Prepared to care? As if

20130617-010332.jpgThe theme of Carers’ Week 2013 – which ended yesterday – was ‘Prepared To Care?’, which aimed to highlight whether carers were able to adapt to their role, and if so, how?

In my case, nothing could be further from the truth. At no point in the lead-up to, and during, Isobel’s diagnosis did it ever cross my mind. For quite some time, I still saw myself as Isobel’s mother – placing me in the same bracket as the 75% who were unprepared for all aspects of their caring.

I had no idea what to think post-diagnosis. I didn’t have room in my head for any form of clear-sightedness anyway, given that at the time Isobel was having up to 60 petit mal seizures a day and was in and out of hospital nearly every week. Certainly, upon making his diagnosis, I wasn’t aware that Isobel’s paediatrician was already marking me down as one of the 6.5 million unpaid carers who regularly save the British economy £115 billion a year.

£115 billion. Imagine how much we carers could stand to gain from that. Reading Carers’ Week’s latest key findings, I was astonished at how many of them reflected my own situation as Isobel’s carer.

During the six months in which doctors battled to bring her seizures under control, both my then-husband and I were among the 45% who had to give up work due to our caring roles. Even when the seizures evaporated, I was – still am – one of the 42% who wound up with reduced working hours due to being a carer.

Let me place this in context. Ben goes to nursery three full days a week. Isobel joins him there one afternoon a week, and attends PACE two days a week. As I pay for Ben’s nursery sessions with a combination of Tax Credits and my own income, I can and do choose for him to attend all year round (48 weeks a year).

In contrast, Isobel’s dual nursery/PACE placement is funded by the council as part of her SEN statement in term-time only – 38 weeks a year. Consequently, instead of looking forward to the school holidays like most parents of non-disabled children do, I dread them, because that’s when my caring responsibilities shoot through the roof – and my income diminishes (reflecting the experiences of 60% of carers), even though I still have one child in nursery three days a week.

The only exception is the nanny, who comes on Fridays. Her paid role is all year round as contractually agreed between us, and naturally, she is willing and able to take both children for the day. Honestly, that woman is a godsend; she does some light housework, will dutifully practise any recommended exercises with Isobel, and absolutely lavishes care and attention on both her and her little brother.


But even she notices – without complaining, I hasten to add – how tiring it is looking after two preschool-age children with very different demands for one day.

‘And I do this only seven hours a week,’ she said to me the other month. ‘But you have to do this every day!’ Which sums up perfectly why I am also among the 92% of carers who experience additional stress – especially in the school holidays.

Those who have been following this blog regularly for the last six months will know that I am a single parent. While I’m still not able to expand on the circumstances leading up to the separation, this at least constitutes a breakdown in my relationship with a family member (42% of carers), and I would not be surprised if my relationship with Isobel had improved by 61% due to the extra time I put aside for her.

That I have difficulty maintaining friendships (61%) is a given in light of the circumstances I have just described. I frequently miss morning activities with local mums and toddlers from my ante-natal classes with Ben, and it’s a blue moon indeed when I manage to get away for the evening or weekend.

Most of the time – like many carers, I understand – I rely on Facebook or Twitter for social interaction. While excellent in terms of getting back in touch with old friends and starting mini-campaigns, there’s nothing quite like living, breathing human contact, especially when you live in rural isolation like I do.

I was never big on exercise, but even if I was, I am sure I would still be one of the 72% who are having to cut their exercise time due to their caring responsibilities. At least I get it from pushing the tandem buggy. I’m sure I must be fit, because others have observed how much they struggle to get it up the hill where I live. Sometimes I wonder if I’ll gain arms bigger than Madonna’s. (Not that it’s what I aspire to!)

Given my history of depression, I do think that it has been exacerbated to an extent by my caring role (61%). I still have the odd day – usually a weekend – when I don’t want to get out of bed or eat, because however lovely Issy and Ben are, it’s the same old solitary routine: get up, get dressed, feed them, prepare Issy’s meds, change both nappies… When you consider that Isobel has needed someone to physically get her out of bed every morning for nearly four years from birth, the monotony is stark indeed. She has not once initiated getting out of bed herself.

Of course, I’m much more than a dry statistic. It is just that the way my experiences become a mirror to much of the caring population highlights one glaring fact we have in common: that there is absolutely no way that most people can prepare for the stresses of unpaid caring. We all could do with an annual share of that £115 billion, to compensate for the very real human cost.