The people who cared
for my mother hadn't
a clue who she was
I read Victoria Law's emotive paper in SR (25 April) and was horrified. Not because I am naïve. I hadn't imagined before reading her polemic on a system that 'forgets the people within us' that all was well with the world and that cases of neglect were aberrations in an otherwise competent and concerned profession.
No – I was horrified because 12 May will be the 15th anniversary of my mother's death and I really had hoped that things would have moved on.
My mother suffered a series of strokes that led to a five-month period in hospital and a nursing home, from which I had to fight tooth and nail to have her released to live with me at home for what turned out to be the final seven months of her life. I will not rehearse the horrors of those five months, but suffice to say that degradation seemed to be the name of the game.
When you train soldiers, you strip away the humanity of the enemy. My grandfather told tales of one of those famous football matches at a New Year during the first world war. The troops didn't only cross the line to play together. According to him, they had a dram together for Hogmanay. As a strategy, it was disastrous, because once the lads knew each other's names, it became so much harder to stick a bayonet through each other's guts.
Perhaps that's why, despite daily exhortations to call my mother by the name she had been known for over 80 years, nurses and 'carers' insisted on using the first of the three she'd been given. I even wrote her 'real' name on the label above her bed, without much success.
Perhaps if you know the real person, the person within us, you won't be able to ignore the buzz for a bedpan; the uneaten food left because a left hand can't deal with a slab of meat, even if there was a hunger for it; the dentures left unwashed until a visitor susses the situation. I would like to look at the training of carers.
When I was still journaling on a regular basis, I wrote about what Glasgow University and the Royal Infirmary saw as a revolutionary new attitude to training doctors. They were to get lessons in the science of the bedside manner – they were to learn to empathise with their patients. Does anyone teach people in the 'caring' profession to care? The blame is sometimes placed at the door of 'degree nurses', who know all the theory but don't recognise 'the people within us'.
A lifetime of taxes, a sold home, a family's inheritance waved goodbye
to – few of us are charity cases but if we were, our human dignity
should remain intact.
I'm very happy to have highly-trained nurses. The more complex medicine becomes, the more I want them knowing exactly what they're doing and capable of decision taking when a doctor isn't around (which is much of the day on any ward in Scotland). But why do people go into nursing? Or 'care work', which is not a highly-trained sector?
One of the modules I'm teaching at the moment is personal development planning within an HNC business administration course. I found an online personal development questionnaire devised for nurses by the NHS and asked my students to give it a go – a good exercise to find out what attitudes 'human resource' departments want in their staff. It was rigorous – my students thought it was 'intrusive' – but I'm sure it produces the results that the NHS's HR people want. But there wasn't any element of probing of their empathy levels. Of course there are those who care – I'm very lucky now to live in a rural area where knowing is caring. But it is clear from recent news reports and from Victoria Law's excellent paper that too many 'carers', at all sorts of levels, just don't.
My mother was clever, witty, strong-willed but paradoxically shy, and concerned with her appearance (she'd been going regularly on the train to Glasgow to get her hair done until a couple of weeks before the first big stroke – and it wasn't the old lady cauliflower cut, either). She read widely and loved crosswords and puzzles. She'd use algebra to work things out, which really annoyed me as her innumerate daughter. She could wind me up very easily but was caring and loving to colleagues and friends.
Did anyone in the hospital or nursing home know any of that? Probably the very dedicated speech therapist got a glimpse of it – but those who shouted 'Margaret' at her and left her hearing aid in a drawer on her paralysed right side hadn't a clue who the person inside was. And cared less.
Yet in today's jargon, she was a 'client', or perhaps a 'customer' – and isn't the customer always right? Who are these places being run for if not the 'customer', who in some way or other is paying through the nose for a non-existent service? A lifetime of taxes, a sold home, a family's inheritance waved goodbye to – few of us are charity cases but if we were, our human dignity should remain intact. Do we choose the right people? Do we train them properly? Do we pay them enough? I don't know. But I'm fearful enough for my future that I'd like someone to start making 'yes' the answer to those questions.
I don't want to be lying in some hospital bed with a grim sense of déjà vu, knowing that buzzing for help is futile, and that having the Grim Reaper at my side is a preferable option to the 'carer' who tells me she's too busy.
Marian Pallister is a writer and tutor