As a carer, I don’t claim any benefits and have supplemented my state pension by taking a job as a lollipop man. The Government isn’t looking after carers enough.
Andy has been a carer for his wife Veronica since she was diagnosed with ME/CFS more than 15 years ago. Due to her symptoms, Veronica is often bed-bound, and is no longer able to work.
Whilst Veronica can claim a PIP allowance, as Andy receives a state pension, he is not eligible for carers allowance or attendance allowance and has therefore taken a role as a lollipop man to help towards the couple’s outgoings.
“Twenty years ago, when I met my wife Veronica, we had a very different life. We both enjoyed the countryside, hill walking, and camping – anything to do with nature and the outdoors. Veronica would cycle to and from work every day, and we also used to go to the weekly pub quiz with friends. Our lives were active.
One day in 2009, Veronica woke up and couldn’t get out of bed. The symptoms were rapid, and it took two years to receive an ME diagnosis.
Now, I take walks in the Yorkshire Moors alone as Veronica can no longer walk far. Our pub quiz nights are a thing of the past as late nights are no longer an option. On a good day, my wife may be able to spend some time in her wheelchair and that’s when a short trip is possible, or if she’s not feeling as good, we may drive to a woodland where I can go for a walk while she sits in the car in the sunshine reading a book. On bad days, Veronica is bedbound. Every day is different.
Veronica has lived with ME for sixteen years, and I have always been by her side, providing support. At the beginning, after the first year, Veronica began to improve slightly but from there the symptoms fluctuated, and now she is permanently in a wheelchair.
When her symptoms were at their worst, Veronica had to give up a job she loved and took voluntary redundancy. She did recover gradually over the next two years and was able to get back into work in various administrative roles, but the stress of recently losing her job has exacerbated her symptoms and she’s now not able to work.
I retired at Christmas, but while working full-time role, I started early so that I could finish mid-afternoon and be home to support Veronica.
My daily routine ensures that I can be there to care for Veronica. Most days I get out of bed, do the washing up, clean around, have a shower and take Veronica a coffee in bed. Then I go off to do my patrol duties as a lollipop man and when I return, I make Veronica breakfast. In the evenings I make dinner. I do all the housework, which I don’t mind at all, I used to be in the army so I am used to keeping things in order. In fact, I love ironing! I do whatever I need to do, I care for Veronica, and I enjoy doing it which helps.
Understandably, Veronica has times where she has been very upset at not being able to undertake the activities that we used to enjoy together, but we adapt what we do and try to get out in the fresh air as much as possible because it makes a difference to both of us. We live near the coast, and there are lots of pathways that are wheelchair accessible that give us an opportunity to go out together. We are also still able to manage camping trips, and our large inflatable family size tent provides plenty of living space for Veronica to get around.
For my own personal wellbeing, I take our adopted dog, Dudley, out for walks on the beach – this gives me a well needed break from my carer’s role. It benefits us both for our mental wellbeing.
Our niece and nephew live nearby, and they are our support network. They both have cars and can pick us up and take us to appointments.
At the moment, I am capable of helping, caring and supporting Veronica, and I will do it for as long as I can. There may come a time when we have to get someone in to help.
Financially, we’re now unable to do the things we used to do, but we’re ok. Veronica receives a PIP allowance, but I don’t claim anything from the Government as I’m not entitled to a carers allowance or attendance allowance. I get my state pension which pays all the bills, and to supplement that, I have taken a job as a lollipop man. The money I earn helps towards our outgoings.
I’ve seen young carers on TV, and it makes you cry. There should be more support financially or in person to help carers. I don’t understand why carers are overlooked. The Government isn’t doing enough to look after people or support carers.
Veronica keeps saying thank you to me, and I tell her to stop – she doesn’t need to keep thanking me.”
Veronica is the best wife in the world, we’ve been married 20 years, and we never argue; we get on so well.
The ME Association joins Carers UK and charity supporters Age UK, Carers Trust, MND Association, Oxfam GB,
Rethink Mental Illness, and The Lewy Body Society to seek increased visibility and raise awareness
of the inequalities carers face on a daily basis
