The full moon…

The full moon slowly appears, following her own magnificent glow. The mountain is edged blue in the brilliant reflection. A soft rain drizzles on the leaves, forming plump drops that fall audibly on my glasses as I try to appreciate the magnificence. A gentle, icy wind cries around the corners of the house. Just like that it is winter again, the strangest of winters this 2020 winter. A coldness has crept into the corners of our society. Harsh and biting.
COVID-19. We have had enough. We need to feel hugged again, connect, be together. This strange, enforced detachment might suit some people. For many it is winter. Dark, biting, harsh. Now more than ever I am aware of the importance of relationships, of our connectedness, of how we become through others. Ubuntu. And how much of that we have lost even before COVID. How selfish, exclusive and detached we have become. And how we now realise the impact of our actions.
I think that for many older people the regrets of a life not fully lived must feel a bit like the COVID lockdown, when you suddenly wake up one day and realise that there are so many things you should have done, that you no longer can. If I think about how I miss a long table with friends and fabulous food, laughter. How I miss travelling, just getting in the car and going away for a weekend to visit my Mother. Of those incredible hugs as my friends come through the gate, the warmth of visitors.
The scars of this lockdown will hopefully teach us the importance of connectedness and how fleeting time really is. Nothing will last forever. Everything we do is an investment towards our own quality of life. We must prepare the soil, sow the seeds, make the memories, cultivate the garden so that one day when independence and memories fade, we have connections that are secure and solid. The deeper the memories, the more difficult for them to fade. We must dig deep, secure the things that we want to keep, the things we will need to treasure when we can no longer jump in the car and visit friends or travel to exotic destinations.
But more than anything else I see personalities come to the surface during COVID that scare the living daylights out of me. People who have become miserable beyond measure, acidic, cynical and downright horrid. Nothing escapes their ire. I cannot help but think what they would be like one day when they are old and life is a bit like COVID-2020. Go and look in the mirror, ask yourself what kind of person you have become in the last few months, and let it be an indication of the type of old person that you might be one day…


On Elderhood…
My friend Julius Oosthuizen sent a link to the interview of Stephen Jenkinson with Andrew Wilcox (Exploring Wild Ideas by Orphan Wisdom). Jenkinson has a way with words, ordinary words. Like someone taking foliage from a garden and making the most striking arrangement, Jenkinson arranges ordinary words to extraordinary effect.
He talks quite a bit about “social media”, and how in fact it should be named “anti-social” media. The more time we spend on our devices, the more alienated we become from each other. The more we think we get to know each other, the more we learn that we hardly notice each other in real life any longer. This way of communicating is also about our sameness, our echo chambers of sameness. We have not only become indifferent to others, in fact we have become quite fearful around difference. Whether that difference is skin colour, age, opinion or sexual orientation, social media herds us together in creating a fear of the “Other”. And it provides all the answers. We simply have to think of something anywhere close to our so-called “smart” phones, and the next thing it will give us an advertisement or opinion on Facebook. Voila! No need to think.
We have become masters at formulating everything. We are in charge, science has proven, facts are clear and knowledge is king. Or is it? If this was the case, why are we so fearful? Why are we so defiant and angry? Jenkins points out that “men are so skilled in anger”, simply because it is a cover for sadness and loss. Never before in the history of the world have men felt so out of control, albeit only (for some) because they cannot walk into a bottle store, buy cigarettes or send their children off to school. Of course this anger phenomenon has been part of the male psyche since long before COVID-19, it is just shining very brightly under the spotlight at the moment.
The problem with formulating everything and being “in control” of everything, is that we have lost our sense of the mystery. We have simplified and dumbed down our being-in-the-world to only acknowledge that which science has proven. Well, see where that got us! A global pandemic, filled with conspiracy theories and angry people. And death… Well, let’s start with death – always a good point of departure. I have said this many times, and for the sake of not sounding like a repeat message when trying to phone Telkom offices, I will not embroider again. Well not in detail.
What are we so scared of? What – in our silly minds – is the worst thing that can happen to us at this time? The absolutely, ultimate worst thing? We will die. Well, I have news for you – we are all going to die, sooner or later. ALL. OFF. US. Yes, you too twenty year old masteroftheuniversemillenial. Jenkins says “you do not own the architecture of your own life, you are entrusted with it.” Take a deep breath, read that sentence again. And again. This is not YOUR life. It is not a personal possession. You are but passing through, in this form, for this period of time. It will end.
I do not really care what your beliefs are, nor what you think happens after you die. Quite often I think we dodge the reality of death because “ we do not believe in any life after death”. That is not the point! The point is death itself, and our absolute terror of it. What is it that makes us so scared? Maybe the mysticism of it? Perhaps the fact that we dare not contemplate our own mortality, because it does actually scare the living daylights (pun intended) out of us?
Jenkins does a beautiful semantic breakdown of the word AWAKE, as in the opposite of ASLEEP. Yet, it has little to do with SLEEP. The prefix A refers to “pertaining to..”, in other words “pertainingreferring to WAKE”. Now the word wake has two meanings that can be brought into this context – one being the wake after a funeral, the other the wake that we leave behind us in the surf when we ski or steer a boat through the water. (He jokes about the fact that one cannot be at one’s one wake…think about it!)
He then makes this statement, which I would urge you again to read a few times: “You have been gathered into the web of consequence that emanates from everything that you have done, everything that you haven’t done, everything that you are still going to do…” and so forth and so on. He carries on: “inhabiting responsibly this trail of consequence…to participate in it, not to control it so much…to participate purposefully with a high degree of conscience, as well as regret…”
COVID-19 is our opportunity to see ourselves within the context of the mystic nature of Being. To elevate our thoughts, and to contemplate our own mortality. I often think of the phrase “a God fearing man” – what does it really mean? I think it implies a respect, living in a way that shows deep consciousness of something bigger than me. Perhaps it is time to look our fear of death in the eye and let it be our Teacher, teaching us how to live. Teaching us that there is no such possession as ME, that there is only US. That we are bound together in a universe that is divinely connected by mystery. That this mystery is requiring of us a more respectful way to Be.
Because, ultimately, this too shall pass.

Musings on the Mind

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Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300

A new normal

A new normal?
It would seem that things are not about to return to “normal” (whatever that was) any time soon. From what I read in the news and between the lines, we are in this for the long haul. One of my most interesting observations to date has been the reaction of people to this new status quo. Kicking, screaming, shouting, crying, moaning, bitching, swearing, more moaning and more bitching. At one point I had to stop engaging, as I could not bear the vitriol, the “hard done by-ness” of people who in fact were not hard done by at all. For the same token, it has been incredibly rewarding watching the mobilisation of support, positive engagement and outpouring of compassionate support to those who are really hard done by the COVID-10 pandemic.
Of course I cannot help drawing conclusions and comparisons. I listen to “why can we not play golf? Why can I not visit my children, why can I not go on holiday, why why why?” Talk of infringements of human rights (often misguided) and civil liberties abound. We have become an angry bunch of whining and winching individuals, as we sip away at our contraband wine. Somewhere deep inside me I get a feeling of “lekkerkry”. I know that none of us can actually contemplate our own ageing, but mabe, just maybe, COVID-19 is bearing the gift of downward compensation. Perhaps, just maybe, in a brief moment of insight and self-reflection, we will have a glimpse of what it must be like to be old, dependent, and perhaps living with dementia.
I know this is the last thing anyone wants to hear or think about at this point. We have more pressing issues to contend with. But, in all of the frenzy there is perhaps the most significant gift, forcing us to become quiet, to contemplate, and to reflect. To look further than our own reality, to see the type of person we will be one day when we are no longer fully in control of everything in our environment. Perhaps we can look in the mirror now and see the type of older person we will be when we truly have no control over something as mundane as our own bladder, let alone our cognitive abilities.
I believe that life up to 60 or 70 is simply a rehearsal. It is our opportunity to train for what is supposed to be the best time of our lives. Wellbeing and “the good life” does not happen by chance, it is the result of a long-term investment, the dividends that will pay off in our 60 to 80/90 years of Being. It is the investment of good friends, good health, eating habits, exercise, exploring hobbies and interests and so forth. These are the investments that pay off in the later years of our lives. And of course kindness. Kindness is the compost that we dig deep into the soil, the nurturing of friendships through kindness, the kindness to our own bodies, to those that will pay off dividends with their visits when we can no longer drive our own cars or use public transportation. The friends (and their children in my case) who will bring us our favourite food or drinks when we can no longer go shopping, who will share our silly and simple pleasures with us when we can no longer go to the bottle store, who will listen to our stories even though they have heard them a thousand times.
All our talk of agency and power and citizenship and rights will mean nothing when we get to a point where we can no longer use the toilet on our own, dress ourselves or make our favourite sandwich, much less so when this is due to cognitive decline. If we are out of sorts now because of COVID-19, imagine how out of sorts we will be when we do not understand what is happening around us, when we are told what to do by people who truly only do their job to keep us safe, when we are locked up with other people whom we don’t know, don’t care to be with and absolutely do not like.
Maybe we should take a long and hard look at the older people in our lives – I know that the ones in my life are teaching me about gratitude, patience, tolerance and forgiveness. I chat to Tannie Hermien who has now been in her little flat, locked up, for weeks. There is no anger, no vitriol, no hatred. Instead, the conversation is an inspiration to me. Maybe it comes with age. Maybe it comes with investment.
I am deeply aware of the fact that mental health issues are very real during this time. People are truly suffering, and I am not making light of this. I am however also aware that COVID-19 is shining a very bright light into the dark corners of our Selves, giving us the opportunity to look at our long-term investment. If COVID-19 is freaking you out, I suggest you better start thinking of how being old and perhaps living with dementia is going to freak you out…it is not too late to change your Mind.

COVID-19 Dementia Ageism Virus Person Agency….

COVID-19 Dementia Ageism Virus Person Agency….
Navigating the space between precautionary measures to protect older people and their right to live a life of autonomy is not easy. It shines a blinding light on our inherent ageist default mode – that older people, like an endangered species, should be protected at all costs, losing sight of the fact that people over 65 are the biggest growing sector of the population globally. Like with an archive or a herbarium or museum, we want to “preserve” them, not noticing that we might actually be killing them in the process…
“Yes, this virus is a killer” we are told by the so-called experts. (Is it just me, or do we suddenly find a virologist or epidemiologist around every corner?) “Lockdown” becomes the only option, like stuffing people into glass preserving jars, tightly closing the lid to make sure they are kept safe. Safe, but another form of dead. The dead of detached, the umbilical cord of life giving hugs and visits and socialising being snipped off by the fear of the virus.
What is the answer? Is there an answer? I certainly do not have one. All I know is that we cannot go on living our lives without being connected. It is killing us, and especially older people, through a long, slow deterioration of the Soul. We are validated through our social connectedness, we feel through being hugged, being seen, being heard. Touch is an essential life force.
People living with dementia are intuitively more sensitive to environmental factors. (There is ample evidence of this.) We may think that we can hide something from them – it never works. Whilst they might not be able to react to the knowing, it has an impact on them. Environmental stressors like too much noise, people fighting, bad smells, even the stress of an underlying emotion are picked up by people living with dementia. It might affect them in ways that we never think of – loss of appetite, suppressed emotions, withdrawal, increased irritability, mood swings and many more. These are NOT the symptoms of dementia, but the very real reactions to a world that is affecting them in ways that they find difficult to deal with.
It is no use that we pretend that “nothing is the matter”. Most people living with dementia are acutely attuned to their environment. The more we pretend, the more they will not trust us. Be honest, be open, talk about what is going on. We cannot “protect” people from Life. We owe them the courtesy of knowing. It is incredibly patronising to withhold Life from people as if they do not have the right to know, or the ability to comprehend. By doing this we take away agency and citizenship.
We are all in this together, all of us. And if it looks as if the person living with dementia does not understand, look again. We would have done the right thing, as with any other person, to inform. That should be the baseline point of departure. From there, we can navigate the road ahead, unchartered as it may be…
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 <> <>


The gift of dementia.
Yesterday I spoke to my friend whose husband is living with dementia. Lockdown has not been easy, but she has done everything possible (and impossible) to protect him from COVID-19. A sudden urinary tract infection did not help, nor did the impending doom of possibly running out of wine and having to go for x-rays.
Whilst helping him with his morning bathroom routine, he takes his hand and gently strokes her hair, saying “I love you.” The gentleness, vulnerability and uninhibited affection hits hard. More than thirty years of marriage – a good marriage – but never has he shown affection so unguarded.
Can it be that there are indeed gifts in this journey? I do believe so. We spend our lives building up defences. And then dementia breaks them down. IF we are in a loving relationship, surrounded by the things and the people who we love and who love us, our true Self starts shining through more and more. We become, we grow, I do believe that we actually evolve when we no longer resist being who we really are.
I can see the same thing happening with my Mother. She now has no problem saying things like “I love you”. Those words never came easy before. She has become gentler and more grateful. I thought that she would find it difficult to adapt after my Father’s death. Yet, she is content, telling me constantly that she has nothing to complain about.
We need to look at dementia not as a monster disease that eats away at our Selves, but a different way of Being in the world. We also need to see that people living with dementia should not be institutionalised.

Our teachers.

Probably the most important thing that people living with dementia teach us is to be in the moment. While we spend hours and hours on meditation and mindfulness courses, they have perfected the art of Being. Just Being…
What is the most difficult thing for most of us at the moment in this COVID-19 pandemic? Do Be still, in the moment. I have practised the art of Being in the moment for the better part of my 54 years in this lifetime. Yet, I fail miserably. The internal dialogue churns away like a stuck record, if I am not hungry, I need a cup of tea, or I check my phone – scrolling between facebook and instagram and whatsapp and linkedin and back to facebook. Yes this is an extraordinary time, yet what better time for us to become quiet? Yet, we flit around like the butterflies in a garden full of tempting colours.
Is this perhaps why so many people find it so hard to Be with someone living with dementia? Is this why we always want to reminisce with them and forever try our best to make them remember things from their past? I see this with my mother, who is so content to Be in the moment with her dog, her television programs, her garden, looking over the sea. She has no need to think back all the time, nor to worry about the future. She has perfected the art – thanks to her memory loss – of Being in the moment. And it makes her so happy to not have to stress about anything outside of the now. She delights in our phone calls, in the weather, in what is happening in the soapies on tv, in the meals they have and the new growth in her garden. Is this not the ultimate state of bliss that so many of us yearn for?
In this peculiar time that we are now facing, perhaps we will begin to see the gift that people living with dementia is offering us. The gift of Being in the now. And perhaps we will take more time to Be with those living with dementia, not get frustrated with the fact that they cannot remember the past, or have no interest in the future. Perhaps we can learn from them about being Present, truly Being with them without any distraction. It will stand us in good stead to learn this…
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 <> <>

Dementia in lockdown

There has been a lot of talk about how people living with dementia will cope with COVID-19. When we think about it, let’s ask ourselves “what will change for them?” Considering life in the average Care Home for a person living with dementia, how often do they go on outings? How often do they get to walk to the shops, go and buy an ice cream, have a glass (or two) of wine? How often do they get to decide, on the spur of the moment, to go and visit a family member? Let’s face it, most people living with dementia are in a continuous state of lockdown, either literally, figuratively or both.
We have become so used to the living arrangements that have become the status quo and accepted norm for those living with dementia. Up at 04h00, sitting in the lounge, breakfast, lunch, supper, teatime, bedtime. Maybe a bit of singing here and some colouring there, one day floating into the next. Tuesdays Bingo, Sunday church.
So many of us are going through a tough time at the moment. We know this is temporary. We are not confused or forgetful. We are mostly in our homes, we can determine our own pace and do our own thing. We can read, write, cook, play with the dogs, sit in the garden. And yet, we mostly feel completely overwhelmed, anxious, depressed, helpless. ALL. THE. TIME. We wake up at odd hours of the night, we are grumpy, irritable, weepy. Aggressive. Snappy. I find that I wander up and down the garden. I go from the couch to my desk, then before I know it, I am lying on my bed at 11h00, having a nap.
For those working in Aged Care and with people living with dementia, does the above sound like most of your residents? If you took them to the doctor and described these behaviours, I can guarantee you that, without hesitation, the diagnosis would be “behavioural and psychological symptoms of dementia.” Done. Dusted. Medicate. Whilst many specialists would note that “non-pharmacological interventions” should be the first port of call, the offerings are mostly patronising and often elicit more distressed reactions.
Very few of the above mentioned reactions are directly related to the cognitive impairment of the person living with dementia. They are often the result of frustration as a result of being locked in, restrained and bored. The feelings of having no agency, of not having much choice, etc. I think you get the message, as this is exactly what many of us are experiencing at the moment.
Will COVID-19 bring us to a point where we can actually begin to see what the impact of a “lockdown” is? Will we begin to see how our well meaning approach to institutional care can be so detrimental to the wellbeing of the most vulnerable people in our society? How taking away agency and freedom and choice can lead to reactions that in turn lead to a further decline into a lifelong prison sentence?
Let us open our eyes and ears and hearts and minds to see and hear and feel and think differently, now that we have experienced the horridness of a loss of agency. For those of you who manage to do all the gardening you ever wanted to do, learning new skills, catching up on the backlog of filing and writing and learning new skills during this period, I salute you. For the rest of you feeling as down and unproductive as I am, let’s talk about the plight of people living with dementia…and take your pick of which of the “non-pharmacological interventions” listed below you think would choose to make you feel better right now..
Table 2. Non-pharmacological management strategies General principles • Provide a ‘dementia-safe’ and friendly environment • Maintain a set routine • Avoid over-stimulation • Psychoeducation for family/caregivers • Adequate training for caregivers • Reminders and repetition of information • Orientation with clocks, calendars, newspapers • Regular social interaction and activity Behavioural • Regular exercise • Wandering paths (secure) Psychosocial interventions • Reminiscence therapy • Validation therapy • Resolution therapy • Pet therapy • Respite care to relieve caregiver burden • Supportive counselling for family members, e.g. dementia support groups 1) Management of behavioural and psychological symptoms of dementia With the steady rise in numbers of the world’s elderly population, the behavioural and psychological symptoms of dementia (BPSD) have become increasingly relevant to both clinicians and families. Carla Patricia Freeman, MB ChB, FCPsych (SA) Department of Psychiatry and Mental Health, University of Cape Town Carla Freeman is a psychiatrist currently sub-specialising in the field of neuropsychiatry at the Department of Psychiatry and Mental Health, University of Cape Town. Her areas of interest include substance abuse in the context of HIV infection and old-age psychiatry. John Joska, FCPsych (SA), PhD Associate Professor and Head of Division of Neuropsychiatry, Department of Psychiatry and Mental Health, University of Cape Town John Joska is programme manager for HIV psychiatry and Cape Town Metro West old-age psychiatry.

Being vs Doing

Being vs Doing. In many Care Homes there seems to be an obsession with “doing” – creating an environment where people are kept busy and entertained and cajoled from the morning to the evening. Apart from the fact that there is no evidence that this has much positive results, I often feel for people who are not able to escape.
Activities are important, I do not argue with that. However – how many activities do we perform outside of our daily routines? I do ceramics once a week – that is my activity. I often wonder if we do these activities for our own sake or for the sake of the Elders… Is it our way of keeping ourselves busy? Or maybe a way of making the time pass….?
As emphasized in yesterday’s post, just BEING with someone who is forgetful (or sick, vulnerable, old) is the biggest gift that you can give. For being with someone is validating that their presence counts, that you do not have to make things or do things to connect.
So many Caregivers are not allowed to just sit with an Elder – in fact many are being watched on cameras to make sure that they are “working”. It is impossible to always be busy doing things with people living with dementia. So many end up in front of a television…
Being fully present with someone who is living with a different reality means that you honour THEIR reality, you will respect THEIR space/thoughts/feelings and meet them where they are at, with your full being.
This is something I am beginning to understand more and more within myself – to actually BE with myself. I practice being alone, quiet, still. I would not call it meditating, never have been good at that. But just simply being – staring at the waves crashing on the beach, watching the clouds passing above, the little sugarbirds drinking from the red water that I put in the garden for them. And maybe one day when I start to forget I will have perfected the art of being.
The biggest gift then will be to be alone in nature. Do not try and cajole me into doing anything. Music maybe – Liszt to cheer me up, Schumann to calm me down. I will be happy to sit and look out the window. And to be in the presence of kindness. That will be enough for me.