Author: Jan Carson

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Book Reviews

“Memory” by Margaret Mahy

I’m going to be really honest. It took me longer than usual to get into Carnegie Medal winning writer, Margaret Mahy’s Memory. The novel opens with a quite lengthy, and somewhat confusing section which introduces us to the main protagonist, Jonny Dart. He’s drunk and angry and trying to get to the bottom of an incident which happened many years previously. He wants to track down a girl named Bonnie. It took me quite a few chapters to work out why and, even then, I wasn’t really interested in the backstory about his sister’s tragic and untimely death. Memory really began for me, the moment Jonny stumbled across an elderly lady, pushing a shopping trolley across a car park in the middle of the night.

In some ways Sophie, is the archetypal crazy old lady I frequently encounter in novels. She has Dementia. She lives alone. She dresses oddly and doesn’t eat properly and has let her house fall into disrepair. She owns many, many cats. She is, like every other crazy old lady, firmly stuck in the past. What saves Sophie from becoming a stereotype is the way Mahy gives her quirks and foibles peculiar to her. There’s also a level of gritty honesty here which I’ve rarely encountered in those YA books which tackle the subject of Dementia. Through a series of slightly contrived events, Jonny moves in with Sophie and becomes -if only temporarily- her live-in carer. Mahy gives the reader an unflinching picture of what it means for a young man in his early twenties to care for an elderly stranger, especially one of the opposite sex.

She describes Jonny’s concern over the state of Sophie’s house with a wonderfully accurate matter-of-fact tone. Similarly, Jonny despairs of her eating habits but when she gets distressed offers her a packet of biscuits and tells her to comfort eat the lot. There’s also no squeamishness when it comes to describing the more personal aspects of Sophie’s care such as dealing with her incontinence and helping her to bath. So many of these ‘young person befriends a quirky senior’ narratives shy away from tackling the physical aspect of caring. I’m grateful that Mahy included these vignettes and also offers her readers a kind of manual for how two people can negotiate around each other’s vulnerabilities to find a means of caring for each other. There’s a lot of dignity at work in this book. 

By the time I’d finished Memory, I was captivated by the relationship between Sophie and Jonny Dart. I loved their humour and their warmth. I loved the way the story is grounded in the New Zealand where Mahy grew up. I could’ve done without the flashback episodes or the snippets of lyrics from pop songs which made the book feel a little dated in places when actually the central relationship reads as incredibly contemporary and really fresh.

Memory was published by Harper Collins in 2002 

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Book Reviews

“Tamar” by Mal Peet

Guardian Prize- winning author, Mal Peet won the Carnegie Medal for Tamar and it’s pretty easy to see why. His YA novel is an epic read, spanning fifty years of history and three generations of a complicated family. It’s a big book but I read it in less than twenty four hours because I simply couldn’t put it down. If you like historical sagas with plenty of action, you’ll absolutely love this book. It focuses on Tamar, a young fifteen year old woman who, after her grandfather’s suicide, attempts to unravel his complex past. Peet then uses flashbacks to 1944 to reveal Tamar’s grandfather’s side of the story and introduce the people and events which shaped his life. 

It transpires that Tamar’s grandfather was an undercover agent for the allies, operating in the Dutch resistance during the latter part of World War 2. As Tamar discovers more and more about his past, she begins to suspect that he wasn’t the man he purported to be. In normal circumstances she might have asked questions of her grandmother, the women who’d escaped from the Netherlands with her grandfather in 1945. The two of them had spent the remainder of their lives in England, yet never quite managed to shake off the past. However, Tamar’s grandmother has developed Dementia and can’t offer her granddaughter any help in unravelling the fifty year old mystery of who her grandfather really was.

I’ll be very honest. There are only a few chapters of Tamar which deal explicitly with the grandmother’s Dementia. It’s mostly a kind of historical fiction thriller with a tiny bit of romance thrown in for good measure. It’s a brilliant story, exceptionally well-written and I’m grateful that the inclusion of a Dementia narrative made me pick it up and read it through. The sections which focus on Dementia might be slim but they’re very well-crafted and capture a couple of aspects of the illness I haven’t seen explored in many novels so far. Marijke (the grandmother), is a Dutch speaker who learns English late in life, “her English had never been perfect like Grandad’s. She’d often search for the word for something, clicking her fingers impatiently, then give up and use the Dutch.” As her Dementia develops Marijke loses her English and defaults back to her native Dutch. No one in the care home she lives in understands her. They do, “what English people do when they speak to foreigners: talk slowly and loudly in English, and mime.” 

I’ve not seen this concept of defaulting to a primary language included in any Dementia narrative I’ve read so far, though I’ve witnessed it a few times in community arts practice when working with people living with Dementia who’d spoken Irish or another language before they learnt English. I also noted with interest Marijke’s attempts to hide food from her carers; a throwback to her youth, when she’d hidden food from the Nazi’s who’s overran their neighbourhood. This is another practice I’ve witnessed amidst people living with Dementia.

Peet’s description of Marijke’s Dementia is uncannily accurate and well-observed. The loving and gentle descriptions of how Tamar’s grandfather enters into his wife’s confusion as a means of reassuring her, are worth the read alone. This is why I’m including Tamar in my collection of Dementia narratives. There are only a few chapters featuring the older version of Marijke but they’re substantial enough to make this novel an essential inclusion, not to mention, a fantastic read.

Tamar was published by Walker Books in 2005 

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Book Reviews

“Toffee” by Sarah Crossan

In this stunning verse novel from Carnegie Medal winning YA author Sarah Crossan we meet Alison, a young woman on the run from a difficult situation at home. She ends up in a bleak seaside town. Alone, and with nowhere else to sleep, she hides out in the shed of an abandoned house. It soon transpires the house isn’t empty. An elderly woman named Marla lives there. Dementia has left Marla confused and mistaking Alison for an old friend called Toffee. She invites the young woman to move in with her. At first Alison is quite blatantly taking advantage of Marla but soon she begins to care for her. What transpires is a strange but intriguing friendship where the women become increasingly dependent on each other for company and companionship. The novel is perhaps, best summed up by the short four sentence description on the back cover.

“I am not who I say I am. Marla isn’t who she thinks she is. I am a girl trying to forget. Marla is a women trying to remember.”

Despite their differences Marla and Alison have much in common. They manage to become a kind of support network for each other as Marla tries to make sense of her past and the fractured network of her memories while Alison attempts to brave the future and the big changes she’s going to have to make.

Essentially this is Alison’s story. It’s told in the first person from her perspective but includes descriptions and analysis of Marla, snippets of her dialogue and even secondary sources like text messages. Through Alison’s eyes we are given a wonderful picture of an older woman, living alone with Dementia who is anxious to maintain her independence and determined to continue being fully herself. Marla is not the usual dottery old lady, depicted in much of Dementia fiction. She is feisty, funny and desperately quirky; as annoying as she is likable. In Marla, Crossan has created a unique and incredibly appealing character. She’s made it ok to find aspects of Dementia truly hilarious.

“I can’t get my feckin’ tights on, Marla shouts

from the bedroom next to mine.

My arse has expanded.”

Perhaps the most unique feature of the novel is its style. Crossan has written the entire story in verse. It reads like a novel, though looks like a poetry collection on the page. All the white space around the words serve as a constant reminder of the fact that because of Dementia there is often as much said, or implied in the silences, as there is when Marla speaks. This sense of erasure and retaining what’s essential about who a person is and was, is mirrored in Alison’s story and eluded to in Crossan’s beautiful words.

“No goodbye is forever

unless you can

erase everything you ever knew about a person

and everything you once felt.”

Toffee is a truly beautiful novel. It’s fractured language and lyrical, mesmerising tone is perfect for exploring the theme of Dementia. As I read, I felt Crossan was trying to pin down something fleeting and elusive with her sentences. She does an amazing job of capturing what it’s like for a teenager to do life with someone who’s living with Dementia. I’d recommend this as an essential read for young adults and actual adults alike.

Toffee was published by Bloomsbury in 2019

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Book Reviews

“Malcolm Orange Disappears” by Jan Carson

Summarising a book you’ve written yourself is a difficult and quite disconcerting thing to do. Malcolm Orange Disappears was my first published novel and, whilst I’m still quite fond of it and certain characters who appear within its pages, six books later, I can definitely see where it could be improved. The story focuses upon eleven year old Malcolm Orange, whose father has abandoned the family in Portland, Oregon. As he attempts to process this troubling situation Malcolm begins to notice he is, quite literally, disappearing. Malcolm’s mother has found a job as an orderly in a retirement village which comes with accommodation. As Malcolm settles into his new home he begins to befriend the elderly residents and together they go on a quest to stop him from disappearing.

Malcolm Orange is a magical realist text which uses metaphor and allegory to explore the various ways the older people in the retirement village feel as if they too are beginning to disappear. The loss of memory is explored at length. Many of the residents are living with Dementia and can’t remember important parts of their own stories. Malcolm and his friend Soren James Blue help the residents to form a kind of support group in order to capture one aspect of their history before it disappears.

“The People’s Committee for Remembering Songs existed solely for the purpose of remembering songs.” It meets several times a week and allows the residents to collectively recall the important songs which have shaped their identities. This section of the novel takes an imaginative look at how community and creative group exercises can, at best, help to slow the advance of Dementia and also help participants to find a sense of support and solidarity in being with others who are going through a similar experience. There is a particularly poignant scene towards the end of the novel where the residents all sing together in unison and experience a kind of miraculous release which doesn’t remove them from the realities of the illness but allows them to feel free and powerful as autonomous individuals. Much of this section was inspired by my own experience of volunteering with an Alzheimer’s Society, Singing for the Brain group.

“Emboldened by the miracles unfolding in every corner of the Treatment Room, the People’s Committee for Remembering Songs whooped and hollered, raising their wrinkled chins and hands in anticipation of further healing. The noise was deafening.”

As mentioned above Malcolm Orange is far from a perfect novel but it does give some interesting insight into how ageing, and in particular Dementia, is viewed from a child’s perspective. It explores the use of Dementia as a literary device for introducing fantastical elements into a story and also touches upon issues of sexuality, disability and autonomy in regards to those living with Dementia within a residential care environment. I hope it also advocates for the power of story in attesting to who a person living with Dementia once was and continues to be. 

Malcolm Orange Disappears was published by Liberties Press in 2014 

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Book Reviews

“This Excellent Machine” by Stephen Orr

This Excellent Machine is the first volume in an anticipated trilogy of childhood novels by Australian writer, Stephen Orr. Set in a single neighbourhood of a small Australian town in 1984 it is narrated by seventeen year old Clem who lives with his mother, his sister, Jen and his Pop, Doug. Pop has been a surrogate father to Clem since his own dad disappeared when he was a small child. Clem is incredibly close to his grandfather. They fix up cars together in the drive and have been plotting for some time to take off on a road trip, using an old treasure map to track down a seam of gold. As the novel begins, the family are just beginning to realise the implications of Pop’s Alzheimer’s diagnosis. Whilst Dementia isn’t the primary focus of the novel -it’s more a coming of age kind of piece- Pop’s illness is a theme consistently revisited throughout the novel and shown to impact Clem’s life in significant ways.

There were several thing I really appreciated about Orr’s depiction of Alzheimer’s in This Excellent Machine. Primarily I liked the way Pop’s confusion and deterioration is explored within a community context. He goes out of his way to make the point that, at this time, Australians living at this socio-economic level, rarely considered external care provision. Pop’s Alzheimer’s is managed within the family but it is also heartening to see neighbours and members of the local community taking responsibility for the older man. They look out for him when he wanders off. Two of them agree to accompany Clem and Pop on their road trip. They even encourage him to continue tinkering with cars as a means of retaining his sense of self and ongoing purpose. I appreciated the idea of community support which Orr is exploring. Having grown up in a small, rural community, in the eighties, it’s something I recognised immediately. 

I also liked the way Orr gives Doug a certain amount of autonomy. Doug might have Dementia but his family and the community around him still look to him to contribute to decision making processes. They respect his opinion and look up to him. At one point in the novel Doug attempts to help a young delinquent get back on the straight and narrow and we are given a glimpse of the way people living with Dementia can continue to contribute meaningfully to society. 

This Excellent Machine is far from being a utopian portrayal of living well with Alzheimer’s. Orr doesn’t shy away from exploring the more difficult aspects of the illness. Doug’s daughter is often frustrated by her father’s condition and their relationship is under strain throughout the novel. Clem finds it hard to watch the man who has been like a father to him, decline and lose interest in the world around him. Orr also includes a heartbreaking scene where Doug gets to be a participant on the TV quiz show, Wheel of Fortune and becomes confused and frustrated while it’s being recorded. All this to say, I found This Excellent Machine to be an accurate and balanced portrayal of an older working class man experiencing the early stages of Alzheimer’s. It manages to hold the balance between honesty and hope throughout. 

This Excellent Machine was published by Wakefield Press in 2019 

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“The Old King in His Exile” by Arno Geiger

Translated from the German by Stefan Tobler

I’m beginning to notice something of a trend in my reading. Writers who have a parent living with Dementia will often take the opportunity to write about the experience. Many of these books are much more interesting and, dare I say it, better written than the regular Dementia biographies. In The Old King in His Exile, Austrian novelist, Arno Geiger turns his attention to his father and charts the progress of his illness over several decades. The slow progression of the text was one of the main things I enjoyed about this book. Geiger has made a point of letting the story take its time. 

“With this book, I wanted to take my time. I saved up for six years. At the same time, I wanted to write it before my father died. I didn’t want to tell his story after his death. I wanted to write about a living person. I felt that my father, like everyone else, deserved to have an open-ended destiny.”

The book reads more like a novel than a regular biography. There are small snippets of conversation included, frequent trips back into the past as Geiger presents the reader with his father’s history and small vignettes of everyday life. It is beautifully written and meandering in tone. There’s a gentleness I loved about the way Geiger approaches his father’s illness. He gives the older man room to be what he needs to be. There’s no sense of rushing his story, no sense of trying to impose sense upon the narrative. This is not Dementia utilised as a plot device. This is carefully and respectfully bearing witness to the last few years of a loved one’s life. I particularly loved the image Geiger used to describe his father’s gentle decline.

I half-remembered a phrase about ending something in beauty. If my father carried on like this, then the same would be true for him as I had once read in a Thomas Hardy novel, which talked of an old man who approached death as a hyperbolic curve approaches a straight line – changing his direction so slowly that, in spite of the nearness, it was unclear that the two would ever meet.”

I know I will return to this text. It has offered me a blueprint for how to write about a person living with Dementia with dignity, respect and above all things, space. It seems almost wrong to have to point this out, but many Dementia memoirs are more focused upon the person recording the life, than the person whose story it actually is. The Old King in his Exile is definitely Geiger’s father’s story, yet in writing it with so much openness and genuine fondness, Geiger constantly reveals more and more about his own character.

The Old King in His Exile was published by And Other Stories in 2017 

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“Wrinkles” by Paco Roca

There are so many ways to tell a story and just as many avenues for engaging a reader. An issue as diverse, wide-ranging and various as dementia will require the whole gamut of an artist’s creative ability as they seek to find effective means of telling a story that isn’t their own. Spanish author, Paco Roca was one of the first to record the dementia experience in a graphic novel. Originally published back in 2007, Wrinkles was later translated into English and republished. Wrinkles follows Ernest, an older man, living with Alzheimer’s disease as he is admitted to a residential care facility and at first struggles to settle into his new home.

We see the residential care facility and the residents themselves through Ernest’s eyes as he’s given a tour of the building and begins to join in with daily activities. The visual aspect of the book allows Roca to be playful with how he interprets Ernest’s gaze. Some images give us a realistic idea of what Ernest is seeing, others allow us an insight into the mental associations and memories his brain is dredging up as he tries to process his new surroundings and friends. Roca’s images also add a layer of humour to the text. One page features eleven almost identical illustrations of older people dozing beneath a clock as time progresses from morning to night. The final cell on the page depicts Ernest being asked if he’s had a good day. The visual is kind of like an illustrated joke and also effectively conveys the monotony of nursing home life much better than any phrase or sentiment could.

Roca also leaves space between his illustrations in order to convey the idea of memory and language loss and also the notion of endless, unstructured time. Not everything is said or stated because, with dementia, not everything can be quantified or expressed in words. Towards the end of the book Ernest’s Alzheimer’s develops and more and more cells are left without speech bubbles. We see Ernest still present even as his ability to communicate gradually begins to disappear. On the final pages of the book Ernest’s features are entirely removed from his face and we’re left contemplating the troubling image of a man whose identity has been removed by the illness he’s living with. Though Roca deliberately includes a final page of images -Ernest present in past memories- I’m not sure I agree with the way he’s depicting a person living with dementia in the final stages. The message he’s conveying seems to be Ernest is no longer Ernest; his only meaning is to be found in his past.

The author spent a great deal of time visiting retirement homes, observing and talking with residents as he researched this book. The results are stunning and very effective. There are moments when it’s impossible to convey with words, exactly what’s going on in the mind of someone living with dementia. In Wrinkles, Paco Roca has shown how visual images can often speak volumes when words begin to fail.

Wrinkles was published by Knockabout Limited in January 2015

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“The Madonnas of Leningrad” by Debra Dean

Debra Dean’s beautiful novel, The Madonnas of Leningrad is one of a handful of key texts we’ll be exploring as part of our research project. We’ll be sharing and discussing extracts from the novel during our forthcoming reading groups. The story shuttles between a wedding on an island in contemporary America and the autumn of 1941 where we first meet a much younger Marina, resident in Leningrad’s Hermitage Museum. As the city is under siege Marina struggles to survive in appalling conditions and yet while moving the museum’s masterpieces away for safekeeping, she finds solace in committing each image to memory. Many years later, during her granddaughter’s wedding, an older Marina experiences flashbacks of her old life in Russia and, as a result of the Alzheimer’s she’s living with, becomes increasingly confused about where, and indeed, when she is.

The Madonnas of Leningrad is an exquisitely written novel. It is worth reading alone for the beautifully drawn descriptions of the artwork Marina is so fond of. It also provides a gentle but accurate portrait of a family doing their best to nurture and accommodate their elderly parents as they deal with the implications of dementia. I found the scenes towards the novel’s close when Marina wanders from her hotel room particularly affective emotionally. Dean does a wonderful job of recording the fears and frustrations of the family as they try to track Marina down before it’s too late. Both her portraits of Marina’s husband and daughter are incredibly honest and accurate.

However, the thing I loved most about The Madonna’s of Leningrad was Dean’s ability to use the flashback device within her novel to effectively capture Marina’s confusion. As the story progresses and the reader is transported further and further into the backstory of Marina’s past, it becomes increasingly difficult to tell where the line between past and present lies. There were several moments when I had to stop and concentrate in order to locate Marina’s narrative. Was she describing a present scene, or something from many decades ago? I loved this natural sense of confusion. It helped me empathise with Marina’s experience. I felt like I was seeing and thinking through the lens of her muddled up memory. Past blurred with present. Fears and anxieties long left behind began to take on a fresh urgency. It was a very immersive reading experience. I thoroughly enjoyed this short novel and the way Dean expertly reveals the rich life Marina has lived by using fractured snippets of her memory.

The Madonnas of Leningrad was published by Fourth Estate in 2006 

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“Hour of the Bees” by Lindsay Eagar

Hour of the Bees is Utah-based YA writer, Lindsay Eagar’s debut novel. It’s a captivating story about a family spending a summer together on the sprawling sheep ranch which has been in their family for generations. The story centres around twelve year old Carol. At first Carol isn’t at all keen to give up her entire summer holidays to spend time with her grandfather, Serge on a sheep ranch in the middle of nowhere. Carol, her half-sister Alta, and little brother Lu are used to their life back in the city, with their friends and all the comforts of home. There’s absolutely nothing to entertain them on the sheep ranch, worse still the whole area’s been subject to a drought for decades and the summer months are unbearably hot. Carol and her family don’t really have a choice in terms of where they spend their summer. Serge is extremely elderly and has grown frail. His advancing dementia means he’s increasingly confused, mixing the past with the present and sometimes even mistaking Carol for his late wife as a girl. Serge is moving to a residential care facility at the end of the summer and the family have only a few months to get the ranch fixed up before it’s put up for sale.

Eagar weaves a beautiful magical realist story through the more familiar story of a family struggling to cope with change in the present and resurfacing hurts from the past. Carol grows close to her grandfather as he tells her a long and enchanting fairy tale about her families origins. She comes to understand that her roots and identity are tightly bound to the ranch and ultimately begins to empathise with Serge’s insistence that the land should stay in the family and not be sold to strangers. It’s a beautifully written story and a really enjoyable read with strong emphasis on the importance of listening to older people and valuing family connections.

However, I really struggled with the dementia narrative in this novel. Serge’s dementia feels like a kind of device used to propel the plot. He’s portrayed as confused and frail when the story requires him to be an object of pity or a bone of contention, grating up against the family’s plans. At other points he’s almost miraculously coherent and portrayed as quite strong and virile for such an elderly man. For example, though he frequently finds communication difficult he’s able to narrate, long and extremely eloquent stories about his past. I understand that the magic realist narrative running through the novel allows for a certain amount of liberty to be taken with how the characters are portrayed but I’d be a little concerned that young people with no experience of dementia who read this novel might not get an accurate idea of what the illness is actually like. Eagar, also weaves in a semi-miraculous happy ending for Serge and Carol which is very different from most people’s end of life experience with a loved one who has dementia. It’s an ongoing struggle when reading and writing fictional dementia narratives. The characters need to be written accurately and ethically and yet are also there to serve the story. For me, the balance isn’t quite right in Hour of the Bees, but it’s still an enjoyable read. 

Hour of the Bees was published by Walker Books in 2016 

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“The Vanishing Half” by Brit Bennett

I’ve been in two minds as to whether I should include Brit Bennett’s bestselling second novel, The Vanishing Half in my list of Dementia fiction narratives. The greater part of the novel does not touch upon the subject of Dementia. It’s an engaging, and incredibly timely, exploration of race issues in North America. Twins, Stella and Desiree Vignes, have grown up in Mallard, a tiny rural southern black community where lightness of skin is seen as desirable. The twins escape Mallard at the earliest opportunity and move to the big city where their lives diverge and take very different paths. Desiree marries a black man and after the relationship falls apart, moves back to her mother’s house in Mallard, with her daughter who is significantly darker than her. Stella, finding she can pass as white, marries a rich white man and moves to the West coast where her daughter grows up entirely unaware that she is mixed race. 

It’s a brilliant novel and a really engaging read and, like many contemporary novels, does not touch on the theme of Dementia until the final chapters. Lately, I’ve been noticing this as a reoccurring trope in contemporary fiction, especially novels which follow a kind of family saga narrative arc. As the protagonists -in this case the twins’ mother- grows older, they develop Dementia. I’m not questioning the appropriateness of Bennett’s choice to explore Mrs Vignes’ Dementia experience so late in the novel. However, in some novels, Dementia can feel like a tagged on afterthought or a neat way to resolve unresolvable plot issues. I’ve been noticing an increasing tendency to use a character with Dementia as a plot device. Confusion, memory loss and failure to recognise familiar people can, in fictional terms, be a handy device for creating mystery or suspending a moment of revelation. This is particularly apparent in the current craze for Dementia narratives in crime fiction. (I hope to write more about this at a later date). 

In The Vanishing Half, Mrs Vignes’ Dementia allows Bennett to swiftly and seamlessly reintroduce the long lost twin Stella, who has returned to Mallard decades after her initial escape. Her mother’s confusion and her inability to tell past from present means she accepts her prodigal daughter’s unexpected return with absolutely no questions. For Mrs Vignes’ it’s as if Stella never left. The cynic in me, could argue that Bennett uses Dementia as a handy device to resolve a lot of her plot lines in a swift and overly simplistic way. It’s awfully neat, to watch a family who’ve been fragmented and at loggerheads for three hundred pages, become united by their mother and grandmother’s Dementia for a handful of pages at the novel’s end. However, for the most part Bennet’s portrayal of Mrs Vignes’ Alzheimer’s is reasonably convincing and it’s so rare to see an exploration of Dementia within a black community I felt it important to include The Vanishing Half. 

I also felt compelled to note that Bennett’s inclusion of the line, “Alzheimer’s Disease was hereditary, which meant that Desiree would always worry about developing in,” is neither helpful nor accurate. Less than 1% of Dementia diagnosis are hereditary and ill-informed statements like this can cause distress and even panic in readers. I enjoyed The Vanishing Half immensely and I will defend to the hilt, the writer’s right to explore and record other’s experiences. But when it comes to publishing factual statements like the one above, especially in widely read novels like The Vanishing Half, I think it’s absolutely essential that the information conveyed is well-researched and accurate.

The Vanishing Half was published by Dialogue Books in 2020