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Wednesday, 19 November 2014

#2 Carers Rights Day...What's changed this year?

Hi guys, looking back at my 'Carers Rights Day' post from last year...
http://mazcarer.blogspot.co.uk/2013/11/carers-rights-day.html
Has anything changed?
It's all still so very relevant and in some areas yes there's been changes but in so many important ones I'd have to say no!
SDS (Self Directed Support)
Our SDS care package, is still working well and for us a lot of the uncertainty, stress and struggles with the practical side of caring have been reduced and we're so grateful for the help and assistance we have but I'm very conscious, it's not so for most Carers and on that front I fear, this year there has been little movement.
DWP Welfare Reform
The issues surrounding Carers and Welfare Reform are still very much a worry for disabled people and their Carers and with the push continuing to hurt the most vulnerable in our society it seems likely this suffering is set to continue and isn't that a depressing thought!

I have really tried this year, tried to make sure Carers voices are heard and in the places where policy is influenced and made! For now, I really feel that's the only way we can begin to make any positive moves for change - so be it, Summit, Conference, policy or board meeting, I've pushed the real issues Carers face, in hopes those who make law and can positively influence things will understand and make the necessary changes!

Stay strong my friends, better days must surely be coming!
(((hugs)))
Maz x

Friday, 14 November 2014

What a week, Jabs, GP's keeping going...

Hi guys, what a week we've had!

I was right about needing time at home after the Flu jabs - Coo was poorly, he developed a cough and a temperature and additional seizures kicked in too - not an easy one to cope with but on the plus side I was absolutely fine and thank God for that!
We waited it out a few days in the hope things would settle and it was just some effects from the jab, but...no - never one to do things by halves - Coo got sicker and the dreaded vomiting seizures returned  so it was time for a rethink!
I'm always concerned when the vomiting seizures show up, we had a nasty bout of Aspiration Pneumonia before and it really was the worst of times! These seizures just makes everything scarier and so much more difficult to deal with. The noise, the choking, the fluids, the rest...getting the picture Yeah thought so...enough said!
#Visit to GP 1
Our GP is a lovely guy, he's good with Coo and he listens...so first things first, AED (Anti Epilepsy Drugs) are usually all over the place when Coo's ill and if they're too high (or too low for that matter!) things escalate so - bloods done, next - chest, he's prone to infection after Pneumonia and especially this time of year!
Everything seemed ok so we sat it out, stayed home and just hoped for the best - not really a good week.
#GP visit 2
Fast forward a week, things are no better, maybe worse so back we go!
Blood results are back...they're high, not toxic yet but too high! - safe range is 10-20 and Coo's currently at 25 - there's a concern but and it's a big but! He now has developed a chest infection and needs anti-biotics and this will all effect the drug levels too!
#Decisions, decisions...
Do we stick and see if they come down on their own? Do we reduce the doses and trigger yet more seizures? Decisions, decisions! I think that's one of the worst parts about caring, influencing and making decisions for another person and sometimes there really is no easy answer, you just gotta trust the judgement, hope for the best and hang on for the ride!
Caring sure is a roller-coaster ride at times and...it's never boring that's for sure!
We've talked it over and decided to wait for a few days and regroup - hopefully by then, we'll have caught a break and things will be back on the up!
Meantime, another week at home is on the cards.
To keep me sane I'll be soup making (this week it was creamed butternut and carrot!) and crafting and my passion...harping! Not the scolding, angry type but...the musical variety and judging by the photo, harpings been soothing people for the longest time! lol
Enforced time at home used to bother me, I used to feel hemmed in and kinda caged but as time has travelled along, it's easier and it so helps we have an SDS (Self Directed Support) care package in place. It means however bad things are I can still escape for a bit and more importantly - sleep soundly a few nights a week!

Onward and upward!
 As my granny always said - "It's a good life if you don't weary"
so...here's to not wearying!
(((hugs)))
Maz x

Saturday, 1 November 2014

SIB, Toolkit & Carers Scotland Summit...

Hi guys, it's been a busy few days, with meetings galore!

SIB...
Thursday's North Ayrshire Shadow Integration Board meeting, went really well. There were both interesting and thought provoking presentations on the day and opportunities for questions too.
Unfortunately the meeting over-ran and I had to leave early - typical Caring responsibilities, respite and transport issues this time, sometimes things just get in the way don't they!

Carers & Service User Reference Group...
I'm content the SIB director has taken forward my concerns surrounding our Carer and Service User reference group - sadly it's been drifting for a few months- but I'm confident, this group will now continue in some shape or form and it doesn't really matter which, the important thing is that Carers and Service Users voices continue to be heard and at a level where they can influence policy!
It's only when we work together, things improve!
I'll follow closely and just see where this goes!

The other big event this week was...
' The Carers Scotland Summit'
I travelled with members of Three Towns Carers, from the coast up to Stirling for our Annual Carers Summit. It's where Carers from all over Scotland meet, share information and discuss the issues that are important. Just what is (and isn't working for that matter), for Scotland's Carers. It's where we share good practice, input on Legislation and influence new policy too - so it's a big deal!
I'm glad we made the trip, it was an interesting day and...
Carers Scotland launched...

I'm taking it a little quieter for this week as both Coo and I got our flu-jabs today and going on previous experience, we'll need a few days at home so I'll be cooking, crafting and harping for a bit instead of gallivanting out to meetings!

We're ok and I hope you're doing ok where you are too!
(((hugs)))
Maz x