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 

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