Voiceless AGAIN?!

[rosencrantz]

Huh!  I should be so lucky to be RECOGNISED as breaking.  So very much like my mother.  Nobody can tell.  Even tho we think it's tattooed on our faces!!

Anyway...I came back with the realisation that I've been trying to work through/get past all this rubbish about ME so I can function again to be the daughter/carer again when I speak to all these people.  If I come across as totally hysterical about the behaviour of the care home manager, it won't really matter to them - I'll just be a nuisance and someone to avoid - proving to the care home that I really don't know what I'm talking about.  I DID share some of my 'can't cope and this is why' with the social worker and the solicitor - the solicitor must have had plenty of daughter/carers sent doolally by institutions as he specialises in this area but - again - his role relates to my mother's welfare and not about mine.

And (just to see that there is a silver lining) I've not had to have any contact with my mother since all this crashed around my ears.  And I'm just thinking to myself that the chaotic mess I have to deal with in my mother all the time has worn me down even tho I thought I was coping with it pretty well.  I 'take on' her energy and it's pretty yuk. Hmmmm!

Well, I feel after all this writing (and the challenges in this thread to define what I'm talking about) and all the Reiki and reflexology that I've had, that I am finally beginning to feel normal again!!!

That would be so nice.

And...two and a half months to recover from a major breakdown and depression without pills and potions but sheer determination and b****y-effing-mindedness ain't bad going.  Experience (Jeez, and I've had too much of it!) will out! 

Definitely feel like I've been climbing out of the rubbish bin today.  Head feels more normal.  Body not buzzing.  Ready to bang a few heads together (maybe!)

Yippee.  (Oh please don't have a relapse!)

You know...chocolate may be bad for you - but it's been a real friend in the last month or two!!!!!

[sKePTiKal]

Glad you're feeling clearer! It's good when the incessent buzzing stops.

I have a question for you. Why is it the charitable thing to do to excuse your mother - because of AS, BPD, whatever -
and then attach shame to yourself because you're a human being and you're finding your own "breaking point"? If it was someone else besides you, wouldn't you think "oh, poor soul - what a load to carry! No wonder she's bent over double trying to do all that by herself!"

You've gotta watch out that the "stiff upper lip" philosophy doesn't go overboard, I think. I know it gets the best of me sometimes, feeling like I'm being a wussy and complaining about stuff that "normal" people just roll right through without noticing (in actuality, they don't). I still have to be reminded that compassion for myself isn't a bad thing. I think you know this, too. Knowing and doing aren't always the same thing.

This is something I have to learn to do better - for myself - too. I need to recognize when I'm getting overwhelmed and instead of just "toughing it out" I should be actively asking for help, taking a time out, giving myself a break. I like what you said about getting it all out here - and that for you, this was "letting go"; a release of sorts. I "get" that writing it out, is for you, the way you get there. 

For me, writing here has become more a claiming my own power to make the "rules" - for myself. At least now it is. Deciding what's really important to me... and sorting out what is stereotypical, cultural values that I thought were commandments written in stone... and what is really my own values or standards or rules of behavior, being, and engagement with others. I'm still waffling back and forth on some things. One thing I've decided is that there is absolutely no shame in the times I've fallen apart - or even now, when I have to abruptly remove myself from some situations. I have a very low threshold of tolerance for chaotic sensory input - especially noise and visual stimuli, but it's not a constant thing; it changes. Sometimes Walmart is enough to set me off; sometimes I actually enjoy the "circus" of a rock concert. Maybe that's a reaction to gaslighting patterns in my brain, creating a combustible concoction of thoughts & emotions, I don't know...

... as I go through this emotional convalescence and start to begin the rehab stage... I've started to see my tolerance in those situations go up; not so much of an issue anymore... but I still want to "make quiet space" to suss out all the bits I couldn't give any attention to in the speed of the activity of the moment. I think I always will - and that's not really a bad thing or a weakness.

Like it or not: what I've experienced in my life - including the emotional abuse; the traumas - does get mixed in with who I am now. I can't be EXACTLY like I was, before the trauma - but I can be MORE LIKE that. Fact is: if none of that would've happened to me... if I had a picture perfect "it's a wonderful life" life... I would still be different than I was before the trauma - and since I can't know what that would've been; and since I've worked through and cleaned out the rubbish ideas about myself (yes, there are still some dark corners to investigate in hazmat gear) I find I still don't know what I want to be when I "grow up" and (tee-hee!) it doesn't matter anymore.

WHO SAYS:
I can't fall apart about what happened - even now - so many years after the fact?
I "have to" ___________________________ (fill in the blank).
I need to stuff my wants/needs on a back burner and take care of everyone else?

Besides.
I promised myself I would finally wear purple; live a wild & crazy life - silly, gypsy-like, and "irresponsible" (HA!!) as I please - once my kids were grown and self-sufficient. It's just that the definition of those things have changed a lot since I was 18; my body needs exercise and sleep - I can't pull all-nighters anymore; and all that would've happened to me - even if none of the bad stuff did.

Definitions.
Rules.

WHO SAYS?
WHY NOT?

And where is this societal tribunal of censors, critics, judges who will slap me in stocks in the public square, pin a red letter to me, and throw dung at me? for being me?

That tribunal only exists in my fears; in my mind; in my assumptions about what other people think about me. I don't really know what they think. And other people are not avoiding me; shunning me... so maybe my fears/assumptions are wrong, ya know?

Sorry! I'm babbling away again; I'll be quiet now... I am glad you're feeling better, Rose.

[rosencrantz]

I liked all that     Thanks for saying it's OK to fall apart (and why wouldn't it be).  And wearing purple - oh, yes!

I've done quite a bit of 'sane thinking' last night and this morning.  I found myself gripped in some malevolent energy at one stage last night, thinking through the past.  I didn't notice until it had stopped and left me still reeling.  That...was...WEIRD!  But i decided I didn't want to retrace my thoughts to find out where it came up from in case I reconnected with it.  I'll leave that for when I'm feeling stronger - or when I see my Reiki healer next week.

In replying to someone else this morning I was left with a thought...

When my mother is once more dying...what will I do?  Frankly I'd like to pretend my mother simply doesn't exist and tell social services to deal with the funeral and burial.  Maybe I'll be lucky and she'll just 'go' in her sleep.  Unlikely.  It's just not her style.  (Not joking)

She's not about to let go - she keeps leaving messages for cousins - what's the matter with my daughter, why won't she talk to me, her husband can't be telling her how distressed I am or she'd call me.  She's been told that I'm not coping and hubby and I believe she is as concerned about me as much as it is possible for her to be but she can't hear that 'not coping' means 'leave me alone until I can'. 

PLUS she's now got a mental health worker to talk to about all her distress - although as far as I can tell she says she can't talk to her and doesn't share her distress so they'll just say that she's got no problems and is just manipulating me instead of daring to think the unthinkable that she trusts me and therefore DOES confide in me.  Honestly - she's just a hurt child, really, if you reach way into who she is.  And whilst, in the flesh, she'll treat me badly, on the phone she just 'freefalls'.  So I'm expected by all the professionals (and her) to take on the burden, like a rucksack, but in secret.  They all say 'see no problems'.  What am *I* supposed to do with all the stuff she confides?  Here it is - a whole new load in my arms.  Where am I supposed to put it?

The care home manager's responses meant that finally the whole thing imploded, exploded...They refused to talk to me, refused to allow me to talk to them.  When i told the social worker...(no words for this).  They wanted me to continue to have a relationship with my mother - just one that wouldn't cause problems for them. 

HOW can you manipulate a relationship to be what someone else wants for CONVENIENCE?

I made a mistake - because I allowed myself to be persuaded that I should withdraw from my relationship with my mother - a perfectly OK functioning one.  I was even getting something from it myself.  For the first time in my adult life!!! 

But if I was not allowed to talk to the care home, then my mother had to understand that she HAD to communicate with them direct.  She was hysterical.  She knew that I had withdrawn - she said later my voice was like steel.  I've had to do this at other times to save my own life.  Here I was doing it again.  Slicing through the umbilical cord.  Thwack!

I FORCED the nurses to come and be with her and listen to her.  I worked past their usual shrugging of shoulders and indifference.  (She on one phone in one ear; nurse on another line in the other!) The next day they finally allowed her to see the GP - she ended up on a variety of medications.  Finally they stopped ignoring her and belittling her requests.  Anti anxiety tablets probably mean that she really IS fine and now can ask for what she wants. 

But I can't risk making contact.  It's over.  She hasn't even done anything.  It's not her fault (for once) - well, kind of but only because of her fears and AS, not because she willed anything bad against me.  I did what I did and colluded with the 'bad guys'/persecutors to remove myself from the picture - and then realised I'd done it to appease other people's ignorance and egos.  I felt horrorstruck about that.  I wanted to hurt myself really badly.  I did phone her again but spoke only briefly when I heard someone from the care home approaching.  I felt sick to my boots. I've spoken to her once since then but again only for a minute or so because a member of staff approached.  I said I'd call back later - but I didn't.  I emailed my husband and asked him to - but he didn't pick up my email that day.  She knows she can call him.

I think I've probably written much of this before. I've come in full circle.  I've been all round the houses.  And here's where i'm stuck.  If I could say 'goodbye', I'd be happy to do that.  Seeya.  End of story. 

I can't tolerate her any more.  I can't do what I'd been doing (the meditative 'allowing it all to wash over me' telephone calls - doing my 'understanding it from an AS point of view' thing).   I've been taught well and truly not to do that.  Or else!!  Wham!!!!!! (from the care home, social worker, mental health assessor and anyone else who feels like joining in - still feeling totally humiliated about staff being told not to speak to me!)  It feels like AVERSION THERAPY.

I don't want to 'interfere' and take her away to somewhere more 'convenient' for me and my feelings - it could finish her off and she's much more happy I assume with her pills.  Plus - with our 'history' I'm not sure I could find anyone to take us!!!  She's a long way away at the moment.  Plus she needs to be properly assessed prior to a move so she gets the appropriate support she needs (not just tick the boxes stuff).

If I phone her, I can't stop her rabbiting on.  I can't stuff my ears up.  And, with her new found confidence, she wants to know about me and I have no desire WHATSOEVER to talk about my own life - she can't help being negative and creating uncertainty, undermining my confidence.  HONESTLY we had a relationship which WORKED and the bas***ds screwed us right royally and want us to have a relationship which would be nothing but damaging to me.

So that's it - I'm cut off and cut out.  And my mother feels - ?  Rejected, bewildered?  Who knows.  Probably none of those.

I can only hope that time heals in some way - that events take their course one way or the other. 

I'll just have to keep to my mantra - can't cope, won't cope.  Although it probably doesn't make sense to anyone else.

I'm thinking I should say to my cousin : why don't you tell her the truth - that I've contacted you on two occasions in the past six months in a great deal of distress, that you didn't reply and you don't want to get further involved. 

I'm reading a book about using energy to heal - golden light and all that.  I'll send some of that golden light to my mother, too.  A grey cloud for the care home manager. (Surly frown)  I know that's a bad thing to do but hey why should I give her the benefit of all my gifts - and an unfair advantage!!! 

[sKePTiKal]

S'OK... I do understand the phone calls. I have my own to deal with; do I answer this time? Is it important? Or just more of the same?

It sounds to me like you've taken all reasonable and compassionate steps to assure that she's well cared for. Her emotional state is HER responsibility; not yours. Don't know about you, but I've done all I can - and am willing to do - to teach my mom this one simple fact: children are not responsible for their parents' happiness, satisfaction with their lives, or dealing with today's flavor of feeling with and for them. It is, after all - THEIR LIFE.

I don't make those kinds of demands on my girls; it wouldn't be fair. And nothing - I mean nothing - about my mom's being who she is and why she is that way - means that fairness value doesn't apply to her and me, as well. She might have a different opinion about that, but that's OK. I decide what I can/can't do.

It's not so much "saying goodbye" for me, as it is separating me and my life from her dependence on me to help her have her own life. And I have to "leave the nest" to do this. Moving 500 miles away almost 30 years ago wasn't enough; I had to be able to learn that it's OK for her to have to figure out how to deal with her own "stuff" on her own before I was able to "reassemble" my self as a whole person - without that unwritten; unspoken obligation to "take care of her" constantly haunting me and stealing all my energy from my own life. 30 years later, I finally "left the nest"... by making my life, my self, and what I needed more important than Mom - in my life.

I don't know if that will make sense to you - but someday it will. And that someday sounds soon.

[rosencrantz]

Yeah - I do so 'get' you.   Made me smile - 300 miles - I think I'd fall off this island and be in the sea!  I met someone once whose children had all moved as far away as the US and Australia - makes you think!!!

children are not responsible for their parents' happiness, satisfaction with their lives, or dealing with today's flavor of feeling with and for them. It is, after all - THEIR LIFE.

Gulp.

I see you've had a very dependent mother, too.  It was easier when dad was alive.  But I do feel responsible now.  'If only' I could have got everyone to understand better...she was OK in the previous care home (it was shut down) because they DID understand.

separating me and my life from her dependence on me to help her have her own life.

I think your whole post is something I should 'cut out and keep'.

Thanks!
R.

[sKePTiKal]

You're welcome.

It's a really rough road - to try to do this for a parent. We never realize until it's almost too late for us - that we don't have to. The parent should've been trying to do this for us.......... and of course, it's always our fault, that they didn't.

It's really a total muck; even now - for me. But you know what? It's all going to be OK - for you and for me. It's all going to be all right. It just doesn't appear that way on the journey.

[BonesMS]

Hi R,

Is there any way you can hire a neutral health care advocate to stand in your stead with your mom for a while...long enough for you to regain your emotional and physical strength?  Maybe someone in the town where the care home is located.
I don't think it would be selfish or wrong for your mom to help with such an expense if she can.  Even 4 or 5 hours a week?

Many hugs...

tt

  

I second TT's motion!  Is there a county ombudsman in your area?  They can be a tremendous resource!  I had to involve the ombudsman in my county when the nursing home that the NWomb-Donor used to be in was doing all kinds of STUPID and CRAZY c**p!  After the NWomb-Donor died, the state, I live in, shut down the nursing home permanently and it has been torn down!

Bones

[rosencrantz]

Thanks for the thought - the system is so different here...and my mother isn't in need. I am!

I'm here licking my wounds and looking after my own needs and confusion.

If my mother is as manipulative as they claim, then she doesn't need me and I want no part of it. Or you could say they drove a wedge between us to serve their own interests. (That's the best I can do and as far as I want to go for now as far as my mother is concerned.)

I started writing this over the weekend, but kept losing my internet connection!!  But here goes with what I was writing.

Last week I had a letter from the care home - I  assumed that it finally sorted out the gross overpayment they've been imposing on us for the past year but I only managed to face reading the letter that accompanied the statement  today.

The letter should contain an apology - at least one of :

i) sorry we overcharged you
ii) sorry it has taken several months since we agreed that we had overcharged you for us to sort this out - and that it has required the intervention of social services (several times)
iii) sorry we kept omitting to respond to your enquiries throughout 2008 until social services intervened on your behalf earlier this year and again more recetly.

There's a 'refund' of over c. US $5000.  It makes us about even as I have been ignoring their invoices for the past few months (because I knew their policy is to refuse to refund - they put overpayments against future bills - what a great system!) But let's put bad manners and money-making scams to one side. (I know it's human error and nothing more intentional.)

There is ONE apology : for 'the delay in sending out this month's invoice but' - (that's ALL they are apologising about?)

'they have been attempting' - attempting?

'to sort out the figures sent to us by (social services)' Note the buck-passing.

'The problem we experienced...' And then there's a morass of words so complicated and irrelevant that it's not worth going into - even if I could disentangle its meaning. In fact, it appears to say the opposite of what must have happened!

And it finishes up by telling me that the arrears have been backdated from April 2009 'not April 2008' - although the overcharging goes back to July 2008 (my mother wasn't even there til mid-July)

I just shake my head - it makes no sense whatsoever.

Now, I'm being aware that I have no emotional issues here - my feelings, mind, heart are not involved. This is not nebulous stuff. My mother (that chameleon) is not involved. This is pure, simple administration. Clear, to the point, visible to anyone. And I can see - very clearly - that the care home manager is dealing with this in the same way as she dealt with everything else. INSANELY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

She takes no responsibility She passes the buck She is incapable of saying 'mea culpa' She uses language to confuse, not clarify (And, from past experience, she attacks if you try to pin her down to clarify the confusion)

So... Is she stupid, ignorant, frightened, incapable of doing her job, autistic (apologies to anyone who is AS), narcissistic, feeble-minded, sick, evil, mindless, lacking in intelligence, dyslexic, innumerate - ???

Just reading the letter again insenses me - because I know that she is defending herself by avoiding the truth (she writes the usual 'half truths', blinding with confusion) - and yet...I can't pin it down. She's like a child standing behind an adult sticking their tongue out at another child and going 'nyah nyah can't get me because I'm protected by the adult (any other authority figure) who can't see what I'm doing' - and if you respond to the child YOU are the one who gets it in the neck!! Except i think it's not quite that purposeful.

The accuracy of the figures is not relevant to me. It's the interaction that's the issue.

At least this 'proves' that it's not ME ie I didn't set her off - she's like this all the time in all interactions, no matter who she's dealing with or what she's dealing with. What am I missing here????? I suppose i'm missing the skills to deal with whatever it is that she's doing. I think she's completely mad.

And my own sanity is returning!!!

[sKePTiKal]

Ah yes... the ineptitude and CYA games of bureaucracy. It's truly everywhere - here in the US, too.

I'm afraid that for many institutions and businesses - what you're describing is "business as usual" - standard operating procedure. Truly, it's nothing personal. But in your case, you're aware enough to catch the stench of the "service entropy"... and yes, it's truly hard to pin down through the layers of obfuscation.

More than anything else - this is the reason for our current global economic doldrums, I believe. You don't witness the phenomenon so much in the rank & file employees - they still have some moral integrity about doing a good job, have compassion and empathy. It's the higher ups, where you'll find scary, unbelievable distortions of reality... even "cutting off their nose, to spite their face" behavior.

Been there; seen that - and am becoming a "higher up" myself, with a commitment to do things differently and not play those games.

How've you been otherwise?

[rosencrantz]

How am I?  Thanks for asking.

Up...and then completely incapacitated again - and I don't even understand why.  Every time I start to understand what's going on, I feel better and then I seem to hit the hopelessness button again.  I had some good news yesterday - under normal circumstances it would give me a boost and get me going again but today I'm physically down instead of energised. 

But some of the despair and hopelessness has lessened - I actually thought (briefly!) that it may actually be possible to climb back up out of the pit of ill health I find myself back in - but if I do - how many more times will I find myself at the bottom of another pit - that's what defeats me most.  Is it worth climbing up a greasy pole never to get free only to slide back down again?  Maybe it's become harder again because I'm on my own and have nobody to offload on.  And that fact - the disappearance of my whole support network - has seriousy shaken my confidence.  No matter how well I plan, life insists of throwing down the gauntlet and making it as hard as possible.

I may have had momentary emotioanl glitches in my life and also exhaustion - but only my mother has ever caused this kind of mental/emotional breakdown before.  At the very least I've discovered that someone like that will never change no matter how much I try to share my reality.  And yet if I know someone has AS, I can work with that.  I'm too hot and tired to think this through any more right now

There are sick people out there and sometimes you have to stay in the ring.  Back to'loyalty' again.  My teenage son tells me I'm naive.  I struggle to know what he means and yet it's becoming more 'obvious' as time goes on.  I don't seem able to fnd a different way of handling people.  Gotta go de-stress.

[Ami]

((((((Rose))))))             Love sent to you,      Ami

[sKePTiKal]

Hey Rose...

what I hear in your son's comment is that people will be themselves and look out for themselves, without a single thought of how it affects you - and it's nothing personal... in other words, it's not a judgement on you. There isn't anything to do about "them"... just take care of yourself.

Maybe I'm wrong or just hearing what applies to me, ya know? But that's what I heard.

As for the "slippery slope"... well, some days just are better than others. And you're allowed to feel exhausted, gloomy, whatever... but I'm sure that this is just part of the whole picture... and that when you have more energy, you'll be able to reach out into the rest of the picture... and it won't be as hopeless-feeling as the one part. What do you need when you feel like this?

As far as understanding "everything that's going on"... my god, what a task you've set for yourself! I don't know that we ever fully understand all that in all situations, ya know? Sometimes, I try to make myself focus on the "face value" of things... instead of looking for nefarious motives/reasons... and that puts it all into a more comprehensible picture and reduces it down to a manageable size. It's a technique I've used in tech troubleshooting... look at the just the "hard facts"... and then see if I can collect more facts about the things I'm sure of, to shine some light into "what's really going on". And sometimes, I just have to walk away from the "problem" completely, stop thinking about it, for an answer to come to me. And sometimes, I have to ask someone else to look at it, because I've been looking at it too long to see what's right in front of me... and understand it's meaning.

Hope you feel better soon!