I am a carer since 2003 for my husband who has PPMS.
I work fulltime as well as carer for my husband and I was advised to have a carers assessment.
All I can say is what use was it. There is nothing they can help me with and the Social worker suggested to me as I knew nothing of it that I could have a carers grant for a household appliance like TV Washing machine etc. I said that would be useful and he applied to the powers that be and it was declined. They said because I worked I could get these things myself.
Why mention it to me I knew nothing about it and he threw me a lifeline then took it away. I feel like I am really alone to care for my husband. The only person that I felt helped us was the OT but I cannot see what input the social worker really has for me.
He said leave it until next year and be assessed again. I said don’t bother I will never ask for anything for myself again and ONLY for my husband.
This year has been very traumatic with hubby in hospital twice this year with UTI’s and my work hours now reduced to help him more, I feel so let down.
No wonder you feel let down. What a waste of your precious time and of the social worker’s salary (which you have the honour of funding as a taxpayer!) It must feel like a bit of an insult that you are encouraged to get an assessment and then find that all they have to offer you are ‘hearty good wishes,’ as my grandfather used to put it.
I’m scrabbling around for a positive here, as I am sure you are, but it is sometimes a good thing to have The System note your existence, even if they have nothing to offer you now. You never know what is around the corner, and it might just work to your benefit in some unforeseen way in the future. Not much fun now, though. Please try not to let it get you down too much. They don’t mean to be worse than useless.
Hi caz, have you thought about Direct Payments at all? I started with this last year and it has made a world of difference to me and my hubby.
I have 3 carers beside my hubby.
One comes 7 mornings a week, to get me up, showered and dressed.
Two others take me out twice a week.
I have one sleepover a week.
I don`t have to pay towards the cost. It is mean tested.
It took 3 years before my hubby would consider having anyone in. I am extremely lucky that is all works so well and I wouldn`t want to go back to how we struggled along before. Hubby thinks it is marvelous, as a lot of pressure is taken off him.
I too am a carer and always asked the same question as you: what the f. are these assessments for if they dont delivery anything. Im sure its just a listening procedure where we are supposed to feel a part of society, a part of the assessments your other half is supposed to keep getting. Its whaffle, a waste of time, space and money. In fact why dont they pay carers for what they do, like a proper wage with holidays included? (not likely is it, ever)
Its all hot air aimed at placating the invisible carer, who still are…now where is my hand?
Government departments have just had a nudge to go out and do them again. I had one a few months ago, got nothing out of it at all. Wasted a few hours of my time if you ask me.
Yes I could cry how I feel like I am in this alone and your grandfather was right about the good wishes but they can stick it where the sun don’t shine…and thats my grandmothers.
We were means tested and we have to pay for everything my hubby has as care not a £1 off the asking price. No we are not rich but this is what they came up with. The dug and delved into our finances and a stairlift was rejected. So yes tried everything and as money is the issue as well we could not have all that. All the best for you though as we dont usually get out of the system what we put in.
My hubby and I have always worked and if I didnt then things may be different…They take both our incomes into account and he has nothing and I work…As I said before I am on my OWN.
Waste of time, there are no positives to be had from this, we have been through just the same,there is no help out there,and you only find out just how dire it is,when you start to ask for any help,the whole system stinks,it really does.
Hi, I am my husbands carer too. We haven’t gone down the assessment route yet to see if we are entitled to anything, judging by your comments it may be pointless as my hubby works from home and I work part time. We are finding things difficult, hubby feels so boxed in as his mobility is reduced we discussed getting a scooter to get to the shops or out generally but they cost a fortune, then where to store it when not in use? Then there’s having a car suitable - thats the tip of the iceberg, there is so much expense it’s scary!
Caz and Jacki you have both made me feel a lot better! We had an assessment for a stairlift, carers and a walk in shower but because my other half works we are entitled to Jack S"!?t. My partner now has to work part time to look after me and we have obviously lost a lot of money a month because of his reduced hours. I have the Atossers assement next month and we all know how it will end. I have seriously thought about suicide because I cannot see what job I could do, now full-time wheelchair user, cannot put on a pair of socks or shoes, cannot hold a pen, need my meals cut up for me because I cannot hold a knife and fork, have to wear incontinence pants day and night because of loss of bladder and bowel control. I am typing this using one finger of my left hand and it takes forever. I hate hate hate this bloody disease and what I have now become. Apologies for rant. Will go to bed now (that is try and actually get in the bed without partners help ie, lifting both my legs onto the bed because I am unable to move my legs at all).
Have you not been awarded any DLA? It certainly sounds to me that you would qualify for the high rate on both mobility and care or is that what your upcomimg Atos assessment is for?
It makes my blood boil that someone who has such an obvious need for a bit of help has to jump through bloody hoops to get anything. Do these people really think that we want to be in this position? For gods sake we’d much rather be well, living a normal life without any of the crap that comes with ms.
Please can you talk to somebody about your suicide feelings, you shouldn’t be made to feel like this. From your post I can only see that you must be able to get some financial help…I don’t know what sort of job you could do without some difficultyand I don’t know what job those stupid atos people think you should be able to do.
Why the hell can’t these people just have an ounce of common sense. Is it really too much to wish for?
If you have paid 1p towards your healthcare; or in your case your husbands; and he is eligible for ‘continuing health care’ which I am sure he is; all the money paid in; whether in a care home or at home; must be reimbursed from 2004.
So don’t waste any time; send an email to your PCT if you have paid part or all. So therefore no one should sell their home to pay a care home; taking it to the extreme.
Good old Martin Lewis; shame he’s a Tory; Martin’s Money Tips [MartinsMoneyTips@moneysavingexpert.com]