Its just basic survival: the financial toll of being a carer – The Guardian

Giving up your job to look after a family member or friend may not be something youve given much thought to, but two in three UK adults can expect to become an unpaid carer during their lifetime, according to Carers UK.

About 600 people a day quit work to look after for someone who is older, disabled or seriously ill, and the emotional and financial impact on these individuals can be huge.

While research suggests unpaid carers save the UK economy about 132bn a year, the main carers benefit, carers allowance, is just 66.15 a week if you care for someone for at least 35 hours a week.

Four carers tell us how they make ends meet.

Mary Adeson, 33, is an auditor and lives in London. She has helped care for her mother, Caroline, 57, who has schizophrenia, with her two sisters since she was a teenager

From a young age, my twin sister, Hannah, and my sister Heide, 27, and I have looked after my mum. Shed often feel really depressed. We didnt realise she had a mental health disorder until she was repeatedly sectioned after a number of incidents over the years. We didnt want to put additional pressure on her, so we learned to manage ourselves. We became very self-sufficient.

By the time I was in year 11, I had part-time jobs. Hannah and I had to go to work as mum wasnt able to. We couldnt depend on her to pay the bills, and letters would pile up. Hannah and I just split the costs. When I was at college I worked evenings and weekends and then over the holidays. I always worked while studying.

Now I work full-time as an auditor and still live at home with my mum and Heide. We both handle all the finances. While my mum receives disability allowance, we dont claim for carers allowance. With my salary, I dont feel like its necessary.

Do I feel like Ive missed out on any luxuries? For a long time now Ive always just worked out what my budget is. I know how much Ive got and what my expenses are, so nothing comes as a surprise. I felt more of an impact when I was working during school, college and university. It was difficult paying for accommodation as well as dealing with my financial responsibilities at home. But I just had to find a way to make it work.

I do have to watch my spending, and Im quite mindful about the future. I worry about what will happen if mum gets worse and we need to pay for her to go into a home. Im always thinking about how to make my money work harder: I invest in stocks and shares and art, and I have a pension. I dont have the luxury not to think about it.

John Stefanyszyn, 64, lives in Sheffield and looks after his wife, Joanna, 46, and his niece, Lauren, 20, who both have ME

My wife has had ME since she was 14, but in the past year shes also suffered from pudendal neuralgia. Shes in constant pain and has to spend a lot of time in bed. While a nerve-block injection last June improved her condition slightly, the past year has been very dark.

Im between a rock and a hard place trying to survive. I stopped working as an NVQ enroller about three years ago to care for my wife. I receive a carers allowance of just 66.15 a week. Fortunately, I receive a private pension of 400 a month from my 16 years working in the civil service and as an Investors in People manager. Without that, Id be destitute.

My wife receives employment support and personal independence payment (Pip) of about 700-800 a month. But with outgoings such as mortgage, insurance, car and groceries, we struggle every month. We have to sit down and look at what goes in and out.

A year ago, I thought about redecorating downstairs, but now were struggling to get that done because of the cost. Fortunately the Sheffield Carers Trust managed to sort out a holiday for us to a B&B in Scarborough in October. But otherwise theres no way you can pay for holidays and sustain your life. Without my pension wed be absolutely screwed I dont know how we could afford anything. I try to stay on top of things but its difficult. For the past three years Ive also looked after my niece. Shes in her own flat, and carers go to visit, but I look after her advocacy and fight for her rights.

I spend half my time worrying about money and the other half battling for basics and being an advocate. Its a constant fight for resources across the board, and it takes time, energy and capability. Sometimes its easier to just give up and let injustice walk over you.

I do worry for the future. If anything happens to me, who will look after my wife and niece? You do go through some bad moods, thinking you are better off dead. You dont choose this life. Its not fun, its just basic survival.

Helen, 48, lives in Salisbury and cares for her daughter, Maja, 21, who has Kleefstra syndrome, a rare genetic disorder, and has specialist learning and physical support needs

Maja was born with Kleefstra syndrome, which means she has floppy joints and isnt so stable. She didnt start walking or talking until she was eight. She functions like a four- to seven-year-old, depending on the activity. She can write and has a good vocabulary. Shes really sociable but shes prone to low moods and mental health problems.

Maja attends a specialist college on Monday to Friday, 9am to 3pm. We live on benefits as its difficult to find a job because of the holidays. Last summer Maja had eight weeks off, then theres Christmas holidays and so on. An employer that flexible just doesnt exist. I always try to keep an eye out for a job. I receive income support of 87.60 every two weeks and a carers allowance of 66.15 every week. Maja receives personal independence payment of 350.60 and 588 in universal credit every month.

Waiting five weeks for her universal credit to come through left me in debt. Ive a 500 overdraft now. I dont seem to be able to get out of it. Im recently married but my husband doesnt live with me, so Im financially in control. I pay the bills, but he does help out because he feels like he should but, at the same time, he has property elsewhere and has bills to pay. Its difficult to get a break. I receive income for a carer to come in for three hours a week.

When Maja was 18, I received 43 nights of care per year, and she would go to a respite centre in Salisbury, which she loved. This was taken away in July. Maja misses it terribly. I miss it too. An overnight break is very important for us both.

Im grateful that I live in the UK and that we have a benefits system at all. However, the problem is that if youre a carer like me, my daughters condition isnt going to change. If it does, it will only get worse. What I mean is, there is no cure for my daughter this is a permanent situation. So we live on benefits.

I put money aside for Majas pocket money and her needs, clubs, activities and special holidays, but we cant afford to replace old clothes, shoes or broken furniture, electrical appliances and to generally maintain and upkeep our place. My choice has always been: do I give my daughter a myriad of opportunities and experiences, or use the money to maintain my home and garden better?

Syreeta Challinger, 38, founder of a lifestyle store, lives in Frome, Somerset, and cares for her husband Rob, 42, who is paralysed on his right side and has aphasia and epilepsy after having a brain haemorrhage and stroke in 2014

Rob and I had been living and working in Hong Kong for several years when he suffered a brain haemorrhage and stroke while on holiday in Sydney. It resulted in Rob losing his speech and requiring 24-hour care. As we hadnt been recently residing in the UK, we were unable to claim any benefits for the first two years, and we moved in with Robs parents in Lincoln.

I managed to keep my job and work remotely, but it meant commuting to Hong Kong every three to four weeks. Commuting to another continent is not good for anyone, never mind with what we were going through. I ended up quitting to become a full-time carer.

Over the years Ive applied for so many jobs, but once you tell employers your circumstances and that you potentially require flexible working, youre not such a suitable candidate any more. I did work part-time in a local shop for 8 an hour, but having worked in high-end roles before meant I was probably too can-do for the job.

At the moment, Rob receives Pip of 350 a month, and I receive carers allowance of 66 a week. What are you supposed to buy with 66 a week? It hardly covers a food shop. In the summer we moved from Lincoln to Frome to be closer to friends. Were renting a bungalow, which is doable through financial support from family members and savings from the good jobs we had in Hong Kong. However, were literally on zero now.

The focus this year has been figuring out how to get back to supporting the three of us our son, Grayson, was born in the summer. Rob doesnt receive employment and support allowance any more, as Im attempting to work. A job coach at the Department for Work and Pensions advised that I would be financially better off if I didnt work, but Im just 38 I dont want to be staring at four walls every day.

Im trying to figure out a solution that works around Robs needs. Im excited but also extremely scared about how were going to make this work, but I have hope now Rob doesnt need 24/7 care, his speech is coming back and he communicates through drawings.

In 2016 I launched Moments of Sense and Style, a lifestyle store selling products that align with our story and offering a message of courage, strength and hope. I spend 10 hours a week on it but Id love to market it more. For the future, I want to get on top of the bills and then have a little fun again and maybe take a holiday. Things have been really stripped back for us since the incident.

The proposed closure of UK borders to low-skilled workers after Brexit has caused carers to be dragged into the discussion.

The home secretary, Priti Patel, has been heavily criticised in some quarters for suggesting employers could plug the gap with some of the 8 million Britons between the ages of 16 and 64 classed as economically inactive a cohort that includes those with caring responsibilities, long-term sick and retired people, and students.

Helen Walker, the chief executive of Carers UK, says caring for a loved one round the clock can mean a real struggle to make ends meet. Many carers have to manage on a reduced income, and the majority spend that limited income or savings on the cost of care, specialist equipment or products reducing their financial resilience.

Our research shows that financial hardship worsens for carers the longer they are caring, with double the proportion of carers in debt after 15 years of caring, compared with those in their first year. More than half of unpaid carers save nothing for retirement. This has huge implications for carers and the economy in the long term, with many left drained of money in later life and in need of support from the state and our social care system which in its current form is already creaking.

Carers UK wants the government to increase the carers allowance and allow unpaid carers to earn more and keep their benefit. We must see unpaid carers put at the heart of a reformed and sustainable adult social care system, says Walker.