Not sure how to even start to type this. Words skit around, like random bugs /moths in the now chilly candlelight. Wrong, inappropriate. Out of place. Fucking inadequate. It’s exhausting being in a place that is so impossible to make sense of. A space so beyond awful that the usual rules of anything are suspended. It’s a terrible space to be. But one we can’t escape from.

Big sis came over today. We made a start on LB’s clothes. The ones on his bedroom floor. A mixture of ‘unit clothes’ and ‘pre-unit clothes’. We made a superficially good start with a ‘pile to keep’, ‘pile to shift’ and ‘pile to return to school’ (LB had a bizarre habit of acquiring school uniform without ever appearing to come home in anything other than what he’d left the house wearing). The top layer we dealt with was clothes from the unit. The boiled stuff. Clothes washed so regularly and at such a high temperature, they were like fake clothes. Slightly smaller, slightly tighter and no longer resembling LB. But hey, I admire other people’s efforts at hygiene when I fail so regularly at my own (particularly now as baths are out of the equation).

The ‘keep pile’ at carpet level (yes, we are that cluttery/cruddy) had t-shirts from four months ago that smell like LB. I syphoned some off into a pile to remain unwashed. The Homer Simpson t-shirt he always slept in is rich with LB whiff (a mixture of body odour and deodorant as Tom describes it). The power of these smelly smells is indescribable. They take me straight back to the days of saying ‘Phwaor LB, you stink mate’. They create a here and now presence of the dude that I know is temporary. An almost false, teasing way of trying to hang on to his essence for a tiny bit longer.

This is kind of in contrast to our experience of losing him so catastrophically. Without warning. Of dealing with seeing him dead in such terrible circumstances.  We never saw our dude again outside of institutional spaces. But here at home, with these clothes, I can start to remember him as he was. Not what he became. The potential fading of the smelly smell of the t-shirts is, in itself, heartbreaking. But we can’t stop it. The smell is probably already diluted through a combination of fresh air and my tears this evening. ‘Maybe put ’em in a sealed plastic bag’, suggested Rich, love him.

In the background to today’s smell journey, we received the ‘TOR’ of the NHS internal investigation. TOR???  [Rage]. Terms Of Reference. These ‘terms’ decided by some NHS bod as s/he hands out industrial size brooms, layers of carpet and buckets of tipex. Pre-written scripts carefully worded (and drenched with jargon) to say absolutely nothing of any meaning.  The predicted outcome; a collective shrug with a ‘We didn’t do it guv’ chorus. Internal investigation? What a farce. With a right old pong attached to it.


2 thoughts on “Smells

  1. Hello Sara, my son recently had an accident in the care of Liverpool Labour Council Adult Social Care – it resulted in 4 operations – he’s had three. the documents in place (Community Care Assessment/Care Plan) were ignored and worked outside of all legisilation.

    I was very upset (to say the least) and for this reason and not because they wanted to they held an investigation.

    The officer conducting the invesigation was sanctimonius, I told him I had no confidence in his work and I knew what the out come would be.

    I received the report which was full of full of errors and red herrings. I replied, pointing out he had not give me an explantion as to what happened (my son is non verbal) – his reply ”go to the ombudsman” The politicians running the city also didn’t want to know all turning their back hoping I will go away I received no support nor did my son.

    In fact the Mayor of the city and the cabinet member for adult social care sent me a solicitors letter telling to stop emailing them – I was asking for an explanation as to what had happened and asking why did they work out side the law…… they didn’t like my questions.

    The reason Liverpool Labour Council held an investigation was for their benefit not for the best interest of my son or his family…………

    Justice & Recognition for LB……xx……

    My love and support to you and your family xxx – ”you are doing good”


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