Words and Pictures Day 1


It’s the end of the week and I’m flagging. Day five of getting up at 7ish and I could sleep all day. Night time care stuff means we rarely go to bed before midnight – and then the nights are up and down.

I’m recruiting a new PA so I can stay in bed – I can get up when I’m ready then rather than relying on hubs before he leaves for work. He’ll get a bit longer in the morning to do his own things too.

I’m hoping it will give me more energy to have better days and nights. Less pain and being more alert is rather appealing. Having PAs help at the right time is life saving – life giving. Just having someone sit with me doesn’t seem a lot – doesn’t seem essential. Fancy someone getting paid good money to do nothing!

People will see it worthy to raise money or pay taxes for machines and hospital equipment to keep people alive but a sit in social care service wouldn’t attract the same interest!

The fact is, it’s as essential as the vent that keeps me alive. Shame that these services are the first to go in the cutbacks. I’m having to cut one PAs salary to fund this essential service from another. That’s not fair either – but if I can’t live otherwise what option is left?


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