My Carer poems...

Hi guys, with time spent at home again, I've been in a reflective mood and...with Carers Week upon us, I dug around the blog for my Carer poems....here!

Having just received the report from the 'Carers' Parliament 2013' through the post, I've settled on this one, it's the one I wrote and delivered at the first Carers Rally in Edinburgh over five years ago - I can't believe it's been that long!
Check me out in the fetching 'Tartan and high-vis' vest! lol

‘Just a little Peace’

We don’t need any help, we’re managing fine,
Pile it on…pile it on…never look for a sign.
Carers work on with not much of a break,
They continue to care for a loved ones sake.

As the caring goes on and the load does increase,
God send us some respite, just a little peace.
Some time to go walking, kicking leaves in the park,
even just sleeping when everything’s dark.
The caring continues deep into the night,
we struggle and strive and continue to fight.
For help it is out there or so we are told,
but trying to find it...you need to be bold.

Some time for a break, to do something new.
Maybe just sit still and take time for you.
Reading a book or watching a show,
Finish something, not having to go.
As the caring goes on and the load does increase,
God send us some respite, just a little peace.

It’s not easy to spot us, we look just like you.
Carers are working and constantly too.
When others go home at the end of the day,
We still keep on working, minus the pay.
Please listen now, it’s so easy to find,
Yourself as a Carer and stuck in this bind.
Nobody knows how, it just happens unplanned,
as quick as that jar with the small grains of sand.

Heed what we say as we carry on,
caring and struggling way past the dawn.
we know lots of Carers who live in this way,
it’s not what they asked for, this role that they play.

Some time to themselves it’s not much to expect.
It’s down to government and Scottish Exec.
Some help with this task that never seems to cease.
as caring goes on and the load does so increase,
please send them some respite and just a little peace…

It still kinda covers all that I want to say. We've a long way still to go!
Keep strong my friends,
(((hugs)))
Maz

Back in antibio-land,SDS & Carers Week...

Hi guys, we're struggling this week and we're back in anti-bio-land...again!

Coo's chest infection has returned. With a wheeze like an old horse and phlegm and the dreaded increase in seizures, I kinda guessed as much - so he's on the antibiotics for another run!

We'll be living quietly this week and hoping things quickly improve as it's 'Carers Week' next week!
It's a busy week!
Previously, at this time of year, a bout of really poor health with Coo, would have had a devastating impact. All my plans and respite time, days out I'd so looked forward to and doing things that are good for me, would have all been cancelled as I'd have to stay home.

Fast forward to today and it's a different story all together!
Our SDS (Self Directed Support) care package, gives me the control, flexibility and the freedom really, to just manage to get out, to do the things that are important to me and just to live really!
What a positive change!
I know not all Carers are as well supported! Too many still struggle on alone with little real help or respite, in what is a very difficult and challenging path and that's why Carers week is so important!

Please support Carers Week, if you see Carer items in the news on the telly or even on your high street, spare a kind thought for all those Carers just doing the best they can for a loved one!
(((hugs)))
Maz x

Busy times, SIB, Carers voices being heard...

Hi guys, it's been a busy few days - I've been out with my Local Authority again!

Here in Scotland, NHS and Social Care are merging and I was asked to be involved with the Shadow Integration Board.

Now, you will know exactly how I feel about Carers voices being heard and just how important it is to influence those with the real power to positively change things for Carers so...of course I said yes!
I'm now the Carer member of the... 'Shadow Integration Board for Health and Social Care' for North Ayrshire.

My first 'SIB' event on Wednesday...
The event was busy and it was a fairly high profile group, mostly, if not all professionals working within NHS, Local Authority and third sector organisations and when we broke into working groups, I was the only lay person in our group.
Sometimes this type of meeting can be a little bit intimidating but I just remember why I have been selected and just why I have a place on the board - I'm a Carer and my experience of both 'caring' and navigating the 'Health and Social Care' system is really valuable! The experience and knowledge I have gained and shared with other Carers, is pertinent in us all finding a better way, a better deal if you like, especially for Carers. That can only be achieved by working together, with Carers placed right at the heart of policy and decision making and with places on the board...now that is valuable!

I spoke out strongly for Carers, shared experiences, issues and ideas and any doubts about why I was there were quickly dispelled! Carers need to be there!

All-in-all it was a very productive meeting - I'm glad I agreed to be involved  and I hope the other local Authorities and NHS Trusts involve Carers at the decision making process too!
I honestly feel, it's only by truly listening and working together, we can build a better service for everyone!
Stay strong and speak out wherever you can!
(((hugs)))
Maz x

Shared Colds, Sleep and SDS...

Hi guys, it's a Caring sharing kinda thing - Coo shared his cold with me! Cheers!

What a time, it's been!
Thankfully, Coo began to improve before I came down with it and that made things a whole lot easier!

so... after gallons of hot drinks and sooky sweeties and a week virtually hiding under a wee cosy blanket - I'm back good as new..yeah!
Thank goodness for our SDS (Self Directed Support)- Gone are the days of struggling on alone and so dreadfully tired! At least, this time, I was able to timetable in some proper sleep and I really think that is what helped kick that awful cold sooner rather than later!

This week, I felt better and I even made it up to Glasgow for my meeting with Carers Scotland. It's always a productive meeting there as the Advisory Group has Carers from all over Scotland. It's good to network, find out just what is working (or not for that matter!) all over Scotland!
If something is working well for Carers anywhere in Scotland? Well, we want to know and we want share it too don't we!

I sure hope that's me finished with coughs and sneezes, well, for a wee while at least and I'm sure glad the sun's made an appearance again so...we're ok and everything's rosy! lol

Hope things are a wee bit rosy where you are too!
(((hugs)))
Maz x

SDS, Sleep and Struggle...

Hi guys, it's all still a bit of a struggle here!

We're only just touching afternoon and already my thoughts are returning again to sleep! Where Carers are concerned, I bet I'm not alone in that one!

Sleep is such a valuable commodity for Carers. In fact it's the key to surviving and the difference between drowning and reaching a happy shore, so to speak!
You can probably tell, Coo's antibiotics have not kicked in yet. It's seizure city here and there's been no let up. I'm monitoring things, pumping in the meds and still hoping for the best for a turn around soon...and there may well be! It's not unheard of for Coo to respond quickly and be fine really quickly too so...fingers crossed!

Being stuck in at home again, my thoughts have returned to what it was like before we had our SDS (Self Directed Support), care package in place and while it's still difficult now, even in crisis, it was a whole lot worse in those days! No sleep, no real help and a constant struggle bouncing (literally), from seizure to seizure and trying to hold it all together - it's a hard, difficult position and sadly one, a lot of Carers still find themselves and that is dire!

At least I know, however bad things are, at some point...I will sleep! and what a difference that makes, just to know if I can hang on today, tonight sleep will come!
I know most people take this most basic of human needs for granted but I also know, I'm one of the lucky ones as too many Carers are still struggling on alone and with little real respite! That's why I try to influence those in power, those who really can help Carers get a better deal - Carers don't want the Earth, they don't even want a whole lot really, they just want some basic kindness and a wee hand up...not a hand-out and there in lie's all the difference in the world!

I hope you are getting some rest and a little kindness where you are today.
Stay strong my friend.
(((hugs)))
Maz x

Antibio-land and Rain Dancing...

Hi guys, it never rains but it pours - literally too!
The lovely sunshiney weather has all gone and the rain clouds have really gathered around us!

We came back from our lovely, wee Respite break, all happy and rested and banged right into another health crisis for Coo.
He is so very poorly. He has aches and pains, a high temperature, an increase in seizures and the makings of a really bad cold! Now, if you or I have a cold, it's a bit of a pain but with Coo? It's a whole other ball game!

When to get help...
For us, that's not an easy one to answer!
Coo hates hospital admissions. We both do, they're always problematic, stressful and downright difficult and are always a last resort, if things can be contained and managed at home then...they will be!
I nursed things around the clock over the last five days but nothing worked and his temperature remained high around 39 degrees and as he refused the hospital again, it was back to our GP today. Coo has a chest infection, it's not pneumonia - this time, thank goodness for that but it's back on the antibiotics for yet another run!

We're back in Anti-bio-land again but I'm hopeful things will start to improve once they kick in and until then?
I need to remember...

Here's to some successful rain dancing!
(((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