Living as an unpaid carer in Britain: ‘I feel unseen and unheard – and politicians don’t offer much’

WWe are in the hematology department of the hospital and they call my mother in. We go in, sit down and the doctor tells us the results of the test: she has myeloma – blood cancer – but a bone marrow test needs to be done to confirm it.

I almost faint, my heart sinks and I see my mother’s face full of sadness. Everything we hear after that is a blur, but I know it’s going to be tough from then on and I’m about to become a caregiver.

I always thought my parents were fit and healthy and that everything would be fine. Although they are in their 70s, they were still attending schools and teaching last year children to hop and hula hoopso the diagnosis last summer came out of the blue.

It has been a tough first year. Throughout the Asian and Indian community, caring is seen as a given and as daughters we do it because we don’t want to put our parents in a nursing home and they wouldn’t want it either. But I have had to give up a lot to care for my mother. Although I have learned the skills to care for her properly, I have had to turn down paid work which has taken a huge hit on my finances.

I have always lived with my parents and helped them with the housework and managing the bills. I don’t pay rent, but I have paid the bills.

A few years ago I changed careers to become a journalist (I used to work in marketing) and worked hard to break through. When I started I only had €2,000 in savings. Now I hardly earn anything as a freelancer because of the time I spend with my mother.

I want to work to make money and put my mind elsewhere, but I’ve had to scale back and consider other careers to pay the bills because I’m the only one working in my household. Everything has become more expensive and it can cost £100 to buy groceries for the three of us. I want to make sure my mom eats well, so I cook meals from scratch.

My mother gets the winter fuel payment, but the bar is high for other bill reductions. I take my mother to all her appointments – gas isn’t cheap and neither is parking. As my mother is a cancer patient we can park for free at the hospital, but the car park is always full and on the street it can cost £2 per hour.

Applying for benefits was very difficult. It takes ages and a lot of patience. In order to qualify for an attendance allowance for my mother, we received many questions and details about her condition.

They asked for a doctor’s letter, a letter from an advisor and other evidence. Once I got my hands on this and freed up time for my other responsibilities, it took me two weeks to complete the application.

That was last October, but the Department for Work and Pensions (DWP) says it hasn’t received the form. They told me to send it back, but despite a letter from the GP they refused to backdate the payments to November, so we are appealing. (DWP said it would not be commenting on this piece as the appeal is ongoing.)

I recently applied for Carers Allowance – worth £81.90 per week. This is also a long process. Again you will need to provide a lot of information and details that you may not have at hand. You also have to be careful with the earning limit. If you work even a few days you may be earning too much – the limit is £151 per week.

Macmillan, the cancer charity, has been incredibly supportive and has told me about the benefits I may be entitled to and how to apply for them, but there really isn’t much help available for carers like me.

I’ve never owned a property before and there’s a good chance I won’t be a first-time buyer. We would like to move as a family to a larger area. We live in a two bedroom terraced house that needs a lot of work. We are Sikhs and we have to keep our scriptures on the top floor of our house, so one bedroom is a prayer room and my mother and father sleep downstairs in the living room. If I don’t work full time, how will I ever get a mortgage?

I am physically and mentally exhausted. I go to sleep after my mother sleeps and get up before she wakes up. Then it is non-stop all day, checking if she is okay, if she has eaten, taking her for walks if she feels like it and doing everything that needs to be done around the house. My father relies on me a lot and if he has something on I have to drive him there.

My hands are full cooking, cleaning, shopping and taking my mother to her many appointments. The chemotherapy has caused so many other problems that the list of appointments seems endless.

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