Carers, COVID and keeping safe...

 Hi guys, we're still living quietly here, not isolating as such but being very tentative and really careful that's for sure!

There are very few places Coo and I now feel safe so we're mostly in Eglinton Park or at home these days. Don't get me wrong, over the years, we've been stuck at home for long periods of time before but this is different. Previously, we always had lot's of family popping in and out, running errands and staying for a chat or a cuppa most days.

This time, we were so worried over virus and infection as last time Coo had a bad infection things quickly escalated and he had a six month period with thirty seizures a day. It was an awful time neither of us want to repeat so we closed ranks and battened down the hatches to sit it out but this time, it was harder. I just didn't realise how much I need other people. 

I under estimated how hard it would be without the usual peer supports I've come to depend on. With family unable to visit and my Three Towns carer group, which has been up and running every two weeks for 15 years come rain or shine all gone, I've really struggled this time.

I've managed to keep in touch using Facebook or by phone but there's no real substitute for human contact and bonding over a wee cuppa and a chat is there!

I think we got hit with a bit of a double whammy, my Dad died one week and lockdown hit the next with it's enforced isolation and additional anxiety so we kinda became shut off from the outside world and just stayed home. Coo was poorly, he took my dad's death hard and his seizures spiked. He got anxious about infections and his seizures spiked, my rheumatoid flared and we got irritated at being shut in all the time and his seizures spiked...you getting the picture? Offt it was tough but we rode it out..kinda! I stopped all my meetings and took a time out. I didn't feel in the right head space to deal with other issues as we were kinda struggling dealing with our own. Gosh that sounds selfish and a bit of a pity party doesn't it! Our lives are still very cloistered and quiet but for our own sanity, we had to 'extend our household' and join with our daughters family, and our wee grand-babies or we'd otherwise have emotionally gone under. 

We eventually decided to start getting out tentatively. 

This week was wee Jessie's first Communion so we braved the church - I've been live streaming mass for months - everything was sanitised and distanced and different but we felt safe enough and we coped! 

It's my birthday today so we went out again, a favourite place up to The Dick Institute in Kilmarnock for a wee happy hour and again everything was sanitised and distanced so we both felt fine. It will take time to build back up confidence but we'll get there and as always we'll do it together!

In such difficult times, stay strong friends.

((hugs))

Maz x

Blogging, caring, surviving & SDS too

Hi guys, it's been a while since I've blogged, things have changed but I'm pretty much ok!
Things got complicated, I got ill, Coo stayed much the same and I took on more responsiblity with supporting my dad...phew!
Who carers for the carer?
Well, the short answer is usually nobody rushes in to pick up the care load when you - the carer - is ill and that is pretty much an awful position to be in - we've been there before and it's no fun that's for sure but this time it was different!

Our SDS (Self Directed Support) kicked in pretty much seamlessly, Looby came to stay for a few days while I recovered (I had a chest infection that didn't go and kicked off the rheumatoid issues!). What a difference it made to concentrate on getting better and not on worrying about just how we'd cope and I'd keep on caring for Coo. I just hope other carers give SDS a chance as when it works well, it can be life changingly good!
While things have been so busy and stressed these last few months, I've stayed in contact with my local carer group.

Honestly when it comes to finding support, local groups are really the first port of call. Willing to share information and friendship, they can be such a Godsend in times of struggle so if you haven't already, look one up and give them a go! What have you got to lose?


Coo's seizure activity is still, how shall I put it...challenging.

We recently found out he has some ongoing white cell and hemoglobin issues so yet more referrals, hospitals and hassles in store!
Main thing is we're alive and kicking, not giving up anytime soon and still smiling!
You keep strong and we'll both keep rolling with the punches!
((hugs)) Maz x

#CarersWeek Time outs and Troubles...

Hi guys, it's Carers Week!
So far I've managed a wee trip up to Glasgow Science Centre with my wee Three Towns Carers. They were so kind and offered us a fully supported trip! Woo hoo - result!
I've a historic walk planned for tomorrow around old Irvine's Harbour area which sounds good too so that's the fun bit...what's the troubles then?

All those balls, juggling again...

Well, I've already been at a meeting yesterday with our PPF (Patient Participation Forum) and I've another today - a follow-up one and I agreed to at the last minute! It's on shaping services for older people and complex needs and I've another stacked up for tomorrow with the Health & Social Care 'Performance and Audit'! All very valuable and all equally important and in theory do-able but and here's the rub...Coo has taken another tumble!
I should have saw it coming, his AED's (Anti Epilepsy Drugs) were too high in his system two weeks ago so he's had to reduce the dose. Now all seemed fine, well fine for Coo that is, around 10 seizures a night but last night's been a bit of a trial! He's seized every 20 minutes since two a.m. and...of all weeks, it would have to be this one - Carers Week, where I'm a bit stretched as it is!
Typical how Caring kinda gets in the way and just when you think you have it ticking along and manageable? Bang! Something happens to remind you again, just how fragile the balancing act all really is!

Aw well, it is what it is!
At least I have some support in place. Our SDS (Self Directed Support) Care Package, does ensure I have some sleep and additional respite care to at least enable me to function and continue mostly as planned so I will make my meetings and most of the fun stuff that's important too!
Gone are the days where it felt the whole world's cancelled and just staying home was the order of the day!
Now-a-days, Looby comes to keep Coo company and life goes on!

As for my own health hassles?  More bloods tomorrow! You gotta see the funny side...His 'n' Hers blood test appointments?!? That's a whole new area- even for us!lol
So the health hassles/self management? Still a work in progress but...I've parked them for this week! lol
Anyway, keep strong, I hope you have some support where you are and are managing to find some Carer week fun too!
(((hugs)))
Maz x

Events Review, Carena, #HSCP Engagement, Aids & Adapts...

Hi guys what a time of it we've had!
Ok, where to start! It's been busy that's for sure!

First up...
The Carena event at the Magnum Centre Irvine...
Coo was well enough to go and I thought he'd like it so...off we went! The plan was to be there around 10 o'clock but after a bad night seizure-wise it was nearer noon but we got there in the end!

So just how was it?
Busy! - over 130 stalls, from community and support groups to services and providers and all working in our own local area, who knew that many were out there all offering services and all basically just wanting to help!
This type of exhibition event is really valuable, especially for Carers as often people just don't know what is out there. Sometimes it's support from a wee local group that offers a few precious hours respite that is really all that's needed and is just enough to make caring easier and keep things going that little bit longer!

Next...
The HSCP - (Health & Social Care Partnership) Engagement Event at the Hallmark Hotel Irvine...

Firstly we were late! Coordinating half a dozen Carers from the three towns area over to Irvine was not as easy or as timely as it could have been! lol That said it was great! The members of the Three Towns Carers group who managed to get there (eventually) ranged in ages from early thirties to our Gwen at eighty-four years young! We've all been caring long term so you could say, there was a wealth of experiences to share and...share we did!

Between us we hit most of the work shops, if not all of them and we were pretty vocal on what we wanted from the partnership and just how we felt things should be!
Incidentally Carers have always wanted more joined up services where people and departments 'talk' to one another. Many is the time we have felt like that wee pinball bouncing around each and every way trying to find some help. It was never easy that's for sure! This new partnership way of working has the potential to be different, I guess we shall see!
Our Carers were well impressed with Jim and Annie's 'Fairer Scotland' workshop.
I guess, for most, with the best will in the world, finding yourself in a caring role full-time is not particularly fair! It kinda struck a chord and they really opened up about what is so unfair at the moment and their thoughts on how it could be so much better for Carers - once they started they didn't want to stop and that was just great!

Lastly...
Review of Aids and Adaptations services...
This was totally different!
An appreciative enquiry...Mmmm well, what can I say?
It was different that's for sure!
I'm more of a warts and all kinda person and like to hear a really balanced view both good practice and uplifting case studies but also I've found there's real value and balance in hearing where things have gone not so well and with Carers and services users around the table it could have been a great listening and learning experience for all, now that been said, it was still a worthwhile event!

People did share their experience and sometimes it is good to hear about where things are working well and services are delivering and helping people.
It's so important Carers and Service Users continue to be involved in every aspect of our services from planning and procurement to finance, provision and especially review! In most cases, we know what is working and how with a little bit of a tweak it could be made better too!

Health and Social Care affects and is for everyone - sometimes you just don't know that yet! An accident or illness is all it takes and then you need to find out pretty quickly just how good your local services are so if you get a chance to influence those who really can change things...grab it! I truly believe it's only by working together we can change things for the better for everyone!

Keep strong my friends as will I,
(((hugs)))
Maz x

Advisory Group, Carer Newspaper & 3T Carers ...

Hi guys, it's been a mixed bag kinda week...again!

Coo's been poorly again and we've mostly been home, although I did manage out to my meeting on Wednesday!
The Carers Advisory Group...

This is the group where Carers, local authority, NHS and third sector get around the table, discuss issues and look for solutions and a way forward - important stuff!

It's good Carers are now regarded as equal partners - well around here anyways!
Gone are the days where services were developed and delivered in a 'take it or leave it' approach, only Carers know what will truly work for them and it's never a one-size-fits-all kinda deal!
In recent years it's sure improved around here and lets hope it's improving elsewhere too!
The Carers Newspaper...

I've decide to highlight and post a link to the...
        Carer Newspaper.
Sometimes Wendy and the Chill 4 us Carers team include items from here and even if I'm not included - it's always a good read so...
Thank you Wendy!

Last but not least...The Three Towns Carers!

Even though things are not doing brilliantly here health-wise at the minute with Coo, thanks to our SDS (Self Directed Support) care package, I will still get out tomorrow and spend some time with other Carers. It's so important to have a wee time out, it may just seem like a cup of tea and a chat but it's so much more! In fact, it's vital for Carers to spend time together, share information, experience and advice and most important of all...have a laugh and for a wee while, turn off all the stress of caring. I'd be lost without them!
If you haven't already, dig up a local Carer group and give them a go, you may be pleasantly surprised at the warm welcome!
Stay strong
(((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

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

Busy, baton, travel and fun times...

Hi guys, where has the time gone! I just turned around and July was all gone!

Coo's seizures have been so problematic over the last month. We've been adjusting the meds, and just hanging on in there so it's been a bit difficult at times this month but....we've had some great moments too!
Where to start... ok!
The Baton...

The Queens Baton Relay finally made it to Ayrshire and a good time was had by all! How exciting the whole day was! All the expectation and excitement was worth it - I had a wonderful time! The town was so busy and everyone was cheering me on, I guess there was a real feel-good factor all around and it was just so brilliant to be part of it all!
Next...
A lovely celebration for all our baton bearers and their guests. We had four Carers from our group who were carrying the Baton so we decided to take another four of our Three Towns Carers as our guests. This meant eight Carers got a wee night out and dinner with Provost Joan and I'm glad we did it this way as Carers seldom get the chance for a fancy night out with free dinner thrown in too! Everyone enjoyed it so...Result! lol

Germany...
Our nephew Craig, lives in Germany and we made it all the way to his wedding - woo hoo!
Bearing in mind Coo's current erratic seizure activity and the stresses with changes in routine, it was no easy feat, it took a lot of planning and a great deal of organising but we made it! Previously we would have had to regretfully declined his invitation and stay home but the flexibility of our SDS (Self Directed Support) Care package, gave me belief that maybe, just maybe, with careful planning and support, we could do this - and we did! Oh I'm so glad we did, it was so wonderful!

So, just how did we manage it all?
Ok, Lobby was always coming with us - we would never have coped on such a trip without support so with her along it all seemed manageable!
A hotel was out of the question - Coo's seizure activity is so noisy and aggressive at the moment, it would just not have worked being in a small hotel room with other guests disturbed either side so we opted for an apartment with a lovely German family on the doorstep to lend a hand with language, directions and local information etc. - sorted!
The wedding was over two hours from the nearest airport and if we wanted to do some sight-seeing too, we'd need a driver - we asked our son in law Stevie to come along and drive for us - sorted!
We struck gold with our choices the apartment was very large and secure and just what we needed for a base for both the wedding and to allow a little touring too! woo hoo

Flights...
We found the most cost effective and easiest route for flights and just hoped for the best, everything would work out - best laid plans and all...we got delayed...for hours and hours but at least with all the support around we managed to take turns keeping Coo occupied and calm...mostly! There were some hairy moments but we coped! lol
The wedding was the main reason we went to Germany and it was a wonderful day and here we all are - check out the guys in their kilts! I'm so glad we got to go!

We even managed a boat-trip on the Rhine and a ride in a cable-car high up to a Castle too!
What a wonderful time we had!
I'm so grateful for the SDS package that made such a wonderful trip possible - we would not have managed alone, we just could not and would not have gone at all and that's such a shame! The flexibility and positivity that SDS has brought us is beyond price, it's given us a can-do attitude and opened up so many wonderful possibilities. Previously, so many doors were closed for Coo and I and SDS has changed that, in fact it's changed us too!

When SDS comes your way, please don't be afraid of the change - reach out with both hands and grab it!
(((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

Carers and the Commonwealth Games...

Hi guys, I've had some news. Good news...in fact...great news!

It's been a really busy and successful period recently for our local Carers!
First there was the launch of CareNA our local community portal, that went on to win the COSLA Gold Award!
Next, 'The Three Towns Carers' won the Provost Civic Award for a Community Group - wee recap here...

So just what has happened now?

Four members of our Group (The Three Towns Carers), have been selected as Queens Relay Baton-bearers for this years Commonwealth Games in Glasgow - We'll bear the Queen's Baton (for a wee while!) as it travels on it's journey throughout North Ayrshire!

Quote: The Glasgow 2014 Queen's Baton Relay will travel 190,000 km in 288 days and...four Carers from our wee group will be there doing their bit too!
Now, just how cool is that?
...we're tickled pink at the prospect!

There are lots of Carers out there, who still need help, support and friendship. We entered these events to raise the profile of 'Carers' in general and our wee group too and hopefully find some of those hidden Carers in our area.

I'm so excited about this latest development - can you tell? lol
I'll update as more news comes our way!
(((hugs)))
Maz x

Update: Coo's foot & The Carers Advisory Group...

Hi guys, it's been a bit of  a mixed bag here this week, both busy and quiet at home time too!

Coo's foot...

Well, it's still broken - no surprises there!
I'm getting a bit concerned though as it's not much better! The problem is, he can't rest it up any as every time he has a seizure, his foot gets jerked around again and it's not getting a chance to heal!
I've decided to contact our GP for some advice and just see if anything can be done to help the healing process along, I'm not sure what if anything can be done but...I guess we will see!

Carers Advisory Group...
I've been out again with my Local Authority this week as part of their new Carers Advisory Group. I decided to be involved with this group as their new 'Carers Strategy' is a good document.
The Strategy has the potential to make things a whole lot better for Carers in our area and I really feel the best way to ensure the policy is delivered is for experienced Carers to be involved from the off and it was a successful meeting!

Questions raised by my own Carers group (The Three Towns Carers), were submitted prior to the meeting, made it onto the agenda and were discussed on the day. - result!

I honestly feel, only by working together, can we truly improve things for Carers and the people they care for and I'm pleased to report the Carers Advisory Group has made a good start!
It's good for Carers to work with and influence policy where they can, especially if by doing so they can help other Carers along the way!

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

We won...twice!

Hi guys, it's been a golden week this week!

CareNA...
Brilliant news - our community portal did win the COSLA (Convention of Scottish Local Authorities), Gold Award!

I'm so glad it won!
It's a brilliant resource for Carers and disabled people in our area and as it grows and populates it will only get bigger and better so...job's a good un!


In other news...

The North Ayrshire Provost Civic Awards...
Remember I blogged about my wee Carer group - The Three Towns Carers being up for the Provost Civic Pride Award? Well...we won! Just how cool is that! Sometimes Carers hard work and dedication to a loved one, is forgotten but this time we were remembered!

Here we are with the other winners...

Check out Liz and I on the bottom right, in our posh frocks and by sheer chance, we were colour co-ordinated too! lol

It was a wonderful evening,  a real happy experience and best of all the Carers won!
We're getting a cake for our next meeting so all our Carers can celebrate over a wee cuppa!

After the big night out and posh frock wearing, it was back to reality pretty quick - Coo was really poorly and the seizures were coming thick and fast.
The highs and lows of caring, it sure is a bit of a roller coaster ride! One minute posh frocks and out for dinner with the Provost and the next...jammies, seizures and struggles - we coped and we live to fight another day!

so...all-in-all, it was a bit of a bumpy weekend but...what a great week! Sure was fun!
Stay strong guys!
(((hugs)))
Maz x