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I'll be 55 this August... I've had bronchiectasis for ten years plus this year... End stage lung disease for the past year...been on oxygen for three years... and have I got used to it yet?... nah! I am now waiting for the biggie; a double lung and maybe a heart transplant. I love my life weirdly enough, because I have some wonderful family and friends who are with me every step of the way on my adventures, even though I embarrass them on a daily basis with my unorthodox way of looking at life. Not for the faint hearted!

Thursday, 20 October 2011

A traitor in my mother's midst

Oo there was tears before bedtime today. Well actually there were tears within an hour of getting up out of bed to be more precise!
I had a gentleman around from the Essex county council first thing to talk about my mother's emergency care package and it all seemed to be going well, apart from a slip up that my sister had made where she had overlooked declaring a tiny pension of a £100 a year, so we got that sorted out straight away. But everything else was fine, all the information was there and given, no nasty surprises until right at the end just as he was doing his summary before leaving, which is where the crying started.
The gentleman showed me how much money we would have to pay towards...when my mother goes into a care home while I'm hospital!
My face must have told a thousand words, as the one thing that I had been trying to do which was keep her out of a care home, and I seemed to have inadvertently landed her in one.
'No no no' I cried 'Back up please, what the hell do you mean by that?!' as that was not what we had been told in the first place by the social worker . And although he was trying to tell me that this was only in case they couldn't get the carers to come into her bungalow, I was so distraught by this time and had visions of mother being carted away against her will.
I tried to tell him that A)she would be very distressed anyway when I have this transplant. I know she doesn't understand why and what's going to happen and to be honest, I want to spare her the full answers B) put her in a home when she is upset already and she will deteriorate rapidly and it would be my fault.
So I did what I do best and that was to start blaming myself, because I need this bloody transplant in the first place, so therefore everyone else is suffering because of me and it all came gushing out, all this pent up guilt.
I don't know who was more scared me or him!
It ended with him assuring me that she wouldn't be taken away and me assuring him that I would phone up the social worker tomorrow and cancel the whole bloody thing unless he can assure me: absolutely no home!
I now have a back up plan and luckily my sisters and brother have stepped up and said that they would cover the days when she doesn't have the carer and the cleaner going in, plus we can up the times that the carer goes in and I'd ask my ex to pop in and check on her too with bits of shopping. If it isn't snowing when all the kicks off, then everything should go to plan. If it snows then she will have to stay with one of them or someone stay with her.
Simple.
I now feel drained and feel so awful that my desire to live is causing so many bloody problems.
Every time I looked over at my mother's bungalow today, I felt such a traitor. And while we were playing scrabble this afternoon, I was pleased that she won both times as she really brightened up.
Serious chat with the social worker tomorrow me thinks.

Lots of love Debbie x

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