Navigating the world part one

Sitting at Medi-Clinic waiting for an ultrasound (nothing serious) I am aware again of how frightening it must be for an older person, let alone someone with a disability or memory loss, to have to visit a hospital. It starts with finding parking – the best spots, close to the entrance are reserved for the doctors and hospital staff. (They come in in the morning, park and go home in the afternoon, not?) The parking spaces are squeezed in so tight next to each other that it is impossible to open the door fully.

Once you get into the hospital, finding your way can be a nightmare. In and out of lifts, long passages that all look the same. And then, when you eventually get to your destination, you have to inevitable fill out a form. These forms are all the same – the font is small, and the space to fill in your ID number or email address never big enough. (If you are a Virgo like me, you like to do these things very neatly…)

I watch a person who is not very tall trying to see over the counter, where seven people are sitting behind computers, all talking on telephones attached to their heads. I am battling to hear the person trying to speak to me above the din of voices. All of this before I actually had my ultra-sound.

Imagine being old, confused and forgetful at this point. I cannot imagine that major hospital groups, who I assume have about 60% of their patients over the age of 80 years, have not made any effort to be more age friendly. And not just to older people, the same goes for children! The kids waiting with their Moms for ultrasound are climbing the walls – how about a play corner?

I cannot imagine the trauma for an older person to now be admitted and go through the next round of torture with forms, questions, more walking through grey corridors, more noise, more confusion.

It is time, hospitals, it is time. Wake up an become more person centred. It is time!

Navigating the world.

London, UK.

I am always so aware of how much more visible older people are in Europe. Not only is it much safer for them to be outside than in South Africa, but everything is so much more accessible thanks to amongst other things public transport systems.

Standing in central London this morning, I watch a man crossing the road using two walking sticks. He looks very old, and in pain. Just getting off the pavement negotiating the two walking and a shopping bag takes so much time that the light turns red. Standing in the street now, my heart stops as cars and bikes whizz past his feet. When the light turns green again, he starts the slowest, most painful journey across Charing Cross Road. I stare at him, feeling totally fixated by the need to rush over to help him. No amount of help will however make him walk faster – he is going at top speed.

The world rushes past. People on their cellphones, others chatting to friends, yet others staring ahead of them as only the London public can do, not noticing anything at all. Three quarters of the way across the light turns red again. Within seconds horns start blasting from those in line who cannot see the man trying to get to the other side. Just as I regain a sense of myself needing to do something to help, a young girl steps in front of the cars and helps him to the other side. Cars rush, people walk, life goes at its hectic pace. The man is now at the curb. It takes even more effort to get on to the pavement. Thank God for a lamppost against which he can prop himself up.

A whole host of feelings crept over me. I was so aware of how the world just did not see this man, how everything moves at such a fast pace and how some people are just left behind. If this had to be a daily routine of perhaps buying groceries, I cannot see him coping alone. I was aware of the vulnerability, his frailty and his stoic fight for independence. And I was aware of how the world is just not designed for people who are not fast in every aspect of their lives. But most of all, I was aware of how we are all on our way there. (I was exhausted after a long flight and had a sore back…).

For the rest of the journey I watched how young people jump on and off the train, how they negotiate electronics, carry heavy backpacks and handbags which they effortlessly fling onto the luggage rack. There are special seats for people who need assistance on the train – the question remains how do you actually get to the train!

I looked at this man, and wondered at what point will he give up trying. In her book “Spertyd”, Elsa Joubert tells how she had to give up one thing after another, mostly things that we all take for granted. Driving her car, travelling by train or plane, going on holiday with her children, going to her hairdresser in town. This man will not be able to negotiate London for much longer. I wonder how this must feel. Who will do his shopping….? I walk down the more than 100 stairs at Covent Garden, filled with a sadness that sits in my throat as I think of one of my favourite songs…

Have you seen the old man

In the closed down market

Kicking up the papers

With his worn out shoes?

In his eyes, you see no pride

Hands held loosely at his side

Yesterday’s paper

Telling yesterday’s news

So, how can you tell me you’re lonely

And say for you that the sun don’t shine?

Let me take you by the hand and lead you through the streets of London

I’ll show you something to make you change your mind

Have you seen the old girl

Who walks the streets of London

Dirt in her hair

And her clothes in rags?

She’s no time for talking

She just keeps right on walking

Carrying her home

In two carrier bags

So, how can you tell me you’re lonely

And say for you that the sun don’t shine?

Let me take you by the hand and lead you through the streets of London

I’ll show you something to make you change your mind

And in the all night cafe

At a quarter past eleven

Same old man

Sitting there on his own

Looking over the world

Over the rim of his tea cup

Each tea lasts an hour

And he wanders home alone

So, how can you tell me you’re lonely?

Don’t say for you that the sun don’t shine

Let me take you by the hand and lead you through the streets of London

I’ll show you something to make you change your mind

Have you seen the old man

Outside the seaman’s mission

Memory fading with

The medal ribbons that he wears?

In our winter city

The rain cries a little pity

For one more forgotten hero

And a world that doesn’t care

So, how can you tell me you’re lonely

And say for you that the sun don’t shine?

Let me take you by the hand and lead you through the streets of London

I’ll show you something to make you change your mind

Ralph McTell

Silence is golden.

So I have spent the last two nights in a student “Res” on Stirling campus in Scotland. I have long forgotten my undergrad student days, boarding school days and sharing a dorm with 35 men during national service. I have not forgotten my intolerance with inconsiderate people who speak at the top of their voices and slam doors whilst others want to sleep… Thanks to extreme safety measures, there are fire doors just about every five meters in this building, all of which slam with a bang when someone does not know how to properly close a door. At 01h00 in the morning…

Of course I could not help to imagine what it must be like if you cannot escape this. If you are helpless and at the mercy of others, not being able to get up and shout at someone for banging the same door for the hundreth time whilst trying to sleep.

Imagine being in a “frail care”, not being able to speak, living in bed, fully conscious. The intercom system screaming “NURSE SMITH, COME TO THE OFFICE PLEASE, NURSE SMITH!” Unexpected, loud, suddenly. Staff talking at the top of their voices, trolleys rattling, someone else’s radio blaring terrible music. (My neighbours in Res were playing music that sounded like an oriental opera…). A television on “Noot vir noot” (I cannot for stand the sound of Johan Stemmet’s voice!) I would go insane…

The brain, in fact for me – the soul – needs silence. Absolute silence. To reboot, to rest, to recalculate. In so many Care Home settings people feel the need to constantly have piped music – Andre Rieu and Kenny G will definitely drive me to drinking the cleaning chemicals. Why do so many human beings feel the need to constantly make a noise, albeit the noise of their own voice, the ringtone of a cellphone, humming, singing, nattering?

Someone in a Retirement Village in KZN once told me that the only place in the home where she can have some form of silence is on the toilet. That is where she reads her bible and say her prayers.

We have to consider the impact of the environment on wellbeing. Some (strange) people can cut out noise and be still. Many people cannot do that – every noise is an intrusion into their brain, into their Being. It is almost as bad as not ever getting restorative sleep – your brain simply never rests. For a brain that is already challenged with atrophy of some sorts, this must be HELL. Pure, unadulterated HELL.

Yes, I love music. I love to listen to music when I feel like it. I love to listen to the music that I like, which is very specific. I like to chat, when I feel like it, and with people who I like and choose to chat to.

The past two nights I realised again that people do not “suffer” from being old, frail, or living with neurocognitive impairment. They do SUFFER from being in a world that is not aware, a world that is focused on DOING, rather than on BEING. A world where silence is not golden, it is gone! And that if I ever, God forbid, end up in a Care Home having to share my space with others who are loud and inconsiderate, well I will go bloody crazy. No-one will hold me accountable for what I get up to, I promise. Be warned.

“True silence is the rest of the brain, and is to the spirit what sleep is to the body, nourishment and refreshment”.

REmentia

Rementia (yes, as opposed to dementia) is not a new concept. It goes from the understanding that people living with neurocognitive impairment can learn new things through the neuroplasticity of the brain. In simple terms, the brain can and will create new neurological pathways as long as it is stimulated. Atrophy of the brain, in whatever disease, is usually only partial, and in microscopically small areas of the brain. This will affect function, as per that particular area of the brain, leaving the rest of the brain intact.

The sad thing about being a person living with dementia is that whilst only a very small part of the brain is usually affected, the ENTIRE person is affected by the way that they are suddenly treated and labelled after a diagnosis. Very little attention is paid to other abilities, or to growth in any sphere of life, let alone brain development. Even more sad is that a person living with dementia will not respond to rementia unless they are in an environment where there is respect for the ENTIRE being, recognition of who they are (and have been) and TRUST that they are a capable person whose consciousness is not affected.

So often, the minute a diagnosis has been secured, the conversation turns to planning for the downhill race. The person is framed and positioned within the deficit discourse of what they cannot do, rather than building on what they can do, and learning new strategic coping mechanisms. The deficit discourse will rob them of the ability to grow new neurological pathways, as well as of their dignity. When they start feeling less confident and make “mistakes” (not do things the way WE want them to do it), their self image will be eroded, they will withdraw and become less and less willing to take the risks associated with learning.

Our first question after diagnosis should be “how can we help you to grow?” Yes, grow!

Often people will fall into a devastating depression after a diagnosis, which is totally understandable. However, if there is a clear pathway to growth, and the focus is on learning skills and techniques that will enable greater independence, this depression will soon lift. Constructive change can be liberating for the person living with dementia. Take off the cupboard doors so that they can easily see where things are, always leave a light on in the bathroom and the door open, label photographs with names and places (instead of asking “do you still know where this was?” or “who is that in the photograph – do you remember?”).

There are so many ways to create a supportive environment that will restore confidence and encourage autonomy. It all starts with the way in which we frame the narrative. It is not difficult to do, simply be mindful that every word and gesture are aimed at empowering, and not at DEmentia. REmentia says “I can learn new things, I am a capable person with new and different needs, I can grow, I can flourish.” Try it.

(Feel free to contact me via messenger for a consultation.)

It takes two to tango…

Often when watching someone living with memory loss I wonder what goes through their minds when they are just sitting there, staring into space. Maybe with the advancement of artificial intelligence thoughts might be translated into words of pictures someday. 
I have seen people being very uncomfortable when they are left alone, with expressions of severe distress and anxiety. It is then clear that their thoughts must be disturbing or distressing them. 
In my direct work with people living with memory loss I have always been so aware of the impact that their environment has on them, and how it can soothe and calm, or distract and distress. The bigger question is however what we do with those expressions of distress…
Noami Feil is the author of “Validation Therapy”. The best way to describe this approach it so allow the person living with memory loss to steer and guide us – like taking the lead in an intimate tango. Being fully centred and present, lightly moving with the person, taking the que from their body languages. Be fast if they want to be fast, slow down when they do. But mostly, again, be fully present. Always make deep eye contact, sincerely. 
I have often thought that persons living with memory loss can read our minds, feel our thoughts. They know when we lie to them, even though they cannot communicate their knowing with us. If we truly honour the sacredness of the human spirit in every person whom we encounter who lives with dementia, they will respond to this in a positive manner.
As an afterthought – some people are truly horrible human beings. When they develop dementia is does not mean that they will now become wonderful human beings – on the contrary, they might even become more horrible. I have no advice for how to engage with them…

Bear hugs.

Our response, our gaze, our being with a person living with dementia can affirm or negate their personhood, status, autonomy, being-in-the-world. What goes on in our minds when we engage with a person living with forgetfulness will determine the interaction. Not only do people living with different abilities become super sensitive and alert to the way that the world sees them, they also hide away from negative interactions, or blatantly react to them. (The bath-time rituals that so many of us have witnessed that end up in a screaming, hollering fight.) 
The physical body and the way that it is positioned/placed/affirmed plays a major role in wellbeing. When the body is aching or cold, one can physically see a person cringing or going into a foetal position, drawing inward. When they are not able to verbally communicate their aches, pains or discomfort, it often shows in facial expressions or body language. This sight is familiar to many of us, seeing Elders sitting hunched, their legs crossed, arms folded, heads bowed and shoulders slouched. The entire body is showing a need to be protected. 
In all my years of working with people living with dementia, I have once only been told “do not touch me”. When I visited a “frail care” on Wednesday, I noticed again how Elders living there reached out to me. The minute I make eye contact, really look them in the eye and engage with my whole being, they will open up, a hand would reach for mine, and the ice would melt.
Physical touch is one of the most powerful ways of affirming a person. Not the touch of wiping a mouth, changing incontinence wear or washing a body (although these can be incredibly affirming as well, but seldom is.) 
I am a big bear hugger – full body, not just shoulders touching and pushing away after a second. A full body, every part of it, embracing, holding. A hug is useless if it lasts less than 20 seconds. And what is so magic is when you can feel the hugged starting to melt…. At Huis Ina Rens in Paarl (a small home for people living with forgetfulness) some of the ladies came straight into my embrace when I arrived, holding on for dear life, sharing the warmth and energy of my being with them, right up against them, with them, becoming one person for a moment. 
Many years ago I watched a BBC program (Anneke Rice was the presenter) of a group of experts going to Romania to help upgrade an orphanage. The manager told the cameramen that they had more and more cot deaths. After much investigation, they realised that it was the babies who were not being held on a daily basis that actually just died… When they got in more volunteers to hold the babies, the number of deaths plummeted. 
The same goes for older and vulnerable people. When they are not being held in a meaningful, present, warm, embracing way, they will wither away, becoming living dead people. We ALL need to be held, daily. Some perhaps more emotionally or intellectually, but when your world has become so small, being held physically is essential. It affirms your presence, your aliveness, your physical connectedness. It grounds you, makes you feel secure, as much for the giver as for the receiver. Take the time to hold the person, you will affirm their Being in more ways that you can imagine.

“They all have dementia!”

The loss of power when being diagnosed with dementia is a very real and terrifying event for most people. Suddenly you are no longer in charge of your own body – it now has a status that you cannot know or control. It is like being invaded by an alien force, never knowing what is going to happen next. The complexity of medical knowledge becomes the sole propriety of experts and specialists, rendering the intuitive being of one’s own body of little regard. The more sophisticated the research, the more jargon that can be used, the more the individual is usurped into the medical paradigm. This powerful force, whilst providing many forms of relief, can also serve to make slaves of those who do not have the acumen to resist. Most people become completely powerless, hand over their autonomy and become puppets to medication, diagnostic catergorisation and nursing interventions. 
The medical gaze, a term coined by Foucault, becomes so powerful that it takes on an almost religious, God-like power, changing the very essence of our Being, relegating us to the “frail-cares” of society. This externally imposed power and knowledge leaves the average person reeling from shock, feeling almost dehumanised. Add to this the pictures in mainstream and social media of living with dementia, and one could think that you have been possessed by an evil force, leaving you completely powerless.
The stigma of this medicalisation of ageing and a different being-in-the-world creates a dementia discourse entirely focussed on disease, leaving those living with forgetfulness on the outskirts of society, almost as if they are contagious.
Just yesterday I visited another “frail care” where the Health Care Manager tells me “oh everyone here has some form of dementia”. I was intrigued – asking if they only house people who have been diagnosed with the syndrome. “No”, she said, “but you know what it is like, they all have a form of dementia in any case. Lewy Body, Alzheimer’s, you know, some form of dementia”. Walking through the center it broke my heart into a thousand pieces seeing people who are anything but demented, and yet they are seen and treated as such. No agency or autonomy. Lots of ‘activities’ to keep them busy…. When I suggested that the Elders are consulted in the process of selecting fabrics for the new curtains, I could see the total disbelief in her eyes. “They have dementia!” she exclaimed, almost exasperated by my ridiculous suggestion. “We must just bring in bright colours, and also paint the walls in bright colours”. I wanted to weep. Fourty Elders, beautiful human beings, that have been written off, having become a project to be entertained with building blocks, sing-a-longs and crafts. 
After so many years of fighting this system, I want to scream. I want to shake her like a ragdoll until her stuffing falls out. There is NOTHING that I can say that will change her mind – she is the expert. “They” are her objects in need of “care”.

See me…

Ten years ago, it was said that cancer was the biggest fear of older people. It is now dementia (or cognitive impairment). I like to call it forgetfulness. 
Can we take the sting out of this dreaded syndrome? Is it at all possible to not let it erode your dignity and rob you of your personhood? I believe that there is hope…not in more research, but in more and more people “coming out” talking about how it can be different.
Somehow we are trapped in a deficit discourse – I have spoken about this before. What I find interesting is that many people get upset when I suggest a different narrative. It is as if the passionately cling to the idea of horror and suffering and the war metaphors. Are we really hardwired to this kind of dementia pornography, addicted to seeing only the most graphic pictures of distorted faces and crumpled bodies. The media is filled with these images – which has in itself brainwashed us to believe that THAT i dementia.
A few tears ago I attended the “Dementia beyond drugs” training with Dr. Al Power. We were asked to give him an example of a so-called “difficult” resident. Many hands were raised, and Al decided on the example of Mr. G, whom I happened to know quite well. Mr. G lived with dementia, has been in this particular Care Centre for a number of years, and was causing havoc. Big man that he was, the nurses were scared of him. If he grabbed you by the arm, he would easily drag you through the whole centre. Unable to speak, he would hit, shout, and literally run with a poor nurse in tow. When I first met him, I was intrigued. I asked the staff to tell me about him, and all I could get was that he use to live in the village, and that he moved in a few months ago. His wife still lived in the village. He was described as “aggressive and very difficult”. That was about all they knew about him.

Dr. Power presented the “Domains of wellbeing” training – a process of exploring the seven domains of wellbeing. The staff were tasked with going back to their Care Centre, and build a map of the seven domains of wellbeing of Mr. G. Armed with a big poster, coloured pens and magazines for pictures, they set off trying to find what constitutes the domains of wellbeing for Mr. G. What would his sense of identity be, where would he find meaning, joy, connectedness? What makes him feel secure? What autonomy does he have? And what are the areas of growth for him? With the help of his wife, the built a map of wellbeing.
A fascinating thing happened – without any change in his routine or changing the way in which he was treated, Mr. G’s behaviour almost immediately started changing. He was less agitated, walked slower, did not hit and punch or lash out at staff. We were all astounded, and I wrote to tell Al Power this story. It felt like a miracle happened!
What was this about? Simple! The staff started seeing Mr. G not as “a difficult dementia patient”, but as a father of three, provincial rugby player, keen gardener, doting husband. They changed nothing in the way that they “treated” – they simply saw him for the human being that he was. They dropped the “medical gaze” and saw the person. And Mr. G became that person again. 
Everyone reeled at this story. So simple, so powerful. Beauty is in the eye of the beholder takes on a whole different meaning suddenly…the Amanda Wearing poem asking “What do you see Nurses? What do you see? When you look at me – do you see a crabbed old woman, or do you see me…?”
See the person, not the disease.

Age friendly communities?

Growing older in a society that is not inclusive and supportive to the differing needs of those whose abilities have changed can often bring about shame and humiliation. Not being able to read a menu, hear what a waiter says, figure out the digital screen in the bank, hearing what the electronic voice says at the call center, figuring out the online visa application, switching to a new phone…the list is endless. We live in a society that is geared towards God knows whom – people who are super fast at crossing a street, techno-savvy, have perfect sight and hearing and are ultra clever at figuring out the digital washing machine. (I recently got a new washing machine and COULD NOT for the life of me get the bloody thing to wash. It took me literally hours before I gave up, feeling like a total idiot!) 
The list of challenges might sound simple, yet in a fast moving world where people are not very patient, older people and people with different abilities are often left behind feeling inadequate, ashamed of not being able to figure things out, exhausted of trying to pretend that they are on top of things, and embarrassed to have to ask. 
Being hard of hearing is a reality for many – at R20 000 for a little hearing aid many people simply cannot afford the luxury of it. This makes communicating really tricky – and often people think you are just stupid.
Last week I was at a conference at a super smart venue where I parked my car in the parking garage. The minute I got out of my car I bumped into some people I knew and have not seen for some time. We chatted, got into the lift and arrived at our destination. Of course – when I needed to find my car at the end of the day I had no idea where I left it. I walked up and down clicking the key hoping to see the flashing lights. (Sadly my car does not bleep…) My own fault that one – however it just made me aware again of the challenges faced by people who find the world a difficult place to navigate, and the insecurity, shame, humiliation and vulnerability that ensues. Do I go and ask someone in a control room? Nope. (I know they will ask for my registration number. ‘Nough said…)
We often blame the feelings of being lost or “wandering” on the disease when people are living with cognitive impairment. We get SO frustrated when our older parents would rather stay at home than go out. When we explain over and over how the new Smartphone works and they keep on sending empty Whatsapps. Seldom do we blame the environment or take into consideration just how challenging it must be to navigate some things.
How do we even start to create a more inclusive, supportive environment? Can we actually slow down, be more present, speak in a more articulated manner, wait for them to figure it out? (I see that my Mom battles with the STUPID little mini jam packages in a restaurant – do I take it and do it for her or do I leave her to do it at her own pace? Do I read the menu to her and tell her what she would like to make it quick while the waiter is looking around anxiously, or do I ask him to come back a few minutes later?) The simplest questions – but what is the message that we send with “here, let me do it?”. “She would like…” or often “wait in the car, I will run in quickly!”. 
Our world has become a disabling one that is simply no longer user friendly for the majority of people. What is considered “normal” is either too high, too soft, too loud, too complicated, too fast, too slow for millions of people who then give up, withdraw and become sidelined. 
I will leave the lecture on vulnerability to Brené Brown. But next time you cannot find your car in the airport parking garage or you battle to figure out the instructions of a new device, think how it must feel when your entire life consists of being made to feel stupid or too slow, and what it will do to your sense of Self.

Let it be.

We do not have the answers to all of life’s questions. In fact, there is no one set of answers. As we are all unique individuals who grow old in unique ways, there cannot be one set of universal truths. What works for one, works for one. If you have met one person living with dementia, you have met one person living with dementia. 
I read more and more about “the stages” of dementia – just yesterday someone wrote on a Support Group that her Mother is in stage seven!! Goodness me – really? What does this actually mean? Who created these stages? What are the defining parameters of these stages? Is it not yet again a way of boxing people in, of trying to make sense of the complexity trying to label and categorize? Finding a cure, a solution to “the problem”? 

If we really and truly can embrace the lived experience of a person with cognitive impairment, we will honour them for who they are, how they are, and how they express themselves. We will meet them where they are at, and not judge or measure them for how they “fall short” of OUR way of being in the world. We will make it our business to step outside of our own paradigm, and step into their (wonder)world of being. It will require of us not to judge, not to measure, not to compare. It will need us to let go of our perceptions and preconceived ideas. To look with different eyes and an altered gaze, respect, recognition, trust (Kitwood) to see this person for who they are and where they are…
Speaking at a conference last week an old friend said to me about my presentation – “you are very esoteric and philosophical”. Like it is a bad thing, he wanted me to “come back to earth”. For me, it is this very esoteric and philosophical approach that creates a framework through which and by which we can make sense of what we see. If our only framework is our OWN reality, we are constantly trying to squeeze people into our box. That way, we end up alienating people who dare to be different. We are so busy trying to figure out what is “wrong” with them, that we totally forget to see them for who they are, their battle to deal with our concrete thoughts and their sense of alienation. If we can step out of our contained space and enter their world in a loving, kind, compassionate and non -judging way, we might just meet the real person. 

Letting go of our prejudice, our frames and perceptions and judgements, we will come to discover not a series of phases, but a journey of being. We will again see the person beyond the disease, the individual whose mind has changed. If we can change OUR mind to meet them where they are at, we will connect in a way that we did not imagine possible. We will feel the presence, see the sacredness of the human spirit, discover the vulnerability and embrace the complexity of Being. When we stop trying to figure out the other person and enter into their world, it will change ours forever. It will open our hearts and our minds. It will give us the most precious gift of being One. And we will begin to understand that THEY are OUR teachers. They are holding up the mirror – be brave to take a long, hard look at yourself. Ask yourself what it is that you would want when your time comes. For, we are all on our way there…