By Rochelle Bugg / @RochelleBugg
Iâ€™m not writing this looking for attention or sympathy (given what my sisters and I are facing neither of those come anywhere close to being useful.Â Unless they can make mum better or bring our dad back to life weâ€™re not that bothered).
Iâ€™m not writing this because Iâ€™m a whiny bitch (donâ€™t get me wrong I often am, just not this time).
Iâ€™m not writing this because I feel sorry for myself (Iâ€™ve seen Jeremy Kyle â€“ I understand however hard my life gets at least I have all my own teeth and have never felt the need to ask my boyfriend to take a lie detector test).
No, Iâ€™m writing this because Iâ€™m confused about the situation that I find myself in and what appears to be a comprehensive failure of the system to recognise the vital role that carers play in our society.
Iâ€™m not moaning (although Iâ€™m aware thatâ€™s probably how itâ€™s going to come across).Â I understand that my sister and I chose to give up our respective career and education in order to move home and care for mum and we 100% stand by that decision.Â I understand that I have a choice:Â I could just walk away, make it social serviceâ€™s problem and get some sleep, regain my sanity, work my way out of my overdraft.Â I am not claiming to be a victim.Â I am simply seeking an explanation as to why things are the way that they are; in particular:
Iâ€™m not complaining that the world isnâ€™t fair.Â Iâ€™m (slowly and just about) at peace with the fact that someone, somewhere, for some reason has decided that I would lose my dad to cancer when I was 14 and now 12 years on will have to go through the same heartbreaking journey with my mum.Â However angry I get, however many tears I cry, however many nights I spend awake there will be no answers; no logic; no rationale to explain why I canâ€™t have my parents at my wedding, norÂ why my mum and dad wonâ€™t see their grandchildren.Â Thereâ€™s no point resisting the inevitable; weâ€™ve just gotta play the hand weâ€™ve been dealt.Â But then there are the elements of this journey that can be changed and it is those with which I am concerned.
Nobody was more pleased than us 3 girls when Mummy Bugg was discharged from hospital last week.Â After being told mum could come back home where she belongs, we were more excitable than kids with ADHD eating blue smarties washed down with Red Bull on Christmas Eve.Â Although I didnâ€™t dare let the thought pass my lips at the time, there were definitely moments in the early hours of Sunday morning where I thought the tumour had won and that this was it â€“ time to say our goodbyes.Â To find out it was *just* an infection and that Mummy Bugg lives to fight another (hopefully a lot of) day(s) is quite frankly the most uplifting, joyous, relieving, precious news I have ever had the good fortune to hear.
Weâ€™ve been caring for mum at home for just over a year now so you would think weâ€™ve got things down to a fine art BUT (obviously there was going to be a but) â€¦ things just stepped up to a whole new level of difficult.
But we wouldnâ€™t have it any other way (well I would, Iâ€™d somehow zap the tumour out of her brain and make her well again) but what I mean is that itâ€™s a privilege to be able to go some way to repaying the woman who has dedicated her life to making sure we girls are ok.Â There is almost a sense of relief and gratitude that I have the opportunity to prove to her just how much I love her and how much I appreciate everything she has done for me by looking after her when she needs me to.Â Iâ€™m doing this because I my mum needs help and we as her daughters WANT to be the ones to give her that help just like she did for my dad when he was dying.Â But the way the system is set up itâ€™s as if everything is going against us.Â Financially speaking we are shooting ourselves in the foot by looking after our mum ourselves.
I admit Iâ€™m no Carole Vordamon but nor am I stupid â€“ I can work out how much a new pair of shoes will be in the 20% off sale (although Iâ€™ll probably use the calculator on my phone to double check).Â But thereâ€™s something about the Mathematics of the benefits and resources available to carers in this country that I donâ€™t really understand.Â Letâ€™s try to do some simple sums â€¦
Iâ€™m raising these issues and asking these questions from a genuine place.Â I admit I donâ€™t understand but Iâ€™m saying I would like to understand.Â Could somebody please tell me why things are the way they are and why we shouldnâ€™t change them?Â I know thereâ€™s a global recession and that we arenâ€™t exactly flash with the cash as a nation right now.Â I know itâ€™s all about budget cuts and redundancies.Â But then I hear about the millions of pounds being spent on the Olympic opening ceremony and a massive colour changing fountain in Bradford city centre.Â I understand the â€œspeculate to accumulateâ€ school of thought; the government needs to invest in events/attractions in order to encourage further investment.Â I understand the theories (no, really, I did my undergraduate dissertation on the economic and social impact of events on urban regeneration).Â But I donâ€™t understand why/how the money can be found to fund these things when it apparently isnâ€™t there to cover what I would consider to be the basics.
Maybe Iâ€™m being over simplistic here but surely what attracts investment, what boosts morale, what creates jobs and improves living standards is for a country to be built on good quality sustainable foundations?Â Without meaning to sound flippant, instead of spending Â£80 million on fireworks, flag waving and some coordinated dance routines at the Olympic opening ceremony wouldnâ€™t that money be better invested in public transport, making new cancer treatment drugs available or maybe providing carers with an income reflective of the work they do?
I am ALL FOR fun.Â I am ALL FOR lifting the spirits of this country.Â Jubilees, New Years fireworks displays, Olympics, the whole shebang: BRING IT ON!Â But how about we learn to walk before we start running?Â How about making sure all the basics (health, education, welfare, transport) are up to scratch before we start comparing the size of our velodrome! If all of these things are aimed at showcasing Great Britain then how about we focus on building a country that works and that is fair. Â If when people came here they saw our efficient public transport system, clean streets and we as representatives of this country were proud to talk about our great NHS and schools then I think the country would sell itself (with or without a laser show and performance from JLS).
Clearly Iâ€™m going to be biased on this issue.Â But Iâ€™d love for someone to sit down and explain and more importantly justify things to me.Â Maybe MPs donâ€™t realise the intricacies of the situation or maybe itâ€™s just never crossed their mind.Â Iâ€™m willing to give them the benefit of the doubt.Â Iâ€™ve seen those undercover boss programmes on Channel 4; I know that sometimes those at the top donâ€™t realise what is going on â€œon the shop floorâ€.Â So if you are one of those people at the top â€“ is there any chance of a bit of feedback for us carers?
You work at the House of Commons â€“ any chance of a sabbatical at the House of Common Sense?
I hope this doesnâ€™t sound like me feeling hard done by.Â Itâ€™s more a ramble fuelled by my sense of disbelief at the way the world works.Â I know the likelihood of anything changing due to this one little blog post is slimmer than a model at Milan fashion week but I just donâ€™t quite seem to be able to get my head around things.Â Maybe someone somewhere will read this and be able to offer me some answers that make sense.
Original posted on A Bugg’s Life
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