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When Speech Is Gone

What happens when speech is lost? How do we express ourselves? Or rather, how do we give expression to our Selves? We give embodiment to our Being through our speech, or our writing, literally narrating who we are and how we want our Selves to be positioned in the world. And then it dries up…does that mean that when we are no longer expressed, we seize to re-create our being-in-the-world? What happens?

I think that we have many ways of expressing our Selves, and while speech is the accepted way of expression, our communication abilities are more complex than just speech. In fact, whilst it can be extremely dif cult for us when we cannot verbally express our Selves, it can also rede ne our communication with the world.

Perhaps people who are truly attuned to us will now pay closer attention. Perhaps they will look at us more intimately, perhaps even truly see us for the first time…

The ability to communicate does not go when we can no longer speak. It does however become more complex and intimate, and often I see people giving up trying to communicate – not because they cannot do it, but because they are not paying enough attention to be “heard”/seen. Instead, we develop ‘tricks’ and ‘gimmicks’ to control people living with dementia, to get them to ‘agree’ with what WE think they want or need.

A simple example of this is when it comes to giving medication. What is the right thing to do if a person living with dementia refuses to take their medication? Or refuse to take a bath, be shaved, or have a haircut? Or refuse to eat? Do we honour their agency/autonomy, do we enter into a process of negotiation? Sadly, in most cases we take over complete control and force our will on the individual, robbing them of any power that they might need to assert. Through this, we imply that the person living with dementia has no sense of Self, that they are not at all conscious, nor that they are actually trying to communicate something to us. Is this not in fact denying them or robbing them of their citizenship? At what point does the person living with dementia actually give up their right to citizenship, autonomy and free will? Do we consider that there is a right to free will?

If we can finely and intimately attune ourselves to the person living with dementia, we will learn a new code of communication. Through their eyes, hand movements, body language, facial expressions, and the way they tilt their head they are communicating with us. There is often no need for the language of verbal expressions – that is OUR way of communicating. It is when we open ourselves to THEIR way of communicating that we start to explore, to discover the most wonderful moments of articulation, different pathways of knowledge and information being transferred, and a true connection. Coming to think of it, language in certain cases where people are living with dementia can often be a barrier to connecting. We sadly are SO caught up in our need to explain ourselves, that we have just about lost the ability to BE, to absorb every nuance of the person who can no longer speak. Someone mentioned recently that we are indeed human BEINGS and not human DOINGS, yet we incessantly try and DO rather than just BE.

Again, this is not easy. It takes time, it takes a lot of patience, centring yourself, taking deep breaths and the ability to let go of thoughts that might distract you from the moment of being. It sounds simple – yet it is not easy. It comes with practice, and with a true curiosity to connect, to honour the person living with dementia and meet them where THEY are, not trying to constantly drag them into our world.

A few years ago one of our Residents suddenly refused to eat or take any of her medication. This was very dif cult for the Nursing staff to accept. Plans were made to crush medication and put it in a spoonful of jam. The talk was of a nasogastric tube feed. I asked the Care Partners what they were thinking was happening. It was clear to them, this person wanted to die. I asked their opinion on what we should do. It was decided that we would leave her favourite food next to her bed, and offer her things to eat every time we came into the room. This was discussed with her family who agreed on our course of action. We also offered her her medication at regular times, and after trying for a while we left it with her food, reminding her of it at regular intervals. She made no attempt to eat or take her medication. A few days later she passed away very quietly and peacefully, surrounded by the Care Partners. I feel that we honoured her autonomy and personhood.

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