't do ir anymore, even my sister begged my mum not to go back to work this aft but I get the feeling our mum jusr wanted to get away from the situation.

[ariane5]

And after the horrendous day we had she managed to finally get up and go out to meet her boyfriend. I know epilepsy is variable and to be fair she had slept it off but I was left feeling a bit grumpy as all I was doing was going home exhausted AGAIN.

[StanleyLambchop]

But your Mum and Sis are not in denial, your Mum is planning on leaving her house to your sister and cutting you and your brother out of an inheritance because she has epilepsy, so she is fully aware of your sisters health issues.Your sis is not trying to live a 'normal' life standing on her own two feet, she is getting a lot of special treatment. Which is fine if your Mum wants to do it, but why are you expected to as well??