We care, you should too

Endless toileting. Stumbling down the stairs in a half-dazed panic countless times in the midnight hours. Assisting with helping administer medication. Helping with feeding. Visiting the Hospital at all hours over any medical worry and engaging with a human occasionally incapable of speech.

That is usual when raising a baby up until they become an independent, healthy individual. But how about if your child doesn't achieve those milestones? What if all the scenarios I mentioned carry on and on and on, sitting in situ with your child from birth to toddler to teenager to pensioner? This is the world I inhabit, that millions inhabit, these are the lives we lead daily, why? Because either our children are born with disabilities or our parents become ill or worse and they need care, our care, from birth to infinity and beyond.

Today is carer's rights day 2019. A day created to celebrate and champion the unseen dedicated 7 million parent and young carers countrywide. Selfless people tending to disabled and elderly relatives. A day that should be used to highlight our families, the conditions we work under, the stresses, the poverty, the isolation, the love, and the lives. Unfortunately for us, it has fallen in the midst of a countries social, economic and political chaos. The brutal and bilious shouty election campaign and the endless hyperbole of Brexit. Today our once, yearly opportunity to have a voice, to draw back the veil is sidestepped by two national idioms. Two that will determine our future fate as carers and two that chose to ignore our situation in their thinking. How you may ask? Well, our increasingly perilous situation is not deemed worthy of a manifesto inclusion and Brexit, with its rampant xenophobia on immigration looks to starve the UK of any future care workers from the EU. On one hand, we are sidestepped and on the other, our family's external support is potentially choked off at the source.

Do I sound angry? Yes, I bloody well am. For every parent-carer that breaks down after no outside help and zero sleep, for every young-carer pushed to the edge of a mental breakdown before they reach the age of 10, I am entitled to be angry. In fact anger, today doesn't quite cut it. I am furious that people find themselves juggling care with employment or find themselves caring full time, both without external support. I am angry that the financial package put in place to help us and our loved ones live is so pathetically low and insulting at £66.15 PW that it works out at £0.39p an HOUR over a year. That is the cost of a value Asda lemon, quite a parallel really when you see that we save the economy £132 billion per year, an average of £19,336 each. A decent benefit would see so much pressure relived. I am seething that across the UK, right now, children as young as five are taking on the role of main family carer because our bloated political and social structure doesn't want to care and doesn't want to know. I am enraged that only half of young carers have a particular person in school who recognises that they are a carer and helps them and also that bullying through ignorance is rife.

Carers' rights day should be asking questions and seeking answers both socially and politically. How is it in a supposed rich economic landscape that children under 7 are bathing parents and sorting medications that should not even be in the hands of minors. How is it that parents are maxing credit cards, increasing overdrafts and queuing at food banks just to literally keep someone they love alive. How is it even possible that pensioners are taking care of each other because halfwits in the political process, cushioned by private health care and no class understanding have wilfully neglected in investing in social care. Indeed Jeremy Hunt admitted in June that: "some of the social care cuts did go a bit too far" and before that, in 2010 the coalition casually dropped a pledge to end carers' financial hardship. What poisonous, witless and black-hearted economics.

Sadly anger and column inches aren't going to help families like mine. My daughter relies on us for her care, round the clock, and because we adore the very atoms and stardust that form her being, we will continue to do that even as the house is repossessed and we are rationing the pot noodles. Today should be an embracing of every one of us, there should be a sea change of policy and admission of culpable failure from those who value us and our families less than political glory and the minimum wage. Today houses should be besieged by story hungry journalists actually taking an interest in something that isn't made up, politically duplicitous or z list celebrity motivated. Children should be standing in Westminster asking for help and demanding their childhood back. Parent-carers should be the first stop for any local MP and the ones we care for should be allowed to tell society they exist, they matter, the people who love them need more.

So, how can we be supported? how can we care without the additional worry of paying for food, heating, electricity, additional equipment, etc? well, for one thing, pay us the minimum wage or above. Secondly and just as radical, how about no more damn cuts to social care? How about giving care workers easier freedom of movement and pay them a decent wage, as they and ourselves are most definitely not "un-skilled" How about a minister for Carers? soon we will bloat to 8 million, we need a hub of hope and help. These are not socialist or communist ideas, but logical and reasoned humanist ideas, we wait, we want, we hope, we deserve.

Sadly, for all my furiously hammered out words, this blog, article, whatever you call it will be lost here today. Very little will read it or acknowledge it. The media will toss it aside. Carers' rights filed under "nothing to do with me" No doubt many of us will still sit in a shower fully clothed today and weep uncontrollably or scream into the wind at the callousness of Westminster suits. However, this written, soul-bearing piece is going to be relevant to another 6000 people today and again tomorrow and so forth, why? because that is the number who join the home care ranks daily. We are growing. If you join our diligent community of loving lost souls be prepared to fight for all your loved ones and you are worth, because you, they are worth it. Loving someone is easy, keeping them and you alive in the UK today isn't. Carers' rights day, people should damn well bloody care.