Christmas - Same old Shit different day.

We didn't get Christmas this year, yes there was the 25th December but no Christmas dinner for us, no lazy day stretched out in front of a cozy fire, drink in one hand remote in the other.

Lets back up two days to Thursday. The GP called to say that Hubby had yet another UTI a nasty little bug this time called Klebsiella and the only treatment hospital strength anti-biotic. She very kindly scratched her head to find us a solution where he could get treatment at home rather than in hospital. The district nurses would come and give him an injection in his rear in association with Lidocaine for the next five days. Okay we said we are up for that. So on Thursday they came and gave said injection. We had a terrible time during the night if our nights are not bad enough already Hubby's legs were so stiff I was having extreme difficulties dealing with his spasms which I normally sort by straightening his legs to relieve. So in the morning we rang the doc and because he was screaming out in pain she sent an ambulance. Bit of a waste of time as we can not travel in an emergency ambulance. After much arm twisting we head to A&E in our own car.

The joys of our new hospital in Peterborough, unusually I got a parking space in the extremely dangerous for wheelchair users disabled car park, everyone must have decided xmas eve was not the day to be sat in a hospital. Well we sat in various parts of A&E for over 6 hours until they decided that our GP was right and Hubby needed to be admitted so that he could get IV antibiotics.

The found us a single occupancy room, barrier nursing had to be enforced, in the Cardiac unit. What a nightmare for me trying to get him settled in unfamiliar surroundings and on top of that it was bowel day so I had to persuade the staff that as it was now 7pm it was urgent that I get him seen to, before anything else that they might deem to be important. I am a bit of a pain in the neck for staff I know but I have to be forceful or else Hubby suffers from their ignorance of his SCI condition. Got Hubby settled in bed after doing the business then we realised that he could not maintain his body temperature having got really cold earlier in A&E, the room was way too cold for him to safely recover, especially in the nude as he sleeps with minimum covers because of his spasms. So up we get him again in his wheelchair wrap him up in his blankets, get the nurse to give him his antibiotics and start negotiations as to our best course of action.

No additional heating was available, so we told them for Hubby's general well being he would need to go home where it is warm. So a plan was hatched, we were to return 3 times a day over the next few days to get his IV and then return home where I can better manage all his other medical problems. So on xmas day we returned to the hospital just after 8am, then again at 2pm and 8pm.

CHRISTMAS WAS CANCELLED FOR US.

Boxing Day same routine again....

Some better news for a change

Stanmore have agreed to take a look at Hubby 4-13th Jan plus the feb admit as well. Maybe we might get to the bottom of what is really going on with Hubby. Will be great for me to be able to share the burden for a few days with staff that should know what they are talking about. I am hoping that I can learn some more from them about Hubby's condition so as to understand what is going on with him.

So now we have a date to fix on we just have to keep going for the next two weeks. Hopefully my shoulder + back will keep going with pain killers until then. Must admit I am secretly hoping they will find a way to get him some sleep while he is there, so that I can also.

We have been training one of our new team of carers this week. We think he will do okay at the routine stuff, so far so good. Crisis stuff I am not sure yet. The care agency manager is coming on Thursday to carry out risk assessments on the manual handling, they need to find a way or all bets are off.

We are a bit more hopeful re the future toady which has got to be a good thing.

http://onmybiketoo.com

Oh Dear having to write nasty emails again

Dear Social Worker et al :

There is an old management training mantra, ASS U ME, makes an ASS out of U and ME. Re ferticare, NO, not the reason we were talking about it. Some studies have shown that this same treatment at a “lower frequency” reduces spasms in some patients.
Terence has decided to decline this treatment at this time, one of the reasons being, people jumping to wrong conclusions ! Feels his dignity has taken a big enough battering already at this time, without people sniggering behind his back.

Angela Gall [Stanmore] can not think of anything to give Hubby to keep us going until February, in the way of an epidural etc. I am trawling the internet for expert Anaesthetists, Pain Experts others , there must be something out there that will numb his below waist sensations for a week or so at a time. The NHS is being very cruel leaving him to suffer like this and I believe his human rights are being trampled on.

Re the night shift: you make it sound like we have made a choice to decline the night shift. What choice ? there is no choice, we are between the proverbial rock and hard place. We need a qualified physiotherapist on nights to do what I do but in a safer manner and to train the carers properly. The physio will have a feel from his vocational experience of how far a damaged human knee can be manipulated. You lot are really pushing me to walk out on my husband, I will have to for my own medical safety. Then I wonder how quickly you lot would realise what we have been trying to tell you is fully justified and true. Please see sense guys, do I really have to manufacture a medical emergency?

Next Thursday Belinda from Commicare is coming to witness what I have to do to straighten his legs every hour during the night. She will feel for herself, hopefully without hurting herself, how difficult it is to straighten Hubby’s legs, also how ‘sloppy’Hubby’s damaged left knee feels. You yourself could not part Hubby’s knees when you were here so know how clamped up everything gets. I guarantee she will not be able to do the procedure.

So to summarise why are we not starting the night shift at this time:

1. Would be asking inadequately trained Carers to carry out a dangerous procedure [hourly forcible leg straightening] that could cripple them [possible back injury, shoulder injury, sprained wrists, spleen damage] and take away their livelihood.
2. Would be asking inadequately trained Carers to carry out a dangerous procedure that could further deteriorate their clients (TDB) well being, resulting in further damage to his left leg.

Then why am I doing said procedure, straightening Hubby’s legs is the only way to stop his painful leg spasms at the moment. Again all to note I am now carrying out this very physical hourly procedure at night with a back, shoulder, knee injury, and no significant sleep in which to recover my health. Not more than 2 hours straight sleep since September 16th. THIS IS AN URGENT CRISIS I WILL WALK AWAY INORDER TO PROTECT MY OWN HEALTH & FUTURE PROSPECTS OF RETURNING TO WORK.

With all due deference to those copied in on this email DO SOMETHING TO CHANGE THIS SITUATION IMMEDIATELY OR BE PREPARED TO FACE THE CONSEQUENCES OF YOUR INACTION.

Angela & Terence

Oh its Wednesday today....every day seems the same...

Just finished the on-line food shopping our only way of having food in the house. Wouldn't you have thought that if someone in your house was getting higher rate DLA they would knock off the delivery charge, no such luck.

Going to try and venture out in the car today as Hubby has a physio appointment and then to the new Hospital to see his Kidney Doc. Bit worried about it as this morning his spasms are so bad that when I went to straighten his legs he was screaming out in pain as his stomach muscles were firing off painfully. Very scary to hear a grown man scream out in pain, I thought I had finally broken his leg for a second. No one knows what it is like to have to torture your nearest and dearest just so their legs relax for a few more minutes. There is no way these untrained carers can do this. I am having to abort the operation of straightening coming back up for another go on frequent occasions as I can feel that if I continued to press down something would snap. They just wont have this feel...and it is not something you can teach.

HE IS DEFINITELY DETERIORATING BUT NO ONE OUT THERE IS LISTENING TO US.

The GPs have their heads firmly up their arses and at the same time deep in the sand. They just do not want to know how we are doing. I seemed to have been pegged as a drama queen which my friends who I served in Iraq will find hilarious, as they know I am the person you want along side in a crisis.

We need help to find a substance that Hubby can take directly into his spine to numb his pain and spasms temporarily to get us through until February when the staff at Stanmore will find out what it is exactly to look after my hubby, then there will be DRAMA...

We need your help, do you know someone ?

www.causes.com/causes/501898-support-campaign-to-get-the-nhs-to-do-its-job
www.onmybiketoo.com for the story of how we got in this mess in the first place.
Thank you Angela

The Doctors why don't they help us ?

Hubby's consultant rang us last night, I explained about the dire straits we are in. She says she understands but can not do anything for him until February. So I asked her if there was an epidural or something that he could be given weekly until then to get him through, no there is nothing known to medical science that my husband can have to relieve his suffering. I do not believe it there must be something that could temporarily numb his sensations to get us through these next 8 weeks.She did mention some sort of vibration therapy that she said might help lessen the spasms a bit but not the pain from his knee. They have definitely decided that his knee does not need operating on even though it don't sound or feel right. All coming from his spinal injury apparently.

Everyone thinks that just because we have carers in training now that things will be okay. They wont ? Still does not take away his pain, spasms etc just means that I am able to walk away for a hour or too.

Come on those of you in the medical community, thinking caps on, give us back some hope and Christmas which at the moment is cancelled in our household.

Happy Birthday Husband of mine.

It is my hubby's birthday today not that it will brighten his day or anything. No you don't get the choice to switch off the pain for the day, Birthday or not. We were going to try and go out for a drive today just to get out of this bloody flat, but he does not feel well enough to deal with the extra pain that would cause. I do not think my back and shoulder are up to the physical lifting involved either so we will stay put today, on our own wallowing in our own misery.

Not much exciting happening this week we have a routine visit to the local hospital on Wednesday to see the kidney specialist which we are both dreading, not the appointment but the parking at the hospital. Thursday we have a planning meeting with our new care agency on how we are to train and ramp up the provision of carers. A bit of light at end of tunnel, except they still will not be able to deal with Hubby's leg spasms on nights so muggings here still will not get any sleep to speak of.

Wrote an email to his specialists yesterday begging for help to get us through to his hospital appointment in February I will not hold my breath. Different Day Same Shit....

Sunday ....Bloody Sunday...

Well its quiet here on a Sunday, except for the stomps we can hear from out neighbour upstairs. The Snow has nearly all gone.

Hubby is definitely getting worse after 3am in the morning he just can not seem to settle, he is regularly shouting out in pain as his legs move from under him and there is nothing I can give him or do for him to help, except move his legs for him and try and make him as comfortable as possible. So not much sleep in our house again last night.

WHY WONT ANYONE DO SOMETHING ABOUT THIS APPALLING SITUATION ?

Surely there is an injection out there to numb his pain until we get to our hospital appointment in February.

Its the weekend again

For most in society this is a break from the norm a chance to relax or do something different. Well not in our household and I presume many carer households length and breadth of the country. The morning emerged from the waking night duties much as it does on any other day. I finally got myself upright at about 07:00 made the first of many cups of coffee tried to loosen up my aching joints and limbs so that I could tackle the gymnastics / power lifting it takes to get Hubby up and out of bed.

Today is bowel day so poor old Hubby has to take various concoctions this morning to loosen up his stools. We will put him back to bed at about 15:00hrs this afternoon, stick a suppository up his arse, wait an hour and then the latex gloves come out ....no I am not going to go into graphical detail but will leave to the reader's imagination, needless to say it does not come out unaided!!

Hence the line in my poem :

I’m not Superwoman, just a Caring Wife.
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?

Visit to the new local hospital at Peterborough

I loaded Hubby up in our car having positioned the car carefully to make use of a dry patch in our car park, so that I did not land on my arse lifting him out of his chair.We arrived at the new hospital in plenty of time at 15:10 only to find it was chaos, everything is so tight for car access in front of the entrance and the temporary disabled car parking is quite frankly a very bad joke. It sits in a hole so anyone pushing a wheelchair independently must be a Para-Olympian just to get from there to the front door. The car park is extremely tight for space as well so if you have one of those big mobility vehicles you ain't getting in. We don't but still could not find anywhere to park and unload. So I parked up in the drop off zone and went in to reception primarily to cancel our appointment as I could find anywhere close enough and safe enough to do the gymnastics he takes to get Hubby out of our car and into his wheelchair.Any ways I got lucky as Toni the manager for disability issues was on the front desk. Very nice lady who showed us somewhere safe but "unauthorised" that we could park, she also took us up to the Neck and Head department and got us seen as a priority. So there are some nice people out there. I must apologise to her here for my hubby's grumpy demeanour, he isn't generally like that honest but by this time he had enough of being cold and unsettled. The appointment went well but looks like we need to go back for further investigations into Hubby's swallowing problems.

On the way home we got some fish + Chips for tea, took them home and enjoyed them.

Rest of our evening was spent trying to get Hubby's body temperature back up to where it should be , he gets so cold so easily.He was in a lot of pain last night with his feet and left knee.

Put him back to bed at 8pm for a couple of hours and joined him myself as exhausted. We didn't get that much rest as his legs were spasming pretty badly no sooner got him settled lie down and he was asking me to attend to him again. Back up at 10pm to clean his teeth and do his catheter at midnight.

00:30 back to try and lie down again after working on Hubby's legs for quarter of an hour to try and settle them. Then up again at 02:00, 03:15, 04:00, 04:20, 05:13, 05:30, then at 05:45 do his catheter a bit early since up any ways. Try and get some more snatches of sleep before getting up at just after 07:00.

10:30 this morning we had a visit by the housing officer and Community OT as we are trying to get rehoused. This place just ain't working for us, but we realise, having been there ourselves that we will not be a high priority. They were not that impressed with Hubby's cannibalised wheelchair, where have had to remove one of the front caster as he kept swiping his heel, padding on his right armrest where he hangs on for dear life so that he does not fall out of his chair to his left weak side. They saw for themselves that I am in a lot of pain with my back and could hear the grinding in my sore knees, especially as I had to reposition Hubby several times while they were trying to talk to him.

Well here we go into the black hole again of the weekend, where even less people give a toss about about anyone.

New to Blogging will give this a go...

Today is Thursday 2nd December much as most days I do stuff on my computer in between looking after my sick hubby. If you want to know about how we got to where we are now keep re visiting http:/www.onmybiketoo.com where a fully account of our story will be published shortly.

My day started at 06:00hrs today by carrying out my hubby's urine catheter as it does most days, when I say it started that sounds like I had a night sleep. We don't sleep in our household we cat nap in between Hubby's spasms during the night, last night I was up at, 01:50, 03:00, 03:45, 04:15, 04:45, 05:30. Every time I get up it is not a matter of 'plumping' a pillow and back to bed no its hard physical graft for at least 10 mins forcibly straightening his spasming legs, repositioning his twisted body in bed and then I get to lie down again.

So 0600 came around again where I have to carefully insert a plastic tube down my hubbys penis to extract the urine from his bladder. I hasten to add I am not medically trained but have had to learn stuff over the last three years that I would have preferred to have left with medical type people.Such is the role of family carers in our society today.

Around 07:30 I got him up, again that sounds so easy, but it isn't try putting trousers and socks on someone's legs that are trying to kick all the time and at the same time not hurting him. IMPOSSIBLE. Then I sit him up in bed and physically lift 87kg of man across to his wheelchair. We don't use a hoist because it hurts too much.

In our front room we tilt his wheelchair back against some cushions so that his blood pressure does not fall to dangerous levels and sometime this morning he will get a wash and breakfast as he desires. He will spend most of day trying to sit as still as possible as any movement sets off his painful spasms. i will have to readjust his spasming feet on a regular basis and reposition him in his chair to give relief from sitting in one position for too long.

Today we have a hospital appointment so I will physically lift him into our car for the journey to the hospital. I will tell you more about how that went later.

Catch me on twitter & facebook at onmybiketoo

www.causes.com/causes/501898-support-campaign-to-get-the-nhs-to-do-its-job