Thursday, June 26, 2014

A Carer?

Last week was Carer's Week, which - if you weren't already aware - follows closely behind volunteer's week.. This is rather ironic really as every day 6,000 people take on a caring responsibility and for most it's not a voluntary job...

I am a mummy; I have a career; I am a carer, too.
And you know what?
It is so very hard to be all three.

I was once asked why I considered myself a carer: surely looking after Eilidh is part of being her mummy?  Why differentiate between my role as her mummy and being her career?  And today I could ask myself the same question...

Surely a carer is someone outwith the family who comes in to care, to provide a role and do their job; all in Eilidh's best interests?  As a doctor that's what I once thought.  A package of care organised for my patients on discharge when they were no longer able to care for themselves, when their families could no longer burden the responsibility.  A carer: a person, an anonymous individual paid to provide a service.

What happened?  SMA happened.  And with SMA came the reality of my child; a little girl with a physical disability who depended on me, who needed all cares attended to.  At the point of diagnosis I was Eilidh's mummy, pure and simple.  By the age of three the lines were blurring: the toll of sleepless nights, Eilidh searching for her halcyon position, turning, turning, turning; the constant awareness of her dependence on me, her need to be moved, positioned, lifted.  By the start of school I realised, although definitely first and foremost (and with eternal gratitude) her mummy, I was also her carer.  A role I had not chosen, nor took to willingly.

I was at school, standing at the gate waiting for the bell to ring, when I realised just how dependent on others Eilidh is, how different she is from her peers.  The bell rang and there she was, with twenty-nine other five year olds, her pupil support assistant by her side, Snappie carrying her forward.  Eilidh stood apart from her peers.

Not long after, the tracking hoist arrived.  I wanted to pick her up, cuddle her close, smell her beauty and innocence but my body resisted, crying out in frustration as my muscles tightened and bones ached.  The hoist was necessary but I felt removed from her, distanced as she would hang cradled in her sling, removed from human touch.

Over time fewer and fewer people - friends and family - could or would lift Eilidh up, unsure of how to lift her, protecting themselves, and her too, from injury.  With that our fortnightly "date nights" and our weekends away, became more infrequent; time with my husband now seems to pale into insignificance.

Eilidh stands apart from her peers and is so very dependent on us, her parents.   I became a carer the moment I realised this.  It was never a hat (or a job) I wished to wear but, none the less, it is now a permanent fixture and it sits heavily upon my head - even now, four years on.  With the start of the summer holidays here, this hat will be worn more often which is rather daunting.  There are no holidays clubs suitable for nor able to include Eilidh and with the local authority granting us a mere six hours of self-directed support a month (yes! a month!!), D and I are using annual leave and two weeks of unpaid parental leave to provide the extra childcare.

So, to the people who question my role of carer: it's complicated but it's true; I am Eilidh's mummy but I'm also here carer too. 

When I wrote this post, imagining me in my carer hat, I remembered back to BritMums Live 2013 and my favourite talk of the weekend - Story of Mum and Pippa.  Thank you for inspiring me, Pippa and making me smile with your ever changing hats.


pippa @storyofmum said...

A beautiful post - and precious self-awareness - so much challenge and love here. Thank you for giving me an invaluable insight into your life as mother and carer, and I'm so touched that you remembered my talk xx

h0peful mummy said...

Thank you for popping by the read the post. I often think of you, Pippa - especially when reading Millie's Marvellous Hat x