Tag: Carers

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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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“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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“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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“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

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“Say Say Say” by Lila Savage

Whilst not strictly a novel exploring Dementia, Say Say Say has been an important addition to my reading list this year. It centres around a small cast of characters: Bryn, an older man whose wife, Jill has sustained a traumatic brain injury and Ella, the young woman he employs as a companion and carer for Jill. Jill exhibits many of the symptoms associated with Dementia. She struggles to process thought logically, no longer recognises herself or the people around her, requires a lot of physical assistance and, most notably, displays a form of aphasia which leaves her language and communication skills confused. Her lexicon is greatly diminished and she often resorts to expressing herself through a series of repetitive linguistic tics such as, “say, say, say,” as alluded to in the novel’s title.

Interestingly, Lila Savage doesn’t really attempt to explore or convey Jill’s experience or feelings as she becomes increasingly dependent on her carers. Say Say Say is a novel which focuses on the family and carer’s experience and as such, is an essential read. The reader is given a wonderful insight into what it’s like for a young woman like Ella to be responsible for someone so very dependent. We see her struggle to communicate effectively with Jill as her linguistic possibilities are incredibly limited. Eventually Ella lights upon some creative ways to connect with Jill. She begins to mirror the older woman’s linguistic tics.

“As the next best thing, Ella began to respond to Jill’s circular rants as though they were friends chatting, responding in a steady, sympathetic murmur, as though the natural back-and-forth of conversation were occurring.”

And in some of the most moving scenes in the book, Ella learns how to slow her normally hectic pace of life down in order to be present with Jill. Jill potters around the house and garden, often silent or mumbling to herself. While Ella reads, draws Jill and writes poems about her. In this way she manages to connect with some essential part of Jill and this connection makes it impossible to administer the physical side of the older woman’s care with anything but careful dignity. “Ella wants Jill’s every encounter to be respectful.”

Through Ella’s eyes we are also given a snapshot of how Bryn feels as he cares for his beloved wife who has become incapable of looking after herself and no longer knows who he is. “Bryn essentially lived in hell, Ella knew this even if she didn’t always acknowledge it. It was like he was confined to an empty white cell with nothing to do but observe the sights and sounds of the torture of the person he most loved.” Savage offers her readers a very honest portrait of a good man, who loves is wife and yet has become worn down and frustrated by the burden of caring for her.

It is this unswerving honesty about the carer’s experience which makes Say Say Say an exceptional read. The characters here aren’t remarkable. They’re honest, very recognisable, figures, doing their best under difficult circumstances, sometimes excelling and sometimes failing. They’re occasionally angry and despairing, occasionally able to seize small moments of unexpected joy. It reminded me of so many of my own experiences working with people living with Dementia and talking to their carers and family members. It’s a very moving book, beautifully written, shot through with small nuggets of humour and perfectly placed to give the reader an accurate understanding of how caring for someone with a life-changing illness will affect every part of a carer’s life.

Say Say Say was published by Serpent’s Tail in 2019

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“Stammered Songbook; A Mother’s Book of Hours” by Erwin Mortier

Translated from the Dutch by Paul Vincent

I first came across Dutch writer, Erwin Mortier’s, Stammered Songbook, a number of years ago and was almost instantly captivated by its use of language, it’s honesty and originality. It has remained one of my favourite pieces of writing about Dementia ever since. Mortier begins documenting his mother’s descent into Dementia as he notices her becoming confused. He continues to write about her and the development of her condition until she is close to death. In beautiful, lyrical language he weaves the story of his mother’s life around her journey with Dementia so time becomes a fleeting, nebulous thing. Past is present and present is past. This confused notion of the temporal allows the reader to explore the confusion which Mortier’s mother is experiencing and how it’s affecting her family. 

The narrative is written in first person throughout. Mortier’s account of his mother’s Dementia is largely told through his relationship with her. We see his mother through his eyes and we also see how he imagines her seeing the world, including himself. 

“Today my mother gave me a thorough dusting, thinking I was a piece of furniture.”

Mortier also records his father’s responses to his mother’s decline. There are dozens of tiny poignant snapshots of what a marriage looks like when placed under the strain of a Dementia diagnosis. His father tries to care for his wife at home and eventually, succumbing to the strain this causes, makes the decision to place her in a care facility. Both father and mother share Mortier’s sympathy and also his frustration. He loves them. He feels sorry for them. But he also subtly acknowledges that the situation they’re facing isn’t easy on either of them, or on him. The reader can sense the honest frustration implied within interactions like the following conversation with his father.

“I say: no one expects you to be strong. No one expects you to be able to handle this.

It’s quite something, he says, leaving someone behind whom you’ve known for fifty years.”

With Mortier’s mother, the relationship is even more complex. He talks of her helplessness and her dependence upon others, including himself, for the most basic kinds of care and provisions. He is very honest about the particularities of physically caring for an elderly person’s bodily needs though most of the narrative focuses in on his mother’s mental decline. He makes a point early on of acknowledging a gradual erosion of his mother’s self.

“Her “I” is becoming lost. That “something” that makes people so recognizably themselves.”

Looking after his mother not only involves practical care, but also -as the person chronicling the end of her life- a kind of representation. Mortier is speaking on behalf of his mother, voicing the experiences she can no longer explain and filling in gaps in the narrative where her memory has eroded. There is a responsibility inherent within this role to admit the points at which his own ability to accurately convey her experience runs out. At times the structure of Stammered Songbook is most reminiscent of prose poetry: small blocks of text which explore an idea or a theme using lyrical, resonant language.

“Will a day come when no one

remembers the right mistakes, no one still

knows what speech impediment

exactly to feed?

Will anyone bore through your sandcastle

of semantics with

firebreaks and understanding?” 

Mortier leaves so much white space in his writing. He has a poet’s sensibility when it comes to allowing his word’s to resonate and be interpreted by the reader. For me, this makes Stammered Songbook a particularly effective Dementia narrative. Little is fixed or concrete within this text. Everything’s up for interpretation and misrepresentation, as is often the case for those living with Dementia like Mortier’s mother.

Stammered Songbook was published by Pushkin Press in 2015

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“The Heart of Everything” by Henrietta McKervey

Irish novelist, Henrietta McKervey’s debut novel begins and ends with an insight into the life and experience of Mags Jensen, an older woman, living alone in a small Irish town, who’s recently been given a Dementia diagnosis. Mags leaves her home one morning to run some errands in town and never comes back. The major part of this beautifully written novel focuses upon her three grown-up children as they try to find their mother, come to terms with her Dementia and deal with the family’s troubled past. It’s testament to McKervey’s writing ability that, though a lot happens and is revealed in this novel, it still feels like a well-developed character study of a family slowly falling apart.

This is the first novel I’ve come across which deals in depth with the theme of people living with Dementia wandering away from home. It’s a common enough experience amongst people living with Dementia and their carers and McKervey handles it with tact and honesty, using the sections focused upon Mags’ experience to give us an insight into her confusion and the way she’s come to distrust her own thoughts. She keeps a notebook full of To Do lists though she regularly forgets what her own notes mean. It’s quite easy to understand how Mags might have become lost, when we try to track her muddled train of thoughts.

It’s equally easy to empathise with the family’s response. They’re anxious about their missing mother. They blame themselves to different degrees: perhaps they’ve not been attentive enough, perhaps they’ve underestimated the progress of her illness. As panic sets in and their efforts to track down Mags using posters, appeals and search parties lead to a series of dead ends, they begin to blame each other. Under pressure, past anxieties and issues bubble to the surface and McKervey expertly reveals how a crisis like Mags’ disappearance can reveal both the worst and the best in families and communities.

Mags’ Dementia and subsequent disappearance forms the catalyst for The Heart of Everything, however, the story, as it unfolds is focused upon her three children and the complicated ways their family is both bonded together and falling apart. It’s a very assured novel for a debut, with so much grounded, believable detail about family dynamics and the way individual family members will deal with something like Dementia in their own, very individual ways. It’s also refreshing to read a Dementia narrative very grounded within the familiar setting of contemporary Ireland. The references and cultural reactions are spot on and really helped to engage me in the story. Another recommended read.

The Heart of Everything was published by Hachette in 2016

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“The Waverley Gallery” by Kenneth Lonergan

In Kenneth Lonergan witty, poignant and surprisingly funny New York play, The Waverley Gallery, the action centres around feisty 80-something, Gladys. Gladys is an old-school lefty, a lifelong social activist and vibrant member of the Village scene and the owner of the Waverley Art Gallery mentioned in the play’s the title. Gladys is already exhibiting symptoms of Dementia when the first scene begins. The Gallery, though hardly lucrative anymore, gives her a routine and purpose to her days. When the landlord decides to turn the property into an extension of his hotel, Gladys’ condition rapidly deteriorates. A small cast of characters exist as Gladys’ carers and community: her grandson who lives in the same apartment block, her daughter and her daughter’s husband and the artist who will become the last person to have an exhibition in Gladys’ gallery.

The Waverley Gallery is quite a simply structured play. The scenes move between the gallery, Gladys’ apartment and her daughter’s house where the family gather for a weekly dinner and catch up. The simplicity of the structure allows Lonergan to focus on the interactions between characters. The dialogue is absolutely superb. Lonergan’s managed to perfectly capture the repetitive retellings of a person in the first throes of memory loss- we get the same set phrases, anecdotes and questions from Gladys at every single family dinner. Lonergan also has an incredible ear for how families communicate, talking over each other and at cross purposes, blending wit and humour in with fond mockery. Having sat through so many dinners with various family members exhibiting the first signs of Dementia, I can honestly say I’ve never seen this kind of dialogue written with so much accuracy and warmth.

Lonergan also gives time to the family members who have, by default, become Gladys’ carers. He notes their fondness for the old lady alongside their frustration with the situation and occasionally with Gladys herself. Gladys is also a powerful and dominant voice in the play. Despite her confusion she stunningly articulates her own frustration at how the final years of her life are playing out. She speaks poignantly about the loss of her independence and the plans she’d had for later life. The Time Out review called The Waverley Gallery“attractively modest,” and I believe this to be a fitting accolade for the play. Lonergan isn’t attempting anything revolutionary with this script. It’s simple but it’s also incredibly well-executed. The interplay between characters is so beautifully developed and accurate it does not require any further embellishment.

The Waverley Gallery was published by Grove Press. in 2000.

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“The ACB With Honora Lee” by Kate De Goldi

with illustrations by Gregory O’Brien

I absolutely adored The ACB with Honora Lee. It grabbed me the moment I opened it. I’m always on the look out for books which help children and young adults to understand what it’s like living with Dementia and I could instantly see how this book would appeal to mid-Primary aged children and help them process some difficult issues. Gregory O’Brien’s gorgeous illustrations explode across the inside cover and continue throughout, bringing main character, Perry’s thoughts to life in what look to be a series of colourful mind maps. I particularly enjoyed the way the story and illustrations bring different perspectives to the forefront and yet also compliment each other superbly in this short novel.

Perry is an only child with a very inquisitive outlook. Her favourite word seems to be why. She’s trying to figure out the world around her by constantly bombarding the adults in her life with questions. Sometimes she gets the answers she’s after. Often, she feels as if she’s being fobbed off. Perry has a wonderful relationship with her gran, Honora. She’s been Perry’s go to person but now she lives in a retirement home called Santa Lucia. Perry still visits regularly, accompanied by her parents or more frequently, her childminder Nina and Nina’s son Claude. They not only spend time with Honora but form a kind of community with the other residents.

Within a few chapters it is clear that Perry’s gran isn’t the same as she used to be. Gran is confused and sometimes doesn’t even recognise Perry. Perry finds this a bit distressing but instead of abandoning her trips to Santa Lucia, she tries to find a new way for them to connect. She begins to work with her gran on a school project, compiling a quirky and sometimes confused ABC of the older woman’s life. Through the ACB (as Honora calls it), and time spent together, Perry comes to understand a little more of the illness her gran is living with and finds new ways to bond with her as she now is.

The strength of The ACB with Honora Lee is to be found in the way Kate De Gold allows us to see Dementia through the eyes of a young child. Perry describes and explains things in her own childlike way and I found the tone she takes incredibly reassuring.

“So far, all Perry knew about Gran was her name – Honora Lee- and her age – seventy-six years old – and that she didn’t have a husband or much memory any more, which was why she lived at Santa Lucia and could never get Perry’s father’s name right.”

The book is an excellent resource for children who are learning how to live with a loved one who has Dementia. The tone is upbeat, fun and full of little quirks and yet the book doesn’t shy away from some of the harsher realities of living with Dementia. There are plenty of opportunities presented by the story for talking about the sad and difficult changes Dementia can bring about. However, the message comes across loud and clear in both the written text and the illustrations. A special friend or loved one living with Dementia is still the same special friend or loved one. There are ways in which to continue enjoying your time with them and, if you’re anything like Perry, you might even learn something in the process.

The ACB with Honora Lee was published by Hot Key Books in August 2015