Results for "The reality of being an unpaid carer: share your experiences"

Showing the last 50 answers

It's like being trapped in a cycle of poverty that starts and ends with the caring responsibility that I received carer's allowance for.

The money is ridiculous I haver been in so much debt. That’s without the physical and mental strain that comes with being a carer. Oh and it’s 24/7 without a break but paid carers get that sort of money a day. It’s very stressful and I would love to go back to work

Dangerous

Scary. Stressful. Embarrassing. Depressing. It’s so difficult to think about the future when you know you’ll never be financially safe.

Very tough and soul destroying

I feel as though I am scraping myself out of a hole every week. I would love to say that I can afford to treat myself to a new pair of shoes but I can't I need to save up for a few months to afford them. How is this fair

Impossible, the majority of it goes on gas and electric bills, there is nothing spare, I have no life.

I am 68, I look after my civil partner, who has stage 5 Alzheimers, owns his house and has savings. He receives Attendance Allowance. I am not eligible for even the carer`s allowance, even my senior pension was refused. My only income is from interpreting on the phone for the NHS and social services, less than £300 a year. My partner humiliates me every day for not being the breadmaker and not contributing financially, however I work 18-20hours daily..

It is incredibly stressful and degrading but because I feel it’s the right thing to do I continue to go above and beyond in my care work to the detriment of my life, physical and mental health and finances. My close friends think I’m crazy to continue. I haven't been out socialising for the last 6 years as a carer as I'm too ashamed to tell any prospective date that I’m a Carer on Benefits as I feel I will be judged and dropped. I'm torn between keeping my job caring for my mum or trying to salvage my career and return to work. I'm thinking of returning work part-time but am terrified due to the criminalisation of carers if they earn a few pounds over etc. as I can’t afford to take the risk etc. I had a successful high pressure career as a temp/contract Legal PA Secretary for over 30+years in the City and was also self-employed as a Massage Therapist but became ill with serious gynaecological problems linked to menopause, which did not get treated on the NHS in time as also had harassment by the Jobcentre. It has also seriously affected my relationship with my mum who has reluctantly given me some expense money. She constantly nags me to pay it back etc which adds to the mental stress of being a carer. To top it all I’m living in sub-standard council accommodation with a longstanding legal case that has still not been resolved after 6+ years. I’m force to use a leaking/mouldy sink and the structure of my flat has been compromised seriously affecting noise pollution/privacy by a new leaseholder in the flat below me.

I am not getting that yet

Have to be careful

Unbelievably difficult

It's not enough to cover food and travel costs

It a joke

It’s not enough compared to if I was working but my partner earns enough that we’re comfortable

It's impossible to live on! My son has PiP and I constantly have to ask for more money from him to cover the basics which isn't what his money is for. I also get UC which is no where near enough to live on. We barely scrape by. I'm considering selling my car as I can no longer afford the upkeep. We can't afford to get a mobility car because it will take too much of my son's PiP and leave us with nothing. If I worked and received the amount I'm allowed to within the limits of Carer's allowance, I'd be no better off. So because of my poor mental health I have decided not to work.

A major struggle

I could spend more than that on shopping alone.. The heating has to be on 24/7 especially in the winter so that puts me in the red before I think of anything else..

It's incredibly demoralising and stressful.

I am married with a daughter, my husband is self employed, his job is weather permitting, ideally I would be in full-time work, the struggles are real.

No money to spend on myself eg a haircut is £35 leaving less than £50 that particular week - every week something

Hard going

I can't live on it I only do it so my mum who is 82 disabled doesn't suffe

Well if you get any other benefits they take pound for pound so I'm getting 49 pound a fortnight income support alongside carers allowance I've never been given any council tax support so I have to pay 60 pound a month council tax and 40 a week rent then there's gas electricity and water to pay for I don't drink or smoke I don't go out socialising some days I can't afford to eat and when I can eat I only have one meal a day i weigh 6 stone.

It’s hell My carers allowance is deducted from income based welfare because the government says that has a couple where one is disabled and other is there carer we only need /entitled to so much to live on the bare minimum We are permanently trapped in poverty I can’t work and care ( I also have mental health problems and my husband is disabled and can’t work

Very hard times

I have to really think about treating myself to things that my friends all take for granted.

Diabolicaly impossible to survive on when I care for my son 24hrs a day and night

Impossible, there's always something that needs sorting. It isn't enough money to even consider alot of jobs because I can't get a car or a bike thst would allow me the flexibility to work elsewhere. Currently we're navigating how we are going to do Christmas. We are constantly choosing between heating the house which in turn has negative effects on my asthma. I have debts hanging over our heads that we're paying £10 a month on each of them for what feels like forever. This all with the expected 30hrs+ of care. It's not even minimum wage let alone a living wage

They give you the £80.90 then take it back from ur esa as it’s an income so we don’t get fk all realy give you in 1 hand take with the other if it’s called an income they should give us minimon wage

There is spare money after heating the home, I’m constantly worried about bills coming in and trying to give my disabled husband all the care and extra things he needs to be comfortable. I’m constantly exhausted from broken nights from worry.

Doesn’t even cover half of the family shopping ever week let alone contribute to any other household bills!

Very stressful to live off this amount of money as I have had to sacrifice my career to be a full time carer .

Every penny I get goes into my house and meeting the needs of my children, both who have disabilities. We have everything we need but rarely get anything we want. I don’t have spare money to set aside to replace anything that needs it and dread any time I need to. My carpets are old and worn and I can’t afford to replace them but caring for my children (pre-teen and older teen) is a full time job with admin, trying to ensure they have adequate education and taking them to appointment so I don’t have time around them to work right now and I’m a lone parent so there is no other money I have coming in except what I get in benefits.

It feels degrading and it's deflating knowing I can't do anything about it as my son has complex needs and requires significant nightime care. I care over 100 hours a week and the money I get equals to a job paying 76p a hour. I love my son and want to care for him but be forced into long term poverty as as result of his disability feels cruel, unfair and unjust.

Desperate, getting further into debt. Feel worthless but stuck in a situation I can not change as my children will have disabilities for life.

Living hell

A nightmare especially when you are a sole carer and you ask for respite for 2 hours a week to get charged by social services 9 months later for 4 hours under my daughters name so she was getting a bill for over 3500 pounds when the care was for me to get respite. The stress this caused and we have just had it waivered as carers association advised us and social services hadnt gone down correct procedures so it was eventuslly waiveredni

I have no idea what my future will be. I have had one evening out in five years. I worry constantly what will happen to me once my mother dies. I've given my life to care for her, but with that I've given up my future. I can't afford to have my hair cut or my car fixed. I dread any bills coming in.

It’s an impossible amount of pay. As a single parent with 4 children two who are disabled it is impossible for me to do any extra work.

Lost my home and find it very difficult

Really hard especially looking after dad with Alzheimer’s

It a nightmare when you got 3 kids

Very hard

Extremely difficult

Get the money in one hand and if you're on universe credit it gets taken out the other hand so you are nothing

very stressful constant worry

i don't because the person who i care for doesn't receive any benefits, so it's very difficult, & i'm trying to get my old invoices paid for, which is proving difficult cos it's coming from sfe

It is terrible you have to watch what you buy! can’t spent to much ! It just is not enough ! What with rent, bills, shopping, etc etc everything has gone up !! & they expect you to live on this amount!!

its all gone on food for thhe week forget haricuts and self care

Showing the last 50 answers

That we are not benefits frauds, scroungers or any other label that often gets applied to people on benefits. People on carer's allowance are among the hardest working people out there because, unlike people in paid employment, we don't get days off. We have to work evenings and weekends, and even better up all through the night, whether we want to or not. We still have to work even when we're sick ourselves because there's no one to help us when we're unwell.

You have to be a very strong caring and passionate person.

You can’t go to work and earn money as your caring for another human 24/7.you have no life and no money.

That the government could pay us a living wage if they wanted to, but it’s not seen as an issue that the public cares strongly about. Anyone who has a loved one that they would take care of if they had to, could be put in this position at any time.

How tough it is

I would love people to stop saying oh You don't pay rent/council tax . You get all the benefits going. no we do not.

It's so hard, it's impossible. I can't even afford my prescriptions so I go without. We are invisible

I know that even I would get it it would be not sufficient.

It is incredibly stressful and degrading but because I feel it’s the right thing to do I continue to go above and beyond in my care work to the detriment of my life, physical and mental health and finances.

I look after my mother and have to give up work to look after her and that is all I will be getting

It is a very small amount

That we struggle

That is hard and is 24/7

It’s less than a quarter of minimum wage, and that’s if you’re only caring for 35 hours which for most people, especially parent carers, is not the case, it’s a full time, often 24/7 role.

It keeps us in poverty. We have no hope of it ever being better for us and it is a daily struggle to make ends meet. As a single parent I have considered all the options but there aren't any! The benefits system is designed to keep people in poverty.

It doesn’t cover what’s needed

If carers came in everyday for a week it would cost more than this. A nursing home would not accept anyone for this price..so why should we stress over finances because we r helping r loved ones..whatever age they happen to b..??

It's nowhere near enough to live on - and it's reliant on other benefits to boot. When my wife's PIP was (incorrectly, it turned out) stopped, I lost my carer's allowance despite still being a carer.

Being a carer is emotionally and physically exhausting. Struggling to pay bills and juggling priorities causes even more mental health problems in what is already a challenging environment. Cant afford nutritious food, can't afford health bills like dentist or prescriptions, it is a hard job and added worry causes so much extra anxiety

We darent turn heating on most of the time, struggle with food shopping, providing monet to help with daughters education.

Exhausting worrying about money no way could I hold down a job!

I do it because I love my mum an want her to be happy and cared for t her to be h

That where not actually loaded no one else would work for 35 +, hours a week for that amount

Carers allowance is classed has a income it is deducted from income based welfare carers allowance Need to be increased but Equally important carers allowance needs to be stopped being deducted from other income based welfare . Otherwise wish carers like me who can’t work and care who rely on income based welfare will be permanently on the poverty line because we will permanently only receive the minimum the government says we need to live on

Not enough money to live on people struggling

There is no private pension to look forward to at retirement. In fact, there’s no Carer’s Allowance either when that comes. In 8 years’ time will my Carers’ duties have suddenly stopped as well? Whilst those around me have been able to have careers with a private pension look forward on retirement, I have nothing.

I don't know anyone who could live on this amount and then to have my uc to minus the carers that I get

It's not easy and I also feel a level of guilt living on carers allowance

How hard it is all ways feeling aloan

It’s extremely demoralising and exhausting with the work load of looking after a disabled husband. I’ve been looking after him for the last 23 years. The carers allowance is so small it does not help pay the extra bills or allow me a few hours off a week. The cost of living is so expensive now, trying to pay for heating alone is prohibitive l.

It’s very stressful especially due to the living crisis we are facing . The heating bills are so high . I would love to do move social activities for myself but that’s impossible as my money has to contribute to household essentials and bills .

Just how isolating and restrictive it is. I can’t work a full time job because of my caring commitments and I can’t do anything to improve my income. As a family, we cover the essentials and have nothing left over for anything else. If I were to get someone else to care for my children, it would cost the government a lot more than £81.90 a week and I would have to contribute to it as well. If you only care for 35 hours a week (in reality, it’s a lot more usually), it’s the equivalent of £2.34 an hour. That’s not fair. It’s also abhorrent that you can only claim for one person. I care for 2 people and am often awake overnight with one or other of my children and much of my waking time is dedicated to getting them what they both need. It’s exhausting and I don’t have a life outside my role as a parent carer

Thats there is no choice. I cannot work and I didn't choose this. I want to care for my son but I do need support to do it.

uation. Life is extremely hard fighting the education system the health system and meeting needs of my disabled children as it is without the added stress of poverty. And I'm fed up of being treated the same as people who don't want to work for no reason. I may be unemployed but I work 24/ 7 as a carer for 3 people.

Years of being financially crippled, being mentally, physically and emotionally exhausted, being unable to go out to work and earn those extra hours wages when an unexpected bill comes in is really tough. People putting so many demands on you with there expectations and being treated awful by the job center as if your a fraudster

You are house bound 24/7

Yes

It takes away any hope, any possibility of a normal lie or future. You consider every penny that you spend and it is on your mind at all times.

Depressing and impossible, it is a constant worry about money

You never know when you are in a situation were you have to give up work to become a carer,it’s a job I really do not mind but financially difficult

It’s ridiculous I get more taken off me than what I earn as a carer universal credit take more off me than the carers allowance, so I’m literally being a carer fore free.

We are caring for a loved one for £2.31 per hour

The government is breaking its own laws by minimum wages and also if you get universal credit, you lose the carers they give it in one hand then they take it away Universal credit

i look after husband 24/7 i would love to get a job so we had better income but i can’t i didn’t ask to be in this situations but take my vows seriously in sickness and health

it's impossible, but even more so when the person you're looking after doesn't get any benefits, cos you're then having to try to rely on them to pay you something

You get paid peanuts really not a lot at all!!

as an unpaid carer for over a decade when you have to pawn your smartphone to make sure you can sruvove and you get blackisted or credit files gets messed upa as miss payments etc

I care for my son 24 hours a day, 7 days a week, I co-sleep with him, even when he is inschool my time is taken up with advocating, attending meetings, completing forms and the basic management of daily domestic needs. I have no time for myself, I have to prepare and battle for every need of my child to be met by the required support, health, therapeutic and educational services. I have to research and educate myself about my childs complex issues and needs in order to advocate for him effectively. I do all this on an income that doesn't scratch the surface. I wish I could work but I can't. I cannot buy myself clothing, shoes, toiletries, social events. Its a very lonely stressful existence exacerbated by my growing debt and financial worries.

How poor you are treated compared to other people on benefits

its a huge struggle on top of caring for someone and you have to make choice to look after them ot work.