A lifetime caring #CarersWeek

 Hi guys, it's such a long time since I blogged but #Carers Week has inspired me again.

I'm hoping by sharing our journey other carers will self identify and ask for help. Don't wait the 20 odd years I did, do it now!

I always hope as each year rolls by that things are improving for our carers, who are working hard day in and day out just keeping going and sometimes in the most difficult of circumstances. 

Caring long term...

I've been effectively caring for my whole adult life - I just didn't know it for the longest time. Like most carers I just got on with it and like the swan gliding along the water, nobody really saw or even knew how hard it really was frantically paddling underneath the surface just to keep it all going! Little sleep, snatched where I could, nursing and coping with multiple daily seizures, raising our kids in the midst of the chaos and trying desperately to make ends meet financially - a hard life and sadly one that resonates and is still all too common for many carers. 

Carer Pressures... 

The worst of times is three fold really, one is dealing with disabilities and serious health issues coming at you from all directions and usually all needing immediate attention, another is the business of 'caring' the forms, the DWP, the appointments, the phone calls and the stress and that's before you add in the essential care needed every day just to keep things going! The third is the feeling of not feeling validated and valued by society in general. I found this really difficult for the longest time especially when the press and government started to wage war on people living on benefits and call #carers like me economically inactive! Shame on them! Carers work harder than everyone else, they don't clock off at the end of the day. They don't have sick leave or paid holidays and most seldom have any respite either. It took me over twenty years to seek help and even then it was on the back of a horrendous crisis where Coo was having 30 seizures a day for a 6 months period. We were living in pyjamas and struggling on day after day until I just couldn't sustain things any more and went to social services. Thank God I did! Help was out there, we were listened too and we did get help!

Carers Week...

I used to cry at #carers week. Events and day trips were offered but I could never go! There was no replacement care and Coo just couldn't be left at all. Life was enclosed and small. Everything was stressful and tense all the time as we drifted between appointments, hospitals, clinics and home. It was such a difficult, dark time for us both in so many ways. Fast forward a few years and things changed, we had to hit rock bottom before we found any help but it was out there. Isn't it sad that we just didn't know! Why is that? We really need to reach out more, try and break down those barriers!

SDS (Self Directed Support)...

SDS has been a game changer for us. It's been running for a long time, first with Direct Payments and then the move over to SDS a more person centred approach and it is! Our care package and I say 'our' as we both benefit from the support it provides. Coo has Looby our P.A. and that means I can sleep during the week and get some proper rest as I know he's fine, she will deal with all the noise, mess, chaos and seizure activity and I'll come back fresher tomorrow so we can all live to fight another day!

Here we are a few years ago sharing some of our story

Please if you are caring long term and it's a lot, don't be afraid to look for help. There's so many negative stories out there but there is also help and support too so reach out!

Take care of you too

((hugs)) Maz 

PIP, Carers Week, SDS & IJB...

Hi guys, it's such a while since I blogged, my hands still hurt when typing and I've not found software that fully understands my Scottish twang...yet! lol

So what's been happening?
PIP...
Well, our hassles with DWP and PIP (personal independence payments) are over - well for a while at least! An assessor visited our home to save further disruption and upset for Coo and seemed to understand the issues of coping with such complex needs and thankfully, things went smoothly this time. It's such a relief it's finally over as we've both been so stressed with this process hanging over us for the last few months. Hopefully things will calm down a little now and we can get back to normal...well normal for us that is! lol

Carers Week...
Carers Week is easier for me to enjoy these days SDS (Self Directed Support) being in place makes the world of difference! Regardless of how Coo is feeling (within reason!) my plans seldom need to be cancelled and if I want to pop over to Irvine to the Carers Centre for a 'posh tea party' or a wander in the park it's ok...I can go and so I did!

North Ayrshire Carers Centre Irvine. (Facebook)

Here are some Three Towns Carers with two of our newly elected local Councillors Jean and Davina...they like a wee posh cuppa too!

Media Interview...
Look out for me in Caring Magazine next time! I gave an interview on North Ayrshire's Carers Appreciation card - it's a wee thank you for carers and among other things, gets them some discounts on local goods and services. The interview started out about our carer card and then grew arms and legs as I shared some of Coo and I's journey so it'll be interesting to see how it all comes out in the wash or the print for that matter! mega lols

IJB, Health and Social Care Partnership...

After all the recent changes, campaigning and elections, we welcomed new members and...it's all hands on deck and back to work for our IJB (Integrated Joint Board).
 
 Our new Carers Champion..

Councillor Christina Larsen is our new North Ayrshire Carers Champion and has joined us on the IJB so with new councillors and a champion who are carers themselves, we should have the best of chances in making sure carers voices are heard! I honestly feel, it's only by working together we can really achieve change for all carers!
Keep strong!
(((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

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

Carer Struggle & Blogging in the wee small hours...

Hi guys, we're still in anti-bio-land!

It seems like we've never left and blogging in the wee small hours is never a good sign!
It's been a difficult night so far and I'm taking a wee respite over a cuppa and just trying to regroup a little!

Where to start?
Ok, things are pretty dire here.
The chest infection Coo developed over a month ago, is still with us. He's had three courses of antibiotics in five weeks and he's no better! He's had a chest x-ray too - we're waiting on results- but we're really struggling. The seizures are thick and fast, the cough is awful, the phlegm is catching him and he has a bluey tinge to his skin while he's seizing. On the plus side, he's recovering between seizures so we're still ok but it's now getting just a little scary!

Coo doesn't cope well, with hospital admissions and from past experience, out of hours services can't really help - we have the rescue meds and wander/seizure alarms at home so if things can be contained at home, and they usually can, it's easier all around just to keep a lid on it and cope until morning!
I'm so worried, we're headed back into that dark place again with aspiration pneumonia but I'm so very upbeat with Coo, please God it doesn't come to that again!
We'll see our doctor again tomorrow!

The life of a Carer sure is a roller-coaster ride!
Last week was Carers Week and I had a lovely week!
I was out and about, had some fun and some fresh air too and even laughed a lot at a 'Laughter Yoga' session and I'm so glad I did as this week has been so very difficult!

Thank God for SDS (Self Directed Support), I have some Respite in place and can access those little opportunities and chances that are important for me -  lot's of Carers are not so lucky and that's to all our shame!
One thing's for sure, I'd have struggled a whole lot more without proper support and for that I'm eternally grateful.

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

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

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


On BBC Radio today...

Hi Guys, I've been busy!
It's Carers Week and to help raise awareness...I've been on the...radio!

Carers Scotland asked if I would share what it's like being a Carer, mainly to raise awareness of Carer issues and how it really is and...of course...I did! lol
It was the CallKaye show. It's a  BBC Radio Scotland show with Kaye Adams, who's a well known journalist here in Scotland.
...and the topic?

Who Cares for Scotland's Carers?

Well, I thought about it, I'm concious Coo doesn't really like me sharing too much of our lives, but... on balance and with a topic like that, I had to be involved didn't I!

It went well, I was only on the air for the last few minutes but I did pack a lot in! and I'm glad I did decide to do this as it really helps raise the profile of Caring issues in general and, in my book,  that can only ever be a good thing!

I hope by keeping up the pressure and speaking out for Carers, one day, we can all get a better service and the support we so desperately need!

Keep fighting the good fight and don't lose heart, surely better days must be coming soon!
(((hugs)))
Maz x

Coo's arm...

Hi guys, Coo's mishap is still a problem!

We saw the doctor today for Coo's usual blood tests.
While we were there, he had a look at his poorly arm - it's painful and now developed a bit of a clicking sound when he moves the elbow joint, well Coo never does things by halfs! lol

The up-shot is, he's hurt it during a seizure and needs to go to the A & E.
As our GP puts it so aptly...
"I do try me best but I 'aint got x-ray eyes!" He is a bit of a character, our doctor don't you think?
I guess, with all the scrapes he's seen Coo and I through over the years he's more of a friend than just our doctor!

Anyway, Coo's decided to wait - he's never very kean on visiting A & E! and our hospital is quite far away and Friday nights there are usually bedlam and best avoided if at all possible!
His reasoning is...one more day won't hurt things and it's his choice I suppose!

Hey-ho, looks like another hospital visit is definately on the go tomorrow!

Wish us luck and a speedy in-and-out too! lol
(((hugs)))
Maz x

Carers Week Puppy...

Hi Guys,
I came across this during Carers Week and wanted to share!


Here's the story...

A farmer had some puppies he needed to sell.
He painted a sign advertising the 4 pups and
set about nailing it to a post on the edge of
his yard. As he was driving the last nail into the
post, he felt a tug on his overalls. He looked
down into the eyes of little boy...

"Mister," he said, "I want to buy one of your
puppies." "Well," said the farmer, as he rubbed the sweat
off the back of his neck, "These puppies come
from fine parents and cost a good deal of money."

The boy dropped his head for a moment. Then
reaching deep into his pocket, he pulled out a
handful of change and held it up to the farmer....
"I've got thirty-nine cents. Is that enough to take
a look?" "Sure," said the farmer. And with that he let out
a whistle.. "Here, Dolly!" he called.

Out from the doghouse and down the ramp ran
Dolly followed by four little balls of fur.
The little boy pressed his face against the chain
link fence. His eyes danced with delight. As the
dogs made their way to the fence, the little boy
noticed something else stirring inside the doghouse.

Slowly another little ball appeared, this one noticeably
smaller.. Down the ramp it slid. Then in a somewhat
awkward manner, the little pup began hobbling toward
the others, doing its best to catch up...
"I want that one," the little boy said, pointing to the
runt. The farmer knelt down at the boy's side and said,
"Son, you don't want that puppy. He will never be able
to run and play with you like these other dogs would..."

With that the little boy stepped back from the fence,
reached down, and began rolling up one leg of his
trousers. In doing so he revealed a steel brace running down
both sides of his leg attaching itself to a specially made
shoe. Looking back up at the farmer, he said, "You see sir,
I don't run too well myself, and he will need someone
who understands."

With tears in his eyes, the farmer reached down and
picked up the little pup. Holding it carefully he handed it to the little boy..
"How much?" asked the little boy "No charge,"
answered the farmer, "There's no charge for love."

The world is full of people who need someone who
understands. It's National Friendship Week.
Show your friends how much you care, please share!

Now, how cute is that!

Sending a sunny smile, puppy dog style!
(((hugs)))
maz x

Carers' Week is over...

With Carers' Week all over for another year, it's time for looking back over things.
Last year, Coo was a bit better than now, but I didn't have much in the way of help & support.
This time he's not so well but we've made the change to get in some 'Care Services' to help us at home.

Our Direct Payment let's us employ Looby (our daughter) flexibly for 28 hours a week and this has made things a whole lot easier.
Things like, if I couldn't find my phone I couldn't go out, as I needed to be continually calling home checking on Coo.
I also had my parents on standby to go help in a hurry if I called them up!

This new way is better for everyone, I can plan when I want to do things and know it will happen rather than be disappointed at the last minute as Coo isn't well enough to leave.
I've been able to go to the Carers Week events with a clear concience which is a new experience, days out with no guilt!
Looby's able to fit around the hours we need her and best of all, I now know when I will have a full nights sleep, previously I just kinda drifted in hope that at some point I'd get some rest.

Looking back I don't know how I managed but having had some regular sleep a few nights a week, I know I was starting to get burn out!
Things are more calmer at home, not that it was bedlam before! but I find myself smiling more and little things don't seem to bother me so much.

For Carers, lack of sleep is more of a problem than I realised, it's just, when you're in a care crisis with not much sleep for a long time, it kinda becomes normal and it's only when the cycle is broken you realise how bad it really was!
I hope anyone considering using Direct Payment finds my experiences helpful!

maz x

Carer's on the move...

Hi, as part of the Carer's Week celebration our group went on a fun walk.
There were 15 of us and the walk was around a private estate along both a beach and woodland area, very pretty but also pretty muddy at points!

I was worried as the walk was going to last for around an hour and the furthest I've walked in months is from the carpark to the shops and back!
I needn't have worried with all the chat and laughing that comes along with fresh air and 15 women, the time passed really quickly and I didn't notice I'd been walking so long!

We finished up at a large 'Garden Centre' for tea, sandwiches and scones, and on the way home...well, I treated myself to a mint choc chip ice-cream, something I hadn't had in years.

What a pleasant day!

Looby was home with Coo, so I really had a hassle free day for once!

maz x

Laughter is the best medicine...

This week is Carers Week and there's lots of activities on offer here!
Normally I don't have the chance to get involved but with Looby to P.A. for us, this year will be different!

Today, well, I've had a massage in the morning, learned how to make some tast sandwich fillings and had them for lunch!

In the afternoon?

It's a....A laughter workshop!

In the end it was a lotta fun, but at the beginning, when a lady turned up dressed as a clown with a box of dress-up wigs under her arm I wasn't too sure!
Within 15 minutes we were singing, dancing and clapping all with silly wigs on top to boot!
We must have looked a sight!

I needed a laugh, it's been a pretty tough week, the weather's been hot here and both Coo and me are real sleepy, not a good thing when you have sleep seizures!

Incidently Coo got back from the dreaded Stag night ok, he had a little alcohol and seemed fine!

So I was all in a tizzy for nothing!

maz x