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.
Thursday 30 June 2011
Thursday 16 June 2011
Another visit to the local hospital
Unfortunately Mr. T. caught another nasty urine bug and ended up on antibiotics in the local general hospital. The staff were great when we explained what was involved in looking after his spinal injury and decided that I was right that they could not carry out the Health and Safety rule breaking duties that are the only way we get through the torture that is our days. So a mattress was found for me to sleep on the floor so that I could as is my life attend to the forcible straightening of legs that needs to be performed during the night. I think they were also relieved that he would be one patient that they did not have to worry about feeding and toileting as I took care of it all, during his stay.
I was hoping that someone would write a report to social services or some authority helping us with our case for urgency in getting Mr T's Baclofen pump fitted. As they all told me I should not have to be doing what I have to do, ie acting as a human hoist, on duty 24/7 etc etc.
He had it noted that his pain levels were not under control but no one was interested, only wanted to treat what he was in for, getting him back to the community care as soon as possible and out of their hair. Sadly no one gives a sh*t about the holistic well being of the patient any more.
One thing I found alarming on my visit was the provided commode.
it had a hard plastic seat that someone with older thin skin should not be using for fear of pressure sores, also the foot tray had been removed meaning that the disabled are having their feet dragged across the floor, increasing the chances of falling out of the commode. The one we had was particularly dangerous as it had the tray metal ring still attached, a trapping point for patients feet. VERY VERY DANGEROUS...
Poor Mr T had to dragged back home for a shower where he could be safely handled, with bed baths in between.
I do wish people who buy these things would put some more thought it to it before they buy.
I was hoping that someone would write a report to social services or some authority helping us with our case for urgency in getting Mr T's Baclofen pump fitted. As they all told me I should not have to be doing what I have to do, ie acting as a human hoist, on duty 24/7 etc etc.
He had it noted that his pain levels were not under control but no one was interested, only wanted to treat what he was in for, getting him back to the community care as soon as possible and out of their hair. Sadly no one gives a sh*t about the holistic well being of the patient any more.
One thing I found alarming on my visit was the provided commode.
it had a hard plastic seat that someone with older thin skin should not be using for fear of pressure sores, also the foot tray had been removed meaning that the disabled are having their feet dragged across the floor, increasing the chances of falling out of the commode. The one we had was particularly dangerous as it had the tray metal ring still attached, a trapping point for patients feet. VERY VERY DANGEROUS...
Poor Mr T had to dragged back home for a shower where he could be safely handled, with bed baths in between.
I do wish people who buy these things would put some more thought it to it before they buy.
Wednesday 1 June 2011
Profoundly Upset by Panorama Programme last night.
My brother contracted TB Meningitis at age 2 some 42 years ago, leaving him with severely limited mental capacity and no speech. So from the age of 5 he has been in various types of residential care.
Unfortunately throughout his life we have come across abuse like this and have been powerless to stop it often finding out at a very late stage that he was being abused. So late in fact that his sunny go lucky personality had been altered, he started banging his head in frustration, pulling hair etc. He has been tied to a chair to stop him from running around, given medical coshes.
At the moment he seems to be happy and well adjusted, but the lack of suitable facilities because of recurrent government cut backs means that he lives nearly 100 miles away from his family, who would love to interact with him more and include him as much as possible. The whole system is cruel not just the caring aspect.
I of course like many watching last night was profoundly upset watching the programme and do hope that justice will be seen to be done. I suspect they will get not much more than a slap on the wrists though. I do hope I never catch anyone abusing my kin.
The regulator of these services needs to take a long hard look at its self but they wont they are so arrogant, as shown by the spokes person that would not admit that their inspection systems are totally flawed. It is the same with NHS hospital inspections, everyone cleans up their act during the inspections. There needs to be more sneaky inspections to catch the sneaky behaviour.
One suggestion I have for the CEO of Castlebeck that one of my family who runs a day care centre in the USA employed as a deterrent / reassurance measure is the installation of web cameras that relatives subscribe to online so that they can check on their children at any time during the day. Not a total solution as there will always be blind spots and areas where cameras can not be put ie bathrooms, but it is a good start to reassure his clients that they will not be abused and that they take the matter seriously enough to do something about it.
Lastly I think one of the root causes of this is the type of people who are coming in paid caring, as a minimum wage job, not vocation.
Unfortunately throughout his life we have come across abuse like this and have been powerless to stop it often finding out at a very late stage that he was being abused. So late in fact that his sunny go lucky personality had been altered, he started banging his head in frustration, pulling hair etc. He has been tied to a chair to stop him from running around, given medical coshes.
At the moment he seems to be happy and well adjusted, but the lack of suitable facilities because of recurrent government cut backs means that he lives nearly 100 miles away from his family, who would love to interact with him more and include him as much as possible. The whole system is cruel not just the caring aspect.
I of course like many watching last night was profoundly upset watching the programme and do hope that justice will be seen to be done. I suspect they will get not much more than a slap on the wrists though. I do hope I never catch anyone abusing my kin.
The regulator of these services needs to take a long hard look at its self but they wont they are so arrogant, as shown by the spokes person that would not admit that their inspection systems are totally flawed. It is the same with NHS hospital inspections, everyone cleans up their act during the inspections. There needs to be more sneaky inspections to catch the sneaky behaviour.
One suggestion I have for the CEO of Castlebeck that one of my family who runs a day care centre in the USA employed as a deterrent / reassurance measure is the installation of web cameras that relatives subscribe to online so that they can check on their children at any time during the day. Not a total solution as there will always be blind spots and areas where cameras can not be put ie bathrooms, but it is a good start to reassure his clients that they will not be abused and that they take the matter seriously enough to do something about it.
Lastly I think one of the root causes of this is the type of people who are coming in paid caring, as a minimum wage job, not vocation.
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