Consensus reality

I am sure that we are all confronted from time to time by the three questions:
What could we do? What should we do? What DO we do?
I am confronted by these on a daily basis, often wondering what the basis of my decisions is. Of course I want to do the right thing, the ethical or moral thing. When someone is begging at the traffic light, should I give them something? Morally it is the right thing to do – I have a lot, that person has nothing. Then the logic (consensus reality) sets in. If I give the person money, they will be encouraged to come back again tomorrow to beg because I have shown them that it is worth their while to beg. What other options do I have? Should I try and give them a night shelter voucher? Perhaps try and find out what brought them to this point? Or do I simply look down at my phone and hope that the light will turn green any minute. There is a lot I could do, I am not sure what I should do and in the end I do nothing.
I suppose this would be rational decision making. However, how much of this is actually rational, and how much is about self preservation, avoidance, denial, selfishness? Consensus reality makes it very difficult, as there is very little consensus out there about what the right thing is to do. So many people, so many opinions.
A very similar dilemma comes to the surface when we talk about people living with dementia. There is more and more research into what we could do. Therapies and activities and centers and organisations that specialise in possible positive outcomes for people living with dementia. In fact, there is now a global industry in providing therapeutic interventions for people living with dementia. Maybe we should give it more time, but to date very few of these actually show much benefit. Yes, there is momentary relief, fun is had, belly laughs and full voiced sing-alongs are heard. It is great, really!
What DO we do? We stubbornly refuse to see or to look beyond consensus reality. As long as they laugh, participate, clap their hands, eat their food, get to the toilet on time, sleep well at night we have done well. The minute the consensus is challenged we run for medication. “The other people do not want to see them”. “It is not nice to see someone mess with their food”. “They cannot just say things and hurt people”. In other words, if they do not fit in, we have to make them fit in, or remove them. It is such a complex catch-22 situation. The more we marginalise, stigmatise, isolate, remove and medicate people, the more difficult it will be for us to understand them. How will we ever learn to communicate with people whose minds have changed it we are not prepared to change our minds?
If we can change our minds about people whose minds have changed, we will see a different reality. If we can go deeper than consensus reality and explore the reality of an altered consciousness, a different way (NOT a lesser way) of being-in-the-world, we will discover essence reality. That place where we know our Connectedness with every living Being – human, animal, plant. And if we can see that Essence in the person who no longer cares about consensus, we will treat them differently and they will react differently. Why is this such a difficult concept for us to grasp? Is it based on fear? I have no idea. Today I visited the Hangberg Senior Club again. I go there with my filters (“poverty, illiteracy, alcohol abuse, unemployment, state grants, lack of education” etc) and see exactly that. Now that I have learned to see beyond consensus, I spend an afternoon with a group of people who carry with them the Essence of what so many of us have lost. Their spontaneous praise to God or Allah, their deep gratitude for Life make me humble and deeply ashamed. For I cannot see beyond my filters, my indoctrination. I battle to not judge or question.
How do we unlearn our prejudice, our need to control, predict? How do we unlearn our desperate obsession with consensus? I don’t know, What I do know is that if we are not prepared to face our consensus obsession we will never honour the Essence of people living with different abilities. And people living with dementia will never flourish until we see them as PEOPLE firstly and living with dementia secondly.

Care of the Mind

Caring for the Mind
For the past week I have been doing a daily meditation of gratitude and prosperity early in the morning, before I start my day. Caring for the Mind (in my opinion) takes on so many forms. Just like our bathroom routine in the morning consists of a number of actions, so should taking care of the Mind consist of a number of actions.
Many years ago I read “Care of the Soul” by Thomas Moore. One of the things (sad that it is one of the few things I remember) that he suggested was to look at the way you treat yourself, for instance, when you make yourself a cup of tea. I then came into the habit of really taking care when I make tea for myself. Always in a pot, decent tea, a cup with a fine rim, first the tea, then the milk. (Yes, many disagree on this simple act!). Thing is, a cup of tea has such significance. When things get tough, we offer someone a cup of tea. It soothes. Do it properly.
Caring for the Mind means that we should be Mindful about what goes in, very much like being Mindful of what we eat. Facebook first thing in the morning is a bit like having a beer and two cigarettes when you wake up. And a slice of cake. The gumpfh (mostly) that we are fed by the algorithms feed our addictions, tarnish the blank canvas with which we wake up, sets the pattern for the day.
When we think of a vulnerable person living with memory loss, cognitive impairment and/or frailty, we are mostly at the mercy of other people. I still think that it must be terrible to not wake up when you feel like waking up (being woken at 04h00 by someone who wants to “wash” you), not being able to just lie in a little, then go to the bathroom, then make yourself that much needed first cup of something…but having to wait until 08h00 that a big pot of lukewarm, middle of the road whatever comes your way, perhaps poured into a plastic mug that has seen better days judging by the teeth marks on the rim…
When are dependent on others, what priority is ever given to the needs of our Mind or Soul? What moments are created to sooth the turmoil of confusion or forgetting? Do we create a space of tranquility, of gentle quiet where our Minds can be at ease? Between call bells and cleaning routines, trolleys in the passage and overhead announcements it must feel like living in the departure lounge of Heathrow airport. My Soul would die a slow death…
In the past year I have become more and more aware of the fragility of our Minds, our inner world that is so easily disturbed and upset. We spend our days (if we are at all Mindful) worrying about what we said, how we look, climate change, crime, family matters, money, our jobs, the weather. We are busy from the moment we open our eyes until we shut them at night, often forgetting the care that our inner landscape needs. We go to the gym and run up the mountain, walk the dogs, cook and clean. But how much time do we spend on cultivating a rich inner landscape, a place of refuge when one day when we can no longer run around and go places and eat out, we need to retreat to? Imagine if tonight (God forbid) you should get a stroke, paralysed, confined to a bed, and all you have is your inner landscape. Your thoughts and memories, your Mind. Not able to do anything for yourself, others fussing and making decisions on creating a life worth living for you. What music would they play for you, if any? Would they know how you like your tea? What your favourite food is? How you like to sleep, your preferred toothpaste? Will they simply leave the television on and walk away? (Please do read “The Diving bell and the Butterfly – about locked in syndrome). But more importantly, what would it be like to spend day after day on the inside of your own Mind? When the outside world is confusing and chaotic, your Mind will be your only companion. Would it be a healthy place filled with positive thoughts, loving feelings? What would go on in your Mind when your loved ones walk through the door?
Again, the best long term investment you can make is to nurture your Mind, to take care of your Soul, to create an inner sanctuary in which you can dwell. Thoughts, like a garden, in which your weary Soul will rest. Peace. Tranquility. Love. Affection. To invest in becoming that person who others want to spend time with, regardless of your ability to communicate verbally.
Your Mind, in fact your Consciousness, will never disappear or be eroded by old age or cognitive impairment. Make sure that everyone who cares about you knows how you would wish to be if you can no longer communicate verbally. Write it down, talk about it, make peace. Death will come for all of us. Make sure that when it comes you have completed your journey. That you have peace, that you have lived in every moment, used it all. It might happen tomorrow!

“Come of Age”

I am listening to the audiobook of “Come of Age”, written by Stephen Jenkinson, who also wrote “Die Wise”.
“Stephen is a teacher, author, storyteller, spiritual activist, farmer and founder of the Orphan Wisdom School, a teaching house and learning house for the skills of deep living and making human culture. It is rooted in knowing history, being claimed by ancestry, working for a time ​yet to come.​”
“In his landmark provocative style, Stephen Jenkinson makes the case that we must birth a new generation of elders, one poised and willing to be true stewards of the planet and its species” says the description of “Come of Age”. At chapter four the man has me so depressed that I wonder if I can continue. Not because he writes badly or that his topic is not relevant. On the contrary, his topic is so real and so relevant that it scares the living daylights out of me. It is about ageing.
The writing is truly poetic, with gravitas in his own reading. He describes old people as “the trash on the landscape of their older adult burdened children”. It hits the wind from my gut. What a horrible statement. And yet, in many cases so true. Older people are often discarded, like trash flying around the landscape, blown in the wind to be caught in the fence of some institution. Caught, to be weathered and worn by the harsh elements, slowly decaying and decomposing.
“NO!”, I want to shout, this is not true. You are too cynical. And yet, I wish I knew the statistics of where true filial piety is successful, the percentage of children who really and truly care about their parents, who look after them, not with money or the occasional visit but with genuine, loving care. We have become just too fast, too self-centered, too busy to care. And in the interim we have created this vast enterprise called “aged care”. The human dumping site, where samaritans scramble to help those who have been discarded.
Somehow, this scares me more than climate change. Maybe because everyone is talking about climate change, I have some vague hope that my learned friends will come up with a solution. That someone, somewhere (the Greta Thurnbergh’s of this world) will make enough noise to help save the planet. There is very little noise to create a different world for older people. On the one hand we do everything in our power to extend life. Longevity. On the other we battle to legalise assisted suicide for older people. Why does that dichotomy not sit well with me? What am I missing…?
I suppose we go back to “the good life”, that which according to Plato we all desire. But do we even know what we mean by “the good life”? Somehow I get the idea if it does not involve perky boobs, no wrinkles, fit as a jockey, razor-sharp brain, lots of money and awesome sex (a lot of it too) we would not consider it to be “good”. We cannot stare ageing in the face, least of all our own face. We have to stay young, we have to “successfully” age, defy ageing, be productive, whatever that might mean. It has to be perfect. If not, please let me opt out.
I will continue to listen to the audiobook, and keep you updated with the (God I hope) good news to come. I see no silver lining (pun intended). We need movement as huge as that of the climate change movement, we need to become activists for ageing.

A new decade

Can we hope for a new dawn of thinking around cognitive impairment? I find that it becomes more and more difficult to engage with “main stream” thinking around people living with cognitive impairment. And yes, I insist on not using the word dementia. I know so many people who are living with cognitive impairment who are certainly NOT demented. Why do we want to use this label when its semantics clearly implies something that is so devastating. The word “demens” stems from the Latin root meaning “out of one’s mind”. My Mother is NOT “out of her mind”. In fact, I find her to be very much IN her mind. She is completely aware of her memory problems. She is acutely aware of not wanting to make a fool of herself. She is incredibly mindful in her efforts to try and be present, to follow conversations, to try her utmost to function optimally. She is definitely not “out of her mind”. I started this series of blog posts with the saying that “if you have met one person living with dementia, you have met ONE person living with dementia”. While we desperately try and label and categorise people living with cognitive impairment in order for us to make sense of their world, they are desperately trying to avoid our stigmatization. While they try to maintain individuality and significance, we tar them all with the same brush of “dementedness”, listing a host of so-called “symptoms” that inevitable demeans and devalues their unique personalities. The more we “put” people living with cognitive impairment in institutions, the less we will learn to live with them. The more we ostracize people, the less our children will learn from them. It is not humane, nor does it serve our humanity to remove people living with different cognitive abilities from society. It does not serve our humanity when we are no longer confronted with difference, when we are no longer challenged in our communication, when we simply all live happily ever after. It is in our differences that we find our connectedness, not in our sameness. The more we create echo chambers, the less tolerant we will become, the less kind and the less forgiving. The more we see the Trumps and Boris’s of the world poke fun at “the other”, the more we exacerbate racism and other-ism. The same goes for older people who live with cognitive impairment – we have unlearned our ability to be with them in an inclusive society. We simply cannot tolerate the fact that they might be slower, that they might not comprehend or that they might need extra attention. It does not suit our lifestyles. So we “put” them in places where they need “professional help”, creating ghettos for which we tap ourselves on the shoulders thinking that we have done the right and the moral thing. Let’s go into this decade fighting ageism and able-ism. Let’s speak out, take stock of our own prejudices, become introspective, stand still and ask ourselves “how would I wish to be if I should become cognitively impaired?” Would I want to be in a room in a facility with only people who are also like me? Not ever see children, pets, prepare my own cup of tea, plant seedlings, fry an egg or simply sleep late? Would I want to be tied to a chair? Would I want to be fed liquidised lasagne? Maybe through a tube in my nose? It is time to rethink the future of ageing. It is time to change our discourse, to rethink what we envisage for ourselves. We have done the damage to this generation. We are next. How would YOU wish to be? And is this is not how you envisage ending your days, then start speaking out. Make a noise. Become an activist for you own future ageing. We are all on our way there….