Carers, Support, DWP & HSCP

 Hi guys it's so long since I blogged but I'm drawn here in times of stress so here we are again!

I'm still caring for my husband Coo (he has poorly controlled Epilepsy, multiple seizures every day), it's a struggle but we get there!

Usually I keep pretty upbeat. I'm just so used to keeping all those plates spinning all of the time and dodging in between the many moments of crisis! I guess most Carers live this precarious lifestyle, in the end we kinda don't have much choice!
Amongst the usual meds, appointments and health issues we've had DWP knocking at our door with the dreaded migration across to Universal Credit. 

How stressful has this been? Wow - we knew it was never going to be easy but WOW! It's been a total roller-coaster. Stress levels are through the roof, Coos seizure activity has escalated and things have been just awful. Coping with 8 or 10 seizures a day isn't easy but upwards of 15 and todays 20 is just so much harder! We're coping but the stress levels need to even out and please God this process is completed soon! 

The one ray of  sunshine is Donna, the worker from North Ayrshire Money Matters team, who has been supporting us. She has been a wee diamond and has helped us navigate this latest hurdle with kindness and patience. Thank goodness we had some help! I really feel for people who are struggling with this process alone and if that's you, please seek some help!

It's when things are difficult we truly need to dig deep and just keep on going but when help is at hand it just removes some of that pressure and makes it all so much easier. We are blessed with some great support. Carers Gateway have provided a much needed diversion with some timeout and respite days over the last few stressful weeks and our HSCP (Health & Social Care Partnership) have continued to provide an SDS (Self directed support) care package which supports us both and just enables caring at home to continue. Without this support it would not be sustainable anymore. If you're in this position (I was for many years), please reach out! I did, eventually and it's made all the difference for us both!

Stay strong as will I, surely more settled times are coming!

((hugs))

Maz

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 

A new year, Carers, COVID & support...

Hi guys, it's so long since I blogged and life has changed so much but with a new year looming, I think it's time to reflect!

I used to get a bit stressed at the thought of a new year coming. I'd worry about the things I said I'd do and just didn't get around to. You know the kind of thing...lose a few pounds in weight, hold onto a few of the other kind of pounds and save for a rainy day...that kinda thing! Gosh if only life was as simple as that now - COVID came and changed everything especially for disabled people and their #carers.

The stress of living with COVID all around us has really changed my perception. Life is hard for everyone but it's really hard for carers!  It's a constant stress and worry every time we have to leave home at all. We've been isolated before but this is on a whole different level!

I still think, the most important thing being a Carer has taught me, is to slow down a bit and just take a breath! The world still turns just the same while you catch your breath a bit. Mainly caring has taught me just to count my blessings a little and be thankful for making it through the last year safely in the first place and that's never more important or relevant than now!

I guess, most people used to take that kind a thing for granted...good health, I mean! Whilst everyone was well and busy hustling and bustling about with their life at such a great pace, they never needed to give a second thought to such things. Planning well into the future for work, holidays or pretty much anything they fancy and it's only when something happens to you or your loved ones that you really need to stop and think at all. COVID changed that. People were forced to stop and think of their health and that of their loved ones, even make choices on vaccines, wear masks and isolate and carers had to add all that into their already leaky boat!
Struggles...
Looking back, honestly? It hasn't been the best year for a lot of folk especially carers. We've both struggled with health issues and stress has swamped us at times. Sometimes I wonder just who is caring for who but there have been some good times too...really!

It's the little things that have kept us going. We were lucky we bubbled up with family and were still able to see our grand-babies (if everybody lateral flow tested ok). We would not have survived this isolation otherwise.

We were lucky our SDS (Self Directed Support) continued - we weighed up the risks and decided we couldn't manage without it so we were really careful, flow tested galore and just battened down the hatches and carried on!. 

Coo's seizure level's still really high at around 250 a month and he's currently stressing as there's some more health issues in the mix. My RA (Rheumatoid Arthritis) is still a bit of a struggle so hospital appointments are still a bit hectic but we're hanging on it there! There's been lots of stress but we're coping!

On the plus side, Coo's no worse and not nearly as bad as the dreadful 30 seizures a day we've previously coped with! There are still crisis points and things are not brilliant by any means but with the vaccines and flow tests things are a little bit better than they were this time last year and that's a bonus!

Let's hope 2022 is kinder to us, stay strong and stay safe friends ((hugs)) Maz!

Carers, life and isolation...

 Hi guys, it's been such a long time since I blogged - things are tough!

Just like others with disabilities and their carers, we've been living pretty much at home this last year, just trying to keep safe. On the whole we've coped but this enforced isolation has taken a real toll. It's difficult to pinpoint exactly when in the lockdown things began to change but they have! It feels like there's a distinct disconnect from the outside world when you isolate for such a long period of time and I think it'll be scary to start opening back up once this is eventually over.

I've lived such a busy life for so long, meeting people, rushing between meetings and appointments and always had caring responsibilities and health hassles with my Dad and Coo in the mix too and I've always kept spinning those plates and juggling all the balls, just keeping them all up in the air, it's what I know but now...it's all so different. Life has changed!

The caring continues as it always must but everything else in life has kinda stopped. 

I miss the busy-ness of life. That happy chatter in the shops, sharing a smile with a stranger across a busy cafe whilst having a wee cuppa - remember that wee pleasure? Mostly, I miss the tangible and emotional support from other carers, who without any need for discussion, just know how it really is and understand! 

I know everybody is feeling the restrictions on their lives right now and we all have had to dig deep emotionally but spare a thought for Carers, it's been a bit of a double whammy for us, we were already digging deep emotionally before the pandemic even arrived! 

Stay strong and keep hanging on in there!

((hugs))

Maz x

Decisions, surgery, caring and coping...

Hi guys, I turned around to draw breath and January was all gone!
How have we faired? Not so well, already 2020 is proving challenging! So far it's been cancelled meetings, appointments galore and enforced time at home.
Treatment decisions...
Coo needed surgery. He wasn't suitable for a general anaesthetic due to all the sleep seizure activity - he has NFLE (Nocturnal Frontal Lobe Epilepsy), effectively sleep seizures so after discussion we opted for a spinal injection instead but in the end, on the day and after discussion with a very kindly surgeon, Coo opted to be brave and go with a local anaesthetic instead! Offt brave guy!
Surgery...

I gotta say, the staff were brilliant at Ayr Hospital, all the arrangements we'd asked for, additional space, the fact I'd need to stay close to keep him calm and also awake as he was stressed and shattered from the additional seizure activity the night before. The last thing we wanted was him left on his own, falling asleep and seizing on the ward!
I can only thank the ward staff, they took everything we said on board, really listened to us and the result was a far easier and less stressful experience for us both!
Well done getting it right for patients and carers NHS Ayrshire & Arran
Caring...

We got home, battened down the hatches and prepared for the night ahead's seizure activity. Just hoping he wouldn't bang around too much and burst any stitches and we'd cope OK until morning.
I think that's probably the worse bit for carers, it's the stress and the second guessing and the always needing to keep one step ahead in a crisis and just when you think you're home and dry? Bang, a big fat spanner in the works...Coo went into shock, he got the shakes, nausea and his temperature dropped to 35.4C and he felt really poorly.
I know from lots of experience when to call for NHS backup and this was one of those times.

Thankfully with some medical advice and some reassurance too, we coped at home - Coo did not want to go through yet another hospital admission, I wasn't keen either and I felt comfortable to monitor things and just wait it out.
A big cosy blanket, lot's of peace and quiet and a wee cuppa and slowly things stabilised again and we all lived to fight another day!

Caring is never easy that's for sure but it's never boring either! Here's hoping for a more settled February!
Keep strong
((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

Back #stronger #sad still #caring...

Hi guys it's been so long since I blogged I almost gave up!
It's been such a difficult few months.
I got sick, my Rheumatoid Arthritis spiralled and I picked up yet another diagnosis (Fibromyalgia) to add to the mix. Coo got sick  - viral which increased his seizure level and he went back on that AED (anti epilepsy drug) see-saw again. you know the one, too much drug in the system major seizure activity and too little? Ditto!

Worst of all, my lovely 'fit as a flea' mum got sick and there's no easy way of sharing sad news...my mum died just after Christmas. My rock. The one who helped me through when I struggled and things were so desperately difficult, was gone and in a heartbeat things changed forever.
 Feelings
We supported one another, my dad, sisters, Coo and I but it's all been so very difficult.
How do you begin to recover from such a gut wrenching blow? Honestly? I still don't really know. The practical side of me took over and the things that needed done, were done but all the feelings and hurt were jammed in a box, tied up tight with a big bow and locked away for another day and I'm unsure if I will ever open that box an look inside!
Being a carer is like that, well it is for me, no matter how you feel or what is happening in life, the business of caring continues, it must and so it does...regardless! I think that's how you cope with all those issues that caring brings or who knows, maybe it's self preservation #carer style! I doubt it's particularly healthy but it gets us by in the mean times!
 Carers support
I still managed to support #carers and bless them, all my wee Three Towns Carer friends came to support me through mum's funeral - I felt truly blessed! Caring for dad, mum was a three towner too and with some bereaved themselves, it couldn't have been easy.
I think that's the benefit and real value of community groups like ours, that peer support and love shared when people really need to know they're not alone!
I'm sharing this pic as my dad always thought it was hilarious I took mum demo-ing in her seventies but she was game for anything really and the state of what is...just us makes me smile...I can still hear her shouting 'axe the tax' mega lols

When we work together, we truly are #buildingcaringcommunities
((hugs))
Maz x

#carers health caring coping and SDS....

Hi guys, I blinked and summer was all gone and I'm guessing I'm not the only carer that's happened to!

Over the summer, I've spent more time at hospital appointments than Coo and I'm still adjusting to this set-up. from Rheumatology and Podiatry to Orthotics, Neurology for Coo and countless pharmacy visits in between, we've hit the lot!
Honestly being poorly and caring too is hard for everyone. I'm finding that quite honestly - Rheumatoid Arthritis kinda sucks!

Just who cares for the carer...

Well, I'm finding out too, that's a good question and it has many differing views and answers...depending where you live! We're lucky, here in North Ayrshire our council fully supported the aims and objectives of  SDS (self directed support) and although there isn't an unending pot of money, they tried to support carers and the people they care for. Here, SDS wasn't used as a cost cutting exercise, it was used with a genuine will to help and thankfully #carers have benefitted from the process!
So yes, I've been poorly this year and yes I'm still caring a real lot but the support we have in place makes it manageable. It means I can still get out for a bit, go to some meetings and continue to do what's important to and for me so even with the current bout of ill health, that's made everything so much more easier for us both and for that we're truly thankful!

Caring...

Coo's still bouncing around on that AED (anti epilepsy drug) see saw. Too much drug in his system means more seizures and too little? more of the same...it's become so tiring for us both and we've hit a new low - his & hers blood tests every two weeks - #scunnered but we're hanging on in there!
#carers health... 

Please, if you haven't already...go get your flu jab! Carers do get them free from their GP so don't take no for an answer get it sorted! Trust me it's not that bad and could save a whole lot of  groaning and grief over winter and I promise the jab isn't anywhere near as big as this one! mega lols!

Respite...
Just for fun and even though things were difficult and it took a lot of energy and planning we got away for a wee trip up to Glasgow to another concert!

It was totally awesome, really rather wonderful - We loved it...can you tell! mega lols After the concert we had a wee sleepover to recover and best of all?
We came back all rested and happy and ready to carry on so job's a good un!
Onwards and upwards!
(((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

Carers, Hospitals & Civic Awards grand night out...

Hi guys, what a time it's been here!
Ok, where to start...

Results of sorts..
Guess what? The results are in and I don't have Carpal Tunnel Syndrome at all - I have all the same symptoms but it 'aint Carpal Tunnel! The orthopaedic Surgeon says his opinion of December has not altered - it's a Rheumatoid flare up so hopefully I will have some news soon as after a failed referral...at last I will see a Rheumatologist this week! I'm at the point where I don't really care anymore which label is attached, I just want an end to all the pain everywhere and to be able to use my hands properly again.
All my usual coping mechanisms are out of reach. My sewing machine is now stowed in the cupboard out of sight - Jessie's half made Dora Explorer quilt is still sitting from October! - and my harp sits just waiting to be strummed again.
I guess I'm just a bit fed up of the whole business now but I've not lost all hope yet!
To cap it all, Coo is poorly, he's refused hospital so we're just keeping an eye on things and living quietly at home for now. The COPD (chronic obstructive pulmonary disease), has kicked in and his cough is awful, he has a temperature and yet another seizure increase too so between the two of us it's...happy days!
It's amazing what you can cope with when you have too but enough of that onto...
My grand night out! lol
It was on with the little black dress, the heely shoes and lots of lippy last week!

I was invited to our Provost Joan's 'Civic Pride Awards' ceremony. 
It's the one my wee 'Three Towns Carers 'won two years ago!
No pressure this time though as I was there as a guest so a night out, friendly company, a lovely dinner and the evening raised £20,000 for charities too!
What a great night and a happy wee diversion in what's been a difficult time!

At times like these, I'm so glad our SDS (Self Directed Support) is so flexible, it means when I have the chance to get out and enjoy something like this it's achievable but before SDS I'd have had to say thanks and decline. Just shows the difference proper support really can make!
The main thing is...We live to fight another day!

(((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

Tenders, troubles & fun times too...

Hi guys, it's been a bit of a bumpy ride this week!

Poorly times...
Coo is still struggling
His cough went but his seizure increase has stayed put this time and he's back up to 15 seizures a night, totally shattered, moody and so sleepy during the daytime - never a good combo where sleep seizures are concerned!

Anyhow, we were starting to worry just what else was going on, when he developed of all things a toothache! Coo's dentist is lovely, he knows Coo's situation and how quickly things escalate for him so a quick phone call and a visit later, it turns out it's a dental problem this time! Poor Coo's now had the starts of a root-treatment, Ed (his Dentist) says, it looks like the tooth nerve's been dead for some time and caused some infection so...mystery solved this latest seizure increase is most probably down to a.... root cause - pardon the pun!
There's no point getting the bloods done - infection always affects the level of meds in his blood so we'll need to wait a few days, let things settle and start all over again!

Busy times...
It never rains but it pours - I agreed to be part of my local authority's Tender process. It's the tender for services for Carers & Young Carers in our area and it's important.

I truly feel we can only make things better by working together so Strategies, planning, commissioning or  tenders, Carers need to be involved at all levels and I just had to take up this opportunity!
I'm glad I agreed to be involved as it has been a really interesting process but my-oh-my, what a week! With Coo poorly, the increase in seizures and struggles surrounding it all and #SIB meetings too, this could not have been a more difficult time! On the plus side our (Self Directed Support) care package, allowed extra respite hours to let me complete this vital piece of work and it did create a bit of a diversion so...it all worked out fine in the end!

Fun times...
I'm dusting of my little black dress and digging out the heely shoes tomorrow as I've been invited out to the Provost Civic Pride Awards. I'm taking another Carer with me  and with my Carer friend Fiona along too, we'll have fun out in our posh frocks and networking to the max!

I'll let you know how it all goes!
(((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

Welfare Reform sessions Scottish Government...

Hi guys, it's that time again...
I think it's important to stand together and speak out when we can and with that in mind, I've agreed to keep involved with the Scottish Governments tracking of Welfare Reform.
I've now been involved with this for around two years and the next session is almost upon us.

A wee memory refresher...
Quote...

The aim of the study is to explore the impact of welfare changes over time on a range of households in Scotland. The project is being carried out by the Employment Research Institute, Edinburgh Napier University and the University of Stirling on behalf of the Scottish Government. 

 

I think it's important for people to speak out, share their experiences both good and bad and as both Carer and person with disabilities, Coo and I, have had to struggle through and find a way to navigate the recent sorry system of changes!
Firstly, the initial issues and stresses of the move over from Incapacity Benefit to ESA (Employment Support Allowance). Next, the seizures, stress and the hassles of coping with the ATOS people then last and by no means least, our struggle with 'Bedroom Tax' and securing a HDP (Housing Discretionary Payment). Both our MSP Margaret Burgess and MP Katy Clark helped us through what was a difficult time. Katy raised our case in the commons and we did get a reply from David Cameron PM.

I am dismayed the UK Government and media still continue to use their shameful rhetoric in relation to Welfare Reform. The 'Scroungers and Strivers' labels have stuck and only succeed in fuelling anti-disability feelings, further alienating disabled people and a continuing divide in our already fractured communities.

ATOS has gone but the stress and worry remain. We dread the continual stream of 'brown envelopes' from DWP that wing their way through our mail-box but I still honestly feel, most of the stress and issues created by this Welfare Reform process could have been avoided, if the policy had been planned and executed fairly in the first place!

It seems so incredibly unfair that most of the 'cuts' continue to fall disproportionately on families with disabilities and their Carers and it's important the true hardship people find themselves in, through no fault of their own is shown!
It's so very important to speak out if you get the chance!

I'll let you know how it all goes, stay strong as will I!
(((Hugs)))
Maz x

SIB, Blustery days, woolly hats & Carer Flu-Jabs...

Hi guys, winter has arrived here!

Just how do I know?
Well... I've been chasing panels from my greenhouse all around the garden and I feel a bit like Piglet in Winnie the pooh and the blustery day and I've a feeling this is just the start!

Last week, some of my wee Carer group (Three Towns Carers), were missing in action. I think this time of year brings added stress and struggle for Carers, everything seems just that bit more difficult in the grey days of winter and I honestly think, grey days make for greyer moods and with coughs and sneezes all around, it's so hard to avoid the dreaded sniffles!

While a cold is a pain in the neck for most people this time of year. For most Carers it means, addition struggles coping in an already leaky boat and a dread they'll be ill themselves!

Speaking of which...NHS, Carers and Flu Jabs!

All being well, we're off for our flu-jabs this Saturday. Remember Carers get free flu-jabs too - see you're Doctor now! Don't just get a flu-jab for the person you look after but...get one for you too!
Trust me, the flu jab isn't really as big as this one! lol You won't feel a thing - well, not really!


Am I slowing down for winter? Heck no!
 I've a SIB (Shadow Integration Board for Health and Social Care) meeting on Thursday in Irvine and the Carers Scotland Summit in Stirling on Friday - I like to keep busy and I'm so grateful for the SDS (Self Directed Support) that makes it possible for me to stay actively involved with things that are so important to me!

Well, it's definitely 'woolly hat and wellie wearing weather'! so...keep strong,keep cosy and splash in a puddle too - it's good for you!
(((hugs)))
Maz x

SIB, Advisory group, Carers meet and new babies too...

Hi guys, what a week - I've been busy again!

First up...
I was out with my Local Authority and NHS Health Trust - I'm the Carers rep on the shadow integration board (SIB) and try to make sure Carers voices are heard just about as often as I can!

Next up...

I went along to the latest Carers Advisory Group last Thursday. It's a good meeting, Carers from our area, meet with the Carer champion councillor Steel and other council representatives and Carer services providers to discuss, issues and concerns. It's only by working together we can successfully change things and get a better deal for Carers.

 

Fun times...

On Friday, some of our Three Towns Carers went over to Irvine for a master-class in, of all things, hanging baskets! lol Now I grow loads of veggies and fruits but I'd never arranged a hanging basket before and guess what? It was fun!
Eight of us had a ball, planting up the baskets and tea drinking! What a pleasant way to spend a wet Friday morning!

I kept the best news for last...

Our new wee grand-baby arrived this week so...
meet baby Islay Eve with her big sister Jessica!
We're just truly tickled pink with the both of them!

 All in all it's sure been a busy week and it's been a happy one too!

Next up, it's the Carers Parliament on October 8th!

I hope you've had a good week too where you are and if you're at the Parliament...shout out for Carers!
(((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

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

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

A really busy week, awards and awards...

Hi guys, what a busy-bumble-bee-week I've had!

Award 1...

I got filmed today in support of CareNA
Do you remember I posted about a new community portal I'd been working on with my Local Authority? There's details here...

It's up for an award and a COSLA (Convention of Scottish Local Authorities) award at that!

I'm really pleased CareNA has been highlighted as it's a great resource, especially for Carers! It's really a-one-stop-information-shop with all the information you need, from Personalisation, SDS (Self Directed Support) and help in a crisis, to community groups and events in our area!

CareNA is already making life that wee bit easier for our local Carers and I'm so happy I had the chance to help shape this vital community resource!

Award 2 - The Provost Civic Awards...
I blogged here about my wee 3 Towns Carer Group being nominated for the Provost Civic Awards, we're nominated in the Community Group section and I have news - we're in the final!

The 3 Towns Carers are a wee band of local Carers who manage to support one another and navigate a way through the minefield that is caring. The key strength really, is the support and love freely shared with one another through all the stages caring brings.
From the shell-shock at the beginning, when everything's raw and new, through all the trials and triumphs of finding services and support, to the sadness and trauma when caring comes to an end.
We are just there for one another.
It truly is a real caring family!

I guess you could say...it's been a busy and successful week!
 My granny always said it's a good life if you don't weary so  here's to not wearying!
Keep strong guys,
(((hugs)))
Maz x