Month: January 2021

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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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Book Reviews

“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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Book Reviews

“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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Book Reviews

“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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Book Reviews

“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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Book Reviews

“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

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“I Remain in Darkness” by Annie Ernaux

Translated from the French by Tanya Leslie

This slim volume was my first experience of the French author Annie Ernaux, a writer I’ve been intending to read for quite some time. This particular book has been namechecked in so many essays and articles I’ve read in the last few weeks it felt like the perfect opportunity to begin my reading relationship with Ernaux. I enjoyed I Remain in Darkness so much I have already ordered several more of her books. The writing is razor sharp, analytical and incredibly well-observed. Though it’s often painfully focused on the banal, repetitive and unpleasant aspects of watching a loved one’s journey with Dementia the language is so beautiful and each word so perfectly placed it still reads a little like prose poetry.

“My mother’s colour is fading. To grow old is to fade, to become transparent.”

Chronicling a period of four years, Ernaux sketches small intimate portraits of moments with her mother as an Alzheimer’s diagnosis gradually takes over her life. She’s moved from home into a residential care facility where Ernaux visits her frequently and also give us snapshots into the lives and experiences of the other residents. Much is made of the way Dementia removes privacy and autonomy. This is mostly viewed as a negative consequence of the illness. However, Ernaux also effectively explores the interdependency of the carer/cared for relationship. At times she seems to relish the closeness she’s found in being so intimately involved in her mother’s everyday life. She weaves in allusions to her own childhood, when her mother cared for her, the relationship she has with her two children and the way she is now caring for her mother like a child. There is a sense that this interdependency is both natural and at the same time shameful; that people are designed to care for each other, yet the harsh realities of caring are not something to be openly talked about.

“His mother too is suffering from Alzheimer’s; he talks about in a low voice, he is ashamed. Everyone is ashamed.”

Again and again Ernaux writes of her reluctance to write about her mother’s illness so honestly as if, in doing so, she is violating trust. And yet she cannot stop herself. Her own story is so closely tied to her mother’s story in order to understand herself she must explore her mother’s experience. At one point she goes as far as to say, (of her mother’s body), “the body which I see is also mine.” More than any other first person account I’ve read so far, I Remain in Darkness, seeks to place the carer, (and by default), the reader in a position of intimate empathy with the person who is living with dementia. As such it is a deeply upsetting but essential read.

I Remain in Darkness is a meditation on ageing, family, loss, love and memory which does not shy away from recording the more troubling aspects of Dementia. There is an ongoing focus upon the indignities associated with the illness as Ernaux observes her mother losing both her mental and physical capabilities. There is also humour present here, warmth and an attempt to explore both the present and past self of a person living with Dementia. A lot is left open to interpretation and there’s no attempt made to neatly join up the dots or offer a comforting resolution in the closing pages. As alluded to in the title, Ernaux and her mother remain largely in darkness throughout the book, struggling to find each other in the dark. I felt equally lost at times, yet relished the chance to glimpse what life might be like for a person living with Dementia who is constantly trying to find herself. I would recommend this book as an important read.

I Remain in Darkness was published by Fitzcarraldo Editions in 2020

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“There but for the” by Ali Smith

In true, and glorious, Ali Smith style, There but for the is a novel narrated from multiple perspectives, seamlessly weaving various timeframes, memories and characters together as their stories pivot around a central linked point. The pivotal point here is a dinner party gone dreadfully wrong. One of the guests, an almost stranger named Miles, excuses himself from the dinner table. He proceeds to lock himself in the spare bedroom and refuses to come out. Various characters are introduced into the story, helping to flesh out the life which has led Miles to this point. 

The point of the novel, as is often the case with Smith, is not stringing the reader along until they arrive at the big reveal moment when the whole locked room mystery will be revealed. Ali Smith is a much better writer than this. The point is that in getting to the point, or perhaps not even getting there, the reader relishes the journey and the opportunity to try on each character’s unique perspective and walk a chapter in their shoes. Thus, the plot device, though clever, always feels a little subsidiary to the incredibly well-crafted characters and the subtleties Smith weaves into each of their voices. This is a book about living and being and the way people’s lives crash into each other and how these crazy encounters are meant to be enjoyed not analysed. 

Around half-way into the narrative Smith introduces the reader to May Young, an older lady living with Dementia in a nursing home. May’s chapter is narrated in a close, and very intimate third, with much of the observation coming from what May calls, “the confines of her head.” It’s a very well-written exploration of how it must feel for someone living with Dementia during that strangely liminal period, when May is still aware enough to know something’s gone wrong with her mind, yet is already losing elements of her own autonomy. 

There’s a tremendous amount of physicality to Smith’s depiction of May. May is constantly narrating the movements and presence of her own body as if observing it at some distance. She is clearly struggling to situate her sense of self as attached to her own body when she thinks about the hospital band, digging into her wrist. 

“Well, but it was sore enough, that wrist on the bed, to be her own wrist, no stranger’s wrist after all, there where the plastic bit into it.”

Smith also explores the blurring of time within May’s head as she confuses a young visitor with one of her own children and talks about being overwhelmed by the memory of the three of them, frozen at particular points in their development.

“All three of her children ran about in May’s head in colour turned up too-high, on a throbbing green lawn bordered with throbbing yellow roses.”

May’s confusion extends to her own story. She’s trying to get the order of it straight in her head; to understand the implications and consequences of everything which has happened in her life. It isn’t easy. Dates slip and facts rearrange themselves. The story comes out back to front and in the wrong order. It’s a very believable account of Dementia. Ali Smith’s style of writing sits well with the fractured linguistic tics, the repetitions, questions and word associations which might be seen as typical of a person exhibiting the early stages of Dementia. May’s chapter exists as a microcosm of the themes running through There but for the. Yes, the reader wants to understand the story she’s telling. There’s a desire to pin down the narrative. But the true joy of May’s story is in the telling; in the getting to the point. Fractured, fumbled, shot through with humour and strange digressions, her elliptical narration gives the reader a wonderful insight into the workings of her brain and the sort of complex and wonderful person May Young is. 

There but for the was published by Penguin Books in 2012 

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“Small Mercies” by Bridget Krone

This beautiful novel aimed at upper primary children was an absolute joy to read. It’s set in post-apartheid Pietermaritzburg, South Africa and deftly explores a number of complex themes including Apartheid, the care system, class and ethnicity issues and ageing. The theme of Dementia could quite easily have been lost within the scope of the novel. However, Krone does such an excellent job of weaving her story together Dementia never feels like a tokenistic add on. It’s an integral part of the narrative throughout. The illness is written in such a way that young readers will encounter a very realistic, factually accurate depiction of Dementia without feeling threatened or fearful. This is a delicate balance to maintain in children’s and YA Dementia narratives and it’s testament to the skill of Krone’s storytelling that she maintains this balance throughout the novel.

Small Mercies centres around a young girl called Mercy who lives with her two eccentric, elderly foster aunts and their lodger in a ramshackle house on the edge of the town. Mercy is struggling to understand her family situation, the poverty she’s living with and the complex ethnic identity structures of South Africa as played out in her own classroom. She’s constantly worried that a Social Worker might appear and take her away from her beloved aunts. This anxiety intensifies when she realises they may lose their house and that her Aunt Flora’s increasing confusion is actually a symptom of Alzheimer’s disease. Eventually neither Mercy nor her Aunt Mary are able to cope with Flora’s confusion, accidents and wanderings. They find a place for her in a residential care facility and Flora must come to terms with losing yet another parent figure. 

Krone does a marvellous job of articulating Mercy’s complicated mix of emotions as she watches her foster family go through some radical and upsetting changes. I particularly loved the honesty with which Mercy describes her embarrassment over how Aunt Flora’s “strange” behaviour might appear to the other children in her school. Krone also writes extremely accurately about the way poverty can take an enormous toll on how a person living with Dementia is cared for. This little novel has a lot of heart. It speaks about the importance of community when it comes to care. It’s funny and wise and full of hope and there’s a brilliant, compelling story running throughout. I enjoyed it immensely and learned quite a bit about South African culture whilst reading it. 

Small Mercies was published by Walker Books in 2020