What it’s like

I have been receiving .Care’ now for many years. I’m bedridden, 24/7, totally dependent on a team of carers. Before I had my ‘own’ carers I was dependent on agency carers coming in. What was that like? Dreadful. How would you like to have strangers entering your home, Treating it as if it were their own. treating you as though you were just a job to get through as quickly as possible! At one stage I had one carer trying to wash me, whilst another assisted to feed me a jelly.!! They were annoyed when i protested. I said it was like them sitting down for a meal, whilst someone tried to wash them. The analogy escaped them. They snapped that I ”only had 15 minutes..” I was, in those days, in tears every day due to this kind of treatment.

Moving on, I now have my own team, funded by Social services. I’m treated as a human being again. I chose who enters my home now. Who wipes my bum ( I can’t do this myself} , who  has access to my private information . Yet, social services are , yet again, trying to take this away. It’s all about Funding. If it gets transferred to NHS-continuing care programme, NHS have to ‘pay for me’ . Social services passing the burden ( that’ll be me } onto health. My care package is large-and expensive, but I have to contribute all of my DLA care component towards it, plus a bit extra. Return to the days of sobbing, days of fear, not knowing if i was going to be left for hours….no thank you.

I smile, I laugh , but these aspects of ‘normality’ were fought for. Underneath there are still times when the delicate balance of acceptance of my circumstances and my disease can tilt towards the negative. My belief is that there is always someone worse off than oneself-regardless. However, the sense of freedom I have is relative. Trapped as I am, in bed, in one room. I have adapted, but don’t take it away. Don’t take the sense of freedom and choice I have away.

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