Tuesday, February 2, 2010

Why do some carers not care?

Not shocked but wearily sad is the way I felt this morning when I saw the front page of The Irish Times. Why do some carers not care? Why is it that people with disabilities, who are so very vulnerable, are treated so badly by some of those in whom we place our trust? I know children and adults in residential accommodation. I also know parents who have made the difficult decision to move their children into such places because they can no longer look after them at home. How must they feel today? As the sole carer and Mum of a 13 year old girl with severe physical and intellectual disabilities, it has been suggested to me that I should consider this as an option. Sometime I do think about it, and the freedom it would bring to my life, and to the lives of Smiley's brother and sister. I am not trying to moan here, just explain. When you have a new baby, you cope with the sleepless nights, the endless feeds, the treadmill of nappy changing because you know it will stop and because babies are just so adorable! Now Smiley is still adorable, and loved by just about everyone who has ever met her, but she is like a baby in almost every other way as well - just bigger. So you get very tired, and sometimes you really really want to get off the treadmill. If I had challenging behaviour to deal with as well, the pressure to put her in residential could be difficult to resist.

But then you read stories like the one in the paper today and your resolve is firm again - maybe that's the idea as resources are so short. Perhaps these stories are fed by the Government to encourage more families to keep on caring at home, even when it seems impossible. I cannot even get my head around the idea that carers would abuse or neglect people who may not understand or be able to talk about what has happened to them. I feel bewildered and deeply hurt that our children could be treated so badly.
I just so hope that Smiley never has to go into residential care. I don't think I could bear it.

12 comments:

  1. Shocking story today. Makes me so mad. Smiley is so lucky to have you as her mom and carer. Other carers who witness this horrible abuse need to be empowered to report them, as if they bully the disabled I am sure they bully their co-workers. Or perhaps cameras should be made obligatory and screened by a third party? Like anything we can't tar everyone with the same brush I am sure there are fantastic carers out there and I know several families who have benefited tremendously by respite care. The right people need to be employed and stringent background checks and references should be in place. Perhaps as a deterrent these institutions should be fined or sued for this breach of trust.

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  2. Fabulous photo, what a gorgeous smile:) What struck me about that article is the lack of transparency in the outcome of investigations. There really isn't anything there to suggest that the complaints were dealth with, let alone taken seriously. Very worrying, especially as we are still reeling from the complaints againt religious orders who moved people around and didn't keep records either!! Jen.

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  3. There are so many issues here. One concern I have believe it or not is community care houses where just a handful of people with disabilities live. I feel that there may be even more opportunities in this situation for problems to occur. I take up respite now about 1 night every couple of months. It's mostly gone well - she knows the place, the other children and most of the staff. Problems occur I think when staff who don't know her are on, even though I always send in a care plan. I think one of the answers is unannounced inspections by some kind of statutory body that is completely separate from the service providers.

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  4. I haven't been able to bring myself to read the article yet. It's just too awful to cope with.
    I was a nurse for many years before I became a full time mammy, and I would be all in favour of cameras monitoring the care that is delivered ( as long as the patient's privacy is protected). Any true professional would not be intimidated by this.
    XXX

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  5. That brought tears to my eyes. I agree that its just so terribly sad that anyone could abuse anuother and especially another who can't stand up and defend themselves. You are an amazing mum and the love just shines from Smiley's face. Hopefully that helps you when times are tougher. xx

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  6. That article is angering on so many levels. Perhaps though, some good will come from it's exposure. God knows though, that these abuses should never have been permitted to occur in the first place. Things need to change and they need to change now.

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  7. i have not read the article, and i don't think i will, i could'nt rest with what i think its about.

    i am so in awe of you for all you do, as with a new born im exhausted and yes im counting the developmental months where it all fades and gets easier.

    i would have to agree with jean that a camera would not intimidate professionals xx

    your an inspiration to so many, and you have every right to think about your freedom and wonder what having it back would be like, i would take no shame
    in that at all

    no one could or would care for your daughter as you do, i dont think youd ever rest easy with someone else looking after her for more than a weekend, i have been offered respite for Luca and i never accepted but i did agree to home share but only because my friend is his home share worker and i know and trust her 100%

    now if they offered to come and take ryli away ?????
    no just kidding but i know how you feel xx

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  8. I too read this article and I was sickened to think that anybody would abuse people in residential care, it struck a chord in me because I had a Uncle who was in care from the age of twenty five when my Nana could physically no longer look after him because of his violent behaviour, no one knew what was wrong with him but I believe he was severely autistic and we just didn't know it. I would hate to think that this sort of thing could have happened him and he couldn't tell anyone about it. You have a very beautiful girl with a fabulous smile and I really do hope you find your way through it. xxx

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  9. Thanks everyone!

    Mammydiaries - yeah more change would be great, we live in hope!

    Coolkid - maybe you are right not to read the article.

    Andra - the story of your uncle shows that things have improved, thank goodness

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  10. I'm with you. Unless you knew that they were 100% better off and happier in res' then you couldn't possibly enjoy a minute of the respite it would afford you.

    I think the solution is to marry an ageing millionaire who won't bother you too much. Get a huge mansion, knock out some walls and install hydra therapy, chair lifts, an in-house physio, and round the clock full time well motivated and interested nurse/therapist/tutors. Who love you and Smiley and want everyone to get along well.

    and then it might work. xx

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  11. Sounds great Hammie! Though depends on how 'ageing' he is...How about a young gorgeous millionaire who plays lots of golf?

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