My name is Melissa and I am a single parent of two, including one with a disability.

For nearly five years now, I have been making my own way as my children’s primary carer.

It hasn’t been easy, but I’m proud to have come as far as I have. Nobody can accuse me of complacency – we all know how hard parenting is already anyway, without guilt becoming an obstacle. I’m enjoying seeing the kind of people my children are turning into, and how they relate to each other, their cousins, their friends, their friends’ parents, their schools, their carers and the wider community. They don’t see their father, which is a shame – but the circumstances of the breakdown remain between me and him.

My oldest child, Isobel, has just had a hip salvage operation in hospital. At nearly eight years old, this is her first ever surgery. It’s major.

Her right femur had a 80% risk of migrating from its hip socket, which would have caused Isobel lifelong pain; that she was asymptomatic is a miracle. 

In addition, both thigh bones were ram-straight at the top instead of gently curved, due to restricted mobility brought on by cerebral palsy.

So fairly substantial bone restructuring was involved in the surgery, and that’s notwithstanding the installation of metal plates to correct development and keep the femurs in joint. Isobel may have these surgically removed at a later stage as she grows.

My name is Melissa and I am a single parent of two, including one with a disability.

The circumstances that I find myself in are unavoidable yet necessary, for the sake of my children’s wellbeing. Thanks to the sacrifices I have had to make on top of being a parent – setting aside extra time for Isobel, like I have done these last few weeks, and will do again for the rest of her convalescence, and again countless more times after that, for as long as she and I live – I am never again going to be able to gain useful employment.

All I have to trade on is my writing, and the fact that I had a portfolio career in the arts and media before I became a mother. We could dream of my becoming the next J.K. Rowling, but let’s be pragmatic for now.

I am a carer as well as a parent, and will always be besieged by bureaucracy and paperwork relating to my daughter’s disability. As the non-disabled sibling, there’s no way her baby brother generates anywhere near as much printed tree pulp. He may be five, but I’d say the forms I fill in for him are one-fiftieth of his sister’s.

However hard I work at boosting my energy levels with homemade multivitamin juices, beans and pulses (and these are certainly effective) I still crash out at night in spite of the voluntary and paid support I’ve built into our everyday routine. Often, my own tiredness has to wait until I’ve also addressed the needs of an inquisitive five-year-old lacking a second parent.

I am not merely complaining. I want to highlight the reality that reduces my capacity for work, freelance or otherwise, and how that is being aggravated by the present economic climate. I cannot be in two places simultaneously, never mind three. The same is true of my own mentality. 

Even writing this requires a particular surefootedness that can’t be achieved if I came straight off the bat of three hours in a full-time caring capacity, because of the demands that places on my thinking altogether. It’s a bit like attempting clear handwriting when your brain is an utter scramble, 24/7 manifold. You just can’t switch off.

I have been a parent-carer for eight years. I have only been able to write this after a three-year lapse in blogging because my daughter was in hospital for the first time since 2013, all her needs were being addressed, and my youngest was staying overnight at a friend’s house.

My name is Melissa and I am a single parent of two, including one with a disability.

It is for people like me and my children that the welfare state exists as an indispensable safety net, with the National Health Service front and centre as its most potent symbol for 69 years.  I have no idea what I’d do without them. Given the circumstances it would be impossible to imagine what I’d have to do to fundraise for something as major as a child’s hip salvage operation under an American-style healthcare system – never mind the equipment, social care, medication, rehabilitation, medical reviews and therapies she will need for the rest of her life.

Where would I find the time and energy – let alone the money and highly specialist medical expertise? Can anyone honestly tell me the NHS will prevail in our lifetimes? 

Because if so, I’m inclined to think they’ve been hoodwinked. The familiar blue-and-white logo may be all over the medical correspondence I get most days, but it no longer feels quite like the stamp of public-duty comfort it used to be.

My name is Melissa and I am a single parent of two, including one with a disability.

The last 24 hours prior to Isobel coming home from hospital were stressful. Her social worker had advertised well in advance for two-handed care, two hours a day every day for the full six-week recuperation period, but was shocked to find none was forthcoming – not just in our locality, but anywhere.

She wound up ringing everyone over 24 hours just before she went on holiday, to little avail. I finally put her in touch with a specialist school, who then provided the necessary carers at the reduced capacity of one for two hours a day on certain days of the week.

The sole agency that could offer care at all, filled a total of four hours over two days in one week; being deeply short-staffed, they haven’t been able to organise much more.

The leftover care hours I have had to make up for with voluntary support from family and friends where possible, with the remainder done by myself – which, unfortunately, has led to back pain.

Is this an acceptable situation for an ordinary single-parent household entrusted with the upbringing of a disabled child? If love conquers all, why do I feel my love and care is not enough to ensure the quality of life my beloved daughter deserves? 

I am just one person tackling a metaphorical safety net that has collected some ominously large holes since 2010. Surely I am not asking for much? It’s not like the NHS has never topped global polls – including one this very month, is it? How does that make it deserving of persistent underfunding

This is not about being left or right wing. This is not about blaming the people involved in my children’s care – indeed I can’t overstate enough how dedicated they are to their jobs. This is about making sure people are well looked after.

Three times alone this week, the subject of government cuts has entered the conversation with social services and carers, with hardly any prompting from me. Now these are not political activists. They are professionals so committed to serving the country that when they find they can’t do even that, they start to despair. Situations like that hit home the notion that you cannot put a price on public duty. These guys deserve so much better. We all deserve better.

My name is Melissa and I am a single parent of two, including one with a disability.

I am angry, too, at the accumulative cuts that have led to my and my children’s current predicament. I don’t believe the austerity lie that has persisted for years, especially since the Conservatives swept into power in 2010 – first in coalition with the LibDems, then alone. Shrinking public services to pre-1930s levels, like they said they would, has no purpose other than to increase the flow of money upwards. You don’t have to take my word for it – the figures speak for themselves.

However I have a responsibility to my children to find a way to channel my anger. I want them to grow up with a sense of hope and purpose, so they can contribute positively to the change in the world I’m sure they’d want to see. 

It’s hard when those holes in the welfare state keep buckling as the years go on without much evidence of governmental concern. Sometimes I have to grit my teeth and dig hard within myself for my own sense of purpose, otherwise I’ll buckle too. I am often my children’s only safety net.

My name is Melissa and I am a single parent of two, including one with a disability. This is the situation I, and many, many other single parents of disabled children like myself, face in Britain today.

And it doesn’t. Have. To. Be like this. 

Photos of Isobel in hospital. All copyright Melissa Mostyn 2017 apart from top picture, which is credited to Pauline Latchem

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.

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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.