Carer who needs a carer

For information and discussion about benefits
I was the main carer for my two autistic young adult children with complex needs and my mother who had become severely sight impaired and has memory and processing problems due to a silent stroke.

My husband has had to take over the physical daily living type care and appointments etc. as I am bed bound with severe fibromyalgia, severe CFS/ME and having investigations for postural tachycardia syndrome and I need carers myself now.

Due to my husband having to continue working and limited social care (even after reassessments) I am having to provide care in terms of encouragement and support with daily life, behaviour and health wise, as well as social care/education/benefits administration with help from carers/my husband, even though all this makes me extremely ill. I still meet the 35 hours required for carer's allowance and if I did not provide this support particularly the safety and well-being of my child I receive Carer's Allowance for would be severely at risk.

I attended my PIP tribunal last Friday, which was adjourned due to lack of time, and the judge was extremely horrible especially regarding me continuing being a carer even though I have no choice and it makes me so ill, most likely damaging my health due to the overexertion and causing post exertional malaise.

I don't know what to do now, do I give up Carer's Allowance even though I have to continue caring, so I have a chance of receiving personal Independence Payments, which I really need financially to support me with the needs my health conditions and resulting disability cause?

The judge also said I should be receiving ESA in the support group but surely that wouldn't be possible if I was receiving Carer's Allowance.

I've tried to avoid claiming benefits and cope without them which is why I haven't claimed ESA and we try to manage financially as a family but my husband is becoming so stressed and ill with all the caring he needs to do that we he needs to reduce his working hours, so we have to find some way to financially do this and I cannot work.

Are there any any other disabled carers out there, who were or are claiming Carer's Allowance and do you get any other benefits?

Sarah, hi - I can't answer your detailed questions about benefits etc etc, but the general advice on the forum is to email the team of experts at Carers UK itself (phone lines are often busy alas), and they will get back to you within a few days.

It's always tricky trying to work out what 'combo' of benefits will actually bring in the most money and give you the most help, so it is important to 'test out' the implications of any decisions you make, and that will be, I trust, what the team of experts can advise you on.

Why do you think the PIP judge was so hostile to you about caring?! I'm wondering whether they took the attitude 'Look, right now, YOU are the ill person here! YOU need help, and therefore those you are helping will have to do without YOUR help, or you are only making your own situation worse!'

IF that is what he/she said, then maybe that is worth thinking about?

You are, sadly, the classic case of 'what happens when the solo-carer for multiple people cracks catastrophically!' (indeed, who cares for the carers?!)

May I ask what the practical set up is with your mum? How much of your time and energy (and maybe anxiety too?) does she take up? Is she still living on her own, does she have professional care-workers come in at all to do things for her, and if not, why not?

Do you think the time is coming when she will NEED residential care, given her limited vision, her declining mental capacity, and her tendency to stroke? Remember, this is not, sadly, about what you and she may WANT, but about what she has now reached the stage of NEEDING?

By the same token, in reverse so to speak, has the time come when your adult children, or at least one of them maybe, could manage in their own supported living? Again, how much care do they need, and are they candidates for supported independent living?

Somehow, you and your husband have to reduce the overall 'care burden' you are both under, and that means, in effect 'outsourcing' the care. In the long term, your mum, inevitably, will reach the end of her life, long before you do - but what are the long term plans for your children, who will, after all, outlive YOU?

It could be that this current crisis is the signal for major change all round, to move you into the next phase of your life, where, ideally, your mum's care until her eventual death is provided by residential carers or, at the least, by incoming professional care-workers, and that your sons move towards what will be necessary for them at some stage in their lives, once you and your husband are no more.

One final point - PLEASE claim ALL the benefits you are possibly entitled to!!!! This is no time for 'pride' or whatever. If you have worked in your life (ie, paid work!), and your husband still does, you have ALREADY PAID IN TAXES AND NI for any benefits you are claiming for any reason at all! The benefits system may be 'much abused' by those who 'have children on the state' etc as the Daily Mail (possibly rightly, who knows?!) asserts, but when their is GENUINE illness and infirmity, as there so clearly clearly is for YOU, for your CHILDREN and for your MUM, it is ENTIRELY JUSTIFIED that the state helps you financially!
Hello Sarah and welcome to the forum.

Firstly I can confirm that you can claim Carers Allowance if disabled yourself - we have had members in the past who claimed CA for looking after a disabled relative and the relative also claimed CA for looking after them !

But I strongly I recommend that you contact the Carers UK Adviceline team as they are the experts on all matters related to caring and benefits and will be able to you advice tailored to your particular circumstances.
Need expert advice? You can talk to the Carers UK Adviceline five days a week, no matter where you are in the UK or how complex your query is. We do benefits checks and advise on financial and practical matters related to caring.

Freephone: 0808 808 7777

Carers UK’s advice and information team based in London is undergoing staff changes. This means the Adviceline is closed on Thursdays and Fridays whilst we recruit and train new members of staff. We will be taking calls on Monday – Wednesday between 10am and 4pm. . You can email or write to the Adviceline and we will respond to your enquiries within five working days.

The Carers UK Adviceline also includes a listening service, there for you to talk through your caring situation with a trained volunteer who understands what you are going through. Available Mondays and Tuesdays, from 10am to 4pm.

If you can’t get through on the phones (lines are often oversubscribed) then send them an email, they’ll usually get back to you within 3-5 working days.
Definitely contact the helpline asap. Then you can share full details of income, your situation etc. They are brilliant, and their only concern is that the carer gets the very best advice.