Tag: Carers

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Elizabeth is Missing– Emma Healey

Debut author Emma Healey won the Costa Book Awards in 2014 for Elizabeth is Missing, a clever and gripping novel about a woman who is trying to solve a decades old crime whilst living with Dementia. The novel is narrated by Maud, an elderly lady who is increasingly confused about both the world around her and important events from her past. Maud’s good friend Elizabeth hasn’t come to visit in quite some time and Maud is becoming extremely worried about her. She pesters the GP and repeatedly phones Elizabeth’s son in the middle of the night. She drives her own daughter Helen crazy with constant questions about Elizabeth. Maud’s distress is amplified by the fact that Dementia is blurring the line between past and present. Elizabeth’s disappearance has become muddled in her mind with the disappearance of her older sister Sukey, seventy years previously. Memories of the two women blend and intertwine inside Elizabeth’s head.

“Perhaps I should put a note through Elizabeth’s door. Just to say I’ve been. Just to say I was looking for her, in case she comes back. Dad did that for Sukey.”

Maud is the ultimate unreliable narrator. She can no longer hold her own train of thought and this makes it difficult for the reader to keep track of her investigations as she takes notes, searches for clues and tries to follow leads, hoping to find out what’s happened to Elizabeth and, by default, Sukey. It’s difficult to process which pieces of information offered by Maud are true and which red herrings, or misinterpretations. We’re not sure which case is real and which a figment of Maud’s imagination. Though possessed by the notion that she’s on some kind of urgent quest -a common occurrence in people living with Dementia- at times Maud doesn’t know what she’s trying to accomplish herself.

“Even if I knew what I wanted, how could I ever find it? ‘I’m looking for something,’ I say to the man, ‘I just can’t recall, you know.”

Whilst I have some reservations about the use of Dementia as a narrative device -here, as a vehicle for solving a mystery- and I think the novel’s conclusion is a little too neat, Elizabeth is Missing is still an interesting glimpse into the experience of a person living with Dementia. It’s rare to find a first person narrator with Dementia employed throughout the entirety of the book and the range and scope of Maud’s experience -thoughts, memories, interpretations and dialogue- offers a really comprehensive snapshot of both what it’s like to live with Dementia and the resulting confusion, and how other people react to the condition. For me, the standout moments in the novel are those sections where Maud gives the reader insight into how she’s treated and viewed by her family, healthcare professionals and the other people she comes across. These sections read as extremely realistic and quite illuminating. Elizabeth is Missing is also an infinitely readable novel with a clever, well-structured plot and Maud is a genuinely likable and complex protagonist who I enjoyed spending time with.

Elizabeth is Missing was published by Viking in 2014

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Book Reviews

“Rain Birds” by Harriet McKnight

Australian writer, Harriet McKnight’s debut novel, Rain Birds is set in rural Australia, on the edge of the wild and beautiful Murrungowar National Park. McKnight has a wonderful ability to capture the natural world in her writing and I particularly enjoyed the way this novel interweaves the personal experience of how dementia impacts a couple’s relationship, with themes of global and environmental responsibility. It’s pretty obvious from the outset that McKnight knows and understands the world she is writing about.

Alan and Pina have spent thirty years living together in isolated Boney Point, when Alan begins to develop early-onset Alzheimer’s. Pina feels as if she’s losing contact with her partner as he starts to forget things, lose his language capability and disappear into his own head. Then the arrival of a flock of rare, black cockatoos offers them a means of connecting, both to each other and the moment they’re currently living through. Conservation biologist, Arianna, is also obsessed with the black cockatoos. She’s trying to encourage them back to their natural breeding site before the flock dies out. Pina wants the birds to stay in her backyard where Alan can get the comfort and benefit of seeing them every day. Both women bring their own agenda to the issue of the cockatoos. Neither is being deliberately selfish but there doesn’t seem to be an easy solution to their problem. Either Alan will suffer or the birds will ultimately be put at risk. McKnight uses this small, and very localised dilemma, to highlight much bigger environmental issues. 

Rain Birds is essentially Pina’s story. She’s struggling to come to terms with Alan’s Alzheimer’s, (“I have to stop thinking of him as if he’s already dead,”) and fixates on the black cockatoos as a means of preserving some degree of connection with him. As the novel progresses, she becomes more and more irrational about the birds, losing perspective as she tries to hold on to the one aspect of her life with Alan which she can actually control. 

The novel includes some incredibly honest and very recognisable insights into what it’s like to live with a partner who’s developed Dementia,

“How she followed him around in circles, shutting drawers, finding his jacket in with the crockery, the milk left under the sink with the cleaning stuff, directing him to the bathroom when he couldn’t find it, the tantrums, the anger, the forgetting, always the forgetting. The way it could all turn a woman slowly insane.”

McKnight effectively uses the cockatoo situation as an extended metaphor for all Pina’s frustrations and disappointment. In the specific and personal she finds grounds to explore big universal themes of anger, control and loss. Rain Bird’s a wonderful novel, beautifully written and full of rich descriptions of the natural world. It’s one of the first accounts of Dementia and environmental issues I’ve come across. I sincerely hope to read more. 

Rain Birds was published by Black Inc in 2017 

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“Burnt Sugar” by Avni Doshi

Burnt Sugar is Avni Doshi’s debut novel. It was shortlisted for the Booker Prize in 2020. Set in Pune, India it is narrated by an artist named Antara who is struggling to come to terms with her past as she tries to work out how to care for her mother, who is living with early onset Dementia. This is a painfully honest look at caring for a close family member who isn’t particularly likeable.

“I would be lying if I said my mother’s misery has never given me pleasure.”

Tara has not been a particularly caring mother. Abandoning her loveless marriage, she brought young Tara up in a strange and sometimes frightening ashram, then briefly chose homelessness for the two of them just to spite her affluent parents. Antara has been dragged along on this crazy adventure, for the most part, reluctantly. Now, a fully grown adult and about to become a mother herself, Antara is thinking about her past and some of the bad decisions her mother has made. Unfortunately, Tara doesn’t remember their shared past in the same way. Both women feel the other is culpable for the mess they’ve made of their relationship. But with Tara’s increasing confusion, it’s almost impossible to know who’s telling the truth.

“It seems to me now that this forgetting is convenient, that she doesn’t want to remember the things she has said and done. It feels unfair that she can put away the past from her mind while I’m brimming with it all the time.”

Antara resents the way her mother has brought her up and yet feels compelled to care for her as the Dementia renders her increasingly reliant on others. Tara doesn’t make the process of reconciliation easy. She constantly contradicts her daughter’s take on events and eventually sets fire to her studio, destroying all her artwork. Antara interprets this act as an attempt to erase her identity.

The novel wrestles with complex questions about matriarchal relationships: these women can’t seem to exist without the other, yet also appear to be hell bent on destroying each other. Their narratives are in conflict, yet they also seem to have shaped each other’s stories and their own particular ideas of truth.

“Sometimes I think I am becoming my mother.”

“Reality is something that is co-authored.”

Burnt Sugar also explores the role of women within Indian culture, interrogating class and gender assumptions and how both have evolved over the span of Tara’s lifetime yet still have a long way to go. The novel is rich in cultural description and paints a powerful picture of how Dementia is viewed within a non-Western culture. I particularly enjoyed the scenes describing everyday domestic life and the culture which exists around food. It’s refreshing to read a depiction of someone living with Dementia who isn’t an elderly, white, middle-class woman. I’d like to read more narratives like this. I thoroughly enjoyed Burnt Sugar and found the character of Tara both intriguing and extremely frustrating. I can understand Antara’s reluctance to become her mother’s fulltime carer. A trying person who develops Dementia is usually just as trying as before their diagnosis, oftentimes more so.

Burnt Sugar was published by Hamish Hamilton in 2020

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“The Hard Word Box” by Sarah Hesketh

In 2013, the English poet Sarah Hesketh spent a period of almost five months visiting residents in a residential care home for people living with dementia. She wrote about her experiences, her encounters and the lives of the people she met in this series of moving and evocative poems. The poems are poignant, funny, compassionate and shot through with wonderful insights into how difficult it is to convey the fullness of a person when language and communication begins to fail. Each of the poems is an exercise in bridging the gap between sense and confusion, language and silence, loss and the richness of humanity. The poems included in The Hard Word Box aren’t just clever and inventive. They’re also beautiful pieces of writing which linger long after reading.

The collection begins with a short essay in which Hesketh explains her process, her findings and the ethics she employed in approaching such a complex project. Her warmth and respect for the residents comes across strongly. The poems which resulted from her visits vary in length and form. Some are observational. Some read like prose poem interviews between the poet and the residents. Others contain verbatim phrases lifted from conversations with the residents. Hesketh shapes her own words around these comments so it feels as if the poem is being co-authored and the person living with dementia is being allowed to voice their thoughts instead of just being talked about.

Doreen has a good sense of humour.

Doreen can be a bit rude sometimes (BE GOOD BECAUSE WE
HAVE NO MORE) but staff help her with this.

  • From “Doreen”

Playful wording and humour abounds in poems like “Phyllis’ Instructions for Sex.” Whilst other poems offer a stunning articulation of suffering, grief and loss, rendered in a way which allows the reader to empathise with the residents. “Please don’t ask us to speak/ the hard words all at once.” In other poems Hesketh uses fractured language, line breaks and jarring metaphors to explore the relationship between communication and silence, and the difficulty of voicing people who are losing their own ability to speak.

Everything is so

balled heart. Too much muscle

     in the sound of thinking.

All we want is to be allowed

to be gone.

                                           To fall from this dark like

                brushed white chalk.

  • From “Into the White”

The Hard Work Box is a powerful and incredibly moving testament to a long community arts engagement project. It is a ground-breaking piece of writing when it comes to exploring the relationship between the person living with dementia and the artist attempting to record their experience. There’s a collaborative element present here which is often neglected in poems and stories about dementia. It is clear from reading Hesketh’s work that listening was just as important as speaking when it came to capturing the residents in the entirety of who they are. This emphasis on a holistic present tense understanding of the person living with dementia is eloquently and compassionately expressed in her introduction. 

When I first started working on ‘Where the Heart Is’ I thought my job would be like that of an archaeologist. That I would help people to recover who they had been, and explore new ways to hang on to that. Instead, I realized what was most important, was not that Maureen used to like jazz, or that Bill had once been a butcher, but that Jack tells great jokes, Phyllis likes helping others to the table- that’s who these people are now.

The Hard Word Box was published by Penned in the Margins in 2014

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“The Father” by Florian Zeller

Translated from the French by Christopher Hampton

With a big screen adaptation forthcoming later in 2020/early 2021 I thought I’d revisit French novelist and playwright, Florian Zeller’s incredible play Le Père, (or in English, The Father). Zeller makes bold, creative decisions with this play which explores the Dementia experience of an older Frenchman named André. André becomes the lens through which we see the world. The characters, dialogue, time frame and set of the play are all deliberately ambiguous as Zeller attempts to capture the confusion of André’s experience on stage.

The play itself is set in what André takes to be his Parisian apartment, although it is also at times his daughter’s apartment. Zeller’s stage instructions convey the confused nature of this space.

“Simultaneously the same room and a different room. Some furniture has disappeared: as the scenes proceed, the set sheds certain element, until it becomes an empty, neutral space.”

Scenes repeat with slight variations, additions and subtractions to the dialogue. This makes it incredibly difficult to follow any linear time pattern through the play. The audience is catapulted into André’s world where time means very little anymore. The past is the present is the past and memories repeatedly come back to haunt him, whilst other details, like the death of his younger daughter, seem to be permanently misplaced. Most worryingly of all Zeller employs different actors to play André’s daughter and her partner so when he does not recognise Anne or Pierre, the audience understands his confusion because we do not recognise them either. These people might be speaking Anne and Pierre’s lines, but they no longer look anything like them.

The Father is a simple and yet hugely ambitious attempt at embodying the Dementia experience in a piece of art and allowing it to be accessible to the audience members as they watch the play. It incites a feeling of confusion, disorientation and frustration not unlike Dementia itself. However, it is also shot through with moments of heartfelt emotion and beautiful, poignant language such as the section towards the end of the play, when André, greatly diminished by his illness and the confusing experiences he’s been through, likens himself to an Autumnal tree.

“I feel as if… I feel as if I’m losing all my leaves, one after another.”

I’m so looking forward to seeing Florian Zeller’s own film adaptation of The Father later in the year and am confident that the all star cast including Anthony Hopkins, Olivia Colman and Rufus Sewell will do justice to this powerful play.

The Father was published by Faber and Faber in 2015.

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“Goodbye, Vitamin” by Rachel Khong

There are a number of reasons why I really enjoyed the American writer, Rachel Khong’s debut novel. For one thing it’s very funny. It tackles a relatively serious subject with gravity where gravity’s required and also buckets of humour and wit. Sometimes the humour and pathos are mixed together, as in the following exchange between Ruth and her father, whose Alzheimer’s is beginning to make him confused.

“I’m your daughter,” I say.

“You sound different,” he says.

“How?” I say.

“More sonorous,” is what he says.

Khong isn’t afraid to laugh in the midst of the saddest moments. There’s something very familiar about this as the absurdity of living with Dementia often means experiencing the whole spectrum of emotions simultaneously. The other thing I particularly enjoyed about Goodbye, Vitamin is the portrayal of a person who is attempting to maintain a normal existence even as their Alzheimer’s takes hold. For many people there is a period after diagnosis when they continue to work and live as closely as possible to their normal routine. This is rarely depicted in films or books. Ruth’s father, a much-loved history professor, doesn’t want to stop teaching even though his boss and colleagues have noticed his behaviour’s becoming erratic and have asked him to step down from his teaching role. What follows is an elaborate plan whereby Ruth, conspiring with his students, set up sessions off campus so her father can continue to teach the classes he loves.

“The idea Theo and I plant into Dad’s head is that because we’re learning about the Los Angeles Aqueduct, we should take an educational field trip to go visit it.”

Ruth herself is the narrator of the novel. Her story is recounted in chronological diary excerpts where readers are presented with a snapshot of her personal life alongside her attempts to care for and connect with her dad. Ruth isn’t having an easy time of it. She’s thirty years old, recently single and back home living with her parents. She’s frustrated that there isn’t a miracle cure for either her dad’s condition or the mess she’s made of her life. In the absence of medical remedies she begins to learn that love and being gentle with each other is the best way to navigate this turbulent time. Ruth seems to find it easiest to make sense of the journey her father is taking if she takes each moment for what it is and savours their time together. There might not be much she can do for her father, but she can spend significant time with him.

“Today, I caught you in the garage, eating the peaches from the earthquake kit. I joined you. We drank the syrup and then we drank the packets of water.

Here I am, in lieu of you, collecting the moments.”

This is such a warm and generous wee novel. It’s not without its heartbreaking moments. At one point her father, realising what Ruth’s sacrificing, encourages her to move on with her life and I found this exchange particularly poignant

“You didn’t want me feeling obligated to stay. You said you didn’t want me feeling guilty. You said you didn’t want me seeing you act loony tunes.”

Khong has Ruth respond with sensitivity and quick humour, giving her father a dose of daughterly cheek. It’s in these small and incredibly familiar moments that Goodbye, Vitamin really soars. This is such a realistic picture of a tight knit family dealing with a difficult situation in the only way they know how: food, time, love and taking the piss.

Goodbye Vitamin was published by Schribner in 2017

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“The Latecomer” by Dimitri Verlhurst

Translated from the Dutch by David Colmer

Meet Désiré Cordier, a very unusual kind of hero. Fed up with the drudgery of retired life, hen-pecked by a bossy wife and irritated by his extended family, retired librarian Désiré hatches a cunning plan. He will gradually feign the symptoms of Dementia until he lands himself a place in a retirement home and a much-needed dose of peace and quiet. All goes according to plan. Désiré is able to fake his way through the memory test his doctor sets him and soon finds himself a resident in Winterlight Home for the Elderly.

“On paper it seemed easy enough: I would more or less crumble away like one of those lonely bluffs you see in Westerns. Slowly, but inexorably, with something resembling grandeur, I would blur and gradually disappear in the mist I myself was discharging.”

However, his plan doesn’t live up to expectations. Constantly feigning Dementia isn’t an enjoyable way of living. He’s beset by daily indignities and frustrated at his own limitations. He’s also shocked to discover he’s not the first resident to have come up with a similar exit plan. Plus, the retirement home isn’t as safe as he’d hoped -he’s sharing his living quarters with a war criminal- and Rosa Rozendaal, his childhood crush is too advanced in her own Dementia to return his amorous advances. It isn’t long before Désiré begins to question the wisdom of what he’s done.

Ably translated from the Dutch by David Colmer, Verhulst’s short novel is a darkly comic exploration of life within a retirement home. It’s funny, honest, sometimes brutally so, and full of well-placed observations about the staff, the residents and the visitors. By crafting a protagonist who’s feigning Dementia Verhulst offers the readers a unique insight into how a person with Dementia is treated and perceived by the people around him. In the following section he describes his daughter’s final visit to Winterlight.

“She could no longer bear to visit someone who didn’t recognise her. The only man she was willing to recognise as her father had dissolved in the mists of his own memory. This was going to be her last trip to this den of misery, her final symbolic visit, to round it all off.”

In normal circumstances a person living with advanced Dementia might be incapable of articulating the experience with the insight and eloquence we get from Désiré. The first person narrative is incredibly affecting. By the time we get to the end of the novel and, like Désiré, realise his family and the people who care for him can no longer see him for the person he is, we understand his frustration and empathise with his lack of autonomy. The Latecomer is a clever novel which uses a bold plot device to place the reader firmly in the shoes of a person living with Dementia. As such, I think it’s a really useful read.

The Latecomer was published by Portobello Books in 2015 

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“Unbecoming” by Jenny Downham

Jenny Downham’s Young Adult novel about three generations of women has received rave reviews and I can absolutely see why. Unbecoming is a gripping read from the very first sentence.

“It was like an alien had landed. Really, it was that weird.”

Seventeen year old Katie’s estranged grandma comes crashing into her life in dramatic fashion. Mary has been left alone and in need of care after her partner dies suddenly. Katie knows nothing about the woman who abandoned her mother as a baby and can’t understand why her mum seems so reluctant to welcome this intriguing, imaginative older lady into their home when she’s so obviously in need of help. Katie’s mum has her own reasons to distrust Mary, besides her family is already quite complicated: Katie’s father has moved in with his girlfriend, whilst her younger brother Chris has complex, special needs. Katie herself is having a turbulent summer. Her relationship with her mother comes under strain as she begins to embrace her identity as a lesbian and experiences her first romance.

Mary brings fun, excitement and stories about the past into Katie’s life. She brightens up Katie’s dreary family life as together they work on piecing together the older woman’s memories. But Mary isn’t always easy to live with. Her Dementia means she requires constant care. Sometimes she remembers the past in short, lucid bursts. Sometimes she doesn’t know where she is or how to manage the simplest tasks. 

“Every morning I think I can do things, and by the afternoon it turns out I can’t.”

Mary’s Dementia is at the stage where she understands that something’s gone wrong but doesn’t know how to fix it. She’s prone to wander away from home and sometimes has outbursts. She’s desperate to be reconciled with her daughter and her grandchildren but her scattergun attempts at explaining the past and her own mistakes often lead to more upset. Unbecoming is a novel which questions the very idea of truth. If Mary remembers things one way and her daughter remembers the same incidents differently, who’s to say which version is right and whether the confusion associated with Dementia renders the person remembering less reliable or more inclined to speak the truth without considering the consequence?

“Mary had her version of the time she came to stay and Mum had hers…All the threads bind and twist together. And every time you look it’s different, because stories change in the telling.”

This is an incredibly readable novel. I flew through its almost 450 pages. It explores a whole range of themes -intergenerational relationships, LGBTQ, feminist and mental health issues, alongside Dementia- through the central narrative arc of unpicking the complexities of Mary’s life. The third person narration allows Downham to give us an overview of every character’s perspective and also to dip frequently into the past. The writing is moving and eloquent and the ending, resolved enough to feel satisfactory, yet far from cheesy or forced. There are so many things I enjoyed about this novel but what I loved most is the honest, funny and occasionally irreverent relationship between Katie and her grandma. If anything, Unbecoming is a romance. It’s the story of two women separated by a family rift, finding each other in the nick of time and very quickly falling in love.

Unbecoming was published by David Fickling Books in 2015 

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“An Absent Mind” by Eric Rill

An Absent Mind is a slim novel set in contemporary Canada. It explores the impact of a Dementia diagnosis on a close family unit. The novel opens with the patriarch, Saul beginning to acknowledge his own mental confusion. It moves through his Alzheimer’s diagnosis, the advent of the illness and subsequent decline, his move to a care facility and eventually, both his own death and that of his wife, Monique whom he actually outlives. The story is told from the perspective of five different characters, all of whom speak directly to the reader in first person monologues. We meet Saul himself, a proud and occasionally difficult Jewish man, used to getting his own way, and his longsuffering wife Monique who isn’t even certain she’s made the right decision in staying married for so long to such an overbearing man.

“Given everything, would I do it all over again? Maybe. Maybe not. But I made my choice years ago, and I am almost sixty-six and a grandmother.”

The other monologues are delivered by Saul’s son Joey, with whom he has a troubled relationship, his devoted daughter Florence and the Alzheimer’s specialist who oversees Saul’s treatment and care. The first person sections narrated by Saul himself give an excellent insight into the progress of his illness and how frustrated he is with his situation. It’s not easy for a man as powerful and proud as Saul to watch his autonomy gradually disappear. His accounts of events, lucid at first, become increasingly rambling and confusing as the novel proceeds. Saul’s chapters become shorter as his grasp on language erodes, until the final few chapters consist of nothing but strange composite words, (“Just…hEr as Pretti…Choo fLeur,”) which can be interpreted as meaningful within the context of his story, but are nonsensical to the uninformed. However, what makes An Absent Mind a truly unique reading experience in regards to Dementia, is the way it depicts the collateral damage inflicted upon those close to Saul.

Monique struggles to serve a now vulnerable man who has often made himself deliberately hard to like. Saul isn’t particularly affectionate or grateful. He has always been a demanding man. Now, faced with becoming her husband’s carer, Monique wears herself down physically and mentally trying to look after someone who never went out of his way to look after her. It’s a familiar and very believable snapshot of what many families and partners face when a difficult person develops Dementia. Rill is brave and honest to state so bluntly that an obnoxious person who is living with Dementia will most likely be as unlikable as they were before developing the illness. Joey also struggles with this. His father never tells him he loves him and is constantly putting his son down. Joey finds it hard to love and feel loved by his father. It’s only after Saul loses his ability to communicate that Joey finds a note scribbled in his father’s handwriting, 

“Dear Joey, I never told you while I was alive how much I loved you and how proud I am…”

Rather than bringing some sense of closure, this admission leads Joey to wonder why his father never once, in forty years, uttered these words himself. An Absent Mind is a novel about families and the complex and subtle ways in which people can both love and utterly devastate each other. It’s a novel about missed opportunities and important truths which have gone unsaid, dependency, disappointment and failed expectations. All these issues are present in most families. However, Rill in his novel, exemplifies the way Dementia will exasperate existing problems and expose a family’s fault lines. He paints a bleak but unflinchingly honest portrait of a real family trying to muddle through.

An Absent Mind was published by Lake Union in 2015