Its been ages since i’ve done a piece on here so thought i should give myself a kick up the backside and get on and do one 🙂
Lots going on at our place as ever and my next big task is to get rid of all Paige’s old equipment to make way for the new. Our house is starting to resemble a graveyard for wheelchairs and old seating chairs, and our house really isn’t that big. I’ve been a bit down about our house recently….mostly thanks to looking on Right Move and seeing the kind of houses we could have if we didn’t need downstairs facilities. I looked up through floor lifts as an alternative but one independant living site threw up so many negatives about them that it seemed pretty pointless.
Over the years i’ve had lots of people make comments like ‘oh at least you get a load of money of the government (in other words their taxes) and a free car because you have Paige’. Haha it’s a wonder i’m not behind bars because those comments and thoughts make me so mad and then after the anger i’ve felt like just falling apart because anyone who thinks this really has no idea.
My entire life will be spent as a carer to Paige (and Owen in many ways) as well as a mother. If i ever want to leave the house on my own, just to pop to the shop or just out with my husband i will need to arrange care for Paige as she’ll never be able to be left alone, not even when she’s 40. When i take her out i will need to know which disabled toilets have the correct changing facilities for an adult and be aware of how many hours she’s been sitting in the same position. When i wake up each morning my first though will always be to get Paige’s medication sorted and thats just the tip of the very large iceberg.
Money would make a difference to be honest, it would mean i could afford good regular care for Paige, enough for me to be able to work part time etc . However when you consider most carers charge £12 an hour for the type of care Paige requires, then if i wanted to employ someone for 24 hours thats £288 and Paige only recieves in the region of £300 and something a month DLA and then a bit more in my carers allowance. Point is the money cushions not being able to work but thats all it does. It would need to be ALOT of money to make any sort of difference or change to quality of life. The car is great, i’m not knocking that, but my husband can’t use it for work,it is for the neccesity of the disabled person only. So we still have to run another vehicle so Graham can get to and from work. So all this great free stuff you get when you have a disabled child is nothing in the scheme of things trust me. I wouldn’t be without Paige for anything don’t get me wrong but the DLA,CA, and car don’t go anyway towards making caring for a disabled person any easier every day. Because at the end of the day i’m still changing my 12 year olds nappies and feeding her most meal times and it’s heart breaking when i think of what should have been. I get paid £1.22 an hour for being a carer, the tax payers could keep it for all i care because i just wish i didn’t need it and i wish every single day that Paige could walk and we didn’t live under the cloud of not knowing what her condition could bring next.
Anyway rant over.
What else i’ve been up to recently is looking into doing a bit more voluntary work and i found an excellent website htpp://www.do-it.org.uk . It allows you to look up what organizations in your area are looking for volunteers and you can search by criteria as to which type of work and charity you’d be interseted in working for. I’ve applied to one and trying to decide on another. You only need to commit 2 hours once a fortnight to some so it needn’t be a massive commitment which is why i’d be able to fit a little in.
Well i’d best go for now as my Mum will be arriving shortly. It’s fantastic having my Mum work for Paige because it makes Paige so happy and she gets the very best of care, we are very lucky to have mum working for us. We just could really use more in the way of direct payments to afford help in the holidays. I get very little in way of direct payments considering Paige has quad CP and Owen has autism, when it next goes to panel we’ll be keeping our fingers crossed.
Bfn x
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