Month: December 2020

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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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Book Reviews

“By the Pricking of My Thumbs” by Agatha Christie

First published in 1968, Agatha Christie’s 59th crime fiction novel, By the Pricking of My Thumbs might not be the most obvious inclusion in my Dementia bookcase. However, though it never mentions the word Dementia, (the term did not come into widespread use until the 1980s), the novel, much of which is set in a retirement home, is one of the first examples I’ve come across where Dementia -or senility as Christie calls it- is used as a plot device in crime fiction. Recently, we’ve seen a number of crime fiction novels include characters with Dementia as a means of adding confusion, delaying the investigation or increasing the intrigue elements of their plots. I hope to take a closer look at this practice at a later date. Arguably, there is a less well-developed, though even earlier, incidence of this trope in Christie’s work. In her 45th crime fiction novel, A Pocketful of Rye, the story begins with an elderly man experiencing a complete change of personality which, in the 1985 television adaptation, starring the great Joan Hickson as Miss Marple, is quite believably attributed to Lewy Body Dementia.

In, By the Pricking of My Thumbs, Christie’s husband and wife sleuthing duo, Tommy and Tuppence investigate what might or might not be a murder after a confused elderly lady in a nursing home tells them there’s a child’s body buried behind the chimney. The plot hangs upon this confusion. Are old ladies with Dementia to be believed when they make accusations and claim there’s a poisoner at large? Or, are they to be brushed aside and dismissed as Miss Packard, the nursing home’s director seems to think?

“They’re like children, really,” said Miss Packard indulgently. “Only children are far more logical which makes it difficult sometimes with them. But these people are illogical, they want to be reassured by you telling them what they want to believe.”

The implication is reasonably clear. Older ladies living with Dementia no longer have any agency. Miss Packard goes on to call their delusions fancies, although she insists they’re harmless enough. “We try not to take any notice, not to encourage them. Just play it down,” she says. In this sense, Christie could be seen to be echoing the predominant feeling of her time. People who developed, what was then known, as senile dementia were best ‘played down’ or even ignored. They were regularly institutionalised and rarely given access to the kinds of therapies, activities and outlets for self-expression which people living with Dementia routinely engage in these days. And so, it is actually quite counter cultural when Christie reveals, (I’ll be careful here to avoid plot spoilers), that the so-called “illogical” and “delusional” old ladies are actually speaking a version of the truth and attempting to draw attention to a real crime which has occurred. 

Like many tropes within Christie’s writing I go backwards and forwards on the ethics of what she’s doing with her plot and themes. In one sense her inclusion of people living with Dementia as vital, active and -most importantly- helpful characters is well ahead of her time. In another sense, I have reservations about using Dementia as a plot device. Is it ethical to include a character with an illness like Dementia simply to develop an aspect of the narrative? Isn’t this quite a reductive way to view both the illness and the characters themselves? What does this say about how authors view people living with Dementia or other illnesses? There are far too many questions to answer here in a short review. By the Pricking of My Thumbs is late Agatha Christie and probably not one of her best. But it’s still a very enjoyable read and a great treat for me as a big Christie fan to see her engage with the topic of Dementia. It feels a little like my planets have aligned.

By the Pricking of My Thumbs was published by Collins in 1968

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Book Reviews

“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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Book Reviews

“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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Book Reviews

“Alzheimer’s and a Spoon” by Liz Breslin

Alzheimer’s and a Spoon – Liz Breslin

In New Zealand-based poet Liz Breslin’s first full collection she turns her attention to her own grandmother’s experience with Dementia. Her Polish babcia, Manuela was a devout Catholic, a soldier in the Warsaw uprising and an incredibly interesting women. In these 75 short poems Breslin documents her life, her experience of Alzheimer’s and her death. She includes several poems based on the research and case notes of Alois Alzheimer, the German psychiatrist and neuropathologist credited with first discovering the disease. 

Peppered with photographs illustrating parts of her grandmother’s story and intriguingly shaped word poems, the collection isn’t afraid to play with form. Snippets from recorded interviews with Breslin’s grandmother are woven into the poetry, whilst in other places, Alzheimer’s own notes are presented as found poems. As the poet skips from one form to the other, dipping in and out of found text, thoughts, narrative and impression she effectively conveys a feeling of confusion and disorientation; a most fitting evocation for a poetry collection concerned with exploring the experience of Dementia. There’s a sense here of language and narrative falling apart; “where are they off to, these words/ I am losing?” 

However, Breslin’s main focus is the gradual erosion of her grandmother’s memory. I was particularly impressed by the variety of metaphors and images she uses to express this gradual loss. In Eulogy at the Oxford Oratory, memory is powerfully and tenderly equated with a set of her grandmother’s rosary beads. 

“Warm with memory, some will

spill. Some I’ll keep in corners,

hidden glimmers. Much has been lost.”

Alzheimer’s and a Spoon is an honest, warm and occasionally funny look at what it’s like to watch a loved one forget their own past. It explores issues of culture, distance, language  and history through the lens of Dementia. There’s a big life and a lot of story tucked between the lines of Breslin’s short poems. When, at the beginning of dichotomy, she writes,

“Please pass me a scrumpled ball through the bars

secret me the memories you don’t speak

I hear the whispers of your stalwart war

but never from your tongue, never for real

it’s just stories, right?”

Breslin gives us a little insight into the mammoth task she’s set herself; telling the story of a woman who can no longer tell her own story.

Alzheimer’s and a Spoon was published by Otago University Press in 2017