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 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 effectively...so we did...push I mean!
I truly feel it's only by working together we can really change things for carers!
Stay strong friends
((hugs))
Maz.

Carer and Cared for Roller-coaster ride, Royal adventures too...

Hi guys it's been a busy month since I last blogged and there's been some real highs and lows...
It's a bit like that Carer roller-coaster ride again...
Me...
My own health is still problematic at best, thank God we have our SDS - (Self Directed Support) budget in place! I've been using it for additional care hours to keep us ticking along while things are so unsettled and it seems at the moment I've more appointments than Coo and that's a big shift around for us!
Okay, the Rheumatoid Arthritis is a little bit better, well the swelling is still going down but the pain is still pretty much on the high side and I've developed some nasty side effects from the drugs so...things are changing again.
I'm moving from tablets to injections and I'm not quite sure how I feel about that and...to cap it all our beloved GP is retiring soon.
God knows how I feel about that too - he's got us through numerous medical muddles over the last twenty-five years and with a hug and a smile too!

I know there are other good doctors in our practice and we will be fine but we will miss him so much, I'm tearing up just thinking about it all!


Coo...
Meanwhile, Coo's taken a bit of a battering too this month, his drug level spiked way out the safe zone and things were dire back up around 20 odd seizures a night and totally shattered and struggling all the time. AEDs (Anti Epilepsy Drugs) reduced a little...effect? A lot! Things quickly spun out of control again and we were in a real struggle we couldn't find the middle ground - time for the Neuro!
He's a cool guy, very patient, listens to Coo and sorts a plan of action - we're still in the middle of this latest AED see-saw but I'm hopeful we're coming back on the up!

They've been pretty low points this month so time for a high point...
We've been Travelodge-ing it again! lol
We were invited to the Queen's Garden Party in Edinburgh last week so we were Edinburgh bound for a few days and here we both are at Holyrood Palace...

It was a bit touch and go, if we'd make it and a bit of a struggle getting things all sorted but we did and we had such a lovely time.
The rain stayed off, the food was tasty and the whole setting was stunning!
We managed a wee visit to Gladstone's Land on the Royal Mile and The Georgian House too - in fact we had a brilliant wee break away in our Capital City - I'm so glad we got to go as it's given us both a bit of a lift!

Stay strong friends, let's hope for some more settled times too!
(((hugs)))
Maz x

Carer Struggles, health and hassles...

Hi guys, it's been one heck of a week!
It's still a hard hat and flak jacket time here!
I've not posted much recently as my wrist problems from recent months have escalated!
The Carpal Tunnel Syndrome diagnosis still stands but one top of that, last week my GP diagnosed De Quervains Syndrome too so I had a cortisone injection to try and help relieve things a little.

This week my long awaited appointment with the surgeon finally arrived - (I was refered in June!) - so just how did it go? Well, ok in some respects but not so in others. While the Carpal Tunnel issue is present, he will wait for further nerve conduction tests done in Glasgow before he proceeds - fine but he's thrown another diagnosis into the mix - In his opinion, my wrist is too swollen to be Carpal tunnel and De Quervains alone and looks more like Rheumatoid Arthritis. He took some blood tests and has now referred me to a Rheumatologist so yet again...we wait!
Meanwhile the caring continues!
Coo's stressed and poorly, I'm now stressed and poorly and we're caught in bit of a vicious circle! I had hope for some sight of an end or even a way forward with this and I'd kinda pinned my hopes on my visit with the surgeon yesterday. I guess, sometimes, things really just don't go to plan!
This raises the question...
Just what does happen when the Carer is ill? 

I'm finding that very little priority - if any- is given to Carers, even though they are needed to provide ongoing care for another person and usually with little support!
It's just not good enough and we really need to work on this!
I will be ok , if things deteriorate I will use the contingency funding within our SDS (Self Directed Support) Care Package, to pay for more support but other Carers are not so fortunate and if I'm kinda struggling, just how do they manage?

Stay strong friends as will I!
((hugs))
Maz x

Coping, stressing and finding a way...

Hi guys, I've been dreading the next few weeks arriving and here they are upon us!
Baby Jessie's surgery is fast approaching and it's been a struggle. We have a seizure increase again and Coo's been so very poorly this week. If I'm honest, it's not really surprising, the week before Jessie's last surgery, was just the same. 
Stress is a major trigger for Coo and always results in increased seizure activity and a bit of a struggle but the rescue meds (Midazolam) are in place and we're coping.

What to do?
Well, we could stay home and hole up and try to ride things out - we've done that before...often! or we could try to diffuse things a little with a change of scene and hope they will settle a little.

I chose to opt for the latter this time and decided to book a couple of tickets to a show in the Kings Theatre Glasgow  Coo is quite comfortable visiting there now so it's a good choice and with a stop over at the Travelodge, it should be managable!

Everything you do, if you have disabilities, needs additional planning, things able bodied people just take for granted need careful planning! You always gotta stay one step ahead and have an answer to all the 'what if's' but one thing I've learned is...if you get bogged down in all the negatives you never manage to soar with the positive things in life anymore!

I guess we all find a way, we have to...there's a big difference between existing and living!

Our SDS (Self Directed Support), has really helped us find the positives again and that's been the most valuable lesson of all!

 

 

Why was I so afraid to make the switch and try directing our own support? I guess we all worry about the unknown and don't want to risk what little support we have, incase it all goes wrong!

Looking back, it really was the best decision, scary at the time but so very worth it in the end!
Don't be afraid of SDS if you get the chance to try it, reach out and grab with both hands!
(((hugs)))
Maz x

Carers, influence and Local Authority...

Hi guys, I've been our visiting with my Local Authority yet again.

Remember I posted about the councils plans for a new community Portal. How they wanted Carers and service users to tell them just what information they really need to be in there?
Well, basically it's a one-stop-information-shop and people will find information on how they can use their DP (Direct Payments) and SDS (self directed support), budgets too - things are really coming together now! 


Carers, service users and the local community, will be able to access this resource and just find out what's going on in the community.
I think the most exciting thing for Carers, is the ability to access information on services, respite and even what activities are available in our area - just what really is out there!

I'm quite excited about this project!
I've always felt, if people knew just what is available on their doorstep maybe, just maybe, they'd be able to live a fuller life, with more opportunities and chances and not be like this wee hamster stuck inside looking out instead of having a wee go at things for themselves!

I really do feel this new resource has the potential to improve things, particularly for Carers. If they can identify some respite areas, maybe something the person they care for would like to try or attend for a few hours, it could effectively give them a little respite and some much needed time for themselves.
I actually think this could really be so be very good!
(((hugs)))
Maz x

A look back over 2012...

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

I used to get a bit stressed at the thought of a new year coming, 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 it's 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!
While 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! lol

Looking back, we've been on a bit of a journey this last year.
2012 hasn't been a bad year, it's been a good one...really!
We've had some problems with meds and side effects and the seizure level's still really high at around 250 a month but we're managing! There's been lots of stress but other things have buoyed us up too!

** Coo's no worse and not nearly as bad as the dreadful 30 siezures a day all through 2007 - 8 and most of 2009! 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!

Over the last year, we've switched to a SDS (Self Directed Support) care package and it's made such a difference! I've blogged about some of the doors this has opened for Coo and I.
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, we've managed to have a wee holiday and some time out with some days away too but by far the most fun we've had is with the two cycles we bought!
Who knew we'd enjoy cycling so much! lol
When Coo's well enough (and weather has allowed us!), we've managed to get out for a wee while in the fresh air. Coo's had lots of problems with infection and high/low white cells for the last few months and usually that would mean, avoid crowds and stay home but...not this time,  we managed a wee while out on our bikes in the fresh air and felt the benefit for it too!

I'm still having fun with crafts and in the garden too although my tomato growing was severely hampered this summer as we had very little sunshine! boo! hiss!

**The main three highlights of 2012?
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!
There's a ways to go, that is true but slowly, things are beginning to change and for the better!

**Another highlight is our wee holiday!
After so many years I managed to go with Coo on a proper holiday! What a wonderful experience this was for us both and without the next 2012 highlight (our SDS package), this would have remained an out of reach dream for both of us!

**The other main highlight moving to SDS?
It has to be the change! Well the push even ('cause we were scared to risk the support we had!), to move over to SDS! Gosh that was a good move! why was I worried?
I guess it was fear of the unknown and risking the help we already had - what if they said no also the re-assessments and the stress - it was the devil to set-up but has since proved it's weight in gold!

...so it's almost goodbye 2012! I have to say, I'm feeling more supported and in a happier place than I've been in a long time and I'll remember 2012 as being one of the good years!
That said, I'm happy and optomistic about the new year ahead!

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

(((hugs)))
Maz x

Respite! A few days away...

Hi guys, we've been away for a few days.

We travelled up to Edinburgh for a wee break, a wee change of scene for Coo and I! It had been touch-and-go all week if we'd make it as Coo's blood results are still erratic but we decided to take a chance and set off anyway and...I'm glad we did!

We have had such fun this trip! We went to the Zoo  and visited with...The Panda's!

A wee word on Edinburgh's lovely Giant Panda's...

On Sunday 4 December 2011 two Giant Pandas on a 10 year loan from China, arrived at Edinburgh Zoo and quickly settled into their new home.

The female, Tian Tian was born on 24 August 2003 and her name translates to 'Sweetie' in Chinese. She has previously given birth to twins however she has not bred with the male panda Yang Guang . She is described as having a mischievous nature and being quite fussy when it comes to bamboo.

The male, Yang Guang was born 10 days earlier on 14 August 2003 and his name means 'sunshine'. He is described as a good-natured gentle giant by his keepers.
It doesn't cost any extra to see the Panda's as  it's included with the normal ticket price but you need to book a panda viewing time as it can get really busy at times!

Edinburgh Zoo really is a great day out and the Panda's...Well, they were just brilliant!

As usual while we're away from home, we stayed over at the Travelodge . At the Central one, Coo feels comfortable here and we like the fact it's a wee turn off the Royal Mile and right in the heart of all the places visitors want to see! We had a comfy, cosy stay and after a full day wandering around the Zoo and a quick bite to eat, we were glad of the cosy room and comfy bed!

We visited the winter festival markets and wandered around the old town too and as we'd booked an exra night we even managed to squeeze in a visit to the Camera Oscura!  - What a great place!



The Camera views are brilliant but there's so much more! From holograms and puzzles to hands on curiosities and fun things to see and do - We loved it! lol

I'm glad our SDS (Self Directed Support care package), allows us to really get some quality time away. It was always so very difficult before. We just couldn't afford the hassles and problems that come with Coo and travelling any distance. He would be sleepy and irritable before the day was through and it became a logistical nightmare and financially unaffordable to take two nights away just so we could visit somewhere for a few hours and then risk seizures on the way home as we just didn't have the finances to stay over. In the end, we just didn't go and looking back, our quality of life really was non-existent.
How things have changed!  - The SDS has made things we dreamed of possible!
We know we're lucky to have such support and are truly greatful for all the positive changes we now have and only hope all Carers soon have the same chances and support in place!

It really was a fun few days away and has given us both a great boost. Coo's been really sleepy since we got back but we both had a whale of a time and it was worth it! lol
We really had fun and I hope you're having some fun where you are too!
(((hugs)))
Maz x

Christmas Shopping...

Hi guys, it's that time of year...again!

When the advent calendar gets all filled with sweeties and popped on the wall, I can deny it no longer...it's Christmas shopping time! lol

I kinda like the hustle and bustle of department store shopping! All the Christmas twinkle and sparkle too but...I don't like the queue's that usually go along with the annual Christmas shopping spree!
I usually try to get things done and dusted by now but with Coo's low white cell saga and our having to avoid crowded places this last month, I'm now running behind with things a little...

Enter Mum!
She loves to shop and knows where all the cool bargains are too! lol
It's decided, Coo's out ( he say's that's a result - for him!) - it's just too crowded and risky - the last thing we want right now is another infection so Looby will P.A. and come keep him company and Mum and I will hit the shops!

Wish us luck guys!
If it's a good day, we could get it all sorted and be sat in a lovely tea-shop eating cake by three! lol

I hope you're doing ok and getting things all sorted too!
(((hugs)))
Maz x

Respite and together too...

Hi Guys, we've been on a respite break together!

How great is that!
What a change the Direct Payment and new SDS (self directed support) care package has made.
This is the first time ever, we've been given the option to use some of our respite funding to take some time away together and it was brilliant fun!

Coo has not been abroad in almost fifteen years. Due to all the seizure activity, it was always just too expensive to insure him to travel so effectively, we've just had to stay at home...not this time though, the times they are a changing! lol

Picking a destination?

Well, somewhere definately in Europe as it's short flights! and it must be warm and sunny, with a nice pool and not too far from the beach would be good too!

We decided on Salou in Spain...

...and it was a good choice!

Lovely beaches, good hotel and glorious sunshine - what a bonus and what a great time we had!

Coo didn't have any more seizures than usual and so long as I was careful to keep him awake as much as possible during the day the levels were manageable. When we went out, I made sure we were back at the hotel each afternoon so Coo could sleep and I caught some sun with a wee cuppa sitting on the balcony - peaceful bliss each day!

I know it's not everyone's idea of a holiday, a bag full of meds, no alcohol, sleep periods through the daytime and early to bed but it was just what Coo and I needed most! A complete change of scene and some carefree time out!
We've both come back feeling a lot more relaxed and less stressed and so greatful for the SDS funding that enabled us both to recharge our batteries!

Back to the grind though! Flu jabs and the usual bloods were awaiting our return!

Don't be afraid of SDS if it comes your way!
It is now showing a significant improvement in quality of life for both of us so...if it's offered, reach out, grab it with both hands and make it work for you!

(((hugs)))
A sunny, smooth and very relaxed Maz x

Carers group...

Hi guys, my wee Carer group are meeting tomorrow.
It's always good to spend time with other Carers don't you think?

Just what's on the horizon for us this time?

Well, another Carer is coming to speak with me about our SDS - our new care-package set-up. She's considering going with the more personalised way of providing care for her family and needs some more info. before taking things further.
It can be scary going with SDS or setting up a Direct Payment for the first time and I guess other Carers who have been there and bought the T-shirt, are the ones to ask how it really is aren't they!

Here, there seems to be some money from the NHS available surrounding Carers and nutrition so there's a food worker coming along tomorrow too! We'll see how this could fit in with our group, maybe some cooking on a budget? or healthy alternatives? Who knows, I think we'll just see what they can offer and take it from there!

Sometimes it's just the chance to have a cuppa and a wee chat, even just offering a wee bit of support to one another and kinda checking in to make sure we're all still surviving and nobody's in meltdown this month!

I hope you're enjoying a wee cuppa where you are too!

Chin up and keep strong!
(((hugs)))
Maz x

Time out days...

Hi Guys, it's been fun today!

Coo had some time out with Stevie - golfing what else!
When he's well enough, Coo likes to get out on the course for a wee while so while the boys went out to play Looby, Mum and I were what are commonly known as... 'ladies what lunch'! lol

It's good to have some free time to wander around and linger over a wee cuppa sometimes isn't it! It's the simple things that most people just take for granted as part of every day life, that Carers miss so much and find so precious whenever they do get the chance  - I know I do!

The new SDS care-package still seems to be going well!
I'm relieved to say, after the initial RAS (resource allocation system) hassles, there's been no further hic-ups so far! I'm still confident it really was the right way to go and the additional flexible funding is starting to make a difference for us.
We've had some benefits already, some time out and access to respite too but I think the main benefit I've found so far, is the lessening of stress that comes from just knowing the funding is there to draw upon when we need it and that's a very different feeling from what we've been used to for such a very long time!

I really feel this SDS personalised way of providing care and support has real potential to improve the quality of life for Carers and can't wait till they roll it for everyone!

We're doing ok and hope you're good where you are too!
(((hugs)))
Maz x

Respite...

Hi guys, I've been away for a few days respite - woo hoo!

Mum and I usually go away for a few days at this time of year to Blackpool! It just so happens that last weekend was the big Blackpool illumination switch on and...we were there! lol

The sun shone during the day and the lights shine all night - how cool is that! lol

We stayed in the Royal Seabank Hotel again and it didn't disappoint! We had brilliant meals, friendly staff, a lovely room with a real cosy bed and (for me!) best of all...lots and lots of sleep! lol

Most peoples idea of holidays is to let off some steam and stay up late but in my position it's kinda the opposite! lol
On my holiday, I like to potter around at leisure, go where and when I fancy, have lots of tea and cake and...sleep...usually as much as I can! lol

Never the less, I shopped till I dropped, lingered cake-eating in tea-shops and slept like a baby all weekend and it was great!
Thank goodness for our Direct Payment!
It pays for the replacement care from Looby, while I get a rest and honestly, I'd now be so very lost without it! I still remember the times when I was crying out for a break and had no support and thank God those days have truly gone.

In reality, the D.P. means, I now can have a complete break away and a good rest too as I know Coo will be just fine when Looby takes over! By all accounts, everything went well while I was gone, Coo and Looby enjoyed some days out too and I've come back nice and relaxed so...jobs a good 'un! lol

I'm home now and well rested and I hope you're having a bit of an easier time where you are too!
(((hugs)))
Maz x

Carers Parliament...

Hi guys, guess what? I'm going to Scotlands first ever Carers Parliament!

It will be held in the Scottish Parliament in Edinburgh on the first of October and Carers will get a chance to pose questions to ministers. It's going to be televised on the Parliament Channel too so it should be good!

Having had such a positive experience so far, first with our Direct Payments and more recently with our SDS personalisation care package, my question is...

***When will we see the promised Direct Payment for Carers in their own right? This funding will enable Carers to purchase much needed support and respite and this alone could make such a massive difference! A wee bit of additional funding can relieve a lot of pressure and make everything just that little bit easier to manage!

It'll be interesting to see what other Carers ask and more importantly what the ministers answer will be!
I've time to submit some other questions too so please leave a comment if you've a question you'd like posed on the day!

I honestly think it's only by working together and supporting days like this, even if they only succeed in raising awareness of Carer issues, that Carers will ever really get the support they need!

Lastly, if you are one of the lucky ones who are there on the day maybe I'll see you!
(((hugs)))
Maz x

St Swithin...

Hi guys, Good old Saint Swithin was way off this time!
It was dry on his feast day so we had a fighting chance and I was hopeful but...no!
It's rained and rained and rained this week, we're practically washed out! lol

Never mind, the welly boots and brolly has been well used this summer! lol

I got drenched nipping down the garden for some strawberries earlier! Although I have to say...
It was worth it!
The wee alpine ones taste lovely and  best of all...there's millions of 'em out there so...woo hoo!

Just how are things growing where you are?
Here everything is really late this year!
My tomatoes are still non-existent! The plants are healthy and strong and the buds are coming out now but by this time last year, I was already munching them with salad! I guess we really haven't had enough sunshine at all.
I think they're on a go slow! lol

Let's hope August brings some sunshine or my wee tangy toms will all still be green and only any good for the chutney pan!

Coo's moods have settled now the Social Services review is over and thank God for that! I was really worried about him as things were getting difficult to manage. I mean, more moods and upsets for Coo, mean yet more seizures and it becomes a bit of a vicious circle!
He's bouncing back again now so yet another crisis has been averted and that's the important thing!

Now things are settling and Coo's more like his old self, we can take our time and plan what we really want to do with our additional budget.
It's a long time since we thought of such things and it's quite exciting really but...what to do!

Maybe some fun activities, some days out, a wee holiday or...
a combination of all three!
Who knows but whatever we decide let's hope the sun shines for us. One things for sure, it'll be an exciting time this year - Coo and I have not really had the chance to get out and about much and this new self-directed-support, managing your own care and activities could make a real difference for us!

I do hope you're having some sunshine where you are  or at the very least some sunshiney thoughts!
(((hugs)))
Maz x

Review take 4...

Hi Guys, things are a bit more positive this week!

We have reached RAS enlightenment!

In other words...

The Resource Allocation System part of the assessment is over!
Basically, they've run the figures and then decided on a suitable budget for us! Woo hoo!

What now? Well, we move to the next step - the Support plan!
This is a pilot scheme so it's all new for us too. It'll be a big learning curve but I think, it's really about working out how to spend the budget and get the best outcomes and that we can do! I mean, who knows best what will work for us than...us! lol

This new personalisation way, means the services Coo and I receive, will be more in keeping with what we really need. The care-package is a given - we need that and it's never been in dispute but the diffence with this new system is, there's options and choice to flexibily use the remainder of the budget to improve our lives! Woo hoo! Just how cool is that!

I'm hoping this new system delivers as expected, it could make such a massive difference to peoples lives!
It really has the potential to be so very empowering and positive!

I'll keep you posted on our journey!
(((hugs)))
Maz x

Review take 3...

Hi guys, we're still stuck in review!

The worker is very nice and she's an O.T. (occupational therapist), which always helps when describing physical disability! The main problem is the paperwork with the new system. It's not so nice and things have been problematic at best. Coo's stressed, I'm stressed and there's little movement this week...Grrrrrrrr!

I'm hoping things are starting to move now but the new system doesn't seem to fully take account of complex conditions like Coo's and it's been  a bit difficult to assess and agree, the carepackage of support we really need!



I feel the main problem has been the way the RAS - resourse allocation system - calculates the care budget. I mean, there's no provision for a disability like Coo's where a 'waking service' is needed to keep them safe. It offers either a sitting service or a sleep-over and our current service is neither!
Our situation means, we need someone to be awake, to take over from me on my two nights off a week!
They don't sleep or sit and watch either so offering a sitter or sleep-over service is not appropriate!

Any P.A. we have, has to monitor, record and cope with all the seizures and personal care continually throughout the night and it's not an easy job - I know!

I'm still hopeful this issue can be resolved soon and we can at least start to move on!
I'm keeping my fingers (and toes!) crossed and hoping, it won't be too long now!

Wish us luck - I've a feeling we're going to need it! lol
((( Hugs)))
Maz x

Social Services Review take 2...

Hi guys, we've reached the next stage of review - welcome to the world of... RAS!

For those who have not yet embarked on this path, that's the Resources Allocation System.
It's where your needs are assessed and quantified, well, as best they can be! and  then, an overall figure is reached regarding the care you are going to need and (more importantly) - the finance required to buy it!

Remember the old game shows? Where points make prizes? Well...welcome to RAS!
It's a bit of a crude way of describing the process, but in my view, it's also a  fairly accurate one! The main thing to remember is to look very carefully at your situation and the care you really need! It's not a time to be shy or worry about your dignity too much as every answer recorded affects the amount of your overall budget and ultimately how much 'Care' you can afford, to help you in your daily life!

Reviews are always stressfull. Coo really struggles with them as it's so very difficult to 'open the box' and really tell people just what it's like! He always feels really low afterwards, and I guess he's not alone in this. I mean, who can blame him, when it just looks so dreadful all written down on a form!

We've been lucky this time around, the social services person is also an O.T. (Occupational Therapist) and kinda understands the bigger picture of what things are really like. She asked pertinent questions without seeming to pry too much and Coo has coped  pretty well - thank Goodness!

Now, we just need to wait and see how the budget pans out and hope for what social services call a...positve outcome!

Wish us luck and if you're stuck in the review process too - keep your chin up!
(((hugs)))
Maz x

Welcome to Social Services Review...

Hi guys, it's review time!
Those with social services input already in their lives, will know exactly what that means and those who don't, well, here goes...

Every so often (usually annually if you're lucky!), all care and support, needs to be reviewed by Social Services. Basically, it's to see if you still need and qualify, for the help you were assessed as needing last time around - with me so far? Good! lol
It can be a bit of a mine-field but if your needs have stayed the same, things are usually fairly straight forward and signed off relatively quickly, but, if your health has deteriorated and you need more help - in our case more Personal Assistant hours added to our Direct Payment - well, you need to prove you really need the help and go through the whole assessment process again!

Lucky us! This is where we are now - welcome to...'Review!'

The new assessment forms are fairly bulky.
They're 35 pages long and as Coo's condition is complex that means, very little fits into those wee tick boxes so every comment and qualifying box needs to be used to explain the disability effects and that's no easy task!
This time, the form took around five hours to complete but it now holds a very detailed account of exactly what living with so poorly controlled Epilepsy, is really like on a daily basis for us both.

These forms are always difficult for Coo and I as we have to 'open the box' and really look hard at all the gory details! Worse still, record it all and share it with social services. Coo always finds it upsetting and difficult and that's totally understandable! But...to get the help we both need to continue and live with things, it's really the only way! I try to make things easier for Coo by, filling in as much as I can, then adding input from family and lastly, a read - through with Coo to add and change anything he's not happy with. I'm not sure how others manage this but it seems to work for us best this way!

We've completed the first step: the dreaded forms and we've also had a follow up meeting so hopefully things are on track now, so...so far so good!

I don't think we're alone in finding review time so stressful. I guess the threat of losing the little bit of support you already have, is always a real worry and I just hope things move along smoothly and we hear back from Social Services soon!

Wish us luck and if you're knee-deep in the dreaded review forms yourself - keep your chin up!
(((hugs))) always,
Maz x