14 months ago I made the agonising decision to close down my childminding business and care for kiddo full time. His needs had clearly outgrown what I was able to provide him with, which is what I would consider a typical amount of attention any child would need or deserve in their early years. The decision was logical, but entwined with so much emotion, loss and disappointment. I had poured blood, sweat and tears into that business. Not to mention the financial commitment we had made as a family. But there was an air of acceptance in our house that day. Things were about to fundamentally change, and these changes were not to be subtle…
When I first started to tell people I was closing down the business to become kiddo’s full time carer, I was quite surprised by some of the responses I received. One resonated with me in particular, “Oh that’s nice though, you’ll be able to stay at home with kiddo and enjoy those early years before school”. Obviously this particular person had totally missed the point, though I admired their positivity! For this decision had not been made because I had the luxury to do so, it had been made because I had absolutely no choice to do so. Kiddo needed far more care than a typical child. And there was no escaping that.

When a person takes on a caring role (child or adult), they go through a journey that is of great cost to them. And I don’t just mean financial cost here. In order to demonstrate this let’s take a look at my personal journey. I know every carer will have a different story to tell, but I’m pretty sure there will be core similarities and themes flowing through my tale that you will all be able to relate to. So here goes…

1. Give up work/career/business. Now I know many of you reading this would probably be delighted to give up your paid work right now, but that would be with the hope of spending your days lazing on a beach somewhere. Not only are carers taking on more work hours for significantly less pay (to be discussed later), for many it is about letting go of those career goals, those ambitions you had for yourself and for contributing towards your family. For me it was a dream that I gave up, an aim that one day I would own my own business. A small dream and a small business maybe, but it was still mine. The personal cost of becoming a carer is astronimcal. You have to redefine yourself, and your purpose in life, which has now been decided for you by the way… which leads me on to my next point.

2. Take your core passions, beliefs and ambitions, and change them. For you are no longer in charge of your direction in life. Your direction is now determined by the conditions under which you care, the medical situation you are swallowed up by every day and ensuring the safety, health and wellness of the person you care for is at the forefront of every single thing you do. You must now become an expert over night in the relevant diagnosis, assessment pathways, financial applications and political stance surrounding the illness or disability you battle. In our case, autism. For knowledge is power. Even the professionals will tell you that. But in order to survive all of this you must make another epic change…

3. Apply and live off benefits. This is a tough one for so many reasons. Firstly, many people who become carers have come from a working background and have absolutely no idea how the benefits system works. I didn’t, I didn’t even know what Disability Living Allowance was, let alone how to apply. It’s a whole new world of policies, applications and down right confusion. The forms are endless (and I do mean endless) and the stress and pressure on you as a carer to complete these applications just right so that every key word the Department for Work and Pensions wants to see is in there, that you haven’t missed one minuscule detail that could cost you £50 a week, well… it sent my blood pressure to a whole new level I can tell you. Admin aside, there are other costs to living off the state. You are now officially in “that group” of benefits claimants, whom most people look upon with disgust because you’re not working. There’s no choice here people. For me, there was absolutely no choice. You are backed into a corner, and these benefits are your only way to survive. And why do you need them so badly? Because the cost of living is about to become astronomically high…

4. The cost of living with a disability is just insane. I’ve tried to think of a better word, but the idea of insanity just about covers it I think. Let me give you an example or two. I’m what is known as a parent carer. This does not mean I’m a stay at home mum (which I have absolutely no problem with by the way. It’s a job not to be sniffed at, and when I say job, I mean job). This means I spend my entire day tending to my child’s every medical need which can be life threatening on a daily basis. I converse mostly with professionals from hospitals and social care, and my discussions pretty much concentrate on subjects such as bowel movements, sleep, behaviour challenges and safety in the home. Just so you know, I won’t be discussing education in this blog, that’s a whole other story. Anyhow, I digress! I’m a parent carer and as such the person I care for is currently very young and very large for his age. Autism brings with it some major toileting challenges and currently the kiddo is not toilet trained. When he was the typical size of a child in nappies, his nappies were 14p each. Now he is 3-4 sizes larger than what the supermarkets deem profitable to sell and his nappies are approximately 50p each. Our monthly bill for nappies sky rocketed from £31.36 to £112 a month. That’s an increase of 255%. And I’m now on benefits which equate to £1.79 an hour. Hardly seems fair does it. Another example, kiddo needed a new car seat. Because of his size and considerably delayed development he needed a specialist car seat that cost £600. Most of his peers are able to use seats that cost £50 to £200. I have to say that cost had me in tears that day. I could go on but I think the point is made. The financial cost of providing equipment for someone with a disability who is dependent on you is farcical. Moving on.

5. The strain on your mental health as a carer is one of the greatest costs of all. Down time? Hardly any. Sleep? If you’re lucky. Support from family? Perhaps, again if you’re one of the lucky ones (which I’m relieved to say we are). Every commitment in your diary that isn’t centred around the person you care for is only ever pencilled in. Because at a moments notice that could be cancelled for yet another hospital appointment (of which there are so many you simply won’t be able to count), the need for sleep where you can get it, or perhaps the person you care for is unable to embrace the world that day. Because remember, wherever you go, they go and vice versa. Chances for you to recuperate are minimal and sparse, and this doesn’t bode well for maintaining a healthy mindfulness approach to life. 

The true cost of being a carer, to a child or adult, is hard hitting from multiple angles. It covers economical, personal and social areas, quite often suffocating and swallowing up the voice of that person. Unless you’re me of course, and impossible to shut up 😉

However, there is one last thing I must say that is more important than anything I have written so far. That despite all of what I have said, regardless of the everlasting effects of our role, we would do it time and again to protect the ones we love. That you will never come across a more fierce guardian, a more passionate campaigner or a more dedicated nurse, than a carer who has given up their plans and ambitions to make someone else’s life the best it can be. Don’t mess with us world, for we are one ferociously loyal and protective bunch of people, with a fire in our belly that will never be tamed.

Thanks for reading,

Danielle