Conversations
Published on Amazon KDP – Come and talk with me – is a collection of conversations – that I have had with people living in Redbond Lodge, a residential care home in Great Dunmow, in Essex.
All these conversations, bar two, were with people living with various degrees of Alzheimer’s and similar conditions. They bear witness to the mind that remains fully aware of big changes in one’s life, brought about by physical brain diseases. A mind that meanders over one’s life with an imaginary remote control in one’s hand, spanning over seemingly unconnected scenes, going backwards and forwards, desperately looking for the links between the different episodes.
I am fascinated by the ability of the mind to do this. Medical professionals tell us that a person ceases to be the one we have known once Alzheimer’s destroys our brains.
These conversations suggest otherwise. Through the mist of confusion in the sequence of events, the mind remains fully aware of who we are and what our wishes and desires are, though others might decide otherwise on our behalf.
Please read these introductory pages to the book and I hope that you will be inspired to read the conversations. Available as a paperback and as an eBook on Amazon.
• Come and talk with me: Amazon.co.uk: Drever, Mina: 9781399911337: Books
• Come and talk with me eBook : Drever, Mina: Amazon.co.uk: Kindle Store
Come and talk with me
Welcome
I hope you enjoy reading these conversations as much as I have enjoyed writing them.
I had been visiting residents living in Redbond Lodge Residential Care Home in Great Dunmow for about four years, when Covid-19 invaded our homes and our lives and I had to stop my twice-weekly visits.
Many of the ladies and gentlemen with whom I sat and chatted had become my friends as much as I had become, to a few of them, the only visitor that brought a welcome distraction from their mental loneliness.
With the Coronavirus lockdown, unable to continue with these visits, I decided to recall some of these conversations and write them down from memory so that I can give a voice to those who feel that their thoughts and feelings are often dismissed as meaningless meanderings – and also, to pay homage to them.
I wish to emphasise that these conversations were never recorded. They were not interviews. No scripts exist of these chats. When I say that I have written them down from memory, I mean exactly that. I have sat and chatted with many people over the course of five years and more. I do not recall all of them. The five conversations in the first section of this book and the two in the fourth section were repeated so many times that I only have to visualise the person in my mind and they all come flooding back, with the hesitations, the voice tremors, the shrugs of the shoulders, the welling up in the eyes, the smiles, the delights of just talking and being listened to. I can see them and hear them all so clearly.
The third section of the book – the Incidental conversations – contain a few brief encounters, unplanned yet forceful in their vehemence. I can see the faces and hear the voices, but not the names. They were just that, incidental yet powerful in the messages I was receiving.
The families of the seven conversations in sections one and four have kindly given permission for me to publish them in this book. They have read the conversations and they have not changed a word. From this I take comfort that I have been faithful to their relative’s words. I am grateful. I hope you will come to appreciate the force in the words of these few people. I believe they represent the mental lives of millions of people worldwide whose minds are incapacitated by brain diseases.
WHY WRITE DOWN THESE CONVERSATIONS?
When I chatted with the people in these little scenarios, I wanted to get to know each person because I am curious about people’s lives, what makes them who they are, how they got here, to this point in their lives.
Ever since I can remember, I have been fascinated by the power of life’s experiences that older people could talk about. As a young girl I would sit enthralled by older relatives and friends of my parents as they recounted stories of lives’ experiences that sounded adventurous to my unworldly imagination. My interest in the world took roots not in books nor in television nor in magazines, but in the lives of the older people in my young life. I am now an older person in many young people’s lives. I am still fascinated by ‘other’ people’s life adventures – whether as shopkeepers, cleaners, civil servants, doctors, hairdresser, mother, father – each person’s life is fascinating.
Many people – including those in the medical profession – have difficulty talking with relatives or friends or patients whose mental and verbal abilities have been disabled by neural disturbances in their brains. As I got to know residents in Redbond Lodge Care Home, the managers would often ask me to visit particular persons because they seemed unhappy or distressed. I would report back my conversations and the managers would often act on issues that might have had a bearing on a person’s well-being. For example, a resident might be worried about a family member and wished someone to call the family on their behalf; or a carer might have been inadvertently (occasionally not inadvertently) verbally unkind; or they just wanted someone to just sit and chat. Residents are acutely aware that carers are so busy with so many people to care for.
Sue King, the general home manager at Redbond Lodge, would often say that residents would tell me things they didn’t tell carers. I began to wonder whether I used language in a fundamentally different way that engaged people. I became aware of this whilst I was writing a memoir[1] of my mother’s life during her ‘dementia years’, as I used to call them.
I began to work on an idea that I had had for quite some time and which I discussed with the manager at Redbond Lodge, Sue King. With Sue’s support, I developed my idea into a short training programme for sixth form students on how to hold good conversations with people living with Alzheimer’s or similar conditions.
THE STUDENTS AND THE TRAINING PROGRAMME
The students came from Felsted School, near Great Dunmow. We had workshops on how to use our language in a slightly different way, and how to listen, in order to have a two-way conversation with people living with memory loss and mental confusion. They were amazed at how easy it was to involve some of the residents, whom they visited, into meaningful conversations that made sense.
The students were also astonished to discover that – contrary to what they were growing up to learn from the media and from general talk around them in society – these residents that they met were not ‘mad’ as the word ‘dementia’ suggests that they might be.
After this experience, the students agreed with me that the word ‘dementia’ is not a good word and they liked my suggestion that maybe we could use a different word, one that I constructed: Amelesia. The manager at Redbond Lodge liked it very much too and believes that the whole world should adopt it.
Amelesia means unmindfulness. I suggest that people affected by Alzheimer’s or by Lewy Body or by Huntingdon’s Disease are not able to concentrate on conversations in the normal way, because the damage to their brains makes it difficult for them to focus their mind on anything for any length of time. In other words, they are not capable of being ‘mindful.’ So, they find themselves in a state of unmindfulness.
We, the students and I, agreed that it is possible to hold and sustain good conversations with ‘brain damaged people’ (because that’s what Alzheimer’s and similar conditions do – they damage our brains) if we adjust the words we use and the way we say them, listening carefully, picking up cues and giving time for people to decide on an answer.
An unexpected result of this type of conversation is that, through the exchange of simple language and through simple listening and picking up cues, we find incredibly strong characters that have been somewhat diminished by society’s attitudes towards people diagnosed with ‘dementia’.
I will wager that readers of these conversations will have encountered professionals who have told them that the ‘mother’, the ‘husband’ the ‘grandmother’ is not the person that one used to know: he/she has gone. I have been challenging this attitude for a very long time, since my mother was diagnosed with ‘vascular dementia’. I realised very early on in this new life of hers that ‘vascular dementia’ was a licence to ignore the stories she would tell as imaginings of her ‘demented’ mind.
The students who came to visit and chatted with some of the residents living with mild to medium degree of mental decline because of a brain disease, were astonished to find indomitable characters delighted to talk about themselves. They just need a nudge for them to open up, in jolts and starts, maybe, and share their precious experiences.
A FUSION OF TIME AND SPACE
I noticed one particular and striking aspect of the mind affected by Alzheimer’s and similar diseases: each person’s life is affected by some powerful event or events which remain indelibly etched in the person’s memory structures of the brain. Those memories seem to appear to the fore of people’s mind unbidden and at surprising moments. They seemingly have no bearing to what might be going on all around. These events are so vividly expressed, it’s as if I am experiencing them with the person telling me their stories.
For example, see my conversation with Millie in section one, who suddenly wanted to share her big ‘secret’ with me one morning in the midst of me asking her what she would like for breakfast. She had her eyes shut when I spoke to her. Had she been reliving this secret in her mind? Or was something in my tone or my voice that reminded her of someone else’s voice? Someone who had been with her at the moment of this secret? Something must have triggered this memory and she was experiencing it as if it were for the first time. Millie had two children. She had grandchildren. She was reliving that moment as if it were happening at that very moment. She was no longer, just for a moment, a lady with grown up-children, grandchildren and great-grandchildren with severe physical and mental disabilities: she was a radiant young new mum. Who was I to deny her that momentary joy? I was witnessing what I call, a fusion of time and space which occurs in our mind as a result of brain damage in our brain’s physical structure. We are not simply recalling, we are reliving that moment as if it were now.
The idea that our mind wanders through the experiences of our life in a different way when healthy and when damaged by brain diseases came to me when my mother’s brain was damaged by vascular dementia. I observed an amazing phenomenon taking place right in front of me: my mother merged memories from long ago with a present moment as if they were one and the same experience. For example, see her conversation with my sister Lucia about Lucia’s sons in section three. My mother knew that her daughter had two sons, but in her mind, they were small children. Though her daughter in front of her at the moment of the conversation was obviously a much older woman than the young mother she had been, our mother’s mind merged a fact from her past, with the present experience and remembered that someone was looking after her young grandsons.
I started to imagine my mother’s ‘mental meanderings’ as a fusion of time and space. I was not aware then of the theories of time and space in astro-physics. I never studied physics and my knowledge is limited to what I learn from TV programmes such as those presented by Brian Cox [2] Wonders of the Universe.
A few years ago, while idly listening to the radio, I heard an Italian theoretical physicist, Carlo Rovelli, talk about time and space in the universe being one dimension in which there is no past, no present, no future. He talked about a ‘continuous present’.
I wondered if my mother saw her life, in her mind, as a continuous present, with no clear demarcation of what had happened at different times and different places. In one sentence she would often talk about people and events of previous times as if they were taking place ‘now’, in the presence of people that were present in ‘both times’, the past and the now.
This is difficult to explain. I talk in my memoir that my mother seemed (to me) to see her whole life like a film in which the scenes have a cohesive meaning but no sequence. When the scenes took place becomes irrelevant. Only the WHOLE story matters. How and when they took place does not.
I started to read more about time and space in popular science books after this first encounter with Carlo Rovelli on the radio. I began to ask myself whether my mother’s mind, operating now in a physically damaged brain, was a reflection of space-time in the universe where there is no past, no present, no future. Only this harmonious vastness of ‘happenings’, which is eternally ‘there’.
Does our life show itself, in our damaged brain, as a ‘wholeness’ which is eternally present, (while we live) in our minds? Do we see distinct ‘pieces’ highlighted as we scan it, just as we might scan a panorama with binoculars: different bits come into focus as we move the binoculars?
Apparently, some physicists have been considering whether our brains see our lives’ events as a film. The neuroscientist Dean Buonomano in his book Your brain is a time machine [3] considers this idea with reference to some of these physicists. He quotes (on page 171) one physicist called Julian Barbour describing watching a kingfisher in flight:
My brain contains, at any one instant, several ‘snapshots’ at once. The brain … somehow ‘plays the movie’ for me … I see … six or seven snapshots of the kingfisher just as they occurred in the flight I saw. This brain configuration, with its simultaneous coding of several snapshots, nevertheless belongs to just one …
Julian Barbour is saying that when our brain sees something happening with an object or animal or person in it, the brain makes immediate links to other times when the same object/animal/person were observed and multiple images present themselves to the mind at the same instant.
This was happening in my mother’s brain. Her mind, operating in her damaged brain, was not sequencing the events in the order they might have happened as known to other people who might have been familiar with those events. Her mind was making emotional and factual connections of events. The timing of these events was blurred. They overlapped with one another. But they made sense to her. And they made sense to me because I had known her life. I knew she was not inventing people.
We see this phenomenon in the conversations with the residents of Redbond Lodge in this book. The seemingly erroneous and irrational anecdotes may have a factual basis in the life of the person with whom we are chatting. They must not be dismissed as meaningless imaginings. We must respect them. They are a life that has been lived. Memories come to mind a bit like pieces of a jigsaw puzzle. If we listen carefully, over time, we can create a complete picture of a person’s life.
I AM STILL ME
I hope you will discover, as I did, that the person living with mental confusion and poor mental co-ordination of thought is still the person he or she used to be, in some form, in some way: it’s up to us to find that person through conversation.
It does not matter how tiny is the fragment of revelation that we may hear of this long and lived existence. There might just be something that is revealed that you never knew about because we are, each one of us, more than just the person that others may think they know.
Here is a quote by Carlo Rovelli, the Italian astrophysicist that I mentioned above. He writes very clearly about what time and space in our universe are and how they relate to how we humans think of spacetime and how we develop and change with the flow of time. He says in one of his books that we should not be constrained by a simplistic idea of who and what we are, because:
We are histories of ourselves. Narratives. I am not this momentary mass of flesh reclined on the sofa, typing the letter ‘a’ on my laptop; I am my thoughts full of the traces of the phrases that I am writing; I am my mother’s caresses, and the serene kindness with which my father calmly guided me; I am my adolescent travels; I am what my reading has deposited in layers in my mind; I am my loves, my moments of despair, my friendships, what I have written, what I have heard; the faces engraved on my memory. I am, above all, the one who a minute ago made a cup of tea for himself. The one who a moment ago typed the word ‘memory’ into his computer. The one who just composed the sentence that I am now completing. If all this disappeared, would I still exist? I am this long, ongoing novel. My life consists of it [4].
AMAZON LINKS TO BOOK Come and talk with me
Come and talk with me: Amazon.co.uk: Drever, Mina: 9781399911337: Books
Come and talk with me eBook : Drever, Mina: Amazon.co.uk: Kindle Store
[1] The memoir is called Thank you lady by Mina Drever, published by Austin Macauley and available on Amazon
[2] At the time of writing this, September 2021, Brian Cox is professor of particle physics at the University of Manchester, UK
[3] Your Brain is a time machine. The neuroscience and physics of time, by Dean Buonomano, published by W W Norton and Company in 2018.
[4] This quote is by an Italian astro physicist who writes beautifully about what time is in our universe and how we humans understand time. I read him to try and understand how our brain’s system of memory works with respect to how time is understood to function in the universe. I confess to being quite overwhelmed. But I love his thoughts on what we really are.
Carlo Rovelli, 2018. The Order of Time. Penguin Random House UK. The quote is on page 154.