One battle ends another begins - ATOS...

Hi guys, ATOS are at the door!

No sooner have we sorted out our 'Bedroom Tax' struggle, now we have lurched right into another nightmare! The department of work and pensions have set the wheels of review in motion and ATOS are now at our door!

The forms to assess if Coo is fit to work, arrived a week ago, I can put it off no longer and have now started to complete them - what a time consuming, depressing and demoralising job!

Coo struggles so with this side of his disability, the need to assess and examine every tiny detail and worst still, record it for all to see! For obvious reasons, we don't take the lid off the box and closely examine things often, it's just too painful, especially for Coo!

He doesn't cope well with this aspect at all, he's already struggling with the stress and anxiety effects this process brings  and he has a massive increase in seizure activity. Last night his seizures were so violent and coming so fast, every twenty minutes and in an attempt to calm things, I had no alternative but to sedate him. At least then around 4 a.m. thankfully we managed a couple of hours sleep. We both have been so exhausted, it's been such a very difficult day for us.

I've always had to take on the bulk of the work with the forms, it's just easier this way so I'll fill them in as best I can, clarify things with Coo, add in additional supporting information and just hope for the best!
It really shouldn't be this way for people who clearly have severe disabilities - there must be a better system! Honestly, by the time this process is completed, Coo and I will have had to struggle really hard to cope with his care needs and disability at home and we'll have had to navigate through some very troubled times too.
I wish our government knew just what they were doing to us - for that matter even cared - and all in the name of 'Welfare Reform' and at such high human cost for disabled people and their Carers!

I'm posting a rainbow picture as I really need it's calming influence...

I kinda like the idea of holding one in my hand.
I think it's soothing and I hope you find it soothing and calming too!
(((Hugs)))
Maz x

Thoughts on 'Bedroom Tax'...

Hi guys, just why does this worry me so much, that I use precious respite time, (a rare comodity)  and campaign to stop the 'Bedroom Tax'?

Well, firstly, it's so very wrong!

 For the last few months the media in our country, aided and abetted by our own government have mounted a campaign of their own against the poorest and most vulnerable members of our communities.
All people on benefits, working or not, have been pushed into the one category and a 'them and us' mentality has been fostered and encouraged!

Our communities have been encouraged by both government and the media, to adopt a derisory and divisionary stance, you're either a scroungers or a striver and...that's the pleasanter side of Britain's Welfare Reform.

What about Carers then?
I for one, object to being labelled - we'll call it 'Economically Inactive' - I hate the scrounger label!
Carers are not unemployed, they're very much employed, providing care around the clock for severly disabled family members. We're not economically inactive either as we're saving the NHS, tax payer and State, Billions every year!

If we could downsize, we would! Our home has been adapted and we're not under-occupied, not in the real sense of the word! All rooms are being used by us and our over-night PA's.
They provide care for Coo and allow three precious nights undisturbed sleep for me every week, to enable me to keep caring the rest of the time!
This house supports the assessed needs for both Coo and I and it would cost thousands to adapt another property but more to the point, we need the space just to cope with the disability!

What choices do we have? - none!
We need to pay, we'll have to find the money - we must!
In our modern times - 'Heat or Eat' is so very much alive and that is the biggest shame of all!

I hope you're hanging on in there and managing to cope,
Stay strong!
(((hugs)))
Maz x

SDS Review...result!

Hi guys, we've had some provisional info. on the review.

Now that was quick!
I'm really pleased as when things drag on for ages, Coo gets really stressed - and I try to hide the fact I'm stressing too!
Thankfully, there's no need for stress this time, the provisional report was emailed yesterday and it looks like everything's going to be fine - woo hoo!
Social Services are happy with the way things have gone with the SDS (Self Directed Support) care package and their recomendations are for the Local Authority to continue funding so we'll be able to carry on as we have been for the last seven months - what a relief!

We really are so greatful for the support we have now. It took a long time to get here but it was really worth it - I'm so glad we persevered!

If you're stuck in the middle of the dreaded reviews or are still trying to get proper support to help, don't give up! It can work out well in the end!
Keep strong,
(((hugs)))
Maz x

Review time already...#9

Hi guys, Social Services have been in touch and it seems it's review time again!
Where has the time gone?
We've been using the SDS - Self Directed Support- care package since last July and just how have things been? Well, that's an easy one...it's been really great!

Coo and I have had more opportunities than ever before and for the first time in a long while, we've had really good support. It's brought some sunshine and we've honestly had some fun!


SDS has been a positive experience for us!
I've had more respite than ever before, the support and flexibility has meant both Coo and I have been able to make things really work for us. It's a long time since we felt so in control and that's been so very empowering!
Things people take for granted like days out, in the past, were always difficult for us. Coo would struggle with travel and once he started to tire, it was so very difficult to keep him awake and seizure free until we could return home. We both usually ended the day feeling very stressed and it kinda took the pleasure away - it was usually easier just to stay at home!

Having the option to go for a day out and then have a sleep-over too has made such a difference! It's meant we can both enjoy the day now, without worrying about how we're going to manage the return journey - what a difference!

The additional respite has made such an impact for me as I've managed to go places on my own and be involved with things that are important to me - like the Carers Parliament for one!

I used some of the additonal P.A. hours for Looby to come stay over with Coo, this allowed me to travel up to Edinburgh the night before and be well rested and able to fully contribute while I was there and Coo and I both managed some new experiences, we had some time away too ! We loved the Pandas at Edinburgh Zoo and had a wonderful time visiting the museums in Glasgow too!

I know most people do these kind of activities every day and without much planning or thought but it's not so for most Carers and having proper support can make all the difference in the world!
***and the SDS review?
Well, I know how we feel things have gone during the last seven months with SDS so...now we just have to wait and see if our Local Authority agree. I hope they feel it's the best way forward too and continue our funding!
Fingers (and toes) crossed things go ok!
(((hugs)))
Maz x

Happy new year 2013...

Hi guys and a...happy new year to all friends near and far!

We've survived the festive season and without  too many mishaps this time around. I've a feeling this could be a good year - oh, I do hope so!

The changes in routine over the last few days are beginning to kick in now.
Coo's been sleepy and seizing and just like this wee puppy here, he's been finding it difficult to keep awake so I've kinda given up, let him have a wee nap and joined you in blog-land for a wee while! lol

It really is a bit of a roller-coaster ride when you're a Carer isn't it? I mean, you never know from one day to the next just, exactly how things are going to be. Even when you're caring for someone with a fairly settled condition, you never know when it's going to kick in so you're always, (beneath the surface!) a little bit on edge and ready to spring into action whenever necessary - it just becomes a way of life for most Carers doesn't it?
I guess that's why we are so chuffed and happy, when things go well for wee change!
Good days sometimes seem as rare as pearls and they're always greatfully recieved, whenever they do pop up!

You know what?
I've learned not to analyze things too much these days, I kinda go with the flow and just enjoy the good day while it lasts!

I've a feeling tonight could be difficult too so we're batting down the hatches and digging out those hard hats yet again and in the mean time? We're just off to make a wee cuppa and then I think, we'll be off to bed!
Here's hoping for some more good days for us all.
(((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

Review news at last...

Hi Guys, the care package review is now done too so.... 
a great big woo hoo!

It's really a huge sigh of relief all around!
SDS - Self Directed Support- is a new system and we were a bit worried that, in the end, it wouldn't deliver the services we need. To be honest, I was beginning to think this review was stuck in reverse gear, then all of a sudden, it's done and dusted at last!

Coo and I can let go of all those worries about finance, safe in the knowledge the funding is here now to cover all the care costs and outcomes for the coming year.
We know, we are lucky to have such a supportive local authority that understands the issues, struggles and  really, the demands there are, dealing long term with such a difficult disability and we truly appreciate all the support they have given us.
God alone knows how we'd fare without it -  I still remember those dark days when Coo and I struggled on alone. Trust me, it was not a happy time for either of us that's for sure!

I'm just glad it's over and we can confidently move on now.

The forcast this week is for some sunshine and now, with this resolved, I'm sure I can forcast some sunshiney thoughts for us too!  lol
I'm feeling positive things are improving for Coo and I!
Happy Days!

I sure hope you're having some sunshiney thoughts where you are too and if you're stuck in review? Don't give up hope, sometimes things do work out for the best!
Keep strong,
(((hugs)))
Maz x

Enlightenment at last the RAS is over...

Hi guys, this time we have reached RAS enlightenment! and...
Thank goodness for that!

The Social Services resources allocation system or RAS for short, has calculated an estimated budget for Coo's care package. Now we just need the local authority to agree the funding and then? Well, we should be good to go! Woo hoo!

Coo is less stressed this week as the care plan review is nearing the final stages...all going well that is! It's been a long and difficult road at times but I think we are winning and I'm hopeful the budget will be approved and we can all start to move on.

It's a worry when things are under review as there's always the potential it will all go wrong and we won't get the funding to buy the care Coo and I need to cope with things. I have to say, in the past, we have been lucky, usually we don't have too many problems and the care plan is agreed pretty quickly. This time it's a little different as we've been moving onto a different system all together! It's also fair to say, it's not been without it's challenges either and at times we've both struggled.

I just hope all the additional stress and struggle has been worth it and this new system delivers a better quality of life for us both so fingers crossed and here's hoping!

We're coping ok and I hope your coping where you are too!
(((hugs)))
Maz x

Moods, meds and reviews...

Hi Guys, I think, I may have spoken too soon.
Coo's still having problems with moods and anger so things have not been easy!

I contacted his Epilepsy Nurse for some advice and it seems he's not alone! The AED (anti-epilepsy drug), he added into the mix 18 months ago, can sometimes have these emotional & behavioural side effects. It's not common but it does happen so...Lucky us!
***but what to do now?

Well, the newer drug helps his seizures a little so he's not too keen on changing the drug regime but neither of us is keen on keeping the mood swings! I can see where Coo is coming from, the drug does take the edge of things a little and that's got to be a major deciding factor!

We've taken the time, thought about things and then we started to think, maybe just maybe, the current, protracted care-package review we've been struggling with over the last few months has played some part! I know it's been stressful, Coo's struggled at times and so have I so I guess it's certainly possible!
I decided to up the anti and contact Social Services.
This has gone on long enough!
If it's effecting Coo's health and we're both feeling stressed, the review either needs to be completed quickly or dare I say it - left for yet another day!

I'm pleased with their response, things have now taken a massive leap forward and seem to be nearing an end - thank God for that!
I hope, once this process is over and Coo's stress levels go down, the sunshine will come back and we'll be back on an even keel!

Here's hoping things are more settled and sunny for us all soon!
(((Hugs)))
Maz x

On the up? I sure hope so...

Hi guys, things are back on the up again! Well, I hope they are!

Those nasty mood-swings are gone and things are getting back to normal, well, normal for us anyways and - thank God for that!
We've had a few days away for a wee change of scene - I thought it would be good for us so...we went to visit Looby and Steven.

I think spending some time with Looby and wee Jessica has done us both some good - she's a wee cracker! She's always smiling and I think it's infectious as when we're with her, she definately makes Coo and I smile too! lol

Things maybe on the up with our social services issues too. I really hope so! It's been a long and winding road with this care-package review, that's for sure!

It looks like we may, at last be, making some headway with this and I'm so relieved. Coo's been totally stressed throughout this process, he's not coped well and if I'm honest, I've not found it easy either so I'm kinda hoping it is coming to an end and sooner rather than later!

If things work out as planned, with this new system, we will both have a better quality of life and I guess that's why I've stuck with it and tried to keep Coo positive about things.

I really hope it works out and the additional hassle has been worth it! and if things don't go to plan?
Well...I think, we'll stay positive for now and just cross that bridge when we come to it!

I think things must be on the up right enough! The moods are gone, the care-package seems on the last leg and best of all? The sun has made a welcome return today! Yeah

Don't you find everything that little bit easier when the sun shines? I know I do so let's hope it stays with us for wee while!      

Happy Days!
I hope the sun's shinning for you too!
(((hugs)))
Maz x

Social Services Review take...6

Hi Guys, yes we're still stuck in review...for now!
Things are moving again, at least I think they are, and we're making some progress at last!
The story so far, it's... complicated!  lol
Well, it was always going to be wasn't it?
It's never easy moving to a new system and you know what they say...no pain no gain!

I'm feeling a bit more optomistic this week, I think we're now starting to make some real progress so as far as that goes it's...all good! On the down-side, Coo's not been so fortunate, he's been real poorly this week.
He's very sleepy and it's been difficult to keep him awake so we've had lot's of seizures yet again. The temperature and weather changes from one day to the next, hasn't helped things either! I mean, one day it's really sunny and hot and the next?

Well...it's all grey, overcast and rainy! It's fair to say, it's been pretty much a bit of a mixed bag weather-wise, well, here anyways!
I guess it's...
dig out your brolly and boots time yet again - woo hoo!

It's just as well, I like splashing about in puddles like a big kid isn't it! Now before you laugh, you should try it! Honestly - it's got a kind of therapeutic effect and it's probably really good for lowering your stress levels too - go on you know you want to!

Happy Days, from a splish-splashing Maz!
Even if the weather isn't quite what you'd like for June enjoy it anyhow!
(((hugs)))
Maz x

RAS Enlightened? err no...not yet!

Hi Guys - we have not reached RAS enlightenment after all!
Our journey has stalled this week!

It seems there's a problem with the way our budget has been calculated and it'll have to be fixed before we move on - a cause for worry? Mmm...not sure!

Unfortunately, Coo is back in stress-city!

He's worryied the budget will come back now at a lower level, and we won't be able to pay for the care we need! and...
How do I feel?
Well, I just hope the care budget doesn't reduce by too much, because as requested, I've already started to plan for the required care needs and outcomes for the coming year!

Let's hope God's with us and it's only a small hic-up and not a full blown review of things yet again!

Here's hoping it all works out, surely we couldn't be that unlucky...Could we? Anyway, our local authority are meeting to discuss things tomorrow so...fingers crossed!

Hope you're living stress free today where you are!
Well, as stress-free as you can be!
(((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

Old year...new year...

Hi Guys, new year is almost upon us!
Where has the year went? - It's time for a think...

You know, I used to get a bit stressed at the thought of a new year coming.
I used to worry about the things I said I'd do throughout the year 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

One 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 bearings 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

2010 hasn't been a bad year, well, not really!

We've had major trials and problems with doctors and meds and there's been lots of stress over that 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! Things are not brilliant by any means but they're a wee bit better than they were and that's a bonus in itself!

** With help, we made it all the way down to Getna and right through Looby & Stevens wedding! and what a brilliant day that was!

** I re-discovered lots of fun with crafts and hobbies from jam and fudge making to weaving and jewellery! Woo Hoo

** The garden was a bit of a refuge at times too - from peas and potatoes, to salad veg. and fruits - I had a ball, planting, growing, jamming and storing loads of goodies!


...so it's goodbye 2010! I'm feeling 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

Reflection on 2009...

Hi Guys, I found these questions on Carer, worker, mother, wife's blog and found them interesting so I've decided on a little 2009 reflection myself...

What was your biggest triumph in 2009?
Getting my Carer poems published with funding from NHS

What was the smartest decision you made in 2009?
To employ some time managment.

What one word best sums up and describes your 2009 experience?
Roller-coaster!LOL

What was the greatest lesson you learned in 2009?
If you try...sometimes, you get what you need!

What was the most loving service you performed in 2009?
Supported my mum, made her smile and shop! during her own health issues this year.

What is your biggest piece of unfinished business in 2009?
Carer poverty is still very much an unfinished issue.

What are you most happy about completing in 2009?
The march down the Royal mile and speaking at the parliament rally.

Who were the three people that had the greatest impact on your life in 2009?
*Coo, who constantly struggles and all with a smile that reminds me every day why I love him.
*My mum, she's battled with cancer this year and smiled on through tough times too.
*Looby - without her willingness to help, I'd never have any respite or sleep time!

What was the biggest risk you took in 2009?
Signing up for a local island sponsored walk - I didn't think I'd make it all the way around the island but I did...eventually!

What was the biggest surprise in 2009?
A wonderful gift of a relaxing spa day from Coo's mum!

What important relationship improved the most in 2009?
My Dad and I, we've always been close but he was so proud I spoke out for Carers at the Parliament!

What compliment would you liked to have received in 2009?
I like your Carer prose - very powerful...and I got it too from a work colleague!
What compliment would you liked to have given in 2009?
To Coo - you are everything, your star still shines brightly, you're still the one and I love you.

What else do you need to do or say to be complete with 2009?
I'm not sad 2009 has gone.
It's been a bit of a roller coaster ride for sure but we've both come out stronger than ever and still with a smile too!
Speaking of which...
Now, do these birds look like a pretty cool smile to you? LOL

Keep smiling and stay strong!
maz x

They're coming...oh no they're not!

Hi guys,
I guess I'll need more of them as Robert puts it 'diversionary tactics' - the social services cancelled today - so Coo was all upset for nothing Arrrrrg!

They'll come next week to review things instead.

Never mind, at least they called to cancel!
I've heard other Carers say in their experience, sometimes social services just don't turn up at all...shocking!

Onwards and upwards...hey-ho where's that salt dough! LOL

I feel a craft day coming on!
maz x

Social Services 'n' salt dough what a combo!

Hi Guys!
It's been a busy week!
Coo's been up 'n' down like a yoyo, his moods are all over the place and today he has the tell-tale rash that means there's yet again something wrong with his bloods!
We went to get them done today so by Wednesday, we will know for sure.

Mean while - (as if we don't have enough in added stresses!) - Social Services called yesterday to arrange a visit: they want to review Coo's care package.
Now, while I'm not overly concerned as care-wise things have not changed, Coo on the other hand, is in a bit of a state. He doesn't cope well with change and is concerned if they withdraw the help we have now, we'll struggle to cope.
He knows how tired and near burnout I was before!
I understand how he feels.

The Direct Payment care package we have currently, buys me two nights sleep, allows me to keep my one remaining work session and even a few hours out on a Saturday with my mum...shopping!

I know our Local Authority are struggling financially and just hope this isn't an attempt to cut this much needed support!
I have said previously, I don't know how I coped before without this help and would not want to go back to that place again but I'm not going to panic!
It won't help Coo any if he thinks I'm worried so I'm going to wait and see what happens - they're coming tomorrow.

Enough of the gloomy stuff...

In an attempt to take Coo's mind of the meeting, I decided to make some salt dough up to take to our group tonight - we run a wee group for adults with disabilities.

It was brilliant fun, they all had a ball making Christmas Trees, stars and baubles for their own tree at home.
Craft is so good!
Everybody gets in a sticky mess and somehow in the end something pretty is made and everyone's happy! LOL

Coo forgot the meeting tomorrow, we made an assortment of 'decorations' like these
and...there were lots of smiley faces around!

Job's a good'un!

maz x