My parents both died of dementia in 2001/2002. My mother had vascular dementia whilst my father had frontal lobe dementia which involved him twice being sectioned. As a cognitive psychologist (as well as a daughter), the experience challenged my understanding of relationship, thinking, memory, reality, madness and metaphor. I set out here, some of the reflections which I wrote over that period.
Glimpses through Dementia
It’s 2am. The telephone in our bedroom suddenly warbles and pulls us rudely out of a deep sleep. I fumble for the receiver and hold it awkwardly to my ear.
“I’m very worried about the pope”, says my father (a lifelong Anglican) at the other end of the line, “he’s been deliberately miscalculating the number of people living in Albania…”. “Daddy”, I reply, “it’s 2am – the middle of the night!”. A pause “Is it? – oh, I’m so sorry – but I thought you should act on the Albania situation while there’s time”.
I lie back on the pillow, all hope of sleep gone and prepare to let him tell me all about the Albanian situation but already he’s moved onto other diverse topics. For the next 10 minutes, international figures and personal friends move on and off a stage where the scenes change seamlessly from Albania to classic sailing boats to an imagined tea with the Bishop next Tuesday. Eventually, it’s all off his chest and we can wish each other a gentle goodbye and God Bless and perhaps (on my part) a subtle reminder that most of the rest of his friends and family are sleeping right now. I replace the receiver and maybe could drift back to sleep but now my husband wants to know what the call was about and the process of reconstructing the ever-shifting story of popes and bishops and boats at sea along with the questions over the population size of Albania and who is coming for tea is a cognitive challenge which leaves us both wide awake – our minds buzzing with life’s possibilities.
Sadly, both my parents, now in their 80’s, have dementia and are in residential care. Their deterioration is a painful and bewildering process for them and for us but it is threaded, in and out, with some of life’s greatest themes: relationship, identity, truth, life and death. And every now and then, we get a sudden glimpse of something humorous or puzzling or profound which we probably never would have stumbled across in more ordinary everyday life.
In my father’s case, dementia has overtaken him suddenly after long years of the strain of looking after my mother. As a man who has long been a delightfully eclectic, whimsical and lateral thinker, always seeing life from a slightly different angle from anyone else, the expression of my father’s dementia seems to reflect these identifying marks in the same way as a cartoonist’s sketch first distils out and then exaggeratedly distorts the exceptions in someone’s facial features. In his book, ‘Consciousness Explained’, Daniel Dennett talks of the mind being like a fertile pool where multiple thoughts and ideas are constantly bubbling up and competing with one another for attention. Our minds (when healthy) operate some kind of selection process so that we only express and use the thoughts or sentences which ‘make sense’ in the current context. In my father’s case, it as if his ideas pool is bubbling as merrily as ever but the selection mechanism no longer operates the way it should. It is maybe the same for the rest of us when we dream.
When he is not distressed by his imaginings, then we find ourselves enjoying conversing with my father, playing with the strangeness of life and chuckling at the humour of the bizarre connections he makes. Did the Princess Royal really over salt the roast potatoes on Saturday night? And when you dial ‘123’ for the BT Speaking Clock, does the clock on the bedroom wall really speak out the time? And how do you fit all the ideas you’ve had this week into a pair of socks which are too small? At best, it’s as fun and refreshing as an excerpt from Lewis Carroll. At least, it reminds us how dull and restricting it is when we let our lives and views be over constrained by the actual facts, the rational explanations and the precise hour of the day.
The other thing we are learning through my father is that madness is not something so frighteningly ‘other’ and conversely, reality is not quite as solid as once we maybe thought. Indeed, reality may simply be what we choose to call the most common interpretation of any situation. That does not mean it is the ‘right’ interpretation or even the most useful, simply the one shared by the most people. We call some people ‘mad’ when their view of the world becomes sufficiently different (or challenging) to this ‘norm’. We may call these people geniuses, but we may well reject their ideas to our detriment.
Even when my father ‘phones us, distressed by some reality or other, his fears are not foreign. He is expressing the same sweat-ridden fear and emotion which you and I do in response to the dark, Jungian shadows of our selves and our world. We experience these shadows and feel this fear in our dreams. This is not foreign behaviour. If I pause and reflect, I can understand and relate to his distress.
My mother’s decline has been a much slower and more gentle one; for her it has been like a slow descent into an ever-thickening fog which first clouded her memory and then her other senses and responses. Most days now, she is totally silent barely responding to our visits or attempts to communicate with her. But, every now and then, totally without warning, it is as if the fog clears for a moment in time and she will look at you and smile. Maybe she will reach out her hand to touch yours or say something to you – a charmingly prosaic remark which makes perfect sense in the context, for example, “please can you pass me that piece of cake?”, as she points across the tea table. And, suddenly, there is this intensity of connection with her which, almost as you register it, has gone again as the fog re-envelops her. You find yourself looking around the otherwise empty room to convince yourself that the words can only have come from her!
One precious visit in October, the fog for some reason cleared for an entire afternoon and she and I lay on her bed and ‘chatted’ to one another in disjointed, spasmodic, but real exchanges. By the next visit, the fog had entirely closed in again and she looked straight through me once more. In the rest of life, it is possible to engage in many conversations of many words becoming careless of whether they make genuine connection or not. Communicating with my mother is now the exact opposite. It is entirely focused on finding a single phrase, a touch, a facial expression which will reach through the fog and make a momentary connection.
In contrast to my father, her pool of ideas and thoughts has slowly ceased to bubble but, when occasionally it throws something up, her selection process is still in perfect-operating form and only the appropriate sentence or gesture for the moment is expressed. How intriguing the mind is. When she occasionally smiles at my father or takes his hand, it may even be because she (unlike him) can tell that, whilst he may be able to talk, he is actually talking nonsense! An old friend who was visiting them one day was trying, at length, to correct one of my father’s unfortunate ‘misinterpretations’ of the world when my mother (who had not uttered a word for days), reached out and closed the friend’s lips with her fingers. As ever, she saw it as her role and no-one else’s to shut my father up when necessary!
Before this all happened, I used to think (to the extent that I thought at all) that people died when their bodies stopped physically functioning. Life meant a beating heart. I am now slowly starting to recognise that the picture is much more complex than that. In fact, why do people with dementia die when they do? Maybe they die when their ability to connect with people, to connect with their God, to sense the world around, to create ideas or to feel an emotion has totally gone – until then they are very much living and living the essentials of life. I don’t know the answer, but I know that on this journey with my much loved parents, my naïve views on the great themes of madness, reality, communication, love, life and death are all being challenged to the core.
Love, Truth and Prunes…
“The essence of metaphor is understanding and experiencing one kind of thing in terms of another.” (from Metaphors We Live By, G. Lakoff and M. Johnson)
I was recently listening to John Killick on Radio 4 talking about his conversations with people with dementia. It reminded me of the amazing (and lengthy) ‘phone conversations which I used to have with my late father. My father had fronto-temporal dementia and spent his last couple of years in a specialist home in Oxfordshire. Too far away to visit each week, my brother and I used to call him every other day or so – just to chat. Actually, my father used to do most of the talking – sometimes holding the ‘phone to his mouth and, sometimes carefully placing it (mid-sentence) in the pocket of his much-loved, old tweed jacket. At this point the conversations would become inevitably more muffled (at his end) and shouty (at mine).
As a cognitive psychologist, I became fascinated by his increasingly creative use of language and metaphor. As his daughter, I just enjoyed connecting (where I could) with the eclectic mixture of meanings, pleasures, memories and humour which summed my father up perfectly. It certainly taught me that communication with someone you love is not about facts and coherent sentences but about the rhythm of conversation. Even though I often couldn’t follow his precise meaning, I could catch the drift and join in and I found that conversations which didn’t rely on (shared) logic and facts or even any standard notion of coherence were actually warm, fun and insightful and, above all, made me feel close to him.
My father’s conversation was increasingly dominated by a fixed number of interrelating ‘themes’ most of which had been important throughout his life – his Christian beliefs and life as an Anglican lay reader preparing weekly sermons and services, his loving care for his wife (my mother) during her long years with dementia – (had she eaten all the prunes he’d given her?, could he get her clothes dry before morning?). Then there was his lifelong love for sailing and the sea and finally his (recently acquired) fear of MRSA (which he contracted during an earlier stay in hospital).
For a while, prunes (and their consumption) were the single dominating theme ‘Love, Truth and Prunes’ became his recurring phrase – the subject (it seemed) of a sermon he was constantly looking for the right opportunity to preach. Meanwhile, he would devour these fruit by the dozen. Whilst in psychiatric hospital in Oxford, we took to shipping tins of prunes in by the box load in the hopes of keeping the anxious ward staff abreast of his demand.
Below are some examples of my father’s metaphors which I jotted down as he chatted on the ‘phone and some thoughts on what I took them to mean…
“the idea is 18 prunes, followed by 5 cornflakes and then 3 hymns which is ideal in setting the stage” I guess the cognitive acts of planning a balanced meal and planning a balanced Church service are not that dissimilar – in both cases, my father knew he needed to hold the interest of a potentially distractible audience!
“in the last hour, they’ve been quietly wheeling out the less confident members of the congregation … they’re collecting them in special yellow bags and disposing of them by the lift” Here, I think, there’s a cross-over between the institutional process he witnessed for disposing of unwanted or unacceptable items and the process of ‘disposing’ of unwanted or unacceptable people. As he struggled with nursing home culture, did my father fear that he might be one of the latter?
“you need the confidence here to know how to respond to each eddy and gust… some good friends came alongside and gave me a tow to lunch” Living in a nursing home was a traumatic and difficult experience for my father – I liked this familiar sailing analogy of reacting to gusty, unpredictable wind conditions (over which you have no control) and then the concept of the friendly ‘fellow sailors’ “coming alongside” and offering a slightly slow (and increasingly unstable) vessel a welcome “tow to lunch”.
“so much detail gets increasingly important but it’s very very demanding on my back” Here maybe the increasing ‘pain’ of struggling to manage detailed information in his head became mixed with the physical pain of a stiff back?
“there’s a lot of literature in the bathroom which has not been properly aired .. I tried to build up in my library material about changes in underclothes” In the latter days of caring for my mother, the floors, tables and chairs of their house were always covered with a random selection of my father’s sermon notes, lists, ideas and correspondence together with my mother’s clothes which always needed drying. Maybe my father worried about his sermon plans not being ready (or ‘aired’ we might say) for use on Sunday morning?
“I’ve been towing the content of my origins but the ground is very uneven but I’m leaving literature in the thin patches”. In his small room in the nursing home, my father had a small number of his much loved boxes of ideas, lists, letters and sermon notes – he would constantly empty these out on the floor (and bed and chairs) as he sorted and re-sorted them, read and re-read fragments and tried to make further notes with his vast collection of coloured pens. It felt as if he might be trying to reconstruct his sense of his identity (or ‘origins’) from the paper fragments lying on his floor but maybe this process felt as stumbling and uncertain as his increasingly unsteady attempts at walking along the corridor to lunch.
“it’s very cold here – the heating arrangements were superb but now they’ve been deperbed” – And finally, this is just one of the many examples of my father’s playful use of language. I find it fascinating that a brain, sadly damaged by this stage, could still generate entirely original and consciously humorous turns of phrase.
I miss our conversations.
Picasso Portraits, Dementia and Identity
A few weeks ago, I spent half an hour chatting with an elderly lady with dementia. For the purposes of this blog, I’ll call her ‘Lilian’. One of the remarkable aspects of Lilian’s conversation was the way she moved fluidly between a range of different persona as she chatted to me. To start with she was ‘Lilian’ talking to me (a stranger) about the hot and sunny day we were enjoying. A moment later, she switched her tone and was admonishing ‘Lilian’, the young child, for some (unexplained) misdemeanour. Then, she took the role of her husband, talking fondly to ‘Lilian’, his familiar partner, about the goings on of the day and, still later, she was an anxious ‘Lilian’ discussing with her sister their worries about their ill father (long deceased).
Initially, I found the track of Lilian’s conversation hard to follow but, as I relaxed from trying to make it fit ‘the normal conventions of conversation’, I realised that, intended or not, Lilian was painting, much as Picasso did, a startling representation of herself with all her different persona overlaid. Just as Picasso’s portraits can appear confusing and odd, when first encountered, because multiple perspectives are present simultaneously, the same was true with Lilian’s expression of herself to me. As with Picasso, I needed to relax the restrictions of the “normal rules of expression” in order to appreciate the insights such a portrait of a person gives. Lilian’s communication wasn’t lesser – it was simply different and a powerful portrayal of a person’s multi-faceted identities – the view depends on where the viewer stands.
Now I reflect on it, something similar has happened with my parents who both died in the past 3 to 4 years. I realise now that my sense of who they were was a restricted, one-dimensional view bound by where I had grown used to ‘viewing them from’. Since they died, fragments of conversations with their friends and relatives, have introduced surprisingly different perspectives on who they were and slowly, as time goes on, my sense of them has become more like a colourful Picasso portrait. There is still (and maybe always will be) a dominant perspective (based on my experience of them) but now there are multiple views inter mixed with that and the portrait of them in my mind is both richer and more mysterious. Is it only possible to gain that richer perspective of someone you know and love when they are no longer present binding you to a single view? I don’t know.
Actuality or underdone potato?
“You don’t believe in me”, observed the ghost.
“I don’t”, said Scrooge.
“Why do you doubt your senses?”
“Because”, said Scrooge, “a little thing affects them. A slight disorder of the stomach makes them cheat. You may be an undigested bit of beef, a blot of mustard, a crumb of cheese, a fragment of underdone potato…”
From ‘A Christmas Carol’ by Charles Dickens.
To what extent does our body chemistry affect the way we think and experience things?
My father suffered fronto-temporal dementia and I used to chat to him by ‘phone every couple of days. Some days, he’d have lots of positive things to tell me – how the breakfast porridge was just how he liked it, the sun was shining, the wind and tide were just right for sailing and the staff in the nursing home where he lived were all being helpful and kind to him. Other days, I would be hit with a storm of anger and distress from the moment he answered the ‘phone – the porridge had been cold, the staff had stolen his clothes and the police cars were keeping him awake all night – plenty enough to make someone really peeved.
I always found the latter ‘phone calls stressful but, until I got more used to them, they also used to make me panic – I clearly needed to drive straight over and help him get some breakfast, find his clothes and see what was happening about the night time police cars. By the time I got there, often things would be fine again – my father, fully dressed would look confused by my concern – “what porridge?” “what police cars?”…
Was he mad? Well, in some senses yes he was (a little) but his condition made me think about my own reactions to things and my interpretations of everyday events. I guess I had always thought that the events came first and then my emotional reactions to them. If the porridge is cold, I’ll get irritated. If the book is well written, I’ll enjoy reading it. But is that always the case? – maybe the chemicals in my body vary in some unrelated ways (due to that undigested bit of beef perhaps) and my emotional state then affects ‘what I see’ and how I make sense of it at that moment in time. If I’d avoided the beef, maybe my view on the porridge or the book I just read would have been rather different.
I’m interested in the ways in which dementia gives us insights into the ‘strangeness’ of how we ‘normally’ think about things….
For example, the way we use time to order how we think about things and the significance we attach to them.
In the books they write, authors often play with the chronological ordering of events – sometimes time shifting between two periods of significance in people’s lives or starting with an event at the end of someone’s life and then working back to the outset, making connections through the use of flashbacks. Well used, it’s a compelling technique and can deliver much greater understanding of someone’s character and motivations and the overall meaning or ‘story’ of their life.
Chatting with people with dementia, they quite often do the same – talking one moment about the pleasure of seeing the flowers in the garden on this sunny day in July (2006) and the next moment about their wedding in June (1950) or the birth of their first child. Their conversation and expression of feelings moves fluidly between significant events in their lives which might be 60 or 70 years apart or only a matter of minutes or hours – childhood moments, yesterday’s visit, their first job, getting married, today’s lunch, having children, losing a parent, etc. As a listener, at first that feels confusing (like flashbacks in a novel or film equally can) but then it gives you insight by connecting life events by the similarity of the emotions, ideas or sensations involved rather than, necessarily, by their chronological order.
Some months ago, Chris Anderson (the now famous author of ‘The Long Tail’) talked about how dominated we’ve become by the newspaper model where significance of events or information or ideas is tightly correlated with their recency – nobody reads yesterday’s newspaper even if the articles are actually better than today’s. But, Anderson points out, this is changing as people increasingly use search engines to find information, articles and ideas online. This is because search engines are effectively, ‘time agnostic’- significance to them is measured in terms of the number of links a page has gathered rather than how recently it was written. People with dementia are a bit like this – i.e. they become ‘time agnostic’ in that the events they talk about are the ones with the most significance – as measured, maybe, by the number of links to other events, emotions and ideas in their lives.
We think we are the ones who are NOT confused – but if we always so strongly equate significance of ideas with recency, then maybe we are the ones who think ‘strangely’.
Our memory of “The Facts”
I have to confess to being an avid follower (although rare contributor) to various Welsh rugby chat lines although I think it’s my love of psychology rather than my love of rugby which keeps me glued to these discussions.
I particularly enjoy the heated debates about “what happened at the game last night” – how can two parties who both (in theory) witnessed the same game (albeit wearing different coloured shirts) produce such wildly different “factual” accounts of what happened? I can understand there would be differences in interpretation between the two sets of supporters and certainly differences in the perceived significance of various incidents but it’s the differences in the reported facts about individual performances which intrigues me.
So, I was interested to read a few weeks ago about a study by David Pizarro at Cornell University. He told experimental subjects a ‘true’ story about a man who walked out of a restaurant without paying the bill. Half the subjects were told that the man left the restaurant because he was a thief who regularly stole. The other half of the subjects were told that the man rushed out because he’d received an emergency call on his mobile ‘phone. A week later, when recalling this story, those who had been told the man was a thief remembered the restaurant bill as being 10-25% higher than it actually was. Those who thought the man had rushed off to deal with an emergency recalled the bill as being lower than it actually was!
So, it seems our memory for facts can indeed be altered depending on the attitude we hold towards the key actors in any event.
My late father, who suffered from fronto-temporal dementia, used to relate to us increasingly distorted factual accounts of his day to day life. He once told me how the previous day “two young men grabbed hold of me so hard that one rib bone flew past my right ear and one past my left ear and I hit the ceiling so hard I stuck there by my hair”. In his case, my father seemed to have reached a point where his mind would fairly freely construct a ‘factual’ story out of nowhere to ‘account’ for his strongly positive or negative attitude towards individuals he had encountered. His memory for events seemed disturbingly bizarre at the time. But, on reflection, maybe it was simply a more extreme version of the way all our memories work – we start with a gut level emotional response (blood chemistry basically) and construct (or at least adapt) the ‘facts’ to match the feelings.