Voicelessness and Emotional Survival Message Board
Voicelessness and Emotional Survival => Voicelessness and Emotional Survival Message Board => Topic started by: rosencrantz on May 30, 2009, 06:47:06 PM
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Don't know why I popped back in today - haven't been around for ages. And then suddenly realised...I should have come back ages ago. I've been struggling - really struggling - with my mother's care home. It's complete madness. It's probably not worth recounting all that has happened. Suffice to say...no, it's all far too complicated. What I'm going to do is just 'make my mark' and come back another day to try to write more.
My very first post was back in the very first days of this board. I was struggling then but I'm sinking today. I'm getting older and less resilient. I've had cancer and a marriage break up - had to leave my young teenage son behind and then found myself embroiled in social services and thrown back into dealing with my elderly 'narcissistic' mother.
A major discovery was that my family all have some form of autism and that's where all the 'narcissistic' behaviour comes from. It doesn't change the pain - but it offers a different perspective and ways of handling their pain, anxiety, confusion and rage which actually makes life a little less confusing and unpredictable and 'personal'.
I know I have greater self-esteem but it seems that once you have cracked or broken, it leaves you vulnerable.
The problems started when my mother's care home was closed down. I had never been involved in her care before but social services changed the goalposts (without ever really explaining how and why to me) and I was charged with finding a new one and helping her settle in. I only lived a four hour drive away and still recovering from cancer!!! But being a responsible kind of person, I didn't give it too much thought. Oh so WRONG!
The care home I chose, on the unofficial recommendation of the social worker, was supposed to be excellent - but not when it comes to understanding autism. It is only now that I have started to discover just exactly what was being said about my mother and myself for the first few months and the conclusions which were being drawn.
I can't write more than that about it right now.
I think I feel terrible shame - things that have happened have triggered a lot of old 'wounds' - and the irony is that I moved half way across the country to see a specialist therapist and should have had support throughout all this - but she too got breast cancer soon after I arrived and disappeared out of my life without offering me a referral. The one positive thing I can say is that I haven't once thought that it was my fault that she got ill!! That's a big step forward for me!
A Mental Health Assessor asked me to write a 'care plan' for the care home to support my mother. I think they were looking for excuses not to have to engage with it. I inadvertently gave them exactly what they were looking for with an email which didn't go down well (yet I shouldn't feel so badly as it resulted from their refusal to communicate or cooperate with me and I was cracking up under the strain).
I have been entirely open and honest with everyone about my relationship with my mother and my feelings and difficulties - too honest, too open, perhaps - been showing too much of my vulnerable underbelly which I'm told is not a good idea.
One person said that some of the problems I've had is because I see more deeply than most; and yet...I don't think that's a reason for the way I've been attacked : the care home feel threatened - their status quo, their beliefs. They don't want to change. The irony is that my son's school reacted in exactly the same way.
I refuse to blame myself. I'm 'just' a parent/adult daughter - but somehow, I know too much! Kill the messenger! Close ranks! Pull up the drawbridge! Oblivious to who gets damaged - rather in the way I react to spiders! My fear is too great to let them anywhere near me - shoot first, ask questions later!!
And I - I find myself voiceless yet again, caught in multitudinous double binds, half truths, manipulations - some of which are no doubt caused by my own fears and feelings. I don't know where to turn, who to trust, who will be on my side and who may pull the trigger and finish me off completely!!
For weeks, my mind has been racing. I haven't spoken to my mother since everything reached a total crisis - when staff were told not to speak to me!!!! Then social service colluded with the care home and they decided to 'get rid of me'. How can that possibly happen? I colluded myself for about three hours and then realised what I'd done - I'd chopped off my relationship with my mother to serve other people's egos and ignorance!!! That night I grappled with feelings of self-harm. I loathed myself with such passion! And even then the care home wasn't going to let things go. I was told that my mother was now much happier without me around (hah! They didn't make the point they'd put her on a medication guaranteed to make her comfortable and confident!) And then a letter came like a bolt out of the blue which was my final straw. It was unecessary. It threatened me. I broke.
I wouldn't mind but I never wanted to be involved in the first place. My involvement had been demanded by social services - and then the Mental Health Assessor decided to use me as a cheap consultant (I said no again and again - I don't know why nobody listened!). The care home would attack me if I asked questions and didn't let them get away with avoiding answering them (attack is another way of throwing people off the scent), they refused every opportunity to define my mother's needs - and I'm the one who has become....dare I say it...the scapegoat for everyone. Really cheap of them to do that - the one person who has no support of any kind, doesn't live near enough to keep turning up for meetings and hampered by cancer!
Those are the bare bones...all the ins and outs make it far more complicated than that but perhaps that's part of my problem : too involved in the detail and struggling to get an overview so i can communicate what has happened...but, to whom? I have a solicitor in the wings, and someone who can diagnose my mother - but (sorry for this!) what about me?! I'm the one who is damaged and belittled and shamed. I want someone to help ME!!! I want someone to help ME feel better, validate me, help me get my strength back and my mind centred and make sure all this stress doesn't bring back the cancer. It was massive stress related to my mother and son that speeded my illness on in the first place.
My relationship with my mother has also been damaged. But do i care? Probably not that much - it's a relief not to have to listen to her any more or to be involved - my only fear is how much she'll make me suffer if I ever go back in, remembering how much she made me suffer when my father died and I took a long weekend off from supporting her!! Her rages and resentments last for years! She and my husband resolve their feelings through passive-aggressive behaviour - it's the way the care home staff resolve things, too. I realise i can't cope with it - don't know how to deal with it. It's insidious and invisible.
Some people were really truly dreadful to me earlier in the year (told me to hurry up and die when they discovered about the cancer!) and I was astonished how vile people could be and not care about it!! But I have realised they are a breath of fresh air. Out and out hostility - plain and in yer face!! LOL What a relief.
My own anger probably isn't as healthy as it could be!
The support I do have is someone who practises Reiki and a reflexologist - they are both gifted healers and I feel so grateful they are in my life.
And my son, of course. Aspie tho he may be, he's a wonderful human being and I love him to bits. But I have to hurry up and get my act together as he will be coming to live with me over the course of next year as we prepare him for college and a new life. I need to be strong enough to support him and make all the connections necessary for his well-being.
I've written far more than I thought I could. (Now I've previewed it, I see it was probably more than I should have!!). But it's nearly midnight now on this side of the pond and I've promised myself I'll get to bed before the 2am and 3am vigils I've been experiencing lately.
Did anyone see Britain's Got Talent??! I gather there's been interest on every side of the pond!!
Farewell for now.
R
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hi rose,
Well aren't you in a mess! Family= brothers and sisters, aunts and uncles????? Or are you the specified caregiver here?
Is there anything about your Mother's Will that would keep you around? Otherwise I would just leave her to her friends the nurses and social workers. Does she know who she is?
I'm just 70, disabled 40 years, and 2 months ago was in my chair and hit by a car, broke my left femur. At one point the pain was such that I thought it couldn't get worse or better and I had visions of a nursing home. I have already told my only daughter that the best gift I can give her is to say to her now, that she need not feel obliged to look after me in my old age. We live 2000 miles apart and she has a life. She is my POA and beneficiary. I will just admit myself to wherever I belong and after the fact, the PPD cremation, the ashes are sent to daughter.
Life ain't all it's cracked up to be...maybe death isn't either, but then who knows?
For the last 7 years I have kept every N I know on the other side of the fence, as TOXIC to me, and life is quieter with no hassles, except blind drivers.
I don't know how I was put on to Susan Boyle, but I have played her videos time and again and she has made her mark on the world. Diversity hasn't. Susan can still go on and earn millions from her voice and will never be forgotten because of the impact she made on the world. In the long run, I think it best she didn't win...and I don't know why I say that, expect that I feel she will do all right for herself. Recording, book, movie? and she did have some hissy-fits that were too played up in the media that I just believe about ½, if that....and wonder what precedent would be being set if a hissy-fiitter became a winner. She must have been under terrible pressure.
I'd rather listen to a singer any day
....but not that Holllie kid. They say she is 12, not 10, and when she threw a fit of 'crying' today (on stage yet) there were no tears. She ought go on a soap opera...very few actors can tear up on demand. One more little Narcissist in this world.
Take Care
Izzy
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Rose.....
I think you needed to say everything you said....
and then some.
So sorry you've been struggling.
(((())))
Please remember to take care of yourself.
Mo2
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Hi Rosencrantz,
Yes! Say all you need to.
Big hugs!
tt
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Dear (((((Rose)))
Just wanted to give you a hug. You are trying to be a good person in the midst of so much chaos. My heart goes out to you. You matter, Rose.
You are valuable just b/c you are "you"
We lost so much trust in ourselves with N parents, particularly the NM.
I push myself silly. I try to be better than I should be to people who hurt me.
Keep writing.
I want to hear it all.
Love , Ami
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Rosencrantz my heart goes out to you, as a fellow nursing-home-survivor (as the responsible family member).
My situation with my mother's care was different (the awful stuff was because my sociopath brother intentionally poisoned them against me in his ultimately unsuccessful campaign to take over her life at the end...her assets were his goal).
But I do know how horribly frustrating and painful it is to be doing the best you can to shoulder responsibiity for an institutionalized narcissistic elder whom you CAN'T care for yourself, your own health and sanity strained to the breaking point by the eternal worry and stress.
And the scapegoating. I felt that at times too.
Mom's been dead since the end of March. I am still trying to recover.
All I can say to you is you must STOP.
You can literally give your life to try to smooth the very last, penultimate chapter of an elder, and particularly when that elder takes it for granted...
I think we shouldn't.
I think you should stay away. And focus your therapy in every possible way on RELEASING your mother to her destiny and REBUILDING your health and your own life.
It's the right thing to do. And somewhere, in the deep cells and synapses where your mother does wish you well (and I believe a part of every mother does, even if just biologically) --
She would want you to save yourself.
Her personality and disorder and lifelong habits are not nurturing or helpful to you.
Release all that too...it's all gone when she is.
Instead, turn to a much larger mother force, let it come from within you, not from her (she can't). Turn to that force within yourself and MOTHER YOU.
You must have your own mothering now, to rebuild your health and save your life and build a hope of some long and happier years.
You can still do that.
But only if you take your own life as a precious, beloved thing that you would be doing wrong to allow to deteriorate any further in this hopeless quest to make her last few pages a happy ending.
You can't do this for her. She has her own work now and whether she ends with grace or not...it is no longer a burden you can carry.
You really must release her -- and yourself. And know, deep inside, that it is right to do so.
(Never mind what anyone thinks. ANYONE. This is you answering to the force of life which is much, much wiser than a family, a nursing home, a reputation -- all those strangling assumptions about what we must do and who we must be.)
You must LIVE and heal yourself.
That is your job, that is your deepest responsibility.
It goes deeper than your mother's life.
love,
Hops
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Thank you! You've all made me sob buckets - but in a good way, a kind of relief/release. Ami - You started it! :-) By saying 'You are trying to be a good person in the midst of so much chaos'. There, I'm off again! That really got to the heart of it. Yes, I'm a small child crying 'I do what me told', bewildered by my mother keep changing the goalposts, 'gaslighting', never satisfied. I'm always wrong, never right, tested beyond what I can cope with. I understand all that now - my husband behaved in the same way. I still find it difficult to know how much is the autism and how much is personality or 'difficult behaviour' but I see in my son the confusions and misunderstandings which stem from the autism and just how difficult it is to recognise that he's really trying but just getting it all wrong. The care home keeps telling me that my mother is manipulating me. She's a total pain but I do understand what's going on underneath the behaviour and I'm trying to communicate that to them - they just don't want to know. She tells me I'm the only person who understands her and I'm sure it's true but...that doesn't make her nice to me or help to make my life easier. (ironic laughter)
Why should I protect my mother when she's spent her whole life being destructive towards me? Partly I'm just so sorry for how truly vulnerable she is - locked in that confusion of autism, not understanding why the rest of the world responds to her in the way they do. She didn't have the opportunity of diagnosis, information, the internet that I've had, that my son has had. And yet...I think she's far stronger than I am in many ways. Distressed by so much, yet oblivious to so much.
Izzy - Thank you for sharing your story. No - I'm the only living relative, other than cousins who live scattered around the country. I've recently been on a retreat with older women - they are all so strong and vibrant - it was an honour to meet them and know that it is possible to be so independent in old age - just like you. Great role models - unlike my mother who is hugely dependent on me and always has been. I've shunned her dependency for most of my adult life (using 'tough love') because it was a case of 'my life or hers' and I knew what I had to do, particularly as she gains her strength from me in unhealthy ways - a real energy vampire.
But my father died in 2003 and everything changed. At the same time as she wanted me and needed me (and I was willing to support her and do what she wanted), she fought me tooth and nail - and drove me into depression and breakdown. I've been clawing my way back up ever since but life just won't 'let up'!!! I had just enough time to sort out my son and my husband and made a huge life change to send cancer packing, only to find myself at the beginning of the circle again!! How did that happen?
I've put back on all the weight I lost last year (3 stones - I know I'm eating to protect myself but I just can't stop!), sleeping patterns are cr** again, my days are spent at my computer instead of in the fresh air, earning money from my business or creating a new social life. Even my 'best friend' suddenly disappeared from my life. And I feel so exhausted (again!) All that effort to rebuild my life gone down the pan in the blink of an eye. I just don't know HOW to start again. I don't have the energy. I just keep struggling trying at least to tread water and then feeling hopeless when I realise what a pickle I'm in - and then I feel fear that this isn't good for staying alive and then it just goes in a circle of hopelessness (as well as voicelessness!).
So I hear you, Hopalong. One thing is true - I no longer feel I've failed my mother and I think I won't feel guilty when she dies. I think. At the beginning of the year, we thought she was dying and I was devastated. I felt such failure. I no longer feel I have failed. In reality, I probably have failed. But at the time I did everything I could (limited tho it was) - wait for it, this is a real bummer - to bring her back to life (selfishly) so I could fulfil...(these words come to mind) my destiny. I'm shaking my head here!! But I 'needed' to help her be heard and understood. Actually 'all' I did to support her when she was dying was ensure she had visitors (which she doesn't normally have) and phoned more often - but it did make a huge difference to her state of mind. She was dying out of despair and hopelessness and I didn't see why she should die out of misery. But what's been proved is that I can't make other people understand her - because they are wilfully closed to doing so. So then the question arises, should I move her? (I don't even want to go to that thought right now)
But, you know...who's going to be there for ME when I'm old and needy? The huge dependence my mother has on me...I've never even thought of doing that to my son. But the older I get, the more I seem to be turning into her! I needed to get free from my husband in part because he was turning me into someone I didn't want to be : hugely dependent. And I feel I've had my comeuppance in all that has happened because I AM dependent again - I phone him up to sob down the phone : sometimes he helps and sometimes he makes me feel worse. LOL. I always resisted doing that with my mother because she always took advantage of it - she gains strength from other people's dependence. Both of them are very debilitating in that way. I've probably pushed my son towards too much independence as a result (but I'm not sorry because he seems the most balanced of all of us and I WILL accept responsibility for that!!) I feel glad that I gain strength from helping others become INdependent - tho sadly aware that it leaves me lonely and alone if I do that with every relationship!!! I have tried to concentrate that into my work but I don't seem to have the skill recognised for what it is. Independence means my staff don't need me and they forget all the input I had in getting them there. I didn't think it mattered but I'm beginning to realise that it does!
I digress - or not! I guess I'm saying life is very confusing and I haven't got much of it left in which to get it sorted. As time marches on, yet another mistake leaves so much less time in which to patch things up. If it takes 20 years to realise that a relationship has been a complete lie, 22 years to build a friendship that blossoms and then just as suddenly dies...I just haven't got that amount of time left!! I met someone here on the forum and I really appreciated her friendship which continued after I left this forum, then one day 'poof' she disappeared. Everything dies.
teartracks and Motherof2 - thank you for being so supportive and encouraging me to continue.
I'm afraid i did!! ;-)
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I am stubborn, I am angry, I feel humiliated. I have been rejected. I was devastated (an understatement) realising that I had obediently done what was expected of me, with good heart and good intentions - and a lot of intelligence and learning - and exposed my mother and myself to people who had no intention of responding positively. It isn't right! (So what?!) I worked so hard and got a slap in the face when I expected (groan!) a pat on the head and everyone to faint and marvel at how brilliant I was. Jeez! I can't really go running to anyone to say 'I'm a little girl and the nasty people hurt me' even tho I think that's what's in me at the moment!!
I do know that what I produced for the care home was something which gave my mother enormous joy. I read part of it over the phone to her - I wanted to make sure I'd got it right. She was thrilled. She had been crying when I called and I was reluctant to share it at that point as she was already stressed and emotional. But she was overjoyed and so happy. But the care home has refused to use it, to allow her a copy. Somebody said I'd given her a gift of understanding which can't actually be taken away. They might refuse to use it but she knows she was truly understood, if only by me. And it'll be in her subconscious even if she's forgotten it by now.
Part of the problem is that she acts so competent when I'm NOT there. And acts all innocent when she's creating trouble. Or so it seems. It makes me feel angry until I remember that my son would be exactly the same in appearance...but he really did need the smallest thing explained to him, he had no intuitive grasp of anything. So I have to recognise that my mother is probably the same. It seems she is forever ready to discredit and belittle the only hand that feeds her so I feel on a knife edge all the time : I could claim something and fight hard for it only for her to undermine it all and make me look stupid and a control freak.
But it seems it's because she can't take responsibility for what she wants and needs - she wants me to fight for it for her but enable her to have it without the fear that accompanies receiving it. There are always, for her, consequences too major to face. She is a very, very frightened person, I have discovered - and she hides it well. Quite often she hides it by harming the person who wishes to help. Someone who wishes to help will always be open and vulnerable and she can't help using that to empower herself. It's so sad. And then I see the pattern : victim becomes persecutor; rescuer becomes victim - one stops thinking 'sad'. It's very, very BAD!
But, it seems, with understanding comes more responsibility. I understand therefore I must protect. I read her diaries - sorry, but I did and it helped - I came across an incident I remembered where she'd got a whole load of people dancing to her tune and then pulled the rug from under them all...for once I hadn't been involved except as a recipient of information so my emotions weren't in play. Truly, she was completely oblivious of why people were cross with her. There was not a single glimmer of a gloat at what she'd done. She is just permanently 'in the moment'. I always said my husband and son had no sense of 'context' and apparently this is an autistic trait - I think this is the same kind of thing in my mother.
The nurses respond by playing some kind of cat and mouse game with her - I had just started to become aware of it when they turned on me and I ended up the victim instead so I hadn't had time to quite put my finger on it. They know how to really upset her and some of them go out of their way to do so. They ignore her concerns. They believe she is attention-seeking and makes up stories. They have her down as manipulative and someone who is not a credible witness of her own experiences. In one sense that is true but only because she has difficulty expressing what she needs to have understood. But if nobody believes her when she is telling the truth as accurately as any of us could, what else can she do except express herself via 'manipulative' means. She 'demonstrates' her weakness or illness and of course it looks manipulative (and drives me nuts with irritation!)
For example, a man turned up in her room in the middle of the night, waking her by knocking something over - and the nurses refused to believe it had happened when I (and the social worker) spoke to them about it. It was proved ultimately that what she described actually had happened (another resident, a 'wanderer' who had previously lived in her room). But i think that was their last straw : I forced a formal investigation because I wouldn't accept their refusal to believe her - as it happened I innocently prevented them from ignoring me as they usually do by writing about related concerns to a mental health support worker who was visiting her. Boom! I got the investigation, proof that my mother didn't make up stories but...not the mea culpa or the door opening a crack so we could properly work on ensuring she was listened to appropriately. :-(
I remember that a few years previously she had driven a lot of people to distraction by keep getting herself taken to the Accident and Emergency - she was trying to get a health concern listened to. I got the impression she was treated as a malingerer and attention-seeker. But one day....the consultant said 'you need an emergency operation. You can't go home because you'll die if you don't have an operation right now'. Blimey! She'd had some kind of hernia and nobody had spotted it. The same reaction from the professionals - and it's DANGEROUS.
I had a conversation with the care home manager in which she said all sorts of negative things about my mother and her relationship with me. I phoned another day because it all seemed so nebulous - and she completely denied that she'd said ANY of those things - even things she'd been saying for months. Now I'm beginning to fall off the edge of the cliff. Why would she do that? And she couldn't provide any evidence for some of the things which she agreed that she'd said. It was almost as tho she was a voice for the nurses - she had no thought, no brain involved in what she was saying : In what way is my mother manipulative? Oh like all elderly people. Yes but in what way. Oh pulling on your heart strings. Yes but what about my mother - in what way is SHE manipulative. No answer.
I was also blamed for being the cause of upset amongst the staff. Another Achilles heel of mine. People upset because of me? Oh, noooooooo. I must repair things. Maybe I should try 'yippeeeeeeee' for a change - they're listening and they're ready to change even if they don't know it - now let's stick the knife in and twist it a bit. They may never talk to me again but why should I care? They're not my friends either way and I'll never even meet them again unless I visit the care home. But what do they mean 'upset' - WHY are they upset? No answer. The fact is that my every attempt to elicit information or offer interpretation was passed on to care workers by the manager in a way which blamed and pointed the finger whereas I went out of my way to say 'no blame' and was ALWAYS rewarding to anyone who came into my mother's room to offer her care and support. They were just totally paranoid - or stirrers. Or...there is one other thought in my mind which I will share and risk 'seeing reds under the bed'...it could be that the care home manager has autism too - or perhaps she's just driven to destroy. It's not part of my nature (in spite of offering to turn the knife above!) so I just don't 'get' that people could really be so destructive.
Me? I just want to play. I'm forever driving people mad because I play 'tag'. Here's some information, a helpful tidbit, a thought, a challenge, a solution - and I think they're going to come and play. Mostly they respond with hostility. Der! I'll try and play with anyone who comes within five feet of me. You can see how the internet could be a wonderful playground. Wouldn't anyone be fascinated to learn all about autism and how easy it becomes to handle difficult people????? My mother's a pussycat compared to what she used to be BECAUSE I learned in an instant how to handle her. I must remember to try and take some credit for that. Oh that reminds me - the care home seemed to turn our interaction into a competition for 'who cares most and best' for and about my mother!! As if i care about that! OK I think I'm a clever poodle for having turned around a lifetime of misery into a functioning relationship but why would they deny me that! ;-) It has nothing to do with 'caring'!! I'm not interested in her 'care'!!! If they would understand her, I'd get her off my own back!!!!!
Anyway, during the 'crisis', I suddenly realised that nurses had been ignoring me! And pitying me (because they thought I was so under my mother's thumb)! One nurse couldn't look me in the face when I was talking to her. I realised she'd been ignoring me every time I visited when I thought she just didn't know who I was (I hadn't known who she was). 'Oh yes, I know who you are' she said when I introduced myself - so why had she never said hello but kept her eyes averted so as not to interact with me?! She was the deputy manager and head nurse and the person my mother interacted with most, believing she understood her. The new support worker got emboiled in the same cat and mouse game. At that point I forced the issue, forced my mother and nurses to speak to each other - the result was she got listened to, the GP was brought it, she was put on two lots of new tablets and things were dealt with. I can only assume that she's 'fine' now - as 'fine' as they repeat on and on and on. She's FINE, she's just manipulating you. (Well, she can't have been that fine if the GP put her on additional medication!!?)
And a month later while I'm still recovering from all this but staying well away from any of them - the social worker phones me to say how concerned she is about my mother, that she is deteriorating - she talks about her in the same way I had explained her to the care home when she 'removed' me - and she didn't know I wasn't going to be in touch at all...
DER!?!?!?!!
Mad, mad, MAD!
Hey, social worker - I'm not involved because my mother is supposed to be manipulating me - don't you remember she's supposed to be FINE. Everybody is FINE as long as I'm not involved. Don't change the goalposts on me AGAIN! You all wanted me to have some kind of 'convenient' relationship with her. Well, we had worked one out that worked for us after 50 odd years of pain and YOU all came along and shot it out of the water. There is no relationship any more - only one that would be completely toxic to me. GO AWAY.
I don't think I said that at the time but that's what I think and feel. I just wanted her to acknowledge the situation they'd all put me in.
These 'professionals' cause so much havoc. Do they always leave things worse than if they hadn't meddled at all??!
Anyway, I've written to the social worker and she's declined to respond. Sent me to Coventry like the care home always did. Am I some mad moron? I don't know.
Actually the social worker disappeared from the conversation. I think she was upset. I'm the one with my life falling apart as a result of her involvement and SHE is upset and gets to just walk away. I was in the middle of a sentence when somebody else took over the call. Hello, my name's A, would you like to talk to me? WOT?! You called me, I didn't ask to talk to anyone!!! I didn't say that - I found myself cutting the call.
But I'm a few steps further forward in being able to speak up for myself. I sobbed and sobbed and sobbed that day. The content of the call had burst the balloon so there was a way out of the double bind I found myself in. I expressed the double binds in my email to the social worker. I later regaled my neighbour with the story. And here I am today.
The day I can encapsulate it all into a single paragraph will be the day I've recovered!!!!!
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Reaching the end of your life with dementia or autism and a deteriorating body is upsetting.
Your mother may get upset.
She may be upset most of the time, or some of the time.
Your mother is reaching the end of her life and she is going through a passage that is upsetting to her, because her autism and N-ism whatever else have not equipped her to build a spiritual center that she can draw on for strength as she goes through this chapter we all go through.
Hence the vampirism.
And, because feeling death around the corner and seeing life slip away and being neither mentally ready nor physically well is upsetting. Some people die with a smile on their faces. Plenty of people go sour, go south, feel awful, attack those who help them, and die miserable.
Your mother is going to be upset. Some, or a lot, or now and then.
What YOUR challenge is, is to understand that is is not your destiny to soothe your mother and prevent her from experiencing upset.
(I thought that was my destiny too. Keeping my mother happy. Don't let mother feel upset. It wasn't. It was nearly my death sentence.)
Do you hear?
You are (I'm being blunt here from love, not critical): obsessed. Upset. In chaos. Upset. Angry. Upset. Hurt. Upset. Lonely. Upset. Isolated. Upset. Unhealthy. Upset.
Your destiny is to learn to soothe your OWN upset.
To take care of your OWN emotional health (hence, release her...)
To take care of your OWN physical health (hence, not be upset, since it makes you sick).
Rose-- the nursing home staff is afraid of you and you annoy them. Logic isn't the point, it's something about the obsession. They feel YOUR upset. So they are upset. And they are probably wrong -- blaming and scapegoating and evading responsibility is wrong. But most of those bureaucrats in those kinds of institutions do it. (They did at my mother's place too, to one degree or another.) I finally decided my job was to stop fearing them and thank them a lot.
And my mother's job was to make her own peace. I think she did. It wasn't a happy thing, for her to be there in diapers and in dementia ... but I could see about 2 weeks before she died, that she had let go of life. It was just gone. All the Ncharm and twinkle and that astoundingly relentless Nenergy had left her face. It took a long time and a lot of wear for her old body to release its hold.
Your mother is on her own timetable. The care home is what it is and will not change for you or her.
Back to your responsibilities...to release her. To save your own life.
To soothe your own upset.
If it takes an armada of help...that is your job now, I believe.
love,
Hops
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Thanks!
I read this and it made me smile (I could read it a lot of times and it would still make me smile) :
You are : obsessed. Upset. In chaos. Upset. Angry. Upset. Hurt. Upset. Lonely. Upset. Isolated. Upset. Unhealthy. Upset.
It makes me smile because it tells the truth. And is full of humour. It's like a poem. :-)
I could 'argue' with a lot but not that :-)
And then you told more truth
The nursing home staff is afraid of you and you annoy them.
That's the humiliating bit - I 'annoy them'. So they swatted me away - AND SUCCEEDED!
Blaming and scapegoating and evading responsibility is wrong. But most of those bureaucrats in those kinds of institutions do it.
Vindication. I could swat back!! [But how - without enabling them to do more of the 'she is annoying us so swat her away again'. Whoever I complain to will have an interest in supporting the care home because they have to work with them in the long term - I am but a blip on the near horizon. An annoying fly. And a small one at that, not even a nice big fat juicy bluebottle!! That's what makes me stuck. The best I can do is sound like a whiny child. This isn't the only part of my life where i feel this and have been treated this way.] [Don't try to answer this - I just have to express the question and the stuckness]
In so many areas of my life, I remain without...something which seems to matter except I'm not sure what it is or that I deserve it : the concept of recognition seems to be on my mind a lot this year. After so many years of put-downs and indifference and rejection. I DON'T WANT TO BE A DOORMAT ANY MORE. I don't want to hide my light under a bushel just because I'm a threat to the whole human race!!!!! I want to STOP making myself LESS!!!!! I want to be MEEEEEEE! But....
I'm shocked that the whole thing could have affected me so badly. Come out of my closet and get clobbered (again).
I hear you : 'obsession'
I was the same with my son's school. They didn't know it because I managed pretty much to keep myself under control in public. But in private, in my mind, I was completely hysterical most of the time. They weren't listening, I couldn't make them listen, I was powerless (even tho i had the support and intervention of the local authority autism specialist and an official diagnosis). They were not understanding who my son really was, they were not meeting his needs. He wanted me to keep out because I was making things worse.
You can make me feel guilty about that very easily but he was 11 for jeez sake, he didn't have the capacity to see the bigger picture. Yes, we were right to take him out of school - we discovered he was near emotional breaking point and he has always been glad that we did. He wasn't learning - he was rote learning and living in massive fear. It has taken four years to undo the harm they did and he still is phobic about anything related to 'education'. I have only just managed to get him to write his first essay : Why I hate writing essays! ;-) Mostly we do education which doesn't look like 'education'! I recognise I was just adding to his strain. But it would have been MORE wrong not to have intervened. He still doesn't really trust people, still expresses himself in very dark ways - his anger was way over the top with his peers. We have since discovered so much that we wouldn't otherwise have known as we concentrated on dealing with all his sensory and emotional difficulties. We found out he saw double. We've only just discovered he's always suffered with tinitus!! The school wouldn't have done the tests we got done - blessed that we could afford it.
I hesitate about my mother. There are the kinds of issues you refer to - her own spiritual journey and all that - but that is separate to the issues of the care home not validating her experiences. Do I care, should I care? I put her there. Therefore I do have a responsibility. 'Why did you put me here' she said when I was trying to separate myself to suit the care home. She was very upset. She never said anything like that at her previous care home where there was someone with experience of autism who had been prepared to 'hear' both her and me. I didn't bother them much at all. But I wasn't officially involved either - social services knew the relationship was a difficult one and left me out of it.
I guess the thing to do is swallow my own pain and pride and re-inform the mental health assessor of my views regarding my mother's difficulties in expressing herself and about what the care home has done (and the social worker) - really call them all on their behaviour (never mind the impact it has had on me, no emotional stuff) - and set the solicitor on them so she gets a proper assessment (not using me as a cheap consultant) - and refuse to have anything more to do with any of them.
Truth to tell (ouch, ouch, ouch), I feel ashamed that I sent an email which, in retrospect, might have been expected to produce the result it did - I must have shamed them and then they wanted revenge. But it wasn't my intention. I wasn't tactful but I was truthful. I was trying to get a new person to understand what was happening for my mother. My thoughts at the time were 'complicated' but i didn't intend harm or distress. I was too distressed myself. But they chose to interpret it in a way i didn't intend, even when i explained my intention and even tho I continued to be very open with them. They weren't going to accept that. They wanted to even things up, they wanted to reinstate their own egos by crushing the threat. It wasn't evident at first - it has taken me a long time to work this out. I don't understand why that is. Thank you for making it explicit for me!!!
Crush me - that's the thing I experience most. And I don't 'get it'. I regard myself as hardly competition in any way, shape or form. But I do want recognition. Somebody in the work place once described me (in my 20s) as an eager puppy. It was something he didn't want to have to handle. What a pity he didn't use the energy and good will an eager puppy brings! But even then I was (clearly) annoying!!!!!!! It is so HUMILIATING! :( :x :?
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Oh Rose
I hear some things that may just be my journey now but I will share them. Reject them if they are not for you.
I realized that I have Dependency Personality Disorder(self diagnosed).
I read the set of characteristics and realized that I fit them.
I knew that I had lost my trust in myself and sense of connection to my feelings at 13-14. One day, my F told me that my raging N M was fine .
At that moment, I flipped in such a way that I did not trust myself anymore. Then, I needed other people to tell me what was right. I couldn't access my "knower".I needed other people to validate my perceptions before I could trust them.
I went in to a kind of shock . I became numb.
I have been numb ever since until now when I am waking up to myself(SO slowly)
For me, it took s/one to see the me who was under all the distortions. The distortions are the lies the NM told us about ourselves such as we were worthless.
The biggest thing I hear under all your writing is your deepest self crying out to feel worth for who you are. KEEP writing, Rose.There is a lovely self under there. Love You, Ami
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((((((((((((Rose))))))))))))))))
I forgot to mention that I am part-N, extremely prone to obsession and can be verrrrrrrrrrrrrry annoying.
Keep loving yourself. Okay?
I found out that's okay.
We can be all that. We're still loveable.
love,
Hops
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Hi Rose! I've read through most of your posts - I, too, have had reams of stuff to write & get out of my system! And I relate to your struggles with autism in FOO relationships. I'll bet it feels good to let it all out, right?
Hopalong is right about your need to shift your focus toward looking after yourself, I think. There is something so subtly, yet powerfully HEALING about mothering ourselves. After all, we need it the most. It really feels wrong, in the beginning... but the benefits of trying are very healthy and that feeling goes away.
I'd add one other bit of advice, that comes from my own experience: forget about, give up, wanting vindication - just let it go. That wish (or obsession, if you like) is the flypaper that keeps you "stuck"; keeps you locked into focussing your time, attention and energy on things you can't change. It's the magic hook of vampires. They COUNT on you reacting this way... to keep the game of Uproar or "Ain't it Awful" or whatever going. In a way, mothering yourself, can be the vindication you're wanting.
"Let it Go" is very easy to say; but takes a lot of practice, mistakes, and trying again. It helps when you've got a support group backing you up and helping you try again, until you "get it" - sometimes at another level. I really needed that along the way... still do, sometimes. I know the collective wisdom, experience and caring here will help you find some solid ground soon.
I'll be back later on. There are things I'm curious about, that perhaps you can answer, about your experience with autism.
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Hello again - thank you for being so kind as to read and reply. I found myself wanting to do what I always do - respond personally, enter your experiences, hug you in as many ways possible - and then I found that I couldn't. I'm too afraid of creating upset. It's astonishing - I don't understand because that has never been 'me'. I work hard at NOT upsetting but I always find ways of looking after everyone else and making everyone feel good about themselves.
It reminds me that I don't quite understand what has happened for me in terms of my relationship with my mother. I'm angry with her - and yet it's not her fault. If I can't be angry with the persecutor, I guess I'll have to kick the cat - ??? I just don't want to know any more. I can't fight FOR her any more, that's for certain. And it's getting easier to see her as I used to see her - manipulative...(except I can't think of any other words than those given me by the care home)
I feel that I've turned into...what is it they say about kidnap victims who end up identifying with their captors???
I think I really may have lost my marbles!!
Here's my confessional!!
I used 'tough love' to force my mother to start communicating 'properly' with the care home. She was hysterical - she said later that she hadn't understand the words i was using but understood the tone of voice. She said it was like steel and she knew I was deserting her. I kept telling her that the care home kept saying that she's fine and that she's just manipulating me. I've never been so truthful, I've always protected her. Perhaps I hoped she'd simply say 'of course not' and be totally rational - as if she's ever been totally rational!!! She asked staff to tell me she wasn't fine - they knew, they'd tell me. And then the bombshell : they'd been told not to speak to me. My mother hysterical in one ear - I'm trying to phone the social worker with my other hand. Can't get though so phone the nurses station instead. Get the usual 'shrugged shoulders' response. Finally blurt out - "something's going to break and it's not going to be me and I don't see why it should be my mother." Unbelievable i should say that - that still makes me want to cry buckets. And clearly it WAS me who broke.
I wrote to the social worker later that afternoon somehow crowing that I'd managed to offload my mother onto the care home and how at various points I had avoided acting as a co-dependent (which is what I'd learnt to do in order to survive my mother at various times throughout my life). Although she may be 'N' - she has always been totally dependent on me - right back to my early childhood. I clung to her because she needed me - and I know she undermines me and thereby creates dependence in me because then she gains power and safety. I'm like a so**ing performing seal! Spent my adult years having to be so wary (fortunately I've always been too proud to be a performing seal! Pride has been my saving grace!! ;-) )
That night at bedtime I looked in the mirror and all I could see was someone vile and ugly. I was shocked at the ferocity of my feelings -total hatred towards myself. Self harm - I've known those feelings before. I decided to deal with it by looking it up on the internet : it calmed me down to see that it was a reaction to 'overwhelming distress'. That was certainly what I was feeling. Distress - that was a good word. [Get my left brain working - it somehow keeps the feelings at bay. Perhaps that's the same reason I'm up until 2am and 3am again. TV on, music on, light on, napping, waking, falling asleep from sheer exhaustion. It was like this prior to leaving my family home. Everything had been fine once I was away from the constant daily stress of my family - up until now.]
So...in offloading her, I betrayed my mother's trust.
There have been many years when she's been vile to me because she was angry because I 'left' her when I was 19 - to live my own life. I broke her trust and she made me suffer for years and years and years. And then again when my father died. Recently she actually mentioned something about 'having to trust me' - and it felt so sad. She didn't say it in a resentful way but what was sad was just the fact that she had to work at it and she was vulnerable and that trust, like a green shoot, could be crushed so easily. So what did I do....smashed it to smithereens. (Where's that hairshirt?!)
And then there was another week of shenanigens at the care home. They had their own way and I was out of the picture, but they weren't prepared to give up that easily - they had to crush me not just get rid of me. And I haven't really been right since!!!
Did they really set out to crush me? The letter was threatening and I just couldn't handle it any more. It was angry :"If we're so awful, take her away. And if she really does have autism, we're not looking after her. Let's have another meeting where we can give half truths to defend ourselves and fight you and attack you and send you spinning so you won't know which way is up. We know the social worker won't stand up for the truth and we've already had some practice at getting away with attacking you and we know nobody will stand up for you" It's really hard to stand up for myself because I always try to understand the other person and then I'm not standing in my own perspective.
I'm not really mad, I just sound it. But it's so upsetting to know all this is so close to the surface. It's always been there but my mind has always been stronger and could overcome it one way or another. Being married made a difference. Being held always made a difference. I could always let everything go in a hug. But somehow since my father died...
I have wondered how much this has to do with 'not grieving'. I wasn't 'allowed' to grieve. 'Why should you need to grieve when you never saw him?' said my mother. Truthfully, would anyone in their right mind over the age of 12 ever have to say that?????? How could she resent me taking time for myself to cope with my father's death. She certainly kept me fully occupied coping with her passive-aggressive behaviour.
Except I normally interpret all that behaviour differently these days. Someone with Aspergers or Higher Functioning Autism really doesn't 'get' these things. There's no point in feeling hurt or indignant - it just 'is'. It's a perfectly normal sincere question for someone with Aspergers to ask.
But if I do that (panic), I'll be bullied by the care home again and I'm just too fragile (hey, give me a break - cancer, marriage breakup, living alone, missing child, big leap to a new town where I know no-one, therapist disappears in a puff of smoke, bullying landlords, 'best' friend disappears in similar puff of smoke and on and on...). How lame is that. Do you think it's possible I should accept that I AM in a situation where anyone would be fragile? Everyone has their own breaking point, I guess.
I really have joined the bullies - like they say about the Nazis. 'They told me to do it' Ok - betraying my mother isn't the holocaust. It only felt like it. :evil:
But will she get off my back? NO! Today she's phoning my husband in a panic because she thinks she's been told that the care home want to get rid of her and she has to pay the bills and there isn't enough money. [See, I'm angry with her - it's not fair of me to be angry with HER). I TOLD the social worker to reassure her that I was still paying the main bills but that she should be allowed to have the independence to pay for her own newspapers. They keep asking me to write cheques for £2 and I haven't got enough! She has her own cash and cheques. And she always did deal with her own expenses before she went to THIS care home. I sent a rather sarcastic email to the social worker - not very clever but I pointed out that normally I'd deal with this matter by trying to get people to understand my mother's difficulty with communication (she and my son are like two peas in a pod!) but of course they'll tell me she's just being manipulative (and perhaps she is). Of course, the fact that I understand my mother so well that I could foresee the possibility of misinterpretation unless reassured in simple terms, is neither here nor there. They will just wilfully refuse to help ascertain her needs by observation or communication care plan etc etc etc. haha I sound like a resentful powerless three year old having a tantrum. (Do I? Oh dear)
YES I did enjoy being the one 'in control' - I'd finally 'tamed' my mother - she was no longer like a rotweiler on a leash - most of the time she was content to panic quietly under my wing. Sometimes she'd bite me when it all got too much for her but I was working on my boundaries and 'getting there'. I knew if I created space and time to talk to her, I could relax and let it all wash over me. Quite often she'd not even connect with me. It was just an outpouring. And we were fine. But the care home could not bear that. I had to give up that comfortable (and, dare I say, comforting) connection.
The downside has always been that I'm so 'in touch' with her that I'd feel her physical pain as well as her emotional pain - all those miles away. I was getting help for that with someone who works with 'energy fields'. I know it sounds crazy but that's how it is. At least I could phone up when I felt distress for no rational reason and discover it was actually coming from her. You see, there is no escape even if I DO take myself out of the loop!!!
Thanks again for the hugs and thoughts and comments. :cry:
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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
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Great idea, TT...
They're called geriatric care managers.
xo
Hops
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Well, here's the rub - I don't CARE about my mother any more. She can go..... (etc). I just don't CARE. Something I said to the social worker (I've known her for years) : "Anyone would think that I GIVE a stuff! As far as I'm concerned my mother ruined my life - why should I CARE anyway?". They seem to think I'm some kind of doting daughter being misled by misplaced loyalty or 'love' (whatever that might be). I LOATHE the woman - she's given nothing to me the whole of my adult life. My choices have always been 'stay close to your mother and get damaged by her' or 'stand up for the truth and get rejected and ostracised by the world at large'. Mostly I've chosen to keep out of her way and not HAVE to stand up for the truth. My husband was stunned by her behaviour (after years of just hearing my side of various conversations on the phone) when we visited her. He had NO idea it was so bad!!!
I watched a documentary about teenagers and eating disorders once. I saw how bad this girl's family was for her. They treated her like an irritation and a nuisance instead of with proper attention and respect. It was far from a healing environment. And yet the place where she had been treated as a resident sent her home with the message that compliance with parents meant she was getting better - I could only see a quick deterioration ahead. It was the last place where she could continue to recover. These 'nice' parents who 'only had their daughter's interests at heart'. How could the professionals be so blind? (If any has seen the Ken Loach film, Family Life, they'll get the general idea!]
ALL I've tried to do in recent times is 'the right thing' by her - she's alone, nobody else is around to look out for her and she's VULNERABLE.
But it seems that ALL I can think about now is myself. [So that's something else to stoke the flames with (guilt, inappropriateness)]. I've experienced so much anger and belittling from people because I have tried to represent my mother honestly and fairly. All I want to do is PROVE that I'm right, to right my world, to stop people humiliating me and damaging me. And I'm trying to get that under control. It's pointless, I am so unimportant in all this. I'm just a little cog and the more I fight, the more the wheels will grind against me. I had a dream about it - it likened my situation to One Flew Over the Cuckoo's Nest. Try to buck the system and the system will destroy you - however crazy and unfair and 'wrong'. People want to destroy what they don't understand.
I'll add that the meeting which started all this in January was supposed to be an 'end of life' discussion - but we didn't have that discussion - I found myself under attack - I didn't even have a context for what went on in that meeting. i gathered my mother had been labelled as 'manipulative' from day one and that was it as far as they were concerned. Oooh - as I wrote that I felt such rage, such impotent rage, such speechless, important rage. Sick bi***es.
The Mental Health Assessor - all contemptous and hissy - had asked what it was I wanted to achieve and, after some thought, I said I wanted peace of mind for her. I'd never met him before but obviously (in retrospect) the care home had set him up to disbelieve anything I said. I felt attacked - I could hardly speak my mouth was so dry! He expressed anger ('It makes my blood boil') when I said that the possibiilty of autism being the source of my mother's challenging behaviour had come from my son's paediatrician. I said 'if he knew the amount of pain there was in families, he'd know her suggestion was a gift'. I know I managed to turn him around - he was 'mellowed' by some of the things I said. I can only assume that, if the social worker completely dropped me, they will all be throwing their lot in with each other. I just don't know which way to turn - who will be our 'saviour'!! Where's the way 'in'? Who's got the key?
My conclusion is that nobody will open the door while I'm in this insane state!!!!!
Me, me, me. Pay attention to ME. I am credible - stop discrediting me. Stop pushing me out. Aaagh! (Goes tumbling down the stairs)
OK you win - I'm such a nutjob now that I'll discredit myself if I so much as open my mouth!!!!! You WIN!
But it isn't just pride - it's my 'sanity' that's at stake. If you 'prove' I'm wrong (even tho I know I'm right), then all that I've built up in recent years will have crumbled. I WILL have to end up (the destiny I have fought so hard against) in a mental hospital or dead. :cry:
Look : autism (not the really obvious 'traditional' kind) is something which is of the variety 'now you see it, now you don't'. Mothers are often accused of Munchausen's if they try to get a diagnosis for their children. When autism was first being recognised, mothers were blamed for it (it 'must be' because they are cold and unfeeling). I was ready for that in relation to my son. There are support groups for parents - and forums.
But I didn't expect to get it from a care home and from mental health professionals working with adults. I had taken 'Aspergers-in-my-life' for granted. It was part of my life. I just accepted it. I went to conferences. I'd take a certificated University course. I'm well regarded within the system - especially by people with autism because I understand things from THEIR point of view. I KNOW how hard it is for them - we make it as hard for them as they make it hard for us.
But, of course, I'm one on my own in my current circumstances. There may be a handful of us around the country - but Aspergers wasn't even know when my mother was born. Elderly people just don't 'have' autism. Mental health workers don't have the knowledge or experience to recognise it. And yet - like so many teachers - claim to be all-knowing about their area of 'expertise'.
What really stopped the mental health worker in his tracks (OK so this was cleverly manpulative of ME) : I turned to my husband and said 'do you mind if I talk about you' and then went on to describe my situation in relation to my WHOLE family. He was also 'impressed' by the fact I'd been in therapy (der?). So by the time we ended the meeting, I was so credible in his eyes that I had to produce (was the only person qualified to do so, he said) this d*** communication care plan. So the care home could act out their own (passive) aggression on me. "We're not cooperating. Just try to make us. Nyah, nyah."
It's simply childish.
And I COULDN'T COPE WITH IT.
It's all my own fault. Nobody would have expected me to break in the way I did. They tell me my mother's dying and I go to a meeting to discuss her dying wishes - nobody said 'oh we've decided she's alright now'. Nobody took care around someone who just might be feeling fragile. (Wouldn't anyone be fragile dealing with a dying parent??). I must look very very tough and strong. I was happy and attractive and slimmed down last year, my year of freedom and new starts. All I see now is someone who looks fat and ill and pale and ugly and plain and dull.
Do you mind if I have another scream....Aaaaaaaggghgghghghghhghghghghhghghghghghghghghhgh!
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Thanks for your suggestion about a geriatric care manager - I've read of someone's experiences with that on a blog. We don't have anything like that in the UK. Things work in a different way. Tried all the elderly organisations - most services are carried out by volunteers or unqualified helpers. The priority is physical care - they tick the boxes to say 'fed and clean, taking medication' and that's supposed to be it.
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Jeez - I've only just finished writing and I'm back again.
Prompted by my mother's hysterical call to my husband yesterday (I don't let her have my telephone number), I emailed the social worker and she replies by telling me that my mother is (fine, of course) and now walking a few yards down the corridor and last week actually went down to the hairdresser.
Actually thereby proving that she's a lot better off without me.
(Still doesn't take into account the fact that she's now on tablets to stop her anxiety so there's actually time for people to communicate with her before panic takes over and she loses it and refuses to engage.)
I'm sobbing away, I hate her for her betrayal if it really is all a con. I'm trying to be totally honest about my feelings in the hope I can uncover enough layers to get hold of what's happening and start acting 'normal' again. But I'm actually totally confused. I'm in some kind of 'child' state. And I just can't get my 'dignified' (adult) brain working.
She did it without me. Or is it the care home did it 'with' me. If it wasn't for me forcing my mother to communicate with the nurses and vice versa, she wouldn't be on the tablets to stop the anxiety. I sacrificed my relationship with her so they could all come together. That's good, isn't it. But i find myself sobbing 'What about me?' The care home isn't about to thank me or admit that I did anything helpful. Nor how much pain they caused me.
And if she's finally succeeding, then there's no reason to take her away as it would only be to make life easier for me (always a dangerous thing to do with elderly people anyway)
I could scream at her anyway because when I phoned for a brief couple of minutes the other day she was so obviously 'putting it on' and all i know is that it means care staff will pay even less attention to discredited me.
BUT her hysterical call was about having misheard or misunderstood the social worker. So that hasn't changed.
Oh dear - I really have lost all my marbles. I'm the one who's likely to be hysterical if one more button gets pushed.
sorry guys - I know this is getting both too much and really boring
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I sacrificed my relationship with her so they could all come together. That's good, isn't it.
Yes. And it's better for you too.
But i find myself sobbing 'What about me?' The care home isn't about to thank me or admit that I did anything helpful.
That's right. They're not.
Nor how much pain they caused me.
No, they won't admit or acknowledge that either. It's good that you know this.
They will not change for you.
The last 2 quotes above made me think, hmmmm, who's being projected onto the institution?
My D has big meltdowns and anxiety over school, professors, bosses, imperfect workplace rules, etc. It took me a long time to understand that she was projecting her unhealed FOO stuff onto the institutions (and especially the authority figures) she has to deal with in her life. It all gets played out there.
I was startled by how intensely personal your feelings about the care home are (they won't appreciate --thank-- me) and so that's what crossed my mind to say -- a care home is an institution, not a family.
You've perhaps slipped into projecting your very personal feelings about your parents onto them, so when the care home doesn't thank you, appreciate your heroic efforts, or show functional empathy for you or her ... the reason you feel so childish and out of control is you're making a care home your parent substitute? (Because if your mother is Asperger's you may have felt you missed out on a lot of affection, empathy, appreciation and acknowledgment from a parent, right? So when a school or a care home with their warm-and-caring talk is in your life, how natural that you might suddenly have a HUGELY personal fantasy about getting the responses you've craved all your life from THEM?)
I'm guessing, Rose...does it seem right to you?
Hops
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Rose - sweetie - slow down! :D
I know about needing PROOF. I BELIEVE YOU.
The reason I said I wanted to ask you more about Aspbergers' is because I do believe I've "been there", too. At least, the behaviors sound scarily similar! And as recently as a few weeks ago... and as far back as I can remember.
Deep breath now. I know the horrible feeling that if you say or do anything in a situation - you'll appear as the "crazy one". And the more panicked you are by that feeling - well, damn if you don't start to think that about yourself. YOU'RE NOT CRAZY. I BELIEVE YOU.
That self-doubt is waaaaaay familiar to me. As well as the frustration, outrage, and impotence of not being able to blame "them" for how they are without feeling you are being unfair. Well, those feelings are natural I think. I think we're allowed to feel them, even when the people aren't able to help it - when it's unintentional.
Please take a few minutes to allow yourself to experience calm and safety.
Close your eyes. Visualize a favorite, comfortable, happy place. Breathe in slowly, breathe out slowly. Look around you in this place... what do you see? hear? how does it smell? It's OK to stay here for a bit. You might feel that you've "got to get up and DO something right now" or that you've let yourself drift in this place for a very long time... but it's been only minutes. You are ALLOWED to take yourself to this place and rest. I'm asking you to PLEASE do this for yourself.
This is an exercise that my T told me to do 3 times a day, until I felt that I didn't need to anymore. Years later - I still need to do this from time to time, though it's changed and I can do this anywhere, anytime. The 3 times a day repetition though, lowered that feeling of panic in about a week; I started to sleep better, too. And don't you know? Lbrain started to function a bit better, too.
I also want you know that you're not alone in your experience with Aspberger's on this board, OK? my grandson's been diagnosed, I suspected it about his mom (my D)... and my brother surely fits the profile. My mom is still a question mark for me - and doesn't quite fit; her issues are a bit different. But I see in your descriptions - so much of what I've gone through repeatedly. And yes, in how you're feeling, too. IT WILL BE OK; EVERYTHING WILL BE ALL RIGHT.
Please, spend some time allowing yourself to rest. Think about this - not everyone will respond to you like she does; not everyone is trying control the situation and blame you or cover their ass. Believe it or not, they will eventually find out that you weren't making it all up - it does however, take time. I used to think that everyone was out to make me look mentally unstable, that everyone would react to me like my mom & brother did and I tried to overcompensate by being as unemotional and rational as I possibly could... but I was wrong. The only reason I ever had to tell someone about "what's really going on" was to reassure myself. Everyone else already SAW and KNEW.
And while I was so busy overcompensating - I wasn't taking care of my own physical, emotional, intellectual needs. In fact, I'd gotten to the point, I didn't really know what those needs WERE. I'd hate to see you get that bad off, Rose. It won't hurt for you to "take a day off" (maybe two days) from even thinking about all this - it'll still be there when you're more rested, a bit refreshed and maybe have had a chance to see things from a different perspective.
Please?
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Please ignore the hysterical panic if you can. Can't go yet! ;-) I've just come back from a reflexology session - she's exceptional and I'm lucky to have found her. She thinks I ought to let 'them' know just how badly I've been affected. I recognise that I'm in quite a bad place. It became obvious during the session - I have to wonder, often do, if I'm not on the 'Spectrum' myself. Sometimes I wish I were - it would explain why the world reacts so badly to me and why I seem to be so naive in my dealings with people. But I suspect overall...not.
BTW AS runs in the male gene although, in principle, it may miss a generation. But I'm betting if a child has been diagnosed then the father and grandfather will have the same thing to some degree or other. LOL Joke coming up : if the wife is a basket case then the husband probably has AS. ;-) That's my 'finger in the wind' test. Actually, seriously, it makes you ill. If a wife has been married for more than a decade and has some kind of immune system disorder or debilitating illness...
I'm up for answering questions, sharing information.
Is the care home my 'mother'? Well, I do 'hear' myself when I refer to the care home and I know exactly what you mean. And I couldn't say that there isn't truth in that. I recognise my childhood coming up and smacking me in the face and I can't find a way out. I refuse to humiliate myself by 'acting it out' which is why I'm here being hysterical instead of rampaging round the care home. ;-) (Oh and you described it all so beautifully! Hit the nail on the head perfectly. I'll come back later and read that again just to remind myself.) The thing is it's mixed up with current reality, too. But I've 'lost it'. It's like the past is a magnet and it's sucked me in because I finally wasn't strong enough to resist its power.
I continue to refer to the 'care home' because it's less challenging than making it personal and referring to the care home manager. Some of the nurses have not behaved well but it's the care home manager who is 'out to destroy' the threat ie me. I suppose even saying 'out to destroy' is madness. She was angry but also two-faced and a liar. That's what I couldn't cope with.
I find it SO difficult to define this stuff. I 'experience' it. (That's where my husband was such a treasure - he and my son can always put words to what's going on - I struggle around it with my feelings and experience and they supply the words and that settles me and satisfies me and makes me feel safe. And that's just what I don't have any more.) The care home manager wanted to block me and stop me (just like the special needs coordinator at my son's school). She thought that right was on her side. I'm sure they all think that right is on their side.
She had felt attacked by me. What I'd written was misinterpreted but also I have no doubt that it had offended her (nearly wrote 'their' again!) professional pride because some outsider (me) had been invited to write up this care plan - a relative no less and someone she already held in contempt - not that I had known that at the time. Because they kept choosing not to communicate with me or answer my questions (oh yes - I've been well used by the social worker to 'make things happen' while she stayed with her own butter not melting!) there was a lot going on that I didn't know about.
I was SO ashamed when I realised I'd done something so bad. I'd written something that was so 'wrong'. I keep saying it was misinterpreted and it was. But that does't stop me being 'shriven' to my core. It's a long time since I've had that kind of feeling. I'd set a match to a bomb and it went off!!! And I have turned into a wailing, whinging child. Wasn't my fault. Can't be my fault. eek eek eek. Terror...terrorised...
But what that brings up for me...is my mother's meltdowns. People with Aspergers have meltdowns. I must have set them off in her when I was a child. I've seen more recently what happens to her. Mostly I've just experienced it over the phone. I actually can't take this any further right now. Am exhausted. I apologise for bringing so much distress onto the forum, I really do - but just grateful for being here and for people being willing to respond. Very, very grateful.
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Dear Rose,
Don't apologize for hurting. You were not able to develop a sense of identity b/c you had to take care of a mentally ill M.
I am talking to myself ,too, Rose.
You did not have the chance to develop the adult self that a person with a good M did.
You are reacting from your poor scared child.
Keep writing. I want to hear it all. Love Ami
PS I got a DVD on Kundalini Yoga from Amazon----Yoga House Calls. It has a meditation that says it can heal core emotional pain . I have been doing it and feel much better. I can't explain it but wanted to present it to you for your consideration since you seem to embrace natural modalities.
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Heavens, no apologies for "bringing distress onto the forum"!!!
Lawsy, girl, what you think we're here for?
love,
Hops
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We're all glad the board's still here,(( Rose.))
Keep posting..... you're making a lot of sense.
Mo2
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My poor reflexologist has to put up with me rabbiting on - I lie on her couch and 'freefall'. I told her about how I was back here on the forum - hoping for that moment of insight by digging deep, exposing my soul, confessing the smallest emotional misdemeanour, shining a light into the furthest recesses - and I came to a sudden full stop in mid-flow with the conclusion that...actually...this wasn't about 'me' but about 'them'.
My great distress is the result of other people behaving badly. Even the strongest person will break. My husband wouldn't break but he'd just not let them reach him in the first place - somehow he wouldn't get caught up in the 'game'. He'd 'play' the game, and just do what they'd want of him but wouldn't go beyond that. He wouldn't be attempting to help my mother in the way I have, so simply wouldn't be vulnerable to getting emotionally 'beaten up'. He wouldn't throw his heart and soul into anything. He'd use his intellectual capacity and that would be it. No heart and soul to get mangled. I regard it as his gift - even tho it has caused me pain as his wife (who expected so much more to evolve from the relationship!!)
But then I did find some more insight here - coming up to a complete full stop with the memory of my mother's meltdowns. And connecting (intellectually at least) to the full horror of my 'moments of truth'. That moment of horror in respect of the care home - the other being when my husband revealed himself to me, letting me know that he'd been 'hiding' so much from me throughout our 18+ years of marriage. He's often said since then that he felt his revelation had been blown up out of all proportion. But it 'blew up' my brain, my heart, my soul and drove me into a place of sheer horror and terror which can only have previously been experienced in early childhood. I recognise these as feelings which have crept up on me in times of quiet. I have tried to get hold of them, tried to run from them - whatever they were...It was about the full horror of knowing...what? the full extent of my mother's narcissism?? That I didn't exist for her, that I was invisible, that I didn't matter, that I was both victim and persecutor. Annihilated myself, after having lit the touch paper to annihilate someone else. ????
I have no idea what I am talking about but it seems to have some meaning. It feels as tho a bomb went off in my brain, a fuse blew all the connections. There is no-one to blame except my inability to process the full horror.
Reflexologist tells me that she senses some emotion keep trying to find its way out, that I shut it down before I'm even conscious of it. And I wonder again if it relates to my father's death and not having properly grieved - but then...not properly grieved for all the burnt-out relationships. The irony is that I forced myself to stick out my relationship with my husband when actually he was trying to get rid of me. I just didn't recognise that feeling I wanted to escape was a result of how he was choosing to treat me! I assumed it was my fear of creating a deeper relationship, my inability to stick something out. Jeez! I've been 'on the move' so often in my life - and that was OK when I was younger but I wanted to encourage myself to settle more and not be such a butterfly, albeit a serious and studious one!! And it turned out to be such a mistake - my health has suffered so much.
I feel like someone who has been bashed and battered and left to die on the pavement, no strength left even to drag myself to any kind of shelter, open for passing folk to give me another kick or beating as they choose because it's so evident that I've no fight left in me.
I'm disinclined to feel sorry for myself but I could do with being given recognition for who I am, my gifts, my abilities - or at least stop having my failures held up to me every day. But I find that I'm locked in to (business) relationships which treat me just as badly. I left my husband, but I don't see any way out of these business relationships - I'm stuck with them because I don't have the strength to start all over again. I don't have to start (marital) relationships all over again - but paying the bills begin to be a problem because I've been smacked down for so long. I ask people to have more consideration and they just can't help the 'same old' behaviour - ignoring me, reneging on promises - passive-aggressive behaviour. And perhaps I have some investment in them continuing to do so. Or rather - I don't have the strength to put in place any changes which would prevent them doing so eg phoning, setting deadlines, phoning again. And again, and again.
I am aware that my 'best friend' deserted me at EXACTLY the same time as the 'crash' with the care home. I think that possibly affected me more than I realised. The one person who had come up to the plate when my cancer was diagnosed, the one person who actually seemed affected by the thought that I might die, the one person who made me feel 'normal' - I saw how she 'cared', how she did so many small things, how she just 'understood' - and I realised that was how I 'cared' for my family. They just didn't recognise it as such. I have no idea what they really wanted - their autistic world is so different to miine. She helped me 'escape' the nightmare. But then began an undermining I hadn't noticed before - and then that grew to spectacular proportions - and all the time I'm being understanding and patient. How destructive does one person have to be before I get the message??!
Jeez - I must be so exasperating to these passive aggressive people in my life - I must seem completely impervious to the messages they are trying to give me through their behaviour because I'm being narcissistic (in a generous way!) and thinking it must be 'all about me' instead of recognising it's 'all about them'!!!!!! Triple 'der'!!!
But I have started to relax a little - I cancelled an appointment yesterday, following my intuition about what would be best for me, and relaxed into my exhaustion rather than instantly falling asleep as a result of exhaustion every time I sit down. My mind is racing less. My Reiki lady reminds me to think of my autistic son as happy, fulfilled and content, with a career niche and a lovely girl who will appreciate all he has to offer, as this will help fill me with loving feelings rather than fear and unwellness. And it does.
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Dear Rose,
What happened with your best friend deserting you? Ami
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She had money problems. For years I tried to put business her way - she had skills I needed; I had money (my business/financial success was in part because she had given me the opportunity to help her with her own business venture. Through 'helping' her, I had gained skills and confidence and a unique way of developing a different business venture when the opportunity came along. I don't forget my 'roots'!) But she chose to undermine my business by 'not doing' the jobs I put her way which were small but fundamental to my ability to make moneyl. For two seasons somebody else's needs or interests were constantly more important. I made no sales at all during those two seasons. I allowed it to happen. I didn't think I needed to set dates for work to be completed by as she knew inside out how my business works. She finally said that although it must have been obvious, it hadn't occurred to her. I believe her. But it seems to me that it was dishonest - passive-aggressive behaviour that she wasn't aware of.
There's some other stuff too complicated to explain - we'd known each other for over 20 years and we had marvelled at how our friendship had developed into something unbelievably strong and rich over that time and suddenly I was relegated into being associated entirely with something she was uncomfortable with and had chosen to become involved in. She wasn't reading MY emails because I was associated with this other project - something I had not asked her to get involved with. It was that 'horror/terror' all over again. It was a terrible shock to realise she had done this - that our friendship was actually *that* unimportant. I was devastated and she couldn't have given a toss. I wrote simply that her actions had not been well received.
And then...she disappeared. And it's odd because it's as tho she really did disappear. I had the impression of 'not existing'....and yet it was as tho *she* no longer existed within my energy field. She's often told me that she can do that - just completely drop a relationship when it's convenient. She wrote briefly to tell me how she had been meeting up with various friends (?! - what makes me suddenly not counted or noticed as one of those friends being missed out, I wonder) and the other day, after a two month silence, a very long email about everything she's been doing in between time. Clearly she's been busy.
I'm so sorry (sarcasm) I was such a drain that she needed to do all that without 'talking' to me.
As if I care.
We used to email each other every day - twice a day or more!! I never bothered about when or if I'd get a reply. We just communicated as and when but it was often. We communicated at the deepest level, about our emotions and relationships.
She avoided any mention of the rift between us. It would have been better to say 'sorry I just dropped you but I needed to...' rather than regale me with her busy, busy life - She had recently moved to the area I moved to and had a social network already in place through family and friends. She begged me to move here so we could have such fun going out together - girly friends. I said it wasn't possible (didn't want to be dependent on her and still don't want to be) but a whole load of strange coincidences pointed me here before I knew this was the place she intended moving to. She was upset because it took her a year longer to move here than she wanted to. And once I moved she started putting me down - everything which gave me joy was something she wanted to disparage. Disparage and sabotage.
It was getting harder and harder to value her and her friendship.
Perhaps she was doing exactly what my husband did. I'm here with loyalty and they all just want to get rid of me and I just don't take the hint!!! How humiliating. So their behaviour gets worse and worse. And I'm struggling to be good and take it on the chin!!!!!
On the other hand, my husband gets upset for me when I 'fall out' with people ie stand up for myself, because he says he's afraid there'll be noone left (ie if I stand up for myself, people will fall out with *me*). It did occur to me that there's a huge world FULL of people out there. And some of them must be decent human beings who are able to be honest.
The people in my life just want me to be honest so I can be blamed for the rift that THEY want. Huh!
I guess that's the story in a nutshell. I just have no desire to start communicating again. (And that's totally unusual for me as I do just keep plugging away and forgiving and seeking understanding and preserving what we had.)
And somehow, that all got intertwined with what was happening with my mother. It's not her fault but I'm angry with her and don't want to talk to her - but also feel sick to my boots at even thinking about the care home. Perhaps I'm thinking (unreasonably) : 'why didn't she protect me from them'. If she didn't behave so badly and unpredictably, then it wouldn't be so difficult for me to represent her interests. She's not exactly a cuddly bunny, more of a spiny porcupine. But I'm the one supposed to be protecting her interests as she is now elderly and vulnerable, incapacitated and afraid. (Well, I'm afraid, too, momma! Not that that's ever been allowed for some reason.)
Anyway, back to my friend. She no longer has money problems - it's been solved by an inheritance - it's come a little earlier than expected. So, strangely, there are parallels with my mother's care home again. I am unwanted, not needed, left hung in the air somehow. I could heap more coals upon myself right now but...I'm not going to. This was about how my gifts were received and trashed, not about some nasty ulterior intention of my own. I gave gifts - not self-sacrificing ones but gifts which felt like they had positive, normal and adult transactions behind them.
And they landed in dry earth, not fertile, receptive ground.
That's all, really. Just dry earth. I experienced it as something much bigger, more massively painful, annihilating.
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Wow Rose
I think of my own life and how FOO patterns repeat in an almost effortless manner. I am in a new relationship and I hope the old demons do not come up to bite me in the" you know what "again.
I am almost lifeless at the feet of FOO patterns b/c they are so powerful,insidious and subtle. They are hidden like energy waves until they come up and bite you and THEN they are huge.
When they bite you, part of you knew ,all the way along, that they were there. Ami
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I think something else i'm finding difficult is that the set of people I work with no longer seem to need me or aren't interested in my input any more
But this evening I'm beginning to feel quite cheerful! I've been answering some other posts and I've finally entered the land of Twitter and Audio Boo - found interesting people and new ideas. I see how they work now. I have spent hours on there. Not very productive but in my head I'm interacting with people without being challenged or elbowed aside or dumped or dumped *on* (UK English-speak) or generally messed with or humiliated or any of those duff things that 'real' people make me feel.
You just never know when 'real' people are going to collapse under the strain of your interaction. So make sure you have plenty of people in your life, spread yourself far and wide and be strong, don't ever need anyone.
I don't know if that is the way to live in the world or not - but it's what I decided when I was younger.
Therapists and such have different ideas (and so did I at one stage) - but they live in an ideal(ised) world.
I'm discovering that my earlier decisions were probably the right ones and probably right again in my current circumstances.
Sigh! I just feel too tired (and old) to make the effort!!
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Dear Rose
I know what you are saying about earlier postures toward life. I am re-discovering them,now.
It sounds like that happened to you, too. Ami
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Hey Rose - no apology needed - you aren't causing me or the board "distress". I know the need to completely empty yourself of words... especially when you've been triggered into feeling old "stuff" again. I've done more than my share of "hysterical babbling" (my definition of what I do) just to take the internal pressure I felt, down a notch or two...I was just concerned that in the process, you're not able to find moments of calm and relaxation. You need that, too.
I wonder, about what you said... about a feeling coming up that you hadn't fully dealt with - at today's level. I wonder, if perhaps you are being reminded of the loss that occurs - loss of and grief for, a primal relationship and aspects of our self - when we have a mother who can't - for whatever reason - perform the essential functions of mothering, except dysfunctionally. For myself, I've found that I do repeat the process of dealing with that level of core, primary loss, over and over... because I haven't yet completed the necessary relationship between my "self" and myself to replace that loss. It's still a work in progress.
It might not hold true for you... but I thought I'd make the suggestion of the idea, since you seem to also be searching for "clues" along with needing to just "get it all out".
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I have relaxed into my exhaustion - so I'm not rushing around like a headless chicken any more. But here lies misery and...anxiety. I feel as tho I'll jump out of my skin at the least 'disturbance' to my equilibrium ie way out of what's reasonable. It reminds me of being like a baby - the 'startle' reflex.
Ooh - how interesting : I just looked that up on Wiki - An exaggerated startle response is often seen in patients with Posttraumatic stress disorder (PTSD).
Just goes to show that too much stress over too long a period causes real significant physiological problems : http://www.ncptsd.va.gov/ncmain/ncdocs/fact_shts/morgan.html?opm=1&rr=rr107&srt=d&echorr=true.
I thought I was so much better but clearly I needed to be a whole lot stronger before getting clobbered again. So perhaps there is a tiny bit of hope that i could have a normal life again one day. Am just completely burnt out - AGAIN! Grrrr!
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Dear Rose
I know what you mean about EXTREME irritability. After Scott died, I had his loss plus a whole life time of other losses.
For me, Kundalini Yoga is restoring me body and mind.
I used to have dark circles under my eyes(adrenal tiredness). Lately, they are gone.
Keep sharing, Rose.
Having our M's is a lifetime of sorry, grief, stress and remorse. You are among friends! Love Ami
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Adrenal tiredness - dark circles : interesting! I did a test some time ago and discovered my adrenals were completely burnt out (which validated my thoughts that an operation to cure the cancer would actually have killed me! I'm glad I believed my intuition at the time - even tho I had to 'run away' in order to stand my ground!!) (Now there's the story of my life!!) Impossible to be different to how we are. People think I'm strong. I'm not weak but...
I did pay attention to your suggestion about Kundilini Yoga (tho I'm not a great one for Yoga) The DVD you suggested isn't (yet?) available in this country but I've got a similar one on its way!!
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Kundalini Yoga has simple postures and focuses on breathing . I got Yoga for Dummies---Beginner and Intermediate. I learned simple postures enough to do most things.
Even without the Yoga for Dummies,if you can breathe and do simple movements ,such as raising your hands above your head,you will thrive.
I hope I have not been too pushy about it. I am so excited to finally heal.
It is a beauty and anti-aging treatment, too.
You get so much oxygen that your skin glows.
Let me know if you go forward with it.
Love Ami
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Well, Rose if you could bring yourself to try my suggestion for a very short time - a few minutes total, 3 times a day - you might be able to lower that anxiety level. Doesn't hurt to try, does it? And it's better than a pill that has worse side-effects than the benefit you're trying to achieve! My feelings won't be hurt, if it doesn't at least "take the edge off" for you.
Any mind-body activity will probably have very positive effects for you. It did for me - I went with tai chi, instead of yoga. Partly, because classes/class times offer me a structure and social interaction.
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Dear ((Rose))
Part of having a voice(our goal ) is to chose and/or reject what does not fit.
I feel pushy with my suggestions but it is from a place of love. If they do not seem applicable to you, reject them..
Love Ami
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Hi PhoenixRising - Oh I do so hate to stop and smell the roses ;-) I was taught how to meditate as part of my recovery from cancer and I was doing not too badly - but these 'threats from the outside world' have put me in a place where I don't feel safe enough to stop and feel/think/sense. However, I have started to put on some of my tapes - can't say I'm 'listening' but I believe in the power of the subconscious to hear what we think we haven't heard!
I was re-reading your post - I hadn't fully taken all of it in before so I must have calmed down significantly to be able to 'hear' you today!!
I used to think that everyone was out to make me look mentally unstable, that everyone would react to me like my mom & brother did and I tried to overcompensate by being as unemotional and rational as I possibly could... but I was wrong. The only reason I ever had to tell someone about "what's really going on" was to reassure myself.
I feel embarrassed but 'recognised'. Mortified but 'saved'. Thing is: I'm driving myself over the cliff into mental instability, struggling and fighting with this demon!!!
Everyone else already SAW and KNEW. Kinda mortifying isn't it!!
And while I was so busy overcompensating - I wasn't taking care of my own physical, emotional, intellectual needs. In fact, I'd gotten to the point, I didn't really know what those needs WERE.
Oh yes - totally.
You got me! It's rather like being pinned down (not in a bad way) so I can't move, can't keep struggling and running around like a headless chicken. I'm saved from making an even greater idiot of myself because 'there's the truth' but alert, alert, ready for the next threat in case it comes. LOL Not relaxed exactly but listening. ;-)
Thank you.
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Hi Ami - That's one of our 'things', too, I think. Feeling pushy for having made a perfectly reasonable suggestion which had no strings attached. I didn't feel imposed on by your suggestion or the fact that you offered me something from your own experience. That strikes me as 'normal'. It's the people who defensively can't accept something entirely appropriate who have the problem. (And maybe that's also sometimes us!! ;-) But not on this occasion. ;-))
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A big step forward today.
I went to a business meeting. This is another area of my life where I am 'unheard'. I have been taking slow painful steps to make a difference, to work on the people concerned, to make myself known for who I really am (not colluding with negative impressions and assumptions) - but nothing seems to change. People don't change, however willing. I've been through 'explanation'. 'confrontation', sharing, suggesting, patience, opting out and then self-defeating anger. This has been going on for years. I get knocked back, knocked down, ignored. My misery and depression had reached the lowest point and I intended to leave it all behind because I just couldn't take any more pain. (It's more complicated than just a 'job' but I'll protect my privacy if you don't mind by not going into detail)
However, I discovered that two people feel the same way I do. One also had expressed a desire to walk away. The other was shaking with passionate rage, frustration, anger...disappointment - and enumerating the many things that *I* have felt. Wow! It's not just about me and my inadequacy and neediness and expectations which are too high or inappropriate!!!
There aren't any 'N's here - or at least I don't think so. It's not about internal politics. There are good hearts, good intentions - fear, sensitivities, investments at stake - maybe even gender makes the difference. People work hard - but perhaps at the wrong things. And also give the impression that the best people aren't listened to and are undermined in all sorts of subtle ways. (No, there *really* isn't 'N'-ism at work even tho it may sound like it.)
Anyway...I made really good intelligent contributions to the meeting - I'm well capable of doing so but I'm amazed that I did. I didn't 'sweat' or have 'buzzy hearing' before speaking and it was only quite late in the day (and I'd had to wait for a while before I could share my thoughts on this occasion) that I started to shake before I spoke. I have a brain so it's natural that I should have opinion but I was contributing, making a difference. I even managed to remember what I intended to say - I managed to keep my thoughts in my brain long enough to finish multiple sentences!!!
I'm not sure I remember a time when i could do that in a group - a roomful of people - if I wasn't actually chairing the meeting!!!! And, between stress, menopause and medication, I didn't think I had (would ever have) a functioning brain any more.
What made the difference? Working hard at making one person understand me perhaps made a space in which I was allowed to speak without getting blown back (too often anyway!). And for once I only had to drive fairly locally so I didn't arrive totally stressed out.
But...d'you know what...when I told my ('estranged') husband two days ago that I wanted out (I wasn't seeking permission, it was a statement of fact and nothing to do with him or his life) he said 'don't worry, I'm sure we can all live on my pension'. That is probably the kindest, kindest thing anybody has ever said to me. With all the difficulties we have faced, in our opposite corners, with fear and misery and misunderstandings and all the rest - and knowing his 'issues' about money and debt...it was the very last thing I would have ever expected. 'His' money never even crossed my mind!!!!!
i do realise, realistically, that it probably meant a kind of status quo for him that wouldn't actually be very healthy for me - but that's the nature of AS and not evil intention.
But what matters is how it impacted on me : what a kind, kind, kind, kind thing to say, to offer.
It reminds me of a time when a therapist said 'I wouldn't do that because I know it would send you into a spin'.
[Well, I think she would and she did say something in particular - can't remember what it was all about now! - but what matters is that she was able to have the WISH not to. And I didn't realise until this moment that it means I am sent into a spin by things because I know someone wishes to create the 'spin'. It relates to my mother's manipulative behaviour towards me. I am stunned and slightly confused - will have to think some more about that!!]
Anyway - that was probably all very boring and irrelevant, but...I just wanted to share that something very positive happened today. I functioned!!!!! And seeds have been sown that will really will make a difference.
Unbelievable. (Oh, and I also practiced having 'happy' thoughts all the way to the meeting - can't say I really succeeded but I did keep stopping myself from catastrophizing and being too miserable and depressed - just maybe it made a difference!?!)
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Dear Rose,
You are celebrating things such as being able to think in the meeting.I celebrate with you (( Rose)). I know what you mean about s/one saying s/thing very loving and it is so overwhelming . It is a big Wow b/c we have been so rejected.
I have had moments like that where my heart actually swells b/c s/one loves me .
Ami
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eh.... Rose... really, nothing to be mortified about! We really can't "do" anything about "them" - nor should we (for the sake of our own sanity, I believe). Once in a while, it becomes necessary to try to explain... and sure thing, all those other feelings come up right along with it. Don't you just hate reflexive programming in our brains??!
I didn't mean to pin you down - only to get you take a good long, refreshing deep breath! I certainly recognized EXACTLY the space you were in... having spent most of my life there. This too, shall pass.
Glad you had a success! The hardest thing for me to learn, was that other people wouldn't react to me the way my mother/brother do. That's coz I just assumed - and you know what they say about assuming - that I was the one with the "problem". At least, according to "them", I was! Those kinds of successes are pretty important and they deserve - as do you - your moment of glory.
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It's OK - I am happy to take responsibility for my own feelings - no blame or responsibility allocated elsewhere.
I wish I could remember that when other people dump on me because it's MY fault that they feel whatever they feel!! Bleah!
And I've just realised : I'm not voiceless any more!!!!
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And I've just realised : I'm not voiceless any more!!!!
... and it's all good.
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How are you doing, Rose? Thinking of you. Ami
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Hi Ami - I'm realising that I'm not in a good place - small challenges and unkindnesses set off tears. I've no intention of popping pills but reading 'self help' stuff leaves me wondering whether it's possible to move on at the moment.
Limiting beliefs, thinking positive thoughts, affirmations...
I thought the following was useful but...
http://www.craigharper.com.au/2009/05/taking-back-your-personal-power-part-1/
I know the principles - I think it doesn't work if you've reached a point of not being well.
I don't know - as I think it through I just end up feeling confused.
I'm going to acknowledge I've been let down and rejected and ignored and crushed by too many people in too many different parts of my life all at the same time.
I had the courage to go on retreats - and, where possible, not to put myself in the presence of people who hurt me. I allowed myself to be a little bit dependent without fearing I was taking advantage or would be harmful - I avoided thinking that it was my role to be the strong one, not allowed to ask for or receive help.
That's about as far as I've got!!
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Dear Rose
For me, self help groups and people's trite sayings about "Get over it" left me with guilt not help.Rose, our pain is deep. It is real. It is not being a baby or a victim.
It is a deep posture toward life that we HAD to adopt in our crazy families in order to survive. It was survival, Rose.
For me, being understood allowed me to begin to heal.
My M made me feel like *I* was the crazy, incompetent one. It sounds like yours did the same.
I have to heal every small layer by layer with people who say,"I understand" and can see the real me behind all the mess.If a book or person wants to give me trite advice, I reject it and find someone who has the wisdom to see beyond the superficial to the real.
There is an intelligent,insightful, funny and real you under all the lies your M told you.
Love , Ami
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But then...if everything I feel is a result of what i think - and I have control over what I think...
Except i don't feel I do have control over what I think. What I think comes unbidden. I can choose to 'change my mind' and refuse to listen to the little demons chattering away.
But quite often I don't know what to replace those 'demons' WITH!!
If it's about self-esteem, that's easy. If it's about putting myself down, then that's easy too. I've done those things. If it's about not allowing my mind to chatter on about some interaction, then (if I catch myself) I can choose to bundle it up and put it out of my mind, over there, out of sight. I can roll it into a ball and throw it (metaphorically) at the person concerned. Let THEM keep the trouble they've caused.
And then I feel such an idiot for having let someone trouble my mind so much. I ended up flailing around, helpless - made helpless by their lies and anger. Allowed myself to be made helpless. So now I feel too humiliated and ashamed to enter back into the fray - when actually THEY should be ashamed of THEIR lies and anger.
But I feel too (mentally, emotionally) fragile to hold up against more of the same.
I watched Slumdog Millionaire today. I don't know what it was that got to me but I found myself sobbing way out of control. My theme appeared to be 'let me live'. After the cancer 'scare', I don't trust myself to keep myself healthy when difficult situations come along. I know that my primary feeling when the diagnosis came along was that I wanted to let it 'just take me away'. Isn't that just sodding awful. I was living in stressful misery. And after working really hard, taking risks, doing the unthinkable, even having to give up my son, I had hope, less constant stress, and freshness and health. I have been very strong in 'giving up' what's not good for me. But then, I've done that all my life.
But now I'm back where I started (or worse). And all because of 'other people'. My inability to cope with difficult people. My 'ability' to stir up other people. My feelings of frustration and hopelessness from not being heard - and the horror of the impact I seem to have when I am finally 'heard'. Why am I so impotent and yet so challenging?
I can see that I'm constantly coming up against other people. Why do I have to do that? Is there any way I can do without them, without the need for recognition and a few positive strokes? My mind is constantly going over how I am ignored, not valued, put down behind my back - and become an irritant or threat when I try to be noticed.
I've often thought that if I treated other people the way i am treated, I wouldn't HAVE a business. And I need to interact with all these people...
Or do I?
They constantly enter my mind because they are associated with either a) my business b) my mother c) where I live.
Do they really matter? Do I REALLY need them? I have chosen to need them, to require their permission or approval or acceptance in some way.
I have indeed given my power away.
But I feel too tired, fragile, wobbly to take it back.
So I remain somehow their victim.
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Oh (((Rose)))
I hear you not trusting yourself but needing the outside to validate your being. That is why it is so stressful to deal with people.
The solid 'Rose"is not there. She is absorbing people's definitions of her.
Our present situation comes from not being entitled to have an identity, a personhood.
My M never wanted me to have the power of my own independence. Then, she would mock me b/c I was too dependent. How ,in God's name, was I supposed to develop a self?
It seems like you came from a place like this.
The answers--- that is the hard thing. I think being understood is a first step.
Having at least one person who understands can make the difference between life and death. Love to you Ami
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Thanks Ami. I thought I was stronger than this. I thought I had learned all sorts of things but I seem never to have moved on at all.
How did I manage to become a warm, wise, confident, strong woman - someone who people thought was BORN with a silver spoon in her mouth - when I had a mother who took every chance she could to put me down and yes do the kind of things you mention, Ami. I came across an old photo of me I had never seen before and I can see why people would think I was kind and strong. (Interesting that my mother kept that photo hidden away - I found it in a box when clearing out the house - she kept out on display a really horrible one. Sadly typical! Although saying that is making assumptions about her motivations...)
Anyway, I don't feel I can be that strong and caring person any more. I'm beaten to a pulp. I will not accept this is my ageing 'lot'. I will not live the next 20, 30 years incapacitated. But I am exhausted, worn down.
But forget that. It's a fact. I AM exhausted and I can't get away from that fact. But let's forget it.
You're right. I am indeed allowing other people to define me. I'm saying 'but I didn't mean it to be taken that way' instead of saying 'this is who I am - if you think I'm something different then that's unfortunate but get over it' !! 'I am still 'me', no matter what you think or how you choose to define me' 'You define me according to your own filters - why don't YOU be embarrassed for a change'. Never, never, never give away your power for an instant.
Actually, it's the 'who defines reality' thing. When and why did I give that up?
When I was a child, I retained my right to my own reality - and it was strong but only if kept hidden away, well out of reach. Externally, I think I was numb/dumb. I hid everything so it couldn't be 'got at' and damaged. As an adult, as I grew up, I wanted to come out of my hiding place. I had experiences which told me it would be OK - and so I went into therapy with the WORST possible therapist! And it's been touch and go every since. Discovering Aspergers gave me my right to my own reality : they can't help having a slightly 'skewed' sense of reality. Actually, I discovered it here before I discovered Aspergers - some people actually NEED their purple clouds with yellow spots!! Anyway, I'm thinking that the whole confluence of things coming together would have knocked the strongest person off their perch. Mental Health Assessors who fight you and crush you and express anger at you for daring to express your thoughts and those of other professionals (however right you are) is a pretty powerful nemesis. They are the ones who hold the power over the definition of mental (in)sanity after all!!!!! But the man was just plain ignorant.
Anway...
It's funny how things come along in threes! It's funny how things change when you change - or perhaps we feel the energy changing 'in the air' and so it enables us to change :
I spent most of yesterday trying to work on my thoughts - changing them, finding a better way of defining my situation. And then, in the evening, I found letters on the mat from both the social worker and care home. And today an email from the business side of things.
Social services have rewritten the notes of the meeting (although I don't have the courage to read it! I just can't bear the emotion if it hasn't fully responded to my complaint!! But it has taken weeks for them to respond so they must have put *some* thought into it) And the care home has finally sorted out the continued demands for overpayment (it's only taken a year!) : I can't say the letter was helpful - it contained the usual 'wasn't us guv' kind of defensive half truths. But the feeling I have is more akin to contempt than any kind of fear. And the email from the business-side singled me out for thanks and...der?????? was that actually whole-hearted, no holds barred...PRAISE?! Recognition that the kind of intelligent, well-thought-out and detailed feedback I give is actually USEFUL instead of a pain-in-the-bum malevolent attempt to catch them all out??! For the first time EVER!!!
How did that come about?
I did two things
i) I didn't rush in to rescue everyone. I didn't take pity on the social worker. I suppose I made her do her effing job. I left everyone to stew in their own juices. Much as I was advised by just about everyone I spoke to. Much as it hurt and humiliated me to relinquish 'control'.
ii) I asked to be recognised as a thoughtful contributor - and then, when that wasn't forthcoming, I said (and meant it) that I was leaving. (I suppose - actually i pretty much did that in both situations except in the one I 'left' by getting too 'ill' to do anything else.)
Was it all just a 'cunning plan' by a wiser side of me?!!!
Not quite that simple. Although THEY have 'shifted' - for which relief much thanks (because it means other things will shift) - I don't actually feel any different. I still feel I'd throw up before I could get anywhere near the care home for a meeting or a visit or whatever...And i feel 'too little, too late' about the business side of things.
Worn out by writing this - and I've not even written about anything particularly emotional....(Sigh!)
Bye for now!!
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I came across this today :
Dealing with negative thoughts is a life-long process for most of us – and definitely becomes easier over time when we work at it. Negative thoughts (that is the initial thought) “arrive” in our head regularly. Think of them as cars pulling into a petrol (gas) station. They can pull in, stop for a second and move on (good option) – or – they can pull in, you can jump in the front seat and start “driving” them (not-so-good).
Thoughts only become powerful when you attach emotion to them. They are meaningless until you give them meaning.
And it's us that gives them meaning.
It encapsulates what I've been struggling with but I'm still at a loss when I try to find my own words.
I allowed other people to decide my reality for me. I capsized under the strain. "OK, I give in - every time I try to get you, the care home, to understand what's going on for my mother, you respond by telling me 'she's fine, she is just manipulating you'." : The answer doesn't connect with the question. I can't make sense of it. The two are diametrically opposed. If I enter the care home's experience to empathise with their point of view, I can't deny what they say and that's where I got lost.
But the fact is their response is just totally irrelevant. She's manipulating because it's the only way she can get across her meaning. And just 'saying' she's manipulating doesn't mean that they have understood her meaning. I am prepared to listen beyond and behind the manipulation but it's tough going. I work beyond and below the surface - it leaves me open and vulnerable. And frustrated.
I can't PROVE what I say is correct. I can't PROVE that I understand my mother. And the problem is that they see this as trying to prove that I understand her better than the care home staff who have her pegged in some pigeon hole about elderly people and want to turn it into a 'who cares most' competition (more irrelevance). I THOUGHT we had begun to work with a psychologist who would understand the perspective I was sharing - but apparently not - it's a mental health worker, someone only trained to work at the surface level (?? Can I make sense of that? - NO!)
PLUS I'm trying to get my message across to someone in the care home who is angry with me - for disrupting, for being involved, for being invited to tell them what to do (again, that's how they see it, not what I'm trying to do)! I'm working with someone who doesn't want to work 'with' but wants to exclude and ignore - yes, and squash out of existence. It was unexpected, bad manners, inappropriate, not good working practices - but, hey, it happens!! I didn't understand until too late - and then didn't have the words to put to my inner recognition of what was happening. And by that time, all the other professionals had walked away, not expecting the bad stuff to happen, not believing it could be happening or that it could (all) have had such an impact.
The social worker is most to blame in all this for being a weak link. She saw me being attacked in return for asking a question and pursuing it and then set the standard by not 'calling' them on their bad behaviour; she colluded with other bad behaviour, too. And then she colluded again - after I shared with her what was happening, she went off to make the care home feel better! I think it just never occurred to her that it would have any impact on me. It wasn't that I was irrelevant, I think it demonstrates that she thought I was in HER shoes.
BUT from my point of view, she sided with the bully. What I'd been asked to do, created a crisis. It was the moment to press forward but she stifled it.
If I'd have been stronger, I could have pressed forward myself but the care home manager said things one day, denied them the next, had a conversation in which I thought everything had been sorted and then sent me a letter with an entirely different slant, threatening me, telling me to remove my mother if they aren't good enough (she's the one giving 'meaning' to everything!!) instead of just dealing with the issues raised. And it's left to me to be the one who is supposed to understand THEM, see their point of view, help them out of their self-flagellation...
It was like juggling so many balls and then having them all come crashing on my head - one twist in the tale too many. And yes, I felt hugely guilty. But SHE is the most manipulative person in the whole shebang!!
The only other person who has driven me into this insane corner where my reality is breaking down is my mother.
And she has some form of autism - AS, HFA - whatever.
So what does that tell me about the care home manager?!
If she has the same problem as my mother, I'll NEVER get sanity and reality into our meetings. Whatever is agreed, will just be words and not action.
I would remove my mother but this whole thing has incapacitated me - plus we need the diagnosis to make sure the next care home is ready to help and support her.
And alongside this, I'm struggling with a business where I just can't cope any more with the requirement to be 'out there' and dealing with stuff so I'm definitely doing a lot of negative 'self-talk' on this one!! And I can't do the business because I'm depressed and I 'crashed' due to the care home and the whole bl**dy situation with my mother. I crashed after my father died. I crashed after my mother drove me insane. I crashed after I discovered my marriage was a whole bl**dy lie. I crashed after I was on stupid hormone medication for cancer. I COULD NOT COPE. And it's supposed to be because I can't think straight!??? :shock: I THINK I've just worked myself up into another scream. Aaaaaaaaaaaghhhhhghhhhhhghhhhh. I'm just off to have a good cry.
PS There's also a whole load of stuff that happened where I didn't crash!!! I didn't crash when I discovered I had cancer. I didn't crash when I discovered my son had autism. Knowing me, I'm sure I walked through a whole forest of things that most people would expect to stop someone in their tracks. But I just pick up my bags and walk on, picking up knowledge and people and their experiences as I go...
PPS Actually - I didn't crash when my father died. I stoically shouldered my mother's grief - and it was her behaviour which led to my crash a year later. I HAVE BEEN STRONG AND I WILL BE STRONG AGAIN.
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Hi Rose...
It's really hard to release this stuff, isn't it.
Could you try it? Just as an exercise...
Mother, I release you. I let you be who you are.
Care home, I release you. I let you be who you are.
How about it?
What about if you sit in a serene place, unplug the phone, turn off distractions.
Breathe in and out, just slowly, just repeating it.
Notice your breath, how it fills your diaphragm, then empties.
Breathe, slowly. No goal. Just breathing.
Do that for a little while.
(Thoughts and feelings will race through, they will. Don't worry about it. Just notice them:
there, that was a thought. Let it go...return to noticing your breathing.)
After you feel yourself settle a little bit into some stillness, try it, thinking intentionally:
Mother, I release you. I let you be who you are.
Care home, I release you. I let you be who you are.
Do that for a few minutes.
Then just breathe some more.
Then stretch a little. Go take care of yourself.
Don't worry, things will come back. But maybe do it again tomorrow.
Work it into your days.
See what happens.
love,
Hops
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Hi Hops (ooh I did a typo - your name is close to Hope! :-)) Thanks!!
I have no problem in allowing my mother to be 'who she is'. I am reconciled to her, to it, to the life we have had (and wasted). We had become friends until the care home drove a wedge between us and did so much harm.
I don't particularly have a problem with the care home.
I have a problem with the care home manager - and no I'm not prepared to allow her to be who she is. She damaged me through ego and ignorance.
I have a problem with some of the nurses who played nasty cat and mouse, passive-aggressive games with my mother and refused to recognise that she wasn't just badly behaving (like them and like the care home manager) but couldn't be any different. She was confused and unhappy because nobody understood her - and the glorious thing was that she recognised that fact and was able to articulate it to me. Her consciousness was developing while her body was deteriorating. (Well, autism is a brain developmental delay and being in care homes has forced her to become more 'self' conscious - instead of getting away with terrible behaviour by beating up the 'opposition' all the time - the opposition being me and my father and just about everybody she came up against!) The 'self' consciousness is marvellous and terrible all at the same time
Ooh - a thought has just popped into my head. The nurses could have been kicking the cat - if they have the same problems with the care home manager as they have with my mother...Anyway, I don't 'do' understanding others any more!!!!! The REASONS for their behaviour are no longer relevant to ME and my role in all this.
What I have a REAL problem with is inside my head!!
The way I see the world isn't 'mainstream'. I'm more in touch with the reality of everyday experience than most. I connect at a deeper level. The people I help say things like 'sometimes I think you can see inside my head' or 'I didn't know I felt that until you hit the nail on the head'. (I don't know how to be different except by becoming speechless)
OR...
I've spotted a truth they DON'T want to see. And then they do everything they can to destroy the threat (ie me).
I don't need to prove that I'm right - I can offer a thought and then let it go (except where the caretaking of someone dependent on me is concerned). Even then, I don't need to PROVE I am right - but I DO need people to listen and allow themselves to be open to a different perspective.
And if they don't, and are determined to discredit me, to get rid of me...and other people I trust find it expedient to support them...and other people I trust simply turn their back on me, ignore me, shut the door in my face...
I'm not strong enough (apparently) to hold up (mentally) against the onslaught.
But it's not that easy because I'm not giving in. I'm not going to go under mentally. I'm not going to allow them to force me to give up my reality.
But I don't know how to do that without fighting and struggling. I don't want the humiliation of fighting and struggling in a public arena. But then I'm locked in (to my mind) with no way out, fighting and struggling with my mind, emotions, body. Turmoil. And the added burden is that I can't afford to do this with cancer lurking in the wings and just looking for a vulnerability in the defences to wade back in again. "I can't do this" "I have to do this" "You'll kill yourself" "I won't be annihilated"
One begins to understand why people would die for a cause, for something they believe in. If you don't, you give up...??? You certainly give up hope. Perhaps we give up our reason for living - our MEANING for living.
As I've said before the ONLY other person who has done this to me is my mother.
I experienced it after my father died because I HAD to stay in the relationship to support her. She asked me to and for once I couldn't turn away. The only reason she didn't destroy me when I was a child was because I kept my reality away from her. I finally knew that staying around would mean I'd end up in a mental hospital or dead by my own hand and I spent the rest of my life staying in touch 'barely', just doing enough of the 'right thing' while also protecting myself. Even tho everyone else thought it was ME who was in the wrong for not having a closer relationship.
So...now I know that she screwed up my sense of reality because HER sense of reality is skewed. I experienced the same thing with my husband except I was stronger with him. I met him after I had learned better skills, confidence, my 'self'. But, even so, he was wearing me down, year after year until we all reached a massive crisis and he agreed to go into therapy. And THEN we discovered Aspergers. We could have had a much better outcome if we'd known earlier but it was all too late.
The gift he has given me is his ability to know that he has screwed up my sense of reality. (Gaslighting) He does at least understand and 'believes' me.
So that's what it is. I've defined it. Or I think I have.
And I'm so angry that my therapist refused to offer me a referral to help me when I plunged into this maelstrom. I am disgusted beyond speech. I didn't feel I should be her client while she was going through breast cancer treatment so I had made a choice to leave (I did the right thing and it was brave) but her husband is a therapist too and between them they should have been able to come up with some signpost for me to follow up. Here it all was again and I NEEDED to go into this in a safe place to get it sorted once adn for all. I am sickened by the whole (God WHY do you make it SO hard for me???? I try and try to get to grips with the hand I've been dealt and you just THROW me right back in and then shut all the doors and isolate me) They say that you have to keep revisiting the same thing until you deal with it. I'm TRYING to deal with it.
I'd rebuilt my life - I was still in the process of rebuilding it - and like a house of straw the wolf came and blew it all down.
I don't know HOW to find bricks.
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But apparently I DO know how to find joy!! But that's what the care home insists I give up.
I quote from another thread : And..you know what...it's a GLORIOUS feeling to 'understand'. It's tough getting beyond what AS does to you as a child when the parent has remained undiagnosed but once you get there - there's absolute JOY in understanding. JOY and serenity.
And that's what has made my mother's care home's reaction to my understanding of my mother so difficult to accept : their refusal to validate something joyous and their determination to destroy it.
As part of what I was asked to do for the care home, I produced a particular piece of paper and read through the content to my mother over the phone. She was so absolutely overjoyed. She was crying when she picked up the phone (they'd say she was manipulating me!) but cheerful when I left the call. The care home refused to use it - as part of the process of sending me packing!! That was upsetting but somebody pointed this out to me : I had given her a gift of understanding which nobody could take away because it had happened!!!!!! OK, so the care home staff refuse to use it and thereby signal that they refuse to understand. But my mother at some level knows that she CAN be understood. AND at least some staff will have read the content and it will have had an influence of some kind whatever they 'protest' at the surface level. She does say that I'm the only person who understands her but the care home would say that it's not true. Invalidating sh**heads.
But that's why I can't go back. I'd have to eat crow and pretend with them that I'm in the wrong while continuing to understand my mother 'in secret'. There madness lies. (Because THAT's what I did when I was a small child - THAT's how I coped with the craziness of KNOWING there's something WRONG WRONG WRONG but nobody was going to listen to a small child who can't possibly know what she's talking about) And THAT's where I STILL am today.
I have to have a scream here - Aaaaaaaaaagghhghghghghghghghhhhhhhhhhhhhh
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I hear your deep frustration, such painful turmoil.
I think the emotion itself is what is harming you.
That's why I think meditation...you can continue to assert yourself to anyone (including the care home manager) while allowing them to be who they are.
The thing about assertion is, you learn you can ask for anything.
You just have to release the outcome.
Asking is unhooked from getting. Sometimes they connect, sometimes they don't.
The only half of the equation you can control is your asking.
Deep beneath her diagnoses and disturbances and distress, your mother (the piece of her, of whatever size, that wishes you well) would not want you to be destroying yourself as you are.
It's not something she can tell you, or narrate. But it's as real as anything else is.
Can you draw on that knowledge, no matter what she or anyone else is doing in the present?
Can you draw on that knowledge about anyone real in the entire universe, whether you know them or not, who is sending powerful healing thoughts right now as you read this, that people in your kind of pain are eased?
It's a source. You need a source of peace.
I think that kind of thinking can save you, Rose. Tapping into something much much larger than yourself or your mother or your or her circumstances.
I think you need a practice -- daily -- that plugs you into that.
I think that is what can heal you and save your life.
You've tried everything else. Even if you've tried something spiritual before, now is a different time.
love,
Hops
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Hey Rosie - I hear you. Let's both scream together - I know that knot of frustration, all too well.
And when we've screamed ourselves silly, dizzy and out of breath - think about:
every person has their own reality... what is real for you isn't for me. I have had some of the same experiences you're talking about, and mine are pretty real to me, but the concrete factual details - the he said, she said of it - would be "too much information" and you COULDN'T attach the same emotional meaning to the details and you'd pull out only the commonality of the experiences in my "story" to connect to. That's what all the players in your drama(s) are doing, ya know? Translating a connection - they heard part of what you said - into their reality... what they know, what their experience helps them understand... and they're not hearing everything you said... or you haven't said everything they need to understand - in a way that they are used to understanding. (It happens to me.)
Teartracks posted about "context" awhile back... and this might also be a useful idea for you to apply in your situation. Since everyone has a different role... they understand things/situations in the context of that role... and the situation itself provides a context for the role. There are patterns to this. You don't have to allow yourself to be forced into any role that you don't feel is you, or you're not attached to in some way. You don't have to act according to the "role". It doesn't make you "bad" or difficult... you simply refuse to get hooked into the "game".
By the way - I'm really beginning to like you! :D
I'm also used to being the strong one... the last to sleep... the last to give up a struggle. Lately, though... I'm seeing that isn't quite the whole definition of me; it's more the role I took on in the context of my FOO. I mean, someone had to be the "resident adult" in that situation, after all! But, there was price I paid for that role. I was strong at the expense of my own needs; understanding and knowing my own vulnerabilities... I wasn't comfortable with those vulnerable places; lots of fear there, too. And I don't know how to let someone care for me very well... I'm simply not accustomed to it. I'm learning, right now.
Sometimes there are great treasures in "giving up". I found that if I "gave up" in the right way - I was free of the expectations of the old roles in my head and somehow that freed me from acting "according to role" when dealing with other people. It's still a work in progress. You're right about asking "what to replace the old thoughts" with - nature abhors a vacumn, so you have to think fast sometimes, to come up with something - anything will do - to replace the old thought. It can be quite humorous, even.
You wrote:
PS There's also a whole load of stuff that happened where I didn't crash!!! I didn't crash when I discovered I had cancer. I didn't crash when I discovered my son had autism. Knowing me, I'm sure I walked through a whole forest of things that most people would expect to stop someone in their tracks. But I just pick up my bags and walk on, picking up knowledge and people and their experiences as I go...
So what's the difference between the situations where you were able to "walk on"... and where you think you've crashed? And is it possible that you still haven't, in actuality, crashed... but only FEEL like you have? Because of some "definition" somewhere that doesn't take into account rest, refreshing yourself, taking a breather - a time out for you (a previously unknown vulnerability - or a new one perhaps?) ... perhaps it's the "definition" that's the problem, eh?
Hops' is quite right about the power of releasing the outcome of asking - it's helped me quite a bit, to learn to be ABLE to ask for things I need. Sometimes I even get what I need! :D And when I don't - oddly, it's never been a catastrophe; it's always been OK. It's a very useful - and powerful - concept, technique or tool... whatever it is, it really WORKS.
It sounds to me, like if you can afford it - a week at a spa would be just the thing for you! Good food, nice people relaxing too, and plenty of physical, emotional, and intellectual REST and REFRESHMENT... and ahem! truly: from the sounds of what you have gotten through, with your wit and intelligence this intact - you've earned the badge: "burnt-out" and deserve to take that time-out just for yourself. Wonder Woman and Superman need this kind of thing, too. There's no harm, no foul in just escaping to a nurturing, comforting retreat for a series of days... physical comfort can go a very long way to giving you a boost in the emotional pursuits, too.
But then, ya gotta come back & tell all about how nice it was!! I'm thinking I might just do the same thing, soon.
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I'm hearing, I'm reading, I'm listening - I really am - both of you. I smile in parts. I agree.
But, as I read, what's going on inside...my BODY!?...is an outrageous raging BATTLE. Bash, bash, crash. Grrrrrrr! Bash, bash, crash. Grrrrrrr! ;-) I want to make it louder and bigger. BASH, BASH, CRASH. GRRRRRRRRRRR! The Hulk! fighting, fighting, fighting. I imagine how a small child might deal with something too big for them to manage. Being held until calm by a powerful understanding parent so they can't hurt themselves. I daren't relax my hold until the child is calm - otherwise goodness only knows what damage she'd inflict on body, soul, relationships. She'd probably give ammunition to the people who want to discredit and disown her. I'm angry with my mother too and she doesn't deserve it. And with my cousin for emailing and saying 'I'm almost too embarrassed to write - it's such a long time since you wrote your very long email about the care home but everything seemed fine when i visited' Grrrrrrr! Cowardy custard for not even bothering to reply to my outpouring!! I'm ANGRY with myself for being so stupid - for not realising the care home wasn't 'with' me. Stupid, stupid, stupid. I still haven't picked my jaw up off the floor!!!!! And angry with the social worker for being patronising and complacent. How DARE you leave me to carry this massive weight all by myself. Well I SHAN'T! (Further sounds of crashing as biggest dummy in the world gets thrown out of pram!!!)
PhoenixRising - Thank you for the badge. Holiday sounds good. I don't know why I don't upsticks more often. I'm supposed to be free! (New car and SATNAV first and then my son's visit and then the taxman and then a round of business meetings - that's WHY! Kick, kick)
Hops - The spiritual - I do have some help with this - someone who has a good perspective on life. I couldn't have survived this long without her. I am getting my iPod re-organised (not long had my PC back after a year's absence) so can get back into the habit of daily meditation. I've collected loads I do that. Collect and not 'do'. ;-(
Thank you both very very much for being so considerate and sharing so much.
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LOL! Yeppers, I'll bet the inner child is in a doozy of a tantrum! :D
Sometimes, it's possible to distract them long enough for the body-consequences to chill out...
sometimes, you really do have to hold on for dear life till they calm down.
And sometimes, you can just ask them: what is it you'd REALLY like? Forgot who did what to whom... all that. What is it that you REALLY, TRULY, cross-your-heart-and hope to die want more than anything else in the whole, wide world? Right this very minute???
And if you can make enough space in the thoughts & feelings and listen carefully - she'll tell you.
See the thing is, I've found after years of going through the he said - she said, the drama and the unfairness of it... the answers and the clues to "what the inner child really wants" isn't there in all that. I rewound and replayed it all until I thought I'd go bonkers from it all. I kicked myself for not foreseeing all the bait & switches, all the gotchas AHEAD of time... All because I thought that the clues to working out what "to do" was there. Well, like I said - giving up was part of it. And letting the drama slide away for any amount of time was the "right" thing to do for me - and the inner child. At this place in my process, I think I could safely say that all the details of that drama were irrelevant to truly solving my inner dilemmas.
Except that it was MY drama and all I had to work with, at the time. And yes, I had to get out too. I've written reams; even here - though much of it no longer exists. So: like you, I continually (and sometimes still do) went through the story, or parts of it... looking at it over & over, until like a really bad reality-TV show... a predictable outcome... I even complained here about how sick & tired I was of hearing myself go over the same issues - again. I was truly ready to be done with it...
This might not be the case with you: but I found that when I was completely engrossed in the details of my own drama, I was avoiding something else. I made the drama SOOOOOOOOO important, so time-consuming, that damn - no time left over for me to practice tai chi, eat breakfast today... hurry, rush, run, be overwhelmed & snappy at the first little life-obstacle in my path.
It was by allowing myself that time out... even if it's only 5 minutes of sitting with a cup of tea, at the beginning... that I eventually came to understand that I was simply avoiding dealing with my own inner self - feared it in fact. I'm still quite amazed that I like her, after all is said and done; and she is bucking around a lot less these days. It took lots of time, to build a relationship with her. Lots of journals... where I could write in both voices... all the time, trying to figure out what it is she really wanted and why she had such death-hold grip on certain vices and had mastered self-sabotage.
And yes, I found myself getting triggered by new dramas, periodically. But each time I moved another nano-inch ahead or had a small victory in one area or another. It didn't matter how small... it was the first progress in 40+ years of living. But these time outs are vital to that progress because I have to know what the inner me can tolerate... what she whats... and what she's willing to live with, if together we can't quite get there - this time. No fair kicking myself - or her - if we don't get it right. Life is practice; no one comes into a master of it.
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I did do some of the going over and over it - but not too much - tho it all came back out here.
Trying to identify the moment of 'breaking'...
The feeling of being completely trapped with no way out. Surrounded by blank doors and not knowing what horror (IF a horror) stood behind it. Every one of them risked tipping me over into complete madness. Trapped in a double bind, triple bind, quadruple bind. And no way out. Nobody to defend me. I wanted someone in my corner and there was no-one. There was no-one to trust.
I was not the important one anyway. My mother was. Whatever door I opened, whether or not horror awaited me, I was irrelevant. Nobody was going to be interested in my hurt pride, damaged ego, confusion, pain, horror.
Social worker, solicitor, mental health worker, mental health assessor, care home manager, nurses station, cousin(s), my therapist, neighbours, groups I belong to...
As I turn from one to the other in my mind...
No one is likely to protect me. (My inner strength disappeared when my father died - I think he protected me from afar and I never knew it - he sent me his strength energetically - and I don't suppose he even knew what he was doing - we didn't have a relationship because my mother stood in between us - but that feeling of BEING protected and safe just went when he died. I never noticed it was there til it went.)
So...no protection. Then...who would validate me?
Not a single beeping one of them.
I couldn't trust them to validate me cos (truthfully) what do they know (nothing) plus who believes me anyway-type stuff and most of these people don't even know me or know me well. I'm not relevant to THEM either!!
My friend had disappeared from my life in a puff of smoke.
I was left with my husband, healer and reflexologist and thank God they stood firmly by me and stepped up to the plate - I had to become 'less than', a mess, a caterwauling chaotic mess, swallow my pride and show not just vulnerability but someone with feelings and thoughts almost out of control and going off her rocker. I don't 'do' chaos and mess. ;-) My mother is the one who carries that stigma. Borderline Personality Disorder. That's what I reckon. (But you won't know how I define that label - so it doesn't really have meaning) I don't break. H - H - R (and everyone) have expectations of 'who I am'. But my persona has broken into shards.
Even now, I haven't actually let them see wholly and totally who I am, the pain and the chaos and the mess. I've still been alert and careful. Don't want to end up being sectioned!! (Memories of my mother's constant hysteria throughout my teens - and the secrets which had to be kept - and my schizophrenic aunt constantly being sent off for ECT and pills and the attempts to control her life and her spending - but I now suspect she was AS as well - AS often misdiagnosed as schizophrenia in the old days).
I can either be strong and credible - or break and never regain any credibiity at all ever again (in my OWN eyes). Labelled. Like having been in prison - it goes on your record. I have enough shame already. My self-esteem has been slowly eroded over time - I can't AFFORD to allow it to be destroyed completely.
That's why the anonymity of the board has always been so helpful. Exposure - complete exposure. But not attached to me. I can let it go and leave it here. I can look after it here. It won't follow me and force me to 'be' 'it'.
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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!!!!!
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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.
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I liked all that :D 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!!! ;-)
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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.
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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.
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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.
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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
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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!!!
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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?
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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.
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((((((Rose)))))) Love sent to you, Ami
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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!