There's Patches & There's Patches

Weekend

pretty uneventful, starting to get into a routine, up at 6am do his catheter, lie down for another 20mins, up roll up bedding, put mattress into vacuum pack bag roll out the air. Get a wash or shower, ready for another day. Saturday got out to ASDA in the afternoon, bought a really cheap DVD player as the ones on the provided TV's are not working and some food for myself for the week.

Monday 2nd July

Lots to do on this day. Try to co-ordinate everything with the busy nursing team, we manage it, sort of, but a bit manic. 2 lots of IV antibiotics, bowel emptying, vacuum dressing change, sounds easy when you say it quick. Every item takes time and can not be done at the same time. The Etrapenem Antibiotic takes 1/2 hour, the [x-]mycin one takes nearly an hour, bowels 2 hours, vac dressing 1/2 hour, then there's lunch and dinner, as you can see the whole afternoon is shot. Well we get Hubby settled after all that poor dude is knackered. Then just before 6pm the drug run, brought us a bit of a laugh. They tried to prescribe Nicotine Patches instead of his pain patches. Very funny since Hubby has never smoked and was a keen sportsman before his illness. We could have been upset by this but you have to keep a sense of humour about these things.

Yesterday.

Got up as usual. Get Hubby his breakfast, look out of the window and see a beautiful little beasty.

A little dear, thought it was a goat at first but no it really is an urban dear. Yesterday was quite busy, doctors rounds and met up with Hubby's OT again. Hoping to mobilise him in a wheelchair with pump attached. Any way we will see. Have a bit of do with cleaner he has a thick heavy cold, coughing and sneezing and then wondered why I didn't want him anywhere near Hubby.

ME the human hoist.

Yesterday our under performing care agency finally gave up, took their ball and went home. Making our one remaining carer redundant. Leaving me yet again a virtual prisoner at home looking after hubby 24/7 on my own.

What is the problem? the crux of the matter is, that until the local medical profession wake up and realise that without the surgical intervention needed in this case hubby will continue to be care agencies worst nightmare, someone with massive, H&S non conforming manual handling issues. He can not use a hoist because of the pain / spasms. He can not sleep because the spasms constantly jolt him awake. He needs constant physiotherapy to get through the day, in the form of extreme, forcible straightening of his legs.

All of which everyone expects me as sole family carer to carry out 24/7, surviving on glimpses of sleep in between his spasms. Very hard physical work with no rest, constant day in day out.

23:00hrs 29 June - both having tried to rest in bed for a couple of hours, we get up again. I help brush his teeth, give him his pills. I feel like crap and just want to go to sleep.
Midnight - carry out his urine catheter.Wait for twenty minutes and then back to bed again.Which involves me manually lifting him from his chair to his bed.
01:00 my head finally hits the pillow after working on him, stretching his legs, for 20 minutes trying to get his body to settle.
02:20 he wakes me as his legs have started to spasm again. Drag my tired bod out of bed to help him settle again by forcible straightening his legs, stretching him out etc. He can not settle because he feels like his back is twisting, so I sit him up over the edge of the bed starting the whole regime again. Finally getting back to bed at 02:40.
03:45 he wakes me again, needing an extra urine catheter doing and his legs are spasming again. I finally get back to bed at 04:05.
06:00 up again to do another catheter, more physio etc. 06:15 lay down again.
07:30 his back is in such pain that I have to start to get him up. Try and wake myself up with copious amounts of coffee, finally getting him up at 08:15, which you have guessed it involved more manual handling , lifting by his human hoist, ME.

That's the night shift done, so on with the day which will involve several trips back to bed to carry out physio, and all the stuff that a day shift entails, washing, feeding, entertaining, campaigning etc etc...

This is our life day in day out, we ask for help, but it never comes, day in day out, no rest, no change, no freedom.