Wednesday 25 September 2013

Turning the air blue

Many families who have a loved one living with dementia will know the moment only too well when a perfectly innocent greeting, question, conversation or even silence is broken by a swear word that prior to their loved one’s dementia would rarely, if ever, have been uttered.

Whilst those words sometimes come from family members themselves (we all get stressed sometimes!), it is potentially even more likely to have come from the mouth of the person living with dementia. They may have never previously used such language, and at the time of using it, there may be no outward sign of anger or frustration to make the use of it more understandable.

As a family you may be upset or irritated by its use, particularly if it seems to be directed at you. I’ve known families who have found such language so difficult to cope with that they have stopped taking children to visit a loved one, or indeed stopped going themselves. So why does dementia manage to produce this type of language from previously innocent mouths?

For me there are lots of reasons, but I will start with the most obvious. Think for a moment about what living with dementia might actually entail. Put yourself into the shoes of someone living with dementia. Close your eyes and imagine how they feel and what every day, hour and moment is like. Take a look at this guidance from Kate Swaffer, a lady living with dementia, to help you.

It is notoriously difficult for someone without dementia to actually accomplish this task, and even if you do, you are likely to have only hit the tip of the iceberg in terms of what dementia is REALLY like. I suspect, however, that after such an experience you might feel the need to use some pretty extreme language yourself, and if you do you are potentially a step closer to understanding the relationship between dementia and bad language.

There are other more specific symptomatic reasons too. Dementia is associated with a loss of inhibition for some people, therefore as well as being more free and disinhibited in their actions - for example in their sexual expression (as I wrote about here) - their language will potentially also follow suit. Dementia is likely to produce huge communication difficulties too. When someone cannot find the word or phrase that they need, a swear word may sum up how they are feeling, or indeed may be the only word that comes to mind at that time.

Dementia is characterised by a range of emotional reactions, and each one is likely to have bad language attached to it, mostly notably anger. The swear word(s) may be accompanied by physically lashing out, or the person may appear outwardly completely calm. In the latter example swearing may seem inappropriate or unnecessary to us, but who are we to say how the person with dementia is feeling, what they are going through, and what the correct language to express that is.

Like it or not, bad language is a form of communication used by many people. It is commonplace in society, on TV and in films, and indeed for some people forms the basis of how they express themselves in a range of situations, both positive and negative, on a daily basis. Yet somehow we feel it is acceptable to hear it from a builder, or a teenager on the street, or a couple who are arguing, but not from a person with dementia.

Perhaps that is because someone with dementia may be older, and therefore we have different expectations or standards of conduct that we expect from our older generations. Or perhaps it is because we take it too personally, feeling that such language is being used to attack us, when in reality it is entirely due to how the person is feeling or experiencing their dementia in that moment.

Swearing is labelled as antisocial in dementia care and considered by many to be a ‘challenging behaviour’. Yet have the people who are passing these judgements also considered the ways in which their own actions, however well intentioned, might encourage the production of such language. Taking away someone’s independence and their chance to achieve could irritate them. The fact that they need help with personal care, like incontinence care, could feel very upsetting or humiliating.

Most crucially of all, failing to see the person and only seeing their dementia, and depriving them of person-centred care would quiet justifiably lead many people to resort to swearing as a means of protest and a cry for help. Again, put yourself into their shoes – how would you feel? Maybe you’d want to utter a few uncharacteristic words too?

The delicate nature of our own emotions can lead us to take such outbursts to heart. My dad sometimes used language during his years with dementia that no one had heard him use before. Sometimes he would look you straight in the eye and use it, and it’s hard not to feel shocked and hurt. I know my mother found a particular word that my father used towards me on one occasion very hard to take. I, however, smiled and dad duly smiled back – before long we were all laughing again.

Defusing the situation can be important in those tense moments when the air turns blue. Also looking for any underlying cause as to why the person has used bad language, such as trying to express an unmet need or protest at a particular action. On that occasion with my dad I was giving him a manicure, a necessary task to stop him from scratching his skin until he bled, but not an experience he had ever enjoyed.

His language, though extreme in proportion to the situation, was his way of explaining how he felt. If that was the only way he could explain it then it was necessary for him in that moment, and for me, no real harm done – sticks and stones and all that. I loved my dad before he said it and I loved him just as much afterwards. A simple example of still seeing the person, not their dementia.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

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