Latest blog The cost of caring is ready to be read online here https://www.fireflyfriends.com/uk/blog/the-cost-of-caring/
There appears to be a bit of a misconception amongst our local community (and indeed further afield.)
You see, recently I saw uproar on social media about the recent cost of living grant issued to many homes across the UK. The money was intended to help those with financial difficulties cope with the sudden rise in costs of UK living.
The media did not help with its phrasing of headlines clearly designed to cause anger and provoke a reaction.
People took to the keyboard slating all recipients as “lazy”, “spongers” “scroungers” and well, other things that wouldn’t be very nice for me to type here. Much of it was directed towards people in a similar position to us.
A position I never expected to find ourselves in.
I watched as people defended why they needed that money. I watch people enraged because they work long hours everyday and “get nothing”.
I saw some really, really unpleasant things being said.
There is a definite attitude that people with disabilities are just given “free money” or “free housing” or “free stuff”.
I recall a post a long while ago where someone outright suggested that people with autism are given free toys and everything they need.
So I suppose my question is - where can I sign up for this free lifelong money please? It sounds wonderful.
Jokes aside, financially things are tougher than ever for so many of us.
We recently had problems submitting a new gas meter reading and our “smart” meter had stopped working. We got it replaced to be told we owe £79 000! Imagine our surprise! Thankfully after a few weeks of back and forth emails and calls we were informed we actually only owe £797. (Only! She says, as if she has more than £2.70 in her bank account right now.)
You see families like ours have much higher operating costs! A height adjustable hospital bed, a feeding pump, suction machine, ceiling mounted hoists, constant kettle boiling for sterile water for tube feeds, the extra washing, the extra showers, the stoma site care and management.
I could go on and on. Everything needs charging, or some sort of regular maintenance that requires some form of energy.
Hospital stays. This requires so much more money than you would expect!
Days out. Fuelling a wheelchair van that has to transport a big heavy wheelchair and medical equipment everywhere.
I think though, unless you live our lives, you can never truly understand the picture I am trying to paint here.
Families are scared. How will they heat their house this winter? There are people choosing between food and heating.
Of everyone I know in a similar situation, I think generally they would all tell you the same thing.
They would tell you that working full time is a privilege. They would tell you how much they miss work. The productivity, the distraction, the social aspect, the money, and so many other things.
They’d tell you that they miss being able to leave the house with purse, phone and keys.
That they miss every phonecall causing that sick feeling in their stomach. “Oh gosh, not another ambulance is it? Is she okay?”
They miss being able book time away at places without researching for months about adaptations, grants, and whether or not they can afford it let alone manage without the care and respite they qualify for.
One of the biggest lessons I have learned in the last 8 years was not to judge.
I remember being a full time employee in an office.
I cringe telling this story… but I remember one day having a bit of a rant and outburst about the amount of charity fundraising we constantly did. It was always sponsored run here, bake sale there, non uniform day this, mountain hike that.
To my defense, at the time I was pregnant and saving every penny to pay towards a deposit on our first house. I had done 60 hour weeks and the exhaustion was getting the better of me.
So what I am saying is - I get it.
I understand fully why people are angry.
I realise now though that their anger is very much misplaced.
That £326 doesn’t even go half way to paying the energy bill that just shot up. I can’t just go and do some overtime. I can’t go and get another job, much as I would love to.
I tried working a few hours a week a few years ago. It was a disaster.
I would regularly come in absolutely exhausted with carer burnout from lack of sleep and constant medical intervention etc. Or I would be unreliable due to my daughter’s constant chest infections and seizures.
It caused so much stress.
Pay day would come. I would be excited to be earning my own money again to find that my earnings meant less universal credit payment.
I realised that I was basically working for free whilst everyone else around me got paid… and yet none of them were providing 24/7 care to a very medically complex dependant.
In addition to this, since the pandemic, charities have been impacted massively financially.
Lack of funding can mean that eligibility criteria becomes much harder for people to meet and thus more people are unable to access grants that previously they had qualified for.
At night I worry constantly. About society's judgment of us. About what I will leave when I am gone. About money we will never have.
I know in my heart that carers contribute a tremendous amount to our community. We save our government millions every year.
We don’t get sick days, we don’t get annual leave. We don’t get an appraisal and often suffer with isolation, lack of self worth, and also worse health. We don’t get a nice pension plan. We do what we do through necessity and also love.
We don't live in free big, fancy houses.
Many of us have had to sell our unadaptable homes that we had worked so hard for.
Many of us have had to campaign relentlessly to get the adaptations to our homes that we need to safely care for children. No one is just "given" anything.
Many live in unsuitable, cramped housing, unable even to get a wheelchair through the door.
Services are constantly under threat for us.
We worry constantly about respite funding, transport and education funding, NHS funding and so much more.
It's mentally exhausting worrying the amount we do. We feel constantly like we need to defend anything we get, no matter how little it is.
So if you're reading this but not in our position, I really would implore you to have a little more and compassion and actually to become an ally of ours. We are not the enemy.
Do not believe the headlines when they're out to get clicks and comments. Think about what we go through each day and celebrate actually how beautiful and precious life truly is.
The irony of all of this is that actually now I would be a better employee than ever. My admin skills are second to none, I am more patient than ever, I am more direct and efficient, I am skilled in many areas.
I am so much to my daughter. I can do medical procedures and interventions I didn’t know existed, and never thought I would master.
Be kind to yourself. You are doing absolutely brilliantly. What the outer world thinks is of no consequence. You know your own truth and importance.
I know that there will people who disagree entirely with everything I have written here. But know that I do see both sides.
And know that until you walk a mile in our shoes that you can never truly comprehend how our lives look.
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