News & Events

Who cares for the carers?

Last Reviewed 13/06/2018

By SWAN UK Parent Rep for North Yorkshire and blogger Lisa Beaton - definitelynotthewaltons.com

There are many days where I feel like waving the white flag of surrender. I give up. Stick a fork in me, I’m done. Substitute your own personal favourite motto for when the sh*t just keeps on coming and you really don’t want to face it anymore.

As a rule, I am not a woe is me kind of a gal but there are limits and even for the Queen of ‘the glass is half empty, therefore there’s always more room for wine’ claimant, sometimes I just don’t want to play anymore.

So why today? It’s been a busy week – nothing new there. Multiple appointments – again lather, rinse, repeat. Certain ‘dark forces’ (bear with me, having to be slightly obtuse so it’s not too outing; a story for another day!) have done their level best to floor us as family and put up barriers; as my Dad would say: ‘same sh*t different day.’ Nothing especially jumps out as being out of our ‘norm’.

Actually, the straw that broke the camel’s back today is really rather ridiculous –  especially since I’m a grown (loosely termed since I barely scrape 5ft 3″) woman.

I don’t know about you but for me, it’s often the little things that tip me over the edge and today was no exception: there were NO apricot danishes left in a certain food establishment that prides itself on offering not just any old Danish ... and boy did I have my heart set on that danish.*

You could in fact say I had built that particular danish up to be the highlight of my week (I know, I know, I need to get out more) and I was relishing scarfing it down with my mid-morning latte whilst staring daggers at my ever-increasing piles of paperwork that needs to be (set light to) dealt with and some of it rather urgently (anyone thinking I might be procrastinating by writing a blog post instead of dealing with said paperwork, that’s an affirmative!) particularly if I intend to throw my own kind of shade back at the dark forces. They might be putting up barriers but I’m packing TNT, a demolition ball and an AK47 to pulverize them. Ok perhaps I should step away from the caffeine ... my over active imagination, keyboard-warrior-esque approach and twitchy eye suggest that caffeine, my drug of choice, has been consumed in too vast a quantity.

Whether it was the *slightly* (murderous) deranged look in my eyes or the muttering sotto voice of curses questioning the parentage of all food halls connected with this particular establishment that caught the attention of the lovely man on the bakery counter, I can’t be sure but clearly sensing something was amiss from the plethora of delicacies in front of me, he tentatively asked if everything was all right.

Resisting the urge to scream out in the style of Ross from Friends a la 'My Sandwich' sketch (you young things aren’t likely to be familiar with that gem so let me share it here) and without resorting to tears either (the struggle was real, people) I managed to convey my deep disappointment that there were no danishes of the apricot variety to be seen.

And then, as if by divine intervention (ok, I’m waxing faaaaaaarr too literally, all that caffeine has really done for me today) the dear, dear bakery man, (alas I did not find out your name in the ensuing rush of emotions that came over me!) uttered those most blessed of words: 'not to worry, I’m just about to put some out!' Yes! Fist bump, air horns and angels singing the hallelujah chorus; the gods and goddesses and the high priestess of bakeries had smiled righteously upon me.

I must confess it felt like there was something in my eye. I’m thinking that as my salivary glands went into overdrive, some sort of neurological spill over occurred to cause watering?

But the thing is, I’m a firm believer in taking your pleasures where you find them (erm just to caveat, legal ones, I’m definitely not advocating lawlessness or reckless criminality!) because being a parent is at times bloody hard work.

Being a parent carer is even bloody harder, thankless work and as far as I can find, there’s no resignation clause and as for the pay? Well if you are ‘lucky’ enough to qualify (there are certain criteria and the person you are caring for has to have significant needs taking up significant amounts of time) for carer’s allowance, do the maths –  you don’t even get minimum wage for the hours you put in. Oh and no matter how many people you provide care for, you only get a single carer’s allowance.

When you multiply caring for three children and an 18-year-old who all have varying medical/social-emotional needs and complexities, there really aren’t enough hours in the day. I go to bed every night with a to do list that grows ever longer. For every two things I manage to tick off during the course of the day, I seem to have added at least another five.

It plays on my mind that I have dropped the ball somewhere; have I requested everyone’s medications from the GP and arranged for them to be sent to the pharmacy? Do we have enough feed/containers/giving sets/dressings/lotions and potions in hand to get to the end of the month? Have I transposed all of the appointments that crop up into my phone calendar so I can plan everything round them in the weeks ahead? And woe betide if any of those appointments were only given to me over the phone and I don’t have an actual letter to cross reference and double-check with –  will I get the right child to the right hospital/clinic/specialist on the right day and time?!

I’m not ashamed to say I take a concoction of various medications every day to help me manage one way or another; be that for my severe depression, anxiety and inability to sleep or for the acid reflux that plagues me and the dodgy back/neck/shoulders and most recently, excruciatingly painful sciatica (so many carers suffer with joint/muscle pain and problems as result of the physical demands of caring for a loved one with mobility difficulties) I’m acutely aware that these are a crutch for want of a better word. In an ideal world, it would be far better to tackle the sources of the problems permanently.

Even better, in some far off utopia, it would be to put provisions in place to be proactive instead of reactive. To prevent the aches and pains and feelings of isolation, despair and all the affiliated emotions and physicality’s that go along with being a carer.

I learned to my cost (and that of my families, not to mention the NHS etc) that if we carers don’t put protective measures in to fortify ourselves it all comes crashing down.

I am not unique. As a member of support groups such as SWAN UK I read far too many comments from parent-carers who face battles similar or even harder than my own.

On other forums I’m a part of in relation to education, health and social care, there is a generalised resignation to the fact that accessing support, working with organisations or professionals instead of the them and us facade is a constantly uphill battle; at best a ‘sorry there’s no money in the system’ approach to outright horrific accounts of utterly despicable, underhand tactics designed to deprive the most vulnerable members of society from the most basic, fundamental human rights and discrediting, even slandering or making false allegations against those who have to pick up the mantle and strive on their loved ones behalf. Probably best I don’t get started. I can feel the vitriol rising and that won’t help the acid reflux!

Next week from 11 June to 18 June inclusive is Carers Week in the UK. It is estimated that in the UK there are 6.5 million carers and that figure is only certain to rise as we face an ageing population who are living longer, an NHS that is under resourced, over stretched and a welfare system that has been not so much stripped back as hacked to death and lord only knows what, if anything will be around in future times to help and support those most in need.

But for now anyway, I have taken care of myself by refuelling with a double shot, fully caffeinated (you don’t say?!) latte and a belly full of apricot danish so I’m (bouncing off the walls) all fired up to tackle the paperwork and smite those dark forces with a mother’s wrath.

*If anyone suddenly feels the need to shower me in delicious pastries of the apricot kind, you know, I’ll happily take one for the team. Or tell me your own personal sanity savers and maybe I’ll see what else I can try!

AS PUBLISHED AT: DEFINITELYNOTTHEWALTONS.COM

Lisa Beaton is the SWAN UK Parent Rep for North Yorkshire. Email her at: northyorkshire@undiagnosed.org.uk

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