From the inside

As the traumas of my wife's home care was beginning to be a thing of the past, and during the time I was seeking out that nursing home for her, the early 90's recession was diving into some dark places work-wise and I was made redundant. The construction industry, my bread and butter, was particularly hard hit and the firm I worked for shrank to an eighth of its former size. Nobody was wanting buildings designed, so no one wanted to employ out of work architects. 

For two years I applied for almost any and every job in the area and got endless refusals, but then I got a job as a care assistant at a unit operated by the local NHS Trust. It was part residential part respite care for young adults with severe mental and physical impairments. Why did I go for the job, because I needed an income and a working environment, why did I get it, because I persuaded them my experiences nursing my wife meant I had the basic skills needed for the job. So here I was on the inside of the official care system, almost by accident, back in a familiar situation of nursing highly dependant people, but this time with the chance to see a much broader spectrum of issues. 

As I got used to the routines and individual needs of the people I was helping care for the dedication, skill and empathy of nearly all staff was constantly demonstrated for those in their care. I learnt of the variety of disabilities those we cared for exhibited and how to best address their needs. I also saw what a hidden world it was and how people on the outside knew so little about that world and those being cared for.

There was also the chance to see the other side of the relationship between those being cared for and their families. Something I had seen with my first wife's brother and his family. It was much more complex, variable and fraught with volatile stresses than I could ever have imagined. Within that there were excellent, ordinary or downright exploitive and/or abusive relationships. This was minimal where the resident was only infrequently visited by their family, but where the person came in for respite care those experiences were very in your face. Some families gave their all for the severely disabled child, others used them as a money train and treated them as though they were in a Victorian asylum but inside the family home. One family used to tie their child with a lead to a washing line in the garden so the child could walk up and down, and keep them in old and unsuitable cloths despite the benefits that got for the child. One father said he kept a baseball bat by his chair to threaten his severely disabled and disruptive son and keep him at bay. Every so often there were accusations and counter accusations about who had been responsible for bruising, loss of clothing, who had said what about who in terms of arrangements, even the emotional shock waves from unrelated disputes and marital conflicts within families playing out when family members came to visit the person we were looking after.

This threw a disturbing light on some of the nursing and care homes I had been visiting to find a suitable place for my wife and later to find a carers job for myself. Some nursing and residential care homes seemed dreadfully depressing and incompetant waiting rooms for death. Others were vibrant communities, others like poorly run B&B's smelling of cabbage and disinfectant. 

While I was doing this job my wife died. It was a long and unpleasant last episode to her life and the end was a welcome relief to her and her family, and all of those who had known her in the fullness of her life. She had spent the last few years not knowing who anyone was and most likely not knowning who she was or had been. She seemed just a body with basic functions persisting with no conciousness of the world around her. What I had seen of the excellent care she received seemed in great contrast to the quality of life she had been left with. It was one of the inevitable internal infections that eventually overcame the bodies natural defences and ended what had become a very sad and meaningless remnant of life. She had hated what could become of her and I was so glad that her perceptions early on had been damaged so that she never seemed to realise what was happening to her.