Carers, Support, DWP & HSCP

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

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

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

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

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

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

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

((hugs))

Maz

Hi, Carers struggles again...

 Hi guys, it's been such a long time since I blogged but yet again we're back in the mids of another health crisis and I find myself drawn to blog it all out!

Struggles

Coo is poorly, he picked up another chest infection a few months ago and it's never really left! This has meant a crazy increase in his daily seizures - he has poorly controlled sleep seizures at the best of times and this latest infection has created a challenging spike! We were managing but the gradual decline just wouldn't let up. We've saw his Epilepsy nurse and tried upping the AED's (anti epilepsy drugs) for the seizure spike and antibiotics with varying success, any infection is problematic. Nothing is working. 

Things are difficult if Coo needs admitted to hospital as he needs a side room and me to stay with him as his unpredictable seizure activity can't be contained in a ward. We've been there and it's awful for all concerned so we avoid admissions like the plague! 

A few nights ago, things deteriorated so much, he was really struggling as was I so we had to get advice from NHS111 and ambulance services came out. They were great. They gave him a Nebuliser treatment as his oxygen levels were 89% and were very kind and patient. We explained why unless it was absolutely necessary we'd prefer to stay at home where he has seizure and wander alarms and we can cope better in the familiar surroundings and thankfully they listened. Coo's now added steroids, yet more antibiotics and now a Nebuliser to the mix. We're still battening down the hatches and battling through but I'm hopeful thing's have now peaked and tentatively optimistic we could be coming out the other side.

Who carers for the Carer?

Thankfully Coo has an SDS (Self Directed Support) care package in place so I no longer feel so alone when things get really scary for us both. I know help is there and I don't feel as if I'm drowning anymore but at times like these, in the quiet wee small hours, when sleep evades me I do worry for those carers still struggling on alone as I was for so many years. Just who carers for them?

Stay strong my friends as will I

((hugs)) Maz

A lifetime caring #CarersWeek

 Hi guys, it's such a long time since I blogged but #Carers Week has inspired me again.

I'm hoping by sharing our journey other carers will self identify and ask for help. Don't wait the 20 odd years I did, do it now!

I always hope as each year rolls by that things are improving for our carers, who are working hard day in and day out just keeping going and sometimes in the most difficult of circumstances. 

Caring long term...

I've been effectively caring for my whole adult life - I just didn't know it for the longest time. Like most carers I just got on with it and like the swan gliding along the water, nobody really saw or even knew how hard it really was frantically paddling underneath the surface just to keep it all going! Little sleep, snatched where I could, nursing and coping with multiple daily seizures, raising our kids in the midst of the chaos and trying desperately to make ends meet financially - a hard life and sadly one that resonates and is still all too common for many carers. 

Carer Pressures... 

The worst of times is three fold really, one is dealing with disabilities and serious health issues coming at you from all directions and usually all needing immediate attention, another is the business of 'caring' the forms, the DWP, the appointments, the phone calls and the stress and that's before you add in the essential care needed every day just to keep things going! The third is the feeling of not feeling validated and valued by society in general. I found this really difficult for the longest time especially when the press and government started to wage war on people living on benefits and call #carers like me economically inactive! Shame on them! Carers work harder than everyone else, they don't clock off at the end of the day. They don't have sick leave or paid holidays and most seldom have any respite either. It took me over twenty years to seek help and even then it was on the back of a horrendous crisis where Coo was having 30 seizures a day for a 6 months period. We were living in pyjamas and struggling on day after day until I just couldn't sustain things any more and went to social services. Thank God I did! Help was out there, we were listened too and we did get help!

Carers Week...

I used to cry at #carers week. Events and day trips were offered but I could never go! There was no replacement care and Coo just couldn't be left at all. Life was enclosed and small. Everything was stressful and tense all the time as we drifted between appointments, hospitals, clinics and home. It was such a difficult, dark time for us both in so many ways. Fast forward a few years and things changed, we had to hit rock bottom before we found any help but it was out there. Isn't it sad that we just didn't know! Why is that? We really need to reach out more, try and break down those barriers!

SDS (Self Directed Support)...

SDS has been a game changer for us. It's been running for a long time, first with Direct Payments and then the move over to SDS a more person centred approach and it is! Our care package and I say 'our' as we both benefit from the support it provides. Coo has Looby our P.A. and that means I can sleep during the week and get some proper rest as I know he's fine, she will deal with all the noise, mess, chaos and seizure activity and I'll come back fresher tomorrow so we can all live to fight another day!

Here we are a few years ago sharing some of our story

Please if you are caring long term and it's a lot, don't be afraid to look for help. There's so many negative stories out there but there is also help and support too so reach out!

Take care of you too

((hugs)) Maz 

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

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

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

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

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

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

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

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

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

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

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

Carers, life and isolation...

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

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

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

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

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

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

Stay strong and keep hanging on in there!

((hugs))

Maz x

Carers, COVID and keeping safe...

 Hi guys, we're still living quietly here, not isolating as such but being very tentative and really careful that's for sure!

There are very few places Coo and I now feel safe so we're mostly in Eglinton Park or at home these days. Don't get me wrong, over the years, we've been stuck at home for long periods of time before but this is different. Previously, we always had lot's of family popping in and out, running errands and staying for a chat or a cuppa most days.

This time, we were so worried over virus and infection as last time Coo had a bad infection things quickly escalated and he had a six month period with thirty seizures a day. It was an awful time neither of us want to repeat so we closed ranks and battened down the hatches to sit it out but this time, it was harder. I just didn't realise how much I need other people. 

I under estimated how hard it would be without the usual peer supports I've come to depend on. With family unable to visit and my Three Towns carer group, which has been up and running every two weeks for 15 years come rain or shine all gone, I've really struggled this time.

I've managed to keep in touch using Facebook or by phone but there's no real substitute for human contact and bonding over a wee cuppa and a chat is there!

I think we got hit with a bit of a double whammy, my Dad died one week and lockdown hit the next with it's enforced isolation and additional anxiety so we kinda became shut off from the outside world and just stayed home. Coo was poorly, he took my dad's death hard and his seizures spiked. He got anxious about infections and his seizures spiked, my rheumatoid flared and we got irritated at being shut in all the time and his seizures spiked...you getting the picture? Offt it was tough but we rode it out..kinda! I stopped all my meetings and took a time out. I didn't feel in the right head space to deal with other issues as we were kinda struggling dealing with our own. Gosh that sounds selfish and a bit of a pity party doesn't it! Our lives are still very cloistered and quiet but for our own sanity, we had to 'extend our household' and join with our daughters family, and our wee grand-babies or we'd otherwise have emotionally gone under. 

We eventually decided to start getting out tentatively. 

This week was wee Jessie's first Communion so we braved the church - I've been live streaming mass for months - everything was sanitised and distanced and different but we felt safe enough and we coped! 

It's my birthday today so we went out again, a favourite place up to The Dick Institute in Kilmarnock for a wee happy hour and again everything was sanitised and distanced so we both felt fine. It will take time to build back up confidence but we'll get there and as always we'll do it together!

In such difficult times, stay strong friends.

((hugs))

Maz x

Stay isolated? Covid the disability Carer dilemma...

Hi guys, things seem to be moving forward in dealing with Covid 19. Cafe's, pubs and some hospitality areas are open now and folk can carefully go out again or so it seems but it's very scary for those who've been shielded away for so long! 

Going out? is it safe? Questions, questions?

With every news report and update, more hot spots and pockets of infection are reported and it feels like one step forwards and another step back so...we're still isolating...mostly! We've been out in the car a few times had a wee cuppa  - it's like the old days of childhood, take a picnic and a cuppa and enjoy the peace and quiet but now it feels so different. It's not by choice, it's to ensure as minimal contact as possible with the outside world! I'm not sure I like this new way of living but Coo is still terrified of infection after the hell of aspiration pneumonia that left him with a COPD and asthma legacy and that's hard to get past especially as other places begin to lockdown again!

Changes...

Life has changed, especially for Carers and disabled people. Let's face it everyone is worried, factor in additional health conditions, life limiting issues and daily updates and stats on a deadly virus - it was never going to be easy for us was it but what to do? Continue to role with the punches, pick up the pieces and carry on - it's what carers have always done isn't it?

I'm coping mostly! Life is a challenge and we just muddle along through and find a way. Granted this time, the Covid virus has had a prolonged impact and still continues to cast it's shadow so it's been particularly difficult to sustain some positivity but we're still here and we're still going. Just like millions of other carers across our country, thankfully we're a hardy bunch!

School's returning...

Lot's of folks will be celebrating some form of normality returning as schools open up but my heart is filled with dread. After the prolonged period of enforced seclusion, we just got used to hugging our grand-babies again and I'm now dreading another prolonged isolation from them, whilst we wait and see if infection spikes or is it safe enough to continue contact? 

Spending some time with our wee grand babies over the last month has kept me sane and still connected to life and the outside world. I'm going to struggle to relinquish this again. I really hope I won't be back relegated to my seat on the drive, looking through the window. I know how awful that is, living life stuck inside with just glimpses of the busy world going on outside but it passed and this will too!

I really feel for carers who are struggling on alone at the moment. I remember just how difficult that was and hope and pray, things will start to improve for us all soon.

((hugs))

Maz x

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

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

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

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

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

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

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

Decisions, surgery, caring and coping...

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

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

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

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

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

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 so...here 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!
Struggles...
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!

...so 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!

(((hugs)))
Maz x

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.

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!

SDS...

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!
((hugs))
Maz x

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

Still caring, challenging and carrying on...

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

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

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

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

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

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

Keep strong as will I
((hugs))
Maz x

Caring magazine and us...

Hi guys just incase you missed it last time around...
I thought I'd share our big interview!
We were asked by Caring Magazine  - well I was, Coo just came along for the ride! lol
 Caring Magazine issue 46

It was originally going to be a wee piece about North Ayrshire's brilliant 'Carers Appreciation card'  and it is but it kinda took arms and legs and ended up covering a whole lot more and a few pages long...we're on pages 4 - 7 and with some happy pics included too!

SDS (Self directed support) has made such a difference for us, it helped open doors that were previously tightly closed. Time for respite both together and some time apart, time out for training and even time just to sleep and turn off from caring for just a little while, knowing things will be ok.

Help for carers is out there!
It's just knowing where to find and ultimately access it that's the tricky bit and by pushing and sharing information, we can all try and get a better deal for carers!
Keep strong friends as will I!
((Hugs))
Maz x

Back #stronger #sad still #caring...

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

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

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

#carers health caring coping and SDS....

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

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

Just who cares for the carer...

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

Caring...

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

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

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

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

DWP Stress and health hassles - the peace didn't last long!

Hi guys, what a mess this month has been!
Remember a few weeks back when I blogged about how our DWP hassles were over for a while at least? Well, the reprieve lasted four weeks exactly and we're back on that treadmill yet again!

ESA have come calling...Arrrrrgggghh!
Honestly and in the circumstances, what is the point of even more assessments and only weeks apart?  This must be costing a fortune in real terms processing costs and I'm less than impressed can you tell?

So just what has gone wrong?
Well, the issues are two-fold!
1. DWP don't share information the departments don't speak to one another is one issue and that needs resolving! The continual vicious circle of  DWP's making people relive their disability with frequent regularity, serves and achieves no positive purpose and has to stop - we're all getting wearier and sicker throughout this abysmal process!
- and the latest incompetent mess ...  
2. Our GP practice which is now directly managed by NHS Ayrshire & Arran and is mostly staffed with locum doctors, has not returned any and I mean -ANY- DWP paperwork since April!
The DWP's current health care assessors have confirmed an assessment is now imminent for Coo as the GP did not respond or return the necessary paperwork! Just how many patients have been failed here? How many have been put through additional stress and assessments unnecessarily? Totally unacceptable situation and all so avoidable!

Coo's stress levels are up and his seizure activity is way off the scale - we got a call from ADOC (our out of hours NHS services), his drug levels have spiked and things are difficult so I reckon the last thing we needed was another injection of yet more stress in the mix! - it's just not good enough!
Typical for Carers - it's all more work and more stress but it has to be done so I've contacted Dr Tyagi - (Coo's Neurologist), who's a great guy and always supportive so least we've got the difficult health bit sorted out, well, we've got a plan anyhow!
I've asked my Health & Social Care Partnership to try and improve this situation quickly and I've a phone consultation with our practice manager- this won't help us this time around but it hopefully should help other patients caught up in this right royal mess - when there are issues, we need to keep working together!

I often blog that we are all in the same boat so must take turns to paddle but it seems we've been paddling really hard this last few months Coo and I, dear God, we must surely be due a break from the oars soon!

Stay strong and keep paddling!
((hugs))
Maz x

PIP, Carers Week, SDS & IJB...

Hi guys, it's such a while since I blogged, my hands still hurt when typing and I've not found software that fully understands my Scottish twang...yet! lol

So what's been happening?
PIP...
Well, our hassles with DWP and PIP (personal independence payments) are over - well for a while at least! An assessor visited our home to save further disruption and upset for Coo and seemed to understand the issues of coping with such complex needs and thankfully, things went smoothly this time. It's such a relief it's finally over as we've both been so stressed with this process hanging over us for the last few months. Hopefully things will calm down a little now and we can get back to normal...well normal for us that is! lol

Carers Week...
Carers Week is easier for me to enjoy these days SDS (Self Directed Support) being in place makes the world of difference! Regardless of how Coo is feeling (within reason!) my plans seldom need to be cancelled and if I want to pop over to Irvine to the Carers Centre for a 'posh tea party' or a wander in the park it's ok...I can go and so I did!

North Ayrshire Carers Centre Irvine. (Facebook)

Here are some Three Towns Carers with two of our newly elected local Councillors Jean and Davina...they like a wee posh cuppa too!

Media Interview...
Look out for me in Caring Magazine next time! I gave an interview on North Ayrshire's Carers Appreciation card - it's a wee thank you for carers and among other things, gets them some discounts on local goods and services. The interview started out about our carer card and then grew arms and legs as I shared some of Coo and I's journey so it'll be interesting to see how it all comes out in the wash or the print for that matter! mega lols

IJB, Health and Social Care Partnership...

After all the recent changes, campaigning and elections, we welcomed new members and...it's all hands on deck and back to work for our IJB (Integrated Joint Board).
 
 Our new Carers Champion..

Councillor Christina Larsen is our new North Ayrshire Carers Champion and has joined us on the IJB so with new councillors and a champion who are carers themselves, we should have the best of chances in making sure carers voices are heard! I honestly feel, it's only by working together we can really achieve change for all carers!
Keep strong!
(((hugs)))
Maz x