Dementia porn

I read an interesting comment about the world’s frenzy around dementia and the discourse surrounding the syndrome. There are more and more horror stories with extreme notions of what is considered “symptoms that people are suffering from”. The comment referred to this as “dementia porn” – an obsessive rhetoric around the horrors of what happens to people with neurocognitive impairment, the more gruesome the better.

What is this about? Why is every Facebook page or Support group inundated with “the slow death”, or “we have lost our mother twice”, “the horror of a disease that robs you of your life before you are dead”? People seem to get off on seeing who can be more graphic in their description – almost like stopping at a car crash to see blood and guts. What would be the motivation behind this?

I do believe that we humans are mostly wired for the negative. Very few people are naturally mindful of the beauty of each day and the miracle of life. We somehow love scratching in the dirt, we slow down to see dead bodies, we love gossip and horror stories…and when it comes to people living with dementia, we excel at telling each other of how horrible it is. “Just wait, you will still see when its gets worse…” We portray monsters, not people, sharing stories of “faeces smeared across a wall”.

I have often said this – in all my years of working with people living with dementia I have never seen anyone ‘suffer’ from the disease. Yes I have seen people feeling anxious, lost, sad, even very sad. But don’t we all feel this from time to time? Why is it that when a person living with forgetgfulness feels sad, they are ‘suffering’? Why do we insist on labelling perfectly normal emotions as the dreaded “symptoms of dementia”? More often than not the distress that is being expressed is as a result of what is happening in their environment, and not in their heads!

Thanks to our obsession with biomedical dementia porn we love labelling and categorising and boxing people in. We create “the four phases of dementia” – as if all people living with dementia are a homogenous group of soulless individuals, easily booked into our categories of disease.

People living with dementia are our teachers. THEY pull US out of our comfort zones, they challenge us to stop and listen, to stop doing and rushing and to start being. They teach us to see the world from a different perspective. They teach us patience, forgiveness, humility. The more we see them as the true experts of their own lives, the more they will flourish, and the less we will feel the need for these demeaning stories.

We need to change the lens through which we look and the narrative of our discourse. I would love to go back to seeing dementia as just a part of our journey of life. Where we can transcend into a different reality, where we can see different things and communicate on different terms. A place where we can actually feel comfortable. That is the world we need to create – one that is inclusive, supportive, kind, loving, full of homour. A world where we can open our hearts and our minds to see each other, not as carbon copies of one another, but as unique beings interacing in a wonderful universe full of suprises.

If we can do this, people will indeed stop “suffering”.

Nine red busses in the Karoo

On Tuesday I did a talk on “Dementia – what happens to the person behind the disease”. After the talk a 97 year old lady came to chat to me. She was beautifully dressed and looked like a cheerful person.

She told me how much she enjoyed my talk, and wanted to know my thoughts on hallucinations. She had a twinkle in her eyes, and I immediately liked her. Of course my first questions was “well, what drugs are you taking?” She laughed and said that she was on no medication. I asked her if these hallucinations were worrying her, and she said not really. They were however worrying her daughter!

I find it interesting, as the nature of a hallucination is that most people will not recognise them as such – they will believe that what they see is real. For this lady it was different – she knew that what she was seeing was not real. Yet she saw what she saw – and it was very real. She knew that she was “hallucinating”.

I asked her to tell me what kind of things she saw. “Well” she said, “I was sitting on the stoep on my daughter’s farm, and I saw nine red London busses drive past in the distance”. I laughed and asked her if the farm was in the Tankwa Karoo anywhere near Africa Burn – it was not. I then asked her what she thought these things were that she was seeing. She told me that her Mother was psychic – and that she often thought that she had the same gift.

This really intrigued me – if only for the reason that we so easily label anything that we cannot explain as a medical condition. It is the easy way out – to psychiatrise behaviour. I told her that if she was part of certain African tribes, she would have been hailed as someone communicating with “the other side”, talking to her ancestors, being gifted with a “third eye” insight. Yet, in our dumbed down world of biomedical science she would be labelled as demented.

This lady is as sharp as a button, she has a keen sense of humor and an even sharper wit. She is living independently and is healthy. Yet, because her daughter does not understand her visions, she wants her to be labelled as demented. We laughed about it, but I could sense that she was worried.

She then asked me if I knew that they were poisoning the pigeons at the home. I do know that they were doing this – some Residents feed the pigeons, but the food attracts rats. She proceeded with an elaborate story on how the poison that is being used go into the trees, and that she can see the trees all in flames. She stopped abruptly, head askew and said “I am hallucinating again, aren’t I?” We both had a giggle, I gave her a hug and we had a cup of tea.

African Wisdom

It is time for us to start honouring African wisdom and knowledge. We are our stories. Our being-in-the-world is lived through our connections with family and loved ones.

These stories are not always healthy or positive. We were hurt, neglected, abandoned, abused. Yet as we grow older our brains give us the opportunity to look inward, to reflect, to ponder our life stories. It only comes after 55 to 60 years of age, a time to really take stock and reconsider our youthful reactions to our stories.

What we do with that knowledge will pretty much determine how we age. If we can forgive, let go, bless and see the wood for the trees, we will be given new opportunities for growth. If not, we will withdraw inwards more and more and start shutting down instead of embracing the abundance of the universe. And we will become living dead people.

Our internal dialogue and the discourse we engage in will pave the way to contentment, or not.

Life is not easy. Our parents and loved ones did the best with what they had. Very few of them signed up for the roles that they were given. Even fewer had the tools to engage with children who did not fit in with the mould. If we now find ourselves outside of the spectrum of the “norm”, we must acknowledge how difficult this was for our parents or teachers to comprehend and contend with.

Every day is a new opportunity to change our minds. To reconsider. To reflect and to start making new connections with those whom we have left behind.

For it is in our “old age” that we will need these loved ones. We will need to feel connected, in spite of a difficult or abusive childhood. I truly believe that it is never too late to have a happy childhood. Start again – begin to play, learn to play the piano, or the guitar. Swim in the ocean. Get a puppy. Start to draw or paint or do ceramics. Be happy.

You cannot replace the love you did not receive. But you can start loving yourself and giving the love to those around you. To be kind. To be generous. To laugh. And if you so do, your days will be filled with more than you have ever dreamed of. Believe me. And the isangoma.

Withdrawing…

Do you think it is possible that someone can withdraw from life to the extent that their brain start disengaging and shutting down?

Life is hard for many people, and getting more so for some as they get older. Yesterday I spent a bit of time in the clinic of the Hangberg community, we had a Memory Cafe in Hout Bay, and I did a talk at Nerina Gardens in Fish Hoek. (I also witnessed a terrible incident of bullying…) The more I hear people’s stories, the more I hear of sorrow, sadness, heartache, anxiety, loss. Not everyone is equipped emotionally to stand up to the world. For some the constant bashing just gets too much.

Some people go for therapy, meditation, drugs, alcohol, religion etc. Others start to disconnect – slowly but surely just shutting down in order to not feel the constant pain. Depression over a long period of time will eventually present with the same “symptoms” of dementia (this will deserve another post, as I do not really believe that we can talk about “symptoms” in this context). But they start to lose interest, they start to forget, they start to be less emotional, and eventually they will just stop responding.

Our lives (and brains) are like an electrical distribution board – full of trip switches that allow the current to flow. In order to function optimally, all the switches must be on. Yes of course we can sometimes switch off the geyser to save power, or take a holiday and switch off a few more trip switches of non-essential power circuits. However, in real life we need all of them on. When a circuit malfunctions, we can however make a conscious decision to switch that circuit off. If we choose to no longer feel the pain of a miscarriage, a failed marriage, the death of a loved one, we can switch those circuits off. Yet the more circuits we switch off, the less present we will become.

Many older baby boomers lived through very tough times. They were not brought up in an era of psychotherapy – it was all about the “stiff upper lip” and “getting on with it”. Backstreet abortions, painful miscarriages, abusive relationships and childhood sexual abuse were not ever spoken about.

As we grow older, our brains produce new neurological pathways that we have never had before. These pathways present us with an amazing ability to stop chasing the future. We grow quieter, we start to reflect, we contemplate our life history and we start to become wiser. We look back on our lives more than what we dream about the future. It is in this looking back that our old pain and unresolved hurt often knocks at the door again. Past issues that we thought we had long forgotten will creep into our minds in the middle of the night when we cannot sleep. Often these thoughts are now worse than what they were many years ago, and we have no way of dealing with them. Except to consciously shut them out. We start to close certain of the filing cabinets, locking rooms that are too painful to go into.

When I was young there was often talk of a certain person in our village who was left at the altar by a promising prospective husband. The talk in the village was that “it drove her crazy”. Nowadays we have pathologised and pscychiatrised hurt and loss and pain. It is now classified as a disease, instead of acknowleding that someone just simply could not deal with their reality. That they started switching off certain circuit breakers, that they simply did not want to engage with the reality any longer.

Over the years I have seen many, many older people who have been “diagnosed with dementia”. And when I looked into their eyes, I knew that they were not demented, but that their cross became too heavy to bear. They switched off the circuit breakers that they could not longer deal with. It was the only way that they could survive their being here, until the time came when the main switch would be switched off. In a world that they have locked out certain unbearable feelings, they have become locked in. It is not our job to entice them out into our world. The best we can do is to BE with them. Confirm them, validate them. And leave them be in loving kindness. Not wanting to remember does not mean that they do not think and feel and know. They simply do not want to be here anymore.

Vulnerability in Hangberg

I have just had the privelege of visiting the Hangberg Clinic. There are more than a hundred people waiting patiently (pun intended) – old, oldest, young, youngest. The mood is depressed. The staff very friendly. The wind howling sand through the waiting room. I will refrain from a lecture (or even worse, a sermon) of how grateful we should be….

I will rather reflect on vulnerability. As I walked onto the premises, I could sense so many emotions. First of all, my own recollections of my childhood. No, I never had to wait at the clinic, I played there because my Mother was one of the District Nurses. I helped putting ointments in little plastic bottles with a wooden spatula. And count pink pills into little bundles of ten. Decant cough mixtures from a large brown glass bottle into little plastic bottles. I had no idea of the reality of the people who came to the clinic. I heard babies cry when they were immunised, saw faces in tears. But mostly, I had fun at the clinic.

The harsh reality of what I saw this morning was so different. I could not help wonder how long it has taken some of the people to get to the clinic, how long they will have to wait, what news would await them. Vanessa, a Caregiver angel who took us there, was telling me that many Elders would come to the clinic as a social event, simply to combat loneliness. If they do not get a turn today, they will come back tomorrow. The place is after all buzzing with kids running around and animated conversation, mostly. I could however not help seeing some looks of despair, maybe fear? And some faces filled with defeat. Maybe just another step towards the inevitable.

Of course my brain immediately went to opportunities – why do they not have a big screen television where they could show educational programs on non-communicable diseases or HIV or dementia. They have a captive audience… Typical response of a white man, sadly. Let’s educate them while they suffer? The habitual “us” and “them” scenario.

What would I have wanted whilst sitting there for the next however many hours? Educational videos? America’s funniest home videos?

What would sooth the vulnerablity of my dis-ease in this harsh environment? What would give me a sense of hope, a look into a future that is not perhaps dark, uncertain? I have no idea. I could never imagine what it must feel like to be in that position. The powerlessness of being at the mercy of a system that is not very user friendly. Hoping to see someone who could shed light on your troubled mind, that ache or pain that does not go away, that dark night of your soul perhaps.

The Sister is beautiful and friendly, engaging. I stand in awe of her gentle smile and soft touch when I shake her hand. I cannot imagine what she must witness on a daily basis. I cannot begin to think what news she has to impart and decisions that she must make. And yet, she is soft en gentle and kind. These are the angels walking amogst us – the people who truly make this world a better place.

The mind

Without becoming overly philosophical, I am intrigued by the ‘mind’ and what happens to the subjective experience of Self as we age and our cognitive abilities change. We hear people say “he has lost his mind”. Can one “lose one’s mind”? What/where is the seat of the mind – is it a purely cognitive function of the brain, or is it an intricate symphony of many instruments that fuse into a harmony of knowing? Is the mind factual or emotional, or a combination of facts and feelings that we ascribe certain meanings to?

We know that feeling in the gut when we get shocking news – and feel ‘gutted’. Well, we have exactly the same feeling when we get exceptionally good news or when we get a fright – it is all in the gut! But, we somehow process the ‘gut feeling’ based on perceptions of good or bad or happy or sad.

Is the link between the emotional experience and the interpretation of this experience short circuited for the person living with cognitive impairment? Do they just express emotions not really knowing what they feel?

The subjective sense of Self, the mindfulness and the emotional awareness of people living with dementia is (in my opinion) elevated to a much higher level. Their intuitive sense of their own vulnerability is like standing naked on the highway – vehicles rushing past at incomprehensible speed, people staring, hooters blaring. Very few stop and offer assistance. It must be unbelievably frightening.

Often their only defense is to withdraw, to go inward more and more, to consciously cut off. And as Naomi Feil once said – “become living dead people”. Not because of dementia, but because the world simply is no longer their place of belonging. It is the world that robs them of their identity, security, connectedness, autonomy, meaning, joy. (The Eden Alternative Domains of Wellbeing).

When a person living with dementia is seen as someone who can no longer grow, a slow death sentence is imposed – again, not by the disease, but by society.

Growth is spiritual, it is our own ‘becoming’. It does not have to entail learning new words or concepts. Growth can be a meaningful journey of becoming your true Self, divinely connected. Of truly becoming the new, different you, being with your own Self, learning to dance with the dis-ease rather than to fight it. Learning to honour the new reality. Exploring a mindfulness of spiritual awakening.

I so hope that we will start learning from some African cultures who revere older people who’s minds have changed. That we see this as a progression to a higher state of being – “with one foot on the other side”. Imagine a world where we seek to understand this state of being in order to learn from it….

I will never forget, as long as I live, looking into the eyes of my maternal Grandfather when he stopped communicating verbally. I looked straight into his soul, seeing the most mindful human being that ever crossed my path. I saw his respect for nature, his love for his family, his life of devotion to his God, and his unconditional love for me.

Dementia and Consciousness

There is one line in the definition of dementia by the World Health Organization that most people seem to not acknowledge: “Consciousness is never affected”. Not ‘sometimes’ or ‘mostly’ – NEVER. The person living with dementia is consciousness of their condition. Even though they cannot communicate verbally, it does not mean that they are not conscious. They feel, but more than that, they KNOW. They know who you are, always, even though they might forget your name or are unable to show recognition. They are aware of how they are treated, even though they cannot ask you to stop treating them like that. Their “shutting off” is not necessarily a result of their dementia, but often because they can tolerate -or react to – the way that they are treated by the world. Afford people living with dementia your PRESENCE, being fully there, acknowledge the sacredness of their human spirit. Dementia does not necessarily affect the entire brain all at once – there is capacity for growth and new neurological pathways to form throughout the ageing process. The person is never lost to the disease – “we need to change our minds about people whose minds have changed” (my favourite line from Dr. Al Power).

The unique experience of living with dementia

If you have met one person living with dementia, you have only met one person living with dementia. No two people’s experience of neuro-cognitive impairment is the same. We are all individuals with unique social backgrounds, personalities, belief systems and physiologies that impact on our being-in-the-world. As ecobiopsychosociospiritual beings, we are so much more than just a “syndrome” or a “disease”. The more we change the disease discourse, the more people living with different abilities will have agency. The more we focus on the domains of wellbeing the more people will be empowered to live full lives – identity, connectedness, autonomy, joy, security, growth and meaning are the attributes that define a life worth living. (The Eden Alternative South Africa). We need new definitions and a new vocabulary in order to engage in a new discourse. Let’s start today!

Diagnosing Dementia

The process of diagnosing dementia is complicated. We all have beta-amaloyid plaques and tangles in our brains that increase with age. This is NOT necessarily a sign that someone will neuro-cognitive disorder (dementia). Behavioural or mood changes plus these brain signs do not necessarily equate to dementia. There are many conditions that present with so-called symptoms often wrongly attributed to dementia: chronic depression, delirium, dehydration, malnutrition, iatrogenic disorders etc. Dementia is a diagnosis by exclusion of these and other conditions that might mimic what is often confused with dementia (pun intended). Subjective cognitive impairment – where we constantly tell ourselves that our brains are deteriorated or that we have “mini Alzheimer’s” or senior moments are a dangerous form of self conditioning – 93% of people doing this will end up with dementia. The mind is powerful and must be managed…

Keeping your brain healthy

Being diagnosed with dementia does not mean that your brain has stopped working. It is usually a very minute part of the brain that is affected, in fact so minute that only the most sophisticated PET scan technology can detect it. The rest of the brain is intact, and functioning. Thanks to neuroplasticity, new neurological pathways can be stimulated and grow, in spite of the fact that certain minute parts of the brain are affected by beta-amaloyd plaques and tangles. If we have enough brain reserves and we keep on forming new neurological pathways, these could actually “override” the atrophied parts of the brain. It was found in autopsies that some people living absolutely functional lives, with no signs of dementia in their day to day living, had all the physiological signs of dementia in their brains. Again – atrophy of the brain does not necessarily mean that someone will become demented. Brain reserves can be built throughout our lifetimes – the human brain functions optimally up to about the age of 96 years of age! After 96 you might expect to find learning new things a bit more tricky! If we do not change the rhetoric around social constructs of ageing, being old, being retired, being unable to do things and we stop living a full life, we will see ourselves becoming that – old and decrepit. It does not have to be so. Changing your mind will affect the way that you age. Keeping your brain fit and healthy will affect your mindful living.