On Saturday 25th June my baby brother got married.
J was born on 19th may 1988, 6 weeks before my 4th birthday. Sentimentally I still see him as that tiny puce little baby that came screaming into my life. I literally cannot express in words how much I love him. He's my baby and always will be.
Sadly, I wasn't able to be there on his special day.
I have known from the day they named the date, some eighteen months ago, that I wouldn't be able to attend. And yet, like every element of my life, I clung onto as much hope as I could muster.
I lived with the day coming towards me with this burning pain in my chest. I felt guilty (catholic!!) for being in so much pain that it was detracting from my brothers special day. I wish him so much joy and love. He has phoned me with excitement talking about plans for his day, while I silently sobbed. I worried as well that my absence would stop my family from enjoying the day. Catholic guilt is a killer!!!
Running up to the day we all lost count of the number of times people asked "isn't there some way Laura could go, even just for the service?". I know they had the best of intentions and find it so hard to understand how someone can be completely confined to the house. It's not as if I would just suffer after the event. I would die to see my brother marry. Hearing that question made me want to scream - If there was anyway I could be there don't you think I would be?!
On the big day I spoke to J in the morning and once again silently cried as he told me he was heartbroken I wouldn't be there and it was so unfair. I was determined to be so strong but was breaking down at the first hurdle.
Before the service my family (mum, dad, auntie and uncle) came round and showed me their wedding outfits. My mum looked absolutely stunning....breathtaking!! I welled up at the sight of her. As they left every fibre of my being was screaming at me to go with them. I couldn't just sit there!! But realistically I had no choice, I couldn't make it beyond the front door without having a seizure.
My mum took my phone and was sending me pictures all through the day. Each one set off a burst of emotion. Seeing my ratbag baby brother who usually wears jeans that hang well below his arse and any old t shirt was suited and booted in his wedding suit. I couldn't have been more proud. To see him and his bride (S) was overwhelming. He really had become a man. Husband and father. And to think people had written him off as a child, before he was even a teenager, and I hope that they choke on their words and their thoughts. J has grown into an incredible man.
In the evening, J phoned me. He was overwhelmed by my video message that was played at the reception. We were both very emotional and must've said we loved each other about 20 times. He read me his speech and said about me "please raise a humungous glass to my sister L who i know it is killing her not being here due to her uncompromising health". So succinct, it's perfect. In the end we were both crying down the phone.
It was such a perfect day for J and S, I wish I could've shared it with them, but some things in life you just have no control over. I know I was overly emotional, but it was literally the hardest day I can remember. A special thank you to my special Facebook and twitter friends....you know who you are.
My unending love to J and S, love you to death. Congratulations!!! See you after your honeymoon!!
Lou Lou xxxx
Monday 27 June 2011
Wednesday 1 June 2011
Care...
Over the last 24 hours there has been a collective online gasp of horror and disgust at last nights 'Panorama' on BBC1 uncovering the abuse by a gang of carers in a hospital for adults with learning difficulties.
I have avoided watching any of the footage as I know full well it will distress me. Not just because I have a human heart, but because I, as an adult with physical disabilities who sadly relies on carers to meet all my physical needs, but because I have also been mistreated by nurses and carers.
I almost feel ashamed to write this. I'm a strong, feisty and independent (of sorts) woman who doesn't take any crap!! How did I let myself become a victim? How did I not assert myself? Let it happen day after day for weeks and then months on end. I managed to assert myself enough to make sure my family and friends didn't do anything to report the people behind the abuse. It's crazy!!!
My carer was called A. She came to me every evening. Yes, she came into my own home, as a guest, paid to do a job, and mistreated me. She was in control though, of what time she came, what I ate, what I drank. The first lesson I learnt was never to upset her. Once I mentioned she left my freezer open, just to be more careful in future, and she sent me to Coventry, slammed doors, shouted in my face. She kept turning up earlier and earlier so I was having my evening meal mid afternoon. I tried to assert myself but I would just get more verbal and emotional backlash.
A lot of the time she was on the phone to her family abroad and ignored me and my needs. She would also talk about me to her family, especially her husband. Her husband would sometimes drive her around if she couldn't be bothered and knew details about me including the code to my key safe. It made me feel incredibly vulnerable.
She also made judgements about me and very personal and offensive comments about my family, particular my dad, who she seemed to have a crush on. I am too mortified to repeat them here.
As the weeks turned into months I lived in fear of A and would be in tears from early afternoon anticipating her call. I felt trapped. If I said anything I knew the response would be abusive and could last for days and weeks. And when you're reliant on someone for the most basic human needs such as hydration and nutrition you are scared to do anything to jeopardise it.
My family knew what was going on but I begged them to do nothing. It sounds pathetic and so unlike the me a lot of you know, but at the time I was completely controlled by her. And even saying and doing nothing, I couldn't get it right, I couldn't please her. Almost all of last summer she refused to speak to me. But she did communicate with angry glares and growls under her breath. On the rare occasion she did need to speak to me to ask a question her tone was full of anger and distaste I was angry at myself for creating a situation that resulted in her having to ask me a question. Which makes no sense at all!!!
I remember on one occasion she turned up so early my cleaner was still here and one second she would be ignoring me, giving me evil glares, and slamming food and drink down in front of me, the next second she was putting on her sweetest voice and making small talk with my cleaner. It was surreal.
In the end, she just didn't bother showing up one night. My parents had to rush round and care for me themselves and my mum just announced that was that and put in a massive complaint against A. She denied everything and the only change was that she is now forbidden from caring for me again. The management said to me that "you can't get on with everyone" and that they think A is more suited to older clients!!
It beggars belief that this sort of thing goes on, let alone that carers can deny charges of abuse and get away so lightly. I've heard of others having to undergo "retraining" to straighten out their ways.
Carers and untrained nurses are now just as much on the frontline as registered nurses. And yet they remain free and without any form of regulation. Carers should be regulated and live to a code of conduct. No one should have to suffer what I went through or those poor patients shown on Panorama last night.
Thanks for listening to my experience.
I have avoided watching any of the footage as I know full well it will distress me. Not just because I have a human heart, but because I, as an adult with physical disabilities who sadly relies on carers to meet all my physical needs, but because I have also been mistreated by nurses and carers.
I almost feel ashamed to write this. I'm a strong, feisty and independent (of sorts) woman who doesn't take any crap!! How did I let myself become a victim? How did I not assert myself? Let it happen day after day for weeks and then months on end. I managed to assert myself enough to make sure my family and friends didn't do anything to report the people behind the abuse. It's crazy!!!
My carer was called A. She came to me every evening. Yes, she came into my own home, as a guest, paid to do a job, and mistreated me. She was in control though, of what time she came, what I ate, what I drank. The first lesson I learnt was never to upset her. Once I mentioned she left my freezer open, just to be more careful in future, and she sent me to Coventry, slammed doors, shouted in my face. She kept turning up earlier and earlier so I was having my evening meal mid afternoon. I tried to assert myself but I would just get more verbal and emotional backlash.
A lot of the time she was on the phone to her family abroad and ignored me and my needs. She would also talk about me to her family, especially her husband. Her husband would sometimes drive her around if she couldn't be bothered and knew details about me including the code to my key safe. It made me feel incredibly vulnerable.
She also made judgements about me and very personal and offensive comments about my family, particular my dad, who she seemed to have a crush on. I am too mortified to repeat them here.
As the weeks turned into months I lived in fear of A and would be in tears from early afternoon anticipating her call. I felt trapped. If I said anything I knew the response would be abusive and could last for days and weeks. And when you're reliant on someone for the most basic human needs such as hydration and nutrition you are scared to do anything to jeopardise it.
My family knew what was going on but I begged them to do nothing. It sounds pathetic and so unlike the me a lot of you know, but at the time I was completely controlled by her. And even saying and doing nothing, I couldn't get it right, I couldn't please her. Almost all of last summer she refused to speak to me. But she did communicate with angry glares and growls under her breath. On the rare occasion she did need to speak to me to ask a question her tone was full of anger and distaste I was angry at myself for creating a situation that resulted in her having to ask me a question. Which makes no sense at all!!!
I remember on one occasion she turned up so early my cleaner was still here and one second she would be ignoring me, giving me evil glares, and slamming food and drink down in front of me, the next second she was putting on her sweetest voice and making small talk with my cleaner. It was surreal.
In the end, she just didn't bother showing up one night. My parents had to rush round and care for me themselves and my mum just announced that was that and put in a massive complaint against A. She denied everything and the only change was that she is now forbidden from caring for me again. The management said to me that "you can't get on with everyone" and that they think A is more suited to older clients!!
It beggars belief that this sort of thing goes on, let alone that carers can deny charges of abuse and get away so lightly. I've heard of others having to undergo "retraining" to straighten out their ways.
Carers and untrained nurses are now just as much on the frontline as registered nurses. And yet they remain free and without any form of regulation. Carers should be regulated and live to a code of conduct. No one should have to suffer what I went through or those poor patients shown on Panorama last night.
Thanks for listening to my experience.
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