Labels

The new DSM 5 (Diagnostic and Statistical Manual of Mental Disorders) ensures that there is a diagnosis for every possible aspect of human (mis)behaviour. There seems to be a “gold standard” of what would be considered “normal”, and the rest of us are truly certifiable. Or certified.
Whilst it is really good that we have a vocabulary for all the millions of variations of being-in-the-world (introvert, extrovert, non-binary etc etc), we have also created a litany of labels for human behaviours and articulations that makes one wonder who of us is not “sick”…
People living with different abilities (and let’s be mindful of ableism) or people living with dementia are often prime targets of our diagnostic labels. In my opinion, people use these labels to hide their inability to understand or really see the person behind the behaviour. As I have often mentioned, every action is a reaction. When we find ways of expressing ourselves difficult, we react. All of us do – I run away from noise, conflict, uncertainty. I am (extremely) grumpy when I am in pain. I get (extremely) irritated when I am tired. I sulk when I am forced to do things that I do not like doing. Whilst we can be clever about our internal locus of control and mindfulness, we react, as much as we profess that we respond.
People living with dementia are almost always on high alert – except for the millions who are drugged or chemically restrained. Like people who are deaf or blind develop highly attuned other senses, people living with dementia have highly developed and sophisticated sensory perception. Smells, tastes, sounds, and of course feelings are almost always on high alert. And they respond to these in ways that are not always clear to us. Here is where we have to become ethnographers – trying to get to the message behind the behaviour, remembering that a lot of the response comes from a place of feeling insecure.
When things change in the world of someone living with dementia it could elicit a response that does not necessarily correspond directly with the stimulus. It might be that the response comes a lot later once the person has filtered the information. And of course the response may seem to have no correlation with the stimulus. The important message is that the person is trying to tell us something, or at least that they are responding to something that they think or feel.
The minute we label this response, we disconnect the person from their being-in-the-world and run the risk of eroding their agency.l, even more so when we attribute all behaviour to “the dementia” or “they are now at that stage”. Of course this is not an easy or simple course of communication. Sometimes we simply do not know what is happening in the lived world of other people, how much more so when that person’s responses are a riddle to us…
So – what is the upshot? Don’t label (he is paranoid). Don’t try to fix (maybe we should hide these objects). Accept (I see you put the flashlight in the fridge). Validate (I can see that you are upset). Be honest (I don’t know how I can help you right now). Take the blame on yourself (I am confused/scared/uncertain). Affirm (we will figure this out together. For now I need a drink…)

Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 Rayne.Stroebel@mindsmatter.co.za www.mindsmatter.co.za

In(ter)dependence

It is interesting to come to a realisation that one has been wrong about something for a very long time – and then having to reframe one’s thinking. It is uncomfortable, to say the least.
For most of my life working in aged care I have equated quality of life with independence. I firmly believed that it is the defining attribute that all older people should strive for. Not only independence in activities of daily living, but independence from needing other people. I was wrong. The more I explored the lived reality of people in Hangberg, the more I noticed that they did not have this obsession with so-called “successful” ageing, which meant that they can live alone and not need other people. Their being-in-the-world is all about inTERdependence, a connectedness to an ecosystem of family and community. They do not build high walls, children do not move out of their parent’s home as soon as they can. If they do, it is almost a given that the grandchildren will move in with the grandparents. There is a cohesion, as precarious as that might seem. And no “old age homes”.
For many years, if I was asked if I would recommend parents moving in with their children, I would shout a big NO! An absolute NO! There is a possibility that I was wrong. A new field of study looks at socioecology and the importance of community interdependencies. It is within these (often) informal community structures that there is an expression of agency. Whilst we look at the precarious nature of so-called “poorer” communities, we miss one of the most critical elements – agency.
I spoke to grandmothers in the Hangberg community who – if measured by any hegemonic measure – would be considered trapped in a precarious cycle of poverty, living in crowded homes, are illiterate and without much potential for a “better” life. Yet, every single one of them story their elderliness as one of great privilege and immeasurable grace. They see themselves as blessed, because they not only have agency, but a purpose. They hold together a family lineage which rises above the perceived restrictions of their past (Apartheid), their “deficits” (not being able to finish school) and their present circumstances which (again perceived from the outside) might look precarious to say the least. It is within this precarity that a tension is created. And it is this tension that holds together not only the makeshift homes that can withstand the worst of the Cape Southeaster, but also holds together a different being-in-the-world. A community.
Our ageist social norms of older people as passive recipients of care, as being a grey tsunami or a care burden on the world economy is a western social construct that needs serious attention and rethinking. Older people are indeed the most valuable assets to and of communities. They hold the values*, give physical comfort, contribute to social integration, to name but a few of these attributes. This capabilities approach shines a completely different light on ageing and the role of older people in society. To relegate older people to “old age homes” is not only detrimental to the formation of healthy communities, it is shutting down a life force that feeds the growth of society as a whole. Older people do not need our protection – something that I have fought against for many years. They need inclusion. We need to shift our focus towards creating a society where old and young, together, form an interdependent cohesive community. Older people will age differently, we will see less of the “tragic” and more of the “magic” of ageing. And we will learn “to change our minds about people whose minds have changed” (Dr. Allen Power, “Dementia beyond drugs”).
If we can restructure our communities – and COVID-19 might just force us to do this – we might start seeing older people as our teachers of the lessons this world so badly needs: patience, forgiveness, resilience, wisdom and many more attributes that our capitalist society somehow no longer values. Older people can heal our broken world. They will teach us again about genuine human caring and presence.
* “‘It gives you a reason to be in this world’: the interdependency of communities, environments and social justice for quality of life in older people” (Robertson, Gibson, Greasly-Adams, McCall, Gibson, Mason-Duff and Pengelly, 2020).
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>

Vulnerability

Vulnerability
I have often written about vulnerability in the past. Every year at this time it comes to the surface again. I see how older people battle with the expectations we have of how we think this time of year should be celebrated. Surrounded by children of all ages, braais, late nights and heavy, rich meals. And of course wine and beer and lots of cakes and biscuits with teatime.
I am now 55. Over the past few years I have been acutely aware of how my body has changed. I can no longer eat red meat and drink red wine at night – one of my biggest pleasures in life! As for coffee, since I turned 45 I cannot drink coffee after 18h00 in the evening. Lately, if I drink tea at night, I have to get up and go for a pee up to three times during the night. I have aches and pains where I did not think it was possible to have aches and pains. I gain weight walking past the fridge, and battle for weeks to lose a few kilos.
Thing is, we change as we grow older. Our bodies change, our digestive systems change, our sleeping patterns change. But most of all, our minds change. If – and this is a BIG IF – we really pay attention to our Selves, we will notice the changes on many different levels. As we grow older, we become more aware of our attunement (or not) with the outside world. Our bodies slow down, start rejecting certain foods and practices and habits, for a good reason. We are not supposed to run as fast as a 20 year old, eat as much or look like them. Our entire system starts to change, and unless we accept these changes we will go into a constant battle with our bodies and our Minds.
Very few people seem to be able to gracefully accept the ageing process. Thanks to our brainwashing by the media, we believe that we have to fight ageing with all our power. Botox and tummy tucks, boob jobs and dyeing our hair will keep us “young”, while everything in our bodies are kicking and screaming. I am not saying that we should “let go”, trust me. We need to work harder on staying fit, but we also need to listen to our bodies. We are Divinely guided to another place, another state of being-in-the-world, one of introspection and contemplation. This is the phase in our lives where we grow more than ever, as things are not always easy…
As we grow older, we become slower. We start to worry, we become insecure. After 60 the world thinks we are all stupid and redundant. We take this on board and start beating ourselves up, feeling like we are a nuisance to our loved ones, that we no longer matter. As much as we try to assert ourselves, we simply feel that there is not much point. Yet, I believe that this is the most magical stage of our lives. This is the time to slow down, to look inward, to grow towards a higher state of consciousness. There is a reason for us to slow down, to change our ways, to become more in tune with ourselves and the world around us. We are an intricate part of a mystical ecosystem, we are the expression of Consciousness itself. We can now step out of the rat race and create our own world of creativity and contemplation.
The more we kick against this, the more it will feel as if we are not supposed to be here. Again, the changes that we are experiencing are not easy. It will take hard work to sit back and accept the slowing down. If we are honest with ourselves and really look at ourselves in the mirror every day, it will start happening. Spending time in nature, surrounding yourself with good friends and people who truly love you will bring that acceptance. And then the magic will happen. New neurological pathways will bring new insights, a sense of grateful acceptance, and contentment. Stop fighting. Stop trying to defy Nature. Open your heart and your Mind to the flow of Life. It is perfect just the way it is. If your wonky knees allow you, go and sit in a meadow and look at every little flower and blade of grass. Contemplate the magnificence of it all. Take a pencil and a piece of paper and try to draw these delicate gifts of nature. Photograph them. Be still. This is the best time of our lives.
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>

Consciousness

For those of you who have missed the conversations with Prof. Felicity Edwards (posted to Facebook), make sure that you listen!
fb.watch/2NR8JJoAJR/ <fb.watch/2NR8JJoAJR/>
fb.watch/2NRdnL4eyR/ <fb.watch/2NRdnL4eyR/>
fb.watch/2NR7Ls6JS1/ <fb.watch/2NR7Ls6JS1/>
Felicity is Emeritus professor of Divinity, Rhodes University.
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>

This festive season

This “festive” season was certainly not as festive as we usually know it. There seems to be a veil of uncertainty and fear suspended over all our usual frivolity. And as per usual, I got a few telephone calls of panicked children who suddenly realise that their older parents are no longer coping. And the inevitable fear of dementia…
Dementia is very real, and I am not denying the impact that it has on the lives of those living with it or their families. Yet, it must never be our first port of call. A visit to a psychiatrist who administers the Mini Mental State Examination is NOT the route to take. I have written extensively about dementia being a diagnosis by exclusion in previous blogs. I cannot emphasise this enough. Go and read these at my blog. <mindsmatter.co.za/> The COVID-19 reality is that many older people have become extremely isolated, their usual routines of visiting friends and family, playing bridge and socialising disrupted. Social isolation often leads to depression, a lack of motivation to get up, get dressed, and put on the brace face for the world. I have heard of many people telling me that their older relatives’ speech has deteriorated. This happens when people stop socialising…if you don’t use it, you lose it.
We all seem to be suspended in this precarious position of wanting to protect our older parents. In the process, we often do more harm than good. Whilst we might worry about their safety and wellbeing, it never works when we reverse the parent/child role. In fact, it causes chaos and resentment, and often totally out of character behaviour. Our parents are our parents – whether we are 10 or 55. That is their role, and they will never stop playing that role. We can advise, support and suggest, but the minute we take over control we run the risk of completely disempowering them. And we start causing havoc between siblings. Yes we know best – or do we?
Every human being has the desire to be significant. For many older people, this significance often starts fading when they enter the ageist, nebulous world of old age. They simply do not enjoy the status or standing in a world that is so focussed on productivity. Old patterns fuelled by unresolved issues seem to come galloping out of the closet as we age. Our insecurities are magnified and multiply in our sleepless nights. This is when the desperate clawing back to some sense of control is noticed – those really nasty remarks about our drinking/smoking/weight gain or chosen partners that slip out unexpectedly and unguarded. And they hurt like hell. This is often the consequence of feeling vulnerable, wanting to show the world that one can still make and have an impact.
What to do?
Validate: “I can see that this is hard for you. How can we assist you to stay as independent as long as possible?” Make yourself vulnerable: “Mom, this is difficult for me. I have no idea what I have to do to support you.” Reassure: “I am worried about you being alone, but please know that I am always there if you need me.” Build in support systems: Install a call system that is easy to use and linked to a response team, like Telecare Solutions <www.telecaresolutions.co.za/>.
Try and listen like you would listen to one of your clients, and not like you are listening to your Mom/Dad. Often it is much easier to let someone who is not a family member have this conversation, as we get caught in the emotional trap, have our buttons pushed and react instead of respond.
This time of year is notorious for family fights. Everyone is exhausted, and with COVID-19 we have a major existential crisis staring us in the face. We do not have the answers, but we can be kind. Very, very kind. Listen. Reassure. And be more kind.
For help or advice, send me an email at rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> Have a blessed 2021.

Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>