Have not written anything for a few weeks, as trying to just get on with it. Last week we had to stand down one of carers after a 04:00am argument over what he could and could not do. We like many in our position are having terrible problems finding the right team to look after Hubby. When the agency pays £7.58 per hour why am I surprised, when we get dead-end people in a dead-end job.
The system sucks, to get this provision of care you have to pass an assessment proving ongoing medical nursing need and not just social care need, but you don't get provided with professional people of that level, no you get people who have never done a days caring in their lives, people with lots of personal baggage, no personal discipline or confidence to do a good job. I know this is not everyone's experience, but it is ours.
Hubby is still struggling over the big decision as to whether to submit to the Baclofen pump operation, and I am desperately trying to hang in there giving him the support he needs to make what I think is the only decision without pushing that down his throat.
Meanwhile he is having a horrible time with the pain and spasm, talking regularly about ending it all, the story line in Emmerdale is not helping either. Ever since the x-ray machine at Peterborough City Hospital crushed his left leg his rectus femoris muscle looks like it is ready to pop out of his leg, which of course is extremely painful on top of his already trashed knee.
I since we now have carer cover am actively looking to get back to work as a Project Manager in the engineering fields. But I know as soon as someone sees that you care for someone they run a mile. It is their loss I know , but still hard to take as I do have a pretty sound CV with oodles of experience.
So to give you a picture of what it is like for us at home, lets take yesterday as an example,
Having spent Saturday night up at least once an hour to adjust his legs and try and make him comfortable, 06:00 arrives so his urine catheter has to be done, so I drag my tired bod out of bed yet again, get the stuff, sit him up over the edge of the bed, drain off the urine lift him back into position on the bed, physically , forcibly straighten his legs, bring up his legs again, put the cushion pad in between his knees, stuff pillows on his right side to secure his legs from flopping over, flip his pillow, flick his toes as they constantly cramp. Then I can flop into bed again for a few more minutes before he asks for help again. This is how it is constantly through the night and we can not get the carers to do this so I can get some real uninterrupted sleep, instead like last night they stand watching me doing it all and when we try and get them to do it they mess it up hurting him terribly. Last time I looked I am not superwoman! why am I so...oo special to be able to do what these carers can not? Utter bollocks..
just after 08am we get TDB up but he is in so much pain that he very shortly needs to go back to bed for further stretching etc. No wonder my arms are like a Russian shot putters. We were supposed to get a visit from relatives y'day but had to put them off as I knew I would not be able to cope with his bad mood being in such pain and their need to be entertained. This is how carers/disabled become so isolated. So the day went on bed up, bed up over and over again.
So we are still here living the same crap day in, day out....