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A Carers Thought's

right from the start, you were a thief, you stole my heart

Tag Archives: carer

So it’s been ages since I wrote and to be honest, everything has been going OK. Si is getting worse but that’s to be expected, his hands and arms are starting to give up due to being on the crutches full time and his mobility is much worse, he is on stronger medication and getting more depressed but we have been coping. Money hasn’t been an issue really and that has made a big difference.

Then this morning we received the first letter about pip. They claim they wrote to us two weeks  ago saying he had to begin a claim for it but we have received nothing, this means we only have two weeks to get a form, fill it in, obtain evidence etc. And so the stress, frustration and justification starts all over again. 

It’s so terrifying knowing we are probably going to lose the car, and his money. Anyone who doesn’t have a good understanding of this process and the dwp won’t understand this as they can see clearly he should be entitled. That’s simply not enough anymore. People are dying before being awarded it, people are being driven to suicide because of the strain put on you, and I’m so scared of how si will react if he doesn’t get awarded it and we have to go through the whole tribunal process again. I honestly do not know that we would survive it. 

On top of this we were planning to get married this year but I don’t think we can afford to make that commitment to no matter how cheaply we do it. I am just realising that this is going to be a continuous process for our entire lives. Every two years or so we are going to have to go through this. Every time you win a battle, they start planning for the next one and you can never relax. 

I’m at work in 5 and a half hours and can’t get to sleep for worrying.

The only way I can think of explaining it to someone who doesn’t have to go through this is if you were to turn up to work and your manager decided that every two years, whether there was a change in your work or not, they would assess you and decide whether you would get paid or not. They would decide which evidence and parts of your work counted towards the assessment and your behaviour and ethic would barely be recognised. Doesn’t sound fair or logical does it? Yet this is what many millions of disabled claimants go through on a regular basis. 

As well as this my dad has started fainting again due to drinking even more heavily and my mom is threatening to leave him. It feels like my life is turning to shit once again. 

I try so hard to stay positive, especially for si but it just feels like the whole world is against you sometimes. Anyways I had better try to sleep again. 

Things can only get better 🙂 

 

 

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Does anybody else get sick to death of saying this when in reality all you want to do is scream at the top of your lungs “NO I’M NOT OKAY, I’M KNACKERED, I HAVE A TO DO LIST LONGER THAN MY ARM, I AM WORKING THE EQUIVALENT OF TWO FULLTIME JOBS, I NEVER HAVE TIME/MONEY FOR MYSELF ANYMORE, I BARELY EVEN THINK ABOUT MYSELF ANYMORE, NONE OF YOU UNDERSTAND OR CONSIDER THE IMPACT THAT CARING HAS ON MY LIFE AND ON TOP OF ALL OF THIS I HAVE TO LISTEN YOUR BULLSHIT MOANING ABOUT COMPLETELY UNIMPORTANT THINGS”
But instead I contain myself, simply think these things and say “yea I’m fine thanks how are you”.
I wonder how much longer I will put the brave face on, how much longer till I finally snap and scream this into some poor unsuspecting persons face?!
The real trouble with somebody asking how you are is that few people genuinely care about the response. Contrary to what you may believe after reading my other posts(!), I hate moaning in real life, I hate showing any sign of weakness or that I am not coping. I genuinely find it hard to talk about the reality of my life particularly in work, I am probably shooting myself in the foot with this as maybe they would be more considerate and understanding if I opened up a bit more.
At the same time, I don’t want to be one of those people who is always moaning, ultimately, I don’t think I need to worry about this as much as I do, because genuinely, I don’t think my colleagues care or will ever truly get it.
When I almost cut my shifts to 4 instead of 5 last year, one of my fellow managers asked me why, I told him that it was to allow me to care for Si better, he huffed and said he wished he didn’t have to work so much.
Nobody would say these things to a mother or father and its basically a similar situation but no one would ever question their right to work less or ask why. This exchange demonstrated the sheer lack of understanding/compassion on their side.
Wow, I had more to say on this than I thought! Sorry for rambling on and please do comment, good or bad!
Thanks for reading,
Take care

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As I mentioned previously, I am a carer to my partner (Si) so I thought it only fair to give a little background on his condition, where we are now and where we are headed.

Si has a bad back. This instantly makes people say ‘I have a bad back’ ‘I know so and so and he has a bad back and he gets all this money but there’s nothing wrong with him really’ and other such rubbish. Whenever somebody asks what is wrong with him (despite it being none of their business) and we give them the simple answer above, this is the reply we constantly hear.

This is understandable as most people are likely to experience some form of backache or back problems during their lives but it is incredibly frustrating and we feel as though we are constantly defending ourselves. People can’t seem to grasp the notion that there is having a bit of backache after a long day and being completely disabled by the variety of problems someone like Si has.

So, where to begin?! Si has dehydrated discs, a herniated disc, arthritic growths on his spine which are pressing on the sciatic nerve running down his left leg, an old fracture to his coccyx that didn’t heal correctly, arthritis in his left hip and most likely arthritis in his hands and shoulders from using crutches. These are all degenerative conditions that will only get worse with time.

I’m sure we can both agree this is a little more than a bit of backache.

As soon as he stands his leg and back will begin spasming, this has recently spread to both legs showing a significant deterioration, this makes walking extremely painful and difficult. His left leg is very stiff nowadays, he can’t lift it more than about two inches, which makes even getting up a kerb very hard and makes it a tripping hazard.

The spasming can also make it very hard for him to get to the toilet in time, particularly if he has waited till the last minute to go.

He can no longer bend to wash himself or dress himself. He can’t cook or clean, finding it very hard to stand for long periods of time.

His life basically consists of sitting/lying on the bed/sofa, taking his medication (currently 28 tablets per day and morphine as required), asking me for food/clothes/help and most of all pain.

It is no wonder that with the stress of the tribunal, finding out that his consultant can do no more for him and that he is condemned to this “life”, he is now considered depressed. When we found out that we would have to go to a tribunal, he was on the verge of suicide (literally, he had planned it down to the last detail). I had no idea what I would find when I walked in after work, I have never been so scared in all my life.

This may sound dramatic to some people but he felt as though there were no other option. He felt betrayed by the government, they had thrown him on the scrapheap at the same time as saying ‘there’s nothing wrong with you, you lazy scumbag’. At least that was how it sounded to him. He was in the dark fogs of depression and genuinely could not understand why he was in this position. I have never seen him cry so much in all my life and I hope I never will again. It was truly heartbreaking.

Anyway I digress, sorry! The good news is that he is now seeing a psychiatrist and gets on very well with him. He is helping Si to come to terms with the fact that this is now his life and helping him to overcome the shame, stigma and guilt that comes with disability.

In other good news, we now live in an adapted bungalow which has improved his life immeasurably, in our last home we had a bath and he could not get into it so I would wash him down whilst he stood against his walking frame, here we have a walk in shower in a wet room. Things like this have made a huge difference to his quality of life, which I am very grateful for.

Si is a proud man, he has served in the army and the police force, both no doubt contributing to his current circumstances. When I first met him he had just been signed off sick with his back but it didn’t affect him too badly, he could walk completely unaided, walk fairly long distances, go out whenever we felt like it, he took very few painkillers and was generally a healthy average 29 year old.

When I think about those days, its really hard to believe that our lives have changed so much in just six years. I worry about what the next six have in store for us.

At the moment, Si is coping on crutches or a walking frame. We are reaching the stage now that he really needs a wheel chair to use on the worse days or to enable us to go further and go out together more often. In reality I expect he will be in a wheelchair full-time within the next three years. It won’t change how I feel about him, but I know it will affect our relationship as he will be even more demanding (through no fault of his own).

I don’t know how much longer I can continue to work full-time as its exhausting as it is. We are also looking into having a carer come and visit the house while I am in work as it is getting too much for him to even fetch his dinner from the fridge. We are at the beginning of this process, I don’t know how long it will take or even whether we will get any help, but I do know that we can’t go on like this. I do as much as I can for him but it’s just not enough. He needs more than I can currently give him and that’s not fair.

I hope that this has given a small insight into our closed off, lonely world and may offer a bit more understanding of  living with disability.

Please ask any questions in the comments, and let me know what you think!

Thanks.

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