So why am I still needed to help him.
- 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.
- 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.
- 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.
- 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.
- 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 ?