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!!!!!
