Monday 5 June 2023

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 

Friday 31 December 2021

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!
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!

Thursday 18 March 2021

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'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!


Maz x

Wednesday 30 September 2020

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 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.


Maz x

Thursday 6 August 2020

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!
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.
Maz x

Saturday 18 July 2020

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

Hi guys, 2020 has been pretty awful for us but we're surviving...just!
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.
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!
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!
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.
Maz x

Friday 31 January 2020

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!
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
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
Maz x