Carers get thrown into a confusing world of forms and appointments

I finally discovered the help I needed after a policeman found me crying at the side of the road. I had been caring for my husband for some time but I didn’t really think of it in that way, I was just looking after my husband – this is just what you do for the people you love.

I had become overwhelmed trying to juggle everything and realising I needed help but with no idea where to go or what to ask for. You’ve suddenly entered a new world of forms, official looking letters and doctors’ appointments. In the beginning it can leave no time to take care of yourself or to try and work out what you’re supposed to do – you need help with that. It’s like a new job with no training.

‘A lot of it is about pride’

I remember at a really low point when things had got bad at home my husband reminded me that it’s “in sickness and in health”. I can laugh about it now, but the truth is, when it’s a member of your family, you can become really isolated because you don’t like telling anybody that you’re not coping.

A lot of it is about pride – we’re supposed to just get on with it and not complain. This is what you do to take care of family. You do that thing of saying “yes I’m fine”, until one day you realise that you’re not fine because you’re at the side of the road crying.

So who is there to help? I still think this is a big problem which is why I was recently involved in helping to develop a guide called Spotlight on a Carer’s Journey. The introduction of the Care Act ensures carers are recognised as being important too, but do any of us really know what that means?

‘I was lucky’

I was lucky, the policeman directed me to an organisation called Carers’ Resource that specifically supports carers. I went in crying my eyes out and came back out laughing.  I couldn’t believe that there was support for me on my doorstep and I didn’t know anything about it. Why hadn’t anybody told me?

To have somebody just listen to me, and not feel judged by whether I was coping or not, it was such a relief. In just one session we quickly sorted practical things that you just don’t realise are preying on your mind. It was the simple things that gave me the most comfort, like making a backup plan in case anything should happen to me or if I was sick – just knowing who I could contact, I can’t tell you what a pressure that is to release.

‘Someone listened’

Somebody listened to me and asked me about my needs, not my husband’s. And we got everything up and running so quickly – what to apply for, where and how to apply, all that admin stuff. Carers’ aren’t told this, or if they are it’s not in a way that they understand and that’s a big problem.

This kind of information should be in local shops and market places, it needs to be much easier for people to find out about. Most of us end up caring for somebody at some point, and when it happens very few of us are prepared.

At Carers’ Resource they understood how difficult it had been for me to have to give up my support work for social services and so it was such a relief when we worked out how I could work from home by offering respite care for adults with learning disabilities.

I also had a grant to join the local gym because I now know how important it is to make time for me. Not everybody lives near to an organisation like this, there’s so many people out there that don’t understand why it’s important for carers to look after their own health and wellbeing.

‘Too many are left to do this alone’

Some of my friends say “you’re a saint”.  I’m no saint – as a carer we’re all just doing what we need to do on a daily basis. Like so many other people I meet in support groups, I’m just getting on with it. But we all need help, we all have “one of those days”. Now I’ve got support, a place to go when I have “one of those days” and other carers know what that means.  I also feel more educated about what I’m entitled to and where to go for help.

There are still many people like me, caring for people in their families and just trying to do it alone with no idea of the support you can get. We should be making it much easier for them because they’re important too.

Freda contributed to Spotlight on a Carer’s Journey, a guide from the National Development Team for inclusion that was co-produced with carers and carers organisations to provide support for organisations helping carers or commissioning services.