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A Carers Thought's

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

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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