Tag: Elderly

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“The Summer of Lily and Esme” by John Quinn

It’s the summer between Primary and Secondary School and everything’s changing for Alan. His parents have moved the family out of Dublin and bought an old house in a village in the country. At first Alan thinks he’ll be isolated and lonely with no one around to play with. However, within days of the move he’s stumbled upon the two old ladies who live in the cottage next door. Lily and Esme are twins. Although they’re extremely elderly now, they still believe themselves to be little girls and instantly mistake Alan for a young boy they used to play with, who died tragically on the day of their tenth birthday party. With the help of his new friend Lisa and a bunch of friendly locals, Alan works hard to piece together the mystery of what happened, the summer Albert died. There is talk of ghosts, a lot of laughter and a clandestine adventure to the local circus. Thanks to Alan’s efforts, Lily and Esme have the best summer of their lives and Alan himself learns a lot about friendship and the importance of community.

This is a gorgeous novel aimed at upper Primary school aged children. It never mentions the word Dementia though it’s clear from the outset that both the twins are living with the condition. They’re confused and frequently forgetful. They muddle their memories up with the present and are cared for by a stern live-in carer whom they’ve nicknamed Badger. Quinn does a fantastic job of capturing what their condition seems like to a young boy and, through Alan’s responses, painting a really compelling picture of what it looks like to befriend and accept a person living with Dementia and actually benefit from this relationship. A few of the references are a little dated. The Summer of Lily and Esme was clearly written in a pre-Internet age and yet this doesn’t stop it from being utterly charming and compelling. It’s a treat to read such a rich Dementia narrative set right here in Ireland. This is a very special book.

The Summer of Lily and Esme was published by Poolbeg Press in 1991 

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“The Madonnas of Leningrad” by Debra Dean

Debra Dean’s beautiful novel, The Madonnas of Leningrad is one of a handful of key texts we’ll be exploring as part of our research project. We’ll be sharing and discussing extracts from the novel during our forthcoming reading groups. The story shuttles between a wedding on an island in contemporary America and the autumn of 1941 where we first meet a much younger Marina, resident in Leningrad’s Hermitage Museum. As the city is under siege Marina struggles to survive in appalling conditions and yet while moving the museum’s masterpieces away for safekeeping, she finds solace in committing each image to memory. Many years later, during her granddaughter’s wedding, an older Marina experiences flashbacks of her old life in Russia and, as a result of the Alzheimer’s she’s living with, becomes increasingly confused about where, and indeed, when she is.

The Madonnas of Leningrad is an exquisitely written novel. It is worth reading alone for the beautifully drawn descriptions of the artwork Marina is so fond of. It also provides a gentle but accurate portrait of a family doing their best to nurture and accommodate their elderly parents as they deal with the implications of dementia. I found the scenes towards the novel’s close when Marina wanders from her hotel room particularly affective emotionally. Dean does a wonderful job of recording the fears and frustrations of the family as they try to track Marina down before it’s too late. Both her portraits of Marina’s husband and daughter are incredibly honest and accurate.

However, the thing I loved most about The Madonna’s of Leningrad was Dean’s ability to use the flashback device within her novel to effectively capture Marina’s confusion. As the story progresses and the reader is transported further and further into the backstory of Marina’s past, it becomes increasingly difficult to tell where the line between past and present lies. There were several moments when I had to stop and concentrate in order to locate Marina’s narrative. Was she describing a present scene, or something from many decades ago? I loved this natural sense of confusion. It helped me empathise with Marina’s experience. I felt like I was seeing and thinking through the lens of her muddled up memory. Past blurred with present. Fears and anxieties long left behind began to take on a fresh urgency. It was a very immersive reading experience. I thoroughly enjoyed this short novel and the way Dean expertly reveals the rich life Marina has lived by using fractured snippets of her memory.

The Madonnas of Leningrad was published by Fourth Estate in 2006 

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“There but for the” by Ali Smith

In true, and glorious, Ali Smith style, There but for the is a novel narrated from multiple perspectives, seamlessly weaving various timeframes, memories and characters together as their stories pivot around a central linked point. The pivotal point here is a dinner party gone dreadfully wrong. One of the guests, an almost stranger named Miles, excuses himself from the dinner table. He proceeds to lock himself in the spare bedroom and refuses to come out. Various characters are introduced into the story, helping to flesh out the life which has led Miles to this point. 

The point of the novel, as is often the case with Smith, is not stringing the reader along until they arrive at the big reveal moment when the whole locked room mystery will be revealed. Ali Smith is a much better writer than this. The point is that in getting to the point, or perhaps not even getting there, the reader relishes the journey and the opportunity to try on each character’s unique perspective and walk a chapter in their shoes. Thus, the plot device, though clever, always feels a little subsidiary to the incredibly well-crafted characters and the subtleties Smith weaves into each of their voices. This is a book about living and being and the way people’s lives crash into each other and how these crazy encounters are meant to be enjoyed not analysed. 

Around half-way into the narrative Smith introduces the reader to May Young, an older lady living with Dementia in a nursing home. May’s chapter is narrated in a close, and very intimate third, with much of the observation coming from what May calls, “the confines of her head.” It’s a very well-written exploration of how it must feel for someone living with Dementia during that strangely liminal period, when May is still aware enough to know something’s gone wrong with her mind, yet is already losing elements of her own autonomy. 

There’s a tremendous amount of physicality to Smith’s depiction of May. May is constantly narrating the movements and presence of her own body as if observing it at some distance. She is clearly struggling to situate her sense of self as attached to her own body when she thinks about the hospital band, digging into her wrist. 

“Well, but it was sore enough, that wrist on the bed, to be her own wrist, no stranger’s wrist after all, there where the plastic bit into it.”

Smith also explores the blurring of time within May’s head as she confuses a young visitor with one of her own children and talks about being overwhelmed by the memory of the three of them, frozen at particular points in their development.

“All three of her children ran about in May’s head in colour turned up too-high, on a throbbing green lawn bordered with throbbing yellow roses.”

May’s confusion extends to her own story. She’s trying to get the order of it straight in her head; to understand the implications and consequences of everything which has happened in her life. It isn’t easy. Dates slip and facts rearrange themselves. The story comes out back to front and in the wrong order. It’s a very believable account of Dementia. Ali Smith’s style of writing sits well with the fractured linguistic tics, the repetitions, questions and word associations which might be seen as typical of a person exhibiting the early stages of Dementia. May’s chapter exists as a microcosm of the themes running through There but for the. Yes, the reader wants to understand the story she’s telling. There’s a desire to pin down the narrative. But the true joy of May’s story is in the telling; in the getting to the point. Fractured, fumbled, shot through with humour and strange digressions, her elliptical narration gives the reader a wonderful insight into the workings of her brain and the sort of complex and wonderful person May Young is. 

There but for the was published by Penguin Books in 2012 

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

Translated from the Dutch by Paul Vincent

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

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

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

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

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

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

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

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

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

“Will a day come when no one

remembers the right mistakes, no one still

knows what speech impediment

exactly to feed?

Will anyone bore through your sandcastle

of semantics with

firebreaks and understanding?” 

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

Stammered Songbook was published by Pushkin Press in 2015

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“The Heart of Everything” by Henrietta McKervey

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

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

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

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

The Heart of Everything was published by Hachette in 2016

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“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 

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“The Waverley Gallery” by Kenneth Lonergan

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

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

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

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

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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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A Trilogy of Wonderful Grandpa-themed Picture Books

These three stunning picture books aimed at young readers provide ample opportunity to begin conversations with small children about how what it’s like to watch someone they love grow older. All three explore various forms of ageing, including forgetfulness and the loss of memory. Whilst they don’t explicitly mention Dementia, the implication is there, and the topic is covered in a range of really sensitive age-appropriate ways. The beautiful illustrations enhance the impact of these books and also offer different opportunities to ask questions and begin discussions with young readers, exploring their own experiences of ageing in a safe and enjoyable way.

Grandpa Green – Lane Smith

Grandpa Green is an amazing gardener. In this beautifully illustrated book, his great-grandson leads us around his garden which is populated by all sorts of amazing topiary sculptures: animals, people and even an enormous wedding cake. Grandpa Green is getting old and he sometimes struggles to remember all the amazing things that have happened to him. But it’s ok, because “the gardens remembers for him” and he has a fantastic great-grandson who likes nothing more than to tell Grandpa’s story using all his imaginatively-shaped plants.

Grandpa Green was published by Two Hoots in 2017

My Great Grandpa – Martin Waddell

With illustrations by Dom Mansell

Gran might say “it’s sad to be like Great Grandpa is now!” but his little great granddaughter knows it’s not. She takes her Great Grandpa out on a wonderful adventure around the village he lives in. Great Grandpa tells her all the history he can remember and when his memory runs out, she fills in the rest of the details. Together they make a fantastic team. She doesn’t feel at all sorry for her Great Grandpa though she can see he doesn’t have as much energy as he used to have and sometimes he seems a bit muddled. She’s sure, “Great Grandpa knows things that no one else knows. In his mind he goes places that no one else goes.”

My Great Grandpa was published by Walker Books in 1990

Granpa – John Burningham

A little girl and her grandfather share a very special relationship. Though Granpa’s not as strong as he used to be and sometimes he can’t go out to play, through gorgeous leading questions and beautifully illustrated pictures of the fantastical worlds he conjures up we can see his imagination’s still working well. Granpa might be exhibiting the signs of early Dementia or he might just be playing make believe with his little granddaughter. Burningham doesn’t feel the need to make this explicit and this decision serves the story well. Granpa is a subtle and very clever book which illustrates the way a child’s ability to enter into her grandfather’s confusion about reality could actually help her cope with his Dementia in a loving and imaginative way.

Granpa was published by Puffin Books in 1984