I’m in my 23rd year as a full-time carer for my wife. I had to resign my job overnight to look after her and had no idea what I was letting myself in for. There was no training manual, I have no medical knowledge, there was no helpline or support of any kind.
My wife has a mental health condition, arthritis and emphysema and she requires 24-hour care. Being a full-time carer is not a job I would recommend to anyone. Every day brings new challenges that aren’t always apparent until you meet them. It’s like being on remote control all the time, and, like a remote control, your batteries wear out.
For the first 12 years I was alone and didn’t access any support, because I didn’t know there was support out there for me. The word carer was never mentioned to me, and, everywhere I turned, I hit barriers.
The impact of that was utter despair, frustration and anger. I became bitter, and I felt totally lost and alone. Across the country today I know that there are millions of people feeling the same way that I did and who don’t know where to turn.
Despite all the many health and social care professionals I came into contact with, not once did anyone say to me that I was a carer. It was only after caring for 12 years and finding myself fighting for a stairlift for my wife that I came into contact with a local carers‘ support group. Within six weeks my wife had a stairlift that I had been pursuing for two years to no avail.
That was just the start of the support that I had – it was a huge change and a weight was lifted. I finally had someone I could call on to help me with any kind of issue concerning my wife or me. It was as if I’d been in prison in solitary confinement for 12 years and then suddenly made a free man.
So what would have helped? I’m convinced that, if the sort of support I ended up receiving 12 years later had been signposted at the outset, my life and my health would have been much better. Knowing where to get help is essential to any carer.
The opportunity to take a break from my caring role would also have helped me cope much better and would probably have improved my own wellbeing, especially if I’d met other carers – we understand each other.
What more needs to be done? We need better funding and support for organisations such as the charities involved in Carers Week, all of which work to support carers nationwide. We need to give carers a voice at a national level, perhaps through a national carers’ partnership board, similar to the one in Cambridgeshire, which helps shape and streamline the services carers and their patients receive.
A couple of years ago during Carers Week, I discussed this issue with the prime minister at Downing Street. He indicated an interest and pledged to cut much of the red tape that restricts carers during his term in office. Hopefully, we will soon see evidence of this.
I sincerely hope that in raising awareness we can prevent other carers today from experiencing the same difficulties that I faced.
The Guardian by Richard Cross