Caring about carers - guest post by Anne Booth

By Virginia Moffatt
June 9, 2015

The 7th May 2015 turned out to be rather an important date for me. It was the date of the General Election, and also the official publication date for my next novel for 9-12 year olds, ‘Dog Ears’.

I had not a few hopes for that day, and one links my life in these last five or six years, The Children’s Society, the General Election and ‘Dog Ears’.

I was a carer for my elderly mother for the last five years of her life until her death nearly a year ago. I think I can say that those years as a carer were the hardest of my adult life. I never want to experience years like that again. I still feel really battered by them. It’s not that I don’t think it’s good to care, or that I don’t think that my mum deserved care, or that I didn’t willingly take on what I felt to be a loving duty, but I found it terribly hard, and felt very ashamed for feeling like that. I didn’t give up – I cared for my mum right up until she died – and I’m glad she didn’t have to go into a Home, as she was so scared of that idea. She was my mum and I’m glad I was able to help her stay in her home with my dad nearly right up until the end, and she had the beautiful and peaceful death she deserved in a very kind hospital ward after only being there for a couple of weeks. I live opposite and try to support my dad still, and I know this is a good thing, but this doesn’t make me feel that my time as a carer was any easier.

No one had prepared me for the stress and the loneliness, the worry (including financial) and the isolation – in that I found it (and still find it) so hard to put into words how I was feeling without seeming disloyal to my parents. I self-censored, I found I couldn’t chat easily to people any more, my lack of communication hurting and driving some friends away, driving my strong feelings inside and having horrible effects on my health – for the first time in my life I had palpitations, difficulty sleeping, acid reflux, and put on weight from comfort eating. My self- confidence plummeted, and if anyone had asked me at any time what I thought of myself, I would have said that I always felt guilty, that I wasn’t good enough, that I was trapped, that I was a bad daughter because I couldn’t make my mum feel better and that she regularly (in her dementia and depression) was angry and said nasty things to me, and that I was a horrible selfish person because I felt angry and despairing at my life being used up, instead of feeling holy and heroic.

It didn’t help hearing other carers say or write about how fulfilled and humbled they felt about being a carer, or politicians praise carers. My experience was different, and I felt so ashamed, and dishonest, and trapped in something I had not chosen. I had all the work and none of the satisfaction – I wanted my life back, and I felt ashamed of that want.

I really admire nurses, and when I was a teenager I wanted to be the sort of person who would be one. I even sent off for a prospectus for a nursing school. Luckily, somewhere deep inside I knew I didn’t have a vocation to be a nurse – I’m not the right temperament – but it took a while to not feel ashamed of that. Nurses are kind and practical and help people and don’t panic – I wished I was like that and not like me. Now I felt the same. Politicians (who weren’t even doing it themselves) seemed to think that caring for sick elderly parents came naturally to good people, and many good people, blogging and tweeting about caring, seemed to feel the same way; they were upset about things which happened to the people they loved – and I felt like that too – but they didn’t seem to feel upset that they were carers in the first place. So what did that make me?

Thankfully I have a very loving husband and children. My brothers and their partners helped when they could. I had friends and, thanks to my GP Practice, I was assigned to a trainee Psychotherapist who listened to me and helped me cope with the stress of being a carer and the feelings it brought up in me. A wonderful dementia outreach nurse came to help us. My GP practice was really supportive. And I am an adult. I had my writing and I my family gave me breaks. I got through it. But only just.

I think because I was finding it so difficult I was particularly outraged when I heard Mr Cameron, as our Prime Minister, praise a group of young carers and say what an important job they were doing and how much money they were saving the country. This was well-meaning but it made me so angry. These were children, for goodness sake. I had had a good life before I was a carer, and I had a loving husband who kept telling me how lovable I was. I wasn’t alone. I also had four very kind teenagers – I was proud of their caring natures but I was most certainly would not have wanted them to be official carers, no matter how much money that would save the country. The country – our country- has no right to cut funding for social care and use children like that.

So I wrote a book about a young carer. My book did not reflect my experience as an adult carer, as I couldn’t cope with exploring the depression I had felt and the particular stresses of caring for someone with dementia, so I decided to write a lighter book but which would still somehow show how difficult it was for children being carers, and how not all children are naturally ‘good’ at it, nor should they be expected to be so.

My agent Anne liked my first draft and rang me and told me that The Children’s Society were on Radio 4 talking about their campaign to support young carers. She suggested I might get in touch with them. So I did. I went up to talk to them and I told them that I was writing a story about a young carer but I didn’t want it to be a sentimental story which said it was a good thing that there are young carers. They said they totally understood and agreed – they knew that young carers were having a very hard time and had produced this report:

It said how many children in our country were carers – a staggeringly large number – hundreds of thousands. Hundreds of thousands. It says that there are carers officially registered as young as five. Five!!! We’re talking about babies here – little children who are learning to tie their shoe laces and who believe in the tooth fairy. It says that on average that there are two young carers in every class. That it is proven that their educational qualifications will be significantly much lower than that of their peers. That they feel ignored and hidden, isolated.

I find it so shameful the way we treat adult carers in our country – the lack of support, the stress they needlessly experience. But I think it goes beyond shameful that we have young carers registered as young as five. In fact, in the wonderful photographic exhibition I went to there was a photo of girl who had been giving insulin injections to her mum from the age of three. Three! It makes me think of the young workers in the cotton mills or down mines during the industrial revolution, or the boys being sent up chimneys. How can this be happening today under our eyes?

‘Dog Ears’ is not full of angst. I tried to write a fun story. I made Anna the narrator a lovable, optimistic ‘normal’ child busy with being a Year 7 at school. There are jolly doodles in it. I did not write a sentimental story about a young carer – because I wanted her problems to jar – for it not to feel right or natural when she gets given more and more jobs to do – and not right that the only person who listens to her is her dog, Timmy. I hope it is an enjoyable story, and even makes readers laugh. I have put funny things in it, and Anna is a very positive person, and there is a happy ending. But I hope that its publication means that it also comforts any young carers who are reading it, and makes others think about what might be happening to that girl or boy in the corner who doesn’t seem to be very chatty, or who is always tired, or late with their homework. I hope it will increase support for The Children’s Society campaign to help young carers and take the burden off them. It is, to the shame of we adults in this country, far too heavy.

This article first appeared on Anne Booth's blog. It is republished here with thanks to the author. We are publishing today (9th June 2016) to mark National Carer's Week.

© Anne Booth

Anne Booth is the author of several children's books, including 'Girl with a White Dog' (nominated for the 2015 Carnegie Award) and 'Dog Ears'. She was a carer for her mother for five years.

Keywords:carers | young carers
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