Friday, 29 November 2013

Carers Rights Day 2013

It’s carers rights day today and you can find out all about it here.

I’ve been an unpaid carer for twenty years and finding out about your rights, entitlements and welfare benefits it’s a crucial initiative for a group of people on whom society depends. That may seem a bold assertion but a couple of years ago I did a calculator to assess the monetary value of the caring I did and discovered I was worth £186,000 per annum to the economy.

That is the saving I’ve made the country in one year when you multiply that by the 20 years I’ve been caring that’s possibly slightly shy of a Bank chief’s pension or their annual bonus… I’m not sure. When you multiply that by the millions of carers in this country that’s a pretty big contribution.

I used to get carers allowance every month. It was the exorbitant figure of £172 per month. Given the hours I did and the physical and mental exertion this requires, given also that it negates much hope of future employment due to the impact on my CV (unless I want to be a paid carer) then just over £60 per week is a nice gesture but not really commensurate with the work carers do.

So having detailed the link for carers to access, I wanted to use the rest of this space to highlight something else.

Carers most constant companion is guilt.

Mum in 1999. She died from Alzheimer's disease in 2011

You never think you’re doing enough because you can’t ever do enough.  You neglect yourself your friends and your extended family because of exhaustion, diminishing frames of reference/shared interests and because of time.

Anytime you spend away from your caring duties is spent fretting about being away from your caring duties or thinking of ways to be a better carer, or remembering that thing you were supposed to do as part of your caring duties. So it’s a pursuit of diminishing returns.

I’m sure there are carers who have huge friendship groups.

The majority of carers I speak to have experienced things differently.

People are still afraid of difference and this difference extends to carers because we live our lives to the beat of a different drum.

It’s one that revolves around medications, doctor’s appointments and meetings.

When you attend these meetings you are usually the only person at the table who isn’t paid to be there and it’s daunting when confronted by professionals who know everything. The best professionals know how little they actually know and so tend to listen far more than they talk. Cherish them. As carers though you have 24 hour training and practical experience to offer and this is equally as crucial as theory.

The other aspect in caring is the reason you are doing this. In every family there are those who do and those who see you doing and breathe a sigh of relief.

The same people often care for their elderly parents their disabled children and their sick in laws. Funny that isn’t it.

Perhaps this carers day might send a message out to siblings of carers that in fact pulling your finger out and pitching in might lessen the need for you to remark on how tired your sister or brother is looking. Or how quickly they seem to lose their temper with you “these days”, or indeed where you think they may be “going wrong” generally…Just a thought, Perhaps if you were a little less self involved you could help rather than criticise those who do care.

Making time for yourself when you’re a carer is at the bottom of a hugely long list of other things that you’re aware you need to get around to “at some point”

Mum with Lizzy 1994 

Like sleeping, eating and addressing those symptoms, which are becoming harder to ignore; making any time for yourself is a concept, which makes you laugh a hollow laugh. There aren’t enough hours in the day as it is.  I had to fit in going for an x-ray for broken bones from challenging behaviours around other people’s availability to care for the girls. That’s the reality.

But it really is crucial because you are the foundation of the life you inhabit. It is true that if you fall apart, every thing falls down and it’s more likely that you will fall apart, if you don’t take any breaks. It’s not just your mental health but also the cumulative effect of sheer exhaustion.

Although we are conditioned to believe by society and this greedy government that caring at home is the only way, it’s much cheaper than investing in good care provision, sometimes this becomes impossible.

Finding a good care home or residential school is vital.  Do as much research as you can, but also know that nothing is 100%. This is equally true of the horror stories you will read about things going wrong. This will compound the enormous grief and guilt you are already experiencing but remember in almost every case it was a dedicated carer or nurse who blew the whistle.

For every abusive paid carer there are so many more who are kind and gentle loving and dedicated. As I’ve being saying for years, Harold Shipman is not every GP and he does not define or describe the NHS. This is also true of social care and all those who work within it.

Mostly though for Carers Rights Day, I wanted to send my love. Not sure how many people will read this but if you’re reading this and any of it has chimed with how you’re feeling please know that you’re not alone.

The pressures of our lives mean that we are at a higher than national average rate of divorce and family breakdown

Like many carers I reached my lowest point a few years ago. As Phil came into the house I ran out, jumped into my car and drove down to the river. I couldn’t cope anymore I was broken. I was so sure that I didn’t want to live.  So sure that I wasn’t doing anything right.

I just wanted everything to stop.  I sat there for the longest time and gradually remembered the reason why this wasn’t going to be an option for me, why there was a reason to keep going, to endure and not to give in. Three reasons at that time, Mum, Lizzy and Emily.

I thought about those carers, who are repeatedly let down by the system and to add insult to injury judged by society when they ask for help, or realise the needs of the person they love are too great for one person to manage. I still think about them everyday.

It made me determined to keep shouting, and to keep bloody fighting. 

So I will, just like the millions of carers before me and the many millions to come. 

Happy carers rights day. xx

Lizzy and Emily 2001