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

Monday, 25 November 2013

The truth is the easiest thing to remember.

Dear Ricky,

Having seen a series of tweets you wrote last night I wanted to respond. 140 characters is a little restrictive for what I wanted to say so I've blogged it. 

I'm glad that you tweet repeatedly about atheism.

Some people seem to forget that not everyone who follows you lives within a society which allows for freedom of expression and speech; that there are those who live within far more oppressive and restrictive societies than our own. 

Others forget that whilst they may have identified and embraced their own lack of belief, some are still too nervous of the consequences to voice this due to external factors.

The ties that bind many to a faith they have been raised within, are invisible but strong. No one wants to hurt or disappoint the people we love.  To step outside the accepted norms of familial expectation is daunting at times and none more so than by rejecting religion as a staple of life.

Your tweets on this subject offer an alternate viewpoint. Anyone who feels you force your views upon them is misunderstanding the basic premise of social networks. More significantly they fail to recognise that the status quo of religious doctrine, functions more comfortably for them, by maintaing a 'message monopoly' on public platforms and potentially finds itself shaken by being questioned.

On Twitter I follow and am followed by people of faith, who enjoy being challenged respectfully.  They understand that the discussion and the exchange of ideas is paramount to all crucial debate and recognise that questioning of an institution, or the leadership of faith groups, is not an assault on the people who comprise its membership.  

Those who seemingly become the most enraged by your tweets, are those who speak of offence, which they say you inflict on them or others they claim to speak for.  If any personal belief is weakened by questions oft repeated, or a simple statement of atheism, then perhaps they need to work harder on assimilating more detailed answers than  “Because we say so”.

My point is that in speaking about the things that matter to you, you allow others a chance to know that there is another choice beyond an unquestioning acceptance of  doctrine. Also no individual or group should believe they are above challenge, question or concern. 

There will always be many who attack, who belittle, denigrate and despise you for this, but I’m sure you know, they are not the people who count. The people who count are the ones who allow themselves a doubt, which becomes a conviction that a freedom from oppression, whether that is in terms of sexuality, or reproductive choice, gender equality, equal marriage or in terms of a quiet request for rationale in the face of rhetoric; begins with the freedom to speak your own truth.

I feel your tweets offer this.

Ultimately to me and to many others, truth is preferable because it’s the easiest thing to remember.

I doubt you would consider doing anything other than this anyway.

All best, Nik

Tuesday, 5 November 2013

Living with it

So Emmy is doing fantastically well a year into moving to her residential school.

We don't live in fear every day and I don't make regular trips to A&E anymore.

Most importantly our girl is thriving. She's incredibly busy. Too busy for a visit last night as she was off to her favourite place. A disco run especially for learning disabled young adults and as she has something of a foot for dancing she stayed on the dance-floor from beginning to end.

Her sixteenth birthday party had guests, which was different to last year which featured Emily alone on a bouncy castle. probably one of the saddest things I've ever seen and as a parent of two disabled children, that's saying something. There were no guests because no one wanted to come. Friends slip away when your life diversifies.

She had an activity holiday and goes horse riding and began a performing Arts course in September. She won an achievement award and she has real friends.

She's happy busy and doing well, but after a move into a unit for more able young people, she saw that one of the residents goes home every weekend and this is where we have hit a problem.

Emily wants to come home to stay and she can't. She can't for two reasons. One - the violence is too extreme and too unpredictable and two -She won't want to go back and this is too cruel to expect her to endure.

Sending Emmy away at 15 was one of the hardest things I've ever had to do and I've had to do a lot of difficult things as a carer for 20 years.

She visits a lot and we visit her and it's always a delight but an overnight is too risky at the moment for her and for us.

So tonight again, I'm sad. The sort of sad that gnaws at your bones and rips at your soul as I struggle between the intellectual decision and the desperate need to dry her tears and just bring her home.

I started this blog as a cathartic space and it's proved it's use once again.


I sent my blog out earlier and the beauty of Twitter proved itself again with words of comfort. To Jonathan and Rick by DM to Kaliya and LadyLoki, Ryan, Emma  Bernadette, Kristina, and Polly, by tweet thank you all so much.

Rosemary emailed and with her permission I'm adding her words to this blog because she summed up so well, so many things, with kindness and a beautiful flair with words which is so apparent; but which she she doesn't know she has:

Hi Nicky,

I know how difficult it is to let go, even when it is best for all concerned. Unless been through it no one else will understand the heartache. They don't understand how the violence can be as quick as the flick of a switch, plus the fallout from it that can go on for hours, sometimes days.

I hope as Emmy becomes settled, you can smile more and more. Again looking to the future, not many will understand our worries.

I don't have your flair with words but if you ever want to offload I have broad shoulders and a good set of ears.


x x