Rochelle Bugg and her mother, courtesy of her Flickr photostream

By Rochelle Bugg / @RochelleBugg

I’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.  Unless they can make mum better or bring our dad back to life we’re not that bothered).

I’m not writing this because I’m a whiny bitch (don’t get me wrong I often am, just not this time).

I’m not writing this because I feel sorry for myself (I’ve seen Jeremy Kyle – 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, I’m writing this because I’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.

I’m not moaning (although I’m aware that’s probably how it’s going to come across).  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.  I understand that I have a choice:  I could just walk away, make it social service’s problem and get some sleep, regain my sanity, work my way out of my overdraft.  I am not claiming to be a victim.  I am simply seeking an explanation as to why things are the way that they are; in particular:

• Why are carers so unrecognised and undervalued?
• Why can only 1 person claim carers’ allowance when looking after a person that requires 2 people to help them?
• Why is carers’ allowance so little, and in particular less than JSA?
• Why doesn’t the level of payment and support for carers better reflect the massive amounts of money the country saves because of the work we do?
• Why can we as a country find the money to finance “luxuries” when we apparently do’t have the money to keep the “basics” running?

I’m not complaining that the world isn’t fair.  I’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.  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 can’t have my parents at my wedding, nor  why my mum and dad won’t see their grandchildren.  There’s no point resisting the inevitable; we’ve just gotta play the hand we’ve been dealt.  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.  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.  Although I didn’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 – time to say our goodbyes.  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.

We’ve been caring for mum at home for just over a year now so you would think we’ve got things down to a fine art BUT (obviously there was going to be a but) … things just stepped up to a whole new level of difficult.

• We’ve been doing the cooking for mum for ages because she couldn’t, then we started having to cut her food up for her, then we had to push it to the right side of the plate so she could see it with her poor vision, then we had to start putting it on the fork for her, now we have to feed her and hold a straw to her lips to drink.  On occasion she’s been so weak that she couldn’t even sip on a straw so we had to do that trick (you know where you put your fingers over the end of the straw so the vacuum keeps all the drink in there until you take your finger off).  All the times mum and dad told me off for doing that in restaurants – who knew it would come in so handy?!

• Yes mum hasn’t been able to walk very far since the diagnosis a year ago, but she could manage a few steps to get about with a zimmerframe, we just had to be nearby in case she had a bit of a wobble.  Then she kinda lost her balance so couldn’t really use her frame anymore.  Instead she would sit in her wheelchair and kinda “scoot” herself around using her feet.  Then that stopped working and we just pushed her (in the wheelchair obviously; not literally!) from one place to the next and helped her transfer to/from the chair.  But now she can’t really stand unaided to transfer (one of us has to “hug” her under her arms to support her while the other one moves her bad leg).

• Then there’s making sure we keep Mummy Bugg looking pretty:  The washing, dressing, shaving of legs, brushing of teeth, going to the loo etc.  I’ll spare you the details but let’s just say mum isn’t always able to move quick enough to get to the toilet.  Even though we now have a commode in her bedroom with her reduced mobility and the fact one of us needs to be bending down on the floor to move her leg … Well you get the idea; baby wipes and Febreeze are our new best friends!  Guess she’s getting us back for all those nappy changes she had to do when we were babies!  Likewise times don’t really seem to mean much to her anymore and there are frequent middle of the night calls for help.  There are pills of every shape and size to be taken at specific times in specific combinations (today she had to take a total of 22 at 4 different times).  She can’t be left to take them by herself as sometimes she will choke or drop them or not see the other pills. Sometimes she just flat out refuses to take any more.

• Even when mum is sleeping we are constantly “on call” – it may seem silly but it’s the little things you need to think about.  The fact we can’t listen to music through headphones in case she calls.  We have to cut phone conversations with friends short because she needs help with something.  We sleep with our bedroom doors open and have a baby monitor plugged in – and thank goodness we did last Saturday otherwise who knows what state she would have been in if we hadn’t found her until the morning?!

But we wouldn’t have it any other way (well I would, I’d somehow zap the tumour out of her brain and make her well again) but what I mean is that it’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.  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.  I’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.  But the way the system is set up it’s as if everything is going against us.  Financially speaking we are shooting ourselves in the foot by looking after our mum ourselves.

I admit I’m no Carole Vordamon but nor am I stupid – I can work out how much a new pair of shoes will be in the 20% off sale (although I’ll probably use the calculator on my phone to double check).  But there’s something about the Mathematics of the benefits and resources available to carers in this country that I don’t really understand.  Let’s try to do some simple sums …

• Carers’ Allowance = £55.55/week
• Only one person can claim carer’s allowance per person being cared for (despite the fact that in any “professional” setting e.g. carers provided by social services, nurses in hospital etc two members of staff are allocated for Health & Safety reasons and as I explained above a lot of times you physically NEED two people)
• If the person being cared for goes into hospital you do not receive carers’ allowance for this time (even if, as in our case, you spend all day at the hospital because the staff are so busy they leave your mum to eat food which hasn’t been chopped up; do not regularly check to see if she needs the toilet so is left sitting in her own urine; leave her to take her medication unsupervised so she then drops/loses pills).  Similarly they don’t care that you bring food from home anyway because the crap they serve up in hospital isn’t going to do a healthy person any good, let alone an ill person.  Nor do they care about the cost of parking at the hospital (£8.00 for 6 hours at Ipswich).
• Hannah and I worked out we care for mum about 15 hours per day, 7 days per week which totals 105 hrs/week.  But, for the sake of fairness say we are having an ‘easy’ week; our little sister doesn’t have college so she looks after mum for a bit; a friend pops around so mum has company whilst one of us pops to the Supermarket and mum has a few nights where she doesn’t wake up and need the loo.  So, we’ll round that down to say 90 hours/week.
• Remember that £55.55 carers’ allowance is to be shared between Hannah and I. So I make that (and I’m gonna round up where possible to be fair) £27.78 per week each.  This equates to approx £0.31 per hour each.  I just Googled it and apparently Job Seekers’ Allowance is £67.50 per week – so does that mean I would get more money looking for a job than actually doing one?  This means I would have to care for my mum for just under 2 days in order to earn enough money to pay for my prescription for anti-depressants (which I very reluctantly started taking a few months ago because sometimes I feel as though I need help to keep my head above water).

I’m raising these issues and asking these questions from a genuine place.  I admit I don’t understand but I’m saying I would like to understand.  Could somebody please tell me why things are the way they are and why we shouldn’t change them?  I know there’s a global recession and that we aren’t exactly flash with the cash as a nation right now.  I know it’s all about budget cuts and redundancies.  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.  I understand the “speculate to accumulate” school of thought; the government needs to invest in events/attractions in order to encourage further investment.  I understand the theories (no, really, I did my undergraduate dissertation on the economic and social impact of events on urban regeneration).  But I don’t understand why/how the money can be found to fund these things when it apparently isn’t there to cover what I would consider to be the basics.

Maybe I’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?  Without meaning to sound flippant, instead of spending £80 million on fireworks, flag waving and some coordinated dance routines at the Olympic opening ceremony wouldn’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.  I am ALL FOR lifting the spirits of this country.  Jubilees, New Years fireworks displays, Olympics, the whole shebang: BRING IT ON!  But how about we learn to walk before we start running?  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.  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 I’m going to be biased on this issue.  But I’d love for someone to sit down and explain and more importantly justify things to me.  Maybe MPs don’t realise the intricacies of the situation or maybe it’s just never crossed their mind.  I’m willing to give them the benefit of the doubt.  I’ve seen those undercover boss programmes on Channel 4; I know that sometimes those at the top don’t realise what is going on “on the shop floor”.  So if you are one of those people at the top – is there any chance of a bit of feedback for us carers?

You work at the House of Commons – any chance of a sabbatical at the House of Common Sense?

I hope this doesn’t sound like me feeling hard done by.  It’s more a ramble fuelled by my sense of disbelief at the way the world works.  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 don’t quite seem to be able to get my head around things.  Maybe someone somewhere will read this and be able to offer me some answers that make sense.

Original posted on A Bugg’s Life