How do you get through finding out your whole life wasn't what you thought it was?

[MiscellaneousAssortment]

How do you lay this stuff to rest?

Over the last 5yrs I have had my life's story rewritten again and again as I uncover unpleasant 'truths' that change what I thought happened, what I thought was my life, my sisters life, my family bonds, all not true.

And I'm not seeking out those truths, or trying to delve back into the past looking for answers. It's all raked up again and again because me and DS are still paying the price for it all, and our lives literally (actually literally) depend on it.

And my sister and fathers lives did depend on it, except they're dead.

I tried all evening to write a summary and it's too hard.

Basically, found out my parents always knew about the possibility of a genetic condition being passed down. They knew before they got married.

How can someone do this? Almost five decades of lies. The very foundations of my own life and the terrible tragedies that have hit our family again and again, reeling from the shock as a genetic condition slowly reeks havoc on the people I love... The lie was that anyone else was shocked and ignorant about what was happening.

Feel like the whole thing is some sick joke, and I'm the punch line.

How can parents endanger the lives of their children (sister died, I'm now severely disabled), one of themselves (dad died), and their grand child (DS may have it too)?

My mother in particular has behaved so very badly over the years, my dad was lovely though with his own problems, but kind and gentle and caring. Not very responsible though or he'd have intervened as my mother was a horrible horrible person, emotionally abusive we'd ca it these days. I can sort of see my mother doing this more than my dad, a stretch even for her, but she does have form for being breath takingly selfish and cruel. But even so, this means she was shouting and screaming that we were making it up to get attention/ doing it to upset her, how it was my fault that the family was poor/ she didn't work/ dads job was always insecure...all the time KNOWING what was happening.

She watched and bitched as her favorite daughter went through all kinds of hell, she watched her die with no diagnosis, no treatment, just terror of knowing there's something terribly wrong and no one will help.

How? I don't understand. She loved my sister so much, and my parents fell apart when she died.

And then to watch me getting iller and iller, not knowing what was happening, not knowing where to turn. Then having a grandchild, without ever thinking to tell your daughter the risk for him.

Then dad dying, they didnt tell the docs any family history, even though he was dying of what people with my condition die of. My mother behaved unforgivably at this time, cruelly and shockingly, which I thought was to hurt me (which it was but with a double whammy of being able to stop me being able to tell the hospital the family history.

I can't even start to understand how my dad went along with this?

It's like living in a snow globe and every so often someone comes along and gives it a shake, and my world turns upside down and resettles into a completely different shape.

What do I do with this? I don't know how to think or feel...

Nettle I didn't answer another persons question up thread but I think you answered it perfectly.

Why I seem to be so much more upset with my mothers role in all this than my father:

"it takes a special kind of EVIL denial to insinuate that it is made up and attention seeking, and to turn it all around as a drama"

This.

What happened this time last year was too awful and even before the big revelation, it was already too much to bear. But it ended with my daddy dead and I have that guilt to bear too, I should have tried harder. I should have made people listen and I'll always have to wonder whether it would be different. I can't ever forgive her for doing what she did. I don't even know what she thought she was doing, how much was her breaking down, or how much was her deliberately doing it, but I cannot fucking forgive her. I was an idiot to try. Or me I guess too.

3 times they went to a&e, never said a word about family history. Then finally checked his heart then he got blue lighted to another hospital where he underwent a 15hr op. Then another. Which he came round from only to die 2 weeks later from complications they hadn't been watching for.

Hospital refused to talk to me, give me any news, and refused to listen when I tried to tell them but I should have been clearer. My father wasn't well enough to make his own wishes clear, and it was my dear mother who blocked me from getting info. The sick fucking bitch. She kept pretending she was too stressed to do anything, or that she had and the hospital hadn't actioned it, or that she had asked someone to phone me and somehow they hadn't... The excuses changed every time. And then she delighted in not telling me anything... And pretending to be completely surprised and dismissive when I was crying and fucking begging her to Tell me what was happening. And she's say ok then do it all over again. Then the telling me completely wrong stuff began. I had to rely on their next door neighbours daughter telling me what was happening. Like on the very same day she told him that he would never walk again, never, never. I got a text from NDN DD saying how great it was that he'd taken a few steps that day. Not crossed wires, the NDN has fucking SEEN it happen. Completely unrelated acquaintances were allowed in and often when the docs were talking to my mother/ father. Yet the fucking selfish cruel evil fucking bitch blocked me from everything. Even when he died I had to wait until someone in the village phoned me to tell me... Hours and hours and hours later. Just a panicked call to say the hospital had called her in urgently. Then fuck all.

I don't know how much of that was her blocking me so I couldn't tell anyone about the condition. Or how much was her 'not coping' and not meaning any of the stuff she did (yet it only affecting me she managed fine with everything else), or how much was her foul crazy evilness making sure that at the last, she was the only one there.

Afterwards she whined / bitched that those neighbours have never helped again. Like they have some kind of duty to. She decided to blame my aunt as allegedly she called them and was rude to them down the phone (she shouts, she's deaf as a post!)... Apparently that's why the NDN have completely distanced themselves. I don't know what's been going on, the daughter and me have lapsed contact too. I'd suspect both is from that awful awful time. I don't blame them at all.

So there, that's what I've been trying not to think about these last few weeks. But it's almost here. He died on New Year's Day.

How do you get past that? I don't think I can, ever, ever ever.

Bloody hell, Misc.

I knew you were carrying so much with your own health problems and all the everyday obstacles of disabled life, while making sure DS was as OK as possible and making the very best of the raw deal you were dealt.

And I've always hugely admired you for sounding as together as you do under the weight of all that.

But to realise you were carrying all this as well... Dear god.

Yy, to special kind of evil to behave like that.

How do you move past that with your mother? I don't know that anyone could. Or should.

How do you move past that as a human being? No contact seems sensible. And then the long, hard road of reprogramming yourself after the abusive relationship in which you've been trained since birth.

You've said you're worried about DS losing more people. But once freed from your mother's web of lies, it may well be that people come back into your life and you form independent relationships with them UNMEDIATED BY YOUR MOTHER.

It sounds like this has already started, although of course you're still under the influence of what the Stately Homes people refer to as FOG - Fear Obligation and Guilt.

I've just read that back and it sounds much colder than I mean. I actually don't know how to put into words my horror at her behaviour, and how much I'm rooting for you and wishing you well.

Hello Pausing, and thanks to you, now & previously too

Misc pauses to get a small Christmas sherry (too many signs in that last sentence! Glug).

It's such a ruddy mess, how do you even start sharing this tangle and rubbishness? I'm so bloody tired of fighting all the time.

First time I've told anyone what happened last Christmas. Not sure whether that's a good or bad thing.

Next two days are going to be terrible.:( He died NY day at 6pm.

You do know it's not your fault about your dad, don't you? Feeling guilty that you could have done more is a standard reaction to death, no matter what the circumstances. In this instance it has no foundation at all: even your dad was in a better position to "do more" than you, by just talking to the doctors. As for your unspeakable mother...

A grim few days indeed.

And then a new year.

With any luck, the beginning of better treatment for you, with the tests and new knowledge.

And the first small beginnings of a new life free from the coils of your mother.

Misc, . You are one terrifically brave woman.

I feel NC is the best option despite your fears about what she would tell others. Face it, she has already blackened your name for no good reason at all. You might as well be hung for a sheep as a lamb. Or lamb for a sheep, can never remember how it goes.

Bottom line is you can't control any of what she says or does, and you can't control how people respond to anything she says or does. So just do what is right for you, whatever gives you the most peace, the most freedom to be a good mother to DS.

Also, I await a flaming for suggesting personality disorder, but I have been thinking cluster B disorders. I am thinking psychopath too, however. In other words, trying to have it out with her could end up seriously doing your head in.

If the condition is what I suspect it is, ultimately if he was that fragile he would have died. Because of your mothers consistant lies and denials you can never truly know that he didnt speak to the doctors himself because when it comes to our own survival I would have assumed that he would have done what was needed to survive, and she just told you that no one knew, blah de blah.
Her actions were most probably based in shame and fear, which are unhappy yet viciously driven forces to someone so clearly unhinged from normal behaviour. But the strength you have is that you KNOW, and your son will know, and that you have the knowledge that would blow your mother right out of the water and detroy this hold she seems to have liked to hold around you.
I agree with math regarding the personality disorder. Walk away. You can tell others, but there is little point in feeding into her drama - you have had more than enough of that for a lifetime.

Oh dear OP this sounds totally overwhelming for you to deal with. So sorry.

It sounds as though your mother couldn't bear any one other than her getting any attention, and went to extreme lengths to prevent this. She sounds extremely dangerous and has caused severe harm to you and so many people you love.

May I suggest that any further contact with her at all will only do you harm. You need to be your own first priority now. For your sake and your son's.

She doesn't have anyone else. But she doesn't deserve anyone. Not after this.

I'm so sorry about the loss of your sister and your father. The pain and grief is still with you, all you can do is raise a glass to your loved ones and vow to yourself that this stops here.

Thank you very much.

It's only taken 5 pages and hundreds of complicated ramblings to narrow it down to what was probably very clear to all but me:

• NC is best (but how to do it is something I'm not there with yet, but agree)
• past history can be covered by the broad explanation of, 'bat shit crazy and it stops here'
• and yes, it stops here. I hope I can do that for him...

I would die to protect DS from living through what I had to, or rather, I would do anything NOT to die to protect DS iyswim.

Strangely, the thing that was most awful about my mothers stay wasn't her, it was the way I became which was definitely the worst thing for DS. I couldn't protect him from ME, which was a terrible terrible thing. I was horrible, snapping, angry, rude, grumpy, shouting etc. I was boiling over with hate and hurt and pain. Literally couldn't keep it in

But I do know really it's because I asked too much of myself, I couldn't squish down what she did to me past year plus squish down the new facts of what had happened. I always berate myself for not being able to get a grip and get through it somehow for my dad, my son, and way back, for my sister etc. But I do think this time, I don't blame myself so much, I asked too much of myself.

I was crying most of last night, felt lumpish and stupid all day as a consequence, I guess it's a way of being numb. But there's tonight, and the countdown to tomorrow. 6pm is when I first heard there was a problem, then a wait until the early hours for someone to tell me what I guess I already knew. Those hours will be the hardest reliving it again. I guess he actually died before 6pm though, they called my mother in around then but he'd already gone, if what I've been told is true. He was dead before anyone noticed on the ward, he'd been taken off monitoring equipment as he was 'recovering'. So by the time it had been noticed, he was past saving even if there had been anything that could have saved him (which I don't know).

How do you manage if you can't help but be 'not ok' in front of your child?

(((Misc)))

Would it help to say mummy's very sad because it's the first anniversary of when grandpa died, and being sad about it was making her short-tempered and snappy when grandma was here.

Mummy's sorry she was snappy. But it's OK to feel sad, and mummy will feel better in a few days.

Misc, it's awful and being upset is fine and so is telling your friends why. Have you anyone in rl to talk to?

My DC see me upset about my df ( he died Christmas Day a few years ago) and my DM a couple of years ago. They don't like me being upset ( 8 and 6) but I've very age appropriate and say " of course I miss them! And I will cry but it's normal - I don't want to forget them and let's have a cup of tea"
I tell them funny stories about them - I don't have any family now, save an aged uncle and another who is far too busy to even wish us merry Christmas - and we look at old pics.

Your ds - is there a group for children of disabled parents? I'm sure I saw in my docs a sign for that. Also, what activities can your ds do outside school if you can manage - to get him used to other people and making friends? As he gets older he will naturally find friends he would like to spend time with.

I have made a few friends in the area I am in, and one is a go to person for the DC, as well as their teachers through some very difficult times for us all.

If you can put some plans in place for your ds, you will give yourself time and headspace to grieve and also - could you contact PAls Re your dad? Ask for a talk with someone about your df or see what they suggest?

Keep posting:)

Right, so from what you've said about how you behaved towards your child, when actually your anger is with your mother - this illustrates perfectly why continuing to see your mother is not doing you or your son any good. You are not doing him a favour by providing him with a grandmother. She's dangerous.

Your feelings about her are so strong that you are turning them on your child because of how scared you are to get into it with this beast of a woman. Your own fury at her is understandably frightening you. But now it's spilling over into being horrid to your son. Her presence is harming you both.

This indicates that continuing your relationship with your mother will continue to harm you, your child and your relationship with your child.

Enough really is enough. I wish you luck with stopping this ASAP.

It's today.

Thinking of you.

Thank you. It's going to get harder the later it gets. Can't help but relive 'this time last year'. DS is being looked after by someone else until after dinner, so 7ish I guess. After that I'll be on my own with DS, and my grief.

Do you have anything planned for "after the wallow"?

Is it feasible to vaguely schedule yourself something cossetting, perhaps tomorrow or Sunday if energy doesn't permit sooner? So you can give yourself permission to let go today, but it's time-limited.

Fantastic just wanted to add a bit to your post.

"because of how scared you are to get into it with this beast of a woman."

I'm not sure I'm scared exactly, maybe I am but not of her as she is now. I'm in anguish, I guess, and when she is around I become a ball of pain and bubbling over with hurt... It's not aimed at DS it's more that it's not directional just fizzing out from every crack and fissure in my soul/ heart/ self. So he gets caught because that's what I become, rather than anything being aimed at him. It probably doesn't make much difference in reality, but it does to me.

It's a big shift for me this year, as normally I hate myself for not knuckling down and keeping it all in just for these few days each year. But this year, I can't stop myself being like that with her and it's so out of my control to keep the happy face nailed on, that for the first time I've decided that the 'suck it up' method is no longer a possibility.

When it was just hurting me that seemed ok (?!), but as soon as it's hurting DS it's not. I wasn't brought up to protect myself. But DS is different. Horrible that the damage it's through me not her. So need a new strategy.

It's weird giving up on a way of life I've been trying and failing at ever since I can remember. Slightly freeing and weird. I don't think I will know what it's like until I've got through today and then my sisters death a few days later.

No :( I've got a stand in carer as usual ones are on holiday, and she's nice but very flaky, so am physically incredibly stretched and all pacing and managing has gone out the window.

Oh no, so it's all on top of you at once.

Sending you all the strength the t'interweb can carry, to hang on in there till this day is done. And the next few.

It's not aimed at DS it's more that it's not directional just fizzing out from every crack and fissure in my soul/ heart/ self. So he gets caught because that's what I become

Yes, I see the difference. I didn't mean to overstep the mark and shouldn't have assumed you were scared of your m or of the fallout of confrontation. Really I meant that the power of one's own stronger feelings of anger or pain can be overwhelming, and, to some of us, alarming or scary.

Perhaps, as the hour approaches of your father's death, could you, instead of reliving it, give yourself a task to do, which would honour him? I mean set yourself something like thinking of twenty incidents when he's made you laugh, or 20 times he's supported you, or 20 times he's impressed you? Or something along those lines? So that your mind is busy, but with positive living thoughts of him. Instead of letting your thoughts take you through an experience that was bad enough when it was actually happening.

So sorry about that last typo 'living' should have been 'loving'

Handholding.

Another hand here OP. Thinking of you and hope you are as okay as you can be.

Misc am wishing you health, hope and peace, as much as possible.

I won't pretend to have the same experiences as you, but have found my own family situation to be utterly toxic and a lot of your mother's traits are unfortunately very familiar to me, so I do understand some of the complexities of your feelings and the additional torments they bring.

Thanks. Got DS asleep before collapsed.

I can't find my dad in any of this.

Just the shock after shock and waiting and desperation and being told I wasn't allowed to know anything again and again.

Being told I wasn't 'close family'. Can you imagine someone telling your children they aren't 'close enough' to know whether you're alive or dead?

Feeling like I'm punched in the stomach again and again as I realise that it's not a mistake, someone's doing this on purpose.

Am always nice, am always polite but I'm worried, I'm scared. I phone once a day, more when tormented with half calls from her to glory in the panic and the 'he's been in surgery I've been told to brace myself, he won't make it' then left. Nothing.

The nurses on the phone saying 'you'll get the same answer. If you care that much come on to the ward to visit him in person'

'I can't, I'm disabled, I'm hundreds of miles away, severely disabled and travelling in any vehicle deteriorates my condition and carers can't do more hrs or come with me. I have no one else to take care of my son so I can't get iller than I am. The only person who was there for my little boy is my dad and I don't even know if he's alive'

'oh. I wasn't aware of that. I'll see if a doctor can ring you back'
No one rings. Ever.

Repeat calls til fade. Telling them I had medical info that might be helpful to treating him. Telling them it ran in the family. 'Oh a doctor will call you back'

Thought strikes me, to nurse ' if I come, would I even be allowed onto the ward? Or turned away?'

'I can't tell you that, you'd have to try and see what happened on the day'

'So even if I come you could turn me away if my dad wasn't awake enough to say directly he wanted to see me?'

'I can't tell you that. You'd have to try'

'I can't, I'm disabled, I'm hundreds of miles away...'

Repeat til fade.

And I did get a taxi across the country, which cost £950 in the end. And made me ill for a long time after (months). Saw him for a few minutes. Hurts to think about it. Hurts to think what he said, the hope, the promises. Kills me.

Hurts to see the look in the nurses and the one (junior) docs eyes when they met me. I don't know what they were expecting but it wasn't me. The doctor literally did a double take. Maybe it was the wheelchair and sticks, maybe it was the quiet voice. Maybe it's because I'm an actual person, not some piece of scum, And I'll never know, because that was the only time I was treated like a human by anyone throughout the whole thing.

'And you're not well yourself are you?'
'No I've got x condition, it's hereditary, my sister died of it, I have it, my dad must have it in some way. I think it's important info for you to have'

'Oh, I thought it was decided he doesn't have it?' 'Well it's not that clearcut' I say trying to be polite but trying to tell them...

Breaks off as my mother pushes her way back over.

'Will someone give me info when I call please?' With my mother standing next to me. 'Oh yes of course' my mother nods and smiles. Everyone nods and smiles.

Then I'm gone. And it's like Groundhog Day. I'm the enemy, I'm screened out.

Why won't anybody help me?

When he died and my mother phoned in a state to tell me she's had a call and it was bad. Then rang off. I was desperate trying to find out what was happening (being pretty sure he'd gone, but stupid hope stupid stupid stupid)... I was told by someone that 'he was a bit poorlier'. He'd been fucking dead for hours. He wouldn't even be warm anymore. Just an ice cold empty fucking corpse. They said again he was poorly and if I came in they'd speak to me.

So if I was healthy, I'd be able to find out, be a human. But me, the disabled bitch on the end of the phone who can't be arsed to turn up, well she didn't deserve anything. Fucking poorly is he? For hours and hours and hours. Whilst my mother was apparently there the whole time I found out after. With the doctors and nurses running around after her. With a priest. With a neighbour. With support.

I had no one. Left in torment for hours and hours with no one who cared. No one to help me. No one to hug me.

The person from the village who'd given her a lift phoned me in the end in the early hours.

I was nothing, I was scum. I was not a human. All because the person who was supposed to love me wanted to grind my face in her power and my worthlessness. I got the message. She got to drive me out of her family. She got everything she ever wanted, I am broken and I hope she's fucking happy.

((( Misc )))