I was asked by the organisers of Carers Week 2013 to write a blog post for their site based on the subject of being “Prepared to Care”. I’ve reproduced it here (for no other reason than to keep the blog ticking over).
11 other carers wrote their stories about caring for the same site. Please take the time to go and have a read. Every carer’s experiences are different and it was educational for me to read their accounts of being a carer.
Meanwhile, here’s my post on the financial aspects of being a carer.
Over the 8 years I’ve been caring for my wife, I reckon I’ve lost over £175,000 in income (give or take a promotion or three) and as a couple, the figure reaches well over £250,000. When my wife was diagnosed with MS in 2005, there was no independent financial adviser tempting us with a glossy brochure illustrating the potential losses that disability and caring can bring. No presentation slides and projections for the following 5 to 10 years. In fact, we didn’t even think about finances that much other than ensuring we could scrape enough together to cover our monthly outgoings.
If you can sense a little sarcasm in the above paragraph, you’re right. However, there is a kernel of seriousness in there as well. While there are a number of organisations who will help you with filling in forms for various benefits, none of them can adequately prepare you for not having anything like as much coming in as you might have had prior to taking on the caring role. Will you, the carer, be the ‘breadwinner’ where you might not have had this role before? Can you still ‘work’ while being a carer? The person you care for may have such extensive needs that ‘working’ is no longer possible. To suddenly go from not having to worry about bills to wondering if you’ll be able to get the shopping you need is a hell of a shock.
Why have I put quotation marks around the word “working”? Because, despite many speeches to the contrary from politicians of all flavours, caring isn’t viewed as real work. It’s just something you do that prevents you from doing real “work”, right? I can tell you from my experience that it’s bloody hard graft. Hard graft for little recompense. Carers are a conservative’s dream workforce. And, perhaps controversially, I’m not referring to care-workers. They’re different. While they may not be adequately recompensed for what they do, they’re entitled to minimum wage and health & safety protection. Carers have no employee rights, no health and safety enforcement, and all for £59.75 a week. If you provide care for a bare minimum 37 hours a week, this is £1.61 an hour. Obviously, that hourly rate reduces the more hours you care. I certainly do way more than 37 hours – and way more than the 48 hours specified in the European Working Time Directive. There’s no choice. Caring has to be done because the person you care for needs the help.
When you’re used to an income somewhere around average salary, a drop to Carer’s Allowance is a big shock. I was a Civil Servant. And it wasn’t just a job, it was a career. I’d been promoted a couple of times and was on the list for another. My wife was also ready for promotion. Then MS appeared out of nowhere. We’d spent the three years up to and including 2004 dealing with divorce, court cases, and helping with my Dad who had terminal cancer. 2005 was supposed to be the first year of our future. It turned out to be the first year of MS in our lives. And a pretty vicious, progressive form it is too. We were married in the January and by March the symptoms were really kicking in. Diagnosis came in May. Right from the off, my wife needed help to look after herself. We lived nowhere near family and couldn’t ask friends to do it. It was just us two. So I became her carer. Not a post I’d applied for. Not one she’d advertised. But that was the reality.
I had to stop “working” because I had to provide so much care for her. (The photo attached to this post is from 2006 – her MS has progressed considerably over the last 7 years.) Needless to say, my wife had to give up too. Overnight, our “earning” capacity dropped by over half. You learn pretty quickly to do without your disposable income. You learn, or at least I had to learn very quickly, that every penny has to be accounted for every month. That there’s no “fat” available. Your lifestyle has to change but, with disability and caring, your lifestyle is changed for you. Things like going out become a thing of the past, so you’re saving money there, right? You concentrate on keeping a roof over your head, putting food on the plate, and the home heated and lit. That’s it. The other stuff doesn’t exist any more.
Nothing and no-one can really prepare you for losing so much if disability should enter your life. Caring is the same. Your sense of worth is conditioned by society to be bound up in what your income is. You’re judged on it by the outside world, even if they’ve not met you – a cursory glance at today’s media will tell you that. And you certainly spend many a waking hour judging yourself on it. “Is this all I’m worth now?" Despite the occasional political speech or media article eulogising the work of carers whenever there’s an event like Carer’s Week, you can’t help but measure yourself against the bulk of the stuff you see in the media. Who’s got what? Who’s doing this and that? Where to go on holiday this summer? Etc, etc, etc. The Joneses are now a long way out of sight.
Think about your income. Think about what you might be doing with it over a weekend, over the summer. Then imagine over half of it gone. What would you do? This is the reality for a lot of carers. Would you be prepared to care?