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About the author and blogger ...

Anne Goodwin’s drive to understand what makes people tick led to a career in clinical psychology. That same curiosity now powers her fiction.
A prize-winning short-story writer, she has published three novels and a short story collection with small independent press, Inspired Quill. Her debut novel, Sugar and Snails, was shortlisted for the 2016 Polari First Book Prize.
Away from her desk, Anne guides book-loving walkers through the Derbyshire landscape that inspired Charlotte Brontë’s Jane Eyre.
Subscribers to her newsletter can download a free e-book of award-winning short stories.

TELL ME MORE

Literary Dementia: novels by Emma Healey, Fiona McFarlane, Julie Cohen and Michael Ignatieff

26/9/2014

30 Comments

 
With Alzheimer’s research in the news again lately, I thought I’d better knuckle down to my much foreshadowed post on literary dementia. For readers and writers who are wary of fictional old age, the spectre of dementia might seem a definite no-no. Yet there’s so much potential in the condition for creative exploration and expression: the poignancy of loss; the enigma of memory and identity; the frustrations experienced by family and other carers; even, for those who can achieve the right tone without denigration, humour. So it’s heartening to discover young women writers who are addressing these themes in their debut novels: Emma Healey in the UK with Elizabeth Is Missing, and Fiona McFarlane in Australia with The Night Guest. I thought I’d draw on those novels, along with two less recent novels from more established writers, Getting Away With It by Julie Cohen and Scar Tissue by Michael Ignatieff, to explore fictional representations of dementia.
Dementia as mystery

One of the tragedies of dementia is the way in which the ordinary is rendered unfamiliar. Names of people and everyday objects are forgotten; life becomes a mystery to be solved. This aspect of the condition is beautifully played out in Elizabeth Is Missing in which eighty-one-year-old Maud attempts to resolve the dual mysteries of the sudden absence of her good friend, Elizabeth, as well as the disappearance of her elder sister in her 1940s childhood. Maud, like a true detective, tells us how she tries

to be systematic, […] to write everything down. Elizabeth is missing and I must do something to find out what’s happened. But I’m so muddled. I can’t be sure about when I last saw her or what I’ve discovered. I’ve phoned and there’s no answer. I haven’t seen her. I think. She hasn’t been here and I haven’t been there. What next? I suppose I should go to the house. Search for clues. And whatever I find I will write it down. I must put pens into my handbag now. The thing is to be systematic. I’ve written that down too. (p22)

The Night Guest also starts with a mystery: Ruth, a seventy-five-year-old widow living alone in a house by the sea, is woken at four in the morning by the noise of a tiger in the next room:

Something large was rubbing against Ruth’s couch and television and, she suspected, the wheat-coloured recliner disguised as a wingback chair. Other sounds followed: the panting of a large animal; a vibrancy of breath that suggested enormity and intent; definite mammalian noises, definitely feline, as if her cats had grown in size and were sniffing for food with huge noses. (p1)

Dementia is also something of a mystery for those who witness the decline in a relative, as explored by a son trying to care for his mother in Scar Tissue:

When I could think about anything at all, I thought that the simplest facts about what had happened would never be clear: when her illness commenced, when she was first aware of it, whether the manner in which she had struggled with it delayed or altered its course in any way; whether the manner in which we cared for her and fought to keep her aware of her surroundings helped to slow its passage through her brain; whether it was an illness of memory or an illness of selfhood. Simple explanations will not do. They fail to accord her the necessary respect. (p170)

Second childhood

In their confusion, decreased competence and need for extra assistance with navigating the tasks of daily life, dementia sufferers might sometimes seem like children. This can cause frustration in relatives as in these two quotes from characters in Getting Away With It:

‘Sounds monstrous, doesn’t it? But it’s maddening, an adult acting like a child. And it isn’t like normal illness, because they won’t get better …’

‘If she were whole, herself, I could argue with her … I want her to be herself again so I can be angry with her properly …’ (p368)

Memories of the distant past are often sharper than those of more recent events, so it makes sense that Maud, in Elizabeth Is Missing, should return to an unresolved issue from her childhood. In The Night Guest, Ruth’s experience of the tiger prowling her lounge is reminiscent of a child’s conjuring of fairies, monsters or an imaginary friend. Unfortunately, her childlike innocence leaves her ripe for exploitation.
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Attempts at reparation

As people lose parts of themselves and their memories, filling the gaps with imagined or borrowed events can serve as a way of alleviating the distress of not knowing. Part of the appeal of both Elizabeth Is Missing and The Night Guest is the humorous ways in which the main characters attempt to compensate for and/or cover up their failings. For example, Ruth, after discovering her carer in tears, comes up with the platitude:

‘… There are plenty more fish in the deep blue sea.’

Ruth found it easy to say these things from the safety of her chair. It was a little like recovering a language she’d forgotten she knew and still wasn’t entirely sure of the sense of. (p203)

Although dementia is only a minor subplot in Getting Away With It, I’ve included it here for a truly wonderful set piece when the elderly mother mistakes a scene from the film Casablanca for her own memory: 

‘It was our song,’ my mother was saying. ‘Harvey and I would listen to it in Paris, before any of this started. Young lovers. And when I saw Sam, I couldn’t help it; I asked him to play it for me.’ (p450)

It isn’t difficult to see the appeal. In Scar Tissue, a more serious novel than any of the other three, the narrator speculates on this same process from a new logical perspective:

The brain … appears to have some capacity to re-wire itself, to channel functions out of scarred zones into healthy ones. Not all areas of the brain are operative: apparently empty rooms are kept in waiting, ready for emergencies. She hid her memories of me in these rooms in the hope that disease might not find them, my name in one room, the memory of my face in another, the sound of my voice in a small closet at the end of the corridor. But the disease was thorough. It tracked down her memory, room by room, snuffing out each synaptic spark. (p164)

Terror

Ruth is initially thrilled to have a visit from a tiger, but this sense of specialness soon turns to fear. Similarly, she fluctuates between appreciation and terror regarding the care she receives from Frida. Visiting a police station, Maud feels overwhelmed by her inability to focus on why she is there:

I must do the thing I came to do. For a moment I can’t think what it is. My mind is blank. My arm starts to shake and my heart beats in my stomach. I take a deep breath and put a hand into the pocket of my cardigan, looking for a note. (p75)

But the most chilling description comes in Scar Tissue when, after having witnessed his mother’s deterioration, the narrator begins to suffer from the condition himself:

What I know now, what I have learned from her, is that there are two forms of death, not one. In one form, everything which holds us in this world, everything we love, may remain precious until the last instant. Everything will stay as it is. Faces will mean what they have always meant to us. In this form of death, life holds all its beauty to the last second.

Then there is a form of dying in which everything familiar becomes strange, everything known becomes unknown, everything true becomes false, everything loved becomes indifferent, everything pitiful becomes pitiless, everything compassionate becomes as hard as stone. This room will soon become a prison. The doors will be locked. I will try the handles. I will not be able to escape. The faces of my wife, my children and my brother will blur, decompose and then reform into the image of jailers. My own hands, my own face, my own thoughts will seem alien to me. The words I utter will make no sense, not even to me. I will be dying, but with my eyes open. (p198-199)

I challenge anyone to come up with a better description of terror.

Finally, if that doesn’t sufficiently cover the condition, there’s my own flash fiction piece, No Milk or Sugar, a play on the tragicomic element of mistaken identity; Paula Reed Nancarrow’s moving piece of life writing about the puzzle of dementia in her own family; and Caroline Lodge’s inspiring blog post about reading and writing projects for people with dementia.

Apologies for an unusually lengthy post. I welcome your feedback.


Thanks for reading. I'd love to know what you think. If you've enjoyed this post, you might like to sign up via the sidebar for regular email updates and/or my quarterly Newsletter.
30 Comments
Sarah link
26/9/2014 03:01:09 pm

The terror section got me the worst. There is no better word to describe this deterioration. It is terrifying. The clarity with which the character from Scar Tissue describes this because he is not within its grasp quite yet but has seen it is haunting.

I absolutely LOVE "No Milk or Sugar". Anne, that is wonderful.

Reply
Annecdotist
27/9/2014 10:04:01 am

Thanks, Sarah, glad you liked the story which is actually an outtake from my (unpublished) novel Underneath.
Glad you agree Scar Tissue is terrifying – I read it first several years ago when I was doing a project with a voluntary organisation that worked with people with dementia. Fortunately, the project wasn't literary, so I wasn't tempted to share it with those using the service!

Reply
Sarah link
27/9/2014 11:14:33 am

Well, I look forward to reading your (published!) book. If that excerpt is any indication of its quality, it will be picked up quickly and published.

It is terrifying. My grandmother had this (and lived with us a few years). It is awful for both the person suffering and those around him/her.

Annecdotist
30/9/2014 02:23:23 am

That's very generous of you, Sarah. I'll certainly let you know!

Norah Colvin link
26/9/2014 03:48:06 pm

Hi Anne, I really enjoyed reading this post and all the excerpts. Dementia is such a frightening prospect. Fortunately none of my closest relatives have suffered from it, but my mother-in-law and the parents, mostly but not all mothers, of many friends have suffered, some from quite a young age. It is a very cruel disease and I agree with you that there is little more terrifying than realising you are about to lose your memory, yourself, and your freedom as described in the excerpt from 'Scar Tissue'. A lovely picture book for children which deals with this issue with understanding and empathy is 'Wilfred Gordon McDonald Partridge' by Mem Fox, one of our best Australian writers for young children.

Reply
Annecdotist
27/9/2014 10:09:07 am

Thank you, Norah.
The picture book sounds interesting, are you saying that the character might suffer from dementia?
It reminds me of another novel I've read recently and will be reviewing soon – The Legacy of Elizabeth Pringle – in which (I don't think this is a spoiler) a daughter is somewhat detached from her mother's dementia until she witnesses an old man out in the street in his pyjamas being ridiculed by passers-by. Seems like a lot of folk would fail the empathy test.

Reply
Norah Colvin
29/9/2014 09:17:49 am

WGMP is a little boy who lives beside an old people's home and helps Miss Nancy find her memory by looking for reminders of her childhood and younger days. It is a respectful introduction to loss of memory. (I apologise that I may not have all details correct, I don't have a copy at hand at the moment.)

Annecdotist
30/9/2014 02:25:25 am

Sounds lovely. I think often young kids are more curious than prejudiced but parental embarrassment about staring and awkward questions can get in the way of them developing compassion.

Caroline link
26/9/2014 03:49:16 pm

This is indeed an important topic, and good to see writers of fiction exploring some of the challenges. Too often the behaviours associated with dementia are presented as humourous. I have added more titles to my tbr list thanks to this post.
(And thanks for linking it to mine about writing as a therapeutic activity).
Your blog continues to extend and delight me!
Caroline.

Reply
Annecdotist
27/9/2014 10:14:19 am

Thanks, Caroline. I think this theme is starting to pop up more and more in novels, kind of in the way that characters with autistic spectrum disorders became more popular after The Curious Incident of the Dog in the Night-Time. As long as the portrayal is sympathetic, even if humorous, I think it's great that it's out there. Something all too many of us will face, if not in ourselves, then in friends and family.

Reply
Lisa Reiter link
27/9/2014 08:42:03 am

Yes, indeed I agree - the chilling description of two forms of death from Scar Tissue leaves hairs standing.. and strikes terror in me as there's a little history in my family!

Interestingly I only recently heard of Elizabeth is Missing - on Wednesday - one to add to my list as it sounds like a good read. I like the synchronicity bringing it up only days later - something the universe is pushing under my nose.

Lisa xx

Reply
Annecdotist
27/9/2014 10:20:55 am

Thanks, Lisa, it certainly scary stuff.
I love the serendipity of you hearing about Elizabeth is Missing a couple of days before I posted this. Presumably a recommendation from a discerning reader? It's a lovely novel, quite moving obviously yet an easy read. I'd be interested to know how you find it when it reaches the top of your TBR pile.
Also, if you're interested, do check out my Q&A with the author, Emma Healey (on the site under author interviews).

Reply
Terry Tyler
29/9/2014 04:46:11 am

VERY interested to read this. My mother has had Alzheimer's for the last 6 years. I featured it in my novel Dream On, and am doing so again in my WIP, Last Child, though whereas in Dream On my character was already at care home stage, in my current one I show more of the slow deterioration. I've actually done it in a quite lighthearted way (without trivialising it, obviously), as my family and I often find that we don't always want to be all heavy and emotional about it. I've written a short story from the sufferer's point of view, which I believe you've read - in my novel I like to show it from the POV of the family, too.

Before Mum got too bad, ie, when she slipped in and out of it, she used to say to Dad that when she was going through an 'affected' phase it felt as if she was in a dream. A bit like the terror described so well above, I imagine.

My short story:
http://terrytyler59.blogspot.co.uk/2014/03/fly-away-from-here-short-story.html

Reply
Annecdotist
30/9/2014 02:16:34 am

Thanks for reminding me of your moving story. It has all the elements of the disease. Particularly loved this bit:
The specialist says I have Alzheimer’s disease. Maybe I have. I think I’ve just got Being-Seventy-Eight disease. I said that, and Richard told me I'm seventy-nine.
Heartbreaking to watch it happening to someone you love. Glad the post worked for you.

Reply
Charli Mills
30/9/2014 07:30:33 pm

A great group of book reviews on a tough topic. Each book seems to cover it in a unique story. What a great idea to develop a mystery-solving character who is suffering from the beginnings. Terrifying indeed to face a similar demise after watching one's parents go through the slow death. I had a friend go through that with both parents and after they died she was diagnosed with terminal cancer. I don't have the courage to ask her if she'd prefer the quicker death or the slow one. It seems unfair that she'd have to get this sick at all so soon after the years of care-taking her parents' dementia. But don't we always think that?

Your challenge has me thinking of a new prompt.

Reply
Annecdotist
2/10/2014 05:22:48 am

So sad for your friend Charli. What a blow after all she's gone through.
Glad to have contributed to the melange of thoughts that go into your flash fiction prompts at, now I've see what it is, will be interested to see if anyone can come up with anything more scary!

Reply
Charli Mills
2/10/2014 01:06:28 pm

We'll see if it dredges up any buried fears. I think confronting a fear can have a certain eloquence to it. Just as Terry has written. Caroline mentioned humor and I think we use humor to face our fears, but not dive into them the way these authors have. It will be interesting to see what a writer can do in 99 words. I felt that my flash was merely recognizing a fear, but not actually going into it. It's a step. These authors have gone on a journey!

Annecdotist
5/10/2014 07:27:51 am

One step at a time, I say! Recognition is the beginning of the journey.

Lori Schafer link
30/9/2014 11:27:44 pm

Interesting reading through the comments on your post, Anne. All women, and all moving irrevocably towards that age in which the risk of dementia becomes increasingly likely. What I did not know was that a woman in her sixties has a greater lifetime risk of developing Alzheimer's than breast cancer (http://www.alz.org/alzheimers_disease_facts_and_figures.asp), and also that the vast majority of caregivers in the U.S. are women, which makes you wonder where all the non-demented men are.

I can absolutely envision the terror - that one paragraph you quote sums it up nicely - because it must feel like many mental illnesses, which often cause a loss of touch with reality. Yet it's a fascinating subject, and one that has greater relevance as baby boomers age. We often hear talk of the upcoming burden on Social Security, but what of the burden on the younger generation that will inevitably need to care for their ailing parents? They will be as much (if not more) affected by Alzheimer's and related diseases - and what is perhaps most disturbing is the close-up "preview" they will get of that dreaded disease. I would guess that, like autism, which is becoming more prevalent, that we will see dementia cropping up more often as a subject in fiction simply because it is becoming a more frequent problem in our daily lives.

Reply
Annecdotist
2/10/2014 05:27:20 am

Didn't know that about the risk factor, Lori, but can well believe it. Very scary stuff. And interesting that the respondents so far are all women – will have to put a call out on twitter.
I've worked with people with psychosis and does sometimes seem quite similar to dementia, especially in the disorientation and occasional bursts of lucidity.

Reply
Teagan Kearney link
1/10/2014 03:33:41 am

A difficult subject and I thought the extracts you chose gave an excellent overview of how writers are treating the topic. And it is sad to think that we all know someone who either has dementia, or have friends who have someone in the family who is suffering from its effects.
I have great admiration for writers (and all others) who deal with the harder aspects of life we spend most of our time trying not to think about too much - that is until it happens to us or those around us - disease and death. Trying to be philosophical, not pessimistic, but we've all got it (death) coming to us one way or another.
Great extract from your novel/flash fiction; an entrance, a bit of description, and a little dialogue, and you communicate a whole world of meaning and emotion. How is the novel coming along?

Reply
Annecdotist
2/10/2014 05:45:51 am

Yes, these aspects of the human condition can be hard to look at, yet I'm often drawn to them!
Thanks for reading No Milk or Sugar. That novel's on submission at the moment so we'll see how it goes. Thanks for your support.

Reply
Geoff link
2/10/2014 08:34:00 am

I read your post a while ago and the terror description hit me as hard as your other correspondents. In one way I'm lucky that I have zero experience of any form of dementia among family and close friends. In another it is utterly terrifying because all I have are the sensational headlines and my over active imagination. Reading about it in literature can only add to such foreboding. I think, subconsciously I dance, I do sudokus and other puzzles and fill every unforgiving minute with at least 60 seconds of distance run to do what I can to avoid my many memory lapses slipping into a diagnosis of something worse than realising I need to defrag my brain. Charli's latest prompt, spinning off from this talks about the terror, for her of blindness. Would that be better or worse than losing grip on reality? I don't know. Once gone the terror lies with those left behind but while one is floating away, fighting that remorseless tide it must be excruciating. And the terror of seeing a loved one slip, still alive from my grasp . How would I cope? I find I can comprehend grand disasters with so much greater clarity than such an individual and insidious death. Great post. I Still feel ill.

Reply
Annecdotist
5/10/2014 07:25:54 am

Thanks for reading and commenting, Geoff. I won't expect you to take all the weight of the male perspective on your shoulders.
Like your analogy of defragging the brain – I guess it gets scary when we reached the stage where we don't notice it needs doing and couldn't do it even if we did.

Reply
Paula link
10/3/2015 09:43:43 pm

I don't recall what kept me so busy in September that I never traced the pingback to this post. I'm here now because of your Heroines for International Women's Day. Thank you for referencing my piece. There's a lot to worry about with my mom right now - and my dad's caretaking; I'm getting ready for a visit at the end of the month AND trying to write a major Dementia Capable Communities grant that's due just before I leave. Somehow the idea of a detective with memory issues sounds like just what I need right now; I just downloaded the audio version from the library.

Reply
Annecdotist
11/3/2015 05:54:47 am

Thanks for coming back to this, Paula, and sorry that things are getting more difficult with/for your parents. I hope spending time with Maud won't feel like an overdose of dementia for you, but she's great fun.

Reply
Stephanie Jane link
14/6/2015 12:21:12 pm

I've just found this post having devoured Elizabeth Is Missing today. My emotional reaction to the book is unexpected and I kept welling up while reading it. Emma Healey's imagining of the fear and frustration of being trapped inside dementia is incredibly moving. I will put the other novels mentioned here on my TBR list.

Reply
Annecdotist
15/6/2015 06:33:15 am

It's a powerful novel, isn't it, and so well written. And I'm so glad you found my post after all this time.

Reply
Patricia Anne Bryan link
27/5/2022 08:41:47 am

Synchronicity!Have a copy of your "Matilda Wilson"on my the pile!

Reply
Anne
11/6/2022 03:31:38 pm

That's fab, I hope you enjoy my Matilda :)

Reply



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