A day in, a day out: conjoined lives

Yesterday MsF was far from well, and so it was impossible for us to go anywhere. And I mean anywhere at all. We couldn’t leave the house. I have epilepsy and can’t drive. MsF wasn’t mobile by foot or bike. As she cannot be left alone, we were stuck at home as if with superglue.

No-one called  – not even the postie.

We were out of butter, bread and eggs. The nearest shop’s only a ten-minute walk away but it might as well have been in the next county. Luckily the milk is delivered, there was plenty of tea, coffee and cereal and we made dinner from the range of store-cupboard and freezer ingredients I have on hand for just such days. I’d call them emergencies but our emergencies are much worse than that.

I worked but poor MsF was very blue. Thank heaven for the wind-up cabinet gramophone.


Yes, we have plenty of kind and helpful friends and yes, we could have called on them. But just imagine what it’s like to be the person who calls out for help over and over again. You need to save your friends’ help for emergencies, not waste it on inconveniences. And, you know, it IS vaguely shaming to be so dependent.(Other carers will know what I mean.)

Luckily MsF was better today . Bar the drop that sent her falling back like a felled tree in the hallway. But as she missed walls and glass and hardly hit her head at all, we both reckoned she got off pretty lightly. So we walzed out of the house, through the fog, and onto the bus.

School’s out.

In town I got my hair cut, several weeks too late. MsF bought a fancy red polo-neck, and failed to find some wellies. I bought a scratchy 78 record with people whistling. We had a coffee in an old oakbeamed coffee shop. And we came home on the bus.

Hard for anyone who doesn’t have a disabling condition or fulltime caring responsibilities to understand our delight at getting outside, whatever the weather. Hard to understand how two 21st century people could have so much fun from so little incident. Hard for anyone – disabled or otherwise – to be as genuinely nice as MsF is at being accompanied all the time by her mother.

We’re like a pair of mismatched conjoined twins.

MsF has 14 hours of direct payments for care a week. That’s 14 out of 168. We can’t afford to waste it on just getting away from each other. We save it for her nights out,  for cover when I need to work away from home, or am in hospital myself.

Readers who are not fulltime carers, look around you and thank your lucky stars for all that free time you have – which you probably don’t notice you have or appreciate whilst you’re having it.

For many people its like gold dust.


One comment

  1. I so know what this is like. If it was not for home delivery shopping we would have starved. we live day in day out in 2 rooms it is our prison, if it were not for my computer I would have gone insane. When we go out it is a major undertaking even in our specialised vehicle, Hubby hates travelling in it as it is very painful white knuckle ride for him and not because of the way i drive either. He has no upper trunk control so wobbles about with each sleeping policeman we go over, every bump in the road, every deceleration etc. He finds it difficult to wear trousers so usually sits wrapped in his blanket like a sarong. Shoes are extremely uncomfortable bec of the pain in his feet.So he knows he looks odd and different to other wheelchair users when we do venture out making him feel even more socially inadequate.Sometimes because of the NHS failing to provide the care workers we are entitled to I have to risk leaving him home alone, but take a huge unacceptable risk that no one seems to care a shit about. That will be until one time it will all go wrong and then it will be my fault not theirs of course. No one takes responsibility for the impossible situations they put family carers in.


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