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A Carers Thought's

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

Category Archives: Carer

So we received the dreaded brown envelope yesterday, I was at work all day and didn’t manage to speak to si at all throughout the day so he sat here stewing about it. I haven’t even read the form yet, I hid it from him as soon as I came in as we were having a day out today to visit his family in Cardiff. I hoped it would be “out of sight, out of mind” but unsurprisingly it didn’t work. I wanted him to be able to have one last day off, free of the stress of it but understandably, he couldn’t get it out of his head.
He has ended up staying with his nan as she had a fall earlier in the week and it has affected her more than she let on. He has replaced one worry with another, which is equally out of his control. He had enough of some medication with him but not others, so I said I would post what he needed, when I got home I looked on the royal mail website and realised it’s illegal to post medication! Obvious when you think about it but I just didn’t think. He has said he will call NHS direct tmo and see what he can do but I know he will just go without if he can’t get it and even though it’s a 6 hour round trip, I would rather take it to him. I feel like such an idiot for not realising I wouldn’t be able to post it. I was looking forward to a few unexpected “days off” not worrying so much, not being ruled by medication times etc and now it’s even worse than when he’s here!
I know it sounds terrible but it is nice to have some time to myself, I won’t be just lounging around though, we were planning to do his form tomorrow so I think I will go over it and maybe write my suggestions for him, to help him and hopefully ease the stress a bit. I just reblogged a worrying post, which shows that 2 out of 3 pip applications are being denied. I honestly believe another tribunal will break him. It’s such an intense amount of pressure, and when you are coping with extreme pain, depression and a very limited life, it seems that much worse. It’s the very last thing any disabled person needs.
We only have until the 3rd of March to return the form and the onus is on us to gather any evidence, bastards.
Sorry if I have bored you with my rant! Just sick of getting shit on by this government.

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People are always asking Simon what’s wrong with him, he is 35 years old and on crutches or a walking frame all of the time. This naturally makes people curious because he has no cast on his leg or outward signs of injury. The crucial point however is that it is none of their business.

How many people would ask me why I’m fat or ask someone who wears a lot of fake tan why they are so orange? I would bet that very few people would ask these sort of questions but they think its OK to ask a complete stranger their medical history. I find this really odd sometimes and as mentioned previously it inevitably leads to ‘I had such and such wrong with my back have you tried blah blah blah because it worked wonders for me’. Simon, understandably finds it very intrusive and it can make him really angry from time to time.

Due to this, Simon has come up with a new coping mechanism that is giving him some fun. A few weeks ago he decided that he would tell anybody who asked the strangest most unrealistic story he could think of. An example of one he used recently was that he was studying marine biology in Australia and got squashed against the side of a pool by a whale.

It was quite funny watching the man he was telling it to as Simon didn’t even sound convincing to himself and you could tell he didn’t believe Si but wouldn’t question him.

What kind of world do we live in where its OK to ask such intrusive questions about a personal subject but not to call someone out when they are blatantly lying?!

I think its a bit of a silly thing to do really but if it keeps him happy and teaches the nosy bastards to think twice before asking next time, then that can only be a good thing!

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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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ESA is an out of work sickness benefit provided by the government and has replaced Incapacity Benefit.
I’m sure that most people are aware of  ATOS and their involvement in this transition but I wonder how many people understand the differences and major problems with this relatively new benefit. The first major difference is that they split the recipients into two different groups. One is called the support group and the other is known as the WRAG  (work related activity group).
When in the support group, it is understood that you are not fit for work, there is no time limit on how long you can claim for and you receive a higher rate than the WRAG.
In the WRAG however, they limit the time you can claim to a year, you must attend the job centre to see an adviser and begin the process of getting back to work, you can be placed on the controversial ‘mandatory work activity’ and you receive less money.
I agree that on the surface this sounds like a fairly good system as their are many illnesses and accidents that will stop you working for a year or less.
The big flaw in this system is that very few people are put into the support group and most people have to appeal again and again until it is at the tribunal stage. Around 40% of appeals succeed in a tribunal ( http://www.benefitsandwork.co.uk/employment-and-support-allowance/esa-appeals).
This is a very high rate considering what you go through to get to this stage. You will have submitted your form which describes your disability/illness and how it impacts on your day to day life, they will have received information from your own doctor and possibly specialists, you may have attended an ATOS medical (which are very questionable but we will visit that again another time!), your form will have been reviewed and “marked” by an ATOS nurse and you will have appealed, probably submitting yet more evidence (gathered at your own expense).
After this supposedly thorough review and investigation, 40% of appeals still succeed, does this not show that the system is not working?!
Another major flaw is that even when people are found fit for work, and want to get back to work, the support is not there to help them and there are no jobs around! Even if you want to work and are capable, the likelihood is that you won’t be able to! Particularly if your employer would need to make adaptations or allowances for your illness/disability.
My partner is currently at the tribunal stage. His payments were stopped in September last year, right after he lodged a late appeal due to not being informed which group he was in. Despite having degenerative problems, losing a lot more mobility, being awarded higher rate DLA care and mobility, he was still placed in the WRAG again. His medical records from ATOS stated he had an illness we had never heard of, upon going through his personal medical records, he had never been diagnosed with this mystery illness!
He spoke to them two days ago to check the procedure for submitting evidence, and was informed there is still another 4/5 month wait until his hearing. We are lucky, because I work and because of his DLA we can get by, we don’t have luxuries, we can’t afford new clothes or valentines presents and things like that but our rent is paid, we pay our bills and we usually have enough food to last. The ESA he is entitled to would make a big difference, it would allow me to work less and actually care for him.
The tribunal process is long and daunting. We have visited the CAB and the woman there was wonderful, fully convinced that the decision would be overturned, in fact everyone we meet concerning this feels the same.
We have sent off our evidence and now have a long wait to see what happens. This is our real life example of government systems. My partner is left at home all day, 5 days a week, struggling, he can’t cook, clean himself and struggles to even get around our bungalow. This is not fair and can’t continue. He is not lazy or a shirker, he has served in the army and the police force, this is the thanks he gets. If he was able to work he would be, there is nothing he wants more.
This process is a lot of unnecessary stress, money and time. Surely we can find another way of doing it?

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