The system is taking the p*ss out of carers

My Hubby was admitted to hospital on 20th June with a wound on his thoracic spine that requires surgery, two lots in fact . the first was performed weeks back to de-bride his wound to aid in healing. Since which time he has been attached to a vacuum pump and is having two strong IV antibiotics which require careful blood monitoring for liver / kidney function. Next Friday he will have the final operation to put skin graphs over the wound.

So why am I still needed to help him.

1. He has a has a fear of hospitals since his appalling, cruel, treatment at a "nameless" NHS hospital when he first got ill in 2007. He can become verbally combative if he feels threatened, or unsafe. My presence ensures that he does not get labelled as a nuisance patient, as I keep him calm, he can have a row with me and it does not cause the whole ward to get upset.
2. Medical Safety : when he has an autonomic dysreflexia attack he is unable to press the call buzzer. Also since that buzzer is understood by most of the staff to mean that a patient wants them when they can get round to it, because it is not the emergency call alarm, the staff could loose a vital 15minutes in a syndrome that gets very serious, very quickly, added to which getting the on call Doctor on the ward quickly is a bit of a lottery. This actually happened, previous post details.
3. Patient Dignity :  who would want strangers how ever qualified, sticking their fingers up your bum so that you can empty your bowels, sticking a pipe down your prick so that you can urinate. Rubbing cream on your intimate parts.
4. Feeding : although he can if the right preparation is made feed himself, (using 2 functioning right fingers + thumb) he still needs a lot of help as he cant reach for things, his finger dexterity is very poor so lifting off plate lids, buttering bread, opening pepper packets etc is near impossible. if I wasn't there by  the time staff helpers would find the time, he would be eating cold food, be rushed and someone would be bound to forget to make sure his drinks bottle was refilled and near by. Also I am cooking for him many times a week because the hospital food is so bad.
5. Multifaceted problems : it is very difficult for the different numerous staff members to keep in mind amongst all of the patients on the ward , the various pre existing medical problems they have as well as what they are in hospital for. Terence has a high level spinal injury, a very painful arthritic left knee, one functioning kidney all of which have to be born in mind when interacting with him. So again I am an extra safety measure to ensure someone doesn't do something inappropriate with all good intentions.

So I am here at his side for most hours in the day. I have carefully managed a few short break escapes where I have ensured he probably wont need anything, timing being everything. I try and survive on 5 hours sleep if I'm lucky, sleeping beside his bed on a mattress on the floor, just in case he needs help during the night. The window of opportunity for sleep being slotted in between urine catheters at midnight and 06am. 

So imagine my disgust to look at my bank account yesterday and find out that my carers allowance has not been paid since 16th July. Even though I spoke to them told them I was still caring full time and was not available for work under the regulations. May be the stupid idiots have sent a letter to my home 2 hours away that I have not visited since his admittance. 

So what are people in my position supposed to live of, I'm supposed to be a kept women living off hubby meagre state pension. I do not qualify as being available for work as I am not, obviously. Besides who is going to employ a Masters degree qualified person in the type of work that would be available for a handful of weeks any way. They would turn me down as being over qualified.  I do want to go back to work, but meaningful work as befits all of the work  I carried out and experience previous to our family tragedy , also it would require my local PCT stepping up to their responsibilities and actually providing the carers that my hubby is entitled to under the continuous health care regulations.

The welfare state is supposed to be a safety net , so where is mine ? 

There's Patches & There's Patches

Weekend

pretty uneventful, starting to get into a routine, up at 6am do his catheter, lie down for another 20mins, up roll up bedding, put mattress into vacuum pack bag roll out the air. Get a wash or shower, ready for another day. Saturday got out to ASDA in the afternoon, bought a really cheap DVD player as the ones on the provided TV's are not working and some food for myself for the week.

Monday 2nd July

Lots to do on this day. Try to co-ordinate everything with the busy nursing team, we manage it, sort of, but a bit manic. 2 lots of IV antibiotics, bowel emptying, vacuum dressing change, sounds easy when you say it quick. Every item takes time and can not be done at the same time. The Etrapenem Antibiotic takes 1/2 hour, the [x-]mycin one takes nearly an hour, bowels 2 hours, vac dressing 1/2 hour, then there's lunch and dinner, as you can see the whole afternoon is shot. Well we get Hubby settled after all that poor dude is knackered. Then just before 6pm the drug run, brought us a bit of a laugh. They tried to prescribe Nicotine Patches instead of his pain patches. Very funny since Hubby has never smoked and was a keen sportsman before his illness. We could have been upset by this but you have to keep a sense of humour about these things.

Yesterday.

Got up as usual. Get Hubby his breakfast, look out of the window and see a beautiful little beasty.

A little dear, thought it was a goat at first but no it really is an urban dear. Yesterday was quite busy, doctors rounds and met up with Hubby's OT again. Hoping to mobilise him in a wheelchair with pump attached. Any way we will see. Have a bit of do with cleaner he has a thick heavy cold, coughing and sneezing and then wondered why I didn't want him anywhere near Hubby.

Emergency Fetch the Doctor - Autonomic Dysreflexia

Yesterday, Monday we were expecting a quieter day following a fairly full day on Sunday. All went well until half an hour after Hubby was given a new type of antibiotic, all hell broke out.


I'm sat there having an afternoon doze and all of a sudden Hubby goes into a massive upper body set of spasms, shouts out in pain. They were so bad he thought he had damaged his left arm. I knew it was serious so get the nursing staff involved, who try and take his blood pressure but cant because of the spasms in his arms and chest. They end up attaching the cuff to his leg to get a reading. 


Oh shit it was up to 250/90 Autonomic Dysreflexia was surely indicated, a medical emergency. Doctors were called. We have the GTN spray but decide to hold off using as it can cause as many problems as it solves, diving blood pressure onto the floor. Myself and the nursing staff go through the procedure of making sure there isn't another pain source that is the reason for the attack, I empty his bladder just in case. Always seems like an age when you are waiting for someone to come that can do something positive. Hubby's throat was beginning  to close up, pains in his chest, his head felt like it would explode, feeling nauseated, frightened, shouting out every time a wave of spasms hit. 


Eventually the Doctors arrive, give him something for the pain, some anti histamine, oxygen, paracetamol drip. After about an hour his blood pressure comes back down to more normal levels and the more serious possibilities of bad outcomes lessen. Stroke, Cardiac Arrest etc.  They take some arterial blood  from his groin, it is quite difficult to locate and take. 


Diagnosis:  Anaphylaxic shock from taking the anti-biotic which brought on Autonomic Dysreflexia. 


He is okay now as I write although totally wiped out by the bad experience. The staff on the whole were great, I think it was a bit of a wake up call though, as it re-enforced the importance of not leaving Hubby on his own, and justified me being here. He might not have been able to push the call button had he been on his own. 


Well done RNOH staff. 

#NHS Thriller-Farce Update

Right, deep breath, so many things going on at the moment, or should I say not progressing as they should be, involving Hubby’s care,

MRI Scan Results

Results letter says “oedema-like marrow signal in tip of T10/11/12 spinous process with possible destruction. Likely Osteomyelitis”  does not sound good does it !

Baclofen Pump Refil.

Hubby travelled all the way to Addenbrooke's on Wednesday, despite having grade 4 pressure sore. We are lobbying for this in future to be done at consultants Peterborough clinic. We will fight them on the beaches, we will fight them ...

CT Scan.

After two abortive attempts, no ambulance supplied, got Hubby’s scan done on Thursday. Scanning unit at Peterborough were very supportive, used some initiative , did a scan of his whole thoracic spine plus upper lumbar to make sure surgeon has full picture including the new hump that has appeared on Hubby’s back. They also did a dye contrast scan . So hopefully RNOH surgeon has all the info he needs to make a speedy assessment. We now await the results. He will send for Hubby for an out patient appointment first, so another long ambulance trip for a 10 minute consultation, not happy about that. Why don’t they do stuff like that using video calls. I know they like to see / feel the patient but in this case there is more danger to Hubby travelling all that way than the value the consultant will get out of the consultation. Unless they will admit straight away.

Pain

Hubby in varying levels of pain, keeps complaining of different kinds of pain in different locations. Eg keeps getting sharp pains in his head, occasional stomach pain. His arms and shoulders are a worry, he is really concerned that he going to lose the little function he has. Neuropathic pain in his feet is bad at the moment as well. Been waking me up during the night because he keeps getting painful spasms in his right leg.

Carers

No word what so ever from the dude at the PCT in charge of getting us care provision.  I have been told he is breaking the law not getting it sorted as Hubby comes under Continuing Health Care . NHS is therefore liable to provide his carers. Meanwhile I am coming under pressure to put Hubby in a nursing home because of my own health problems with my back. I find this an incredibly stupid suggestion on lots of levels, nursing homes are not keen on taking patient on that should be in hospital, Hubby needs a specialist unit for the severely physically disabled, but I know they will try and bundle him into a dementia unit which is totally unsuitable as he is as fully mentally aware. We are going to use some of our savings to get me checked out, MOT, when I get him in hospital, will rule out any serious causes of the pain in my back and hips. I am not happy living on pain killers long term not knowing what is up. Probably a trapped nerve though.

Next Moves

Firstly get through this long weekend. After which continue to lobby GP’s &  surgeon to get Hubby into the spinal unit asap. Battle to get hubby his carers  afterwards, 1 battle at a time. 

Already down, Life just loves to kick you again.

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.