Worries, woes and time-outs...

Hi guys, it's been a rough few days here.

Coo has really struggled!
Our grandbaby Jessica was due to have surgery yesterday and we've both found things really stressful over the last few days and to cap it all, Coo's had an increase in seizures to boot!
I had hoped after Jessie's surgery yesterday, things would calm a little but sadly further surgery is required so we're still need deep in seizures and stress for the moment!

We had an unsettled night again, a lot of struggle and eventually gave up on sleep around five this morning. - not so good you'd think but actually it worked out ok!

After a mid-morning nap Coo decided, it was such a beautiful day, he wanted to get out for a wee while on his bike - woo hoo!
We had a great time!
We managed to get to the park and the sun stayed out for us too - result! lol

The park really is a favourite place for us, there's a lovely cafe where the pace is nice and restful so we stop there for a wee cuppa and a seat for a while and take time to gather ourselves together for the return journey! lol

Having our bikes has made such a difference for us. It's so great we were able to use our SDS (Self Directed Support), budget to fund them and what a boon they have been - I feel fitter now than I have in years and that must be a good thing!

I'm glad we got out on our wee bike-ride!
It was just what we both needed - some exercise out in the fresh air, a change of focus from our current worries and a wee while out of the house in the sunshine!
I guess cycling, makes me feel free for just a little while and I suppose that too is good for me!


Coo's been sleepy and seizing since we came back but that's the kind of see-saw lifestyle we have and I guess you have to grab with both hands those little sunny moments when you can!

I hope you've had some wee sunny moments too this week,
(((hugs)))
Maz x

ATOS ESA and sense prevails...

Hi guys, what's the old song? What a difference a day makes!

ATOS & DWP have backed down...Oh my gosh!
What a turn up for the books!

So just what happened to acheive such a reversal?
Yesterday we were told Coo would need to go for the dreaded ATOS, WCA (work capability assessment) and medical and today it's all changed! Well, after yesterday's news, I took some time to regroup and today it began...

I contacted both our GP and Coo's Neurologist at the hospital, to check they had been asked for and had submitted reports to the ATOS people - yes on both counts so far so good!

 

Done!

Next I phoned ATOS in Glasgow, mainly to formally request audio equipment be available at Coo's medical. If we were going to have to fight this, we'd need access to as much information as possible - I honestly feel, it's in everyones interest to get their assessment recorded and I'm eternally greatful for the help of our MP's who fought for this service!

Anyways, I gave Coo's details, covered the security stuff and requested the audio equipment and that's where things started to change!
It seems DWP and ATOS have now decided, they have enough information and will not now require Coo to attend a medical after all! It's possible our medical information was late arriving and an appointment was triggered automatically, who knows!

I'd like to think with all the evidence we sent and reports from both medical people involved in Coo's primary care that sense prevailed!
I am just so relieved we don't have to worry anymore.

 I'm glad too, for us, this was over sooner rather than later.

The fight still goes on though! There are too many disabled people and their Carers disproportionately adversely affected by this unfair process, we just can't forget about them!

At a recent meeting, somebody struck a chord with me, she was a wee elderly woman and she said 'if you stand with me, I'll stand with you' and she's right!

We must keep strong and stand up for one another!
(((hugs)))
Maz x

ESA, ATOS and the fight begins...

Hi guys, well it seems, the waiting time is over, we've received a reply from ESA (the Employment and Support or DWP people).

Coo must go for a medical to check he is not fit to work! Now, while this is not totally unexpected, I mean, every day the media is full of people who are clearly disabled and struggling and are assessed as fit to work - it's such a mess and it's all so wrong!

 

I had hope to avoid this scenario with Coo. God knows, we did all we could to try to stop this happening. We filled in the form fully, shared and disclosed information we really didn't need to by sending comprehensive seizure diaries and copies of both his Social Services assessment of needs and care plan in the hope, this would be enough 'evidence' and...sense would prevail  - but no! We must present Coo (in whatever condition he is currently in!), for assessment by somebody who probably won't understand and...we must jump through the hoops - all over again!

Coo's seizure levels have been spiralling since we recieved the ESA50 form and already it's been a struggle so God alone knows how we will cope with this further ESA onslaught!
The worse thing of all is, it's so very debilitation for both Coo and I, it adds pressure and stress to an already very difficult to manage situation and...it just doesn't work and is all so avoidable!
It's not possible to assess a hidden disability like Coo's in this way!

I honestly feel it's a waste of time, asking Coo if he can walk, talk, hold a pen or take a message is just so ineffective. Far better to access information from both his GP and his Neurologist, the people who truly know how Coo's disability effects every aspect of his life. -

They are the experts not the DWP!

 

He's not fit to work, he really isn't! Now, the DWP already accept he needs a Carer - they pay me a Carers Allowance (paultry sum mind you but that's a fight for another day!) so with 15 seizures a day on average, continuing complex care needs and input from Social Services via a SDS (Self Directed Support) care package, you'd think the Department of Work & Pensions, could work this out, well...wouldn't you?
I'm so annoyed and disappointed too I guess, I truly thought well, hoped too that sense would prevail and we'd be ok.

We will be ok. We will have to fight yet again but as my granny used to say - 'What doesn't kill us makes us stronger!'
Here's to staying strong!
(((hugs)))
Maz

Carers, support, friendship and review...

Hi guys, that's Carers Week all over for another year!

So just how did it all go?
Well, I've been busy that's for sure! I skipped some of the fun things as I just didn't have enough respite but I did do the important stuff, the kinda things that hopefully will continue to make a real difference...

• Monday - Carer information & support meeting.
• Tuesday - Protecting vulnerable adults forum.
• Wednesday - The Carers reception at Edinburgh Castle with Cabinet Secretary Alex Neil MSP and Carers Scotland.
• Friday - Anti-Bedroom Tax demonstation - this is adversely disproportionately affecting disabled people and their Carers.

It was tight and took some planning but I sure did manage to pack a lot in didn't I! lol

I've spoken out about Carer issues, raised awareness and hopefully given some people who are in a position to help, food for thought!


I truly believe it's only by working together, we can effectively achieve changes for all Carers!
I'm tired but happy and it's been a good week so...jobs a good 'un! lol
I hope you've found support and had a good Carers week where you are too!
(((hugs)))
Maz x

Carers Reception Edinburgh Castle...

Hi guys, I've been busy again!

This time I've been to a reception for Carers held in...Edinburgh Castle - woo hoo!

The castle is an impressive place isn't it!
It's lovely in summertime but really treacherous in the frost of winter!

Alex Neil MSP was hosting a 'Carers Week' event and invited Carers from all over Scotland to celebrate their input and...about time too I say! It's nice to see Carers being recognised for the work they do. It's a difficult and demanding job and it's also great to see them having some time-out too!

So glad we have our SDS (Self Directed Support) care package as it enables me to attend days like this one. Looby comes to provide the care and keep Coo company and I can get away knowing things will be ok!
Before? ...Well, it was just too difficult to get away and I'd have, had to decline and stay home and that's a harsh position to find yourself - trust me I've been there and it's not nice!

Thankfully, for us, this doesn't happen anymore. Through SDS, we are supported to take part in things that are important to and for us and that makes all the difference in the world!

God willing it will soon be so for all Carers!

I hope you're ok and managing a little time-out too!
(((hugs)))
Maz x


Protecting vulnerable adults is everybody's job!

Hi guys, I've been out with my Local Authority again!

I attended a forum on protecting vulnerable adults yesterday and while there, tried to make sure I gave a good insight into things from the Carers perspective! Five other Carers were invited from our group and convened some of the conversations and also raised some issues they, as Carers, had encountered.

From Local Councillors, NHS, Police and Social Services, to third sector orgs. and community groups, there really was a good mix and the day was informative and interesting.

 

I feel, it's important for Carers to be involved in this type of event as it's where you find, all in one room, a wide rage of agencies and services who basically provide information to or are involved with the decision makers and that is important!

Sometimes the decision makers just have the paperwork, the theory and a good intention to work with while deciding on actions that will effect peoples lives so...if Carers can meet and influence things positively, help give a clearer picture, well...all the better I say!

The first time somebody called me an activist, I was a little bit shocked and kinda offended I suppose!
***and now?
Well...I think of it like a badge to be worn with pride!
I guess being a Carer has changed me over the years!

We must always remember, it's everyone's job to protect the vulnerable! One little voice might not seem much but together, that can be a very different story!
If you get the chance to influence the decision makers, those who really hold the power to help - don't hesitate, just smile, take a deep breath and tell them how it really is!

Keep strong!
(((hugs)))
Maz x

Carers & the importance of Respite...

Hi guys, we've been away on respite for a few days.

After the last few days of struggle we decided just to go for it and it's been great! We didn't go far just up the coast again but...the other way this time, towards Ayr!

The holiday park, is set in the heart of the countryside and if the weather is kind, it's a wonderful place for a wee break. Very calm and relaxing and...just what we needed!

I'm glad we decided to take some frequent short breaks instead of the usual two weeks away most people want for holidays. This way, we've been able to access a few days here and there exactly when we've most needed them and it's worked out really well. I think it's been so much more accessible and manageable and more importantly a lot less stressful too!

Well, just what did we do?
We had a great day out at Culzean Castle. It's a magical place!
A wonderful castle, beautiful gardens, swans, ducks, lovely scenery and ice-cream!

We had a visit to Robert Burns Cottage too!

Our wee grand-baby Jessica is a 'Burns baby' (being born on January 25th!) and as such, she came along too!

What a lovely, family day!

We managed some beautiful walks on sandy beaches and even more ice-cream eating too! lol

Regular Respite is so very important for Carers. It's the difference between keeping things together and coping and an inevitable melt-down! I remember those days, where we struggled on alone and were drowning and I never want to be in that place ever again!

I love the fact our SDS (Self Directed Support) is so flexible! We've both had a lovely respite break away, Coo's seizures were no worse than had he been home and we've had some real, quality, time in lovely surroundings and are fully rested and ready to carry on and for that we are truly thankful!

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

That roller-coaster ride that's caring...

Hi guys, Coo's having a sore time of it today again.

He had a bad night and has been pretty much seizing on and off most of the day but we're hanging on in there so we're ok!

Being a Carer sure is a roller-coaster ride at times! No bike riding today even if the sun is out...we're house-bound for now anyways.

While He's been poorly, to pass the time I've been busy...crafting!
I checked in at my wee sewing machine and decided to at last get around to making Jessie's wee dress. It's from a pattern I found online and...todays the day! lol

So from pillowcase...

 

To Jessie dress...

 

Pretty cool eh!

I think wee dresses like this one will be great for the warm summer weather too, especially as Jessie will be in a Spica cast so loose and cool clothing will be the order of the day!

I hope Jessie and mummy like it as much as I do!

 

I like crafts, when times are tough, they kinda take you to a happier place for a wee while! If you've not caught the crafting bug give it a go - it sure works for me!

Happy crafting!

(((hugs)))

Maz x