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Frances

A page from Frances's file of cut-up poems.

Session 1

 

Frances is the new resident in room 21. The room is filled with a jumble of bags and boxes. Frances is rather frail and she struggles to speak above a whisper. Most of the time she speaks rather slowly. Throughout each of the following sessions she wears a headset microphone, plugged in to an amplifier on her desk. At the beginning of this first session Frances is trying to make sense of the care home and the situation in which she has found herself.

 

I’ve stayed in this room before. It’s familiar. I stayed with a lot of other children, in a children’s home... I can’t figure it out. It was... seemed like it was, because my mother couldn’t cope with me. She was still young and she wanted to travel. She resented me.


Throughout the sessions Frances compares Room 21 with, or mistakes it for, or believes it to be, several other rooms she has occupied in the past, almost as though she is successively trying these other rooms on for size in order to work out where she might be now, and how or where this new location fits in the overall story of her life.  (‘Where am I?’ does seem to be the first question we ask when waking up or ‘coming round’ in a strange place).

At this point, when she has just moved in, it seems significant that Frances’ first association with Room 21 is the room in a children’s home where she once ‘stayed’ (rather than ‘lived’). This ties in with the strong theme throughout Frances’ story of feeling of abandoned, rejected and disowned by her mother.

It appears that Frances may have been left somewhere at a very early age, along with her slightly older sister, so that her mother could accompany her father on an overseas business trip.  Although this seems to have been a temporary arrangement, separations of this nature are now recognised to be traumatic enough for young children to give rise to lifelong separation anxiety in some cases.

In the place which is strangely familiar we are also – of course - in the territory of the unheimlich, or uncanny – those happenings which take on an eerie quality because they are repeated out of time or out of context. Dr Andrea Capstick


 

My sister wanted mother to herself. I never fought against her... I accepted it... I simply stepped back when she got mother’s attention.

My father had very blue eyes... or brown. There’s nothing more to say about him. He travelled.

We had a dog... a big dog... the name will come soon... I’m talking myself towards it.  


Fascinating that she describes talking as a process of movement, as a journey towards a word in this case. During Where The Heart Is I have heard many people talk about the words they’ve lost in this way: ‘it’s coming’ ; ‘I’ll get there in a minute’S.B


My early years are a bit vague... my later years, I’m afraid they’re a bit more vague… It says here ‘Label Everything. We are not responsible for items that go missing’. What does that mean?


Interesting comment - was it an aside or a statement about being labeled herself and the staff not being responsible for losing her? Dr Peter Whitehouse

This seems important to keep, because Frances is so worried about things being stolen or getting lost, and this is a good example of how apparently innocuous aspects of care home life can play on such anxieties – maybe add a note to this effect? AC


 

My sister said three times that I had... and it upset me... and I took her to task on it... my sister worked for the UN.... no, no she didn’t... I’ve got a bit mixed up here... let’s start this straight, my sister said that I had the same as her in every way... that I was mentally... what do you call it? Not insane... demented... and it wasn’t just my sister... they were all trying to prove that I was suitable material to go into the mental home.



I wonder if her sister had suggested that she was ‘paranoid’ in her belief that they were treated differently by their parents, and this is the word she is looking for when she says ‘mentally what do you call it?  Not insane…’  It may be that two or more episodes get conflated here – things her sister said in the past, and the recent diagnosis of dementia. AC

Frances sense that she is being seen as ‘material’ is fascinating.  HZ


That shocked me. I had an absolute fit. I know I lose track sometimes but we all do that... don’t we? I think I’ve got it sorted out now... People have been leaving doors open... and draughts... and all that kind of thing... it really doesn’t help my situation... if you close the door it might help me to remember... where do you want me to start? 

 


An anxiety about not wanting to reveal, or of hiding, something runs throughout this ‘story’. Actually I find her reticence completely understandable; it seems amazing that so many people moving into care accept the openess of communal living with relatively few problems. DC

"Where do you want me to start" -This feels like a physicalisation (and reversal) of the cliché (which all of course come from some kind of truth) about opening doors onto new opportunities, new ways of thinking. S.B.


 

I stayed in a home with a lot of other children... a saved children’s home... I’m trying to make sense of it... yes... it was because my mother had my sister... and I came too soon after my sister. My mother couldn’t look after me... my father was going on trips and he didn’t want to take us... of course he couldn’t take two young girls... my mother knew a Quaker lady who took in children... so we went to her."

 


It’s probably unconnected, but I came across a reference to a Quaker-run boarding school in Kent for children who were evacuated from Germany.  It opened in 1933 and also accepted British children.  Something like this would explain the reference to ‘saved children’.  If this - or something like it – were the case, Frances and her sister would also have been in the company of other very distressed children, some of whom may have already known that their own parents were missing.  In any children’s home, it’s likely that their belief that their own parents were going to come back for them would have been undermined by what they came to understand about the reasons for the other children being there.  The later reference to running ‘down to the gate, along the gravel track…when my mother came to see me’, sounds to me as though it may come from this period in her life, rather than later.  Children – being closer to the ground – tend to retain details like this. AC

I think the gravel path and the 'saved' part of the saved children reference stems from the Turkish invasion of Cyprus. As I remember the gravel path comment follows on from a comment about snipers and bombs. I seem to remember that the UN established camps to care for and educate children whose parents had been killed. DC


 

My sister absolutely hated the place... she was very, very unhappy. Mother was very fond of her... she was the first-born child... we were very different children... she shouts a lot... she’s volatile... very domineering. 

 


Sibling rivalry a strong theme. The fact that both children were left in the home tends to undermine Frances’ belief that her sister was strongly favoured. AC

Curious how haunting sibling rivalry can be and how much it can shape  / influence a person’s life. It seems that Frances has spent a lot of energy defining herself in opposition to her sister and in relation to her mother. HZ


 

My father was an exporter and he did other things as well, he... oh... well mostly his income came from exporting things... books I think... and my father was an artist also... (Frances thinks for over a minute) I’m wrong, he imported silk, expensive textiles... my Italian grandfather was the artist.

I started to write plays when I was a child... and poetry. I didn’t want my sister to read them so I hid them inside the wall, behind a lose piece of skirting, underneath the window in my bedroom.


This comment follows directly from her comments about her sister’s tendency to dominate and override.  She is hiding things from her sister. AC

This is such a strong image, of words hidden in the physical structure of the building. S.B

Childhood is often about hiding things, keeping secrets (especially from dominant sisters / mothers) and so forming a sense of self that is connected to but separate from our family. Poetry and writing as a private activity that needs to be hidden. HZ


 

I was always given to practical jokes and telling stories. One joke I played, actually I convinced my sister to do it so I wouldn’t get the blame... now what was it? I used to dress up in fine lace from my father’s shop and perform in the park with a huge folding dagger, and start stabbing myself all over the place... I’d be looking round to make sure people were looking at the excellent drama.

 


Here Frances seems flamboyant, and able to manipulate her sister, rather than retiring and secretive.  But maybe this is about taking on a different, more dramatic persona.  Perhaps this connects with the changes of name and John Berger’s comments.  It also puts me in mind of Alice Miller’s The drama of the gifted child.


 

I used to write down people’s conversations... all their talk about how far back they can remember. Then I’d put them in my script.



I think Frances is saying that she used to do what you (DC) are doing now, ie writing down her talk about how far back she can remember.  ‘Writing down people’s conversations’ also carries undertones of spying on people or interrogation.  This is another parallel with Shirley. AC

How interesting when someone’s narrative mirrors what the person ‘collecting’ and curating it is doing... because this is, in a way, a script, a collection of conversations. S.B


 

I think I’m looking for something... but I’m not finding it.

 


 

Session 2

 

We went to a private school in Brighton... my sister didn’t like any school... she was rebellious and she didn’t like being away from mother... she still is rebellious though she doesn’t know it herself... and she grew up quicker than me... I came too soon... there’s just one year between us... she resented me. I never fought against her... I simply stepped back when she got the attention... I accepted it. My aunt saw how I was being left out and she said she wanted to adopt me... I wasn’t adopted in the end... I lived with my grandmother when we were young... until my grandfather walked out on the family.


It’s interesting that Shirley and Frances tell stories with so many parallels. Both involve significant disputes with their respective sisters, both talk about being abandoned (to some extent) by their mothers and both have many instances where they express the feeling that they did not get what was rightfully theirs. DC 

Yes indeed, I sometimes say that is Freud had lived in a nursing home (like Naomi Feil of Validation Therapy fame) he would have learned a lot more about family dynamics and the unconscious than from the hysterics of Vienna. PJW 

‘Writing down people’s conversations’ can also carry undertones of spying on people or interrogation.  This is another parallel with Shirley.  They were both involved in work which implicated them in ‘official secrets’. AC

Frances is displaying her insight into her sister’s character, there is also humour in the idea of someone being rebellious but not knowing it. HZ


 

I had very little connection with my sister until recently... she pushes herself forward now... she’s not under full control... she laughs too loudly. I keep saying to her, “don’t say anything to them”. She wrote to the Houses of Parliament! When we were younger she was very pretty... my mother’s favourite, but she was bolshie.

 


Is there some neuroscientific explanation for the way that ‘compound characters’ seem to be formed by people with dementia?  Different people appear to be associated with each other, so that we get a character who is not quite one person, and not quite the other.   There are several points, for example, where it seems as though Frances confuses Helen – a woman she meets in Prague – with her sister, and even her sister with herself. AC

We are compound characters and present varying parts of ourselves at different times and for different effect, just as we experience life as fractal so our sense of self is also precariously composed of many layers and fragments (as articulated to such great effect by Beckett, Pinter, Joyce, Shakespeare…. among others). HZ


 

She liked to live well and wear nice clothes, and she likes to have the company of men whereas I was always very shy. I was always more interested in taking photographs.

A condition of being here is that I have no privacy... and not only that, my sister opens my letters and I don’t like that at all. I was always independent... I wanted to write a book about life and people who break away... a book called ‘Where the Marigolds Grow’. I started to write it when I was a child and I’m still writing it now. I had it bound in white imitation leather. I kept it hidden from her in a secret space behind the wall.

 


Although I have no reason to doubt that this is exactly what Frances did (I hid coins from my brother behind a lose bit of the skirting) her comment does echo similar things said to me by other people with dementia. Sid, Mabel and Christina said that they could see the fireplace from the rooms where they lived when they were children (including the mantelpiece, clock and ornaments) under the wallpaper or behind the wall. Mabel, Frances, John and others told me that the past itself (or objects from their pasts) were under the floorboards or behind the walls. In each case the past was close by but frustratingly inaccessible, whether it was behind the walls or under the floor. The notion that there is an inaccessible space behind the wall (perhaps outside the field of vision?) reoccurs throughout this text. DC

The continual assault of having a dementia and losing independence, the sense of this as an ongoing process, a steady wearing away of autonomy and  the difficulty of adjusting to this. 

Fairytale sense of something beautiful: in white leather, kept hidden in a secret space behind the wall. Perhaps it was this very secrecy that was most special to Frances, even more so than the book’s content? The impression of having access to something, knowing where it is and being its author does perhaps resonate with what the experience of having a dementia and living in a care home might entail (especially in light of DC’s comment that this echoes what others have said). Does it represent an attempt to talk about a core that remains and that is just out of reach but still tangible? In any case, the sense of a space that exists where no one else can see it, is an interesting way to consider the experience of someone with dementia. HZ


 

My grandfather was a sculptor... perhaps he’s not so well known... he was Greek... H, A, V, I, G, I, S, A, X ... It’s actually, A, X, I ... X, E, ... X, I, ... M, A, N, A, S ... I suppose he was a carver... in Pisa... he had a rather nice house... a palazzo... some important commissions. I went to the leaning tower but I could only go up five steps... I just went up a few steps and then I couldn’t seem to get down... there was... there was the dream... a man on the stairs... a burning man.

 


Presented at this point in the narrative, this dream of a burning man has the feeling of prophecy. AC


 

My grandfather had been very successful... very wealthy. Some of the family were a bad lot and they had all his money when he left the family... he left and took one of his models with him... absolutely bohemian... Italians don’t usually do that to their own brood. They’re exactly like elephants, they have to live in a matriarchal society.

My Grandfather had money... and paintings, a vast collection... that’s what I’m trying to find out, just what happened to it... he left it to the nation but the nation never got it. All the furniture was stolen... his collection of antiques, Etruscan things... he had a studio with all these beautiful things plus his own work... his own sculptures... and prizes he had won... it’s gone.

I did photography for my newspaper... still life, objects on a table, and children’s faces... an English Language newspaper in Cyprus... I should speak Greek but I never picked up anything. I thought it was a good chance to get some experience of the daily running of a newspaper and I was in Cyprus already. It was a disaster. The owner hadn’t paid me for preparing the magazine and it left me in the lurch... I couldn’t pay my hotel bill. The people in Cyprus don’t like to part with their money... it was always so difficult to get the money for the printers. Like all Cypriots he didn’t like paying me... he’s dead now... I’m glad... I don’t have a good memory of him.

Can you hear me? Am I still speaking?


Interesting how she looks to DC for confirmation of reality, for confirmation that she is speaking and is heard. S.B.


I took a flat in Cyprus... where the marigolds grow, you might say... and the children would, even the children who were married, they all go back to mother to have lunch every day... the mother is never free. Like the Italians she’s still cooking and cleaning all her life... that would be crazy!

 


 There’s a strong narrative of escape emerging here. S.B


My family always wondered why I wanted to go abroad... I wanted freedom... a chance to get away from them. In the end I got nothing... mother felt I’d cut myself off from them. One of my carers said that I ran down to the gate... along the gravel track... when my mother came to see me... it’s funny I can’t remember her visiting me here.

I took myself to Rome and Naples, on the cheap. Travelling by train. I remember being bitten by bed bugs in the hotel in Naples. At about 10 o’clock I went to see the manager to complain about the bed bugs. They moved me up to another room, which was just the same. It had the exact same furniture.

 


She seems to be thinking back to all the other rooms she has occupied in the past in order to make sense of this one.  For example, ‘If this isn’t the original Naples hotel room, perhaps it’s the one they moved me to when I complained.  Perhaps because I complained here, I am now in a room on a higher floor.’  There’s no causal relationship between events, only between thoughts about the events.  There are a number of points where it seems that Frances believes that thoughts or words, in themselves, make things happen. All the rooms seem to exist simultaneously inside her head, as though she can imagine her way from one to another. AC


 

I went to Venice, twice... oh, it’s wonderful... especially to be alone. I had boyfriends, nothing serious. Bombs and snipers didn’t scare me one bit, but marriage...! I wrote poems instead. They’re private... Last week my sister read them... I was horrified... she put them all in the bin! She said three times that I was suitable material to go into the mental home.


An interesting link here with how one might describe the conversations she records for her script as ‘suitable material’ S.B


About six weeks ago my sister started opening my letters. Six weeks old ago! My God! Was it so long? Oh that’s a shock. I know I lose track but it’s my sister that muddles me up. She was relating my story to a doctor, an incident at home, she tells my story as if they were hers. I need to be careful who I speak to and what I say.


Again this seems so pertinent to the act of collecting and presenting others’ stories and the ethics of doing that with integrity.  S.B

Two linked ideas here. Her sister now speaks on her behalf; very frequently when someone has dementia a relative will assume the right to speak for and ‘over’ them.  However, Frances has secrets she has never disclosed – privacy and secrecy are constant themes.  Therefore her sister can’t be trusted not to give away Frances’ secrets. AC


 

But, I need to tell you I’m worried. I always thought I had a very good memory. Now I have the experience that a piece of my memory comes unstuck. When I put it back together, other things are falling apart. (See image of the cut up poem. DC)

 


There are many references throughout this text to things being reduced to 'part's (later 'broken biscuits, bed and breakfast etc). Frances gets as far as nearly remembering something and then it collapses in her mind. Importantly Frances is aware that pieces are missing. At a conference of 120 care manager last week I asked how many believed their residents were aware of their dementia, probably 90% thought 'PWD' had no awareness, and this was pretty much diagnostic of (what they all considered to be) the 'illness'. DC 


 

I think I said to you that my grandfather took me somewhere. I think I said it was Prague because... and I... I recognised the buildings because they were so much like the shallow ones opposite... and they seem like part of the story, a part of the past.


This takes me back to the image of the text hidden behind the wall – this linking of language and memory with physical structure and the ideas of building and breaking apart.  S.B.


DC. Shallow?

Not shallow, I mean much younger... more recent... and I wasn’t with my grandfather, it was much more recent... maybe about now, and not my grandfather, maybe you. It’s difficult to explain. The view reminded me of another place when I was with my grandfather years and years ago. Just for a minute I thought it was now. Actually, come to think of it, I don’t remember my grandparents at all... houses back then were very dark. 


It’s clear from what Frances says earlier that she hasn’t literally forgotten her grandparents, though, so I think perhaps what she means is that she can’t form a clear mental image of them.  If you imagine trying to form a mental image of someone (like developing a black and white photograph) and all you get is a dark interior out of which no clear image emerges, this does make sense.  AC

I think shallow is a convincing metaphor for recent. Describing the grandparents as in darkness is also potentially part of the same idea: as things are located deeper (under water, in a hole, in a forest) get less light to them). We all talk about shining a light on things, both as a means of remembering and of making sense of them. If one takes as a starting point the assumption that a person with dementia does not develop a new way of communicating but rather deploys the normal tools, but now to fix things that didn't use to go wrong (at all or as often), then it all makes sense. She does not create new metaphors so much as use ones she is already familiar with, but perhaps she needs to deploy them at times when she previously wouldn't. So, most of us would not need to use a metaphor at all to say something like 'proximal' (the buildings opposite) or 'recent'. But Frances' motivation for using one here would the same as anyone else's: you have an idea in your head and you are looking for a means to express it. You look for the most direct way to refer to it that will capture all of the meaning you need. For non-dementia sufferers, we go to metaphors when we want to pick out particular subtleties in addition to the simple designation. Here, Frances might not be doing that--the threshold has moved, so that she is more likely to not find the word she wants, even when she'd not looking for anything special. So, like anyone else she goes to her toolbox to fix the problem of the lost word (perhaps along with a slightly ill-defined underlying idea, I don't know). Where she'd have liked to use a hammer, she ends up picking up a screwdriver that has a hard end to the handle, and uses that to bang in the nail. It works. 

Somewhat separately, because her choice of word is metaphorical, it creates a level of beauty too. If this interpretation of what is going on is right, it means one should perhaps be a little careful about reading too much into the specific choice of alternative word. If someone bangs in a nail using the handle of a screwdriver it makes more sense to say 'that's a stand-in hammer' than to wonder about the various potential significances of the driver head in relation to nail--there may not be any. 

In my rather prosaic view of what is going on, the bottom line is this-- Frances' priority is to complete her turn in the conversation, and to keep the conversation working. She uses slightly odd words to do that, because they are acting as 'fillers' for the words she'd have used if she could have thought of them. The outcome is a rather poetic, evocative language because we, and listeners and readers, can make our own connections. These are not necessarily connections that she would have intended or made herself. However, having said that, if one asks, would there be a difference in the amount and nature of metaphor used by someone with AD who had written poetry all her life and someone who had not, I'd have thought the answer would be yes. A poet would be someone who had years of practice in looking through the toolbox to see what other tools in it might might be turned to the job of hammering in a nail, and that would mean that some of the choices made in dementia had a history to them. Dr Alison Wray.


 

Session 3

 

Frances’s face and arm are bruised from a succession of recent falls. An alarm has been fitted to her wheelchair to sound each time she gets up. Unfortunately the alarm has developed a fault, causing it to beep and whistle almost continuously. Frances is clearly annoyed by the noise. A number of carers look in. One puts her fingers in her ears and shrugs her shoulders before explaining that Frances’s family are “difficult”.

Frances’s sister has already been asked to leave the home several times as she shouts and swears at the carers and upsets the other residents. Prior to my visit Frances’s sister made a complaint about the alarm having been turned off the previous day, after which Frances got out of her chair and fell flat on her face.

Frances says that I should press one of the buttons on the alarm to turn it off. She takes hold of a button on my cardigan and presses it firmly several times. “It doesn’t work”, she says. Finally a carer arrives who angrily unplugs the alarm and disconnects the battery before saying that “they can’t do right for doing wrong”.


Pushing buttons in various ways seems to continue as a metaphor throughout the whole sessionIt has various meanings, both literal and figurative. AC


(Anxiously) OK... it’s not a radio... it’s something else that talks all the time... we had to listen to it... but my sister said nobody listens to it... it beeped. The man... I suppose he was showing off... he got up on the chair and pulled the plug... very brave... he might have been given a shouting-down... I think I was being watched.


This sounds as though it may have been a tannoy system; possibly a source of propaganda. The memory of the man who dismantled it, must have been triggered by the member of staff ‘bravely’ - in defiance of Frances’ sister - unplugging the alarm. AC


When I was younger I was only interested in books and writing... now all I do is drink tea. I’m wasting away... wasted labour... Labour party. You lose that sense of yourself... you don’t have you anymore... you have somebody else... you lose your beliefs... pushing in, my sister.


‘Pushing in’, and ‘squashing flat’, a bit later on, could both also be connected with the button-pushing metaphor, but here more in the colloquial sense of ‘pushing someone’s buttons’ as controlling or manipulating them. AC

There are many examples in the archive of stories (particularly from people with moderate levels of dementia), where there seems to be several layers of language in play at the same time, (a double-tongue). Some people might continue to use metaphors linked to the same imagery (pushing buttons etc) throughout a session, like an unconscious undercurrent beneath the conscious flow of speech. Some of these people might not remember having breakfast two minutes after eating it but they continue to tap into the same metaphors throughout a one-hour session suggesting that at some level the source material is still being stored or processed (to a reader it probably seems like deliberate wordplay involving rhyme, resonances and repetition). Stranger still, rather than being metaphors and images from the person's historical grab-bag, some are clearly being improvised using something observed in the care home even a photograph in an open magazine in front of the person before we started the session (i.e. what was at hand). DC


People get fed up with themselves, and fed up with life, so you go along with it. You play the part of the decrepit old woman.


This is really powerful. When we act and are conscious of doing so we retain some power, I think. To me this is a statement of defiance – ‘I might look like an old woman, but I’m just playing the part to fit into the world’. Though on the flip side, this could also be read as disempowerment and entrapment, if that’s a role we’re forced into.

I’m very interested in her shifting sense of herself, and how that’s linked to the idea of a script, a play (as she states explicitly at the end of the paragraph), and also to this idea of ownership and power – what is lost, what is given. S.B


 

My sister squashed me flat... she’s taken everything. She’s bought me twelve summer dresses. I told her, there’s never any reason to own twelve dresses!


Frances's sister was a rather frenetic, domineering and often-impatient personality. I can totally understand how Frances (who was slight and usually in her wheelchair) might feel that her sister was 'pushing in', in terms of taking over her private time (she visited almost every day and stayed for most of the day, until she was asked to come less often), taking over responsibility for her day to day affairs, and in terms of physically dominating the small amount of space Frances had to herself. I'm sure Frances did feel 'squashed flat' - in the sense of diminished - after all Frances spoke in a whisper and was almost static whereas her sister yelled and tended to rush around. Frances sees her enforced loss of independence (by her sister taking over and the routines of the care home environment) as being the cause of her current problems (of which dementia may is just one). She seems to have no real sense or has not accepted that her physical problems and her dementia (if she’s aware of it) came before the loss of independence. She clearly thinks that the current situation and her sisters presence is making the situation worse. 

I can also accept that the feeling of being squashed may tie in to a broader worry about her identity and memories slipping out of her room like air from a balloon. DC


What I used to like was to go to Fenwick’s. They had a little table... a desk with a few chairs. Just a woman enjoying herself for a short time... looking at things she couldn’t have.

I left home when I was 16. I was living in a bed-sit. No furniture, just a bed. I was given a small allowance by my father, which put my mother against me. I wasn’t her favourite, not by a long chalk. I’d been learning shorthand for my journalistic hope... my mother stepped in to put an end to it. She asked me to leave the family home a week after my father died.


There’s possibly something more important here about the feeling than the actual order of events, since it’s clear that Frances’ mother didn’t literally put an end to her career as a journalist. AC


I can tell you today, my mother went in a similar care home to this one... I don’t like the fact that we put her away... so I’m denying it. She didn’t survive long. She cried when she moved into a care home... I cried when I moved in here. This old body, we should throw it out the window.


One of several instances of double-speak: ‘I’m telling you, but I’m denying it’.  There’s also a parallel with the previous paragraph -  Frances’ mother later having to leave the family home and go into a care home? AC


Apparently, when you move into a house in India they introduce cobras to guard the house. An occasional cobra isn’t such a bad thing.


Given the last sentence in the previous paragraph re ‘this old body’, I wonder whether what is implied here is that a cobra being a poisonous snake, it would be better to die by poisoning that to continue living here. AC


I took a flat in Cyprus... I did photography for an English Language newspaper... still life and objects on a table, and children’s faces. It was a disaster.


 

It’s just struck me how often Frances refers to her table – something I half recognised but didn’t think much about. I did a search in the text and she talks about sitting at tables six times. Given that room 21 was pretty empty (a bed, a wardrobe, a TV, and her table – where she sat looking out of the window), I wonder if the table itself is as much of a thread connecting times and places as the sights and sounds of the care home and room 21 itself. Frances faced away from the door so it seems likely that some of her triggers probably came from what she had in front of her, or from the view out of the window.

The table was always cluttered, even when the staff tidied it there were piles of chocolates, diaries, a phone, handbags, make-up, a small mirror, handkerchiefs, bowls of jewellery, letters and diaries, two radios (which I completely failed to notice until I looked at the photographs) and sometimes a couple of bottles of wine. I can’t help but think this might be where she’s getting the repeated trigger for ‘still lives and objects placed interestingly on a table’. She refers to exactly the same thing in Cyprus (session 3) and in Prague (session 4). I also find it unlikely that Fenwick’s would actually have a desk (session 3), which she also refers to as a table. If she is referring to the view from room 21 when she talks about looking at things she couldn’t have it may well relate to the freedom to go outside (she mentions in session 4 her frusration at having 'her liberty curbed').

I’m intrigued by the sequence of comparisons in section 3.

When Frances describes her bed-sit “No furniture, just a bed”, she follows it with a comment “My mother went into a similar home to this”, suggesting that in the original reminiscence she was actually making a comparison between room 21 and her bed-sit when she was forced to leave her previous home. This comparison is then followed by another reference to ‘still lives and objects on a table’ this time in Cyprus, where she makes a passing comment to ‘arriving penniless with lots of smart clothes’. I presume these references also relate as much to now rather than then (maybe connecting to the fact that her sister bought her twelve summer dresses). I now wish I’d photographed all the objects in the room! DC


I was in Cyprus when the invasion happened... when the green line was drawn up. I lived at the Hilton Hotel... with a huge red cross on the top of it. A Turkish soldier told me to walk close to the walls because of the snipers.

I arrived here penniless but with plenty of smart clothes.


Several different ‘arrivals’ seem to merge here – possibly a present day reference back to the 12 summer dresses bought by her sister. AC


One of my friends was shot at... by the CIA, I think. There was a lot of that kind of thing at the time. Anti-Jewishness was to blame... I read it in the papers... in small type, not big type now. She was married to a beefy obstetrician... she didn’t collude, despite what they said.  I can’t remember who it was. Jim, my boyfriend, he’d know. He said it could only be America behind it. America anciently built this structure and she still wants to press all the buttons. I say 'she'… it’s not a she... not in this case... it’s a... and the trouble in Syria... 9 – 11. I'm lost. I wanted to tell you something important... that... oh, I’m forgetting.

 

Session 4 “This is Radio Prague”

 

Can you hear me? Am I speaking now? Am I awake?

I was there, an eyewitness... more or less. I put everything in the script… sort of reports from the frontier, where they shot her, everything. Someone else made the introduction, “This is Radio Prague... English Language section”, then I say my lines.

Some people said I could come here and talk about subjects I liked, but it was all propaganda... I wish I could make myself understood... it’s all... broken biscuits... These memories, they’re... still life... nothing more than parts.... bed and breakfast... strange items placed interestingly on a table. Is that right?

 


Frances seems to be making a connection between her still life photography and the current state of her memory – fragmented images.  She made reference earlier to having photographed items on a table.  The phrase still life becomes very interesting in this context, ie ‘This is after all still life, of a sort?’ or ‘This isn’t really life because it’s taken out of context and frozen in time’. AC

  This layers onto the mention of ‘still life’ in session two: “still life, objects on a table, and children’s faces” and brings out the multiple meanings – this is ‘still life’, or still life as a noun. Both uses make me thing of fragmentation, of the sometimes random putting together of things that constitutes life.  S.B

There is a quality in this narrative that suggests more is being left unsaid than is actually being said: Not to want to say, not to know what you want to say, not to be able to say what you think you want to say, and never to stop saying, or hardly ever. Rather than see language as a smooth path towards self-expression she experiences numerous irregular bumps and knots, which cut away at her original intended thought.

Frances moved into room 21 with a file containing about thirty poems, each of which had been cut up and reassembled many times, so a line written about a café in London in 1940 might follow a line or an image originating in Prague in 1968. I find myself increasingly convinced that there must be a link between the content and structure of her story and this process of moving around memories located on fragments of paper. 


I’m so sorry, I do ramble on... I’m looking for the script. It’s still rough knitted... coarse reads. Reeds? Like the grass you find in Russian marshes? Is that right?


 Another beautiful word association riff, like she is rifling through words and meanings to try and fix her intended meaning. S.B


Who am I talking about? Jan Palach? I seem to remember his funeral... going underground... 


Several references to (going) underground in this session – again with different shades of meaning:  being buried is going underground; the underground resistance movement, and the caves where the dissidents met. Liminality again here – it also figures back to Frances’ comments about things being ‘deep’ or ‘shallow’, and some rooms being underneath others. AC


“Yes”, he said... “I don’t hang around”... He said, “let everybody know, but be careful what you say”. 


He said, “let everybody know, but be careful what you say”. - Another instance of double-speak, and this seems to be putting words in Palach’s mouth that are quite different from his actual message. AC


He was the most beautiful boy... with a lot of talent. He’d put together a book with pages... and on each page he painted a bird... in alphabetical order. It was beautiful... a child’s thing, but they’re all treasures now. Who am I talking about?


The bird painter sounds like Audubon, but I can’t for the life of me think what the connection would be, other than – as mentioned before – that it might be a merely semantic confusion with Dubcek. AC


It’s my sister that muddles me up... no diplomacy... she worked for U.N. I keep saying to her, “Don’t say anything... people spy”. She laughs too loudly. She tells my story as if it were hers… over and over… “Do the remember the boy who set himself on fire? Do you remember Helen?” In the end I couldn’t see which story was hers and which was mine. I called my sister... no, my sister called me... she called me a commie.


I wonder if Frances’ sister has been trying a form of reality orientation with her – getting her to rehearse these memories as a way of proving that her memory problems aren’t serious?  It’s something that relatives often do.

Here and elsewhere in her testimony Frances seems to explain her forgetfulness by telling herself (and / or me) that she is keeping quiet in order to protect herself or more likely that she thinks that there is a risk to being too open. Just as Frances compares room 21 to previous rooms in which she has lived, she also links her reduced privacy to previous situations in which she believed that she had to be careful about being seen or overheard. It’s curious that from the outset Frances was so open when talking to me – perhaps she sees me as an outsider? She clearly sees out relationship as different to her relationship with the care staff. AC

 Again interesting in relation to the act of collecting and retelling stories.  S.B.

She suggests that her loss of privacy or independence (her sister opening her letters and reading her poems, the need for observation in the care home - due to Frances’s increase in falls etc) has some link to her current problems with remembering and word finding. 


I worked for the state radio in Prague... I breathed their air... and what they got into trouble for. Not much protection for them and not much protection for me. I read articles on the radio. They wanted a new voice... I had no training at all and they... they took me, and I spoke into a microphone... no one told me how... but they said it was very nice. I made a connection with the people... no one told me how... but they said it was very nice.


The previous paragraph can be understood as relating to her current situation (being interviewed in a care home) as well as her experiences in Prague. 'And what they got in trouble for', is curious. I suspect this may relate to her anxieties about now and what she thinks or imagines might happen to her, as much as then. What is it that she feels she might 'get in trouble for' now? It can only be something she might say... or is she anxious that something she did or said in the past might catch up with her? Has she cast me as a character in her spy story? Is this about passing on secret information?

Last year I received an email from a friend of the art critic and writer John Berger. As mentioned later in the story Frances knew John in London and mentions staying with him in Prague: "John assures me that Frances, is telling the truth.  Sometime in the '50s he rented a large Victorian house in Swiss Cottage belonging to Anya Bostock:  4 Nutley Terrace.  He sublet a room to Frances.  He describes her as 'farouche' (which can be fierce, wild, savage, or  shy, timid, unsociable).  But he also said something about her being like someone out of a spy story, or wanting to give such an impression. He also met her in Prague, perhaps before his 1968 visit to Dubcek. He remembers that one night she slept on the floor under his desk during a curfew."

Frances began to 'lose' her voice at much the same time as she started to have problems with her memory. Throughout the sessions she spoke in such a barely audible whisper that she needed to use a headset microphone and amplifier in order to be heard.  Frances and her sister are strongly contrasting personalities. Frances is rather shy and her sister is out-going and confrontational. ​Frances speaks in a whisper whilst her sister is very hard of hearing and tends to shout. 

Because Frances is talking about talking she seems to flip between an idea that she is talking about her current experiences or reminiscing about her past. DC


The Czechs were defeated. I tried to add secret messages to the script... “Czechoslovakia will always be free”. I had to muddle my words. It seems now that I always wanted to be angrier than I was, but they treated me too kindly...


This is very poignant. It feels like a very strong statement couched in soft terms (which mirrors what is being said). S.B



my sister said someone needed to die before I get a room. It seemed strange then and it seems strange now. I said I’m not a communist, and I don't speak Czech. They said that it didn’t matter... the gardens are beautiful. It’s a nice place to die and the food is cheap!


Here it seems as though inducements Frances was offered in order to work for Radio Prague are woven in with reasons for moving to the care home.  I wonder if Frances took over the job of someone who had died or been imprisoned.  This would account for the link with someone needing to die before she got a room, and ‘a nice place to die’. AC


I wanted someone to hide behind. When I was working in the Embassy we always thought about how much the CIA was involved... how deeply it went. 

I think I’ve prepared two scripts for broadcast, 21... now what was it? 21... 21 Radio... 21 Days in Prague...


Room 21? AC


Who am I talking about? Dubcek? Jan Palach? They said let everybody know but be careful what you say.


Presumably it means ‘speak in code’. AC


Helen gave me my first room in Prague. We were watched... I gave her messages hidden in bars of soap. I never asked her too much about what she did in case they’d think I was a spy... she got me this room in the blue house... she said she knew a family and, well, the funny thing was that she said Czechoslovakia was free, but she’d already been in prison... her identity card was stamped with that. She'd smuggled a priest out of Czechoslovakia... he had his papers hidden in a bun. (‘Bun’ seems unlikely?)

She couldn’t attend the meetings because she’d had all these problems... she got some kind of meagre allowance... but... her sister had fallen in love with a Russian officer... Helen was not happy about that... there was nothing she could do about it, and she loved her sister, so she didn’t make difficulties. I think she lodged with the woman, I’m not sure... they had two tiny rooms with a partition between. More people and smaller spaces... making the flats into units... it’s fine, but... it makes it smaller. Oh yes, for a long, long time I was very pro-socialist... I still am... I’m very anti people who have too much space. That’s what I thought, that the whole system was bad from atom bombs to the Duke of Westminster.

So how did it come about that I’m here again? Was I arrested? So how did it come about that... that I’m here? I broke my legs... was I arrested again? What was I doing? (whispers to herself, “setting fires?”)... I had a fall... I fell... I’m trying to think... some people said I could talk... about subjects I liked but it was all propaganda... I wish I could make myself understood... I was told not to be too bold. It was an American, a communist I think, but she told me not to be too bold. Some parts of history are deliberately forgotten.


Reasons for being here (again) are taken from other people’s stories as well as her own – it may be because she was arrested (like Helen) or because of setting fire/s (Palach).  A spot-on reference to social amnesia at the end! AC


I dreamt about all of this last night... that I’d gone back to see them... and I saw him standing there, wearing an old C&A coat I’d left behind for them... English clothes from Oxfam shops... they all had the dreadful local clothes... all the same colour until the dye ran out. In my dream I saw him coming towards me... and they were my clothes, my C&A jacket... and they were on fire... and I ran and ran to a tiny... square... Wenceslas Square. It was so... so shocking. 


This is exactly the kind of thing that would come back to you in a dream/nightmare if you’d seen somebody set fire to himself.  A truly dreadful image. AC


Try as I might my voice always sounds sad on the radio... I wanted it to be more bright... more bright and... bright... to tell people that... that... oh, I’m forgetting... that’s what the neurologist said... that it’s a nervous condition, the forgetting. He said the signals won’t get through... they haven’t been clear about the future and how long it will take to get better. It’s coming back. They said... the head of all these people... she was a great scholar... tall girl, beautiful... (they said) “You’re going to get in to trouble”... (whispers – “help me find my way home”)


Diagnosis and interrogation are associated with each other here. AC


... I said it was no more than sightseeing... taking pictures of the castle... my voice must have said something else... oh... the voice... tried to say... I’m afraid I’ve lost my voice... can’t say. I can’t make the connections. I was always surprised that I wasn’t taken away and beaten or raped but I wasn’t... one has to be careful in case one isn’t whisked off and given an interrogation... or told to be quiet. I should tell you, I don’t remember this place at all.

Oh, I’m not at home... I’ve just seen I’m not at home. 

It’s very difficult to remember. I know I’m being... was being, watched. I was at the bus-stop... and the man was following me... and as soon as a tram came between us I ran to the building opposite... a café... and I went inside and out the back through the bathroom window. He wanted to make some contact and he was willing to risk it. I ran into the building and took the lift up here... I tried to put some people between us... I don’t think I could do it now... I’d need to take a carer.

There’s people following you and watching you... yes, and I’ve never had my liberty curbed... it’s wretched. I have to have my door open all the time.


A risk assessment associated with surveillance. AC

Interesting in relation to her suggestion in session one that ‘if you close the door it might help me to remember’


I’m really not sure what wrong I’ve done. There was an incident where I had to stand in the bathroom for ages because a man was watching me, ah... an incident this morning... or last week? i have to have my door open all the time. Somewhere there’s a mix up... he wanted to give me a wash with soap. I don’t think I’ve got it entirely right. I think they took me for a spy.


Having now read this section repeatedly it struck me that she may have said 'a man was washing me' rather than 'watching me'. As mentioned previously Frances often spoke in a whisper. Even with this possible error there is still the implication that being washed was a punishment for being a spy. Later on she mentioned that Helen got neuraligia from water dripping on her head which seems unlikely. 

I always wondered about Frances's voice. Occasionally she would speak loudly and clearly, so there was no physical problem. Her Parkinson's definitely affected her speech - there was very little intonation - however it does seem to tie in with her anxieties about being spied and keeping things secret and not being overheard. 

Could be - or maybe it's another example of the sliding of meaning where it starts out as watching (ie she's hiding in the bathroom) and then segues into washing, or it's both simultaneously.  I agree about it being experienced as a punishment.

I think political prisoners were often kept in cells that prevented them standing up properly or stretching and meant they had to adopt uncomfortable positions for long periods of time so that, coupled with dripping water, could cause long term problems. (There's an account of this in Helen Dunmore's book The Promise). AC


I remember (in Prague) there were caves where you could go deep underground... meetings of young people in the caves... they had their own life there, the students... hanging signal lights in the trees... we would meet after work... the underground press... I was involved in a minor way... I produced pamphlets... Helen had a printing press... it was... and, ah... a risk... more for her than me... if... if the authorities were to have found out I would have been deported... she would have been killed.

Helen took me in and sized me up... she had a long miserable time in prison... a damp miserable cell... it was cold and she got neuralgia from the water dripping on her head... she was only 19 when she went into prison... a very innocent Catholic girl... not experienced in life... I didn’t like to ask her about it... she was a very pretty girl... beautiful in fact... she was so shocked... after that she never married and never had a boyfriend... 6 foot tall and beautifully slender... she only got a job sweeping the streets and even then they didn’t want her... she lived in a building where they kept released prisoners... men who were sad approached her and offered her a bed.


Does ‘I didn’t like to ask her about it….she was so shocked…after that she never married’ coupled with comments about Helen’s beauty and inexperience suggest that she was raped or sexually assaulted in prison, I wonder? AC


The government tossed her out of her job... she was extraordinarily beautiful... I’m still in touch with her... I went over last...  (Long pause)                                   or was it two years ago? 1970, around then.

I once thought I saw her here on a bus in Knightsbridge... she was rather embarrassed... I don’t know whether it was true or whether I imagined it. I was standing there and a lady came and leaned over the bar... I looked at her, a filthy look, she was in tatters... (Interesting semantic shift here ‘I gave her a dirty look/she looked dirty’.) and she hesitated, and she looked at me... harsh words were exchanged. She had a baby to a Russian soldier. Eventually he shot...                she came into the shop... and he stood next to the door... and he shot her dead. Then he shot himself. He wouldn’t let anyone have her. It’s a good thing he shot himself.


Earlier it was Helen’s sister who fell in love with the Russian officer. AC


I spent six months in Prague... working for the U.N. in 1968, 69, writing a book about... oh, the usual boy girl stuff... I never finished correcting it... I’ve written over it... always one way, then another... a code... I started and restarted it a million times. It’s a fantasy... I saw it as an escape... somewhere nicer... a place you can keep in your mind if you’re in prison. I need to sort out where that place is for me now. I kept it for such a long time and just last week my sister tore it up.


Reference to ‘writing over it’ and ‘a code’ are interesting in connection with DC comments, about Frances’ cut-up poetry.  The boy-girl fantasy is in stark contrast to the real-world story about Helen (and/or her sister) and the apparent violence involved.  Frances seems to be aware of this, but her reference to it being ‘a place you can keep in your mind if you’re in prison’ is odd – do we know for definite that she wasn’t ever in prison herself? AC

 

An interesting correlation between the act of writing, and creating a narrative, as offering the possibility of escape. S.B


The people here keep changing the story... they move the furniture making it less and smaller... putting up panels. The small table where I write the daily reports... it’s gone behind the wall.


To play devil’s advocate briefly – and this may be a question for Dominic – when I first became interested in what was still at the time called ‘senile dementia’ (in the 1980s), differential diagnosis involved the exclusion of a condition known as ‘late paraphrenia’.  This was a diagnostic category characterised by a single delusion in an older person, usually a woman, most often living alone, and often with a sensory impairment.  The single delusion usually took the form of a conviction of being persecuted by neighbours who were talking about the person behind her back, hiding or stealing things from her, and moving objects around in order to cause accidents.  It seems to have dropped out of the diagnostic manuals now? AC

Story is linked directly with space and architecture. We return again to this idea of a story (or in this case the means to writing the story) being hidden behind a wall. There is something as well to do with power – who has control of the story and of the space. S.B


I think a lot of my words are... are all going... in bits. Just last week my sister put them in the bin.

I’ve lost myself...

I went for a couple of nights but now it seems like forever. I had a friend at the UN... she said that there were places that were so poor that they couldn’t even buy soap, Yardley’s... she wanted to buy a Christmas present for Helen... a gift the she could enjoy using... a bar of soap wrapped in Christmas packaging... I gave her what soap I had. When I came back to London I bought some soap and took it over and she was thrilled. They used to make the soap from rendered animal fat, which smells bad and isn’t so nice as a gift. There was great joy that I’d given her three bars of soap. It’s funny, I get fed up with soap for Christmas... so that’s soap. So that’s...                     soap...

Is that what we were talking about? There’s something about soap that still needs saying... a man came out of the dark and asked if I needed a guide... a helping hand... an old fatherly gesture... and in his hand he had a bar of soap... and it remembered me something I wanted to say.


Soap does have all kinds of symbolic connotations; washing things away, ritual cleansing. AC

Frances was in a pretty good care home where the carers were given clear instructions to promote independence, particularly in relation to skills of daily living. Specifically they were told to ‘step back’ and ‘help when necessary’ but ‘encourage the person to do as much as they can for themselves’. I think what may have happened is that Frances has been ‘assisted’ to have a shower (a fatherly gesture / helping hand). From Frances perspective this probably felt like she was being observed while having a shower, which she was. She then tries to process and make sense of this experience (to make it part of her psychological story) and it ends up being fused with the increasingly pressing experiences she had in Prague. DC 


I’ve forgotten what I’m talking about. You should start, “This is Radio Prague... English language section”.

 

Session 5

 

Frances is in her room. Unlike the majority of other residents Frances’s furniture faces away from the door. Her desk and chair face the window through which she can see a busy little park. Frances has recently told a nurse that she can see monkeys, parrots and other zoo animals in the trees outside and on her windowsill. When questioned by the nurse Frances says she knows they are not real.


As mentioned before I was in touch with a woman with dementia who saw animals, and particularly animals’ faces, in pictures of other things.  It strikes me that it might just be way of keeping yourself entertained, like people in pre-TV days used to see pictures in the fire, or the hidden animals in Arthur Rackham’s fairy tale pictures.  There was a kind of puzzle in puzzle books for children that was about finding hidden objects.  Cath, the woman in question, had been ill a lot as a child, and I think she had got used to having to make her own amusement. AC


This room is my poem. (Beautiful! S.B) The people here keep changing my room. My sister tore out the pages... making it less... putting up panels... making the room smaller... I was furious.


The idea of a room as a poem is very interesting. Poetry does have an ability to contain, and a structure that might be likened to a room. The disturbing sense that Frances’ room keeps being changed, her lack of control over this she parallels with her sister’s intrusions into her private world of writing. Frances seems to feel that the room is closing in on her, perhaps echoing her. HZ


PEOPLE KEEP THEIR SECRETS BEHIND THE WALLS. They come in the night to stage it so it looks real but it’s not real. Every night there’s less. The small table... I wrote it, and now it’s gone behind the wall.


It seems as if Frances is trying to disentangle what is real and what is not, the sense that things happen in the night, are ‘staged’ to look real and that there is gradually less. She perhaps wrote to try and understand and control aspects of her life and now this has ‘gone behind the wall’. Frances’ language is condensed and poetic, ‘Every night there’s less’ would make an effective opening line to a poetic meditation. HZ

Again these relations between furniture, space, story.  S.B

It may be that this is simply not the table Frances thought she had, either because she is thinking about a table in another time and place (she frequently refers to tables in Prague, Cyprus and elsewhere) or because the care workers have actually given her a different table, or that the height feels wrong because she is now in a wheelchair. DC


When I have this trouble... this... words... this new innovation... I don’t know how long it will go on... I was a nervous wreck...


This phrase is like a line from a Beckett play, using tautology (new innovation) and apparently disjoined but actually expressing a number of ideas quite economically – the loss of words and feelings of acute anxiety about this loss. HZ


Strong connection between privacy and identity.  What is public/common knowledge isn’t part of the inner self any longer.  Ability to hide aspects of ourselves that we would not choose to reveal is lost with dementia (is this one of the reasons why it is considered so terrifying?  What if we couldn’t lie anymore?) AC


The Italians and the Moroccans at the UN (there is an Italian and a Moroccan carer on duty on the unit)... “Watch out! You’re going to fall”... that’s what they say... I broke two legs and an arm... they put the idea in my mind... The idea makes it happen... I fell in this room... lost the words... R, E, U, P... I must have good bones... no repercussions... some pain... my arm... I don’t fall as much now... I fell... an up... (Long pause) How do you pronounce it? R, S, S ...


Despite the problems of falling the loss that Frances seems to experience as most difficult is her loss of words. HZ


My sister is dance... she dances into the party... 


Unusual poetic metaphor: ‘My sister is dance’ although this is then overlaid with ‘she dances into the party’ the vivid image of her vivacious sister is powerfully captured her. HZ


I was alright until I was six years old...


Humour of this – it is apparently a throw away comment but is also very important to Frances’ construction of her life-story. Frances seems very aware that by telling her story she is entertaining the listener and re-inventing herself. HZ


I could move my arms and legs, it’s true! My old mother... I took myself to a psychiatrist... I walked into the room and she took one look at me and said, “I know your mother. Get away from your mother or you’ll have no life”... I became more introverted... very shy... a long period of shyness. I lost my voice... my mother fell in love with someone else... she used to... she... oh, I’ve forgotten... my father threatened to take my younger sister... she backed down... families floating apart... you have no funds if your family don’t support you... my mother cut me off... by the time I paid the rent and bought cheap clothes... clothes suitable for a dance... I had nothing but bread and milk.


This section (starting with ‘I was alright until I was six years old’…) reads like a short story or piece of ‘flash fiction’ in which a lot is communicated economically. The visit to a psychiatrist, a life dominated by a difficult mother, a father who threatened to take her sister. The fragmentary way in which Frances relates this personal history encapsulates the impression of things ‘floating apart’. The language that Frances uses and mode of communication reflects the difficult subject matter and also may demonstrate ways in which people living with a dementia reach around to try and grasp at concepts and subjects that are not any longer as accessible or easy to communicate. There is an arresting honesty and directness to Frances’ stories. HZ


You lose yourself a lot... is it old times again? I can’t figure it out. I had a temporary job... temporary jobs were always busy business... Lance’s Tea Rooms... Marks and Spencer’s... I got called for an interview... I had language and... happy about that... and I had tea... but I didn’t get the job. I need a job. I’m looking for temporary work. Something in arts publicity. I considered opening a newsagent. I edited publicity for the Hilton magazine in Cyprus... working at the hotel... stuck on a desert island where they’re cruel to cats... cruelty to cats... despicable... the cats taught me how to scavenge... I took them some food... the kittens... and the mother... she spat in their face three times... three times! They didn’t expect it... they had to learn to fend for themselves... I welcomed them in and gave them food and shelter... bread and milk... I put bricks on the floor so they could climb up onto my window ledge... it’s unexpected for a mother to spit in your face.


Apparently this is what mother cats do to wean their kittens, particularly feral cats. AC

I can’t remember my initial question, or whether there was a question to which the previous flow of words connected. Frances began to be more obviously frustrated by her circumstances and her sister’s daily visits around this time. These periods were always combined with a struggle to make sense of what was going on around her and an anxiety that decisions were happening behind her back. (Which they were)

Frances repeats the idea that words disappear out of open doors and behind walls as if they were physical objects. (The cutting up and reassembling of poems seems relevant again). There is a strong link to the philosophy and practice of surrealist poetry.

Frances talks about her words disappearing out of the door or under the wall, I'm sure that this must have some link with her moving around individual typed lines on scraps of paper. The idea of a memory being located and retained only within its physical documentation, and in a tangible physical space on a fragile, yellowing scrap of paper, which then might fall on the floor or be carried off on the bottom of a shoe, it's seems very curious and very compelling. DC

This image of a mother cat perhaps echoes Frances’ difficulties with her own family. Powerful sense that she learnt how to scavenge from the cats – echoes ideas that JM Coetzee explores in several novels about what humans might have to learn from animals, the uncomfortable proximity between human and animal life. Coetzee is partly curious about human ageing and the extent to which we might become closer to animals as we age…? HZ


I used to live in Naples... it was terrible... here I have the best view in the world, I can see Tesco’s. There are no Tesco’s in Naples. (See Tesco’s and die!! AC)


She repeats the idea that words disappear out of open doors and behind walls as if they were physical objects. (The cutting up and reassembling of poems seems relevant again). There is a strong link to the philosophy and practice of surrealist poetry.

Frances talks about her words disappearing out of the door or under the wall, I'm sure that this must have some link with her moving around individual typed lines on scraps of paper. The idea of a memory being located and retained only within its physical documentation, and in a tangible physical space on a fragile, yellowing scrap of paper, which then might fall on the floor or be carried off on the bottom of a shoe... it's seems very curious and very compelling. DC


 

Session 6

 

This room... this is the third move I’ve had... I was in two different rooms... different floors... the same... place... same table... same bed... even my pictures. They’re very quick... I don’t remember the move. The same tops... to the bed... to the chair... the same profiles. The lamps are the same. Same shadows. Part of the move is economic... the lights don’t throw out a lot of light in the way they did... it’s dimmer. It’s done to convince me that I’m demented.


Again Frances’ is acutely self-aware, her eye for detail is writerly – she mentions the ‘same shadows’, which might be both literal and metaphorical. She hints at the extent to which ‘dementia’ might be an external condition too. HZ


I don’t remember moving but I know I’ve moved up. They say I’ve not moved. All the rooms are the same. Why are they doing this? Why are they putting me through it? I’m beginning to doubt my own faculties.


This is so close to her experience in Italy when she asked to change rooms due to the bed bugs that the two must be connected. DC


I spoke to people through the fence... to people in detention camps.

I did nothing wrong... even on Lenin’s birthday, they said they wanted an English voice... they didn’t mind. They said it wasn’t propaganda. The moment I arrived back in England the landlady would arrive back from Hastings... she said, ten days or a week supervising house repairs. I’m not so sure. As soon as I got back the phone would ring and it would be the C.I.D. They knew my name. I answered some silly questions... next time I came back it happened again. I was being watched. It turned out that the basement flat... I could go down into the basement, through a secret tunnel, and come up in other houses to escape. I went to my M.P. I said I’m sure I’m being followed... and my phone was bugged... I was very cross with it... my aunt called me a commie but it was becoming more than a joke... they cut me off without a penny. When I came back my M.P. told me not to answer their questions. It was sometimes very difficult to say what was safe and what wasn’t. They said I was in cahoots with the communists. I knew there were people following me... plain clothes police... C.I.D. I thought I was being observed one day... I was waiting for a tram... I spotted him... he may have just fancied me... I dodged into a large block of shops... I ran... I saw him run too... I went to a high place so I could look down... somehow I lost him in the crowd.


I’m fascinated by the architecture / the space and movement in these stories. I’m less convinced that it always relates to a physical space so much as a similar space in which we move in dreams. Frances and Shirley both talk about memories of looking down on or surveying a situation from a higher vantage point (climbing a tower, escaping up high). It also seems similar to the descriptions of people when they are asked to recall a ‘first memory’, i.e. they often talk about being able to see themselves from above (often running away on the first day of school). One nurse told me that she remembered watching herself run home as if she were up a tree, which was in the school playing field. Since the person could not see themselves I think we can speculate that this is evidence of a story which has been processed and revisited several times.

It's very interesting that both Frances and Shirley talk about something under the floor connecting rooms together, for Frances it's a tunnel, for Shirley it's a river. 

DC


I made these broadcasts back to England... specifically for England. I had the experience of going out and coming in and going out again... back to England. I saw how hard it was to get out and how hard it was to get back in again... some people were trying to escape the communists... there were quite a number. Bureaucrats don’t care any more about people. People vanish and you have no idea what happens to them.


 

'People vanish and you have no idea what happens to them.' - This reminds me of something a care home resident said to me; 'People disappear when they come here. You make friends, have breakfast together and start to get to know someone, and they disappear and no-one talks about them again.' I'm sure Frances is talking once again about her frustrations, seeing life going on out of the window (the view of Tescos) and not being part of it. It links pretty obviously to the disappeared as people who have been secretly abducted or imprisoned by the state. There are times where she either sees herself or choses to tell a story in which she is a political prisoner (like Helen). DC - 

 

People with dementia as the ‘disappeared’ is a very good analogy, in all kinds of ways.  I know some people with dementia who set up their own support group around ten years ago, and part of their narrative about it has come to be how many original members they have ‘lost’.  I assumed they meant people who had died, but then found they were using the same term if someone had gone into a care home - as if it was tantamount to being no longer of this world. AC

 

The phrase ‘Bureaucrats don’t care any more about people’ echoes a line from Trevor Smith’s play ‘An Evening with Dementia’ which similarly questions the increasing lack of humanity in modern life. The protagonist of this play says: ‘We’ve lost the memory of our humanity’. HZ

 


Oh dear, everything confuses me today. I thought I could hold a speech therapist session. This 106-year-old woman... I was just going to speak to her and she died on the spot. What am I talking about? Oh dear, I knew a woman who was getting muddled like this all the time... I couldn’t stand it... she’d been a very good friend... she was a burns subject... a doctor... she’d been through fire. She was with me when the young lad set himself on fire... a futile gesture. She was the first on the scene. I knew him from his photograph... before or after I can’t say. I couldn’t have the patience with her... normally I’m very good with people who are sick but in this case I couldn’t stand it.


Before or after I can’t say (!)… she seems very aware that her story is a reconstruction. That she is actively working to assemble the story and consciously putting together disarticulated fragments some of which she’s unsure about (in time). I can’t remember the quote but she talking about jotting down other people’s comments and putting them in her story. DC

This is fascinating – and I wonder if she is talking about herself. Again there is the imagery of fire – the woman going through fire which then morphs to the repeated image of a man on fire, except this time he is young and has set himself on fire.  S.B


I went to a school in Switzerland... boarding school helped me... it got me away from my family... the trouble was it didn’t set me up for work... I had no direction... I used to hang around Charing Cross Road and read books and talk to people I met in the bookshops.

 

Session 7

 

Frances has a hospital appointment. A nurse tells me that Francis has been having frequent hallucinations. “She complained that there were snakes in her room at night”. Sitting with Frances after her hospital visit. She repeatedly picks up objects from her desk, handles them, stares at them, and puts them down. There are long silences between many of her comments. Without being prompted, but perhaps associating me with the act of telling the story, she begins to talk about her time in Prague.

 

Last week a cat jumped through the window and stole my pens.

You couldn’t have anything to yourself... I remember.

The unprivate room... a poem with three doors

 


An extraordinary image: doors, privacy, memory, poetry. S.B.


A bottle of was

Paul, my American friend... he said, ‘You can stay... sleep on the sofa’

He paid for the hot water

1968

All munching, marching... the action stopped.

People surrendered their beans... you couldn’t do anything but surrender

Palach was the boy who became president, I think.

He said, “Don’t worry about it.”

It was an exciting time... water cannons.

Taking shelter in the back of a shop

We were soaked to the skin

My jacket was blown off with water jets... I lost my jacket... just a small thing but... I backed away... I felt I couldn’t stand up to the water jets... they said, “Get back! Get Back!” People were worried about me taking photographs. A girl said in English “Go ahead, print them in England. Let people see”. I remember a young girl lifting the fence so we could crawl under to get away... they were building an underground... an underground railway? I remember I couldn’t leave Prague that night because the water tanks were on the street... there was a curfew... I slept on the most uncomfortable sofa. 

In Bratislava the world collapsed where the girl got shot.


‘On August 21, 1968 armed troops and tanks rolled into Bratislava, Czechoslovakia.  Shots were fired on the Safarikovo Square near where the old bridge crosses the Danube.  A 17-year-old girl died.  Citizens screamed, cried, fainted.  “Socialism with a human face” was over.’ AC


There were tanks parked and waiting for orders

The girl had a magazine, ‘Czech Life’.

I went to see where she was shot.

The underground, they keep their toes down but they got their messages through...

They didn’t hide their stuff in kitchen cabinets (Implying that someone else did or does? AC)

The Czechs are very good with words... toilet, information, sounds.

Writers and artists...

We ran to see a poet reading his material

He expressed his thoughts

I liked the rhythm, so to speak

His words never touched me

It was a relief to get shot (For the girl?  Better dead than…? Or is the colloquial sense of ‘get shot’ as ‘get shut’/get rid of?  Or did Frances get shot, literally?)

I remember driving behind tanks...

A heavy night... it rained hard

Not many private cars

“We better hurry up!”

A house the size of a kitchen cabinet

The near aspects...six people, packed in

A kitchen where we all washed and dressed and dried by the fire

Six soap trays... three doors

Sharing toothpaste

There was a young couple with a baby

No private moments...

We put up panels for privacy (A previous experience of communal living and its threats to personal identity. AC)

I put my head down

This should be a film... my life... I see all of it as a script. 

 

Session 8

 

Fragments from a conversion in June

 

I can write four pages in an hour about this. I pick a thought, another memory... the cats come out of the bag... it’s difficult to get them back in the bag. If you let the cat out of the bag they tend to stay on the windowsill. Do you believe in God?

DC. No


These cats recall the earlier ones that Frances mentions, but she has also invented a new idiomatic phrase ‘If you let the cat out of the bag they tend to stay on the windowsill.’ Frances has an extraordinarily creative use of language. HZ


.

I don’t believe in God either... especially in the way it’s been prescribed to us... “Peace and Goodness”... I don’t believe in peace and goodness... (This is almost word for word what Sid says? AC) they’re no guarantee of happiness for anyone... not now America has gone insane. My sister said I should be happy with my lot. I think that, when I get older... what we have to... lost it.

To try to come to terms with me... it’s hopeless now. Life is quite a long stretch to stay happy all the time. I was always terribly shy. I played piano for twelve hours a day, but the day I had to play on stage I collapsed. The things that might have given me real happiness... they filled me with dread. I really don’t know why. When I think back... I have moments of whitened snow... of losing myself.


The fresh and direct phrase ‘Life is quite a long stretch to stay happy all the time.’ This could almost be the distillation of a Philip Larkin poem! HZ


What more is there to say? Happiness is fickle.

Dubcek was cheered... the young people came onto the streets... a weight lifted off their shoulders. Dubcek was the young man who took up the reigns when the communists left. The older people thought he was moving too quickly so... I think he was arrested, and taken back Bratislava in chains. In my head they always take them to Bratislava... to the countryside. I remember buying a ticket... there was an arch... with a white light above... a dirty greyish window... a ticket window. I bought... for three pence... “What ticket do you want”... “A return ticket to Bratislava, please”... I was a freelance journalist... she said, “What do you do?”... She put her hand flat down on the ticket... I wasn’t allowed to go. I told her I’d like to see the place... “No journalists”. I burnt my boats... they wanted me to sink it instead. 

I went to Prague to see the history and the beautiful gardens but my photographs were all hard cement... new, not old. Paul, the scriptwriter, picked me up at the airport. They asked me to write something that changed my life. I came to write about the gardens but there were tanks in the gardens.


‘I came to write about the gardens but there were tanks in the gardens’ an apocalyptic image summing up a great deal of 20th century history in one short, shocking image. Poetic phrase that recalls Milosz’s poetry, for example ‘A song on the end of the world’. HZ

 

A Song On the End of the World

 
by Czeslaw Milosz
translated by Anthony Milosz
 

On the day the world ends
A bee circles a clover,
A fisherman mends a glimmering net.
Happy porpoises jump in the sea,
By the rainspout young sparrows are playing
And the snake is gold-skinned as it should always be.

On the day the world ends
Women walk through the fields under their umbrellas,
A drunkard grows sleepy at the edge of a lawn,
Vegetable peddlers shout in the street
And a yellow-sailed boat comes nearer the island,
The voice of a violin lasts in the air
And leads into a starry night.

And those who expected lightning and thunder
Are disappointed.
And those who expected signs and archangels' trumps
Do not believe it is happening now.
As long as the sun and the moon are above,
As long as the bumblebee visits a rose,
As long as rosy infants are born
No one believes it is happening now.

Only a white-haired old man, who would be a prophet
Yet is not a prophet, for he's much too busy,
Repeats while he binds his tomatoes:
No other end of the world will there be,
No other end of the world will there be.


I shared a room with six people but I was alone all the time... (Here’s the bit you mentioned earlier, David. AC) Paul said you can have the sofa but be out by eight. I sat in cafes and watched the people in the streets. I put their words in my script.


Frances as a scavenger (the cat image that she mentions earlier)  gathering people’s words together for her own purposes. HZ


Paul was a script editor for Hollywood... I typed his dictation... he was a boyfriend later. He was blacklisted by then... it was the McCarthy period... he couldn’t get any work. I think he supported... he had no rights... if I’d been born in America I would have been in the same boat. I couldn’t see what was so awful about communism until that moment with Palach.


Frances’ stories condense swathes of history and crossing continents, from communism to McCarthy’s witch hunts. HZ


I took a very good photograph of a Czech woman... she was going to the illegal cemetery of Jan Palach... his relatives and admirers built it. They all met in the cemetery with picnics, and sang songs... much as they did here for Diana. It was upsetting. Kids took their sandwiches... there was... I didn’t like her.

People went to the grave in the evening quiet, and silently... they had gone through years of oppression... no freedom to express themselves. I saw a woman hurrying through... downcast... I was standing by the graveyard... they knew I was a foreigner, a target, because of my clothes. People would come up to me at work and ask very discretely... “Would you sell your jacket? Your suit... just half?” They liked to dress well. The communists preserve food in the old method by bottling it... you stood out in your western clothes... you didn’t look so depressed. I remember one evening walking home... I remember someone following me... he probably only wanted some carrot soup... I’d walked all night... so I could listen to the stories.


Poetic irony that Frances walked all night so that she could listen to these stories and that her own stories have now been so carefully preserved. She is captured in the form that has mattered so much to her during her life. HZ


Session 9

 

July

In Cyprus I lived in the hotel in Nicosia... then a villa, and then to America for a year... I never called anywhere ‘home’. America is a frightened country... they’re frightened about what might come after them... they want to sweep away the other religions... I think there could be another new star up there popping out at night... just looking down for now and not having anything to do with us yet. People in America think they shame themselves and shame their family if you don’t have the newest products... the big TV, children’s shoes, and an umbrella. I always had a small television... small and black and white. I liked to get rid of things... it was quite a relief to get rid of the furniture.


Interesting chain of association between religion and ‘another new star’. Having no home and getting rid of possessions are analogous with Frances’ current situation.  There are a lot of references to furniture in these sessions, and also to the various ‘tools of her trade’ as a photographer/journalist: camera, typewriter, phone. AC


I started to write my own book on several occasions... I thought that if I just start to speak I would be swept forward and it would be easier to re-write... my problem was low self-esteem... I didn’t think anyone would be interested. There’s a whole book in me about family strife. My sister rang me up and I didn’t answer because I didn’t have a phone.


I love this – nonsensical and yet says so much about her relationship with her sister.  S.B

Not answering because you don’t have a phone sounds comical at first glance, but later ‘all the lines were down’ so it makes a kind of sense.  I’m struck by her emphasis on things that don’t work or don’t turn out as intended for various reasons – phones don’t connect up, photographs don’t turn out, cameras don’t work or get stolen. AC

These accounts of broken communications equipment etc crop up at what seems to me to be a significant point in Frances's story / and her dementia. They clearly refelect her increasing struggle 'to make herself heard' and understood. DC


My sister stepped forward so I could have a recent photograph... I didn’t look at her or show any recognition... I simply stood and took a picture... I couldn’t get my camera steady enough... she was running... I took it very quickly... she ran straight past me... the secret police photographed me... they concentrated their camera on me and put me in their files. Then there was an engravers strike so my pictures were never printed.

I really could have stayed in Cyprus. I stayed with a woman in a rented room for one night... sooner or later I was inside her walls... the court... I could have been caught.


Inside her walls = a court/yard (like the one she looks out on from the care home) court sounds like ‘caught’. AC

  Doors, open and closed, permeate this whole piece. S.B


I was doing peace work at a crucial time. All the lines were down... only one door was open so I went inside. It was dangerous because of the bombing... I curled up in a dresser... a place they kept clothes... a wardrobe I suppose they called it... safe enough. I was with the press. What happened was John... John was an important press person... we were caught unexpectedly... (She points into the courtyard) You can see us there. John Berger that was. I moved into his flat in Hampstead.


Some time ago I received this email from a friend of John Berger;  "Frances, John assures me, is telling the truth.  Sometime in the '50s he rented a large Victorian house in Swiss Cottage belonging to Anya Bostock:  4 Nutley Terrace.  He sublet a room to Frances. He describes her as 'farouche' (which can be fierce, wild, savage, or  shy, timid, unsociable).  But he also said something about her being like someone out of a spy story, or wanting to give such an impression.  He also met her in Prague, perhaps before his 1968 visit to Dubcek. He remembers that one night she slept on the floor under his desk during a curfew. DC

And back again ‘caught unexpectedly’ in the courtyard/caught yard. AC


It’s come back to me about the woman in the photograph... it was my sister. I took a photograph of my sister bending down and putting flowers on the boy’s grave. I had a wire cutter with me so I could cut a hole in the fence. I rang John Berger and told him that I had the picture he wanted. I slept under his dressing table while they were bombing.

There were practical problems... no food and no film... the butcher knew me. I had to walk into the shop in silence. He’d already have the meat packed... and (Distractedly looking outside) I’m watching all the circus animals at the zoo... oh, the butcher situation... he’d been blinded in the previous war... you didn’t see the lion just then did you? In Prague everyone’s heart went out to the lion... it had been blinded in Vietnam... it was in such a small room, alone by the castle. I can still see the castle from my window.

I’m lost again.


Prague has both a castle and a zoo, close together. Prague zoo held circus performances by its animals from soon after it opened in the 1930s.  Before the zoo, Prague had previous menageries, the first of which was at Prague Castle and was known as Lion's Court, because lions were bred there. Consequently the lion was adopted as a symbol of the Czech state because of its strength and courage.  

I wonder if the blinded lion was a symbol used by young protesters like Palach who believed their elders were turning a blind eye to Communist betrayals?

There is also Marjan, 'the blind lion of Afghanistan' who might be connected in Frances' mind as he became a cause for animal rights activists, see http://www.flickr.com/photos/ginstar/534914970/

Can't get any further at present with the blind butcher, but I suspect that 'turning a blind eye' might also be the central metaphor there.

AC


Session 10

 

August

(Someone drops a tray of cutlery outside in the corridor).

I don’t know what’s happening! There are lots and lots of extra doors... doorways, corridors, miles of corridors, stewards... they’re all eager to please... crashing about. All the heights are the same... the bed... the profiles... the same size... the rooms are made of boxes... cardboard boxes with springs underneath. It’s not even real... just cardboard and packing and lose springs! None of this is real.


Suggests that things are not ‘real’ in the sense of being makeshift, rather than imaginary. AC

Frances spent most of her time in a wheelchair. Room 21 is at the end of a long corridor some distance away from the dining room where she had her meals. The experience of being pushed to and from her room three or more times a day would probably explain her sense that there were 'miles of corridors', particulraly if Frances was unable to retain retain a mental map of the building. Is it pushing it too far to say that the change in level is giving her more or less the viewpoint of a child? 


Dear Dominic,

As myself and Dr Capstick have gone through the Frances text we've noticed the increasing number of times Frances talks about the objects in her room being fakes, even duplicates. She also mentions that they lack substance, “made of loose springs and cardboard”, and she also talks about her 'real' room downstairs. I'm very curious about this. There are obvious parallels to her experiences in Prague and elsewhere when she says she lived in an in a temporary room behind wooden panels, but I'm wondering whether it's possible that there might be a neurological basis for some elements of her story. DC

“Misidentification syndromes occur in a range of brain conditions including dementia. Typically a person, place or object seems different in some way and is held by the person affected to be an imposter, replacement or fake. If the symptom relates to a person it is called the Capgras syndrome; if to a place it is referred to as reduplicative para-amnesia.  Current theories suggest the problem lies in a disconnection between visual perception and emotional responses so that the person or place may look correct but the feeling evoked is wrong”. DF.

“It is interesting that in many cases of delusional misidentification, patients can actually be very logical, have an otherwise firm grasp on reality, and be well aware that the notions of their delusions are absurd. They know the impossibility of their claims, yet rarely can they be convinced that it is a false reality” (Breene et al., 2000).

I don’t get the impression that Frances really believes that her sister is Helen, or vice versa, although this can happen in dementia.  It’s more that there’s something that connects them with each other in her mind. AC


This room... they’re just student accommodation in term time. I have to move out when they come back. There are too many cats in the building. I don’t know where my next room will be... probably Paul’s old room... (A worried look) I don’t remember his surname! He’s Canadian... I’d phone him but a pipe burst high up in the wall and covered the phone with... sticky... with... glue. It doesn’t work. (A few days previously someone spilt cough medicine on Frances’s desk. Frances attempted to clean up the spill and accidently transferred the substance onto the telephone handset. The phone still works).

I’m lost again. I’m not at home in this old body.

John’s flat wasn’t so nice... it needed reconditioning... nice enough for the time. I had to put down a plank of wood over the bath to use as a desk. Actually it was an old door on a hinge that came down over the bath. I paid a premium, maybe £500... maybe £1000... a lot for then.


She has spent time living in improvised situations; in rooms divided by wooden panels, sleeping under tables etc. Obviously this is shaping the way she sees room 21.


I had the flat in Swiss Cottage but I was never there. There was a Jamaican man below me... very unusual at the time. There had been a violent incident from an ex-boyfriend... he nearly killed me... and this Jamaican chap came charging up the stairs... to the rescue. I wasn’t much interested in boyfriends after that. There was an Austrian woman above me, and a Jamaican chap below.


The violent incident with an ex boyfriend who nearly killed her hasn’t been mentioned anywhere before as far as I can remember.  Seems odd given that she has mentioned several times that Helen or other women were violently attacked by their boyfriends. AC


John was an art critic... a writer and art critic... he was very left... I met him in those circles. I was never a communist. I’m not sure I ever met him at the flat... I remember meeting later... maybe at his daughter’s wedding in Prague... maybe when I bought the flat. In those days it was a nice address... there were four flats in the one building... I went in and out... I bought a little car for £5... an Austin 5... I’d only just learnt to drive. I hardly got it to work... actually Jim bought it for me... it had a piece of string tied to the starter... Jim said not to bother with it... “Scrap it”. It stuttered when it went down the hill. Cyprus was appalling... the driving was appalling... if you can drive there you can drive anywhere. The women are nice and very courteous... the men are nice in their way... almost Middle Eastern... quite a good laugh... not the marrying kind.

I’m trying to figure out where I met John Berger... John wasn’t so well known back then. I remember reading some of his writing... it was very good, but I wasn’t interested in art... I was interested in photography. I took a photograph of a farmer sitting on the ground peeling corn. It’s broken, my camera, that’s why I’m not taking any photographs. (She picks up the receiver of the telephone and holds it to her eye, like a camera). It doesn’t work.

Later I had a darkroom... the photographers all scooted off during the invasion... I was alive at the time so I took up the reigns. It’s difficult to say w, x, y, z... I’m always... had an interest in the photograph... a Leica... my first camera... s, t, e, v, w, x, y, z... the second one my father gave me. My mother was furious. She was jealous, and my sister was jealous in a different way. My father was a very nice man... a businessman... he helped as far as he could. I have a meeting with him tomorrow. (Frances is very quiet for a minute. Her eyes dart anxiously around the room. It seems that she is conscious of her mistake).

I left home when I was 19. I put some clothes in a bag and walked out the door. Sometimes it seems so long ago and sometimes it seems not so very long ago at all. I moved flats a lot. I remember I had this flat and then... another girl moved in, and she went off with my camera, my light... what did you call it? My L, e, k... my fluorescent... that I used for writing pictures... my typewriter?

DC. The Leica?

Yes.

I had to get up early because I was digging... sleeping... sleeping in the dining room... behind a screen... the other tenants thought I might be trouble because... I’ve lost my thought. I liked to be a witness... I put everything in the script. There was Helen, a journalist... The Czech women had to get up early to queue for food. I think I told you that I met the butcher? Helen told me not to speak to him... they give the foreigners rotten meat... the worst cuts. Someone said they put poison in the soup.

 

Session 11

 

September

This session takes place at Frances’s desk. She has just returned to her room having had breakfast in silence opposite one of the male residents. Throughout the following conversation, she repeatedly searches in her bag and picks up letters, newspapers, bags of sweets and a hand mirror, and asks me what they are.

I think I read all about my story in the paper two days ago... ask someone like John Berger... (She picks up a newspaper and waves it angrily) Ask him this! I wrote letters to... I would have liked... why should I now be separated from a major part of my life? Oh, I don’t know what I’m talking about.

I did another article a week or two ago. (She searches in a magazine) Lost it! It’s about Prague. We... this is Jim... we ran into a shop, or a café... I forget which... I said to Jim... now was it Jim? I said, “Things are going to get nasty”.

DC. Who was Jim?

My boyfriend at the time... when the invasion was over (long pause) the aftermath.

DC. Good word.

The Czechs were free to walk about the square in the "aftermath". A lot of young people came out selling things... they fixed stalls in the square... souvenirs and things they made. There were artists and young people expressing their joy. I have pictures (She searches on the table). There’s nothing here! Jim must have taken them... Jim Proctor... he writes for the Musical Times. He had a girlfriend who was elderly and promoted his stuff.

I never married... never wanted to... I liked my freedom. I liked to get up in the night when there were crickets. I once thought that I might have to get married... as a woman it was sometimes difficult to make headway. I wasn’t taken seriously as a journalist. The men got the best jobs. What am I saying?

The Greek Cypriots had a lot to fear... the best jobs and so on went to the Turks. We stayed at the Hilton Hotel with a huge red cross. I remember a very capable young man... a clean German type with a typical pretty American wife... he stayed at the hotel to organise food... he painted a huge red cross on the roof. It was dangerous to go on the roof as you can imagine. There wasn’t enough food to feed everybody for more than three weeks... we slept in the ballroom... he put tables together for sleeping. I seem to remember the hotel being bombed. I jumped... I was literally thrown up in the air. I tried not to show fear... but there were ones who were. dangerous... a danger to themselves and other people.

I was an independent journalist so I had no cover. I drew an 'I' for Independent on a piece of paper. I took it over to the Turkish side... and I had... I remember we went into a park near the Hilton and a dog came in, and it collapsed at my feet. I begged for food for the dog... or just water... but there was none. John wanted to chase him away. He said it’s better to start with the children. I don’t see why. That’s what they said, not directly but they don’t ever say it directly. No one ever says the old ones get nothing... so all the cats and dogs came to me! I’ve found my voice again! I’ve remembered a wonderful thing... our friends the cats!


Interesting association between animals/old ones who get nothing.  Feel an affinity with animals that she doesn’t have for children. AC

There is a familiar mess to the rooms occupied by many people trying to maintain their independence through the course of a dementia. Frances sits in front of a desk. Over the course of these visits the desk gets piled up with chosen and imposed objects. The place acquires a kind of cluttered emptiness. There is mess (and grubbiness) but not personal mess. There are no photographs or keepsakes, only piles of flyers from Age Concern and the Alzheimer’s Society and others, care home welcome packs and leaflets, and dozens of letters about appointments with doctors and dentists. There are also piles of tissues, diaries, torn scraps of notepaper, half written ‘to do’ lists, lidless tubes of hand creams, inkless fountain pens, empty wine bottles and bags of sweets and chocolates.

Frances resisted in reality, or now sees herself as resisting, or likes to tells the story that she resisted, being under the control of an ‘authority’. I think it’s unlikely that she actually held up a card showing ‘I’ for ‘Independent’. She may be conflating a genuine press badge or sign, which she needed as a safeguard in Cyprus, with one of the many signs and leaflets around the care home which state that the aim of the home is to ‘promote the independence’ of the residents. Frances also attends a physiotherapy session every week where the therapist often talks about helping people ‘recover their independence’. A different kind of lost independence was obviously very much in the air in Czechoslovakia and Cyprus so the associations of the word are not altogether positive. There were obvious repercussions for activists such as Helen and Jan Palach. After a lifetime as a journalist when she must have visited many countries and reported and a great many events it seems significant that these particular experiences (both relating to a takeover by a foreign power) dominate so much of her thinking. It may be that the feelings and stories seem urgent now because she believes her safety and autonomy is under threat by her sister, the care home and her dementia. Then (possibly) and now she may have felt that she was not under ‘full control’ of what might happen to her. It seems more like an ascertion that she was and would like to remain 'independent'. Andrea's comment about Palach and the image / idea of being consummed seems very relevant. I worked with a terrified woman who, as her dementia progressed, became increasingly convinced that she was being eaten by invisble birds and as a result there was less of her every day. DC


DC. If this was published at some point what would you like people to learn from it?

(Frances pauses for well over a minute and continues to pause and think throughout the following statement).

The lesson... there must be a lesson, I think so... I always thought that the lesson is to look at the other side of things and to try... to try your best... to take a long time and think from both sides... take a long time and see your life from the... from the perspective of the other person. They should see... this is the hardest part to say... they... they should see both sides and just try to be happy. For me now it’s hopeless... the old people all start shouting and pushing forward. They all insist on their lines. I was thinking just the other day, this long story I’ve told... it’s too hard for them. I enjoy it but... I was looking just now at the old chimp in his cage... sitting there all alone, just chewing... and I thought that his story is too difficult for them to understand... to try to see from his side... did you see the chimp? That’s the lesson, but I don’t think people can do it. I don’t know what to say next. This must be the end of the story. Thank you.


I wonder if ‘old people’ here means people from the past. The pavilion of monkeys at Prague zoo was opened in 1950.  The first of the great apes in the zoo was a chimpanzee, Moke, who arrived there in 1950.  AC

Wow. This says so much about the nature of story, and empathy, and seems to reflect on the difficulties inherent in sharing difficult stories and having them listened to. S.B

It’s a bit late in the day to think about this but I wonder just how much Frances was deliberately putting the what happened to people she knew in her own story. I for one have thought a lot about how she’s confused what happened to her with what happened to other people (Helen and her sister). I’m not sure now that we can assume that she was quite so passive. What I haven’t thought enough about is the extent to which she was in partial control of the process and just doing what writers do all the time; observing, listening and documenting, and then deliberately drawing on her observations to tell a more entertaining story and keep me involved. I don’t think I’ve thought enough about the fact that she’s telling me a 'good story’, nor what needs were met for both of us by me coming back. There are many instances in which she states very clearly that she always put other people’s words in her ‘script’ (perhaps there is another less poetic interpretation of 'see your life from the perspective of the other person'). The process of constructing a good story would be very familiar to her as it's something she says she's done since childhood. DC


 

Asides.

As I was leaving the home Frances would often call my back as if she had remembered something important that she wanted to say. The following comments were each made separately and were not part of the sessions above. 

 

Someone else has been using my bathroom... my flannel was wet.


Some time back, when I was trying to juggle work from a lot of complicated and difficult jobs spread across the UK, I realised that I sometimes wouldn't remember whether I had just brushed my teeth. I would be so focused on hitting deadlines, writing applications, packing bags and not missing trains, that I'd clean - or start to clean - my teeth two or even three times before realising I'd already done it. After a couple of months I started to rely on checking whether the brush was wet. It sounds like Frances may have done something similar as a strategy for managing or monitoring her own memory problems. (Though it might link just as easily to the kind of thing she would do when she thought that she was under surveillance in Prague). Other people have told me that they began to know they had a memory problem after buying everything on a shopping list twice - slippage in daily routine tasks often seem to get noticed first. 


When I was little I could move my arms and legs... that’s true. The best thing is to die young.

The people here keep changing my room. They tear out my pages... making it less... putting up panels... making the room smaller. They come in the night to stage it so it looks real but it’s not real, it’s just words. I speak it and it the words slip behind the wall.


I am so fascinated by this link between the room and the story, the narrative and the physical, the real and the imagined.  S.B


My older one... she first said I should move in here... my sister... I have two sisters... or three sisters... but she’s a burden. When I was falling... I would slip and go on the floor... she would scream, “Oh Frances! Please don’t go on the floor”... she wrote a letter, more bile and poison. Pushing me here. Not my choice at all. First-born first served hierarchy... clothes... suitable for a... a dance! She takes on the dominant position. Family travails.


Another reference to the 12 (unsuitable) summer dresses her sister bought her when she moved into the home? AC


Sometimes it’s difficult to sort out what’s real and what wasn’t. I thought I was being abandoned... shipped off one day.

There were pots in the bedroom, which was the living room... pots of smelly old cabbage soap and... no salt. I would have been satisfied with less.

I nearly married an American, a nice man too... I couldn’t bring myself to do it... not now... we met at the language school... I regret that I never knew enough about life to move in with a guy. Even now I’m always questioning ideas about love.

I have never been able to figure it out... what my life means. There is some kind of order to it... there must be. It's real life.

In the Lebanon I had to sleep on a bench... but sleeping on a bench is better than sleeping in a sack and I... no, no I didn’t. 

I played the piano night and day... a waste of time. It took me sixty years to see it as a total and utter irrelevance.

I loved drama... I used to dress up in fine lace and perform my stories... and then my father bought me a cine camera.

Helen was strangled her in her own kitchen. A Russian soldier did it.

This would make an excellent script for a film.

People need to read it, sort of, reports from the frontier.

I wasn’t really a communist but my aunt called me a commie. My aunt was very wealthy. 

I used to listen to the radio... the radio is for people on their own.

I see what I’m up to, this is a play without a plot. 


It’s a great final line for a play.  AC


 

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Session 8: the cats come out of the bag… it’s difficult to get them back in the bag.

One of the things that is often supposed about people with Alzheimer’s disease is that they cannot play with language that is prefabricated, as idioms are. By prefabricated I mean that an expression like ‘let the cat out of the bag’ is an agreed idiom, and we all use that expression for that idea. If you change it to ‘let the dog out of the bag’ you lose the sense of it being an idiom. Yet most of us do have a sense, with the idiom ‘let the cat out of the bag’ that the figurative ideas map onto something else—the cat is the information that you must not let out of your head (the bag) because it is a secret. Here we see Frances, at a stage when her capacity to communicate is quite impaired, able to work with this idiom in a manner that is not wacky or nonsensical but rather creative within the bounds of what still works for that idiom. It indicates that it is not safe to claim that idioms are stored in memory whole, without any capacity for them to be broken down. In a research paper for the journal Dementia that I published in 2011 with Camilla Lindholm, a Finnish/Swedish specialist in dementia conversation, we report something similar: three people with dementia in a daycare centre similarly played with idioms rather than just completing them, when given the first half as part of a game. - Alison Wray

Posted By: Cables Clegg Date: 30/07/2012 09:25

In response to Alison’s posting, I also liked the neologism ‘First-born, first-served’ rather than the more usual ‘First come, first served’.

An interesting linguistic phenomenon that I’ve noticed before in people with dementia is the association of words with a common syllable.  Does this happen here with Audubon (the bird painter) and Dubcek?

                                      —————————————————————————-

There are a lot of ways of approaching this narrative, and I have seen large sections of it before at earlier stages in the process.  What struck me most coming back to it was its liminality; the constant emphasis on doorways, windows, walls, and stairways - not to mention caves and secret tunnels.

The supermarkets and laundromats Frances refers to in her poem ‘The unprivate room’ are in themselves liminal spaces, and something about the poem put me in mind of Edward Hopper’s Nighthawks – people whose fundamental aloneness in the presence of others is enacted in a neon-lit space somewhere between sidewalk and motel room.

There have been occasional references in care literature to admission to a home as a liminal experience, due to the need to adapt to new rituals and regimes, but Frances struck me as someone who has always been in the borderlands in one way or another (as in her ‘reports from the frontier’).

She first talks about hiding her poems in a ‘secret space’ in the wall as a child.  She seems to have a sense that there are words or ideas that ’make things happen’ hiding within the walls of Room 21 (curled up like cobras, perhaps).  Poems are private; but ‘a condition of being here’ is that she now has no privacy.  Her concern that she may be in Room 21 because she’s been arrested shows how transitions from one place to another can reactivate past traumatic experiences for people with dementia, including those ‘parts of history that are deliberately forgotten’. (Having worked for several years on a thesis about social amnesia and dementia, I don’t know whether to feel gratified or aggrieved by having it summed up here in one sentence by Frances!)

Frances mentions two dreams. One involves being trapped on a flight of steps where she sees a burning man.  This seems to be a link with Jan Palach the ‘beautiful boy’ who burned himself to death while she was in Prague; less in protest at the Russian occupation, apparently, than at the passive acceptance of it by the older generation.  In another dream the burning man is wearing her own old clothes, suggesting some link between his self-immolation and her own experience.

From the point of view of historical trauma, or post-traumatic stress, there is something intriguing about the association Frances makes between Palach’s burning body, which she returns to repeatedly, and losing her voice, something that it seems might also have happened to her on a previous occasion, around the time of the rift with her mother. 

‘The shallow ones opposite’ (end of session 2), I take to be buildings Frances can see from her room in the present day, and the idea that there are older, ‘deeper’ ones beneath them is a perfect illustration of the palimpsest; the original memory or image overlaid with more recent ‘layers’, which Freud also talks about in his article on trace memory, where he likens it to a child’s magic writing slate.

Andrea Capstick

Posted By: Cables Clegg Date: 15/08/2012 12:25

Obituary for Jaroslava Moserova by Rob Cameron. 

Jaroslava Moserova - politician, doctor, writer and translator - dies aged 76. Veteran politician, doctor and literary translator Jaroslava Moserova passed away in the early hours of Friday morning after a long illness. She was 76. Jaroslava Moserova was best known in recent years as a senator, but she also served as an ambassador to Australia, and was also a leading burns specialist - she was the first doctor to treat Jan Palach, the Czech student who set himself alight on Wenceslas Square.

—————————————————————————-

“She was a very good friend… she was a burns subject… a doctor… she’d been through fire. She was with me when the young lad set himself on fire… a futile gesture. She was the first on the scene.” Frances

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Rob Cameron has this look back on a life lived very much to the full.

Jaroslava Moserova made a deep impression on all who met her, not least inexperienced radio reporters taking their first tentative steps into journalism. When I first met her she was standing as an outsider in the 2003 presidential campaign - a female David standing up to two political Goliaths. She beat the first - Milos Zeman - only to be eradicated by the second, Vaclav Klaus. But while she was diminutive in stature she was, for many people, a towering moral authority.

Jaroslava Moserova was something of a renaissance woman. In 1955 she qualified as a surgeon, and spent the following three decades treating people with severe burns. After 1989 she served as an MP, then the Czech ambassador to Australia and New Zealand, then an active member of UNESCO, before finally becoming a senator. She was a writer and illustrator, and also the leading translator of Dick Francis novels - translating almost forty of his detective stories into Czech.

Her professional and personal life was heavily influenced by the twists and turns of Czechoslovakia’s dark century. But the defining moment came in January 1969, when she was working at the burns unit in Prague’s Vinohrady hospital. She was called in to treat Jan Palach, a young student who’d suffered terrible injuries after setting himself alight on Wenceslas Square.

“I heard the news when he was actually brought in. And as you know I don’t like to talk about it. He was fully conscious and he could talk. The first day he could still talk without great difficulty. And he kept repeating ‘tell everyone why I did it’ and we did try to tell everyone. And we kept telling him, that what he did was not in vain. It was highly oppressive, the whole situation. The fact that people that were not only giving up but also giving in, and the slow demoralisation was setting in. And that’s why he did it - he didn’t do it because of the occupation, but because of the demoralisation that was setting in. He wanted to shake the conscience of the nation. And he did - not only in our country, in many others as well.”

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“I knew him from his photograph… before or after I can’t say.”

“People went to the grave in the evening quiet, and silently… they had gone through years of oppression… no freedom to express themselves.”

“It’s come back to me about the woman in the photograph… it was my sister. I took a photograph of my sister bending down and putting flowers on the boy’s grave.”

Frances
—————————————————————————-

Jan Palach’s death had a profound impact on Czechoslovak society. The paranoid Communist regime tried in vain to erase all traces of him - even removing his remains from the Prague cemetery where he’d been laid to rest. But Jaroslava Moserova - who made the difficult decision not to emigrate from Czechoslovakia after the invasion - was determined to keep Jan Palach’s memory alive, and in particular to preserve the motivation for his suicide. She tirelessly corrected the mistaken assumption that his death was “a protest against the Soviet invasion.” It was, as we’ve just heard, a protest against Czech apathy, rather than Soviet brutality.

As someone who’d lived through both the Second World War and four decades of Communism, she was often asked for her view of the changes that followed 1989, when Czechs embraced democracy and the free market. That was a change which produced both winners and losers. Jaroslava Moserova made this eloquent comment about life before and after Communism.

“I usually use the comparison to a zoo. We lived like animals in a zoo, where we were sure of getting enough to eat, enough to drink, of having a roof over our heads, and of being relatively secure. And of course that our space was limited. Now, if you dissolve a zoo, it’s always the predators who are the first to use the new freedom, while the more timid, defenceless animals have a tendency to hide in corners, and some of them may even think that it was better behind bars because they forget the stench and the loss of dignity.”

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“I’m watching all the circus animals at the zoo… you didn’t see the lion just then did you? In Prague everyone’s heart went out to the lion.” 

“I was looking just now at the old chimp in his cage… sitting there all alone, just chewing… and I thought that his story is too difficult for them to understand… to try to see from his side… did you see the chimp?”

Frances
—————————————————————————-

Several years ago Jaroslava Moserova wrote the following:

“My credo was always to do what you have to do to the best of your ability, and not tell lies, especially to yourself. Of course there are times when you delude yourself, when you ascribe better motivations to your actions. There were only two occasions when I intentionally lied in response to a direct question, and I haven’t forgotten them to this day. I was no hero in the dark days of our history, but I never betrayed my beliefs.”

Rob Cameron

Obituary 24.03.2006 for Radio Prague

Original source; http://www.radio.cz/en/section/curraffrs/jaroslava-moserova-politician-doctor-writer-and-translator-dies-aged-76

Posted By: Cables Clegg Date: 17/08/2012 08:49

A fragment from Frances's poem 'Marigolds'. 

Posted By: Cables Clegg Date: 18/03/2013 20:55

A fragment from Frances's poem 'Last Moments in Prague'. 

Posted By: Cables Clegg Date: 18/03/2013 21:00

The window and table in room 21. This photograph was taken three months after Frances moved in.

Posted By: Cables Clegg Date: 19/03/2013 18:21

 

Doorway to room 21 with the corridors on both sides.

Posted By: Admin istrator Date: 25/03/2013 17:06

 

Session 2. I did photography for an English Language newspaper… still life and objects on a table.

Session 3. What I used to like was to go to Fenwick’s. They had a little table… a desk with a few chairs. Just a woman enjoying herself for a short time… looking at things she couldn’t have.

Session 4. These memories, they’re… still life… nothing more than parts…. bed and breakfast… strange items placed interestingly on a table.

Session 4. The people here keep changing the story… they move the furniture making it less and smaller… putting up panels. The small table where I write the daily reports… it’s gone behind the wall.

Posted By: Cables Clegg Date: 26/06/2013 10:18