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.

[3littlefrogs]

op you are not a total bitch. You are a good person in an impossible situation.

You are overloaded, and it isn't fair.

[InSearchOfPerfection]

EXCUSES ?!?!?

A 3 years old with unstable diabetes, an 11 yo who faints (so can not be left in charge of a 3yo and a 7 months old) and a 7 months are just excuses???

I am sorry but some people really need to check up on what that sort of illnesses means and how dangerous they can be.
Low sugar levels can KILL.
A person who faints whilst in care of very young children can lead to a disaster.

And all these were just inconveniences that should have never stopped the OP to go and see her dsis.

OP I have no idea what to suggest but I can tell you that you have done your best in very difficult circumstances. Don't take anyone who tells you you are the worst person ever to get to you because they clearly don't have a clue.

Have a word with your dsis and tell her about your issue. Explains you really want to be with her but can't leave your dcs because xxx. Ask her what she thinks could be done to help. Ask her what she thinks should be done if your dd has an hypo, dsis has a seizure. Or if dsis has a seizure but your 11yo has also fainted.
You need some backup plans and a better idea of what is expected from you because as it is it's just not workable.

[3littlefrogs]

staticsockmonster - the three year old could have died.

[ElliesWellies]

I'm surprised at the lack of compassion here by many posters. I have read posts by this lady before and she has faced and is facing a lot of difficulties.

OP, you clearly have far too much on your plate. You have done your best in a terribly difficult situation. It's now time to try to investigate additional support for your sister in particular. But you don't deserve to be flamed.

[ariane5]

My mum desp needs to keep her job. I told her what happened and she just said she was going back but would collect my ds1 for me so I didn't have to leave the house.

I was bf ds2 when she left that's why she asked dd1 to sit with dsis untill I'd finished as dsis had been begging my mum to stay at home. Dsis v v rarely left on her own .yes gets dla but as I mentioned before she only wants us helping as she is embarassed and depressed by her illness it is terribly sad and she can't accept it.

[StaticSockMonster]

3littlefrogs - yes and I said children should come first.
And her sister could also have died.
If OP cannot cope she needs to get help.
Do not shoot me down for having an opinion.
If OP didn't want people's opinion she's wouldn't or shouldn't have asked.

[InSearchOfPerfection]

StaticSockMonster
perhaps the OP has been doing all she could to help her dsis and still look after 4 dcs with complex medical needs.
Perhaps the OP is living in such a stressful situation day in day out that she doesn't have time to think logically about can and can't be done.
perhaps the expectations from her mum/dsis/DH/dsis bf are too high but non in the family wants to acknowledge them so the OP is left in the position whwre she has to do it because otherwise her dsis would be alone, completely alone (which isn't the case atm).
perhaps the OP is actually completely drained and lost and is asking to help and support to be able to ensure that her dsis gets the support she needs *(and she knows she can't give her).

A bit of compassion can go a long way and there is none in your post, not one bit of compassion at all.

Actually your post made me very very angry on behalf of the OP who is clearly doing the best she can.

[InSearchOfPerfection]

xpost.

I am very happy to shoot you down the same way you shoot the OP.

If you want to give an opinion or propose solutions, do so. But you don't have to be so harsh on the OP and then grumble when someone is being slightly harsh on yourself

[drjohnsonscat]

only read the OP but I feel for you. It sounds like you have a huge amount on your plate.

[ariane5]

I posted as I have NOBODY in rl to speak to. Iam either stuck in or at hosp for dcs.

Even things like leaving ds2 in a playpen worry me-we use soft travel cot as p pen but if he falls awkwardly he dislocates, there are so many factors I do not know where to start. I don't know what I'm doing every day passes in a whirlwind of blood sugar checks,hypos,dislocations,appts,running up+down to my sister etc.

I do get invaluable help from my mum when she's here after work but the daytime hours are so so difficult.I want to help everybody but today it was too much altogether.

[StaticSockMonster]

The OP asked a question, I gave my opinion.
I'm sorry that my post has made you angry but there is nothing in there that is untrue.
OP is unrealistically expected to care for four people.

I was "grumbling" for someone being harsh. I'm a big girl I can take it.

OP may I suggest that while it is relatively calm you search the Internet for what help is out there. There are lots of avenues to explore.

[StaticSockMonster]

The OP asked a question, I gave my opinion.
I'm sorry that my post has made you angry but there is nothing in there that is untrue.
OP is unrealistically expected to care for four people.

I was "grumbling" for someone being harsh. I'm a big girl I can take it.

OP may I suggest that while it is relatively calm you search the Internet for what help is out there. There are lots of avenues to explore.

[StaticSockMonster]

Wasn't grumbling. Damn you predictive text!

[InSearchOfPerfection]

ariane you need a family meeting on that.
With your mum, dsis, her bf and your DH.
So you can do an proper evaluation of what is going on and how dangerous it is for your dsis and your dcs.

I am sure that no one in your family wants to put anyone in danger. Nor that some people are having it easy on the back of others.
You are just a family with very complex medical needs and you will need some help as a family. Especially as you seem to be good at working as team and supporting each other to get the best out of a difficult situation.
Maybe some help your yourself and the dcs.
Maybe one of you (your mum?) to stop working.
Maybe your dsis needs to accept a carer, even if part time to start with.
It is just impossible to prioritize the essential needs of so many people, when there is just one person physically present.
And asking your 11yo to be carer (by holding your dsis hand, by asking to look after seriously ill 3 yo etc...) isn't good either. Too much responsibility for an 11yo.

You will need some outside agencies involved.

You do for the sake of your dsis, your dcs and yourself.

[MissyMooandherBeaverofSteel]

Have you told your sister how hard you are finding it?

You can't do this anymore, something will have to give, it will either be something serious with either your children or sisters medical conditions or your mental health, then you won't be able to look after anyone.

Please at least call SS and discuss what options there are.

[StanleyLambchop]

Op I remember your previous post about your sister. Did she not throw you out of your Mum's house once, and your Mum just stood by and let her? I am sorry but you must be such a lovely person to still try to help your Dsis despite the way she has treated you in the past, especially as you have dcs with health problems of their own.

I think your Mum & DSis have no right to expect you to prioritise helping them over your DC. Any help you can offer should be a bonus, not an entitlement.

[ariane5]

Have just had to leave dcs downstairs and help dsis she was SCREAMING for help poor dd1 had ds2 thrown at her at both of them sat in playpen, dd2 is ok playing with her toys luckily.

Dsis had my hand in vice like grip for about 3 mins whilst screaming now she is asleep again I've shut her door so dcs don't disturb her and I will go back to 10 min checks.
I know its not about me but I'm exhausted, both dd2 and ds2 need nappy changes and there's not an ounce of strength left in me.

I've sent poor dd1 up to the spare room to lie down I don't want her to feel like I do having to keep helping I said she needs to lie down and read a book and ignore any shouting/crying I will deal with everything.

[Wishiwasanheiress]

Stop a sec, some days are just bloody hard. I think some people are reading the words but not hearing u. You do this all the time. This one time u couldn't. U just reached a point. I've been there with colic. Not exactly comparable but I understand the pain of just not being able to do it one more time.

U may never need to do that again. Don't feel too bad. Ur human, not perfect. By all means put other systems in place and other suggestions but please don't put extra stress on yourself.

Today was not great, but I won't flame u. I'd rather send u a hug. Good luck tomorrow. Tis another day !

[InSearchOfPerfection]

Static your next posts are much calmer and reasonable.
And you do have a point re getting some help.

But I will repeat. There was no need to be so harsh on the OP. There was no need to play the guilt trip (How would you feel if your dsis had died when you ignore her?).

At the place of the OP, I would have felt so so bad reading your post.
And most importantly, it would have meant I wouldn't have heard your message either.

I know these are just words on screen but thinking of the person behind can be nice too.

[ariane5]

Yes in 2008 we had an argument and she threw me out. My mum said it was her illness affecting her and she didn't mean it.
I've just had to forget it and move on, I was v v v hurt and unwell for a long time it was awful.

[mooglet]

I'm not a neurologist, but I am a doctor, and your sister's epilepsy sounds a bit odd to me. Presumably she is under the care of a neurologist, and so I think she needs to get her next appointment with them brought forward. Absence seizures are much more common in childhood, and pain / screaming / swearing are not at all how they usually present. Maybe something else is going on.

And I think you did the right thing in looking after your DCs too. You are in a very tough situation.

[StanleyLambchop]

I've just had to forget it and move on, I was v v v hurt and unwell for a long time it was awful.

And who was looking out for you when you were in need of help? Second Mooglets post, Dsis needs to see her neurologist again. This should not come down to you to sort out.

[StaticSockMonster]

I didn't mean it to sound harsh but that is the risk when things are written.
My tone would have been more soothing in reality. Honestly!

I have lost my sister and I question myself every day if there was something I could have done or something I missed - but there wasn't. My sister had no health problems like OPs has.
If this was to happen to OP it might push her over the edge and she has DC to care for.

OP I do apologise if I sounded harsh to you, it was not my intention. I so desperately want you to seek help that I came across and uncaring. In reality I was trying to advise what else could have happened.
The current situation is not healthy for anyone involved.

[Inertia]

Oh Ariane- this is too much for one person to cope with. You're not just doing childcare while looking after your ill sister- you are looking after 4 people with serious - some potentially life-threatening- medical conditions, three of whom are children.

It's too much for one person to manage.

If your sister is entitled to have help from a carer, then that's something you absolutely have to consider. You can't do all this alone.

[ariane5]

Sometimes she stares blankly other times has 'proper' big fits but the most common are the ones where suddenly she screams, doesn't know who/where she is, swears, swallows v loudly its awful.

She sees a neurologist every few months.I do worry about her it is horrible to see and even worse for her to go through and she is so unhappy the rest of the time she can't accept it.

If I told her how hard I am finding it itd upset her even more I'm sure of it. I would probably be better speaking to my mum but I doubt she would stop working.