BAFFLED BY CARERS ALLOWANCE

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I am a 24/7 carer for my husband, I am 72 years old and cannot claim for Carers Allowance because I get a full state pension. 

What I cannot understand is that if I wanted a day off for a break I would have to pay for a carer by the hour out of my own pocket.

I have looked into it and you have to earn less than a certain amount before you can claim Carers allowance, so by getting a state pension I am over the income limit.

If I walked out of the house tonight and never came back my husband would be taken into a care home and looked after by the government, costing thousands of pounds, so why can't they give me a measley £60 odd per week for me to pay someone so I can take a day off.

I never stop, I have bought walkied talkies so he is in constant touch with me when I am making meals in case he needs me otherwise I am up and down the stairs, I have to shower and dress him. Make all his food etc.  I will always look after him but I need a day off once a week for myself, all my friends have gone, I see no-one from one day to the next, my sons make a flying visit and I am making meals and cups of tea for them. They text me asking how their dad is, never ask about me.

On the leaflets it states Carers allowance is NOT means tested but that means your savings are not taken into account but your income is.

It is about time that carers got what they are entitled to, if we all downed tools there would be one hell of a mess, and thousands of patients would die because there was no-one to look after them, they would be put in hospitals, care homes, that is if there was room.  The government need to think about that instead of giving money left right and centre to people who have never paid a penny into the coffers in their life.

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  • Posted

    Hello Sheila,  

    I'm so sorry to hear about your situation, the benefits system is a difficult thing to contend with. 

    I don't know if I can help at all, but through Job Centre Plus I get to claim extra money to pay for a carer, so I'm wondering if there is any way for him to claim the money to pay you. 

    Also, can you get any assistance via Adult Social Care (accessable via your local council), Social Services, and your District Nursing Team or any other help that your GP surgery should be able to advise you about and possibly refer you to? 

    I'd also be inclined to look into local charity and voluntary organisations. 

    There should be carers support groups in your area that may be able to offer you advice and support. 

    All best wishes

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    • Posted

      Thank you so much, I even wrote to my local MP, she got in touh with the benefits office and all they did was send me the forms (again) which are no help at all.  It is just so annoying that we, carers, give up our lives to look after the ones we love (and so it should be) but because we have  a few savings that take us above the benefit claiming threshold and receive a state pensions I am told I cannot claim carers allowance.  My husband gets Attendance Allowance in his own right but if I was taken ill and could not look after him for a week he would either go into hospital, respite or a care home until I was well and I would not have to pay for it.  If I was dishonest, I could say I was ill just to get a fedw days to myself but I am not like that, I just want what I and many other carers deserve.  The £68 per week carers allowance is a joke, who would work 35 hours a week for that kind of money, no-one.  I do NOT want paying for looking after my husband, I just want the money so I can pay a carer to come for a day or two now and then to give me time off.  I have two sons who visit but they have their own lives so I just feel as if I am left on my own without help.  My husband has just been in hospital with acute respiratory failure, pneumonia, carbon dioxide poisoning and nearly died (he has emphysema/bronchiectasis and is on oxygen 24/7). When he came home  was finding the settings he was supposed to use when at rest was not enough and he was struggling to breathe  so I rang the community respiratory team to ask if I could tweak it up a bit to give him some relief, they told me that they were not an emergency service and to ring the hospital, I told them the hospital had told me to ring them but they said there was nothing they could do. In the end I just put the oxygen up half a notch and that helped him. Our Matron rang the respiratory team to see why they could not help me but I have  not heard anything, I would have thought that after my husband had nearly died  because his body was not getting rid of the CO2 someone would have re-assessed him so he does not have to increase the oxygen on his own willy nilly. I just feel that no-one cares because we are old, my husband 68 and I am 72.
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  • Posted

    Hi sheila can you not claim attendace allowance do you have a local advice centre your local council may have some phone numbers for you so sorry to hear your having such a hard time I wish you luck also look on the [link removed] site lots of information on there Eileen

    Moderator note: Link above removed as it doesn't work. More information on Attendance Allowance at https://www.gov.uk/attendance-allowance/overview

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  • Posted

    Hi Sheila not sure I can offer official advice but just wanted to say I'm sad that it has come to this situation I agree if you were unable to look after your husband social services would have to act but why does it have to come to that, my mum has COPD and is 84 she had a really bad virus two years ago and was hospitalised for three months and she came out of hospital a different person she lost her mobility and now never leaves the house she's angry and difficult at times almost childlike she wants someone to be with her 24 hours a day, I have four siblings and two live near her and they feel like it's all left to them, and although I do understand if I lived nearer I could do more but I have difficulty in spending time with her because she's not like my mum anymore she has always been very close to me she came every weekend but now she wants me to go there I go up to see her weekly and call her everyday but it's nit good enough she is deaf but refuses to wear her hearing aids so we all have to shout all the time so normal conversations are out of the question. She could have carers coming in but she would have to pay herself for them I think because she has family they expect yes to do everything for her but none of us can live with her I'm at my wits end but just wanted to say I really feel for you as  is so hard when a loved one is unable to have a normal life and needs constant care sometimes it feels like when we have saved a little for old age we are penalised by doing so.

    take care sheila

    Sue

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    • Posted

      Thank you so much for your reply, I know there are more carers out there in the same position and get no help at all.  I just hope your mum realises how much you all love her.  Best wishes.
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  • Posted

    Hello again, 

    Have you visited the Disability Rights UK website, or contacted Citizens Advice. They claim that if you're on a state pension, but are also a carer, that you should be eligible for a 'top - up payment' which should be added to your pension. 

    Also, have you put in a claim to the Department of Work and Pensions for P.I.P?

    I'm a part time researcher and am using some spare time to look into this for you. 

    Best wishes, love and * hugs *, 

    hanb

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    • Posted

      Thank you so much, yes been there done that, it all comes down to the fact that we have too much savings, although Carers Allowance is not means tested, I get a state pension which is above the limit for claiming Carers allowance.  P.I.P. (the old DLA) is for people 65 years and younger  we are 68 and 72 years of age, and the top-up payment IS means tested, so cannot win any way. But thank you for your efforts, they are very much appreciated.
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  • Posted

    Hi Sheila what an awful situation you are in and I do emphasise.  You have had some good advice though and I hope this helps.  Carers like yourself save the country millions and should be looked after better.  

    You say your husband does get attendance allowance.  This shouldn't be means tested and should be enough to pay for a few hours respite surely?   Have you sat down with your family and fully explained the situation to them?  Do they understand how hard it is for you?  Maybe you need to get a bit tougher with them and insist they provide more assistance with your husband.

    One point though if the Government saved money on not giving it out to others in need it wouldn't go to people like you.  They would just give it to their millionaire friends or for their own pay rises.  x  

     

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    • Posted

      The Attendance allowance money goes into the pot and helps pay our heating bills as we have to have the heating on 24 hours a day, it has been a godsend this summer with the hot weather has we have not had the heating on during the day but normally our bills are over £400 per month which we pay by direct debit, we have changed our tariff and it came down to £250 per month but with only our state pensions and the attendance allowance it takes quite a chunk out of our income each month as we also have our rates, food, water, tv licence so we do have to dip into our savings to pay for DIY work and gardeners as we have a large garden. Hence the reason for my complaint about not getting carers allowance, because if I had to get a carer in for a few days if I was ill, it would cost me a lot of money. I cannot understand how the government thinks someone will care for someone for 35 hours a week for £68. Okay he is my husband and I do it for nothing, but if he was an acquintance, there is no-way I could look after him for 35 hours a week for £68 in fact I would be stark raving mad to do so.
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  • Posted

    I agree totally.  I think the carers allowance is far too low and the sytem would collapse if all these carers who do it out of love packed it in.   

    I still think your family should help more though.  Do they know what a strain all this is putting on you?   

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    • Posted

      I know what you are saying, my son came the other day at about 2-30 ish, he brought my granddaughter with him, the first thing she said was, I am hungry grandma, I asked my son if she had had dinner and he said no, he thought I could make them something. So I had to make meals, my son was sat upstairs with my husband and I had to carry the tray of lunch upstairs to him.  I don't think they are selfish, they just do not think, I have been doingt hings for them for so long, they think I am wonderwoman, my husband is the same, no-one seems to realise I am a 72 year old woman and not 30 anymore and would like to be looked after as well.  My life for the past three years has been, (apart from a couple of hours out every so often with my husband on his scooter), four walls.   Thank you so much for caring.
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  • Posted

    I think that is it - they don't even think about it.  But they aren't mind readers love you need to have a serious talk with them and make them understand that you are now 72 and are getting tired and need more help to cope.  

    Don't complain to them just explain and ask them for help.  Tell them it's wonderwomans day off!  x

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    • Posted

      You are so right, one of my friends and my brother-in-law was just saying the same thing the other day, they said, Sheila, open your mouth and tell them you need some help.  I used to be a carer for my mother who died when she was 86 and I was 56, and to be honest, I never, ever wanted to put my sons through what I had to do for her, my life was not my own, and I think that is why I give them leeway, as you only have one life and I want my sons to enjoy theirs for as long as they can because they never know what they will have facing them in the future.  Thank you so much for your kind replies. xxxx
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    • Posted

      I am always right Sheile smile  

      I don't think your sons lives would be improved at losing their mother because she is overworked and tired?  Think about it.  x

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    • Posted

      To be honest, I sometimes wonder if it would matter to them whether we are here or not,  perhaps it might matter to one son.  I always receive texts, Facebook messages or voicemails, hardly ever a call.  Even when I ring them it always goes to voicemail.  I have told them that one of these days they will get a voicemail saying one of us has died and the funeral was yesterday, so sorry you missed it but we could not get hold of you.  When my husband is rushed into hospital time and time again I cannot get hold of anyone, I am too upset to try and text so just leave a voicemail.  Okay they do ring me back but my phone is turned off as I am in A & E.  Then they start texting me, I hate texts so I have to go outside the hospital to ring them, I can do without the hassle, they know how things are with their dad and that their phones should be turned on, if at all possible, at all times, but during the night, they should be on all night.  Thank you once again.xx
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