Thursday, 25 June 2015

How to create an invalid

I am very disturbed by the way things are going following S's fit. Already, less than three weeks since it happened, she is being treated like an invalid. No serious attempt to discover why she has practically lost her mobility has been made. It took two weeks and a very determined District Nurse to get her x-rays which have finally ruled out any fractures to the hips or pelvis. The District Nurse's  intention then was that S should receive intensive help from physiotherapists to try and recover at least some of the mobility that she had before the fit when she was capable of walking 5 miles a week. But no-one is really interested in doing this. It seems to me that this is a result of the widespread if unspoken assumption that there is no point in wasting resources on someone with dementia.

We now have two daily visits from pairs of 'carers' who are not seeing an individual person who still has some abilities but a body that is incapable of doing most things. The less S has to move or be moved the better, as far as they are concerned. There is talk of hoists, hospital beds and commodes which she can be wheeled around on. Because they are now involved, I can see that, even though we will soon regain access to two bathrooms (a new one we are having put in downstairs and the original one via a stair-lift) the regime of  minimal movement and bed baths will be hard to move on from. Ironically, I'm still the one who has to do any lifting and moving because we do not have the 'right equipment' yet.

An assessment by someone who gave no evidence of having any particular expertise resulted in a decision, it seems, that the mobility issue was probably a result of what was going on in the brain  -  now there's a surprise  -  rather than any physical problems with parts of the body. The conclusion was therefore that physiotherapy would not help. But, of course, as everybody should know, the brain and the body are intimately interconnected and it's quite possible that repeated physical activity of any kind could help to restore some of the previous connections that may have been damaged. One of the things that perplexes me and the district nurse is that after the fit S was able to use stairs and the loss of mobility occurred in the evening of the day after the fit. No-one can explain this, and, worse, no-one is remotely interested.

Once before, with my help, my brave and determined wife re-emerged from a total meltdown, which also involved mobility  -  in addition to extreme agitation and aggression, paranoia, and torment  -  to become again a person who in her own ways got something out of life and was as physically active as she was able to be. I want to try and help her to do something like that again. But 'they' seem bent on creating an invalid. That is their expertise. And what an appropriate word that is, by the way. It's no wonder that they stopped using it. It gives the game away.

Wednesday, 10 June 2015

S has had a fit

This was the first time I've seen anything quite like this. I had left her sitting on the the toilet waiting for the mobile hairdresser. When I went back in after a few minutes she was still sitting on the loo but twisted up. She looked as if she was wringing her hands and she looked very agitated. She was totally unresponsive. Also her breathing and a little bit of coughing suggested she might start to vomit.

Then she slipped down to the floor. I couldn't stop her but was able to stop her banging anything in the process. She was in an uncomfortable sitting position against the radiator but I was reluctant to move her in case we ended up in a worse position. Her breathing sounded quite laboured and gurgly so I decided to call 999. It wasn't considered 'life threatening' so it took a while before an ambulance became available during which time the operator stayed on the line though I can't say she said much. She asked but I was unable to say whether S was asleep or unconscious. Then a 'volunteer first responder' arrived. Finally, the ambulance. By this time things were looking a little better. S opened her eyes a bit (she normally has them closed for much of the time).

They decided on the Accident and Emergency department at our large local hospital. S's daughter had arrived by now which was great and she followed us to the hospital. In the ambulance S looked better still, holding her head up normally, not back on the pillow and with open eyes for much of the time.

I won't bore you with a full account but in the 5 or so hours we saw many different people in a variety of uniforms, most of whom did a little bit (mostly tests) then went away. Blood tests suggested she might have a slight infection. They gave her a chest x-ray which was fine and talked of testing her urine but dropped this idea, probably because they realised it would not be easy. Blood pressure, pulse etc were all in the normal range from almost the time we got there.

Eventually, they said she could go home but we could contact them if there were any further problems. I was fine with that.

She is not back to normal mobility wise yet but can stand and walk. She's eating normally. The stairs are more of a challenge than usual so we stayed upstairs on the first evening and had to stay downstairs yesterday as she just couldn't get up the stairs.

Such events are always shocking. I know things might get worse again but at the moment I'm fairly hopeful that this might just be a one-off. She has been prescribed antibiotics for the suspected UTI but unfortunately the first med prescribed made her vomit so I'm hoping to get a replacement by this evening.