Happy days, Hospitals and Carer Thoughts...

Hi guys, did everyone have a happy Christmas? Ho ho ho!

We had a lovely day!
We made it for dinner at Coo's sisters and a great time was had by all!
We're still struggling along with the usual health hassles but everything went well on the day and for that we're mightily thankful!

The cheerful, festive feelings didn't last long though and we were at the hospital for yet another Christmas time - my MRI arrived on the horizon. I suppose it was better done sooner rather than later but I'm just fed up of the whole situation already!
I've discovered I'm not a particularly good patient.

I really hate being on the cared for side of the equation and can sympathise with Coo...it's down right rotten! Now, I'm not sure if it's the continuous appointments, meds hassles and bloods with Coo over the years or not but having lived it so long with someone else, I just don't seem able to muster up the energy to go through it all myself - I feel kinda battle hardened even though I've never really been ill myself at all! Does that make sense?
Who knows, maybe it's just par for the course for most Carers!
Anyhow, The symptoms are no worse, they're no better either...but they're no worse! We're both coping ok and I've survived the first round of tests so...now we wait!

2014 has been a great year!

Health-wise it's been challenging but we've been so blessed in other ways too! Our grand-daughter Jessie's surgeries went well, her walking is improving all the time! A new wee grand-baby came along too! Wee Islay arrived in October, she has similar hip problems as Jessie but they'll fix and she's bonny, hale, healthy and happy!
All the buzz with the commonwealth games and my wee stint with the Baton gave us a major feel good factor too so all-in-all it has been a good year this time around!

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

Health issues, Carers & SDS...

Hi guys, it's been a very difficult week, Coo's is still poorly, we're waiting for blood and x-ray results and to cap it all I ended up in A&E myself.

I had numbness and tingle in my hand and face for over a week, I had no pain so wasn't that concerned but I caved into pressure from family, got a last minute cancellation and saw our doctor. Fully expecting a quick once over and maybe a prescription or even better an...it's fine don't worry...but no - I had to go to A&E and wait and wait!

I won't go into all the details here and now - I think that's a post for a stronger day- all I'll say is, the whole A&E experience fell very short of the quality of care I had expected. Waiting times so in excess of current guidelines, I could have cried in frustration! I'm not exactly sure what I'm going to do about this yet but that's a fight for another day, not today!

By contrast, hospital care itself, leaving aside the eight and a half hours wait in A&E, was caring, friendly and excellent quality and for that, I am so very thankful as it restored my faith a little. The staff we're open, friendly, tried to make my stay and as a Carer, the need for it to be over and me out of there as quickly as possible work but dear-oh-dear what an experience!

Thankfully our SDS (Self Directed Support) care package kicked in seamlessly, while I was admitted, Looby came to stay an extra night & day with Coo and this really meant, I wasn't worried so much about how things were faring at home and that so helped!

Thankfully my CT scan was clear, I need an MRI and I've agreed to have it done as an out-patient but for now I'm just trying to gather some strength, re-group and re-assess things a little.

I'm ok and we're coping!
(((hugs)))
Maz x

Christmas trees, Carers and happy time-outs...

Hi guys, Christmas is definitely upon us!

I guess, I can deny it no longer! The lights and Christmas trees are going up all around me too so yup...I guess it's here! lol

The last month has been a real struggle again. Coo is still so very poorly and we've been mostly at home, living quietly. The infection he picked up around the time of his flu-jab, just didn't go away. No matter what we tried from cough and cold remedies, right up to and including anti-biotics - nothing made any difference what-so-ever! The infection continued, the seizures spiralled and we were back on that roller-coaster ride again!
Land sakes...what a month!

So what have I been up to then?
Well, apart from coping with Coo that is! I've been busy, with my wee Carer Group. Even when things are difficult, it's important to spend time with other Carers, they know just what it's like and can really support one another and...here are some of our wee group!

We were at a  local Christmas Fayre on Saturday fundraising for our group. This wee day is important for us as it means we can have wee days out and lunch throughout the year.
Now, that might not seem much but for lot's of Carers it's a real life-line, a window to the outside world and just a wee time-out away from caring!

One such day is tomorrow - the group are going to Cardwell Bay!

Its nice, especially this time of year, it'll have snow flakes, trees, twinkly lights and tinsel all around... and...I'm  going!
I'm one of the lucky ones and have an SDS (Self Directed Support) care package in place so our PA Looby, will come stay with Coo, I'll know he's safe and I will still get to go enjoy it all with the others, forget about things for a wee, happy, while!
I know it's not so for lot's of other Carers, I struggled on alone for decades before we made the switch and got some proper help in place. I  only wish more Carers had such good support too.

Stay strong friends,
(((hugs)))
Maz x

#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

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

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...

 'The Carers Toolkit'

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

SIB, Blustery days, woolly hats & Carer Flu-Jabs...

Hi guys, winter has arrived here!

Just how do I know?
Well... I've been chasing panels from my greenhouse all around the garden and I feel a bit like Piglet in Winnie the pooh and the blustery day and I've a feeling this is just the start!

Last week, some of my wee Carer group (Three Towns Carers), were missing in action. I think this time of year brings added stress and struggle for Carers, everything seems just that bit more difficult in the grey days of winter and I honestly think, grey days make for greyer moods and with coughs and sneezes all around, it's so hard to avoid the dreaded sniffles!

While a cold is a pain in the neck for most people this time of year. For most Carers it means, addition struggles coping in an already leaky boat and a dread they'll be ill themselves!

Speaking of which...NHS, Carers and Flu Jabs!

All being well, we're off for our flu-jabs this Saturday. Remember Carers get free flu-jabs too - see you're Doctor now! Don't just get a flu-jab for the person you look after but...get one for you too!
Trust me, the flu jab isn't really as big as this one! lol You won't feel a thing - well, not really!


Am I slowing down for winter? Heck no!
 I've a SIB (Shadow Integration Board for Health and Social Care) meeting on Thursday in Irvine and the Carers Scotland Summit in Stirling on Friday - I like to keep busy and I'm so grateful for the SDS (Self Directed Support) that makes it possible for me to stay actively involved with things that are so important to me!

Well, it's definitely 'woolly hat and wellie wearing weather'! so...keep strong,keep cosy and splash in a puddle too - it's good for you!
(((hugs)))
Maz x