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Consciousness Is Never Affected

Someone recently made the comment that it must be harder for the family of a person living with dementia to witness the progression than it is for the person living with dementia, as they will not know what is happening.

As I pointed out before – consciousness is never affected by dementia, even when it has progressed to a stage where it is impossible to communicate verbally at all. The person knows what is happening. Research shows that most people living with dementia live with this knowing that something is “wrong” with them for about five years before they would seek help or admit to those around them that something has changed.

They develop very creative strategies to rationalise what is happening – making notes for themselves, joking about their forgetting, blaming their loved ones for not telling them things, pretending to be hard of hearing etc. This period leading up to “coming out” is extremely hard, causes a lot of anxiety and can lead to major fall-outs in families. The stress levels of the person having to invent coping strategies, dodging bullets all the time and saving face can often build up to an explosion of emotions and even a physical attack on a loved one. Or just a complete breakdown. Or a slow regression into a very lonely and vulnerable state of being.

Somehow this is even worse for men. Living in a world where men still find it difficult to show emotions and acknowledge vulnerability, they will simply withdraw inward more and more, becoming more and more depressed. The depression will exacerbate the forgetfulness and feelings of not being in control and set off a vicious circle of feeling desperately lonely and helpless.

Finding help is possibly the most challenging part of coming out. We simply do not have enough resources or expertise to guide people through getting a diagnosis. So many people get wrongly diagnosed, are given medication and become even more lost in the tangled web. The journey of brain scans and cognitive tests is often like a slow march into hell.

For many people getting an actual diagnosis is a huge relief. It validates their feelings and gives the monster a name. It is always better when we get to know one another on first-name terms. However, very soon after this meeting hopelessness and despair will set in. Every thought and feeling is now tainted by the tarred brush of being demented. In South African law, you now no longer have a legal agency. If you have given anyone power of attorney, once diagnosed with dementia it is no longer valid. You are in fact now no longer considered to be you.

There is much talk about “person-centred care” and “person-directed support” – fancy narratives around how WE should treat THEM. Should we be allowed to tie them to a chair – oh no. Can we crush their medication and hide in a spoon of jam – “they” all love sweet things! Pretend that we are going on a picnic to drop them off at a care home. Give them an old set of keys to try and start their car when we don’t want them to drive anymore. Lie to them about their son’s death – telling them he has gone overseas.

Again – this is not the disease robbing the person with dementia of their dignity. It is a world that is so ill-prepared for those living with different abilities. We create dis-ease. We rob people of their autonomy and agency. We leave them powerless trying to figure out the web of lies that the world weaves.

Don’t get me wrong – it is not because we are bad and evil people. It is because we simply do not know better. Walking a thousand miles in another person’s moccasins is a wonderful thought. It is not possible. We cannot know the fear and insecurity and desperation of a person whose world is crumbling bit by bit. Most of us find it difficult to communicate with our loved ones when they are perfectly healthy – let alone when they are not. Our own fears of the unknown often overwhelm us, and before we know it we have told a lie or said the wrong thing.

There is no recipe. Every situation is unique. If you have met one person living with dementia, you have met one person living with dementia. Let this journey also be your discovery of your true and authentic Self. Let kindness and honesty be your guide. See the sacredness of the human spirit. And be kind to yourself. You have not signed up for this.

Looking back over the years, I now know that people living with dementia were my most inspiring teachers – finding a way to reach into the vulnerability, and touching that person hiding behind layers of fear, taught me what genuine human caring is all about. May this be your gift as well.

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