Author: Jan Carson

Categories
Book Reviews

“Gratitude” by Delphine De Vigan

Translated from the French by George Miller

Gratitude is the sixth book by French novelist Delphine De Vigan. It’s a slender little novel, I might even call it a novella, and explores one simple idea in a really beautiful and tender way. Michka is an elderly lady living with dementia in a residential care facility. As her life draws to a close and her mind becomes increasingly confused she becomes more and more intent upon tracing the young couple who hid her from the Nazis as a child. She wishes to express her gratitude to these people before she dies. Marie is a young woman who visits Michka in the care facility. She’s pregnant with her first child and as she transitions into her new role as a mother she becomes more and more grateful for the way Michka cared for her as a child when her own mother was incapable of giving her the support she required. Jerome is a speech therapist who visits Michka twice weekly in order to help her retain her fading language skills. He grows fond of the elderly lady and, as she deteriorates, begins to rethink his broken relationship with his own father. Michka teaches him an important lesson about seizing every opportunity to make amends before it’s too late.

I really enjoyed this little book. Each of the characters is simply but powerfully drawn. The emotions are neither over nor under-played. I particularly appreciated the way De Vigan does not shy away from the more difficult aspects of ageing and dementia. Her story encourages the reader to sit with grief and sadness rather than try to avoid it. “Sometimes you need to acknowledge the void left by loss. Abandon distractions. Accept there’s nothing more to say.” And yet it is also an incredibly uplifting book. There is so much warmth and genuine fondness between the characters it is impossible not to acknowledge that Michka’s experience of her last days and weeks is anything other than meaningful. As the title would suggest, this is a novel about being grateful for the life you have been given, even when that life doesn’t turn out the way you’ve expected. It’s about finding peace in the midst of turmoil. It is a novel shot through with hope.  

I also appreciated the close exploration of how dementia has impacted Michka’s use of language. As a speech therapist Jerome is able to give the reader an insight into the aphasia and linguistic confusion Michka has to navigate every time she tries to speak. It’s intriguing and powerful in the English translation. I only wish my French was good enough to read it in the original version. This isn’t a high concept novel. There’s not a terrible amount of plot. It’s all about De Vigan’s exquisitely drawn characters and the way they pivot around each other, grateful for their friendship with Michka and determined to make the most of it.

Gratitude was published by Bloomsbury in 2021 

Categories
Book Reviews

“May” by Naomi Kruger

Naomi Kruger’s beautifully written debut novel May is a story about how we remember the past, what we choose to hold on to and what must be let go. It centres around May, an elderly women living with dementia in a residential care facility. The novel is structured around a single day in May’s life. May’s own voice is the leitmotif running throughout the novel. After each chapter we hear fragmented snippets of her thoughts which allow us an insight into the confusion and cacophony of different memories and ideas all competing for May’s attention.

The chapters of the novel are narrated by a handful of different people who’ve had an impact on May. We hear from her daughter, Karen, her grandson, Alex, May’s husband, Arthur and Sana, the young female carer who’s grown close to her in the nursing home. Each of them gives us a little more understanding of May’s story and helps us piece together both who she was and who she now is. Kruger also slowly reveals a decades old mystery which May has become more and more obsessed with since her move into the nursing home. The multiple narrative voices work well here. They’re each strong and developed enough to feel like complete stories in their own right. Though they patch together May’s personal story, they also show how each of the characters has been influenced and impacted by their relationship with her. I particularly appreciated this. Often in dementia narratives, it falls to secondary characters to shape and establish the character living with dementia. Here the secondary characters have been just as impacted by encountering May as she is shaped by their testimonies.

May is an exquisitely written novel. The prose is clean but warm. It doesn’t sentimentalize the family’s relationship with May or approach her illness too emotionally. However, the fondness is apparent, particularly in her grandson’s and Sana’s narratives. I loved the humour Kruger brought to the scenes which showcase interactions with the residents of the nursing home. May is also notable for its exploration of the fractured thought processes of someone living with advanced dementia. We are given multiple opportunities to see how May’s thoughts have become confused and distorted. Kruger does a stellar job in translating this confusion into words. 

May was published by Seren Books in 2018 

Categories
Films

The Roads Not Taken

In English director Sally Potter’s most recent feature, The Roads Not Taken, the first discernible words uttered by the main character, are “everything is open.” In a sense this statement, mumbled by Leo, a writer living with Dementia, (perfectly portrayed by Hollywood A-Lister, Javier Bardem), gives the viewer a quick synopsis of the entire film. The screenplay, (also written by Potter), jumps backwards and forwards between three different points in Leo’s life. We see him as a younger man, married to Salma Hayek and mourning the death of their son, in exile from his second marriage, writing alone in Greece and finally as an older man, confused and depleted by the illness, being guided through a single day’s errands around the city in the company of his daughter Molly, (sensitively played by Elle Fanning). Everything is open at the same time in this movie. Time is fluid as Leo’s memory leaps and flits from one period to the next. Potter does a masterful job of capturing the eternal present of living with Dementia where the past can seem just as real and believable as the moment the person is actually living in. I particularly enjoyed the way the movie skipped seamlessly between the various stages of Leo’s life, leaving much unsaid, mumbled or deliberately confusing, so the viewer empathises with the confusion experienced by Leo and his family.

The strongest section of The Roads Not Taken is undoubtedly the strand set in Leo’s present. The relationship between Leo and his daughter Molly -who has taken on much of the carers role- is believable, warm and occasionally heart-breaking. We see Molly’s distress when her father wanders off in the middle of the night. We see her struggle to understand his speech and promise to, “try harder to see it from your point of view. To see what you see.” We see her frustrated when she loses out on a big job because of her responsibilities with her father. We see her irate at the way others treat Leo, speaking over him and patronising him. But what comes across most strongly in Potter’s depiction of their relationship is the way father and daughter continue to find small moments of connection even as the illness forces them apart. There’s a particularly poignant scene in the bathroom at the dentist’s when, having soiled his own trousers, Molly gives her father hers. Even in the midst of humiliation and confusion there are moments when this movie manages to laugh and yet there’s no schmaltzy ending here, no neat conclusion or moment of epiphany. Leo and Molly’s situation is just as complex and difficult at the end of their day together as it was in the opening credits. Neither does Potter attempt to deify Leo or paint Molly as a saint. Both are flawed, occasionally failing characters. This is what makes them believable. 

Bardem is wonderful in this movie. He has a huge presence onscreen and the sheer bulk of his body, though slowed and atrophied by Dementia, refuses to be relegated to the ranks of a shadowy invalid. He is enormously present throughout. The camera often lingers painfully close to his face, exposing every wrinkle and pore. We are forced to look straight and deliberately at Leo as a person, present with his illness. Here, it is impossible to ignore the person living with Dementia. The Roads Not Taken takes an unflinching look at Dementia and our treatment of people living with the illness. To some extent, this unflinching personal gaze makes the viewer feel culpable in the way society has othered, dismissed and ignored the Dementia experience. I don’t think this is any bad thing.

The Roads Not Taken was directed by Sally Potter and released in the UK in September 2020 

Categories
Events

Dementia Fiction Writers’ Chat

In September we’ll be hosting a fantastic two day Dementia Fiction Festival. We’re still hopeful about having events in person at the Accidental Theatre building in Shaftesbury Square, Belfast but we may well end up holding a hybrid event both simultaneously online and in person for those who live close to the theatre. Watch this space for more details later in the year. As we get closer to the Festival we’ll be thinking and planning a range of great workshops and panels exploring the themes and issues pertinent to writing about dementia. Our outreach officer Jan will be consulting with writers, academics, representatives from umbrella organisation both within the dementia and literary sector and, most importantly, people living with dementia to ensure the programme is as useful and comprehensive as possible.

On Wednesday past we had our first online Zoom session, consulting with a group of writers who have explored or are exploring dementia in their work. We were keen to hear about their projects and to find out what topics and themes they’d like to see covered at the festival. We were absolutely delighted to have fourteen enthusiastic, engaged writers from all across the UK, Ireland and even South Africa, join us for the chat. The group included novelists, short story writers, non-fiction writers, poets, play writes and screenplay writers. It was quite an eclectic bunch.

After each writer had presented an overview of their own project and the particular themes they’re engaging with we enjoyed a great discussion covering issues like maintaining a balance between negativity and positivity in writing about dementia, the importance of research, diversity and lack of diverse representation, language and form and a host of other really interesting issues. We concluded the evening with an opportunity to share useful books and resources. We hope to host another session in early May. If you’d like to join the chat drop Jan an email at jan.carson@qub.ac.uk

Categories
Book Reviews

“The Boiling Point for Jam” by Lynda Tavakoli

The Boiling Point for Jam is Northern Ireland-based poet, Lynda Tavakoli’s debut collection. It covers a wide range of themes including war, personal loss, ageing, the natural world and Tavakoli’s connection to both Fermanagh and Tehran. The poems are both assured and characterised by a lightness of touch which often had me re-reading lines a second and third time as an image or metaphor slowly impacted with devastating effect.

The collection begins with a handful of poems which explore both her mother’s experience of dementia and her memories of her parents. The second poem in the collection, “Dead Dog” shows her mother distinctly unimpressed by a stuffed dog which has been brought in to the residential care unit to amuse the residents living with dementia, 

‘That’s a dead dog,’ you say,

The words raged from that part of you

Still holding and holding on.

It’s shot through with dark humour and Tavakoli’s signature unswerving gaze. Small, deft touches such as the repetition of the line, how you love my coat/and how you love my coat, reveal her ability to not only capture snapshots of her mother’s life with dementia, but also place those moments under an analytical poet’s gaze. There’s both beauty and profundity to be found next to the deep sadness inherent within these poems. Lines like,

this posse of souls,

eyes-eternity filled already,

struck be as both deeply upsetting and also incredibly poignant. Tavakoli tackles her subject with a great deal of respect and a sense of shared humanity. The poems which deal explicitly with her mother’s dementia are interspersed and set beside poems exploring her memories of both her parents, so the reader gets a real sense of the fondness which exists between the poet and her mother and the deep connection they have. When, in “Is This What I Do” she writes,

I say your name, see the reluctant

wakening of your eyes, the disappointment

you had not slept your way to heaven.

You have told me this before.

there is no judgment of her mother’s despair, no sense that they are meeting as anything but equals. It is the way Tavakoli records her mother as suffering, but not diminished as a person, which really struck me as I read these poems. I found them incredibly moving and would gladly have read quite a few more. 

The Boiling Point for Jam was published by Arlen House in 2020 

Categories
Events

Online Creative Writing with the Alzheimer’s Society

Over the course of the next few months we’ll be collecting contributions for our forthcoming “In Our Own Words” pamphlet which will provide a vehicle for people living with dementia to share their own thoughts and experiences. This pamphlet will be circulated amongst healthcare professionals and other people working in areas where they have regular contact with those living with dementia. It’s hoped the pamphlet will increase awareness and begin conversations about what it’s like to live with dementia every day. (More of this later. Watch this space).

In the run up to the pamphlet’s publication, our Outreach Officer, Jan Carson has been facilitating some online writing workshops with people living with dementia. For the last two sessions we’ve been graciously hosted by Julie McCaughey and James Erskine of the Alzheimer’s Association who introduced us to some of the people who regularly participate in their online conversation groups. They proved to be an extremely chatty and very imaginative group of individuals. It’s fair to say we did more laughing together than actual writing but we still managed to come up with some remarkable work.

Over two 90 minute Zoom sessions, 16 participants worked with Jan to share their stories, write and chat through ideas. We listened to some readings together: two postcard stories and a Billy Collins poem. The workshop’s theme was objects. Each participant brought a special object and developed a piece of writing, explaining what it was and it’s significance. We found out about travel experiences, family dynamics, favourite pets and memories of work amongst other things. We were even treated to an impromptu performance on the Banjo-lele (which we were reliably informed is a cross between a banjo and ukulele. Whatever it was, it sounded great).

Both sessions were an absolute treat and we’re very grateful to Julie and James who worked hard to make them possible. It’s not easy to find means of connection and community during these strange Lockdown times but our hours together felt almost as warm and companionable as an in person workshop might have done. We’ve been in a good mood ever since. We’re looking forward to sharing more information about the pamphlet soon and some details on how you can get involved.

Categories
Book Reviews

“Minor Monuments” by Ian Maleney

Minor Monuments is a collection of personal essays by Dublin-based writer Ian Maleney. They’re all set around his family’s small farm on the edge of a bog a few miles from the River Shannon. They explore issues around belonging, place, home, memory and nature and weave together Maleney’s personal experience with his musings on literature, art and, most frequently, sound. Maleney uses sound recordings to capture and explore the landscape of his childhood. Interspersed throughout the essays is the story of his grandfather, John Joe’s diagnosis and experience with Alzheimer’s.

“I wanted to listen hard to his final emergence; to capture his life in the last stage of becoming – to record the person still forming even as he began, contrapuntally, to unravel.”

Minor Monuments follows John Joe right through to his death and funeral. As the older man slowly loses his memories and connections to the landscape, Maleney is questioning his own sense of belonging and how he’s come to think of his home. He spends as much time as he can with John Joe, documenting his stories and paying careful attention to how he interacts with the world around him. At several points in the book, I had the sense that I was encountering a kind of teacher/disciple scenario, with Maleney patiently waiting for his grandfather’s lived inheritance to pass on to him.

“A wake like John Joe’s is not just an opportunity to remember these people and their stories, but also a chance to share and build on those memories, to pass them on and to bind them closer to the people who are living out their own stories in the same place.”

The prose is neat and sparse but imbued with warmth. It’s like reading someone’s meandering thoughts as they pick their way through a difficult time. It’s impossible not to imagine the two men -one old, one young- sat together companionably, their very different world experiences stretching between them, their mutual fondness apparent throughout. This is such a gentle book. It’s deeply respectful and extremely attentive, as you might expect from a writer used to recording sound.

I also deeply appreciated the portrayal of a rural, working man with dementia. It’s rare to see this character portrayed in literature and yet I frequently come across older men and women, like John Joe, who develop dementia whilst living in farmhouses and on land that’s been in their family for generations. For these people, a move to residential care can be nothing short of earthshattering. They are intrinsically bound to their land.

I love this book. It was my favourite non-fiction read of 2019 and I’ve pressed it upon many people since then. Maleney writes with honesty and tenderness, always holding his grandfather as an equal. There’s an awful lot of wisdom in both what he writes and how he writes it. These essays are rich with humility.

Minor Monuments was published by Tramp Press in 2019

Categories
Book Reviews

“Grandpa’s Great Escape” by David Walliams

I don’t make a habit of criticising other author’s work. I know how difficult it is to write a novel. I know that the beauty of a book is often in the eye of the beholder and everyone has different tastes. What gives me the right to make a value judgment about a novel? However, every so often, a book comes along which leaves me so riled up I’m afraid I can’t keep from being critical. 

I’ve never read any of David Walliam’s kids’ books before. I knew they were incredibly popular – NUMBER ONE bestsellers, according to the cover- and I also knew many of my friends and colleagues in the kids’ book world had reservations about both Walliam’s work and also the increasing popularity of children’s books written by celebrity authors. I’m not going to wade into that argument, but I do think they are voicing legitimate concerns and, if Grandpa’s Great Escape is similar to the rest of Walliams’ work I’d have to say I have huge issues with his lazy and borderline misogynistic portrayal of women, his lazy, cliched, offensive depictions of BAME characters and the slightly snide and sneery way he writes about working class people. Putting these reservations aside for the moment, however, I will attempt to focus on Walliams’ exploration of dementia in this novel.

Dementia is not mentioned by name in Grandpa’s Great Escape but as the novel begins with the line “one day Grandpa began to forget things,” and Walliams goes on to outline how he’s taken to wandering off at night, confusing the past with the present and does not recognise close family members, it’s fair to say Grandpa has developed dementia. The novel’s plot outlines his adventures with his grandson Jack. Swept up in an extended delusion that he’s still living in the days of WW2 when he served his country as a fighter pilot, Grandpa runs away from home, hides out in a spitfire in the Imperial War Museum, is incarcerated in an old people’s home which he mistakes for a Prisoner of War camp, leads a mass break out from the home and eventually steals a spitfire from the Imperial War Museum which he flies away in. The plot is quite frankly absurd, but it is a children’s book and I’m all for wild flights of fancy in literature aimed at both children and adults. The problem here is the tone. Most of the outlandish events are written with such flippancy that the suspension of disbelief disintegrates instantly. Walliams has often been accused of being diet-Dahl but he lacks Dahl’s ability to believe his own magic. The made up stuff feels made up and I doubt it would make it past the discerning imagination of most eight year olds. It is badly written nonsense.

I’d be annoyed if this was all Walliams was offering his readers, but I think Grandpa’s Great Escape is so much worse than a poorly written piece of children’s literature. It’s attempting to address an important issue; presenting a character with dementia to countless young readers who might well have a grandparent or loved one living with the illness. As such, it’s unforgivable. Grandpa’s dementia is like no dementia I’ve ever encountered in almost fifteen years of working in this area. He can’t remember his family, confuses times and dates, forgets things and yet manages to mastermind elaborate escape plans, fly a spitfire plane, enter into complicated conversations and at all times remain fastidiously and neatly dressed in full army regalia. It’s quite clear from this portrayal that Walliams has done no research at all into how dementia would actually impact an elderly man or what effect the condition might have on his young grandson. Furthermore, the depiction of the residential care facility Grandpa’s moved into is terrifying. He’s drugged, physically abused by carers and isolated from his family. If I were reading this novel, as a young person whose grandpa had dementia, I’d be both terrified by the possibility he might be incarcerated in a Colditz-style care home and also full of the false hope that he might make a miraculous recovery from his illness. 

At best this book is badly written. At worst it’s downright harmful and instils a false narrative about dementia. I wish all those children, (or perhaps parents), who’ve made it a NUMBER ONE bestseller had instead picked up one of the amazing books for kids I’ve previously highlighted on the blog. 

Grandpa’s Great Escape was published by Harper Collins in 2015 

Categories
Films

Falling

Falling is actor, Viggo Mortensen’s debut effort as both a writer and director and it is a stunning accomplishment. Mortensen casts himself as John, a successful pilot, living in California with his husband and their adopted daughter. The movie begins, (in quite shocking fashion), with a scene on a plane. John is flying home from the Midwest with his father, Willis, (Lance Henriksen), when the older man’s dementia causes him to forget where he is and create a scene. Willis is in California to look for a smaller property as he transitions away from the large farm he’s no longer capable of looking after. However, nothing goes to plan during his visit: he manages to offend his daughter, played by Laura Dern, forgets he’s agreed to move house and is so belligerent and offensive he insults almost everyone he comes into contact with.

The film moves backwards and forwards between contemporary time -where Henriksen does an incredible job of portraying an older man who is stubborn, angry and ultimately afraid of losing his own autonomy- and the past -where Sverrir Gudnasson plays a much younger version of Willis who is not yet living with dementia but is equally stubborn, angry and intent upon wielding his authority over his family. Mortensen’s portrayal of John is notable for his forbearance and his measured approach to his father. He maintains the same patient demeanour throughout as his father rages, delivers homophobic and racist insults and humiliates him at every turn. Mortensen’s compassion is so marked it makes the moment when he finally loses his temper -railing against his father for years of abuse- one of the most powerful scenes in the film.

It’s so refreshing to come across a narrative which explores the difficult subject of how to care for someone who is not nice and never has been. This topic is rarely covered in books and movies though, in my experience, it’s reasonably common to find someone caring for a family member who has dementia despite a fractured or even abusive relationship. Mortensen handles the material with sensitivity, but he’s also unflinching when it comes to including the harrowing details. I also appreciated the way he resists stereotyping Willard. Yes, this man is a horrible, racist, homophobic, misogynist but he’s also fond of his granddaughter and displays genuine affection for her. This is a difficult watch but a necessary one. I’d thoroughly recommend checking it out. 

Falling was written and directed by Viggo Mortensen and released in the UK in February 2021

Categories
Book Reviews

“The Twilight Years” by Sawako Ariyoshi

Translated from the Japanese by Mildred Tahara

First published in Japan in 1972, Sawako Ariyoshi’s novel, The Twilight Years was not translated into English for almost a decade. It is very much a period piece, beautifully written and faithfully translated, albeit a little dated in terms of its outlook and attitude. The novel’s main protagonist is Kyoko, a middle-aged woman who lives with her husband and teenage son in a small house in Tokyo. Her elderly in-laws live in a purpose built bungalow on the other side of the yard, although she is not particularly close to them. This changes when her mother-in-law dies unexpectedly and her father-in-law begins acting strangely. Shigezo is diagnosed with senile dementia and becomes increasingly dependent upon his daughter-in-law for care and support.

The writing is exquisite. Ariyoshi gives us a stunning snapshot of family dynamics in a modern 1960s middle class home. The novel says as much about changing attitudes to the role of women as it does about how dementia is viewed. Kyoko is expected to be solely responsible for her father-in-law’s care, including sleeping in the same room as him once he begins to wander off, bathing, toileting and feeding him. She’s also responsible for maintaining the house and feeding her family and still must manage to hold down a day job. I had to keep reminding myself that this was a portrait of a different time as I found the men’s attitudes so utterly deplorable. There is no sense of sharing responsibility for elderly care. Looking after the sick and ageing is not considered a worthy role for a man.

There’s also no question of bringing in outside help. Shigezo is not eligible for regular caring support. The specialised residential care units are all oversubscribed. His only option is a horrific-sounding mental hospital, although Kyoko is advised to avoid this option. She’s repeatedly reminded that an older person should be looked after at home by his relatives. There’s an interesting paradox at work in this novel. Older people are to be respected. Their families must honour them by caring for them in their final years. And yet, the rhetoric around ageing is quite disturbing. As the average life expectancy rises in Japan, the younger people are horrified by the reality of growing old. Shigezo is described as a burden and disgusting and on several occasions, younger members of his family express the belief that they’d rather kill themselves than end up living as he lives. At times these passages make quite hard reading. The Twilight Years is a testament to a different time. The protagonists are many years away from understanding the complexities of dementia or how a person might live well with the illness.

However, it’s not an entirely depressing novel. There are moments of simple beauty and times when we’re given an insight into more positive aspects of elderly life in Japan. I also loved the way Shigezo’s relationship with his daughter-in-law progresses and changes throughout the novel. Kyoko has always disliked and distrusted the old man but as her caring responsibilities place her in intimate proximity to him she slowly begins to form a connection and by the time he finally passes away, is incredibly fond of her father-in-law.

The Twilight Years was published by Peter Owen: London in 1984