Active discussions

Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

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:
NoMoreMarbles · 22/03/2013 22:29

When did DSis get worse? Is it due to meds changing?

I think maybe she needs to go back to see the neurologist ASAP as regardless of the Epilepsy there are obv more issues and it is selfish of her if she refuses and then relies so heavily on help whilst making you feel guilty for wanting extra support (by refusing outside help)

frumpet · 22/03/2013 22:29

Sorry i wasnt for one moment suggesting that your sister doesnt have epilepsy , just that sometimes people with chronic long term conditions also develop mental health issues , unsuprisingly really . It could well be that it is simply a case of your sister not having her epilepsy properly controlled due to the ttc issue . But is she telling all this to her neurologist or is she going in with a 'im fine' attitude ? they can only act on the information they are given by the patient .

Ikeameatballs · 22/03/2013 22:39

Your sister's symptoms sound really unusual. They might be a firm of partial seizure or they may be something called pseudo seizures where stress can cause someone to have the physical signs and symptoms of a seizure without the actual underlying changes in the electrical activity of the brain. Very careful investigation can be needed to determine what is happening especially as both problems can occur in the same patient and they need very different types of treatment.

I think your first step needs to be organising an appointment with your sister's neurologist. I would insist tat you attend the appointment so that you can explain what is happening to your sister and be sure that any advice is followed. You cannot continue as things are.

CatOnMyLap · 22/03/2013 22:39

ariane I feel very sorry for you. You clearly have a lot to cope with and I think some people on here are being a bit harsh on you. I hope things get better for you and your family soon and that you find a way to sort things out. Smile

tiredlady · 22/03/2013 22:41

I agree with frumpet. Have you decribed this type of fitting to her neurologist. Are they sure there is no element of pseudo seizures? I don't doubt for a minute that she has genuine epilepsy but she may also have non epileptic seizures as well that are more emotional/behavioural in origin

3littlefrogs · 22/03/2013 22:46

I have never come across the type of seizure you are describing. Every single patient I have nursed with epilepsy has had no awareness of the actual seizure. Plenty of people get warning signs and can feel a seizure coming on, but very quickly lose consciousness until it is over.

The thing is though, her neurologist will not discuss your sister's health with you or anyone else without her written permission.

BoulevardOfBrokenSleep · 22/03/2013 22:59

ariane, this is just madness, you have four ill kids of your own to look after, how can you be your sister's carer as well? You are giving and giving and giving, and there will be nothing left of you.

I think you need to be more selfish - your sister's desire to have a baby is something her and her BF need to work out the logistics of between them, it shouldn't involve you needing to step in as a near-full-time carer.

I don't mean to scare you, but how much use will you be to your family when your health (or mental health) is destroyed by living like this?!

cjel · 22/03/2013 23:05

I am interested to read of pseudo seizures because I was starting to wonder if she was for real. She has been upstairs in bed all day running you ragged, then can get up and go and see bf? She wants to leave home and have a baby when she expects you to come running several times a day? Yes she may be very ill but there are clearly times when it could be pseudo. Your mum sounds like she thinks its not all it seems as well if she has started to not come running. You should not worry about her being cross if you have had enough. Can't your DH step up and support you in not being her carer. This sounds awful for you and you must start to put yourself first.

HildaOgden · 22/03/2013 23:20

Have your sisters symptoms suddenly worsened since your child was diagnosed with diabetes?Did she have these types of unusual fits before that?

frumpet · 22/03/2013 23:27

I would ask your sister if you can go with her to see the neurologist so you can help explain the type of fits she is having , this will help the neurologist determine a treatment plan for her . She cannot possibly mind that surely ?

frumpet · 22/03/2013 23:29

I have seen plenty of people experience psuedo siezures , the biggest difference appears to be the recovery period following them as opposed to a grand mal seizure .

SchroSawMargeryDaw · 22/03/2013 23:30

I do think YWBU, just because you shouldn't have been in that position to begin with. It's obviously far too much for you to deal with.

edam · 22/03/2013 23:34

cjel, pseudo seizures do not mean the OP's sister is making them up. Your post reads as if you think she is. If so, please read Ikea's post again.

Original poster
ariane5 · 22/03/2013 23:41

Dsis has had these episodes since she was a child-I wouldn't say she is 'aware' of much during them she calls for me or our mum repeatedly, screams about a 'smeLl' and is very scared. Gp originally diagnosed panic attacks.

She does sleep after for a bit but not hours like after a big fit,sometimes just minutes then she's ok again.

OP posts:
blueballoon79 · 22/03/2013 23:43

I had to post on this as all I'm seeing here, Arianne, is what your mother wants (to keep working), what your husband wants (to work) What your sister wants ( to not accept outside care but to be quite content to run you ragged)

What do you want Arianne? WHat do you need?

It's time you asked yourself that and it's time you put yourself and your childrens wants and needs over everyone elses.

Just caring for three ill children alone is a massive commitment. I have two disabled children I care for alone so can empathise fully.

It appears to me that you're expected to martyr yourself to ensure that everyone else gets what they want.

It's time for a dose of reality.

You WILL end up seriously ill yourself if you carry on like this. WHat will happen then? WHo will care for your children? Who will care for your sister.

Your sister must accept that she needs outside help. Being completely dependent on you is totally selfish of her and her expecting to have a baby, which I presume she expects you to care for as well is just unbelievably selfish.

I'm sorry but it appears to me that you're being treated very cruelly.

OTTMummA · 22/03/2013 23:46

Calling out for you doesn't sound typical of an absent seizure, I'm no expert but it doesn't sound quite right, infact it sounds a lot like when my brother used to have night terrors :S

Original poster
ariane5 · 22/03/2013 23:51

I am happy to help dsis. Just not ALL rhe time. In an ideal world if I could have anything I would like to have dcs conditions more under control, to spend more time with dcs and for somebody dh/dm/dsis bf to help more which would mean one or more of them working less hours so that not everything is my responsibility.

OP posts:
Thumbwitch · 22/03/2013 23:53

Ariane - in all seriousness, your family have to stop relying on you (I mean your sister and mum) in this situation. Just imagine if you tripped and broke a leg? What would you do then? What would they ALL do then?

Your sister may want to have a baby but she has to be more realistic about it right now - she is in no fit shape to have one. She cannot care for it herself - she can't even care for herself herself - and while I defend her right to have a child at some point, she cannot do it while she has no proper care in place.

You have your own children and family. They have to take priority for you. How is it going to feel for them if your sister's future baby takes precedence in care because she can't cope? And of course the baby can't take precedence because your own children have their health issues to deal with.

Let's just take the hypothetical one step further - what if the baby has problems? then you have ANOTHER health-challenged person to deal with as well!

Enough is enough. Your sister needs another source of care. You have enough to deal with. Stop before you break down yourself, please, for everyones' (not least yours) sake.

Original poster
ariane5 · 23/03/2013 00:00

I am exhausted by it. Constantly ill on anti b and run down.

I have tried my best but today proved that I can't do it.

OP posts:
cjel · 23/03/2013 00:14

Just read my last post and you're right it did sound if I was saying it was all made up. I'm sorry its not what I meant.I do think they might have a bit of emotional trigger. I think she should go back and see if she can have better meds. I think what I was trying to say was basically that living like this is no good and OP must get her own help sorted and her s should get her support without OP.Don't think I am saying this very well but am not meaning to be offensive.

Oopla · 23/03/2013 00:56

Ariane, if you were a single woman this would be some hard kind of sacrifice to make but you have babies to care for.

Your mother should be caring for you sister. If she can not or will not give up work then she needs to arrange alternative care.

The part you mentioned about your mum not wanting to give up her job because dsis will be moving out soon. It's like the whole family is playing pass the parcel with your sister.
You have just as much right to a life yourself and your babies have a right to seeing their mother smile.

Oopla · 23/03/2013 00:58

I so so hope you enjoy your weekend with your family. Recharge if you can.

Greenshootsandleeves · 23/03/2013 02:10

Tough love required for your sister I'm afraid. She is just going to HAVE to "accept her condition", get whatever help she can and grow the fuck up a bit. She can't hold the family to ransom in this way. She simply cannot have someone to hold her hand every single time she has a absence.

You are going to end up ill and completely burnt out if you carry on like this Sad

CouthySaysEatChoccyEggs · 23/03/2013 02:36

All I can say here is to give a hollow laugh to the people who are suggesting that this family might need outside help.

Yeah, of course they do.

Doesn't mean that anywhere is actually able to offer this help though...

(Says the Lone Parent with epilepsy, hypermobility syndrome - possibly EDS like the OP's DC's, and arthritis, that has a 15yo with a list of disabilities longer than your arm including Autism and hypermobility syndrome, a 10yo just embarking on the assessment process for Aspergers, a 9yo with Autism, Chronic asthma, encoparesis and severe Hypermobility syndrome (being assessed for EDS in May due to developing complications from the HMS), AND a toddler that is 'hyperactive, probable ADHD', is being assessed for Autism in May, AND has multiple life threatening allergies...WITH NO HELP FORTHCOMING)

The help just isn't there - though all these conditions are disabling and require extra care, as do those in the OP's family, they are probably (like my family's conditions) all just a tiny smidge below the threshold for qualifying for any help with care.

It's SHIT, but it is the reality out there for many Carers. They can be caring for multiple people with disabilities with absolutely no outside support, and sometimes have their own disabilities to contend with too.

Where do you propose the money to provide this mythical care comes from?!

CouthySaysEatChoccyEggs · 23/03/2013 02:50

OP - if your Dsis is having this many absence szs then she NEEDS to go and see a Neurologist, as her meds aren't working well.

There are a number of meds available, and even more combinations of meds, that may help to control your sister's seizures better.

I think that whatever med she is on, either she needs her dose raised, an adjunct med added, or a total change of med.

When was her last Neuro appt? Are you / your mum / her keeping a seizure diary? That would help a Neuro to adjust her meds.

Is there a hormonal element to her seizures - are they worse when she is due her period for example?

I think the focus needs to be on gaining better control of your sister's seizures, as that would ease a huge strain on your whole family.

Caring for multiple DC's with disabilities is hard enough, without caring for an adult who isn't doing the best they can to manage their own disability.

You NEED to put your own DC's first. Your sister is NOT your responsibility, she is your mum's responsibility, and your responsibility is to your own DC's.

Remember - it should be you having enough energy to care for your DC's and their disabilities before you think about offering care for your sister.

Harsh as it sounds, the people dissing you on this thread obviously have no clue just HOW hard it is to look after multiple DC's with disabilities.

My first thought, on reading the OP, as someone with epilepsy, is God NO don't leave her alone, risk of obstructed breathing for starters...but in realising that you were already caring for 3 DC's with disabilities, WTF else were you meant to do?!