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!

Hi guys, well 2020 hasn't gone swell has it!

Hi guys, 2020 has been pretty awful for us but we're surviving...just!
Dad...
My Dad went out to his usual podiatry appointment in March and took a stroke. It was a mad dash to our local hospital in Kilmarnock but with each passing minute it was becoming more and more apparent he wasn't going to make it. Originally I was told it would be hours but the wee soul clung to life for another eight sad, painful, days. My sisters live in England and Spain so at least they had time to see him.

By the end of the eighth day we were just praying of a blessed release for him. He died on a sunny St. Joseph's day (March 19th) which is a comfort as St. Joseph is the patron saint of those at their end of life, we're Catholic if you hadn't guessed! I've taken some comfort in the fact he's back with my wee Mammy now but it's all still a bit raw.
SDS...
We were lucky as our SDS (Self Directed Support) care package, kicked in seamlessly so I didn't need to worry about care for Coo. Looby our P.A. came to stay with him to allow me to stay over at hospital with my Dad on those last few precious days and what a weight off my shoulders that was!
We thought the worst had passed but oh my we were in for a bit of a rough ride -
A Lockdown funeral...
Lockdown kicked in didn't it. We weren't even sure if Dad's funeral would be able to go ahead at all. We moved fast, saw our priest and Dad ,being Dad had a funeral plan all arranged with our local undertaker so thankfully after much tears and troubles - half the stuff he'd arranged in his plan could not now happen due to COVID-19 restrictions - but we did at least get a mass!

The very last one in our church before they totally closed down but no hugs and no sitting together, we couldn't even get in the family car! Immediate family only, no cords for family either, the poor cemetery workers laid Dad into his final resting place. It was all so different from two years earlier, where Mammy had a night of rest in our church, a full congregation of family and friends and a lovely funeral tea to share with our family but Dad would have understood. We did our best and at least he got his mass!
Isolating...
Fast forward four months and we're still in limbo. We're both still Isolating!
Like lots of other people with disabilities COVID-19 has reeked havoc! We're both high risk as I have RA (Rheumatiod Arthritis) I'm immune suppressed and Coo has COPD and his Epilepsy? Well any infection or raised temperature spikes his seizures crazy - he won't risk the hell of infection and seizure city he had some years back with pneumonia so we're in for the duration!

All in all 2020 has been a pretty traumatic time but with things in Scotland seeming to be heading in the right direction with suppressing the virus, hopefully we'll be coming out the other side sooner rather than later!
Lastly, a huge thank you to our wonderful NHS!

Thanks...
Dad was in the Acute Stroke Unit in Crosshouse hospital Kilmarnock and the staff were wonderful, caring and kindness itself. Without their attentiveness we would have found ourselves in such a painful and more difficult position. These caring staff really made a huge difference at what was such a very difficult time. Bless them.

Stay strong friends, never was it truer than now, only by working together we can really help one another!
Keep safe.
((hugs))
Maz x

Still caring, challenging and carrying on...

Hi guys, it's been months since I blogged!
I guess I kinda fell off the radar a bit when my mum died, I kept going throught the motions caring for Coo and picking up the support for my dad too and I guess, something had to give!
I don't think I really dealt with my grief, well how do you, where do you even begin? especially whist caring for someone else already and taking on even more caring responsiblities!
Carer Health
I suppose it's just taken some time to regroup but I'm doing ok!
My own health took a bit of a tumble with everything that's happened.

My Rheumatiod issues have continued and I'm swallowing pills daily (more than Coo - which I never even thought possible!) and jabbing a Metoject pen every week - but I think I'm coming back up at last!

Self Directed Support
Our SDS has enabled me to have much needed support, timeout to grieve and just enable me to find my way again and keep going and for that I'm eternally thankful. I wish it were so for all carers but sadly, it still seems a bit of a post code lottery where SDS is concerned but I'm still hopeful this will change moving forwards!

Carer Challenges 
Even during this difficult time, I've needed to stay involved with Carers Scotland and my local Health & Social Care Partnership I like to make sure #carers voices are heard and wherever possible I do! lol

I'm so heartened Scotland's shiney new Social Security is shaping up to be a more caring agency than the one we have prevously endured with DWP (Department of Work and Pensions).

I have never agreed the best way forward was Austerity, sigma and fear and with a strap line of Dignity, Fairness and Respect, this has to be a major improvement and that being said, I've been interviewed for The National newspaper, on the new Carers Allowance Supplement coming to those carers in Scotland who currently receiving Carers Allowance. Whilst this is a huge step in the right direction, there remains so much to still be done - Carers work...and they work really hard, with very little support with the main 3 H's...Help - Health - Holidays!
Let's start making them a priority for all our Carers!

Keep strong as will I
((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

Fabby Feb, SDS, Carers Advisory and raising the Carer voice!

Hi guys, I just turned around and January was all gone so...here's to a fabby Feb!
Here's a clue...

 Oh dear...
Between Coo and I, we've been racking up hospital appointments!
Typically for January, the cold weather came bringing with it, the coughs, sneezes and seizure increases too. In between appointments, jabs, pills and potions (for us both!), we just pretty much kept warm and got on with things at home.

Now we've entered February, Coo's feeling back on the up again and that can only be good news for us both!
Caring is such a balancing act especially in winter, add into the mix some health issues of your own and it can be a bit of a hard time all around.
It's at times like these, it's so very important to have some proper support...it's the difference between drowning and struggling to safety and survival! For me, it means, I've still managed to get out and keep some interests away from home. Before we had SDS (Self Directed Support) in place, things were very different and I was stuck at home trying to hold it all together and struggling along for what seemed like ages!

SDS...so just what is so different?

Well, for one thing, I made it out for coffee and some support with the Three Towns Carers, now that might not sound much but support from other Carers who understand is crucial!
I also got along to the latest Carers Advisory meeting to discuss Health and Social Care developments and our 'Carers Appreciation Card' and I made it up to Edinburgh, meeting up with Carer reps from all over Scotland!
Without the flexibility and freedom of SDS this would just not have been possible! I would have been still stuck at home and I'd not have done my bit in making sure Carers voices are heard!

Keep strong and keep going as will I!
((hugs))
Maz x

Carers health, Consultations and caring...

Hi guys, what a busy time it's been but where to start!
Health...
Ok, I've not been blogging recently as my finger hurt too much. I'm still coming to terms and struggling with pain and rheumatoid issues.

I seem to be bouncing from one appointment to another be it University Hospital Crosshouse, Ayrshire Central or even the latest onslaught... podiatry at Biggart!
Coo seems to be helping me almost as much as I help him now but we're coping - life has a way of just going on and finding a way doesn't it?
New Social Security System...
Anyways I'm keeping busy as always! Lol...I've been working with the Scottish Parliament again, this time it's around Scotland's new Social Security system  -incidently I  like the shift away from calling it 'Welfare'  I campaigned for that as I've never liked that term, it has too many negatives attached to it now!
Being a Carer rep. on our Health and Social Care Partnership, I agreed to be involved with this Consultation as I honestly feel it's just so important that Carers voices are heard...we are at the sharp end and if this is going to work real people who have both good and bad experience of the current system need to be involved and share how things really are out there!
Will it make a difference? 
I sure hope so...

 

Carers are not unemployed! We're very much employed working harder, longer hours and in most cases with very little support! There must be a better way and we must all help build it!


Caring...
Coo's still struggling with seizure activity, its like we're stuck on that roller coaster ride and no sooner do things begin to settle but we're off again! At least we have help with our SDS (Self Directed Support) in place so even though I'm  feeling poorly with the RA symptoms I'm still getting some much needed sleep and keeping going too. Without this much needed support things would be a whole lot worse that's for sure!

Take care and stay 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

Health & Social Care event October 19th, have your say...

Hi guys, with all the latest hustle and bustle, we're re-grouping at home for a few days!
Not being one for totally shutting down during quiet times, I'm always on the look out for interesting events locally and I've found one! It's a workshop looking at how people can input, plan and improve local services.
Our Council is pretty good on the consultation front!
They've proved it with all their SDS (Self Directed Support) work and all the welcomed input from Carers while writing the Carers Strategy so when they say they're looking for local people to come along and honestly give their views on improving services, I'm happy to be involved and extend an invitation too!

Here are the details...

Six members of my Carer group, the Three Towns Carers - (plus me!) - are going along to this event on October 19th in Irvine so if you're in our neck of the woods in North Ayrshire, why not speak up and share your experience? I know I will!

Hope to see you there so...get booking! 
(01294) 443044
(((hugs)))
Maz x