To be, or not to be…

There is a general rhetoric about people living with dementia that is really disturbing. I read on a so-called “Support Group” about whether one should tell a person living with dementia that someone close to them had died. Just about everyone on this group says NO – “it will only upset them”. That really upsets me…
Why do we feel that the person living with dementia does not have the right to know that a husband/wife/child had died? Why should they not be allowed to be upset, mourn the loss? Is it not patronising on our behalf to withhold the reality of life from them, to lie to them?
This is tricky. I have written about what to do when an 80 year old says “I must go and find my Mother”. I do believe that this is more an expression of a need, perhaps missing the way their Mother made them feel… 
If there is a death in the family of the person living with dementia, I think we owe it to them to include them in all the rituals, to be honest with them. And if they get upset, rightly so. Then we comfort them. I also believe that the more we include them in the rituals, all of them, the more the reality will stick with them and they will know, even if they forget. There is in my opinion a difference between knowing something and remembering – sometimes the questioning has very little to do with trying to obtain the facts. It is often a result of feeling insecure or lonely. 
To be part of a family unit that is inclusive, warm, holding, gentle, nurturing, secure and loving, will help the person living with forgetfulness to maintain a sense of Self. I have often been surprised by how acutely sensitive people can become to our body language, tone of voice, strange sounds or smells. This often leads to suspicion and insecurity, and lots of questions.
Positioning ourselves as Caregivers require a huge amount of courage, often because we have to let go of our own need to be right, to change things or to fix. We need to be able to let go of our own ego, to selflessly be there for the person who needs our support. Finding the balance between taking care of ourselves and supporting a person living with forgetfulness is not an easy task. Only if we can honour the person, see beyond the disease, grace them with respect as a whole person, will we have a more meaningful relationship. 
Often, when a person living with dementia can no longer communicate verbally, we also stop talking. I believe that the fact that a person can no longer communicate outwardly with words, does not mean that they do not have the ability to communicate inwardly. In other words, that they can take in our intent, our kind presence, our touch, our laughter or sorrow, our presence. Tell them a story, share your feelings, go for a walk, play music, or just BE with them. The sensory ritual of peeling an orange and sharing it with them, making a pot of tea and drinking it with them, sitting quietly in a garden watching the birds. 
Somehow, I think the challenge is that so many of us find this difficult to do with those we love who do NOT have dementia. Just being – something so simple, yet so difficult…

Caregiving and Goodness.

I had the honour of attending the graduation ceremony at North West University this week where Prof. Monica Ferreira received an honorary doctorate. Prof. Monica is a legend and pioneer in research on ageing. Now retired, Monica found the Institute of Longevity Center at UCT.

Much of the focus of her work was on the role that Elders play in families and communities, and to change the focus away from Elders being a burden on society, to a focus on the important role and contribution that they make. In the company of some of the greatest Gerontologists across the world, it was fascinating to listen to the conversations that now do the rounds in academic circles. It made me return to my fascination with the mystery of ageing.

Harari, author of “Homo Deus” and “Homo Sapiens”, and now of “21 Lessons for the 21st Century” writes extensively about the fourth industrial revolution, and how artificial intelligence will change the world, especially of robots taking over the work that people do. He makes one exception, and that is the work of Caregiving. It is the one job that he cannot foresee being taken over by AI robots. Interesting…

In academic circles, there is now at last a very strong move away from the margenalizing of older people. First of all, there is no consencus on what the term “old” really means. We no longer look at “old” as a chronologically determined factor. We also do not equate ‘old’ with ‘frail’, ‘in need of care’ of even necessarily ‘vulnerable’. This shift away from the linear (Western) trajectory of ageing towards a more circular (African/Majority World), holistic look at our life course proposes that we dip in and out throughout our lives, sometimes contributing, sometimes not. We might enter the labourforce for long periods of time, but we might also step aside from it and contribute on many other levels. Being teachers, caregivers for children or grandchildren, creating art, writing or simply being companions. Definitive in the process is that we never ‘retire’ in a way that we start withdrawing from society and no longer contribute.

The minute people who have done a lot of living start retreating or retiring, one can see a distinct decline in their wellbeing. Taking on the stigmatization of being a burden, not having a purpose and no reason to get up in the morning is often a slow death sentence. We spoke at length about Elders in poor communities’ pensions being used by their entire extended family. Is this abuse? I am not so sure – for many Elders it is their honour to share what they have with children and family in true Ubuntu style. While we cry abuse, Elders often feel that they can provide and give something towards the education of their grandchildren perhaps.

All very well, I hear a lot of people mumble. What about people who are really old and frail and need “frail care”? What contribution do they make? I have said this before – in my opinion they are indeed the most precious contributors in a society that on so many levels have lost their humanity. Their contribution is to teach us about “caregiving and goodness”.

In his remarkable speech at UCT, Prof Arthur Kleinman (medical anthropologist) talks about his own journey in having to care for his wife, and how “the medical fraternity has trained caregiving and goodness OUT of people”.

Often when I listen to the conversations of people who have to care for a (one would think) loved one, I am astounded at the stories of horror. I know that it is not easy, I have seen and heard and felt the pain of being a Caregiver. However, the minute we start exploring the gift of truly being present with the person who needs our support, there is a shift in understanding. The vulnerable person living with forgetfulness or different abilities becomes our true teacher, holding up the mirror to our humanness, which is absolutely NOT a superpower. Being human is feeling the agony, shedding tears of anger and frustration, being tested and tried to the end of what we think our tether is. So often Caregivers think that they are not allowed to feel hurt and angry and frustrated by the care journey. If you think that you are not allowed to feel this, you are indeed a robot guided by artificial intelligence. Heaven forbid that we should ever have Caregiving robots that do not feel.

It is in this embracing of the role of Caregiver that we often discover our true selves, that we grow, that we indeed become more human. That is the role and gift of the vulnerable in our society.

Melancholy

I have been thinking and writing a lot about “connectedness”. When training our Care Staff, I always refer to two kinds of connectedness that are essential for humans, being our grounding connectedness with the Earth and our Spiritual connectedness with the Infinite. Somehow, I realise now, I never really talk about our connectedness to other human beings. I know that socialising is very important, especially to prevent isolation, but somehow I have my doubts about the obsession with loneliness…

When speaking to Care Staff from African cultural backgrounds, there is always much debate about the exact translation of the word loneliness, and mostly there is no consensus on what the exact word is for this seemingly strange sense of being. This has made me aware of the possibility that loneliness is, yes bear with me, maybe yet another Western construct. Could it be that our obsession with individuation and privacy and the rights of the individual above that of society has created this monster called “loneliness”? That the condition is man-made and not an innate part of who we as humans are? It would seem that the phenomena has become so common that it is now seen as part of the human condition – yet another part that needs to be cured, another dis-ease construct that needs medical intervention.

A friend sent me a beautiful videoclip of the Japanese concept of “wabi-sabi”, now well known thanks to the internet and the beautiful postings of broken ceramics being fixed with gold inlay, celebrating the beautfy of imperfection. This made me think how much time and effort we spend on trying to hide – not celebrate – our own perceived imperfections. We colour our hair, straighten our teeth, straighten/curl our hair, shave our body hair, botox our wrinkles, nip and tuck our wrinkles, lie about our age. This perfection obsession takes up so much time, energy and money, driving us more and more into hiding our true Selves. We fight ageing with our obsession with eternal youth, as if we can defy Life, make ourselves immortal… This I think is where loneliness is seated – in our obsession with eternal youth. Rhino horns and shark fins and elixirs that promise to cure an existential ambiguity around ageing and passing through this life.

Growing older. Can we perhaps focus our attention on just the GROWING bit? We admire the age of a tree, the gnarled beauty of bark, the rings that mark time, mark the weathering of storms. We admire the Notre Dame – and cry when it burns down, cry for the loss of something so old and precious. We pay fortunes for old painting, cars, jewels. We marvel in ancient cities and take endless photographs of rotten plaster and bricks. We walk ancient pathways to find our true Selves. Yet, we hate our own growth into Elderliness. What is this dichotomy based on? Fear perhaps?

Wabi-sabi is about embracing our impernance, our imperfect being, the rustic nature of age and the melancholy that becomes part of the growth towards our departure. Melancholy, “saudade” – a beautiful state of being that we avoid at all costs, that we medicate out of existence to create a zombi-like floating through a meaningless life of disconnect.

Wabi-sabi urges us to appreciate the passing nature of our being, to embrace our own fragility, coming to terms with being broken, modestly being in our own fragility. In our desperate efforts to escape this, we end of diconnecting from the Earth and the Infinite, the very source of our growth. We end up like living dead people, hollow to the core. When Life starts pushing us gently (or not so gently) towards growing old, we push back with all our might, and the might of the medical and pharmaceutical world. When we start forgetting, we do everything in our power to remember, that which for many years perhaps we wanted to forget. When the marks of age start showing we cover them with the plaster of denial.

The reader on this youtube clip talks about Buddhism, not as a religion, but as a way of being-in-the-world, urging us “to make peace with our transitory, imperfect and unheroic nature”. And therein lies wisdom, grateful acceptance, celebration, solitude, connection. Melancholy.

So next time you see an Elder just sitting quietly, don’t just assume loneliness. Rather move closer and explore their wisdom, learn from them what it means to Be. Create a connection that might just infuse you with the magical elixir of age.

The red dress.

Maybe I should clarify a few points – I am not against medication when it helps people to be more independent or when it relieves pain. I am not against a diagnosis when there is a need for a medical intervention. Or against therapeutic interventions.

I do take a strong stand against reducing a person living with forgetfulness to a medical phenomena. When everything about that person is reduced to “the symptoms of dementia”, as if the person has disappeared within the syndrome. I also take a strong stand against the scientific approach – that everything can be explained in scientific research, that we are “merely” the sum total of a few organs, nervous systems and a brain.

Our humanness is as magnificent and as complex as the universe itself. The more scientists kick and scream against the mystic the more we will find people being treated like slabs of meat. (And no, I am not against scientific research or the immense knowledge gained through scientific research).

This is not about a belief system, spirituality or a new religious order – it has nothing to do with a god who sits somewhere up above dishing out divine favours, or not. For me it is all about our connectedness – becoming more and more of our being part of a greater cosmos, a greater knowing. The more we become aware of this connectedness, the more we will respect each other, nature, our natural resources. It asks of us to stand still, to look up at the sky, to see the ants at their business, the season changing and the halo around the moon. It is not about doing something or going somewhere to find that something. It is about being present.

This is the point of departure – affording each other our presence. I am a big rib-crushing hugger. It is amazing how some people can melt into a hug, and others scramble like a trapped rat to get away from it. We are not all the same, not everyone likes being hugged, blablabla. I know. I am just aware of how people consciously can detach from intimacy, from being held, from holding. This detachment can become a way of being, and can eventually affect our connectedness to each other, the environment, and eventually to our own Self.

If there is any advice I can give, it is to learn to connect. Listen to your Self, be still. Walk barefoot. Lie on your back on the ground looking at the clouds or the stars. Work the earth. Feel the sun or the wind or the rain on your face. Stop trying to figure everything out and be present.

Herein lies the mystical being-in-the-world. You will find serendipity and synchronicity, you will feel in tune with the ebb and flow of Life’s rhythm. And you will be content.

A friend tells me the most beautiful little story about her Mom who has been living with forgetfulness for many years. On one of her visits her Mom was dressed in all red – everything! She asked her why she was wearing everything in red, and was told after a long pause: “so that I can see myself better”. Be significant. Dress in red – see your Self, especially if you are living with forgetfulness – never allow the world to loose sight of your Self. Stay conscious.

Sawubona

Sawubona – the Zulu greeting that literally means “I see you, and by seeing you I bring you into being”. It reminds me of the question of a tree falling in the forest…if no one sees the tree falling, did it actually fall? Perhaps one of the most devastating states of being is not to be seen. It is through being seen by others that we are vaildated. Or is it?

Kitwood’s definition of personhood being a status that is bestowed upon one by others worries me. Does it mean that I am only because others validate me? Ubuntu says “I am because of you”. Tutu said “It is not ‘I think, therefore I am’, but rather ‘I belong, therefore I am’”.

How much of our sense of Self is determined by an inner knowing of who we are? How is that inner knowledge created? Who writes the script of our inner discourse? Our parents, teachers, lovers? “You look good, you are fat, you are clever, don’t be so stupid..” These labels can become our status, our identity, and the way that we navigate our journey through life. At what point do we actually start questioning these labels and consider their validaty? The dichotomy of being is to be trapped between what we have been told about who we are in the eyes of others, and finding our authentic voice. This seems to be a lifelong battle for most people.

To be seen is to be brought into Being. To be truly seen, as opposed to being judged, is what validates our authentic Self and helps us come unto our Selves.

When a person is diagnosed, be it with dementia, cancer, ADHD, being bipolar, a new label is added. The narrative of Self and being-in-the-world changes, a new subtext is added and the discourse becomes tainted. Whilst this can be very helpful for the person who has been confused and worried about their dis-ease and not knowing was going on, it can also change the lens with which the world sees and judges us. The “medical gaze”, the question “what do you see, nurses? What do you see when you look at me? A decrepid old woman? …look closer, see Me?” Growing up with shame around so many personal issues, many of us spend our lives hiding who we really are, ashamed to make ourselves vulnerable to stand in our own truth. We are constantly battling and grappling with NOT being who we are, trying to be what we think people would want us to be. How to be so that we would be liked and loved, to be popular of successful.

For many people, with old age comes a kind of battle fatigue. We simply cannot keep up appearances any longer. With forgetfulness and memory loss also come a kind of detachment from what social norms have dictated. Filters start to disappear. Often we would hear that “he has had a complete personality change since his diagnosis”. Perhaps. Or perhaps he has just given up to try and be the person that you have always wanted him to be. “He has become so aggressive..”. Maybe, for once, he is just showing you exactly how he feels. Maybe he has been trying all his life to tell you eactly that – but never felt seen.

Many people living with dementia loose their fighting spirit. They become softer and gentler. Others become more fiesty. When there is no longer the need to impress or to fit in, perhaps we start seeing the true Self?

Sawubona – I SEE YOU, and by seeing you I bring you into Being. How do we see the true Self of another, without filters, without preconceived ideas, without judgement? Is it even possible? Naomi Feil, founder of the theory of Validation, says that our biggest challenge is to UN-learn. We have been so bombarded by a deluge of so-called “facts” about people living with dementia in particular, the different stages, behavioural patterns, why they do this and not that, etc etc. To see a person as a Person has almost become impossible.

So – if can really center yourself, open your mind and your heart, be present, you might see the person (living with dementia) for the first time for who they really are. This might just be a pleasant surprise.

On being mortal

Last night I had the privilege of watching John Kani (75) and Anthony Sher (69) perform “Kunene and the King” at the Fugard Theatre in Cape Town. An extraordinary tour de force that hits one repeatedly in the guts – cancer, ageing, racism, vulnerability, friendship, resentment, anger and loss. Yes these are themes that might sound passé – when performed by two such world class actors one is reminded of just how cruel they can be.

As my friend said after the play – “you can run but you cannot hide”. I found the Apartheid reminders particularly raw…but also (of course) the portrayal of such excruciating vulnerability, loneliness and pain.

Two Fathers whose children have abandoned them – their inability to come to terms with the rejection, holding on to an illusion that they will come back (“they are so busy”). Clichés – because they are so real!

Watching a play like this I wondered how many people in the audience realise the depth of this reality, how many can identify with what they see on stage. There were many younger people in the audience – a couple sitting in front of me giggled when Anthony Sher did not make it to the toilet on time and soiled his underpants. Yes kids, that happens in real life. Hang around long enough and it might happen to you one day…or your beautiful girlfriend sitting next to you…

We have sterilised and marginalised ageing and death, just as we have sterilised birth. Our inability to engage with our own mortality is more tragic than death itself. We fight – kicking and screaming – against our own bodies and the way in which it takes us on this journey called Life. We demand cures, just about destroy our bodies with chemo therapies against cancer, take the most poisonous drugs to prevent illnesses that cause more collateral damage than what it does good.

Somehow, we just cannot come to terms with the fact that we are not immortal. We do not want to talk about it. Cliché again, because it is so true, that none of us will get out of here alive. Instead of denying it and fighting, should we not start to embrace it? The challenging thing is that our brains/minds are not wired to contemplate our ageing – we simply do not have the capacity to envisage our own old age or God forbid, frailty. We all see ourselves as at least twenty years younger than we actually are, and stick to that. In a way it is good to not walk around day in and day out worrying about our getting old and frail. But hell, it would be so much easier if we were a bit more prepared…

At least have the courtesy of doing an Advanced Directive (different from a living will) to support the people who one day might have to support you if you cannot communicate your own wishes. If you suddenly have a debilitating stroke that leaves you speechless – will the people nearest you know how you would wish to be? What the things are that would sooth your soul? To what extent must they go to keep you alive? At all costs? Even if it means that you will not be able to taste any food, be incontinent, in excruciating pain not able to walk, dress yourself, eat by yourself, wipe your own backside? (Yes yes yes I know – that is why I have a business, and it is a wonderful gift). I am not advocating for assisted dying or euthanasia. I am simply saying wake up – we are not immortal. Nor will we stay forever young.

The sooner we can embrace our ageing and celebrate it in all its splendour and adversity, the smoother the journey will be and the more we will see the wood for the trees.

And like the red car effect – the sooner we start actually looking at older people through a different lens, seeing them as our future selves, engaging with them in a different discourse, admiring them – the sooner we will get a more realistic sense of our own being-in-the-world as people who are growing old, steadily towards the end which none of us can escape.

More on the Mystical Mind.

The Mystical Mind – it would seem a topic not very many people are willing (or interested in) to engage with. Perhaps it is seen to be too abstract? To me, that is exactly why it fits with this discourse on dementia, moving away from the biomedical, so-called scientific, reductionist debate.

For any person who has made it their duty to engage or truly connect with someone living with forgetfulness, or even someone who is very, very old, it will be clear that there is more to their being than just the sum total of their physiological (dys)function. Yet, we keep our focus on dysfunction of organs or limbs. In so many discussions around ageing we hear about heart failure, blood pressure, falls, hip replacements or incontinence issues. Yes these ‘wear-and-tear’ issues are real. No, they are not the definition of what it means to be old.

I am intrigued, and mostly disheartened, by the insistence of so many people that ageing is about decline. The deficit discourse bemoaning loss has framed and contextualised ageing as the worst possible thing that could happen to us.

Yesterday I had the honour of being invited to lunch with Professor Monica Ferreira, founder of the Institute of Longevity Center at the University of Cape Town. Now “retired” (I do hate the construct), Monica has become my Mentor for my PhD. We shared a scrumptious meal that Monica prepared, talked about her beautiful garden, art and the state of “care” in South Africa. Monica shared the most poignant story about breaking her favourite Corningware pie dish. (I will not share the whole story, as I know that Monica will write a short story about it one day soon!)

Not everyone is a Professor, I know. And not everyone has the privelege of a successful career with major academic achievements.

Earlier on the same morning I spoke to M, our builder. M is well into his 70’s as well, working hard to make a living and care for his frail wife. His is not an easy life. We chatted about his transition to becoming a Caregiver for his wife, how this role crept up on him and caught him off guard. He told me about his Maltese poodle whom he found dead in her basket one morning a few weeks ago. This was the tipping point that pushed him into a place of such grief that he sat weeping for three hours. His wife called his pastor brother in a desperate attempt to console M. It was clear that M did not want to be consoled.

My Grandmother used to joke about the fact that as she got older, she got shorter and shorter, and literally started sagging in her frame. (“Mens sak tussen jou bene in” she always said). As our bone density decrease, we do actually get shorter as we age. We are indeed ‘cut down to sixe’. However, this is also a powerful metaphor for me – we start resting on our frame, becoming more and more who we are, more and more real, in touch, in tune.

Our fight against the Mystical or adopting a simplistic dogmatic religious simplification of our lived experience denies us this gift of ageing. The more we kick against ageing the more we miss the Mystical Mind. The pragmatic attitude of defying ageing closes the door on this stepping over the threshold into our One-ness, our Own-ness, our coming unto our Self. Our ageing brain matures into reflection and contemplation by drawing on our journey with a pie dish or a beloved dog to shed new light on the dark corners of our souls. The Mystical Mind unfolds in directing us towards the inner sanctuary of our true Being. And when we start forgetting how to communicate with the outside world, I do believe that we have a stronger connection with this Mystical Mind. If only the world would honour us in that place, meet us there where we are on our journey, our forgetfulness will not matter. It will simply be the place where we are One.

The Mystic Mind…

“…the evolution of life now appears no longer as a process of the adaptation of species to their environment, but as the adaptation of minds to increasingly complex forms that exist in the cosmic potentiality. The cosmic connection means that the human mind is a mystical mind”. (Ponte & Schäfer, 2013, “Carl Gustav Jung, Quantum Physics and the Spiritual Mind: A mystical Vision of the Twenty-First Century”, Behavioral Sciences.)

One might well ask what forgetfulness, quantum physics and mysticism have to do with one another. Well, in my opinion, they are all parts of the same thing – our Mind. Our Western world has become a materialistic, concrete, scientific construct. Empirical evidence, data, categorisation, labeling – if you cannot count it, touch it, proof it, it does not exist. There is Western biomedical science, and then there is the rest of us. The “airy-fairy” ones…

In recent years quantum physics have shown that there is a non-material world beyond that which manifests in the material world that we see, touch, measure and try to manipulate. There are cosmic forms and forces that impact our being-in-the-world. These are like thought bubbles hovering above and beyond our consciousness, forming part of our whole being. Holistic being…we are formed and breathed through this Wave, like a massive ocean that contains us.

I am by no means an expert on quantum physics, and all that I actually comprehend is that there is a space of no matter that is the energy wave that creates matter. Some call this Godmind, others the Cosmic Energy. I would like to call this the Mystic Mind. Jung’s work with these universal or cosmic archetypes therefor proposes “spirituality” – “A view of the world that accepts the numinous at the foundation of the cosmic order.” (p. 603). There is indeed a part of what we experience that cannot be seen, non-material forms. These forms in the quantum world that, even though they cannot be seen, are real in the sense that they “appear in our mind and act in it” (p. 603). Just like the waves that exist beyond material forms of atoms and molecules, our thought waves exist and are connected, manifesting as our being-in-the-world. I am sure that for many people this idea seems like the “para-normal”. It is everything but – it is what should be considered the most normal thing on earth. Why not – quantum physics has proofed this?

To make things even more complicated – and simple at the same time – Ponte and Schäfer (2013) talk about “probability fields” – these waves are considered to be probability waves in that they consist of “dimensionless numbers, ratios of numbers” and in their interaction or interference, the material world manifests and molecules interact. So – whatever we see manifest in nature can be understood in terms of numbers. If we look at the Fibonacci numbers we see this manifest in nature over and over again. The way a seashell is formed, the way sunflowers seeds are arranged – the perfect “golden ratio”. So – there is this quantum world where according to Jung the archetypal forms are stored, much like we store data on the “cloud” these days, and we access this data to use in our everyday world. “The universe is conscious and our thinking is the thinking of the cosmic mind, which finds consciousness in us!” (p. 605). We are connected to this quantum wave of potentiality that is coherent in its wholeness – our consciousness is invested in this universal cosmic mind and manifests itself in our thinking and doing, or being-in-the-world.

Our inherent nature as we journey through life is to become whole, to reconnect, searching to become conscious of our Oneness. This journey leads us – with the help of our brain development as we age – closer to this spiritual realisation. It is in this state of mind that we connect with the Cosmic Consciousness, that which breathes us to Life. And herein lies my question about living with forgetfulness. In moving away from the material, concrete, solidness of this world that we have created, people are considered to be demented. We constantly try do draw them back into our concrete world. Could it be possible that this state of detachment is for some part of a further journey into wholeness? (This is indeed how it is seen in some Majority World cultures, like the Canadian Inuit people.) The Portuguese language uses the poignant word “saudade” to describe this deep longing to find that which soothes the Soul. It is a melancholy of being that sits within us, drawing us inward more and more to find this Divine Connection which will make us Whole. If we are indeed here to become Whole again, we are attracted to this Divine Connection, which needs us as much as we need It.

[I will explore this topic further in my musings as not to make this particular one too long and exhausting. Join me on this journey, frightening as it may be, to unknown territory that might just make sense of the profoundness of living in another state of mind.]

Home, where the heart is.

The impact of our environment on our sense of wellbeing must never be underestimated.

About seven years ago we started a small group home for people living with forgetfulness in Paarl. The third Elder to move in was Oom Michael (oom is an Afrikaans term of respect for an older man). Oom Michael was living in the “frail care” – he lived in bed, had stopped communicating verbally for a long time and needed assistance with all his activities of daily living.

The Care staff brought Oom Michael across to Huis Ina Rens in a wheelchair. He was very thin – the jacket he wore was hanging limp over his shoulders. As it was just lunchtime, the Caregiver parked his wheelchair at the kitchen table where his place was set.

We all welcomed Oom Michael and introduced him to the other two Residents at the table. No one had heard Oom Michael say a word for years. He looked up at the two ladies, put out his hands to hold theirs and said “kom ons bid” (let us pray). In a soft, gentle voice he said “seën ons Vader voor die ete, laat ons U nimmer vergete” (bless us Father with this meal, may we never forget You).

This was not a miracle – even though it felt like one. A kitchen table, a meal served with a decent place setting and a deep part of the mind kicks into action. Just that, simple.

An environment can affirm our personhood or detract from it. A hospital, clinical environment will tell us that we are sick, that others must do for and unto us.

Oom Michael’s life improved radically. He became the rooster amongst the hens, loved telling jokes, helped around the house. The way in which he improved felt like a miracle indeed.

People living with forgetfulness need to be in an environment that supports, affirms, reassures, an environment that enhances autonomy, connectedness, security, meaning, joy. The withdrawal is often not a result of the disease, but caused by the dis-ease of cold clinical environments and people who only sees a “patient”, not a person.

On meaningful engagement.

Over the years I have witnessed many attempts at “doing activities” with Elders living with forgetfulness that have really been meaningful engagement. However, I have also witnessed activities that were pure torture. In one such instance, the employees of a home “that specialised in the care of people living with dementia” (their claim) the employees put wigs on the heads of Elders (without asking their permission) and started singing and dancing with full gusto! The Elders, who could no longer communicate verbally, were more shocked than anything. When they eventually figured out that the staff wanted them to smile, the dancing crowd erupted with shouts of joy! “Look what we did – we made them laugh!” I cringed, and actually wanted to cry. It reminded me of circus animals being poked with a stick to dance – the harder you poked, the more they danced.

These were not mean or horrible employees. They did not know better, and thought that there duty was to cajole Elders living with forgetfulness “OUT OF” their state of being-in-the-world. Being quiet was considered being lonely or withdrawn – it was the jobs of the Carers to make sure that everyone was having a good time. And goodness knows, they worked hard at it.

The look in the eyes of the Elders was of pure bewilderment. They did not know what on earth was happening. No one told them what was going to happen or asked them if they were in the mood for this frivolity. It was just assumed that they would join in and have fun.

We so often get this wrong when we think that it is our duty to “entertain” Elders. It is not a creche. We are not dealing with children who need to be entertained or cajoled. In a Care Home that I started, we often heard that “Elders are just sitting”, families feeling that we “should do something with them”.

Creating an environment that supports people living with forgetfulness is in my opinion creating a space for contemplation, a space that supports them to do the things that all of us would do in our daily living. These would include making a cup of tea, looking at the garden through a window, watching a pet play, listening to your favourite music, having a manicure or pedicure, helping to cook, or clean, or iron. It is different for every individual. Remember – if you have met one person living with dementia, you have met ONE person living with dementia.

If anyone decides to clown around in front of me, put a silly hat on my head or force me to listen to singalongs, or make me colour in simple pictures, I will definitely react in a way that would not be considered appropriate. The sad thing is – these kinds of reactions are then considered to be “aggressive” behaviour of the Elder, most definitely ascribed to their “dementia”.

People living with dementia very seldom are “aggressive”. They are often irritated, frustrated, depressed, humiliated, sad. And they show this in their behaviour, mostly in reaction to the way that they are treated. Often people living with memory loss will withdraw inward more and more, simply because the world out there feels too threatening, too loud, too scary. This is when they need a place of quiet contemplation, a soothing environment that is familiar to them.

At one point the “Snoezelen Rooms” were installed in Care Homes for people living with forgetfulness – a room filled with lights and sounds and other artificial stimuli. Even though there is hardly any evidence of this working, it gave Caregivers the feeling that they were “doing something” – regardless. Yes, people living with forgetfulness need stimulation, as we all do. But their needs are no different from yours – the need to be surrounded by appetizing smells for instance. Freshly baked bread, fried onions, coffee brewing. The sound and sight of birds in a bird feeder, the wind through their hair. The smell of a garden – roses, lavender, thyme. The sounds of children laughing. Thanks to the biomedicalisation of dementia, we have now created “therapies” – listening to music has become “music therapy”, stroking a favourite pet has become “pet therapy”, gardening has become “horticultural therapy”. Life has become therapy – we even create artificial animals for stimulation!

There is a place for therapy and for activities. However, there is also a place for just living a quiet life, filled with authentic relationships, meaningful engagements and simple pleasures.

More often these activities and therapies are designed to keep employees “busy”, with little regard for any outcomes that might enhance the quality of life of Elders.

Maybe our biggest challenge is the fact that we find it so difficult to just BE. To be truly present with an Elder – even when cleaning their room, making their bed, washing the windows – is the greatest gift of validation, saying “you matter enough to me that I can be fully engaged, right here, right now, with you”. Validating the personhood of someone living with forgetfulness does not mean that you have to make them laugh or sing. As Tom Kitwood pointed out – “Personhood is a standing or status that is bestowed upon one human being, by others. It implies recognition, respect, and trust”. I would want to take this further – personhood should also enhance “agency”. Creating a relationship that is reciprocal, where there is shared power. This will happen when we start seeing Elders as our teachers. Regardless of cognitive ability, they will teach you kindness, forgiveness, tolerance, and patience. God knows, we can all do with a bit of that!