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Tuesday, 31 December 2019

Carers review, SDS & more

Hi Guys, new year is almost upon us! Where's the year gone? I think it's time for a wee look back goes!

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! lol

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! LOL

I guess, most people take that kind a thing for granted...good health, I mean!
Whilst you are well and busy hustling and bustling about your life at such a great pace, you never need to give a second thought to such things. You can plan well into the future for work, holidays or pretty much anything you fancy and it's only when something happens to you or your loved ones that you really need to stop and think at all!

I think that's probably what I miss most. All the planning and looking forward to things, the certainty and order of it all. It sure was a lot easier when finance was the only issue to getting things done and we could both climb a mountain if we wanted to! On the other hand, this slower pace of life has it's upside too, we have both learned how to adapt and find a way - there always is one - it's just finding it that's the tricky part!

Looking back, we've been on a bit of a journey this last year. If I'm honest 2019 hasn't been the best year. We've both struggled with health issues and sometimes I begin to wonder just who is caring for who but there have been some good times too...really!
Ok, we've had problems with the meds - nothing new there!
Coo's seizure level's still really high at around 250 a month and he's currently stressing as there's some more surgery looming on the horizon, add to the mix we're still supporting my dad and my RA (Rheumatoid Arthritis) is still a bit of a struggle, it's hectic but we're hanging on it there! There's been lots of stress but other things have buoyed us up!

** 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 they're better than they were and that's a bonus!

** With help, our quality of life has improved!
Our SDS (Self Directed Support) care package continues to make such a difference! I've blogged about some of the doors this has opened for Coo and I. Proper support really works, it can be life changing for people and strangely, it's not always the big expensive things that make the difference either, it's having the flexibility to make things work for you that's the key!

I've had some respite a wee while away with the girls - I didn't realise how much I needed a time out but it made such a difference, I came back feeling all refreshed and positive!

I made it up to Edinburgh for the Carers Parliament too and Coo and I managed a wee holiday, just some time out, some days away but so much fun!

Looking back, by far the most fun we had was with our cycles!

Who knew we'd enjoy cycling so much - I needed to adapt mine as I didn't want to give up cycling without a fight!
I'm hoping when Coo's well enough, the weather allows us and fingers crossed, my wrists hold up, we'll managed to get out for a wee while in the fresh air again. Coo's had lots of problems with infection and high/low white cells for the last few months, it's been tests, hospitals and issues galore and usually that would mean, avoid crowds and stay home but...not this time, we're hoping a wee while out on our bikes in the fresh air will lift our spirits and we'll feel the benefits too!

**The main three highlights of 2019?
Well, the first has to be the parliament visit!
I really felt so upbeat at the time, that things will change for Carers and in my heart, I still do, progress has been slow but again Scotland is leading the way with the new Carers Supplement - it's a small step but in the right direction!
There's still a ways to go, that is true but slowly, things are beginning to change and for the better!

**Another highlight is our wee holiday!
It's always stressful and difficult travelling with Coo but we did managed to get away for a few days on a proper holiday! What a wonderful experience this was for us both and without the next 2019 highlight (our SDS package), this would have remained an out of reach dream for both of us!

**The other main highlight? Continuing support with SDS?
Why was I ever afraid to move to SDS? We had such a struggle with this, I suppose, on reflection, we were just scared to risk the support we already had! It was and continues to be the best move we have ever made. It was the devil to set-up but has since proved it's weight in gold! it's almost goodbye 2019! I have to say, it's been a bit of a roller-coaster ride at times. The caring is tough.
With health issues acquired along the way it's never easy but I'm feeling more supported and in a happier place than I've been in a long time so that's a bonus for 2020 - the roaring twenties beginning!
I'm holding strong and remaining optomistic about the new year ahead!

I hope you're feeling happy too and...
'a' the best when it comes - Slainte Mhath!

Maz x

Saturday, 23 November 2019

Carers Parliament & Summit, Hospitals and proper support

Hi guys, I've been busy again this month and it's been all go!
Hospital hopping...

This week we managed the Ayrshire hospital hop tour - Ayrshire Central with my Dad and then a hop across to both University Ayr and Crosshouse hospitals with Coo. I'm hoping to just stay away from them for a wee while now we've done the tour! Sometimes caring just all comes together with a rush of clinical appointments and so it was this week!

I had to cancel meetings and rearrange care but thankfully we got there in the end!

Sometimes forward planning goes right out the window but working together usually pulls things back on track and proper support makes all the difference in the world as it enables some choice and control so I don't feel overwhelmed by it all and that's changed days!
Carers Parliament...
The Carers Parliament went well.
It's probably the only time where carers from all over Scotland get to come together, speak to those in power who can really make changes (Joe FitzPatrick MSP) was the speaker this time. Carers also share good practice, find out what's happening other places and generally go back and push for better services in there own area! What's not to like?
SDS (self directed support)...
SDS being in place means I can take off up to Edinburgh, stay over and join with other carers at the Parliament knowing Coo is well cared for and just fine at home, previously I just wouldn't have been able to go at all!
The uptake of SDS in relatively low and that's a shame considering all the positives as when it's implemented as intended, really person centred, it can be totally life changing!
Carers Scotland Summit...
Tom Arthur MSP co-convenor of cross-party on carers was the speaker this time.

It seems there's a lot of good work happening but it's not well known by carers in general so we'll need to push for more information filtering through if this is going to work more we did...push I mean!
I truly feel it's only by working together we can really change things for carers!
Stay strong friends

Monday, 28 October 2019

Still Caring, involved, struggling and coping!

Hi guys, it's been a while hasn't it!
I'm still hanging on in there - I seldom type now as the Rheumatoid Arthritis takes over but I'm still in there alive kicking and still caring!

Caring has increased, for us both... 

Coo's seizure pattern is erratic at best but we manage and just take each day as it comes.

Steadily my rheumatoid issues have taken over and Coo is helping me with buttons, fasteners, knobs, all the fiddly things and...well you get the picture and I'm still managing around all the seizure activity - it is what it is but I sometimes wonder just who is caring for who!

Our SDS care package is very much life changing - I can still get out, be involved with meetings and do things that are important to and for me and I think that's the main advantage of jumping through all the hoops to set it up in the first place!

Health and Social Care...
We had a paper at our last meeting - HSCP (Health and Social Care Partnership) on carers and short breaks and the new carers support plan and as people find out more about it and things are agreed with carers - isn't it just great that the carer rep is able to be fully involved as SDS (Self Directed Support) is already in place - isn't that how it should be everywhere? I know it isn't but it should be!

I still feel it's only by truly working together we can really change things for carers and I guess that's why I try to keep my pledge and make sure carers voices are heard!
Keep strong!
Maz x

Sunday, 10 March 2019

Blogging, caring, surviving & SDS too

Hi guys, it's been a while since I've blogged, things have changed but I'm pretty much ok!
Things got complicated, I got ill, Coo stayed much the same and I took on more responsiblity with supporting my dad...phew!
Who carers for the carer?
Well, the short answer is usually nobody rushes in to pick up the care load when you - the carer - is ill and that is pretty much an awful position to be in - we've been there before and it's no fun that's for sure but this time it was different!
Our SDS (Self Directed Support) kicked in pretty much seamlessly, Looby came to stay for a few days while I recovered (I had a chest infection that didn't go and kicked off the rheumatoid issues!). What a difference it made to concentrate on getting better and not on worrying about just how we'd cope and I'd keep on caring for Coo. I just hope other carers give SDS a chance as when it works well, it can be life changingly good!
While things have been so busy and stressed these last few months, I've stayed in contact with my local carer group.

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

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

Sunday, 16 September 2018

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
Maz x

Saturday, 24 March 2018

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!
Maz x

Friday, 23 March 2018

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 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.
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
Maz x