The Blackridge House

Julia Martin (The Blackridge House) recalls one of the last conversations with her mother. After several failed hip operations and seven consecutive aneasthetics, Betty’s brain was severely affected, as I have witnessed with my own mother. One cannot call this state of being ‘dementia’, for she is not demented. Nor forgetfulness, for as much as she forgets certain details, she distinctly remebers others. Getting people confused in the present, she has clear memories of those in her past. The linearity is not clear, yet the knowing insight into a life is there. She recalls with great depth her days as a child in their house called Blackridge, the house that Julia sets off to find against all odds.

In this passage Betty describes her emotional space, which sadly is also reflected by the physical space, a Care Home somewhere in Cape Town. Woven through the book is teh subtext of how this place fails on every level to be a Home, a place of Being, where people are caring and attentive and the environment supportive. Whilst being fed and cleaned, the food sounds awful and the attention to her Being non existent. As if her state of Being is not lonely enough, there seems to be nothing in the physical environment that soothes or connects. Betty loves the birds, but is reprimanded for wanting to feed them, a recurring theme in almost every Care Home that I have worked in over the past 23 years. “DO NO FEED THE PIGEONS”, and yet in every home there is someone who lives for feeding the pigeons.

I remember a home in rural Free State, where an introverted resident insisted on feeding the pigeons, getting herself in serious trouble from the Matron. Like as child, she was scolded and reprimanded. Like a child, she took no notice. And lo and behold, the pigeon food attracted mice, and the mice attracted the wild cats. One kitten became very tame, and loved the attention of the resident (and the fat mice). Slowly but surely the kitten was lured onto the window sill, and eventually through the window. This particual resident was known for being sullen, an introvert, not someone in whose room the staff would spent a lot time. Then, someone said that they heard loud laughter from behind the always closed door. “Not possible” was the reaction, she never laughs. Some of the staff listened behind the closed door, and confirmed that the lady was laughing out loud inside the room. Of course, the verdict was “Alzheimer’s!” – she had finally ‘lost it’!

Weeks and weeks later her secret was discovered – the little kitten had moved in. It was a crazy tabby, taking over her room with the joyful vigour that only a kitten can produce. Up the curtains, across the top of the cupboard, underneath the bed, running circles across the room. Joy. Unconditional love. Connectedness. Meaning.

This is Strepies, bringer of such meaning. (I took the photograph after hearing the story from the staff on one of my visits.) Dementia is not dehumanising. It is the way in which we treat people that takes away their humanity, the rules and regulations, the fear of risks, the task orientated, medical approach.

Whilst Betty finds her being-in-the-world frustrating at times, her teachings are profound. She opens up new possibilities for connection with her family. “Family – truth – family. Sometimes it was the gift of dementia to free her words for the creative slippage. And sometimes the reduced inhibitions of her condition took her right into the emotional heart of the unspoken”. The gift of dementia, if only we will dare to go there, to engage on their terms, to be in their space. Julia gets to a point where it does not matter that her mother forgets that she is her daughter, or where she repeats the same story. There are moments of such clear articulation of wisdom, but they only come with time and patience. Through the thick rhizomes of the bamboo, shoots sprout up where they are least expected. Beautiful green shoots, new green unfolding potential of growth and life.

“I explain as best I could what I’d been reading about the hippocampus in relation to other parts of the brain. That the shrinking of the hippocampus can mean it’s difficult to form new memories, while your oldest memories may still be intact”. ‘Once you get that into your mind, you don’t feel so responsible’ she said (Betty, Julia’ mother). ‘But what is the mind then? I think mind is the working part – and that’s certainly very busy’. She continues as few moments later: ‘There may be a reason for your mind to forget something you don’t want to remember. If it’s a thing you can’t handle, you put it away and you forget it as though it didn’t happen.’

There is a pattern in the rhizomes that grow underneath the surface. This complex network of thoughts and memories and feelings and ideas are indeed a tangled web, woven by our minds’ play with consciousness. And the more we try to order it, the more it confuses us with its subtle idiosyncrasies. It is not ours to know or to define or to order. It is all very tiring. It requires patience. Endless patience. If that is all that it teaches us, it is a lesson worth learning.

The Lake

In her book “The Blackridge House”, Julia Martin tells the story of trying to find the house in which her mother grew up. Her mother lives with neuro-cognitive impairment. She has wonderful moments of remembering. In one of these remembering moments, Julia says to her: “You know, even if your memory gets mixed up, your mind is still as articulate as ever”.

This is so beautiful. We all get our memories muddled, we get names and places wrong and forget details. If I think back on my last trip to Melbourne (where I am at the moment), a lot of it is blurred. Every now and then I remember a detailed event. I do believe that there is simply too much information. We read more, travel more, have more access to information, things are faster and coming at us with the speed of light.

A few nights ago, I had the wonderful privilege of having dinner in Melbourne with my guru, Dr. Al Power. As we arrived at the restaurant, my jet-lag kicked in. I suddenly became fuzzy, I could for the life of me not remember the name of the book I wanted to tell him about, and had to think long and hard what the name of his daughter (whom I know well) was. Added to that the noise of the restaurant, and I had to get up and go for a walk outside. When I came back, I told Al about this. He said that he thinks this kind of jet-lag gives one an impression into the world of someone living with dementia. The thought hit me between the eyes – YES! THIS must be what it feels like! And it scared the living daylights out of me…I could not articulate what I wanted to say, the thoughts just literally disappeared. I felt fuzzy, could not focus, and felt like a complete codwoddle not being able to remember the name of his daughter. I did not know how to explain myself. Only someone like Al who has experienced jet-lag quite often, could identity with the way I was feeling. And, having spent his working career working with people living with dementia, he could put the two together.

Being articulate of mind is different from reproducing linear, factual story lines. For me, it means that I can give expression to thoughts, feelings, insights that do not necessarily have to be in order or sequence of events. It does not have to be coherent in telling a story or relaying facts about events. We use the expression “to speak one’s mind” in the context of expressing an opinion. It goes beyond that. So often, people living with dementia will say things that do not ‘make sense’ to us, with the result that we mostly ignore what they say. Or we correct them, putting their words in a sequence that makes sense to us. This sometimes leads to arguments or disagreements.

Just last night someone told me about his mother who now needs 24/7 care, which is provided between him and his four siblings. (The wonder of an Italian family!). Even though they never leave their mother alone for long periods of time, she accuses them of neglecting her, treating her like a dog and not caring about her at all. This hurts, and of course they try to set the record straight. An expression of the mind of the person living with dementia is often not contextual, yet it uses the context at hand. I think what his mother is trying to tell them is how she feels, using their being with her as the context of expressing her hurt and anger with her condition. She feels cheated, deserted, confused, angry. Her only way of expressing it, is to use the tools at hand. It is not for us to argue with this…

We need to learn to listen with our hearts, and to be the ethnographer, finding the source of the communication. This is not happening on the surface, it is delved from deep within the essence reality of the mind. It is raw, it sometimes escapes unfiltered and unedited. The trigger is pulled before aiming, it hits like buckshot. And yes, it hurts. There is nothing wrong with feeling hurt, we are human. But we should also start to learn to listen to the mind, and not get caught in semantics or over interpreting facts, acknowledging, validating.

At a later point Julia’s mother says when asked a question: “Angaas. There are vast lakes of unknowing in my mind”. Again I find this sentence so pognant. She does not say that there is nothing, or vast areas of nothingness. There are lakes, deep dark, brooding lakes, at times. Or crystal clear sparkling lakes, at times. But there is something, vast lakes. Lakes of unknowing, as opposed to lakes of nothingness. It must be frightening at times to go to this lake, waiting for the Loch Ness monster to appear…or perhaps this lake could be a source of calm, of inspiration, of reflection. Perhaps the mirror image on the lake is no longer what we thought it would be, and is more like a mirage, an image of dreams and mind. Certainly the narcissistic reflection is now distorted, creating new and unknown reflections. It makes it non the less real. This is what it is. And we should endeavour to explore this lake with the person living with dementia, sitting quietly, Being there. Every time we react it is like throwing stones across the crystal clear surface, we disturb the equilibrium, making ripples and waves.

This place, this lake, is now a place of Being. Take the time, pull up your deckchair, and rest your eyes and your mind in the unknowing. Start to unload, unwind, unpack, undo. Maybe, just maybe, you will find a treasure.

Leonie

Nothing like a 21 hour flight to catch up on podcasts and Netflix. My friend Leonie Joubert’s podcast with Lee Rael (MASTER wizard of unearthing a story) is first on my list, long overdue… Leonie is a climate change activist and science journalist (amongst many things). We know each other socially, and it is intriguing to hear her in her professional capacity. Articulate, eloquent, knowledgeable, honest. We met each other only in the past year or two, but there was an instant connection and the friendship has developed to a very close one.

There are a few things about the podcast that linger with me. Leonie says that we all have a “yearning for this bigger thing – we have become disconnected from nature, or distracted, focussed only on extracting from nature, instead of being part of nature”. She makes the very logical statement that the earth is our home, in fact our only home. And if we destroy it, we will not suddenly be able to get onto the ark with Noah and sail for another home. We will be screwed. She also connects mental health issues with the reality of climate change – the feelings of being overwhelmed, depressed.

One of the Netflix series I watch is about the pharmaceutical industry, and how it is manipulated for profit. Essential medication (in the USA it is insulin amongst other things) is becoming so expensive that people literally cannot afford to buy it. Within the medical model, the pharmaceutical industry has become one of the biggest capitalist, profit driven systems. Our society is making people sick, and many are prevented from getting affordable treatment. This is not only a developing world problem, the USA is top of the pops, and alternatives like psilocybin and cannabis are simply pushed out of the equation for the risk that it might be too cheap!

Considering all of this from a broader perspective, we have now fallen into what Leonie calls an “eco-system collapse”. At the rate that we are destroying insects, we will very soon not be able to grow the food that is needed, forests make way for grazing, more and more fossil fuel is mined and the atmosphere polluted. Extreme weather conditions make for devastating droughts, horrific storms and cyclones and raging fires.

For me, the eco-system of families, our social connectedness, is a very real and lethal threat to our wellbeing. The separating of older people is contributing to the eco-system collapse, separating them from society, institutionalising them. It deprives the rest of us, and especially the children, of learning opportunities that cannot be substituted by any amount of IT. It cuts us off from the circle of life. We are ecobiopsychosocialspiritual beings. When we take one of those building blocks out of the jenga structure, it will collapse. And we have done it.

Our existential crisis has become one of “making sense of the world”. What are we doing here? Is there any hope? What does the future hold for us? While we are constantly trying to measure and label, quantify, explain and control, we seem to move further and further away from a real sense of knowing. We see more and more people with mental health issues that simply are not held within society, that are pushed to the edges, lost to any sense of belonging. And yes, the same goes for older people, and more so older people living with dementia.

(This infographic is based on the talk of Dr. Bill Thomas at the Eden Alternative Conference in Brisbane, Australia).

We are not only failing older people. The bigger tragedy is that we are failing young people. Not only have we managed to just about destroy our natural habitat, but we have managed to prevent our youngsters from growing up with their Elders. We are sending young people into the world without the values that only Elders could teach them. These youngsters have no idea of or connection with wisdom, with deep spiritual insight, with the notion of patience or self-reflection, of humility, of service. They somehow only know ME, and the world according to ME. They think no further than their own need for immediate gratification. They are selfish, short-sighted. It is not their fault, it is ours. We have denied them the privilege of their Elders. And yes, they are angry. As much as we must help to repair the earth, we will need to start integrating intergenerational living back into our communities if we want a longer term strategy of making sense of the world. We need a broader perspective, we need to be challenged on every level of our understanding of what it means to be alive on this planet. It is from diversity that we learn to question our own assumptions and perceptions. It is from being challenged by people who are not our age, not from our culture, not sharing our belief systems that we expand our knowing. The more homogenous a society we create, the more shallow our knowledge, and more short sighted our decisions.

Brisbane

Robert Andrew is an Australian artist and descendant of the Yawuru people. His art installation at the Institute of Modern Art in Brisbane is technically fascinating.

“Country might be interpreted as interconnecting spiritual, cultural, physical, and historical relationships with the land, water, sky and all living things …these complex connecting layers through the interplay of energy and matter.”

Country, circularity, interconnectedness, energy and matter, presence and consciousness… I cannot help to think of the thousands of South Africans who have left their country to move to Australia, and what it would feel like to leave the soil of Africa forever. The peace of this country is alluring, almost mesmerizing. We are not used to this level of safety. Seeing young women/girls walking outside alone at night is unusual. One suddenly becomes aware of how we live in constant fear in South Africa. It is real.

Looking at the installation I cannot help but think that our Being-in-the-world is a bit like the rope buried in the concrete. Slowly but surely the rope is unearthed, leaving behind what seems like chaos, disruption, mess. As the rope escapes the set concrete, pieces of earth are flung all over the floor. The rope is then very slowly spun to create symmetry and order. Very slowly a pattern is formed. On the other hand, the core of the earth is exposed. Raw and vulnerable.

Living in South Africa, I think we all sometimes feel that our core is ripped open, leaving us extremely vulnerable. The contrasts of beauty and cruelty, life and death, rich and poor, healthy and sick are a daily in-your-face reality. You cannot escape it. The desperate pleading faces of the people looking for work next to the road. The grieving faces of a family whose daughter had been brutally raped and murdered. Slowly but surely we feel that our layers of protection are no longer effective, we feel raw and exposed.

As we grow older, this vulnerability is exacerbated by the way in which society positions older people, especially those who live with memory loss. Many older people feel that they no longer have a purpose, but more so, that they have so much to feel guilty about. Were they good enough parents? Why did they not do more to prevent climate change? Why did they not fight harder against Apartheid? What will happen if they outlive their savings? Would they become a burden to their children? For those who do not have children the fear of being lonely and helpless can be overwhelming. Slowly but surely, this fear eats away at one’s sense of self worth and independence. These feelings are often not shared or verbalised, quietly churning away inside, escaping only in the dark of night when you lie awake, worrying about the future.

We need protective layering. Life can be cruel and people unkind. Sometimes the protective layering becomes an outer shield – the friendly face we present to the world. We adapt our communication, develop strategies that help us cope, make us fit in, feel that we are part of something out there. We become part of the consensus reality where we agree to the norms and standards of society in order to be part of a broader tribe. Often as we approach our late fifties this starts to change. We enter an era of discontent. Our menopause leaves us grumpy and sweaty. We lie awake at night, contemplating. Worrying. Fretting. We wake up tired, our nerves are raw and our sense of humour distant. People begin to irritate us more and more, and we are no longer interested in the tribal connection.

This process can go in one of two ways – individuation or mid-life crisis. Either way is messy, but the latter seldom has any good outcomes. When the novelty of the new hairdo/car/botox/girlfriend/lover wears off, we are inevitably faced with another opportunity for individuation. It is the course that we should take, albeit kicking and screaming. And it is in this process that we start to be stripped like the concrete block in the art installation. Layer by layer we are exposed, revealing our Core, our essence reality. It is the rope that is deeply embedded in us, our Soul, that is escaping the mould, ripping apart what seems to be our very Being, shattering pieces all over the place. But what is revealed is pure and solid, the rope forming a perfect pattern, the pattern of our Connectedness to everything on the planet. No amount of fretting or fear or regret will change this, and the sooner we realise that we are part of the Pattern, that indeed we are the Pattern, our deep inner peace will come.

I see this happening with people living with dementia. Sometimes the stripping of outer layers goes deeper than intended. Some people get stripped to the bone, exposing them to severe vulnerability. They enter an altered reality and state of Being-in-the-world where they no longer operate on the consensus level. Try as they might to “fit in” or adapt to the world out there, their different reality is just not compatible. The conflict, frustration and helplessness that they experience in trying to Be with us can hurt deeply and cause total withdrawal. It is only when we begin to see the pattern of the entire tapestry that we can make sense of the whole. Looking too closely, we have no perspective. We only see the trees, and not the forest. We are not sure whether we should look closer or stand further back. We need to do both, we need to circulate – go deep inside and step far back. The circularity brings us back time and time again to the interplay between energy and matter, until we eventually realise that they are the same. Matter is energy, energy is matter. Mind is Soul, and Soul is Mind. I am enough. I AM.

The person living with dementia is living in the I Am. There is no more aspiring to consensus reality, yet sadly consensus reality keeps on trying to draw them back into the world of what we call reason. And the more we try and pull them in the more they will resist, often kicking and screaming. What if this altered reality could be rephrased or reconstructed, given a different status, viewed through a different lens, narrated with different words, reflected with different images? Somehow we are not there yet. I hope that as we grow in our Selves, we will begin to grow in our ability to move beyond the apocalyptic rhetoric of the biomedical world, that we will begin to see our Selves and others as One. That we will not notice the difference, but honour the sameness.

(From the introduction to The Blackridge House, by Julia Martin).

Clean up the filing system

A friend of mine’s son of 14 made the remark that if we were to be immortal, our brains would eventually have to start deleting files from storage in order to make space for new files. I like the analogy, and think he has a point. We have some files that take up lots of space – our childhood trauma, the death of a loved one, the long divorce. Often, when we do not deal with these files, they actually stay open on our desktop and take up a lot of space. Maybe we are not ready to delete them, but leaving them open on our desktop means that they are literally in our face. Every time we start the computer, this file is opened on the desktop, and search around in the background for updates, churning away through other files to see if there are relevant information for it to add. These files slow down our system.
Often it is very difficult to clean up a file. The death of a child, the betrayal of a friend or lover often stays in our conscious minds and affect everything that we do. How do we delete this file? I don’t think it is possible. Yet, over the years this file will eat more and more, take up more and more disc space and prevent us from opening new files, reminding us of its presence every single time we start up.
I think it is important to clean up our computers from time to time. Mayne not necessarily delete what is on the desktop all at once, but maybe store it somewhere else. Start with a folder somewhere that it is not visible on the desktop. Then maybe on a cloud somewhere, or an external hard drive. As we get older, we need to create space. We need to clear our desktop to be able to have a clearer, cleaner visual image of who we really are. We need to start looking deeper and deeper inside, past the desktop, to find our operating system. What is it that really defines us? What is our essence reality – that deep knowing of what we feel is our Truth? How do we tell our story? What is the narrative we use?
This young man’s analogy made me think that perhaps for many older people who lived a long life this is exactly what happens. Some of the files get dropped, perhaps accidentally deleted, perhaps corrupted. A corrupted file does however not necessarily affect the motherboard of the computer. (Interesting that it should be called a motherboard…). I do believe that a shift in consciousness is what happens when people’s minds start changing. The loss or shift of files is essential. We need to clean up the desktop, make space. This could result in an altered reality that seems strange, out of the ordinary, even weird. And herein lies the challenge – what do we do with this change, this different reality, this altered state? Let us consider it not to be something that we should diagnose as a syndrome…
This has been said many times. The shift in mind, the so-called ‘memory loss’ or dementia – what if we framed it differently? What if we see the brain pathology in terms of more than just the physiology? What if we start paying very close attention to that which lies beyond the pathology – the Soul, or the Mind? I want to propose that we will be pleasantly surprised. I want to quote Dr. Al Power again: “WE must change our minds about people whose minds have changed”. If we change our medical gaze and the narrative of deficit and decline, if we construct a habitus that is inclusive, embracing, honouring, people whose minds have changed will no longer be ‘demented’.

in limbo

I was supposed to fly to Australia on Saturday, but my visa did not arrive. It still has not arrived, it is now Monday. I have missed the conference at which I was to present a paper. Hotel bookings, flight changes, conference registration fees – gone. And I wait…
I could not help but think of the millions of older people who are at the mercy of bureaucrats on a daily basis. Waiting for the pharmacy to deliver medication, waiting for the results of medical tests, waiting at a clinic for the entire day without being helped, waiting for their food, waiting for someone to take them to the toilet. Somehow, today, it dawned on me how dreadful it is to have to wait without knowing how long it will take…
Recently I had a biopsy and had to wait for the results – it was terrible. My doctor was very kind to phone me the second he got the results, yet I hear of so many people who have to wait for weeks to get results for a biopsy. The feelings of utter helplessness, having zero autonomy, not having a clue when you will know what is going on. More than that, the feeling that you do not really matter, that what is important to you is only important to you and to no one else. One feels robbed of your dignity. Suddenly you realise that you are actually just a number.
One of my many pet hates is when people do not inform a person living with dementia of their planned course of action. Even as simple as “I am here to help you to take a bath”, or “I am here to take your blood pressure”. Simple, yet people often assume a position of power where they do not see the need to inform those “lesser beings” of what they intend to do. They are in control, they know what you need, and you can wait for them to do it. No questions. Somehow it sounds trivial and petty, until you are on the receiving end of this behaviour. Suddenly, I feel outraged. How dare they? Do they not know about my conference? Do they not know how much money this has cost me? Do they now know…? Well, do “they” actually care?
As we grow older, we seem to become more and more invisible. There are so many assumptions being made about us, what we need, what we want, how we feel, how we should feel. No wonder so many older people feel that they are a burden and start withdrawing or feeling terrible about asking to be informed. We have the right to be informed, always. Yet, when we get older and slower, people often assume that we no longer want to know, that we no longer care. That we leave ourselves at their mercy because “they are the experts”. And we like lambs to the slaughter allow medical procedures, medication, interventions to be thrusted upon us, sometimes with dire consequences. Because we simply do not matter anymore.
We all need to have an apprenticeship for this Eldership phase. To learn to be integrated, to know who we are, to demand to be informed, consulted, negotiated with. I see this all the time in my world – older people being shunted from pillar to post in a system that has no idea of the impact of their power. It is nothing short of the worst form of bullying! Wether this is your children deciding about your finances, your place to retire, the way you drive your car, the way you do your hair or apply your make-up or spend their inheritance. It is time for Elders to rise, to stand tall (even if it is with the help of a walking stick) and fight the system. And it is for us in our 50’s to embrace our apprenticeship…
What kind of an older person are YOU going to be? We all become more of who we are as we grow older. But you can change. You can decide to be different, to demand respect (to hell with earning it – we all deserve it), to insist on being informed, to insist on being seen and heard. Too many bullies get away with their behaviour because they are not being called out. As a paying customer, you have the right to demand to be informed, to be treated with respect, to be heard. Start practising now. Learn to use your voice, demand!
Of course non of this with help me with getting my Australian visa any sooner. But I have learned in this process what it feels like to be acted upon with having any power. It is not a feeling that sits well with me, and I am more determined than ever to give people a voice, especially people living with memory loss. It is a basic human right to be heard, to be respected, to be informed.