Posted by Jenni Remnant and Libby Morrison
So, the word ‘challenging’ is used primarily to describe aggression in learning disability and mental health settings. It keeps the focus on the service user, as is standard (see ‘Person centred planning'). But I would like to consider ‘challenging behaviour’ in terms of being a carer, and in terms of public health and public health research.
Though ‘challenging behaviour’ tends to describe a certain type of behaviour, personally I find a lot of behaviours challenging as a carer – and I expect that others sometimes find my behaviour challenging.
In 9 years of caring for people I have had excrement thrown at me (once an absolute money shot got me square in the face), I have had my hair pulled with such force my scalp ripped, my car has been attacked with a plastic tennis racket, I have been threatened with a kettle of boiling water and a hammer, in addition to being spat at, chased and verbally abused. In many of these roles I was paid a higher hourly rate (one motivation for working in these services) of up to a couple of pounds over national minimum wage. Peanuts to cashews if you will.
This of course is challenging, but I knew exactly what I was signing up to, and if I’m honest, I like it. I imagine this is wrong on a number of levels, but I liked it when people were angry, because a lot of the time I felt they were justified in it. What an oppressive system they live in and are forced to submit to. Admittedly, I like it less when the anger is directed at me, but personally, I find it easier to feel genuine respect for those who fight.
There are two levels to what I personally find challenging. One is a collection of behaviours from service users. The other challenge comes from being angry at myself and feeling guilty that though I can understand and rationalise on a theoretical level that I shouldn’t judge or feel negatively towards people, I can’t feel it. I get so frustrated when I’ve suggested someone goes to the toilet and they say that they have when they haven’t, defecate instead on their bedroom floor and laugh while you clean it up. I feel humiliated when someone starts to masturbate when I try to give them support cleaning their bedroom, go to the supermarket or cook their breakfast. I feel disgusted when someone accesses porn that simulates rape. I feel scared when I’m lone working and a service user follows me around a service. I feel angry when I get a service absolutely spotless and someone tips instant coffee all over the side and doesn’t wipe it up and it goes into those horrible rock hard little lumps on the side… the list, I’m sorry to say is endless.
I worry that it is obvious when I am getting frustrated. A service user once announced to me “I have rights” when I asked, for the fifth or sixth time that day, to use the toilet as he hadn’t been for over 8 hours. He spent around 30-45 minutes in the loo each time, but didn’t use the toilet, with me outside the toilet issuing instructions. I agreed with him – I told him about Maslow’s hierarchy of need, and took from my pocket a summary of the universal declaration of human rights (I always have it on me at work), and in that tired, frustrated, trying-to-maintain-the-appearance-of-calm way, that absolutely patronised him and highlighted that in this situation I ultimately held the balance of power – went through them and explained how trying to support him in hygiene was not relieving him of his rights. I was angry at him, I was angry at myself.
The other challenge is where to go with the above information; who wants to hear that carers are human and get challenged? Which local authority wants to hear that a *free* informal carer finds it challenging to look after a husband who no longer recognises them? What manager wants to hear that you were woken up 6-7 times through the night on your sleep in shift and so feel too tired and drained to work through the following day? Your mental health as a carer is under strain. I currently do less than one shift a week and still sometimes struggle.
Then there’s your physical health – despite meticulously clean staff teams where I have worked, I have often worked with people that for whatever reason do not wash. People that I have worked with have often not washed their hands, don’t shower, and don’t do their dishes. Sometimes when they do their dishes, they don’t do an amazing job. It is patronising and disempowering to re-wash people’s dishes for them. I take in my own cutlery and crockery – and have been pulled up on it a number of times because it’s insulting and stigmatising.
There is a huge amount of surveillance around caring, in addition to judgement. Sometimes it feels so hopelessly fruitless – permanently rolling a stone up a hill for it to roll back down again a la Sisyphus.
What does this mean for public health and public health research? To me it means a necessary interrogation of the homogenising of service users, and the black and white dichotomy between informal and paid carers. An interrogation of the system that removes power and control from a huge number of people – and that’s not even starting on the lack of decent union representation and zero hour contracts – but how?
What are the right questions? I don’t know what the desired outcome is other than that beautiful idea of health equality and social equality for service users and carers – or how as public health researchers we would approach this messy and difficult area and do it justice – but we probably should.
I was very excited to see that Fuse has been advertising a PhD studentship that focuses on carers, and will be fascinated to see what is learnt from that.