Care Provision, what should it be ?

I belong to a group on Facebook called "Carers Solidarity" where we discuss various issues we as carers come across whilst caring for our carees. Most of us were appalled, some like myself feeling physically sick whilst watching the Panorama program on Winterbourne Care Home in the Bristol area. Now in the news this week the perpetrators of the abuse got their comeuppance.  

So the Question was asked "what sort of care you would actually like to see, what you think would work and what you may have witnessed does not work". 

So for what it is worth here are my thoughts. 

Firstly I feel I should give my background to help readers to know where I am coming from. I have an elder brother who has severe learning difficulties having sustained brain damage aged 2 from TB Meningitis, he lives in residential care. My mother is now elderly is mobility restricted due weight gained from taking various anti-psychotics and anti-depressants most of her adult life and lives in the community in between emergency hospitalisations. Then there is my dear Husband who contracted a Staph infection in 2007 leaving him a partial Tetraplegic (loss of function in all four limbs) , I am his full time carer. So I come to this from a variety of life experience.

I think everyone would agree that a measure of a successful society is how it cares for its elders, sick, disabled and disadvantaged. So how should the UK authorities ensure that this is the case in the UK?

Identification of those in need.

This can and is done to varying degrees of success by , GP's, LA's, Social Services, Hospitals, family, friends, benefit departments and District Nurses. Once a need has been identified it will  be assessed by one of the appropriate agencies. This works quite well when the person concerned fits neatly into one box of need covered by one agency, where it falls down is where, there are needs that fall across categories, for example , health care + housing + social services help. These more complex cases need to be allocated some sort of advocate that knows the various local and national systems. This person must have some clout to get things moving.

Identification of what help is needed.

Once an individual or family unit has been identified and someone has been allocated as the person to co-ordinate the package of need provision. The client(s) should be assessed to what is needed, people clearly identified as to who is responsible for providing with time scales. All of which should where ever possible should involve the client(s) to allow for personal choices and preferences to be taken into account. What sort of help:- 

• social care provision, costs, funding options, where to be provided, type of care.
• NHS Continuing care worker provision, how much, how many, where etc.
• Is a Care / Nursing Home appropriate.
• How far away would housing, care home be away from rest of family
• Is current Housing fit for purpose.
• How much should the GP be involved over and above the norm.
• Are there any other agencies involved.  
• Does the Client have all benefits entitled to.
• Is there a need for on going physiotherapy.
• Is there a need for supplies of equipment and consumables 
• Is there a need for on going psychiatric assessment and counselling. 

From this an individual's / family's care package should be put together for every client that takes into account their needs now and in the future. Each item should have a lead who is charged with delivering the identified items, with time scales. This then becomes a care package that should be evolved with and for the client, being reviewed on an agreed time scale. 

The Care Package.

Once this has been put together pulling together all aspects of care needed, including, medical, housing, care provision. The Advocate should be tasked with reviewing the various elements on a regular basis as agreed with the client (or clients representative). People tasked with sub items in the plan should have their job evaluations judged against the delivery of those items in a timely manner, not how much money they save the department by non delivery of the needs. 

Accountability when things don't go as planned.

Nobody likes to be told they are not doing a good job, but we are dealing with peoples health and safety here, so people charged with supplying these services must be held accountable when they fail to deliver against the agreed plan. The client(s) must have someone they can go to if they feel they are not getting the help they need, they must not be left on their own to try and fight the many complicated systems that are in place. This issues must be resolved quickly. The allowance of Whistle-blowers must also be an integral part of these organisations. 

Care Agency management and the CQC  must take more care about who they employ, what they train them in and on going supervision and audit. 

Health Authorities must have procurement staff that are accountable when they fail to provide services that are set out as being needed. 

Housing authorities need to be accountable in ensuring that their areas have sufficient accessible housing, special needs housing, dementia housing, assisting living accommodation etc. They also need to be more flexible when they are told their standard offering does not fit the particular situation.  

Funding

I tend to agree with most of the findings of the Dilnot report. Those people, (the current over age 50's) that were under the impression that they were paying their national insurance so they would be looked after, should have their moral contract with the government honoured. Future generations I guess we know, it will be a different beast for us we will have to pay for more at a lower thresh hold level than at present. 

For goodness sake UK Government make up your minds what its going to look like so the rest of us can start paying our dues to make sure we have someone to look after us in our retirement, and ill health.

In Summary

Some looking at this may feel this is already in place, well if it is it ain't working. Care in the community from where I sit is a very unfunny joke. 

• Hubby has been provided care workers for only 6 months out of the 37 months since supposedly covered by continuing health care.
• Provided with totally unsuitable care agencies for Hubby's complex needs.
• Care workers provided have not been vetted sufficiently.
• No cognisance taken of the risks to my health as his carer.
• GPs not pro-active in ensuring health and well being.
• We have been on the housing list for nearly 2 years without suitable accessible accommodation being found. 
• We have had various ups and downs getting Hubby appropriate medical care.
• Social Services & PCT failed to help me see my dying father or attend his or two year previous to that my grandmothers funeral.
• My mother has to fight for every bit of social care she gets. Been a victim of enablement policy and 15minute visits.
• My eldest LD brother is nearly 100 miles away from the rest of his family making keeping contact is near impossible. 

It is Time to adopt a patient / client centred service for the provision of care in all its forms in the UK.

Accessible Housing: Back Home, but isn't our home.

We returned "home" on the 20th September, 3 months to the day that Hubby was admitted to hospital. I put "home" in inverted commas as we have never made this place our home. It is the place where we sleep, eat, the place, the authorities have hidden us away in the community, so that they can forget we exist. My usual mantra, Care in the Community = no Care at all.

I have resumed my search for accessible housing. The council list never seems to have anything suitable, the rooms are always too small to accommodate safely the equipment we need to use. We return to the stench of cigarette smoke from our neighbour which has permeated into all our fabrics in our flat. The Liaison Nurse from Stanmore, visited  last week and tells me her clothes stank of it on her return home. I wonder what is that doing to Hubby's already fragile breathing, and also to me the daughter of father who has recently died of lung cancer. The Housing Association has put a lemon fragrance air freshener in the hall way, but it doesn't eat the toxic smoke that is infecting and assaulting our lungs. Hubby has been trying to shelter his fragile back by using his electric chair even though it is very uncomfortable. We tried to use the new manual one supplied by the NHS but it is too big to use in our tiny 2 bed first floor flat. The bedroom door was the worse obstacle as it only just squeezed through. So it has been stuffed in the bathroom with the hoist we rarely use because of lack of space and carpets.

Hubby has now hurt his right ankle banging into the many barriers to his progress in this flat. 

So rather than fester on all of this I write a letter to the council setting out why they need to move us to more suitable accessible accommodation . Not heard anything from them yet which either means the letter has gone in the bin or maybe someone might review our case again and help us find somewhere more suitable. 

There is another dimension to our unsuitable living arrangements in that looking after Hubby using careworkers is near impossible as they don't have access all around his bed to use sliding sheets and the like. Using a hoist will also be difficult for them as well, because of the lack of space and the carpets.

This causes a vicious circle as without careworkers I can not get back to work to stand a chance of providing a suitable home for ourselves. This is downward spiral that the politicians don't seem to understand, it takes someone giving you a break in one area to ease up a lot of the other challenges. 

Our case highlights again the need for integrated services for the disabled. Medical Need+Housing+On going Care.  

Getting back to politicians, I was very dismayed to read about proposals to stop housing benefit to the under 25. I write here my own example of how having the right to this as a 17 year old, helped me get away from a dysfunctional family life, started my career and saved my sanity.

I tried to stay on in the sixth form at school , but found out that due to my family caring duties, the strain of studying for my O'Levels I was burnt out and could not devote enough energy to my studies. I therefore made the decision to look for a job, which I was very lucky to get as an entry clerical post in the civil service in a benefit office in a town 20 miles away. To grown up readers with cars that does not sound a long way away, but to me that meant getting up at the crack of dawn travelling by train to start work at 8am. The train fare was extremely expensive, so I used to cycle to work as many times a week as I could, but soon realised that although I loved cycling it was not conducive to arriving at work fresh and ready for a days work. By the time I had paid my fares, food at work and given most of the rest over to my struggling family, I had very little to show for my efforts. I then decided that for my own health and well being I had to make a break of it and live in the town where I worked. I saved up enough for a deposit and with the help of my future husband moved to a bedsit in the town, just up the road from Margaret Thatchers fathers shop in Grantham. I had housing benefit help with the rent, but £60 per week civil service pay didn't go very far after paying  utilities, so I usually survived on £15-20 (we are talking of the late 1980's) for food plus extra vegetables my hubby gave me. Even though money was very tight I was free from my dysfunctional family dragging me down, free to get my head around what I was going to do for the rest of my life.  

M.P. Tebbitt told the youth of my time to stop whining and get on your bikes, so I got onmybiketoo .

So I beg politicians of today heed my story , do not stop the mobility of our under 25's they need more than ever today to leave their homes to find work, Housing Benefit will be an enabler for them to do this.

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.

The Ongoing #NHS Treatment - A Modern Thriller-Farce Worthy of Hitchcock

If it wasn't so serious it would make a good plot for a Disaster Movie or a thrilling episode of Holby City.

Update:

Hubby has a now confirmed level 4 pressure sore wound on his thoracic spine. We travelled in an ambulance all the way to Stanmore on May 4th. [1 1/2 hours each way ] to get a MRI scan on Hubby's back, due to the local services not being able to co ordinate the making available of the Baclofen Pump hand held computer to be available , should the magnetic interference of the MRI send the implant in Hubbys body into a fault setting. The guys at Addenbrookes will not let Peterborough play with their toys, even though they come under the same authority. Sod what is best for the patient, lets play politics. Anyway MRI shows the wound is at bone level so it is a confirmed level 4 + wound.

During the following two weeks awaiting for a telephone call from Hubby's consultant at Stanmore  re the results, Hubby develops a large [ 25cm horizontal length x 15cm high/wide x 8cm deep ] mass / swelling above the wound. looks like he has developed a large hump on his back. So I make a rather worried call to the local GP, who to his credit makes a home visit on 18th May, sends us to the local hospital for an x-ray to rule out further damage to Hubby's spine. Well this is where it gets really farcical , we have to have an ambulance with a travelling paramedic because of Hubby's condition and being at risk of developing Autonomic Dysreflexia. The local managers in their infinite wisdom have told the crews that everyone who has this type of ambulance must pass through A&E first for them to do an internal referral. So we do get our x-ray but end up staying at the hospital 8 hours door to door for something that should have only taken 3 tops. REMEMBER HUBBY HAS A GRADE 4 PRESSURE WOUND not a good thing for him to be immobilised that long, no food or drink offered until it was nearly time to get into the ambulance to go home. So I had a terrible time when we got home , trying to calm him down as he was so upset with the way he had been treated, he was in unbelievable pain and I had to deal with a near AD attack. Good news though no further breaking of bones but still he is left with an undiagnosed problem on his back.

The Following Week:

We finally get a telephone consultation with the Stanmore Consultant, giving us the name of the spinal surgeon and the bad news that Hubby's case is not thought to be an urgent priority, they have no beds therefore he is going to have to wait at least another two months or until he becomes so ill that his life will be at risk. So if we have had the money and been able to have treatment in the USA whilst still on holiday we would have been treated straight away as they deemed it so serious, but in the UK it is okay to have an open large wound on your back for six plus months.  I am getting rather frantic now and have asked the local GP's for help, as I am struggling to cope physically with all of this as I have a very painful undiagnosed trapped nerve in my lower back. [ My assumption as to what is wrong] . Then we get the old chestnut well put him in a nursing home, sounds easy does it not. From what I have read there is a national shortage of specialist spinal injury nursing homes and they are not keen on taking on someone with a medical problem for which they would usually send that person to a hospital with.

Why Do I think he should be admitted now / immediately:

1. Skin seems to be starting to become reactive to prolonged use of anti biotic, red blotches on face, skin burning like reaction underneath pain patches.
2. Skin redness / erythema under dressing edges.
3. Malodor coming from wound.
4. Wound is now bleeding [where is blood coming from ?] and becoming concave.
5.   MRI scan shows wound is at bone depth.
6.  Wound not responding to dressing treatments, necrotic tissue still in place.
7. Time : initial wound sustained on February 6^th – no further on with the healing process nearly 4 months later.
8. No trained carers / nurses at home except for wife, and short dressing change visits from district nursing team, to attend to extra nursing care needed at this time, extra pressure relieving movement needed.
9. Periodic episodes of :- shakes like chills, sharp pains in head, blurred vision, increase in neck spasm, stomach cramps, tightness in chest area – not sure whether purely SCI related or pressure sore related, seems to have become worse lately.
10. Perceived extra loss of function / strength in arms and hands especially left side.
11.  Very lethargic and depressed . Can not seem to get any significant / beneficial periods of sleep.
12.  Has started to take small amounts of Diazepam again to just get through the day. [average 3mg / per day]
13. Pain levels have increased from background everyday pain that he lives with as part of SCI.
14.  Although persevering with the use of the alternating pressure bed, it causes him pain as it inflates / deflates under his back, and vibration sets off painful spasms in his legs. Extremely difficult to use the usual measures of side lying, as the pain in his shoulders becomes unbearable and his lack of full strength arm / hand function makes it very difficult for him to get himself a drink or do anything in bed for himself. So adding to point 11.

The Farce of this Week.

The Surgeon wants Hubby to have a CT scan locally to get more pictures of the bones at the wound site. So with the GP & the local Disability Advisor we organise the transport, remember Ambulance with a paramedic on board for safety. This was booked under the 2 hour urgent ambulance as there is no provision in the hospital transport procedures for this type of transport, you have two choices a transport ambulance crewed by first aider+ trained staff or the full monty an emergency ambulance crew. They didn't turn up, we tried again yesterday, they didn't turn up. They have no idea what this does to someone who is already very ill. He has to wear clothes that he wouldn't have to at home, all of which add to his pain levels. I have to get him dressed, even with log rolling that is painful for both him and me. Then he waits slowly getting more and more stressed about what is going to happen.  IT IS UNBELIEVABLY CRUEL.

We will try again on Thursday, the Disability Advisor has tried to explain the situation to the East of England Ambulance Service, lets hope they find some compassion. Today we have to make the trip to Addenbrookes in a private ambulance to get Hubby's Baclofen pump refilled, an hour each way in an ambulance with A GRADE 4 PRESSURE SORE. We tried to get the procedure moved to Peterborough but again no you cant play with our toys.

WHEN WILL THIS FARCE END? NHS WHEN WILL YOUR SYSTEMS PUT THE WELL BEING OF THE PATIENT FIRST? ARE YOU RUNNING THE SYSTEMS OR ARE THEY RUNNING YOU ?

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.

May be some light at end of very dark tunnel

Well what a week, last week was.

We got an interesting phone call from the city housing people to say there may be a fully accessible bungalow available soon in one of the prettiest villages near here. It has not been fully finished off yet so if we are successful, there will be many cat1 waiting list clients who will want, we may get the chance to have a say on what accessibility things we need to make it work for us.

Then on Saturday we received a letter to book an admission for the vital operation that hubby needs to get our lives back on track. I rang first thing on Monday and was somewhat disappointed as the earliest they could offer was 21st September, not long you say. Well it is when you are existing in a living hell, full of pain, no sleep, cant eat properly and feel like your own muscles are crushing your insides.

Then on top of that he has a urine infection that they will not aggressively treat until he is  in hospital prior to his operation. This makes him even stiffer and his spasms even more severe. It also means that 3am in the morning I am often found giving him another urine catheter.

Grit our teeth and get on with it as usual as no one in the medical profession, listens or hears our cries for help, no one gives a shit, and don't we know it.

Ground Hog Day...

You could re read my previous blog over and over again as that is life here in our household. Relentless same thing 7 days a week , no rest days for either hubby or me. Particularly bad day today, feel like walking on egg shells trying not to set off one of his outbursts born of pain and frustration. He is having one of those particularly bad days, "if they (medical profession) don't do something soon I wont be here for them to do anything" intimations of suicide, I listen to his angry words and wonder yet again if I could do more, feel like it is my fault, that we cant make anyone listen and most importantly act.

It was back in March over 4 months ago that he made the brave decision to let the medical profession operate on him again, to insert a Baclofen Pump. He has lost all faith that anyone can help him live again. His is not a life worth living at the moment, every breath = pain, every movement = pain. So here he sits in our living room watching TV (well looking through it lost in his own thoughts) sitting as still as humanly possible, waiting for the next painful spasm to nearly throw him from his chair. While I talk to my only companion this computer, trying to find answers to the unanswerable.

Why are people like Hubby left in the community in such pain when there are medical interventions that can and morally should be done urgently to stop them from going out of their minds.    

I'm here but where are the professionals ?

August 1^st  2011:

00:20    Go to bed. Manually lift into bed. Work on TDB’s legs to get him settled.

00:45    Finally get to lie down myself.

02:30    Reposition TDB’s legs.

03:30    Reposition TDB’s legs.

04:20    Reposition TDB’s legs.

05:30    Needs Catheter doing early. Sit up on edge of bed. 500ml collected.

07:00    Reposition TDB’s legs.

08:10    Get myself up.

08:30    Get TDB up. Make coffee + give him 250ml of Cranberry juice.

09:00    6 sprays of Sativex taken.

10:00    TDB does not want anything to eat. Wash and give shave. Sitting up difficult, breathing a struggle, hip spasms bad. Put him back to bed to work on his legs for awhile. Get him back up 11:00.

11:45    Catheter done, darker yellow 250ml. Stretch legs out again in wheelchair. Pain levels quite high again today, hip / leg spasms bad. Took 2mg Detrusitol.

12:15    Cook bacon + egg sandwich which he manages to eat.

12:40    Stretch TDB’s legs. TDB watching TV trying to keep as still as possible to avoid pain.

15:00    TDB put back to bed. Reports bladder snatching like he needs to go to toilet. Exercise given on bed. Takes 2 Neurofens.

15:30    Start to prepare dinner, corned beef stew.

16:30    Got TDB out of bed. Exercising him before hand. He then took 5 sprays of Sativex. Says he is coping with painful snatching of leg / hip muscles today but feels strong enough to deal with.

17:30    Catheter done early due to snatching feeling in bladder.

17:45    Dinner served.

18:30    Pudding .

18:45    Leant forward as feeling out of breathe and tight across chest. Put back again will watch for further signs of distress.

20:00    Detrusitol 2mg. Feeling flushed. Antibiotics taken.

21:00    Extra Catheter, mid yellow 250ml. Both go to lie down for a couple of hours.

23:20    Get up. Brush teeth get tablets ready.

00:00    Catheter done, mid yellow 150ml.

August 2nd 2011

00:25    Tablets taken. Back to bed.

00:40    Work on TDB’s legs, get to bed myself.

01:45    Reposition his legs.

03:30    Reposition legs.

06:00    Catheter 350ml mid yellow.

07:00    Reposition legs.

08:10    Reposition legs get up.

08:30    Get TDB up after working on legs. Says back & groin pain very bad today. TDB needs to wear shorts today due to cleaner coming at 10am.

09:00    Coffee & Fiber orange drink for TDB, bowel day.

09:30    Wash TDB.

Same thing day in day out 24 hour back breaking care with no breaks....

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 ?

ME the human hoist.

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.

Still here....living the same crap day in day out.

Have not written anything for a few weeks, as trying to just get on with it. Last week we had to stand down one of carers after a 04:00am argument over what he could and could not do. We like many in our position are having terrible problems finding the right team to look after Hubby. When the agency pays £7.58 per hour why am I surprised, when we get dead-end people in a dead-end job.

The system sucks, to get this provision of care you have to pass an assessment proving ongoing medical nursing need and not just social care need, but you don't get provided with professional people of that level, no you get people who have never done a days caring in their lives, people with lots of personal baggage, no personal discipline or confidence to do a good job. I know this is not everyone's experience, but it is ours.

Hubby is still struggling over the big decision as to whether to submit to the Baclofen pump operation, and I am desperately trying to hang in there giving him the support he needs to make what I think is the only decision without pushing that down his throat.

Meanwhile he is having a horrible time with the pain and spasm, talking regularly about ending it all, the story line in Emmerdale is not helping either. Ever since the x-ray machine at Peterborough City Hospital crushed his left leg his rectus femoris muscle looks like it is ready to pop out of his leg, which of course is extremely painful on top of his already trashed knee.

I since we now have carer cover am actively looking to get back to work as a Project Manager in the engineering fields. But I know as soon as someone sees that you care for someone they run a mile. It is their loss I know , but still hard to take as I do have a pretty sound CV with oodles of experience.

So to give you a picture of what it is like for us at home, lets take yesterday as an example,

Having spent Saturday night up at least once an hour to adjust his legs and try and make him comfortable, 06:00 arrives so his urine catheter has to be done, so I drag my tired bod out of bed yet again, get the stuff, sit him up over the edge of the bed, drain off the urine lift him back into position on the bed, physically , forcibly straighten his legs, bring up his legs again, put the cushion pad in between his knees, stuff pillows on his right side to secure his legs from flopping over, flip his pillow, flick his toes as they constantly cramp. Then I can flop into bed again for a few more minutes before he asks for help again. This is how it is constantly through the night and we can not get the carers to do this so I can get some real uninterrupted sleep, instead like last night they stand watching me doing it all and when we try and get them to do it they mess it up hurting him terribly. Last time I looked I am not superwoman! why am I so...oo special to be able to do what these carers can not? Utter bollocks..

just after 08am we get TDB up but he is in so much pain that he very shortly needs to go back to bed for further stretching etc. No wonder my arms are like a Russian shot putters. We were supposed to get a visit from relatives y'day but had to put them off as I knew I would not be able to cope with his bad mood being in such pain and their need to be entertained. This is how carers/disabled become so isolated. So the day went on bed up, bed up over and over again.

So we are still here living the same crap day in, day out....