Life as an unpaid carer in the UK: ‘I feel unseen and unheard – and politicians don’t offer much’

Minreet Kaur turned down work so she could care for her mother, who had been diagnosed with cancer. Photograph: Linda Nylind/The Guardian

We’re in the haematology department at the hospital and they call my mum in. We go inside, sit down and the doctor tells us the results of the test: she has myeloma – blood cancer – but will need a bone marrow test to confirm it.

I nearly faint, my heart sinks and I can see my mum’s face filled with sadness. Everything we hear after that is a blur but I know from that point things will be tough and that I am about to become a carer.

I’d always thought my parents were fit and healthy and would be fine. Even though they are in their 70s, just last year they were going into schools and teaching children to skip and hula hoop, so the diagnosis last summer came out of the blue.

It has been a tough first year. Across the Asian and Indian community caring is seen as a given and we as daughters do it because we don’t want to put our parents in a care home and they wouldn’t want this. But I have had to give up a lot so I can look after my mum. While I’ve learned the skills to look after her properly I’ve had to turn down paid work which has meant a huge hit to my finances.

I’ve always lived with my parents and helped them to run the house and manage the bills. I don’t pay rent but I have covered the bills.

A few years ago I changed career to become a journalist (I worked in marketing before) and I was working hard to break through. I had just £2,000 in savings when I started. Now as a freelancer, because of the time I devote to my mum, I hardly earn anything.

I want to work to earn money and keep my mind off things, but I have had to scale back and to consider other careers

I want to work to earn money and keep my mind off things, but I have had to scale back and to consider other careers to help pay the bills as I am the only one working in my household. Everything has gone up in price and it can cost £100 for a grocery shop for the three of us. I want to make sure my mum eats properly, so am cooking meals from scratch.

My mum gets the winter fuel payment but the bar is high for other discounts on bills. I take my mum to all of her appointments – petrol isn’t cheap and neither is car parking. Because my mum is a cancer patient we do get free parking at the hospital, but the car park is always full and on the street it can cost £2 an hour.

Applying for benefits has been very hard. It takes ages and a lot of patience. In order to qualify for attendance allowance for my mum we were asked lots of questions and details about her condition.

They asked for a doctor’s letter, a consultant’s letter and other proof. Getting hold of these, and finding time around my other responsibilities, meant it took me two weeks to complete the application.

Macmillan, the cancer charity, has been great, but there really is not much help out there for carers like me

That was last October but the Department for Work and Pensions (DWP) says it didn’t receive the form. They told me to send it again but, despite a letter from the GP, they have refused to backdate the payments to November, so we are appealing. (DWP said it wouldn’t comment for this piece because the appeal is ongoing.)

I recently applied for carer’s allowance – worth £81.90 a week. This is also a long process. Again you need to provide a lot of information and details you may not have at hand. Also you have to be careful of the earnings limit. If you’re working even just a few days you may earn too much – the threshold is £151 a week.

Macmillan, the cancer charity, has been great in offering me support and telling me about benefits I might be entitled to and how to access them, but there really is not much help out there for carers like me.

I have never owned a property and the odds are stacked against me becoming a first-time buyer. We would like to move somewhere bigger as a family. We live in a two-bed terrace house that needs a lot of work. We are Sikhs and our scripture is something that we must keep on the top floor of our home, so one bedroom is a prayer room and my mum and dad sleep downstairs in the living room. If I am not working full-time how will I ever get a mortgage?

The election is around the corner and so far, I have not heard much about carers from the Tories and Labour

I am physically and mentally exhausted. I go to sleep after my mum is asleep and get up before she wakes. Then it is non-stop all day, checking she is OK, has eaten, taking her for walks when she is up for it, and doing everything else that needs doing around the house. My dad relies on me a lot and if he has something on I have to drive him there.

My hands are full cooking, cleaning, doing the shopping and taking my mum to her many appointments. The chemotherapy has caused so many other issues that the list of appointments feels endless.

The election is around the corner and so far, I have not heard much about carers from the Tories and Labour. The Lib Dems have said they will do more around care but this isn’t enough. As an unpaid carer, I feel unseen and unheard.