I’ve just this evening returned home after a rather horrible couple of weeks, so forgive me if this time my blog is more serious than you have come to expect.
In my novel, Right to Die, Adam O’Neill is a young journalist with a bright future when he is diagnosed with Motor Neurone Disease. He’s determined to hang on to his independence as long as possible, but a car accident precipitates him into hospital. There he has time to reflect on the difference attitude makes to the way he is cared for.
But it’s not until he’s back in hospital sitting beside his mother, following a massive stroke, that he consolidates his opinion: ‘I do not want to be pitied by the gentle ones, resented by the hard ones, tolerated by the indifferent ones.’
I wrote this several years ago now, but during the past couple of months I’ve had firsthand experience of the gentle ones, the hard ones, and the indifferent ones. And kindness and compassion really do count.
Some health care professionals radiate care and empathy. For them the perfectly positioned pillows, the smiling encouragement, the modulated voice, seem intuitive. But there are others who perform their tasks (no more than that) with tight faces, no explanation and exasperated gestures. Yes, even when relatives are present.
Mother may not be able to communicate effectively in words much of the time, and she may be clinging to the politeness of 90 years, but she knows the agony of rough handling on arthritic joints, and the desperation of waiting 25 minutes for a bedpan that was promised ‘in a minute’. She can still convey that awareness to me. And we, her family, certainly see and know when the attention (I refuse to call it care) is begrudging and the expressions are grim.
Expertise and technical know-how are important, of course they are. But it’s the way things are done that raises the bar – converting necessary treatment into compassionate caring. I’m with Adam: I don’t want to be on the receiving end of hospital ministrations at all if I can avoid it. Who does? But if I am, spare me from the ‘hard ones’ and the ‘indifferent ones’.
Mercifully we have now rescued Mother and she is in her second full day in a wonderful establishment where she is surrounded by loving care, and the centre of an orchestrated effort to give her a life in spite of her limitations. The difference is unbelievable. I have come away to allow these dedicated people space to get to know her (without me as interpreter) and I’ve done so with confidence and peace of mind. At last.
After a couple of months of living in something like a parallel universe I hope to pick up with life as I knew it before disaster struck my mother. Once I’ve caught up on sleep!
Tags: compassionate caring, Right to Die
I am so glad to read that you have now found GOOD CARE for your mother and sad, but not surprised, that it could not have been taken for granted in the first establishment.
To care for another is one of the most privileged things that can be asked of us yet it is so under-valued in our society, where you can earn twice as much money for cleaning an office as you can for caring for someone who requires it.
When I returned from maternity leave I found that most of my work as a District Nursing Sister was being carried out by an nursing assistant – my priority was no longer to be patient care but rather to ensure that the computer records and admin were correct. My nursing assistant attended patients, I attended meetings. I didn’t last long.
I now occasionally do bank shifts for an agency, as a carer, and love providing basic care again but am so saddened by how low clients expectations are, based on the reality of the usual service provision. Carers are being asked to do the impossible (you can’t be at two clients miles apart at the same time; you can’t prepare, serve and clear up a meal in half an hour) for a meagre income and clients pay handsomely for a service that is often not provided.
There are many, many wonderful carers providing excellent standards of care but there are also too many people who need an income and care more about their payslip than their patients. To be vulnerable and in need of care today, is to be at the mercy of a care lottery – I’m glad your mum now seems to have landed a lucky ticket.