Today’s guest blog is from Rob G (@Simplicitly on Twitter) – fulltime carer for his wife who has Secondary Progressive MS
A lot of stories about family carers are of people who have been dropped unexpectedly into frightening and difficult circumstances. Becoming a carer can really can happen to anyone. In a situation like mine it’s only natural to feel a sense of relief that you don’t have to deal with some of the problems that other people do. This feeling doesn’t go away just because you have more problems than some other people do.
How is it different for me?
I chose to become a carer. When I met my wife, she’d been diagnosed with Relapsing-Remitting MS for a couple of years. (It has since progressed to Secondary Progressive MS). She sat me down with an A5 red binder containing lots of information about the possible courses of the disease. MS doesn’t have an established pathology that applies to everyone who has it. It just does its own thing, on an individual basis. Nevertheless, there was a lot of information about the different forms. Relapsing-Remitting MS (where you get worse and can get better) can change to Secondary Progressive’ MS (where you have periods where you get worse and others where you plateau). It also detailed how MS can also be ‘Primary Progressive’, where you get worse, and carry on getting worse as a general rule, without as much opportunity for much stability or improvement in your condition. I should point out that none of what I just said is set in stone, it really can be different for anyone who has it.
So, I was ostensibly given the chance to walk away from a life as a carer. If you can put aside your feelings for someone, and place some of your own needs ahead of theirs, there’s a choice for people as lucky as I was to be given one. I understand why anyone would make this choice. However, even now, when my carer role excludes me from being reliable enough to have time to have a ‘proper job’, I wouldn’t have it any other way.
That doesn’t mean I don’t need help.
As anyone who is a carer will know, the last person you look after is yourself. It’s not about being some kind of selfless superhero, it’s pretty tedious personal prioritising. The roles you end up doing are too important for you to balance your own needs against them. Academic hierarchies of need are thrown out of the window when you’ve got to clean stuff up and sort stuff out and care. It takes time to care, it takes energy to care, it takes time and energy to make up for the time and energy you’ve exerted caring. This is, however, often nothing compared to the energy the person you cares for has to exert, and the pain and privations they have to go through while you’re caring for them, so it’s easy, perhaps even natural to put yourself second.
It also doesn’t mean I won’t keep complaining. Carers are dealt a doubly bad hand. We don’t want the compassion that should be reserved for the people we’re caring for, we just want to not be taken for granted. However we’ve arrived at our roles as carers, or more accurately, our jobs as carers, we’ve all got the ability to walk away. The £119 billion pounds that we save the economy every year – the value of the entire welfare budget, doubled – isn’t our priority. But if you keep pushing further local government cuts and welfare reforms upon us, at some point we’ll break. And the cost of breaking us will be higher than any non-carer can recognise!
I chose to be a carer, I chose this life, but I’m no less bound to it than the people who have been thrust into it unsuspectingly.
Carers have to fight for every bit of the help they get. There are charities and a care minister and a duty for local services to help carers, but in the face of continuing political apathy on our behalf and indistinct ‘cuts’ to local services cutting closest to services for adult and child social care, it’s getting worse for carers, and the people they look after, not better.
That’s before we even consider the NHS, and what has happened to the Better Care Fund.
Does what Rob says chime with you? Sign up to the Carers Virtual Strike and show the world the true cost of care!