As if things were not bad enough trying to cope with the day to day struggles of being a 24hr carer of a very sick husband, I get word this week that my father has terminal lung cancer. Also that my brother who lives with him has been made redundant.
My father being ex RAF is coping quite well with the news and says as long as they control the pain he will be fine. I am left wondering if his service in the RAF is somewhat to blame as he and his colleagues were on the Christmas Islands during the atomic tests of the early 60's, told to have their shirts on and turn their backs to the blasts as the bombs imploded under water.He has a number of photographs of mushroom clouds in his collection. So that along with his heavy smoking which he gave up 6 years ago, means that he will die gasping for breath as his father who died of emphysema did before him.
With treatment they say he has 10 months left at the most. So I hope I will get stuff sorted here sufficiently so that I can spend some time with him before he passes.
News on the home front is about the same, Hubby should really be in hospital right now as he is so ill but every one in the medical profession shrugs their responsibility, saying if it gets too bad go to A&E. We seriously considered it last Friday as he was in so much pain and his breathing when sat upright is very poor. Then we thought it through, we would have to sit in A&E for up to 6 hrs while they decide to admit him or not. I would have to constantly tip him back in his wheelchair to maintain his breathing and blood pressure as putting him on one of their trolleys would be dangerous as there would be no way to control his spasming legs on such a narrow bed.Then who at our local hospital would be qualified to help him, we have seen the pain specialists before they were useless and there seems to be no oral medicine he can tolerate to ease his spasticity short term. So we decided to make a 'hobsons' choice and stick it out at home as long as we can.
Monday I will have to get him across to Addenbrookes an hour away to see the consultant surgeon and ward manager. I am kind of hoping they open their eyes to how sick he is and admit him pending his operation on the 20th. But no doubt I will be left to struggle on as usual, because they don't give a shit about the holistic well being of their patients or those who care for them.
Showing posts with label peterborough local disability caring sports. Show all posts
Showing posts with label peterborough local disability caring sports. Show all posts
Friday, 9 September 2011
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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