Stay isolated? Covid the disability Carer dilemma...

Hi guys, things seem to be moving forward in dealing with Covid 19. Cafe's, pubs and some hospitality areas are open now and folk can carefully go out again or so it seems but it's very scary for those who've been shielded away for so long! 

Going out? is it safe? Questions, questions?

With every news report and update, more hot spots and pockets of infection are reported and it feels like one step forwards and another step back so...we're still isolating...mostly! We've been out in the car a few times had a wee cuppa  - it's like the old days of childhood, take a picnic and a cuppa and enjoy the peace and quiet but now it feels so different. It's not by choice, it's to ensure as minimal contact as possible with the outside world! I'm not sure I like this new way of living but Coo is still terrified of infection after the hell of aspiration pneumonia that left him with a COPD and asthma legacy and that's hard to get past especially as other places begin to lockdown again!

Changes...

Life has changed, especially for Carers and disabled people. Let's face it everyone is worried, factor in additional health conditions, life limiting issues and daily updates and stats on a deadly virus - it was never going to be easy for us was it but what to do? Continue to role with the punches, pick up the pieces and carry on - it's what carers have always done isn't it?

I'm coping mostly! Life is a challenge and we just muddle along through and find a way. Granted this time, the Covid virus has had a prolonged impact and still continues to cast it's shadow so it's been particularly difficult to sustain some positivity but we're still here and we're still going. Just like millions of other carers across our country, thankfully we're a hardy bunch!

School's returning...

Lot's of folks will be celebrating some form of normality returning as schools open up but my heart is filled with dread. After the prolonged period of enforced seclusion, we just got used to hugging our grand-babies again and I'm now dreading another prolonged isolation from them, whilst we wait and see if infection spikes or is it safe enough to continue contact? 

Spending some time with our wee grand babies over the last month has kept me sane and still connected to life and the outside world. I'm going to struggle to relinquish this again. I really hope I won't be back relegated to my seat on the drive, looking through the window. I know how awful that is, living life stuck inside with just glimpses of the busy world going on outside but it passed and this will too!

I really feel for carers who are struggling on alone at the moment. I remember just how difficult that was and hope and pray, things will start to improve for us all soon.

((hugs))

Maz x

Caring magazine and us...

Hi guys just incase you missed it last time around...
I thought I'd share our big interview!
We were asked by Caring Magazine  - well I was, Coo just came along for the ride! lol
 Caring Magazine issue 46

It was originally going to be a wee piece about North Ayrshire's brilliant 'Carers Appreciation card'  and it is but it kinda took arms and legs and ended up covering a whole lot more and a few pages long...we're on pages 4 - 7 and with some happy pics included too!

SDS (Self directed support) has made such a difference for us, it helped open doors that were previously tightly closed. Time for respite both together and some time apart, time out for training and even time just to sleep and turn off from caring for just a little while, knowing things will be ok.

Help for carers is out there!
It's just knowing where to find and ultimately access it that's the tricky bit and by pushing and sharing information, we can all try and get a better deal for carers!
Keep strong friends as will I!
((Hugs))
Maz x

Carers, Self Directed Support, Parliament and 'the bucket man'

Hi guys I've not blogged much recently.
My fingers still hurt pretty badly with the rheumatoid issues and I've not found software that works for me - I guess they software companies haven't mastered understanding the Scottish west coast dialect...yet! lol
So just what's been happening? 

Well, Coo took a bit of a tumble last month, he had some major seizure activity, his blood drug levels were off the scale again and in the end a chest infection was to blame!
We dug out the hard hats and flak jackets, waited out the storm and just hung on in there and after a week back in anti-bio-land, things slowly improved...yeah, he's back on the up and it was just in time!

The Hydro and the Bucket man...
Thanks to our SDS (Self Directed Support) care package, Coo and I managed to cross something big off our bucket list! We were so excited about this one and it couldn't have come at a better time! We had both been so poorly recently and it was a bit touch and go but there was no way we were gonna miss the chance to see Jean Michel Jarre on his one night only spectacular show at the Hydro in Glasgow (bet he's not been called a bucket man before!
What a night! What music! What a show!
We had an awesome time! Can you tell? Ok, we had to take things easy, plan and prepare and build in some rest times too but we did it! woo hoo!
Care & Support North Ayrshire

 SDS is so brilliant! When it works, it works really well and has the potential to transform lives. Things that previously were just not possible and seemed far out of reach become that much more achievable and can make lives meaningful again - it can truly be the difference between existing and living!

So just how else does SDS support both Carer and people with disabilities? 
Well, on to my wee jaunt up to Edinburgh for the Carers Parliament, our SDS funding covers the cost of replacement care and effectively frees me up to go and do things that are important to and for me!

Like speaking at the Carers Parliament, presenting at a conference and joining with others at Carers Scotland or even a wee day away on my own for a bit of respite and if it's possible to make sure our Carer voices are heard too...then job's a good 'un!

I truly believe it's only by really working together we can ever get things right for Carers and Self Directed Support is only the first step but it can be a big leap in the right direction!
(((hugs)))
Maz x

Carer and Cared for Roller-coaster ride, Royal adventures too...

Hi guys it's been a busy month since I last blogged and there's been some real highs and lows...
It's a bit like that Carer roller-coaster ride again...
Me...
My own health is still problematic at best, thank God we have our SDS - (Self Directed Support) budget in place! I've been using it for additional care hours to keep us ticking along while things are so unsettled and it seems at the moment I've more appointments than Coo and that's a big shift around for us!
Okay, the Rheumatoid Arthritis is a little bit better, well the swelling is still going down but the pain is still pretty much on the high side and I've developed some nasty side effects from the drugs so...things are changing again.
I'm moving from tablets to injections and I'm not quite sure how I feel about that and...to cap it all our beloved GP is retiring soon.
God knows how I feel about that too - he's got us through numerous medical muddles over the last twenty-five years and with a hug and a smile too!

I know there are other good doctors in our practice and we will be fine but we will miss him so much, I'm tearing up just thinking about it all!


Coo...
Meanwhile, Coo's taken a bit of a battering too this month, his drug level spiked way out the safe zone and things were dire back up around 20 odd seizures a night and totally shattered and struggling all the time. AEDs (Anti Epilepsy Drugs) reduced a little...effect? A lot! Things quickly spun out of control again and we were in a real struggle we couldn't find the middle ground - time for the Neuro!
He's a cool guy, very patient, listens to Coo and sorts a plan of action - we're still in the middle of this latest AED see-saw but I'm hopeful we're coming back on the up!

They've been pretty low points this month so time for a high point...
We've been Travelodge-ing it again! lol
We were invited to the Queen's Garden Party in Edinburgh last week so we were Edinburgh bound for a few days and here we both are at Holyrood Palace...

It was a bit touch and go, if we'd make it and a bit of a struggle getting things all sorted but we did and we had such a lovely time.
The rain stayed off, the food was tasty and the whole setting was stunning!
We managed a wee visit to Gladstone's Land on the Royal Mile and The Georgian House too - in fact we had a brilliant wee break away in our Capital City - I'm so glad we got to go as it's given us both a bit of a lift!

Stay strong friends, let's hope for some more settled times too!
(((hugs)))
Maz x

Wee 3T Carers Respite day...

Hi guys I've been off out on a Respite day with my wee group!

Three Towns Carers...
Around six years ago our Carer group began. We are now a wee family of eighteen, who share and support one another through out the troubles and triumphs caring brings.

We offer support, friendship and extend a wee helping hand to Carers in our area and that can make all the difference in the world! I'm so very glad I found them!
We operate on a financial shoe-string using 'Tea money' and a little assistance from our local authority for which we are so very grateful! This wee bit funding makes it possible for us to access a much needed time-out and a little fun spent with other Carers too!
Respite...
Yesterday was one-such day!
Fifteen of us set off (in the council mini-bus!) for a wee day out to Dean Castle and Country Park in Kilmarnock and what a day we had! From Castles and gardens, Llama's and Donkey's to pigs - both pot bellied and guinea ones!- we saw the lot and had a fantastic day in the process!
It rained too but it didn't dampen our spirits!

 I like to live life by this principle...
 It's not about waiting for the rain to stop, it's about dancing in the puddles! 

Here I am doing exactly that!

It's thanks to our SDS (Self Directed Support) that I can access days like this at all. There were times in the past it was all just to difficult and stressful and in the end it was easier to say 'I can't come' and just stay home but not anymore! SDS has opened so many doors for both Coo and I, we can arrange time-out to do something together or like yesterday, I can sort care and get out and have some time to myself too - what a luxury! 

I know this isn't the case for all Carers, too many still struggle on alone year-on-year as I did and I'm so grateful for the support and changes SDS has brought us, I sincerely hope other Carers find the support they need too.

So inspiring I wanted to share...

This is from the circular memorial stone in Dean Park Kilmarnock and I thought it so apt for our Carers too - especially as we were on our grand day out!

Stay strong my friends as will I!
(((hugs)))
Maz x

Respite, SDS, Carer Roller-coasters, hard hats and keeping well...

Hi guys, it's been a bit of a roller-coaster week here!
You know the kind - up and down and kinda difficult to catch your breath kinda week!

On the up side...
Thanks to our SDS (Self Directed Support), Coo and I managed a respite night away at the theatre in Glasgow! woo hoo!
We went to... Dirty Rotten Scoundrels!

What a great show! It was booked ages ago and yet again, it was a bit touch-and-go if we'd make it as Coo's been real poorly but he rallied around on Monday and still wanted to go and...I'm so glad we did! He kept well pretty much, while we were away and we both so enjoyed it all so...result! lol
I guess a change is as good as a rest right enough! lol

Now for the down side...

The life of a Carer sure is a roller-coaster ride at times, a lovely night away, a giggle eating ice-cream in the theatre and then back to earth with a bump!
Coo's seizures have worsened, he's so very tired and tetchy shall we say! We're ok, I've dug out my hard hat and we'll get his bloods done, sit it out for a bit and just see what happens...again!

Keeping well...
I'm glad I completed that 'Mindfulness' training TACT - (The Ayrshire Community Trust) recently offered free - it's come in handy over the last few weeks.

I didn't think I needed this training as I'm usually kinda upbeat about things in general and cope pretty well but it's taught me to care a little more about me too and be a little kinder to myself and I guess that's a good thing to learn!

I bet a lot of Carers could really use 'Mindfulness' training too!

Stay strong friends and be 'mindful'
(((hugs)))
Maz x

Carers Week, Cycling, Spamalot and Sunshine...

Hi guys summer has at last arrived and...just in time for Carers Week too!

It's been a busy few weeks!

Respite...
Coo and I managed a wee overnight respite break up to Glasgow to the Kings. Coo's a great big Python fan so off we went to see... Spamalot!
It was great fun! Loads of laughs and even an impromptu theatre evacuation half way through! lol

After the fire brigade arrived and gave the all clear, we piled back in and...it was on with the show!
All-in-all we had a grand Glasgow adventure!

Next up...Carers Week!

Carers Week last year, saw me saying how enjoyable I found the nail painting session -is it really a whole year? It must be as Carers Week is yet again upon us!
This time around it's been a bit quieter, no laughter yoga or trips out this year but I did manage to get my nails done and a wee lunch at the local Carers Centre and our wee group managed to raise awareness of Carer issues at a local fete too so we've done ok!

Sunshine and cycling...

What a blast! The sun has decided to visit at last and...with Coo feeling on the up this week too, we got out on our bikes again! woo hoo! Such a great way to spend a lovely day whizzing about on the cycle tracks and what a great end to our week too!

I've loved it this week. Fresh air and sunshine and both well enough it enjoy it all! We've had a great week and we're doing good - I hope you're good where you are too!
(((hugs)))
Maz x

On the up, pain probs and bike rides too...

Hi guys, Hope you're well,
We've been taking it a wee bit easier this week and I guess it's been a mixture of the post holiday blues and my own pain levels this time around but on the plus side -  Coo's back on the up and...thank goodness for that! lol

My own health issues have continued. 
I'm ok but I've had some news on that front.

 It seems, all the issues at Christmas are stemming from a neck problem...who knew?
It looks like I have degenerative discs, nerve damage and neuropathic pain so pain meds and physio seem to be in order.
I'm not finding this new development at all easy - Turns out I'm a rubbish patient! I have all the patience in the world for Coo when he's poorly but markedly less so for myself, I just keep pushing myself a bit too far, I wonder if that's a Carer failing in general? Anyways, I started the pain meds a couple of weeks ago and this week, thankfully, they are working!

All in all, with Coo back on the up and my pain levels down (what a see-saw!), things have been pretty positive here this week!
The weather improved the other day too, the sun even came out and we managed a bike ride...woo hoo!
What a wheeze it was too! It's so good getting back out in the fresh air for a wee while, the feeling of freedom is really quite addictive - something that feels this much fun, shouldn't be good for you! lol

The first time out this season and we were both pretty much fine afterwards so...jobs a good 'un! lol

If you get the chance, give cycling a go, it sure is fun!

Remember to take care of you!
(((hugs)))
Maz x

Busy week Carers, Welfare Reform, Anniversary and PPF...

Hi guys yet again it's been a busy week!

Coo's just Coo - seizures and sleepy but still strumming happily along - he's been back on his guitar this week so things are surely on the up!
I've been out and about again!
PPF -  (NHS Patient Participation Forum)
On Tuesday I met a new group, our local PPF - well, it's not really a new group, I've been involved with them online for years but this week I met up with them face to face!
It was interesting and informative and as always, the real value is in sharing information and experiences. I really felt it was worthwhile being involved  - it's important people have a voice and raise issues and challenge where necessary.
Welfare Reform -
The latest Welfare Reform session for the Scottish Government conducted with researchers from Napier University went well. Sometimes it can be difficult sharing information, it's not always easy to open the box and examine things fully.

Health difficulties, disabilities and the current changes and challenges in our welfare system have brought their own brand of stresses for many disabled people and Carers and Coo and I are no exception!
It's really why I agreed to be involved with this three year project in the first place! It's important! I truly feel the research collected, will properly document just what did happened to the most vulnerable people in our society during one of the most turbulent and divisive periods in recent times and...I for one, want a proper record, taken from ordinary people and in their own words, accurately recorded!
We must all stand together and speak out strongly, whenever and wherever we can!
Happy news this week too...

It was our wedding anniversary this week. Thirty-one years - just where does the time go? lol
The weather was fine and bright so we decided to hop on a ferry to Arran...
It's a wonderful place for a visit and at any time of year! From museums, hill walking, cheese tasting and whisky distilling it's got the lot!
Just like Wallace and Gromit...we had a grand day out!
We sure had fun this week, I hope you have a wee bit fun too!
(((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

A wee Swim a smile and a time-out...

Hi guys, I'm feeling more like my sunny self today!

Coo had a more settled night with six seizures and was up and around early too so...

we decided to take our grand-daughter Jessie swimming!
Well, I went swimming with Jessie and Coo had a wee cuppa and watched us splash about!
It was fun, a wee change and a pleasant wee hour out for Coo too and it has lifted my spirits back up again so....result!

All's well in our world for now!
Hope you're having a wee time-out where you are too!
(((hugs)))
Maz

Respite, SDS and shop till you drop!

Hi guys I've had a wee time out this week!

I've been off on Respite for a few days and at my usual place...Blackpool!

I like Blackpool, it's fun and cheerful and if the weather is kind too, it's a brilliant holiday spot!
The Queen's is a lovely hotel. It's right on the prom too and the beds are comfy, the food is great and the Jacuzzi is toasty warm! lol
so...mum and I shopped till we dropped, had all number of cake eating and tea drinking sessions and generally had a...ball! Speaking of which, did you know Blackpool has the biggest glitter ball in the world? Well, they do and here it is... ta-da!

You sure need you're shades on when the sunshine catches a hold of it! lol
It's so cool though!
When we were there, the little ones were running around, chasing the reflected light - in fact everyone was having a ball! lol

Thanks to our SDS (Self Directed Support), while I was away, things at home, managed along just fine without me. Looby came to stay with Coo and keep him safe and this meant, I had a real break, with time to switch off and just go with the flow for a bit! I think that's what Carers miss the most, the spontaneity of life, being able to just get up and go and not need to plan all the contingencies and deal with the 'what if's' that come alongside disabilities and caring in general!

That's why I feel so strongly about the need for regular Respite breaks for all Carers!
It's oh so very important!

Unless you've lived this lifestyle you can only imagine the release of pressure that comes from proper Respite!
It's the difference between drowning in darkness and finding a safe harbour for a wee while!
I'm so very fortunate to have support and having been there myself, I know it's so very different for lots of other Carers still struggling on alone and it's just not good enough!

I hope the time comes where we all have the support we need!
Keep strong my friends,
(((hugs)))
Maz x

Appointments and time outs...

Hi guys, it's been another busy week, what with appointments, paperwork and just getting organised!

Ok appointment 1...

Coo's bloods are still problematic and he has an increase in seizures too so he's having more bloods done again this week. He just can't seem to catch a break at the moment. We're going to wait for the blood results and then... we'll regroup and decide just what to do. - we're coping and that's the main thing!

Appointment 2...Good news!

Remember my post about my Shonky eyeball from last year? - here's a reminder!  Well, I've been visiting hospital for the last year and now the results are in! No treatment required - woo hoo!  Turns out I have a tilted optic disc, it's been checked and it's nothing to worry about so...result!

I've one more appointment to go...and it's a good one! lol
I'm off tomorrow for a wee time-out and with other Carers too!
We're going on a visit to  'The Ayr Flower Show'

I've never been there before and it looks great and best of all? I'll be able to have a laugh and a fun time out with other Carers at a wee change of pace!
Thank you SDS (Self Directed Support) - Regardless of how things are, tomorrow, Looby will come keep Coo company and I'll get to poke around the flower show and most probably indulge in some plant buying! lol

I'm hoping for some sunshine and if not, well, there's always the wellie boots! lol

I'm faring ok here and I hope you're doing ok too!
(((hugs)))
Maz x

Mixed bag day...

Hi guys, things have been up and down again here!

We struggled again as Coo was really poorly overnight and it took quite a while to get going this morning but we rallied around and in the end...we were great!
Coo's wanted to go for a bike ride for months now. (If truth be told, I felt a little guilty out on my Carers cycle day last week as I knew Coo would have loved it and was so desperate to get out too!).

He's struggled so recently, that it's just not been possible but with things settling over the last few days, we made plans to get the bikes out this morning! woo hoo!

After the poor night,
I thought the bike ride would be off but...no!
By lunch time Coo felt better and wanted to go! Ok we had to compromise and didn't go very far but it was out! and it was fun! Weeee!
He's been sleepy and poorly since we came back but we're both glad we went, nothing beats feeling the sunshine on your face and the freshness of the wind blowing you along on your bike! It was just good fun and passed a pleasant wee hour!
I guess it's still one day at a time here and that's ok too, good days and happy times are so prized in fact, I think they're a bit of a blessing really.

If you get the chance to try out a wee bike ride - go for it! Something that much fun, shouldn't be good for you...but it is!
It's a win-win kind of a deal!


I'm glad we had such a good day today, tomorrow's D-Day for the Spirometry test. I'm staying positive and sending happy thoughts and a wee smile your way,
Stay strong as will I!
(((hugs)))
Maz x

Carers and Sunshiney days...

Hi guys and...Happy Easter!
Hope you got...a chocolate egg, a wee plant or a present with a big bow or...whatever your passion is! lol
I'm so pleased as it's been a sunshine-y day - in fact it's been a sunshine-y weekend...woo hoo!

I love it, I've been pottering around in the garden and planting stuff! lol
Everything always seems that little bit brighter and easier when the sun pays a visit, don't you think? I honestly feel grey days make for greyer moods too so I'm enjoying the wee bit brightness while it lasts.

I managed to get out today!
A wee while with my wee Carer group. There's usually between twelve and fifteen of us and it really is a great support.

We're all Carers and at varying stages of our Carer journey, some (like me!), have been caring for many years, some are still new and things are raw and confusing and some are struggling with the loss of a loved one or the daunting prospect of residential care decisions on the horizon.
All so very different but all with a common bond - Caring!
I guess you can see why I feel so strongly about the benefits of good community groups. They are so very important and can be vital, especially for Carers. I'd be so very lost without the other Three Towns Carers now - we're a wee family of sorts! lol

If you are caring and struggling along on your own, reach out, try and find a wee local group - we are out there - honestly!
(((hugs)))
Maz x

Caring, Harping, Strategies & ATOS...

Hi guys, after all the rushing about last week, it's been so quiet here the last few days!

Coo's been poorly again so we've been mostly at home and after all the busy-ness of last week that's probably not a bad thing and it's given me time to catch my breath, regroup and chill for a bit! I did manage to get out to my wee Carer meeting on Monday though!
 Looby came to keep Coo company and I headed out for a wee chat and a cuppa with my 3 Towns Carers.
It's always good to spend time with other Carers no matter how tired you are!
It gives me a wee bit of a boost being with others who know how it really is, they don't judge but they do offer solutions and a bit of laugh along the way too!

While I've been home, I've taken some time out harping!
I tend to reach for my harp when I'm feeling a bit tired or even a bit over-whelmed and need a wee boost and it usually does the trick!
I  love music and I think it's therapeutic but who knows, all I can say is...it sure works for me!

Carers Advisory Group...

I'm busy with a new group later this week.
It's with my Local Authority, NHS and other partners and I agreed to be part of this one as their Carer Strategy is a good one and I really feel having experienced Carers involved from the off, is the best way to ensure everything offered in the new Strategy is actually delivered!

ATOS...

With Coo being poorly, sadly, I didn't make it up to Glasgow this week for the latest Demo. against ATOS Healthcare.
This company has cost us (and many other families with disabilities!) many a sleepless night! We stressed majorly over their fiasco surrounding Coo's on and off need to travel for assessment with them. One minute he was to go and another it was not necessary, they just couldn't make their mind up. In the end it got sorted but not without a lot of stress, worry and anxiety and those are words this company seems to generate on a national scale!

I've met news that ATOS want an early exit from their  DWP work capability assessments contract, with mixed emotions. 
Who knows, maybe another company will do better but let's be clear ATOS are not the only ones to blame for this fiasco - DWP's flawed policy is the real villain of the piece and I'm afraid that battle is very far from over!

We live to fight another day!
Stay strong my friends,
(((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

Christmas, SDS, Respite & Time out....

Hi guys and...Happy Christmas!

We've had a lovely time and this year, we successfully avoided the A & E dept. at the local hospital too so... Result! lol
We even managed to take a Respite break, a wee Christmas time-out up to Edinburgh for a few days! Woo hoo
Coo get's very stressed at Christmas. He really struggles with all the hustle and bustle so if we can, I try to break up the Christmas period with a few days away and Edinburgh is so lovely this time of year isn't it!
The whole place was wintery and beautiful. All twinkly and Christmassy and really, just a fun place to spend a wee few days away from all the busy Christmas shopping frenzy!

While away on Respite, we never shop!
I don't think we were in a shop from we left until we came back home! lol I guess that's kinda why we like Edinburgh, there's so much to see and do especially if like us you want to avoid the Christmas shopping and panic buying side of things!
We stayed in the Travelodge in Rose Street - Coo's comfortable visiting there and it's central too so it's a good choice for us. We visited the Christmas Markets in Princes gardens and sipped hot chocolate under the stars mmm! It's such a lovely place to have a wander and just soak up the atmosphere and enjoy all the pretty things all around - love it!

Next up, we visited the... National Museum and we had such a brilliant time!

There's loads to see and do, from stars and space stuff, to natural science and gadgets, it's got the lot and it's all free! How cool is that?
Check me out star gazing - it sure was fun! lol

 We ended our Edinburgh adventure with a visit to the Lyceum Theatre for a wee bit of culture and a sprinkling of Christmas Spirit and feel good factor - we went to see Dickens' 'A Christmas Carol' and it was wonderful! Songs, music, a lovely Christmassy story and...snowflakes all around us - it was totally awesome!

We're so grateful to our Local Authority for their support and the SDS (Self Directed Support) funding, which makes much needed, regular, respite breaks like this one possible.

We have both benefited tremendously and are so very impressed with this new way of providing care and support for not only Coo as a disabled person but for both of us!

Our quality of life is so much better.
In difficult times, just knowing funding for Care and Respite is there when we need it makes things a lot less stressful and so much easier to manage.
SDS has made such a positive difference for Coo and I that my Christmas wish is, a hope for all Carers to get the chance to try SDS out for themselves.

Keep strong and take care of you!
(((hugs)))
Maz x

From Panto to Power of Attorney...

Hi guys, it's always a bit of a roller-coaster ride and none more so than this week!
Yesterday, my wee Carers Group had a Christmas Pantomime date! Oh yes we did!

This year it was...
Jack and the Beanstalk!
Christmas can be a difficult time for Carers as most times, there's little in the way of respite or holidays to speak of and sometimes thoughts crowd in and it can become a very quiet and isolated time too. There are 18 Carers in our group and we decided around five years ago, we would always try to make it to a panto at this time of year.
One wee fun-time out together, just to forget the worries of caring and have a laugh and a wee release for a few short hours.
A really happy time with lot's of laughter all around! In the words of Wallace and Gromit...it was a grand day out! lol

Onto the Power of Attorney...
Remember I posted about Carers Rights Day and our local Carers Centre having a lawyer on hand for free advice? and that I'd spoke to her about setting up POA (Power of Attorney) Well, today was the day! We had a visit at home, discussed all the information and decided to progress this now. It will be important, especially the welfare side of things should Coo become incapacitated and need some help deciding on medical care - wish we'd had this in place last time as I'm sure it would have made things a whole lot easier!
Anyways, we are sorting it out now!
We've taken the first step, which is to apply for Legal Aid.

I'll let you know how things go as I think most Carers and disabled people, would probably be better off with 'Power of Attorney' in place- especially the welfare side of it! I guess it'll be interesting to see how easily (or not!) this process turns out to be, so I'll keep an update going as it progresses just in case other Carers are thinking of setting up POA too.

The life of a Carer sure is a roller-coaster right enough! I've gone from laughs to Legal in one day! lol

 I hope you get a wee time out or even a wee giggle too this week!
Stay strong
(((hugs)))
Maz x