I sit here today in constant eye contact with my ailing hubby, wondering what is going to happen next. He is sat as still as possible as every movement causes pain. Over the last two weeks I have contacted the medical people involved in his care and met with a wall of silence. I told the GP that every 2-3 hours he was screaming out in pain and clutching his chest, the reaction, silence. Hubby has told them that a Klebsiella UTI was causing him grief with extra rigidity and spasms, the reaction a stupid letter implying that we had been telling everyone that our local hospital are refusing to treat Hubby, which is not the case. We are not stupid we do understand about resistance to antibiotics.
Take him to A&E I hear you cry.
I could do that but that would be rather cruel in Hubby's case as it on average takes 6 hours to get through the process, meanwhile he would be sat upright in his chair in pain, with breathing difficulties, he can not safely lie on the trolleys they have, his body being too spastic & contorted. They would then order an x-ray to check out the knife like stabbing pain in his back and spine, we would trot over to the department to be then told sorry we cant take an x-ray of your hubby as he can not sit still long enough or straight enough for us to do it.
I tried this morning to get him admitted straight onto a ward, where I could set up his special mattress and provide an environment for a doctor to at least check him out and maybe put our minds at rest. Sorry I don't feel comfortable dealing with your hubby's case, get in contact with your spinal injuries unit. Our spinal injuries unit is 80miles away in London. We rang this doctor yesterday left word with secretary that it was urgent, could he not have told us that yesterday. Thanks for nothing !
So here we sit looking at each other waiting for the inevitable, Autonomic Dysreflexia attack , heart attack, stroke etc etc...wondering whether the spinal injuries unit will phone us to come on in or whether they will slam a door in our faces as well.
Tuesday, 26 July 2011
Sunday, 17 July 2011
This is how it all went wrong !
Many patients having dealings with the authorities will have a list like this. A list of missed opportunities to help, a list of promises of help that don't materialise, a list that hides the hidden days of relentless pain and suffering for carer and caree, a list that will eventually if someone does not act lead to a pointless, unnecessary early death of someone who I dearly care about. Where are the human rights lawyers when you really need them?
Sunday yet another day to just get through, helping as much as I can to ease pain and suffering.
Saturday, 16 July 2011
5 days on quite obvious no one gives a shit
The real story of caring today and the real pain of being on a NHS waiting list.
It's Saturday, spent all week waiting for the calls from the medical people who have the power to change our situation. But no we are still here in the same bad position.
I have spent most of the day after getting hubby up at 8am this morning trying to rearrange his feet, trying to make him a little more comfortable. Sitting watching him, as his left hip spasms so bad that he hangs onto his wheelchair with his right arm as if riding a bucking bronco ride, trying to hang on until it subsides or I lift him again to try and make him comfortable. But still no one is listening I watch his face the pain etched across it, and jump out of my skin as he shouts in pain and his startle at the sudden start of the spasms again.
I dare not complain of my many aches and pains, as his are 100 fold mine. Just praying my body holds out long enough to see him through this. This week I had to give up another chance of getting back to work because we have no carers.
Monday I will try and get him to the local hospital for an ultrasound scan of his bladder, maybe that might kick start some much needed help. I hear him shouting in pain again got to go and help him. See you all laters ....
It's Saturday, spent all week waiting for the calls from the medical people who have the power to change our situation. But no we are still here in the same bad position.
I have spent most of the day after getting hubby up at 8am this morning trying to rearrange his feet, trying to make him a little more comfortable. Sitting watching him, as his left hip spasms so bad that he hangs onto his wheelchair with his right arm as if riding a bucking bronco ride, trying to hang on until it subsides or I lift him again to try and make him comfortable. But still no one is listening I watch his face the pain etched across it, and jump out of my skin as he shouts in pain and his startle at the sudden start of the spasms again.
I dare not complain of my many aches and pains, as his are 100 fold mine. Just praying my body holds out long enough to see him through this. This week I had to give up another chance of getting back to work because we have no carers.
Monday I will try and get him to the local hospital for an ultrasound scan of his bladder, maybe that might kick start some much needed help. I hear him shouting in pain again got to go and help him. See you all laters ....
Tuesday, 12 July 2011
Can things get any worse ?
Monday we had a long telephone conversation with our GP as Hubby is steadily deteriorating with what we think is the symptoms of the Klebsiella UTI, but the Microbiologist does not want to treat because there are limited antibiotics that can be used on this strain, last time it only seemed to reduce the levels and not totally kill off the infection. So the plan is wait until the operation for the Baclofen pump is set , give antibiotics in the lead up to, hoping that it does not become a full blown Kidney infection in the meanwhile. Hubby only has one Kidney.
What do I mean by deterioration.
Over the weekend, he reports that he is losing what poor function he has, in his arms and fingers. Has starting dropping his drink bottle. All his joints feel even stiffer than usual, which has lead to a very painful groin strain and unbearable pain in his lower back. He can no longer go through 6 hours in between catheters, on average 4 hourly at the moment. His Diaphragm feels very tight restricting speech and depth of breathing. Feels very weak, and bilious. Sense of touch is going getting numb fingers. Neuropathic pain (pins & needles, burning sensation) in feet even worse than usual. Very Painful Spasms in legs, left hip + arms increasing, increasing pain in arthritic left knee. Periodically his Autonomic System is also starting to show signs of internal distress as he is flushing up as if body is getting ready to have an attack, at those times getting sharp pain behind left eye, + feeling very hot. Twice during the weekend, when breathing + pain becoming an issue, I have felt totally out of my depth and have got extremely close to ringing 999.
I am caring for Hubby on my own due to our care agency walking out on us two weeks ago, trying to physically push through all the stiffness, spasms etc to carry on physiotherapy throughout the 24hour period just to get him through the day and night. I am also recovering from a summer cold that has left me with a hacking cough.
Hubby needs treatment for UTI now before it is too late quickly followed up with the fitting of the Baclofen pump.
I'm Not Superwoman.
Just a note to make a wares,
just in case someone cares.
Every time he cries with the pain, shouts and blames me, who is it in the firing line, is
it superwoman ? oh no its just me.
Every time suicide is in the air, his pain he can not bear, who is there, is it
superwoman ? oh no its just me.
Every time he angrily asks, why the medicos are not doing their tasks, who is there, is
it superwoman? oh no its just me.
Every time his feet fly off his chair, spasming in mid air, who is there, is it
superwoman ? oh no its just me.
Every third day who is there to collect the sh**, not a wife’s normal bit, is it
superwoman ? oh no its just me.
Every six hours to collect the p***, without a miss, is it superwoman? oh no its just me.
Every time he needs shifting who is doing the lifting, is it superwoman? oh no its just
me.
Every time he passes out, with blood pressure no doubt, is it superwoman? oh no its
just me.
Every time a new drug supply, who is it to apply, is it superwoman? oh no its just me.
Every time we ask for help and the medicos whelp, who is there, is it superwoman?
OH NO, WHY IS IT JUST ME?
Can things get any worse ?
What do I mean by deterioration.
Over the weekend, he reports that he is losing what poor function he has, in his arms and fingers. Has starting dropping his drink bottle. All his joints feel even stiffer than usual, which has lead to a very painful groin strain and unbearable pain in his lower back. He can no longer go through 6 hours in between catheters, on average 4 hourly at the moment. His Diaphragm feels very tight restricting speech and depth of breathing. Feels very weak, and bilious. Sense of touch is going getting numb fingers. Neuropathic pain (pins & needles, burning sensation) in feet even worse than usual. Very Painful Spasms in legs, left hip + arms increasing, increasing pain in arthritic left knee. Periodically his Autonomic System is also starting to show signs of internal distress as he is flushing up as if body is getting ready to have an attack, at those times getting sharp pain behind left eye, + feeling very hot. Twice during the weekend, when breathing + pain becoming an issue, I have felt totally out of my depth and have got extremely close to ringing 999.
I am caring for Hubby on my own due to our care agency walking out on us two weeks ago, trying to physically push through all the stiffness, spasms etc to carry on physiotherapy throughout the 24hour period just to get him through the day and night. I am also recovering from a summer cold that has left me with a hacking cough.
Hubby needs treatment for UTI now before it is too late quickly followed up with the fitting of the Baclofen pump.
I'm Not Superwoman.
Just a note to make a wares,
just in case someone cares.
Every time he cries with the pain, shouts and blames me, who is it in the firing line, is
it superwoman ? oh no its just me.
Every time suicide is in the air, his pain he can not bear, who is there, is it
superwoman ? oh no its just me.
Every time he angrily asks, why the medicos are not doing their tasks, who is there, is
it superwoman? oh no its just me.
Every time his feet fly off his chair, spasming in mid air, who is there, is it
superwoman ? oh no its just me.
Every third day who is there to collect the sh**, not a wife’s normal bit, is it
superwoman ? oh no its just me.
Every six hours to collect the p***, without a miss, is it superwoman? oh no its just me.
Every time he needs shifting who is doing the lifting, is it superwoman? oh no its just
me.
Every time he passes out, with blood pressure no doubt, is it superwoman? oh no its
just me.
Every time a new drug supply, who is it to apply, is it superwoman? oh no its just me.
Every time we ask for help and the medicos whelp, who is there, is it superwoman?
OH NO, WHY IS IT JUST ME?
Can things get any worse ?
Wednesday, 6 July 2011
Peterborough Disability Forum in the Community
Sharing this email from my friend Bryan so that it reaches a larger audience.
Peterborough Disability Forum is going out on the road. Talking to organisations and groups of people that can’t always access the main meetings at the Town Hall or Cresset Centre.
The Disability Forum was established in 2009 to give disabled people a voice in the way the city is run. And this is your chance to have your say on issues that concern you, your family or carers. Access, transport and health and wellbeing are just some of the themes discussed at these meetings and there is every chance an officer from the council or health authority might be available to answer many of the questions you want answering
Working in partnership with the city council and NHS/Primary Care Trust, the Forum has been involved in the reopening of St Georges Hydrotherapy Pool and the creation of the Changing Places toilet facility. If you notice the new accessible parking bays and improved pavements in and around the city centre, that’s probably down to the ongoing work between the forum and City Council
Would you like to find out more about Adult Social Care or sports and fitness programmes for people with disabilities?
Do you want to find out how you can contribute to one or all of the Forums sub groups and make a difference to the way the city works?
If you run an organisation that would like to hear more about the work of the Disability Forum and how you or your group could get involved
Please contact Bryan Tyler email : dialsport@gmail.com
Best wishes
Bryan
Bryan Tyler
Disability Forum Manager
DIAL Peterborough
01733 265551
Peterborough Disability Forum is going out on the road. Talking to organisations and groups of people that can’t always access the main meetings at the Town Hall or Cresset Centre.
The Disability Forum was established in 2009 to give disabled people a voice in the way the city is run. And this is your chance to have your say on issues that concern you, your family or carers. Access, transport and health and wellbeing are just some of the themes discussed at these meetings and there is every chance an officer from the council or health authority might be available to answer many of the questions you want answering
Working in partnership with the city council and NHS/Primary Care Trust, the Forum has been involved in the reopening of St Georges Hydrotherapy Pool and the creation of the Changing Places toilet facility. If you notice the new accessible parking bays and improved pavements in and around the city centre, that’s probably down to the ongoing work between the forum and City Council
Would you like to find out more about Adult Social Care or sports and fitness programmes for people with disabilities?
Do you want to find out how you can contribute to one or all of the Forums sub groups and make a difference to the way the city works?
If you run an organisation that would like to hear more about the work of the Disability Forum and how you or your group could get involved
Please contact Bryan Tyler email : dialsport@gmail.com
Best wishes
Bryan
Bryan Tyler
Disability Forum Manager
DIAL Peterborough
01733 265551
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