If you've ever said the benefits system isn't harsh enough, you need to hear about my life as a widowed carer

At one point I sent out six birth certificates - one for each member of my family, including my deceased husband – as well as our marriage certificate and his death certificate at the same time: our entire family’s lives confined to one small envelope

My husband, my soulmate for 27 years and father to our four children, passed away on 14th December.  He had lived for 13 months following a diagnosis of incurable, advanced colorectal cancer.

By the time he was diagnosed, it was already too late for the hope of a cure and he was too unwell to continue with his freelance work in management development.  He became eligible for a range of benefits, which got us through the year.  I was already unable to work, having been forced to give up a successful marketing career on the birth of our fourth child, Daisy, who has a rare and very complex genetic syndrome.  As her full-time carer I was being paid £62.10 per week in Carers’ Allowance.

Almost from the moment Andy drew his last breath, those extra supportive benefits we’d had during his illness stopped.  As a widowed parent I became entitled to apply for Widowed Parent’s Allowance, a non-means tested benefit which means that you can still work and claim it (it’s worked out based on your partner’s national insurance contributions).

I duly filled in forms and applied for the new types of benefits, all the while planning a funeral, attempting to celebrate Daisy’s eleventh birthday, and trying to navigate Christmas and New Year.

The Christmas shutdown didn’t help, of course, but I endeavored to send all forms back first class with recorded delivery, alongside the requisite birth, death and marriage certificates. At one point I sent out six birth certificates - one for each member of my family, including my deceased husband – as well as our marriage certificate and his death certificate at the same time: our entire family’s lives confined to one small envelope.

Days dragged into weeks, our paltry savings were whittled right down with the post-Christmas, post-funeral bills, and I started to think that maybe I should take up the kind offer of many friends who were willing to lend me funds to tide me over.

As I spent hours on the phone to various government departments, I pieced together the complicated package of benefits I could be entitled to.  My child tax credits claim was stopped and a new one started on a lone parent basis; I even received a leaflet on how to claim maintenance from my former partner. It seems that the concept of someone in their forties being widowed with four dependent children is pretty alien to some government departments.

Finally, today, nearly six weeks after my husband’s death, there is some light at the end of the financial tunnel. My claim for Widowed Parent’s Allowance has been approved.

And then the bombshell: you can’t be a widow and a carer – at least not in the eyes of the benefits system. It’s a case of one or the other; Widowed Parent’s Benefit cannot be paid on top of Carers’ Benefit, so I must lose one in order to keep the higher payment.

Our situation is being treated as no different to someone who has also lost their partner but does not have the caring responsibilities that I have. But as my daughter’s carer, I am on call 24 hours a day, seven days a week. Even last week, while Daisy was in respite care, I had to cut short a rare day off as she had become ill and needed to be blue-lighted to hospital.

I feel I have been dealt a double blow: I am grieving for the partner I have lost and yet my role as the full-time carer of a very disabled little girl is no longer recognised by the state.

In many ways it’s not even about the money; it’s the fact that my identify has been superceded by that of widow. Why can’t I be both widow and carer? Why must I choose between both? Why is there no room in the system to recognise the reality of my life?

I save the state thousands of pounds by managing my daughter’s very complex needs; I have developed more skills than many qualified nurses. Last year I was caring not just for my daughter but also for my dying husband, and my role has not ended with his death. Now my life has become more complicated: I am a widowed mother caring for a medically complex child.

Our benefits system, while excellent, puts carers at a disadvantage. Carers’ Benefit counts as taxable income, it is not payable if you are earning over £110 per week and it does not take into account if you are a parent carer with a child living at home.

My husband was the wage earner; now he is not here, my caring role has not ended, but I have to be both mum and dad to our children all the time. Simply what I am asking is for recognition of the role I play. I am more than a Widowed Parent; I am a Widowed Parent Carer, and it’s fundamentally very different. A refusal to validate the life I lead is a cruelty I never deserved.