like anyone that posts on here, where do you even start.
I’m 51 years young and born to mediterranean immigrants. I’d love to tell you I have deep olive skin the body of a god and a mane of lethario dark locks, but you’d only be disappointed.
My partner was diagnosed with early onset Lewy Bodies and Parkinson’s back in 2015, although like many of us, we look back and realise that the signs were there probably a year or two earlier.
I was holding down a full time job and taking care of my mother as well during this period. To say things were difficult was an understatement.
In 2020 mu mother died and I had her repatriated to her family’s village abroad - due to covid I couldn’t travel with her. The last time I saw my mother was when I loaded her body into the back of the ambulance the day I found her dead in her chair following the terrible weekend of storms in February of that year.
In 2020 I also lost my job. I was an easy target for redundency in the great cullings of 2020.
I managed to find six months of paid work in 2021 for which I had to register as a ltd. company in order to be paid as the agency concerned would not deal with individuals directly. Following this contract I never managed to find another work from home contract due to the employment landscape changing and hybrid working becoming the norm.
I told Guildford Council at the time, that I would be moving back into the family home when the probate was finished - I was my partner’s carer now and I often use the place to just go and sit down and stare at a wall when I get a chance. The house my partner lives in has subsidence, and it was always our intention to sell up and move to my old mum’s place as her insurance company denied all culpability or responsibility for the subsidence repair, so we were stuffed, as any new insurer just batted it off to the previous one as it was first reported on someone else’s watch.
Guildford council now will not accept that I am looking after someone else as an exemption and use the excuse that I inherited the property rather than was living in it, and thus no exemption could be applied for.
In classing it as an unoccupied sencond home they have charge for three years of full council tax plus a fifty percent rich bloke levy, demanding that I prove to them that I’m living there despite me telling them my situation.
I applied for carers allowance in early 2021 and made the fateful mistake of being honest and told the carers allowance that I was going to be working for 6 months. It was at this point that I realised that you can’t press pause and once you stop you’ll be pulling teeth trying to get that door open again.
I have not had any income since january 2021, ringing carers allowance they said that they had cancelled due to me findinf work, only to find the notification that I had ended my 6 month contract.
Now I am being told that as a director of a ltd company I have no entitlements.
Honestly I’ve lost the will to live with that lot and have just been drawing down and nearly coming to an end of my life savings that have been built up over 30 years.
We have recently had a CHC care review with a safeguarding placed on the local council, who passed the buck on to me as if the package arranged by them was my problem Natirally I’ve fought back and thrown it all back in their court.
I’ve not had any respite in 8 years and since lockdown have worked unpaid to the tune of over 900 hours as the care agency told me that they were short staffed and could I cover for double up calls - which as you can imagine impacted on my ability to find work.
During the chc review it cane to light that during covid the care agency manager had written in her notes that I had declined all double up calls and was happy to do them myself!
Essentially since lockdown I’d been screaming why have my double up calls not been reinstated, and the care agency were saying what’s he on about, it’s in the notes he turned them down! Needless to say I’m raging.
The agency is poor, and their care plan is structured around me doing everything for her. I don’t begrudge it, after all I made her a promise I’d always take care of her no matter what, and she is now all care, not even having the capacity to scratch her nose or talk - she’s totally locked in and is permanently on a profiling mattress and hospital bed.
I enquired about being paid to look after her, and was told no, apply for carers allowance, who in turn have told me that I’m not entitled to anything, and perhaps talk to the council, who have said that I owe them 8.5k in council tax as I don’t live in a house and that and I quote, my “unfirtunate situation you find yourself in” is none of their concern and not eligible for exemption - however in their infinite generosity they are willing to help me suggest a payment plan.
I’d hoped that a lib dem stronghold would show clemency given how much noise ed davey makes about his carer credentials. I was sorely disappointed. Rules is rules so it would seem, and especially so in a council that’s near bankruptcy.
She’s not negotiable. The social services answer to everything is put her in a home or get a live in carer - er no. I didn’t want to be in this situation anymore than they did - but I’m not about to bin her off to make my life and their finances easier.
And that’s the rub isn’t it. The state won’t pay me a salary to look after her but they’ll give an agency over 130k to provide care. Those that can work the system have enough benefits to be an equivalent of a 50k job and in so doing make a mockery of those of us who have genuine needs and have children who would love nothing moe than to not have a neurodiversity as opposed to wearing it like some badge of honour.
I’m in a state of limbo, I’m in a grey area that nobody’s rules seem to account for and all the while all I want is for someone to say yes, I understand let me help you. It seems the greatest lie told is that the state will be there for you when you need it most. It really isn’t.
I know that by the time she passes I’ll be a shattered husk of what I was, and if the skin hasn’t been played off my back I’ll be lucky, but she’s not negotiable - it’s the way I was raised and it’s the way I was programmed.
I don’t know how you do it people say…
I reply… you put one foot in front of the other and keep walking, when it’s over it’s over.
That and challenging people to live even a day in your shoes, trying to make them understand that your life is driven by routine and repetition, and that you watch the world go by through the bars of your window, living your life in a single room for the most part, and wanting so depserately for it all to end but dreading the day that it does, because you know from experience when they’ve been taken into hospital for something that nothing prepares you for the silence of an empty house, and that disassociated feeling of having so much time you don’t know what to do - you stare at a patch of wall only to realise three hours have gone by.
You wonder how you will integrate back into society when it’s over, go back to the world as the vietnam vets would say, and realised that you go into your own town centre as a tourist not a resident because so much has changed, or even worry about whether you’ll be able to rejoin society in a meaningful way and be able to make friends or a new relationship should the time come.
You feel like a swan at times, calm on the surface and paddling like mad under the water to keep all the plates spinning. You learn to only worry about things you can change. No point in wasting energy stressing or worrying about things you can’t. I doesn’t do you any favours in the long run.
But in these hardest of times, I know who my real friends are. That face that just shows up at the door uninvited and unannounced because they were passing and just wanted to see how you were…just because, where everyone else ran a mile, always finding some excuse as to why they couldn’t, and I know that I’ve more fingers on one hand than true friends in that respect.
I stopped believing in karma, the universe, divinity and all that rubbish a long time ago. I tried to use the pages of “the secret” as toilet paper after reading it but it was useless at that as well. I wanted to believe that good things happen to good people and that the universe looks after you, but then I woke up and realised it was morning. There’s no justice, there’s just us.
You pray for a cure so that future sufferers won’t ever have to deal with the way others will behave and treat them, You learn that society has so very little use and is so willing to discard people and things which it sees as unproductive or outside of the norm.
You scream when another person tells you “oh I won’t come in as I don’t think they’ll remember me…” but then follows it with how their friend has cancer and how they do their shopping for them - what do you want from me? blessing from the pope?
All said and done, I can’t say any of it hurts… I said yes to all of it after all. It’s what I signed up to and I’ll see it though till the end. It’s the promise I made her. All I pray for is the ability to keep those plates spinning.
Sorry for the long ramble… but if you’ve ot this far thanks for reading and persevering.