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Tuesday, 24 April 2012

Direct Payments in Scotland...

Hi guys, I came across this and thought it interesting.

It's from the blog of Lesley Riddoch...

The Scottish Government's response to the consultation (Self Directed Support) (Scotland Bill) 2011:
'Employment of close relatives via direct payments'

40. The question of the employment of close relatives using direct payments was raised by a number of people. We understand that the current regulations on this matter are interpreted in a variety of different ways, with some councils allowing this in only a very narrow range of exceptional circumstances. In our view where the employment of a close relative is appropriate - in other words, where it is the best solution on hand, where it will achieve positive outcomes and where it is the informed choice of the disabled person and the carer - a local authority should support the family to put the necessary arrangements in place. In the lead up to the Bill's introduction we will consider the range of appropriate and inappropriate circumstances, with a view to laying a fresh set of regulations in the future.'

I'm so glad my local authority are supportive, it seems other councils are not so helpful - thank God I live here!
Maz x

Sunday, 22 April 2012

Define normal challenge...

Hi Guys, I came across this and thought it was a good idea.
It's a define normal blog challenge!
Define Normal Badge
Well, what do you think? Sometimes, I tend to forget, what we perceive as normal, other people from what's considered normal families are kinda shocked by!

This week, well to start with, Coo's speech was a little slurred and he felt poorly so...

Appointment  #1 was on the cards -
More blood tests to check AED (Epilepsy drug levels), were ok and white cells too, just in case he'd picked up an infection...again!

Appointment #2  - That was for the results and to get the drug doses adjusted as he did have an infection!

Appointment #3 - Well, that was the most concerning one as it was with the Neurologist. It seems we're at the end of the road with drug therapies, there's little improvement in seizure activity levels and while that's bad enough, the main issue was the fact, our Neuro calmly dropped into the consultation, the fact Coo is now a high risk for a SUDEP, a sudden unexplained death in Epilepsy - well...okay.
Of course we accept this and take it in our stride - we've always known there was a risk and that's normal for our family. Just another ordinary week but while it's ordinary for us, it's not so for the other people around us and that's the bit you sometimes forget about isn't it!

People were genuinely shocked by this latest turn of events and when I think about it so should we have been - shouldn't we?
On reflection, I think it's part of our coping strategies, you just kinda accept what is said, take it on board and carry on regardless don't you!

I wonder what kind of 'normal' week the other bloggers have had - I guess we'll see, won't we!
Maz x

Carers circle of support...

Hi Guys, with all this talk of a more personalised care model on the horizon, I'm feeling more optimistic!

Maybe the thoughts and hopes in my poem will reflect life for Carers in the future and just maybe we can avoid the pain and suffering of that unsupported place I call the black hole...

‘The Carers Circle’

We care because we love.
We love because we care,
It’s as natural as breathing in freshest Air.
To love, hope and strive and continue to care.

This circle of caring, life, love and hope.
That’s what helps us continue and aids us to cope.
There’s another circle, it’s hopeless and bleak, a black hole.
It pulls down Carers, and so saddens their soul.

Some support is needed to help Carers through.
Please make sure they get it, it’s all up to you.
We can help with support and speak our mind.
For one day as Carers ourselves we may find.

By Maz

I honestly do feel, we Carers are living in a kind of circle at times and I wish we all had access to a huge circle of support too!

I hope you liked the poem!
Maz x

Carers Allowance...

Hi guys, I visited another Carers blog recently and here's what she said on Carers Allowance...

'I received a letter this week from the Department of Work and Pensions - I was overjoyed to learn that there has been a rise in Carers Benefit, I am now going to get £55 per week to do what I do.  Appparantly I can earn up to £100 a week without this payment being affected. However as all my waking hours and many of my non-waking ones are taken up with caring or the paperwork and admin that goes with caring (those stoma bags and catheters won't order themselves, nor will those forms be filled in by anyone other than me or the laundry get done or appointments get arranged and attended...)  the chances of me doing any sort of paid work, meaningful or otherwise are out of the window.'
 It made me think, I too received the same letter, and she's right - Carers Allowance is woefully inadequate for the level of Caring most Carers provide every day with very little assistance, financial or otherwise!
The sad thing is, with each passing year, I've come to expect things just won't change, especially where the DWP are concerned! If like the Carer above and someone like me too, with a heavy caring role, you're just not going to be able to combine caring and real outside work (the type that helps pay the bills!), your earning potential is virtually gone so it's always going to be a financial struggle to keep things on an even keel!

I'm luckier than most.
At least my local authority accept our circumstances are difficult and offer some assistance so I can keep on going. We have a Direct Payment, that means at least I sleep two nights a week, I have a couple of hours off to myself too and the all important respite  - 3 weeks a year!

Now, while that doesn't seem a lot, it makes the world of difference to me! 
 It's so much easier to see the sun, when you're not totally stressed and struggling.
Trust me I know! It's only six years ago, we had no help at all!

That meant no un-disturbed sleep and definately no time out!
Things have improved a good deal for us and I'm only sorry that it's not the case for all Carers...yet!

That's why I continue to push for better services for Carers and their loved ones. I know how much of a struggle it can be and also how desperate the whole situation can become, when you're left 'doing it all on your own'!  It's both  a worrying and scary place to be so with that in mind...

I'm using some respite hours to sit on the Advisory group with my local authorities Personalisation program. They're moving to a more flexible model of care and I've become involved as I honestly feel it's the best way forward for Carers and disabled people to get a better service!

If my involvement means even one Carer or disabled person gets a better deal, then it will have been worth it and I will be happy!

We have to keep trying don't we!
Maz x

Wednesday, 18 April 2012

Carer, Coo and Hospital too...

Hi guys, it's been another difficult week I'm afraid!
When are we gonna catch a lucky break!

Still saddened by our wee dog leaving us last week and a seizure increase as Coo's been struggling, we set off to an appointment with Coo's Neuro.He's a really nice guy, he's always friendly and treats Coo kindly  so...what was the problem?

Well, it seems, we've reached the end of the road with AED's (anti-epilepsy drugs) yet again and while it's not a new area for us - we were at this point many years ago - it's still a blow.
So what do you do now?
Well, you just manage, kinda carry on regardless and hope some new meds come on the scene.

I think, if I'm honest, we both thought this was coming as when Coo re-entered the system six years ago there were four new drugs on the market and he's tried them all so it shouldn't have been too much of a surprise - should it?
I think, maybe, you always hope there's something else to try and who knows maybe in a few years, something new will pop out of the wood-work!

The meds aside, what I did find difficult, was the Neuro discussing SUDEP -  it's when a sudden unexplained death happens in Epilpesy.
Now, don't get me wrong, we both know Coo's at risk from lots of problems - his horrible time with Aspiration Pneumonia, left us with no illussions on how quickly things can deteriorate. We tend not to think about this side of things, I guess it's a coping mechanism especially when things are tough.

I think the Neuro. brought home, just how tenuous things really are and I suppose while we were still trying out other meds, the issue of a SUDEP didn't really need to be raised and now we're at the end of the road again, well, I guess it had to be discussed.

Coo didn't even aknowledge the situation at all!
He just let it slide!
Although, we did discuss it over a cuppa later that day and we've both decided...

 If, and I mean if, the worst were to happen, well, we've no regrets, we've had a good life together and lot's of love both between and all around us - so in the full scheme of things, we're lucky aren't we!

So...I'm ending today with some sunnier thoughts...
We've decided. We 're not going to dwell on things.
If new drugs come, then fine and if not? Well, we'll do what we always do...keep on going together, what else! lol

We're doing ok and I hope you are too!
Maz x

Thursday, 12 April 2012

Goodbye my wee old dog...

Hi guys, Coo and I are sad today.
Our wee old Jack Russell Simba, had to be put to sleep and it's been so very difficult for us.

She was nineteen years old - so a fair old age and in good health until recently and it's been a bit of a blow for us so...I'm sharing some of my favourite pictures of her today!
From the photograph above you can see she liked pinching my carrot seedlings!

...and on occasion even my strawberry patch was raided too - nothing was immune from her munching! lol

My favourite one ever!
It was taken only last week by my nephew.
Thank you so much Craig!

Our wee dog, Simba, was with us so long she kinda grew up with our kids!  She always lay up beside us when we were ill - especially Coo - she kinda knew when he was really poorly.
She saw our children through the measles, the mumps and a multitude of other childhood lumps and bumps too! lol

She was a grand wee dog, we loved her dearly and we will miss her terribly!

Here's to happier times for us all!
Maz x

Monday, 9 April 2012

Results and roller-coasters...

Hi guys, we've heard form the hospital re - Coo's op.
It's good news of sorts...I suppose - we're trying to be positive!
After all the problems and tests recently, Coo's consultant say's he's done all he can and will keep an eye on things but he now feels Coo's problems are probably drug related.
He has been on anti-covulsants (AED's) among other meds, for over 30 years so I suppose it could well be related - who knows!

The question now is, where does that leave Coo?
I guess it's a bit like his seizures - live with it.
Poor Coo, nothing is ever easy where he's concerned!
***and this week?
Well, more hospital appointments on the horizon - this time with the Neuro so...
I'll let you know how that goes!

 It's so true, the life of a Carer is never easy and it's never boring either! It's a bit of a roller-coaster ride at times and I guess you just gotta hold on tight and hang on for the ride!

 I hope you're doing ok where you are!
Maz x