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Tony
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# Posted: 4 Mar 2008 04:28
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All i am going to say is that i think this is a great site and i wish all the people involved the best of luck, unlike some individuals who seem to be negative about any other persons efforts.
To the people who run this site please continue to do the good work that you are doing, dont let the negativity of certain individuals put you off, they want you to fail, keep strong, this site will go from strength to strength.
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PaulaH
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# Posted: 4 Mar 2008 08:15
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If I had a choice, I would prefer my son did not have the illness he has. The choice to care or support him is not negotiable as far as I am concerned. This is where carers are held to ransom, I wouldn't trust the local authorities to care for him full stop.
I feel the same about my Mum - I wish she still had her sight and could enjoy her twilight years. She looked after her parents and worked as a 'home help' before she retired, she deserved a better quality of life after all the care she'd given out over the years.
I promised her I wouldn't put her into residential care, almost 21 years later I've managed to keep that promise - not without major sacrifices, I had to give up my job to care full time and my own health has suffered - but as Pam says, I wouldn't trust the system to look after her.
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Tony
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# Posted: 5 Mar 2008 06:05
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When you love someone, sacrifice of ones own needs is not difficult.
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Anonymous
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# Posted: 5 Mar 2008 21:01
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I've had to give up on having children, I've given up my freedom just to go for a walk or to have a whole night's sleep. I frequently can't do things I would like to do, for instance a workshop for writers this week because my respite has fallen through. I am trying to hold down a part time job but even though I only work 8 hours a week and it's flexible I struggle to fit everything in and am wearing myself out trying to have a little bit of life outside caring. I frequently feel overwhelmed and feel panicked by the thought of everything I've got to do. I've cared 24/7 for my husband since I was in my twenties, (18 years - virtually my whole adult life). I'm also supporting my mom and for the last few years have been helping my mom care for my uncle. (who died last year).
I asked my husband to marry me before he was ill. If I had known what would happen I would still have asked him. Has it all been worth it? Yes a million times because I wouldn't be without him. Have the sacrifices been easy - no, a million times no.
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Frances
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# Posted: 6 Mar 2008 01:58
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I asked my husband to marry me before he was ill. If I had known what would happen I would still have asked him. Has it all been worth it? Yes a million times because I wouldn't be without him. Have the sacrifices been easy - no, a million times no.
Thank you for posting this. I was wondering if there is any way that the government attitude or the care system could be changed that would have helped you in the past or would help you now? If there is anything that would help you perhaps you could post your experience just as you have it here as a separate testimony and tell us any changes you would like us to work for.
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Anonymous
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# Posted: 10 Mar 2008 21:29
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Hi Frances
I'm not ignoring your request just giving it some thought. Of course some of the 'sacrifices' are a question of adjusting your feelings and attitude and have no government solution for example not being able to have children. The financial penalties of caring and the loss of freedom for example to sleep or go for a walk on the other hand could be made easier with the given the politica; will. I think on this some more
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fred
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# Posted: 16 Jul 2009 14:58
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I work for a care company and the money we get is not worth the job we do, we are told to cut corners so it does not cost the company money. When we are doing end of life care we are told not to bother much because they dont have time to complain and if the families do management f**k them around and cause more upset by canceling care and not telling them so the poor service users suffer. When will the government relise that the best care is done by the family and not by companies. WE NEED PAYMENTS TO HELP!!!!!!!!
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james
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# Posted: 6 Sep 2010 18:14
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I am a career and for 20 years plus's its my nature to help people once for a disable woman that was wheelchair bound high rated disability her life was TV remote and phone I many times push her wheelchair so many miles I could not count them take into account she was 17 stone and myself only 9 and a half and I took her every where even days out my social life was nill. after 15 years she die then in side a few years I myself became disabled in a low rate I have back hip and feet problems that put me in to depressions ,I now look after my wife for the last 5 years she is high rated disability ,I have asked on many times to the government about career and what help is for them I think its about £30 a week for doing 35 hours or more a week or should I say that's the minimum I can get but took into account that's because my wife has a 2nd pension but we do get a bit knocked of are council tax so what about me and many more like me that is care but not 35 hours try 16 to 20 hours a day times that by 7 take in to account had broken sleep when needed in the early hours should there not be different levels of careers ?????????? if any government personal is reading this I like to know if that's a fare question to ask I know that we careers do save the country many ££££££££££ but is £30 fare to people that do very much more than 35, lets say more than 100 hours, more than 130 hours, I have been told by ica until we do an grate job but its not a grate wage for the higher hours people put in to caring, my wife is often in bed for 2 to 3 weeks and cannot move or get to the toilet we have a commode near the bed to make things easer, how much does it cost to keep someone in hospital for 3 weeks at a time ????? is it more than £30 a week ?????????i have had help to write this and would be very interested i what other careers like me have to say my email is johnjoss35@yahoo.com
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Laura
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# Posted: 7 Sep 2010 11:14
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I would like to second everything Cathy has stated.
But I would like to put my view forward on whether people choose to care.
When I was 20 I had a few basic dreams:
My own home
A good career
A husband and lots of children
A sense of happiness.
I'm 34 and still have those dreams - but I have watched the years pass by without coming close to achieving any of my dreams. I worked hard throughout school, college and university so I could have a career. I got fired from my job as a tea lady three years ago because caring for my son meant I missed my shifts and turned up to work exhausted and drained. The last in a long line of dead end jobs I had to try and balance paying our way and working around my son's care needs. I have a 1st Class Honours Degree and it breaks my heart that I can't use it, I can't provide a better quality of life for my child. I feel like my life and my identity is slipping away. I watch my friends leading a "normal" life and it hurts so much. My home has become my prison, my life revolves around my child and I wonder where the young woman I used to be went to.
Did I choose this? No. Would I change this? In a heartbeat, but for the small fact that doing so would turn my child's life upside down and have consquences that would last his lifetime. Oh and the small matter of guilt which would be unbearable.
You don't choose to be a carer, just as you don't choose to love someone. You can't turn it on and off. You just have to live with it. The only thing that makes me more angry than people thinking caring is a choice, is a goverment that has used emotional blackmail to force people to go beyond breaking point to take care of those they love. Well actually that's not entirely true, recently it's a government composed of people who sang the praises of carers when they needed their vote, then lumped them in with the "benefit scroungers" to save cash. Anyone remember the "carers save the government £87 billion pounds" quote from Nick Clegg?
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