#WhoCares4Us?

Monday 16th July 2018

So tonight I went on twitter after a few days away; my caring role took priority, and there it is! Almost 8 million unpaid carers in the UK according to a recent study. It’s what all us carers know only too well. The official figures are never anywhere near the reality of it all…this is more like a real figure!
Families struggling to cope, carers often getting little or no recognition or support…and how many of the almost 8 million are going to be children?( Young carers!)
As many of you know this is so close to my heart. Everyone in my family has a disability of some sort and we all muddle through, but the one that takes priority is the most invisible of all, my husband’s rare brain illness. I became his carer after just 7 years of marriage, age 29! My children were just 5 and 2 when they became young carers. 15 years later, and caring has dominated our lives for all those years.
On the one hand things have got better in that there’s more awareness about carers than there was all those years ago, but on the other hand things are worse than ever. Government cut backs have led to young carers projects closing up and down the UK…including the one which both my children attended.
Carers save this government £132 billion a year, that’s the same amount that it costs to run the NHS! Seriously, we do! So, isn’t it about time that society recognizes us and supports us? Is that really too much to ask?
I’m signing off now, but before I do, I’m adding some of the young carer’s photo quotes that are going to be in the Who Cares 4 Us books* (due out next year)…it’s only right they have the final say in my mind.
Victoria Lewin
http://www.victoria-lewin.com


*The Who Cares 4 Us? series, is a series of books for schools that I’m working on, covering young carers awareness, disability awareness and bullying. The aim is for students to gain a better understanding of what life is like for young carers, and people living with disability and chronic illnesses. To help students have more compassion and tolerance through understanding what their lives are really like.
I’ve got guest writers contributing poetry, art, case studies, stories and more, from the UK, USA, Canada, New Zealand and Australia!

The illustrator Jeff Phillips has done all the illustrations for this series.  These books are designed for schools to use worldwide, because it’s a fact that no matter where you live in the world, the issues faced by young carers are the same!*


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Artwork by Talia

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CW 3
Illustration by Jeff Phillips
CW 4
Illustration by Jeff Phillips

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graduation

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#CarersWeek2018

 

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So, as Carers week draws to a close I wanted to write a blog to talk about what it means to be a carer, and especially how important it is to support young carers wherever they might be in the world.

My contribution this year was a podcast interview with the amazing Jen Hardy, who is not only a friend of mine, but a true inspiration. (If you haven’t heard of her, check out ‘The sick Mom’s Guide by Jen Hardy.’)  I’d promised to do this podcast about 6 months ago, but as it turned out I wasn’t well enough to do an interview thanks to my whole family (including me) coming down with Aussie flu for 12 weeks, closely followed by a dose of shingles for me. :/  But as luck would have it, we managed to record the interview in time for it to go out for Carers week.
Here’s the link if you want to listen – https://www.thesickmomsguide.com/episode20/

So, okay, what does it mean to be a carer?

I can only answer from personal experience, but I would say it means wearing your heart on your sleeve. Always being ready to help your loved one, whatever time of day that may be. Always thinking about your loved one, even when you’re not there, you’re worrying whether they’re okay, and you’re conscious that you mustn’t be gone too long.  You organize their medication and make sure they take it.  Make sure they eat and drink (I know that may sound bizarre to anyone who hasn’t been a carer, but that is the way you think, especially if your loved one has a condition that makes them faddy with food.) You always feel responsible, there’s no way of avoiding this, it comes with the territory. On the positive side, you feel good for being able to help someone, it’s good for your own soul, and you discover strengths you never knew you had.

These are just the basics of what it feels like to be a carer, and these are my personal experiences of caring for my husband since he was diagnosed with a rare brain condition (IIH) in 2003, and then developed a subsequent brain injury because his IIH was mismanaged in the first year.

Imagine all of the above and then imagine how a child feels when they have to help to care for a family member. They want to look after them because they love them, but being a young carer isn’t easy!

How do I know?

My children were 5 and 2 when my husband was diagnosed and so they grew up as young carers. Although I was the main carer, they were emotionally supportive when they were younger and then as they got older they helped out practically.

When they were younger, none of us saw ourselves as carers, it was only when my daughter started struggling at school (when she was being bullied for her caring role) that we sought help and the term young carer was heard for the first time.

In the podcast I did last week I talk in depth about what it’s like to be a carer, to live with a disability yourself and why it’s so important that we talk to our children.

https://www.thesickmomsguide.com/episode20/

When a teacher was harshly judging me for my honesty, I actually talked to my husband’s neuropsychologist about it all during one of the therapy sessions. Do you know what his reply was?  Be honest with your children. DON’T try to shield them from this. There’s no way of shielding them from something so complex and it’s better that you talk openly about things instead of trying to shield them, coz all that does is allow their imaginations to take over. The monster they’re imagining will be a million times worse than the truth!

So the next time this particular teacher had a go at me for being honest with my children about their Dad’s brain illness, I told her what the neuropsychologist said. I didn’t want to argue with this teacher but she was so deluded about young carers, it wound me up. Instead of asking how the school could support my daughter, they criticized my parenting…they also said that their school was ‘a nice school, and we don’t have bullying!’

So yes, folks, these people do still exist. The ones who turn a blind eye to bullying and try to criticize your every move… BUT don’t let them deter you.

Talk to your children about what’s going on at home. Involve them rather than shutting them out. Try to explain what’s going on in simple terms… and most importantly ALWAYS TELL THEM HOW MUCH THEY’RE LOVED!!!

Fill your home with love.

My children are grown up now and although life has been tough at times, we are all close. We just celebrated father’s day and it was sod’s law that it was a bad IH day for my hubby, but we all muddled through. We spent time together, and I lost count of the number of times I heard “I Love You” which made my heart melt.
If you’re reading this and like us, you’re looking after someone with IH or IIH, then I have written the book I wish my kids had 15 years ago. It’s been donated to the IH research foundation and you can get it here by making a donation of whatever you can afford. (every penny helps!)  https://www.justgiving.com/fundraising/victoria-lewin

Finally I’d like to thank everyone who raised awareness for us carers this Carer’s week. We truly appreciate your support.
Caring doesn’t stop because carers week is over though, it’s 24/7 365 days a year. There are millions of carers and young carers worldwide and we save the economy Billions every year, so please continue to share our posts and keep the awareness going. Thanks so much.

Victoria.