How the NHS failed me and mine.
What it did, to the most important person
in my life and how it could happen to you unless
we do something about it!

Wednesday, 14 March 2012

Loss of Innocence (Part 3 -Aftermath)

As I drove away from the Hospital that Friday afternoon I felt euphoric, in that I had repatriated the women I loved from what seemed to me a prison. But I realised almost immediately that some practical and needed changes to our lives would be needed, at least in the short term. What was running through my head, were the words J' had related to me from the physio' she had seen on the third day of her ordeal, that "you know you will have to come back in about five years for a revision, when that wears out".  Had she heard right? But surely no-one in her position (the physio) would make such a statement without there being some truth behind it?

The Hospital had provided us with crutches, on loan, but they would be an encumbrance in our small and somewhat over furnished flat. I had then purchased a folding 'zimmer' frame for J' to use in the flat, especially if she was alone. I had also bought a bath seat to enable bathing, which in the short term had not to include much in the way of immersion of the wound. But the first things she yearned for had to addressed. A long awaited visit to the toilet, a decent meal, a good night's sleep and of course, her legs shaved, as she felt like a 'yeti' from the knees down!

Chanting the phrase, 'good to heaven, bad to hell' (which leg, in which order first) she got up the one flight of stairs, with my help. From that day on with me behind going up, in front going down. I do it to this day, although it's importance has waned. Having got her in the flat I padlocked the wheelchair to the banister outside, to ensure it's presence the following day, because there was too little space inside. In fact I removed all extraneous 'trip' spots and paraphernalia from the flat to mitigate the chance of a fall. I then began the process of turning myself into a carer and nurse. In many ways I found it easy; she was so precious to me I did not care about the commitment, or the attention to her intimate needs that were to be thrust upon me. In some ways I welcomed it; she deserved my undivided attention. She had loved and supported me for years and whilst I had always reciprocated, I had without doubt been selfish on many occasions and taken her for granted. I had stood back from myself during those days when I felt such loss and impending doom, and made a pact with her that whatever may become of the future, it would be one where her well being was predominant and not mine, as I felt it had been the opposite for too many years.

And so it began. I bathed her carefully, whilst she sat on the new bath seat. I shaved her legs and she took a mild laxative to reintroduce the process of peristalsis that had been lacking for a week. I got her an extra pillow so as to enable her to be more comfortable and then we had supper; a Chinese meal that she had longed for. Little did I realise, that by pandering to her desire, I was compounding the errors made by the Hospital and pushing her blood glucose through the roof. However that was to be for the future.

It was a blissful weekend in many ways. We went out of town on the Saturday and had a quite lovely meal, with me pushing her into the restaurant in her wheelchair and then helping her into a normal chair, realising as I did it, the problems disabled people had to endure to gain access to so many places. I was to find this irksome after a short while and thus became a harsh critic of establishments that failed to take account of the needs of wheelchair users to enjoy simple pleasures without the need for a small team of weight lifters in accompaniment. How blind we all are to others, when it does not impinge upon our lives. But this bliss was tinged with some sadness. I hoped that J' would be able to walk quite soon, hoped her recovery would be rapid but I also realised that it would be a long hard road and it was likely that she would never be able to ride a horse or a bicycle, partly because the consequence of a fall, with a big metal ball on a stem instead of her greater trochanter, would be too greater risk for me to let her. She had been doing both since she was twelve, and generally viewed horses as superior to humans', most of the time. Then I had to face the problem of my work whilst fulfilling the needs of her carer. It would be a long time in the future when I could leave her alone without a pounding heart.

And so I reached a compromise, at least for the next six weeks before her post-op appraisal. I worked in the mornings and came home in the afternoon to feed her, help with physio exercises and take her out to enjoy what was left of summer. I worked mostly in fear, not really giving it the attention that I should. Ridding myself of the myriad tasks that I had micromanaged before, because my ego would not allow me to delegate to others. I was the only one capable I had always thought, and I lacked the confidence to allow others to fulfil my many roles. But now, I no longer cared about the pursuit of clients or wealth, I just wanted to make her whole again, whatever the cost. It turned out to be high, but I don't think I would have done it differently, even given another chance. Then again all of us often feel that if we needed to start over we wouldn't want to start from here, but we cannot turn back time although on occasions in the next few months, I would often wake up and think it was just a bad dream and I would look to my left and see the J' I used to know, not the one I now had, who always looked as if pain was her only emotion.

We got her stitches removed on the next Monday. late it seems because those damn paper clips that pass for sutures today could hardly be called 'stitches', should have been done at day five apparently as the flesh had started to 'grow' over them. I winced for her as they were dragged from her flesh by the GP Nurse. She re-dressed the wound which was healing well, but still resembled a long, red 'slash' in her thigh. I kept thinking why did it all have to be so disorganised, why was there not some sort of 'plan'  for the aftercare of hospital patients? Then I remembered there had been little in the way of plan right at the start. Maybe someone had written it down on the back of a 'fag 'packet somewhere, and then lost it; well that's how it seemed. Everything had the appearance that it was left to 'kismet', rather than any sense of order or commitment to the patients well being.

We took to walking along canal towpaths; they are always flat, except for the locks, and locally there weren't many at all. She would walk with crutches and after some practise, and a little coaching in co-ordination, she became adept. As soon as she tired I would put her in the wheelchair and  return from whence we came, back to the little red van. The wheelchair was the 'backstop', the means of letting her learn to walk again, without any risk of not being able to return. Soon she was able to walk with just the one, and one day in late July when I had pushed the chair into the town, as we often did, I purchased for her a 'glamorous' walking cane; all glitter in the handle and a shimmering green on the shaft. After that she cast aside the crutches, and the memory of whence they came; well not quite.

She had been traumatised by what had occurred,to the extent that I could not get her to open up to me about the events to which I was not witness; the pre-op phase, the morning of the operation, the conversations she may (or may not) have had with the Consultant, whom I found out was an expert in, err... hands! It was frustrating, I even got angry a few times, but I realised the depth of harm she had suffered and gave up quite quickly, realising that it was too soon, and that it may never be the right time or perhaps she found it so bad as to have erased it completely.

Eventually the days and hours passed and we came to that moment she hoped for, the day she saw the Consultant. Her main concern being that she could drive once more and return to work. I hoped that he would not allow it, but she put on a 'show'. Still believing, I am sorry to say that this man 'knew what he was doing', and that she wanted to be back where she used to be, and that he would give her license to be so. After ages of waiting we were shown to a cubicle, in the clinic. We sat there for what seemed a long time, me working myself up to a level of stress I had only felt when I was waiting to see if my second child would live, shortly after birth. J' on tenterhooks to see if he would 'sign her off sickness'. Then the great man arrived; all rugby club tie, shiny tan brogues and Oxford striped shirt. What a pr**k he was. Taken aback by my request to see the X-ray, he blustered his way through precisely five minutes, of explanation of what J' should do, which comprised mainly of walking to exercise the leg, but not to bother with any physiotherapy; it wasn't needed. Just "walk up and down for me please, oh that's fine. Any problems go and see the GP". I was still looking at the X-ray and before I could say anything, he was gone!

I had been confused. The image did not compute with that which I expected. Although I had believed J' to have had a hemiarthroplasty, the image showed something that to my untrained eye looked like a total hip arthroplasty. I wanted to quiz the Consultant, but he had already moved on to his next patient; it was the 'little old lady' we had sat next to in the waiting area, and guess what was on the screen at the end of the cubicle? That's right, that same image I had just seen. Even more confusion, or perhaps they just put up the same image for all the screens in the Fracture Clinic, with hip replacements. At that juncture, it would not have surprised me at all.

We left, J' clutching her discharge note, signing her as 'fit to work' together with a letter for the GP (sealed) and me clutching her hand, in a welter of anger, confusion and in need of strong drink. I felt patronised, sidelined and deeply suspicious of the only answer I had gleaned from this Consultant, who seems not to have to consulted in any way with the person(s) with whom he needed, and in answer to the question of "how long will this prosthesis last?", he said, with a straight face, "forever". J' was pleased she had been allowed to drive again and could return to work, which frankly filled me with dread.

She was I realised, simply shutting everything out that she did not wish to face. The events had closed down her usual scepticism and the questioning of matters that she usually displayed, and in it's place was an an almost subservient trusting attitude. It was as if the NHS and Consultants would not undertake any procedure that was likely to provide an outcome that was less than good for a patient. In the coming months that was to change. Change completely, once she found out what they had done, why, and more importantly, what they had forgotten to do. And what they had forgotten was going to impinge upon her life, for all of her life.

Again, dear reader, I crave your indulgence. This story has to be episodic and the 'aftermath' continues again shortly. It is called 'the complaint'.

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