Tag: Early Onset

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Book Reviews

“The Story of Forgetting” by Stefan Merrill Block

The Story of Forgetting is Stefan Merrill Block’s debut novel. It is a sprawling work which merges realism and fantastical elements in a story spanning hundreds of years and many generations of the same family. During its best moments the storytelling is beautiful and captivating. At other times the novel feels a little unsure of itself and disjointed. There are so many strands to the narrative it seems unclear what Block is trying to accomplish. 

Three separate storylines are interwoven throughout the novel each of which follows a member of the same family line as they deal with the implications of a rare (fictionalised), version of hereditary early onset Alzheimer’s. We meet Millicent Haggard, an English emigrant who brings the strain of the illness to Texas when she moves to America in the early 19th Century. Abel Haggard, an ageing hermit who is holed up alone on a sprawling Texas after early onset Alzheimer’s has claimed his twin brother. And fifteen year old Seth Waller, Abel’s grandson who is trying to trace the roots of his family’s genetic illness after his mother is diagnosed with early onset. The novel also incorporates a family folk tale  -passed from one generation to the next- about a fictional land called Isidora where people are free of the sorrows of memory.

As a concept The Story of Forgetting is really interesting. I’m a magical realist myself and always drawn to writers who used the fantastical as allegory and metaphor in their work. However, whilst the allegory of Isidora is employed in quite a heavy-handed way throughout this novel, it just never seems to connect properly with the narrative. Clearly Block put a lot of effort into the research for this novel. The notes at the close of the book list his reading and research. I thoroughly respect writers who put the hard work into learning about dementia before they attempt to write about the illness in a fictional context. There’s a lot of pseudo-science woven through the novel and at times I did feel it distracted from the characters and the flow of the story. The characters of Abel and Seth are the parts I enjoyed most here and they felt somewhat overshadowed by both the fantastical elements and the clumsily deployed pseudo-science. I also struggled a little with the language Block used to describe Alzheimer’s. It’s consistently referred to as a familial curse and there’s no attempt to explore the possibility of living well with a dementia diagnosis. Some of the portrayals of people living with dementia feel really accurate but pretty hopeless which sits at odds with the whimsical, fantastical tone of the novel. The Story of Forgetting is a decent first novel with some really interesting ideas which ultimately failed to take off for me.

The Story of Forgetting was published by Faber and Faber in 2008 

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Book Reviews

“Happiness” by Aminatta Forna

Happiness is definitely a London novel. The city is as much a character in the book as the two main protagonists around whom the plot resolves. Attila is a recently widowed, Ghanaian psychiatrist, visiting London to present a paper about trauma at an academic conference. Jean is a recently divorced American who is spending some time in London whilst conducting an extended study into urban foxes. The two, quite literally, bump into each other whilst crossing Waterloo Bridge and strike up a friendship which eventually becomes a relationship. As the novel progresses Jean helps Atilla search for his niece’s missing son, mobilising the network of volunteer fox-spotters she’s developed across inner city London. The people who populate this novel, like the foxes Jean tracks and the traumatised individuals Atilla has worked with in the wake of various conflicts, exist on the margins of society and yet are very much interdependent and reliant upon each other for survival. Forna is asking her readers to consider questions around co-existence and community.

Whilst in London Atilla also takes every opportunity to visit his former lover and lifelong research partner, Rosie who is living in a residential care facility. Rosie has developed early onset dementia and is increasingly incapable of recognising Atilla when he visits though she retains some motor memory of their physicality. Atilla is determined to find better care arrangements for Rosie. He’s concerned that the nursing home staff aren’t being as vigilant with her care as they could be. In Atilla’s absence, Emmanuel -the carer whom Rosie had been particularly close to- has been fired and she’s been unable to bond with anyone else. Atilla’s particularly concerned about Rosie’s loss of appetite and disinterest. She isn’t receiving much stimuli or attention in the home. He conspires to set her up in her own apartment where he will pay Emmanuel to be a live-in carer. This plan never comes to fruition as Rosie’s condition deteriorates quickly and she eventually dies. Forna’s depiction of dementia only takes up a small amount of the novel but it’s significant for its portrayal of how care staff are treated and the pressures they face within a residential care setting. On the whole it’s an accurate depiction of dementia : Rosie exhibits ongoing confusion, an inability to tend to her own physical needs and, by the novel’s conclusion has become occasionally violent. Forna intersperses these darker snapshots of the dementia experience with moments of genuine fondness and even levity between Atilla, Rosie and Emmanuel.

I thoroughly enjoyed Happiness. The metaphor of the fox community which runs throughout the novel exists as a perfectly drawn exploration of interdependence between all the living beings who call London home. These complex ideas of community, connection and dependence also exist in the care setting which Forna gives us a glimpse into

Happiness was published by Bloomsbury in 2018 

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Book Reviews

“Still Alice” by Lisa Genova

Many readers will have come to Still Alice via the 2015 big screen adaptation starring Julianne Moore in the title role. Moore, quite justifiably, won a Golden Globe for her portrayal of Alice, the university professor, wife and mother who finds herself diagnosed with Dementia at the relatively early age of fifty. Genova chooses to focus her novel on a reasonably rare type of Alzheimer’s which can be passed genetically from parents to children. A large part of the novel explores the relationship between Alice and her three children as they decide whether to have a genetic test and how they’ll deal with whatever the results turn up. The Dementia also places strain upon Alice’s close family ties as her children and her husband have to learn how to navigate her rapid decline, repositioning  themselves as carers when they’ve previously been so dependent upon her. The third person narration offers us small glimpses into their confusion, disappointment and anxiety though most of the novel is focused on Alice. She is the hero of this quest.

I’d argue strongly that Still Alice is a quest narrative with much of the novel exploring ways in which Alice can find a way triumph over her diagnosis. You might argue that the possibility of suicide is introduced earlyish and revisited later when Alice is too confused to follow her own emergency exit instructions and consequently continues living by default. However, even the idea of an end of life plan could be seen as a kind of quest, with Alice retaining autonomy over her own existence. Genova is determined to find meaning and potential in the midst of Alice’s difficult story. A gifted public speaker and academic by trade, Alice gives a paper at a conference on Dementia, reminding the reader that she is still herself and can still contribute to society in spite of her diagnosis. Alice is also portrayed advocating for people living with Dementia and beginning a kind of support group for those diagnosed with the condition. The meaning is clearly implied. Alice is still an active and useful member of society. She is, in her own way, making Alzheimer’s work for her.

At several point, most notably later in the novel, Genova explores the complex tensions inherent within how Alice is viewed by the people around her. Her family are desperate for her to remain active, engaged and essentially, still herself. And yet, they’ve already begun the process of infantilising her as their roles as carers begin to trump their previously dependent roles.

“They talked about her, in front of her, as if she were deaf. They talked about her, in front of her, without including her, as if she had Alzheimer’s disease.”

Alice’s decline is rapid and brutal, Genova dates her chapters so the reader can see just how quickly the disease progresses over a period of two years. As the novel concludes Alice’s observations and interpretations about the world around her become less sophisticated, and in some ways, less anxious. By the final chapter, she’s lost the ability to recognise her own daughter and yet seems to be more peaceful than in the opening chapters where her mental confusion was a constant distress. 

“Everyone walked, busy on their way to where they must go. She didn’t need to go anywhere. She felt lucky about this.”

It’s a comforting way to conclude a novel about a woman whose life has been gradually erased. It’s hard not to wonder whether Genova, compromises accuracy, to give her readers a satisfying conclusion. The novel’s ending raises some of the biggest questions implicit in all serious attempts to write about Dementia: how cognisant is the person living with Dementia, especially towards the end of their journey? And, if people living with Dementia are relatively cognisant, even late into their diagnosis, is it less troubling for the rest of us, as friends, family members and interested bystander, to simply pretend they’re not?

Still Alice was published by Simon and Schuster in 2007 

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Book Reviews

“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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“The Things We Keep” by Sally Hepworth

For some reason the vast majority of novels and short stories which address the subject of Dementia seem to be focused upon the experience of elderly white women. There are some notable exceptions. However, there is a definite lack of diversity in fictionalised writing about Dementia. As such Sally Hepworth’s The Things We Keep reads like a real breath of fresh air. It focuses upon a young forty year old woman named Anna, who develops early onset hereditary Alzheimer’s and decides to leave her marriage and check herself into a residential care facility so she won’t become a burden on her family. 

Rosalind House is much like every other care facility; the majority of the residents are quite elderly. However, Anna soon befriends Luke, another young resident who is also living with early onset Dementia. The two begin a relationship which quickly becomes sexual and subsequently discover that living with Dementia has removed much of their autonomy. They are no longer allowed to make decisions about their relationship or their bodies. Anna’s brother, concerned about her welfare, insists upon keeping them separate and the care staff are forced to comply with his wishes. This decision soon begins to have a major impact on Anna’s mental and physical health. 

Although The Things We Keep isn’t the kind of novel I would normally read, I enjoyed it immensely. It’s well-written, funny and touching, moving backwards and forwards in time and employing three first person narrators -Anna, Eve (the resident cook), and Eve’s young daughter, Clementine- to help us piece together the events which have led up to Anna’s incarceration in her own room and the depression she’s suffering from. The style might be light and zippy but the themes explored in this novel are incredibly complex and hard-hitting. It asks huge questions about whether people living with Dementia are capable of loving and being part of healthy relationships.

“But even if they loved each other once, they can’t really love each other now, can they? How can you love someone you don’t remember?”

It wrestles with questions around power of attorney and who gets to decide what’s in the best interests of a person living with Dementia. It addresses issues of autonomy and the lack of autonomy often experienced by people living with Dementia. It explores the thorny subject of sexual consent and takes an honest, unflinching look at the depression and mental health issues associated with Dementia. It also does an amazing job of exploring the disparate responses to a Dementia diagnosis with Luke and Anna both reacting to their illness in very different ways.

It’s wonderful and really refreshing to see all these important questions addressed in such an open, natural way although I will say the final chapter of the book felt a little too neat and resolved for me. I’d have preferred a more complex, incomplete and, arguably more believable, ending to Anna’s story. If this had been a literary fiction novel, rather than commercial fiction I think it might have ended in a more inconclusive fashion. There’s a sense here that even though Anna’s story is far from a fairy tale she’s still being offered a version of the happily ever after ending which I don’t think would actually happen under these circumstances. The Things We Keep is still a great read though, and a welcome addition to the canon of Dementia fiction, adding a much need dose of diversity.

The Things We Keep was published by Pan Books in 2016 

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Book Reviews

“Summerwater” by Sarah Moss

Summerwater is English writer, Sarah Moss’s seventh novel and occupies familiar territory. Moss writes particularly eloquently about the complicated and often fractured relationships which make up the nuclear family. In Summerwater her gaze falls upon a handful of different families who have chosen to spend -what appears to be the wettest summer ever- in a chalet park in the Scottish Highlands. There’s nothing much to do and little means of escape with the rain pouring down incessantly. Trapped inside their tiny chalets, the characters in Moss’s novel begin to interrogate their own family dynamics and closely observe how the other families are navigating this same bleak experience. 

Set across the course of a single day which ends tragically around midnight, each chapter in Summerwater explores a different character’s point of view through a close third person narration. As with all of Sarah Moss’s writing this is a tightly observed and incredibly effective and affecting piece of writing. Moss excels when she explores what it means to be human in community and the dreadful isolation which can still be felt within a family unit. Her writing is shot through with little vignettes of family life which are oh so familiar, and rendered with warmth, wit and dignity. (I especially loved her description of Justine attempt to wrestle her way into a sports bra and almost dislocating her shoulder in the process).

Early in the novel we meet David, a retired doctor who is holidaying in his privately-owned chalet with his wife, Mary. From David’s narrative we begin to piece together that Mary is most likely displaying the early symptoms of dementia whilst David is doing his best to set his professional judgment aside and convince himself there is nothing wrong with her. Later in the novel, Mary gets a chapter to herself. The way she thinks about and articulates her growing confusion is a particularly interesting example of a character whose inner life is at odds with the outer image she’s attempting to portray. Mary has just become aware of her condition. She is beginning to misplace nouns and confuse old memories. Though willing to acknowledge that something’s wrong, she is just as reluctant as her husband to take steps towards dealing with the problem.

“You mind your own business, she wants to say, but she says, oh, just going through my bag, it’s getting a bit heavy. Looking for the thing. Looking for the word for the thing. He’d only worry, or take her off to the doctor, and they can’t do anything, can they, about -well, about this kind of thing. If that’s what it is.”

Like all the characters in Summerwater, David and Marys’ story highlights a fundamental failure in communication. None of these characters are being honest with each other. In David and Mary’s case, they’re not even being honest with themselves. And if language and conversation are already failing this couple so early in their experience of Dementia, it does not bode well for their future together. Whilst the section which engages with Dementia only occupies about a fifth of Summerwater it’s still an essential compelling read, which manages to capture in 200 short pages, the essence of human disconnection. Tellingly, Mary’s chapter in the novel, ends with these stark, but poignant lines.

“He is still looking at her.

She does not look back.”

Summerwater was published by Picador in August 2020

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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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“We Are Not Ourselves” by Matthew Thomas

We Are Not Ourselves was one of the very first Dementia narratives I encountered and it remains one of the best examples of writing about Dementia I’ve come across in any novel. It is an epic saga, in the old-fashioned sense; a novel which follows an American couple, Eileen and Ed Leary from childhood, through courtship and marriage to the establishment of their own family. It’s very much a rags to riches, boy meets girl, American dream story and the plot arc is incredibly familiar until around half way through the book. In his early fifties, Ed’s behaviour starts to become increasingly erratic. Eileen is concerned about her husband and eventually convinces him to see a doctor. “If nothing’s wrong with him,” she tells her own doctor, “I’m going to divorce him. I can’t take it anymore.”

Eventually Ed is diagnosed with early onset Alzheimer’s. The news turns the Leary’s world upside down, but Eileen insists from the outset, “we are going to carry this with dignity and grace.” This is a novel about a family who stick together through good times and desperately difficult times. It’s also a novel about how a life change as radical and disruptive as a Dementia diagnosis can turn cosy notions of the American dream upside down. Eileen manages to get her husband included in a clinical drug trial and even fantasises that the drugs he’s given might return him to his old, ‘normal’ self. However, in reality, she knows it doesn’t work like this with Dementia,

“His real self wasn’t hiding in there waiting to be sprung for a day of freedom. This was his real self now.”

We Are Not Ourselves excels beyond other Dementia narratives in its handling of the specifics associated with an early onset diagnosis. Thomas explores family dynamics: Ed’s reluctance to tell his son, Connell about his illness and his fear that the condition might be hereditary. He takes a close look at the Leary’s marriage, as the role of provider quickly shifts. There’s also an incredible amount of realistic detail around the financial support available for people living with Dementia in the USA. At one point Eileen is encouraged to divorce her own husband as this would classify as eligible for financial assistance. The novel also refuses to shy away from the upsetting, and very realistic depiction, of a youngish man with Dementia attempting to retain his job, his status, salary and dignity for as long as he can, whilst the illness makes this more and more difficult to do. Thomas works in issues around class, finances and societal shame, raising big questions about where, if anywhere, Dementia fits into American society with its notions of personal and familial success.

There’s a section towards the end of this novel where Connell, as a young man, steps up to become one of his father’s carers and it remains the most straightforward but powerful piece of writing about Dementia I’ve ever read. This section stayed with me long after I’d finished the novel and still comes to mind from time to time. Thomas writes so well about the complex shift in relationship between parent and child as responsibility for physical and emotional support moves from the father to the son. There’s no excess of emotion or sentiment here, just beautiful, honest, matter-of-fact writing about how difficult it is to feed and change your own adult father, and also what a strange privilege this is.

At almost 600 pages, We Are Not Ourselves is a reasonably long read, but it’s the sort of novel which draws you in. Thomas introduces his readers to the Learys slowly, ushering us into their home, their family and, ultimately, their problems so that, by the final few chapters, we feel part of the family, fully able to empathise with their joys and their pains.

We Are Not Ourselves was published by Fourth Estate in 2015