Presence

We are all interrelated and interdependent. No person exists merely as one person. I am the becoming of my mother and future. Our children are our expression. In Afrikaans the word “vergestalt” describes how language gives meaning, makes concrete our feelings and emotions. We express ourselves through language. But what if I start to find language difficult? Does that mean that my feelings disappear?
People living with cognitive impairment often find language difficult. This means that the way that they express themselves becomes difficult. If we cannot say how we feel it does not mean that we stop feeling. On the contrary, I think it often makes our feelings stronger. So inside of us things would start boiling and percolating, all these feelings and emotions and thoughts that we can no longer express are now all bottled up inside. Whilst many people communicate in non-verbal ways, and often do so very well, it is our understanding and interpreting of their non-verbal communication that lacks insight and understanding. We all come to each other with our own filters and preconceptions. It is very hard to be completely open to the message that someone is trying to express, especially when that message is expressed in a non-verbal way.
The result is that people living with dementia will often simply stop trying to communicate. NOT because they are living with dementia and lose their ability to communicate, but because we simply do not have the ability to be present enough, take the time and listen intently enough to “hear” them. The problem lies with us, not with them. Slowly their frustrations will get the upper hand and they will withdraw inward more and more. They will consciously cut off from the world because it becomes just too hard to navigate our inability to communicate with them.
The further dilemma is that the world also then gives up, thinking that the person with dementia no longer FEELS, because they no longer express their needs, desires or thoughts. There can be nothing further from the truth. And then, we stop treating people living with dementia like human beings. We let them sit in a chair for an entire day without any meaningful engagement. We talk over them. We administer tasks like bathing and dressing without as much as acknowledging them, let alone asking their permission. We crush their medication into their food when they refuse to swallow it. We dehumanize them to the point where they simply become living dead people. Bodies. Numbers.
It is very hard to bring about any change in the way that people living with dementia are treated in many residential care homes. I see a new interest in this globally, with the USA focussing on a new “Care for Our Seniors” act being proposed as a step towards transformation. Sadly, the focus (in my opinion) is again off mark. Unless we start with the rights of the people for whom we propose to care, no amount of quality indicators or workforce development or structural changes will make a difference. Yes, employees need to be paid more. However, an increase in pay will not improve care. The fanciest building in the world will not create a life worth living. The best standards, and the best oversight of such standards will not change the hearts and minds of the people who care for the vulnerable.
It is only when we get to the point where we truly understand the ecobiopscychosocialspiritual complexity of our being-in-the-world that we start seeing change. From the inside out, not the other way around. Andries Baart’s www.andriesbaart.nl/presentie/ <www.andriesbaart.nl/presentie/> brings us to the essence of care. We need to shift our focus away from the concrete towards a more holistic approach, one that is truly ethical ethicsofcare.org/becoming-a-care-ethical-institution/ <ethicsofcare.org/becoming-a-care-ethical-institution/> These are very hard questions that we need to ask ourselves. They require that we become very still, that we look deep inside, that we build the bridge of empathy towards a greater understanding of the vulnerability and precarity of life in general. Only then will we truly see the person behind the disease and begin to connect on a more spiritual level, honouring the Soul of the person living with dementia and those who work with them.
Somehow I think my suggestions will fall mostly on deaf ears. We want to write policies, create standards, police people. I will not give up.
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>

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