Jessie The Brave's Birthday Tea...

Hi guys, wee Jessie is two today!

What a roller-coaster ride this year has been for her, between surgeries and Spica casts she's had a difficult time and it's been emotional too but not today! Today...we were celebrating! lol

We decided to have a family tea party and as Jessie's a Burns baby, sharing her special day with Robert Burns no less and being Ayrshire folks....we had some tartan on display too! yeah!
We got a 'Brave' cake as Jessie's a brave wee soul.
I thought it apt and I was going to write on it - Jessie the Brave is 2 today but...I was out-voted! - we're a democracy here, one singer one song and one person one vote! I did get my way with the tartan touches though - a family tartan ribbon all around and it looked real good too! lol

I'm sharing a wee family photo too, it's one with Jessie, her parents and that lovely cake!
No Spica casts and doing so well, we are blessed!

What a lovely end to a really great week!
(((hugs)))
Maz x

What a week...

Hi guys! What a week I've had!

Firstly, the highs...
Tommy's concert was fabulous - what a wonderful night!
Tommy's posted a review in pictures right here....
It was a busy day and a long one too but so very worth it!

Our wee group (3 Towns Carers), left from the coast at three o'clock to travel up to Glasgow and it's with the greatest thanks to Tommy for tickets and Tony too, he arranged all the transport and made sure we were ok! It would have been so much more difficult without their help so thanks guys!

The speeches were both inspiring and touching and the music itself was pretty wonderful! The musicians shared more than their talent, they shared a little of their own stories and showed Caring really does touch all families regardless of fame or finances!
I'm so glad we got to go! We all had such a wonderful time and we've been singing wee snippets of Monday nights songs all week! What a lovely feeling it's brought about!

News...
Oh my! I've been nominated as Citizen of the year and so has The 3 Towns Carers! Now just how cool is that? We're so chuffed - there's lots more worthy but it's nice to be nominated!

My nomination's for my voluntary work with both groups. The 3 Towns Carers, whom I blog about often and...my wee adult learning disabled group  - I so love this group!
With another friend, Coo and I set it up seven years ago as our community just needed a group like it! All the members are SLD, or physically disabled and most are living, with support, in our community and just needed something social and friendly so... 'Care Club'  was born and now we're a wee family too!

The 3 Towns Carers really speak for themselves.

We're a wee band of local Carers who manage to support one another and navigate a way through the minefield that is caring.


The key, the strength really, is the support and love freely shared with one another through all the stages caring brings. From the shell-shock at the beginning, when everything's raw and new, through all the trials and triumphs of finding services and support, to the sadness and trauma when caring comes to an end. We are just there for one another.
It truly is a real caring family!

It doesn't really matter who win's these kind of things, there's loads of good people out there.
It would be nice but I think it's really about people sharing and essentially caring about each other, just getting by the best way they can and sharing a little love along the way!

I wonder what this week will bring?
Keep strong,
(((hugs)))
Maz x

That Carer Roller-Coaster ride...

Hi guys, it's been so up and down this week - we're back on that Carer roller-coaster ride again!

Months ago, we planned to visit the Gaiety Theatre in Ayr - it's been years since we were there!
This week Coo's been struggling with a seizure increase and by Tuesday, I really thought we'd have to cancel but lo-and-behold things improved and we were able to go after all!


We picked the Mercure Hotel for our stop over for three reasons...

1. It's right beside the theatre - a big selling point
2. It was a really good price - they had a sale on!
3. It has a brilliant layout for us - it has a spa with an attached comfy seated area for a coffee etc.

This may not seem important but for us a comfy poolside area is a real bonus! Coo would not be using the spa, it's always an 'either or' kinda deal for Coo. It's just too tiring to do both a swim and a show - trust me, this was learned the hard way and has never been repeated! Anyways, this area meant Coo could get comfy, have a cuppa and pootle with his puzzle book, while I managed to squeeze in a wee swim and Jacuzzi - result! lol

After a snooze we wandered over to the show and had a lovely time!
Back to earth with a bump...Coo's been sleepy and seizing since we came home, he has a temperature...again and I'm so busy this week too!
I'm so glad we have our SDS (Self Directed Support), allowing us access to respite as I will still be able to keep my plans, make my meetings and get to Tommy's Reception and Carer Concert tomorrow. Previously, for me anyways, it would all have been cancelled and I'd have been stuck at home!

I don't resent enforced time at home, it happens and as a Carer, you just get past that! but...I do value the freedom proper support and respite brings. The knowledge, my plans will happen and things that are important to and for me will happen too! It's not so for all Carers but it should be, that's why I fight on and raise awareness where and when I can!

We gotta stand together, stay strong and keep faith in better times!
(((hugs)))
Maz x

Tommy's wonderful Carer Event...

Hi guys, I have news and it's exciting!

My Carer friend Tommy, whom I've blogged about before, has organised a wonderful event, Celebrating Carers and Caring!

I'm delighted he remembered my wee 3Towns Carer group and sorted some tickets for us! A heartfelt thank you! It would have been so very much more difficult for us to manage and we'd have most probably missed out all together! You are a truly lovely guy Tommy!
(((hugs)))
Maz x

I hope he doesn't mind but...over to Tommy....

Here's some further information from Tommy's blog...

Thursday, 2 January 2014

Concert Line up Announced -"Letters Life and Love Stories - A Celebration of Caring in Scotland

Home-grown talent to honour Scotland’s hidden army of carers at Celtic Connections concert!

 

Its with the greatest of pleasure I can announce the line up for the  "Letters Life and Love Stories - A Celebration of Caring in Scotland concert I have been working on over the last months in alphabetical order 

Admiral Fallow, Eddi Reader, Emma Pollock ,Horse McDonald, Hue & Cry Little Fire

Siobhan Wilson. Plus more special guests to be announced

Celtic Connections website, accessible here for info and Tickets - http://tinyurl.com/pfrgr7v

The Health and Social Care Alliance Scotland (the ALLIANCE) and Regular Music with Celtic Connections are delighted to confirm a range of home grown talents will come together to celebrate the lives of many of the 660,000 carers in Scotland and those who support them.  

 

An exciting array of Scottish musical guests, will be appearing On Monday 20th January, Glasgow Royal Concert Hall  are indie folk five-piece Admiral Fallow, songstress Eddi Reader, founder member of The Delgados Emma Pollock, Horse McDonald, Hue & Cry, Little Fire and Siobhan Wilson, plus more special guests to be announced.

On Monday 20th January, Glasgow Royal Concert Hall will play host to Scottish favourites  In alphabetical order...Admiral Fallow, Eddi Reader, Emma Pollock ,Horse McDonald, Hue & Cry Little Fire, Siobhan Wilson.

Plus more special guests to be announced,

for the ‘Letters, Life and Love Stories’ Concert, which forms part of the Celtic Connections Calendar for 2014.

 

The concert will be accompanied by a reception at which the Deputy First Minister, Nicola Sturgeon will address an assembly of specially invited guests including carers and inspirational professionals and volunteers who play a part in their journeys.

 

The idea of the concert came from a meeting with Tommy Whitelaw of the ALLIANCE, Mark Mackie from Regular Music and Celtic Connections  Festival Director Donald Shaw where Tommy shared some of the letters and spoke about ways they could be brought to life by music.

Tommy Whitelaw, who worked for 20 years in the music industry, spent the last five years caring for his mum Joan who had dementia. He started a campaign, ‘Tommy on Tour’ to raise awareness, gathering letters from carers. Now as Project Engagement Lead with the ALLIANCE’s Dementia Carer Voices Project, he speaks to carer groups, health and social care professionals and students as well as key decision-makers who have influence over the lives of people affected by dementia.”

Tommy Whitelaw said...

 

“Over the last few years I have seen the amazing lengths that carers go to through love as well as the transformational impact that special people can have on the carer journey. This event is the perfect opportunity to say thanks to these inspirational people for the role that they play.”

  

 

Letters, Life and Love Stories Concert and Carers Reception

 

"Letters Life and Love Stories - A Celebration of Caring in Scotland” Gala concert will be held at the Royal Concert Hall in Glasgow on 20 January 2014 as part of Celtic Connections programme.

The concert will pay tribute to the love and dedication of Scotland’s carers and the part played by the many professionals and volunteers who contribute during the carer journey.

This partnership event with Regular Music and Celtic Connections will celebrate the lives of many for the 660,000 carers in Scotland and those who support them.  

Tommy Whitelaw, who worked for twenty years in the music industry, spent the last five years caring for his mum Joan who had dementia. He started a campaign, ‘Tommy on Tour’ to raise awareness, gathering letters from carers across Scotland.  The concert is the result of Tommy sharing these letters with Mark Mackie of Regular Music and Donald Shaw, Festival Director of Celtic Connections and a desire to bring the stories to life through music.

The concert will be held on 20th January at 7.30pm in Glasgow Royal Concert Halls as part of Celtic Connections. Tickets can be booked online via theCeltic Connections website , by calling the box office on 0141 353 8000 or in person from the box office located at the Buchanan Street entrance of the Glasgow Royal Concert Hall.

Latest Concert Press Release

Carers Reception 

We are delighted to confirm that the Deputy First Minister Nicola Sturgeon will address guests at the ALLIANCE's pre-concert reception to be held in Glasgow Royal Concert Halls from 4:00 to 6:30 pm.

The reception will reach out to inspirational individuals and groups, asking them to tell us about their journey caring for a loved one, and the motivation behind their caring role.

At the reception there will be a range of exhibition stands from national and local organisations who engage with carers. These partners will each undertake their own project to collect and present the inspirational stories of those they support and represent in an innovative and engaging way.

If you are a twitter user, follow #icarewecare  for the latest updates.

 

 

 

2013, the good, the bad and the down right ugly...

Hi guys, 2013 had some good, bad and downright ugly points!

I want to end this post on a good note so we'll start with the bad and ugly side of 2013!
Like most Carers it's been a difficult year. For Carers, it's truly, never very easy but in 2013 there's been added pressure too that's for sure.
Our government's been less than supportive at times, their 'War on Welfare' and general uncaring attitude towards truly struggling disabled people and their Carers, has caused untold distress and suffering for people, like us, already paddling hard to just keep afloat!
Sad thing is, the up to date stats show there's very little financial gain for our government's stance but they're still intent on their path of social destruction and they've successfully used our media and their 'shirkers and strivers' rhetoric, to turn communities against one another - and that's truly ugly!

Coo and I have struggled through. It's been a difficult year, but also one full of trials and triumphs.
The trials?
Well, as always, there were many difficult times with real health worries throughout 2013.
*Health - living with serious long term conditions is always stressful and difficult!
*Family - Baby Jessie's very late, hip-dysplasia diagnosis was an additional worry, the on-going surgery problems she'd face too.

As if that that wasn't enough, we felt under siege by our own government.

The saga of Bedroom Tax and ATOS  all added to the stress and strain that was our 2013.



The triumphs?
*Health - I'm sure we triumphed - we're still here aren't we! also coming out the other side with wee Jessie -  3 successful surgeries and at last getting rid of the heavy Spica casts.
*ATOS - Seeing off the ATOS threat, wasn't easy, it was very stressful. Coo struggled most, the seizure activity kicked hard, we were stuck in at home on that scary roller-coaster ride again. I guess we just held on for dear life and hoped, they would see sense and the nightmare would end...and it did...for now anyway!
*Bedroom Tax - We so stressed with this issue!
We could not move - our house is adapted - we need the rooms we have, either for staff who come in to help or for respite sleep periods, to help me keep going but yet again, due to the stress of it all, we were plunged into chaos as Coo's seizure activity went off the planet and we again struggled!

We asked everyone we could think of, who had an influence to help.
Our MP raised our plight with the Prime Minister himself.
In the end, we secured a Discretionary Housing Payment but the saga that is 'Bedroom Tax' will raise it's ugly head again in March-April time.
*SDS - We used our SDS (Self Directed Support) care package and funding so successfully! In times of difficulty and struggle, when Coo was well enough to, we disappeared for a few days respite, turned off all the stresses, took a time-out and recharged our batteries for the next onslaught! I'm not sure how we'd have fared without this much needed help and support!
*Speaking out for Carers - I was happy to speak out, share my Carer story and try to encourage other Carers to seek help - we can only help and encourage people to see us can't we?

My granny used to say it's a good life if you don't weary and...she's right!
so...
Hello 2014 and here's to not wearying!
(((hugs)))
Maz x