Caring

It’s currently 12:45am, i’ve been awake since 7am, I fell asleep at 3am, so i’ve had 4 hours sleep.

I am utterly exhausted, so exhausted that I feel like i’m drunk, I cannot even go to bed yet.

I am disabled, at present the house is a mess, I currently am struggling to even stand up straight, I am in so much pain, and i’ve been sleeping on a sofa for 4 years. I’ve been told that my pain will not get better until I get a bed, which I cannot afford.

I am mentally and physically burnt out, my life is non stop caring. I get no time to myself, I cannot socialise, I cannot see friends,

I am sharing the living room with one of my autistic children, I don’t get any privacy, none. I have no help with my caring role, none, it’s just me by myself carrying the whole family.

I’m so tired and I just feel broken, i’m that exhausted that I can barely function.

4 years ago we asked for help because we were struggling with the children, it is only now i’ve had a carers assessment.

I’ve got 4 high needs children, 3 with autism and 3 with adhd, there is dyspraxia, physical neruological problems, extensive trauma, and a distrust amongst the children of professionals because of prior experience.

Gavin Jones job is not to make life better for the residents of Essex, it’s to make cuts for the benefit of the members so that the local authority has enough money. The amount of money they get from central government is actually not enough, but it’s a tory controlled local authority so there is nobody there shouting about how the local authority need more money, members don’t want to rock the boat, and in my experience, they don’t actually care about the residents.

Take Louise McKinlay, I asked her for help, she called me a liar and threatened me, yet she is currently on the warpath with the national grid because some of her richer constituents don’t want electricity pylons near their homes.

A child attempting suicide gets Louise McKinlay threatening the mother when she asks for help, worried your view might be spoilt, gets Louise McKinlay writing letters and going on the warpath for her precious residents. My problem is i’m not rich and unlikely to be a tory voter, so there is no benefit to her in helping me.

I have not had one single bit of help in the past four years to help me in my caring role.

Something else that ECC brag about, how much they do for carers, that isn’t true.

I asked for a carers assesment about two years ago and it was refused.

The one that i’ve just had I think I asked for back in November, so 7 months ago, the assessment was done in April and i’ve heard nothing yet.

I have no doubt that the social worker who has done the assessment wants to help me, she could see for herself how much i’m struggling, how exhausted I am, how I never have the time to do anything but care for the children, but she is limited by ECC.

If I get any help from the carers assessment i’m not expecting much, because in my experience with ECC they will always give you the smallest amount of help they possibly can, even if it doesn’t cover your needs, and then brag about it all over social media.

I saw so many carers week brag posts by ECC and by high up employees at ECC bragging about what they provide. Firstly, many carers get refused anything, with ECC saying they aren’t eligible, secondly, then the carer isn’t given enough help.

If I do get any help from the carers assessment, and I know that is a big if, ECC will use that in their stats and as part of their bragging that they are helping carers, of course there will be no mention of myself first having applied for an assessment 2 years ago and being refused, despite still providing the same level of care, and if I don’t get enough help to make a difference, that doesn’t matter because it still counts as help and thus to ECC it shows how brilliant they are.

Services are being cut everywhere, every ECC help we’ve had has been short term, one of the services one of my children is having at the moment is short term, and while it is helping them, there are only two sessions to go and it’s just not long enough, it needs to be a year, I think it’s been less than 4 months.

It’s not the social workers fault, they care, they are trying to help, but it’s hard when they aren’t given enough time to really help the person to change and make real differences to their life.

It’s the same with other services in Essex, mental health for instance, it’s very short term. 3 of my children need therapy that is long lasting to help them with the trauma they have suffered, i’m talking at least a year each, 6 sessions of counselling is not even long enough to start trusting a therapist by someone who has suffered trauma at the hands of professionals, let alone really get that person to open up and figure out a way forward.

We need a bigger house, we desperately need a bigger house, there are no council homes available that are big enough, so it doesn’t matter how many points we get awarded and what band we get put in, a house big enough for our needs only becomes available every few years, if that, and even then there will likely be someone else who has an urgent need to move who has been waiting longer. Cannot private rent as we are on benefits, and also homes that big just don’t come up for rent, even if they did we wouldn’t be able to relax knowing that at any time we may have to move again.

Buying a house is obviously impossible, so we are stuck here.

The conditions my children are living in are detrimental to their wellbeing, the same struggles that I described to Gabriel Lowrie when we met him for the first time still apply, and are worse than they were back then.

I am just so tired and exhausted, and while it is fulfilling, my children are amazing and watching them achieve what they do fills be with joy, even thinking about it gives me a warm fuzzy feeling, i’m so utterly exhausted that it sometimes feels like i’m going a bit crazy when i’ve been awake for an extended period of time.

Not to mention the pain i’m in, I am desperately trying to get a bed, but one of my children needs a bed, so they come first. Again, ECC show off about their essential living fund, but things like a bed for someone who is autistic and is sleeping on a broken mattress on the floor isn’t something that is essential, neither is a cooker for a family of 4 with the amount of disabilities going on with my family.

Apparently ECC thinks that a microwave is absolutely fine for my family’s sole source of cooked food. Obviously it’s not, obviously I couldn’t afford one, so I had to order one from a catalogue which will end up costing me twice as much. It’s expensive being poor.

It was in the rejection letter that the essential living fund is really just for homeless people and those coming out of prison and we aren’t in those categories, so not essential. They should have that front and centre when you apply so you don’t get your hopes up.

I’m happy with what I have in life, but i’m really really struggling, I have so much responsibility and i’m doing it without being rested. My last good nights sleep was about a year ago, when I spent the night at my mothers house, it’s impossible for me to do that again.

I don’t know why i’m writing this, i’m so exhausted that I cannot think straight and I can’t even go to bed yet and I got disturbed while writing this despite it being the early hours of the morning.

I’m just really hoping that the outcome of my carers assessment is something that helps. Respite care is out of the question after what happened with social care, one of my children has to know where i’m going, who with, when i’ll be back, and interrupts every phonecall to find out who i’m talking to because they are terrified of social care coming back and harming them again, so has the need to know that i’m not talking to them, and that I am coming back and they aren’t going to get taken away.

They had 6 sessions of counselling, they struggled to engage as they didn’t get to the point where they could let their guard down, and it didn’t help at all.

I love that child so much, today they have done x, y, and z, which really made me smile, we went on a walk together earlier and that was fun, they were talking incessantly about a, b, and c, which they are just so excited about. I’m grinning as I write this bit as kid is just so bloody awesome, not to mention that thing that child did that I bragged to professional 1 about, and professional 2, and absolutely everyone else, that was amazing. And what child did earlier on.

It’s also Tuesday so it’s now less than a week until that legal thing i’ve got going on, really not looking forward to that, very very nervous, i’ve never sworn an oath before and I feel very overwhelmed. That is related to what happened with social care..

However, not everyone acts how ECC and their employees act, so there is absolutely no need to share it on here, things were sorted to my satisfaction and there is absolutely no need to write about it as it’s not anyone’s business but those involved.

So not only do I have the day to day things that are involved with looking after my children, I still have the other things to deal with that are a part of real life, i’m just so tired and exhausted and i’m scared i’m going to get seriously ill because of it, but i’d still have to carry on because there isn’t another option.

I have to have an operation and i’m terrified, not so much for the operation as i’ll be asleep, but for the recovery time and they say i’ll have to spend a night in hospital which is not a good thing. I could sign myself out against medical advice, I do have form for that already, but my children are older now and would be worried about me if they knew I was only out of hospital so soon because I signed myself out.

I’ve just never seen the point of recovering in hospital when all you are doing is laying there when you could do the exact same thing at home. If you are in hospital because you are poorly, then it’s different, but with an operation you feel awake the moment they wake you up and all you are doing is laying there for a whole day.

I don’t see why I cannot do that at home, recovery should be not too bad, i’ll be in pain but as long as I don’t exert myself or do something really stupid, i’ll be okay, driving should be okay after a few days as long as I can turn my head, so I cannot understand why I can’t get out the same day

I have no idea why i’m writing this, it’s probably just a load of rambling nonsense written by someone who is very tired, it’s my blog so I can post what I want though.

My children are terrific though, they are strong as heck as well to have gone through what they went through and still be fighting, they don’t give up and i’m so proud of all of them.