Tag: Residential Care Facility

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Book Reviews

“Small Mercies” by Bridget Krone

This beautiful novel aimed at upper primary children was an absolute joy to read. It’s set in post-apartheid Pietermaritzburg, South Africa and deftly explores a number of complex themes including Apartheid, the care system, class and ethnicity issues and ageing. The theme of Dementia could quite easily have been lost within the scope of the novel. However, Krone does such an excellent job of weaving her story together Dementia never feels like a tokenistic add on. It’s an integral part of the narrative throughout. The illness is written in such a way that young readers will encounter a very realistic, factually accurate depiction of Dementia without feeling threatened or fearful. This is a delicate balance to maintain in children’s and YA Dementia narratives and it’s testament to the skill of Krone’s storytelling that she maintains this balance throughout the novel.

Small Mercies centres around a young girl called Mercy who lives with her two eccentric, elderly foster aunts and their lodger in a ramshackle house on the edge of the town. Mercy is struggling to understand her family situation, the poverty she’s living with and the complex ethnic identity structures of South Africa as played out in her own classroom. She’s constantly worried that a Social Worker might appear and take her away from her beloved aunts. This anxiety intensifies when she realises they may lose their house and that her Aunt Flora’s increasing confusion is actually a symptom of Alzheimer’s disease. Eventually neither Mercy nor her Aunt Mary are able to cope with Flora’s confusion, accidents and wanderings. They find a place for her in a residential care facility and Flora must come to terms with losing yet another parent figure. 

Krone does a marvellous job of articulating Mercy’s complicated mix of emotions as she watches her foster family go through some radical and upsetting changes. I particularly loved the honesty with which Mercy describes her embarrassment over how Aunt Flora’s “strange” behaviour might appear to the other children in her school. Krone also writes extremely accurately about the way poverty can take an enormous toll on how a person living with Dementia is cared for. This little novel has a lot of heart. It speaks about the importance of community when it comes to care. It’s funny and wise and full of hope and there’s a brilliant, compelling story running throughout. I enjoyed it immensely and learned quite a bit about South African culture whilst reading it. 

Small Mercies was published by Walker Books in 2020

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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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“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

“The ACB With Honora Lee” by Kate De Goldi

with illustrations by Gregory O’Brien

I absolutely adored The ACB with Honora Lee. It grabbed me the moment I opened it. I’m always on the look out for books which help children and young adults to understand what it’s like living with Dementia and I could instantly see how this book would appeal to mid-Primary aged children and help them process some difficult issues. Gregory O’Brien’s gorgeous illustrations explode across the inside cover and continue throughout, bringing main character, Perry’s thoughts to life in what look to be a series of colourful mind maps. I particularly enjoyed the way the story and illustrations bring different perspectives to the forefront and yet also compliment each other superbly in this short novel.

Perry is an only child with a very inquisitive outlook. Her favourite word seems to be why. She’s trying to figure out the world around her by constantly bombarding the adults in her life with questions. Sometimes she gets the answers she’s after. Often, she feels as if she’s being fobbed off. Perry has a wonderful relationship with her gran, Honora. She’s been Perry’s go to person but now she lives in a retirement home called Santa Lucia. Perry still visits regularly, accompanied by her parents or more frequently, her childminder Nina and Nina’s son Claude. They not only spend time with Honora but form a kind of community with the other residents.

Within a few chapters it is clear that Perry’s gran isn’t the same as she used to be. Gran is confused and sometimes doesn’t even recognise Perry. Perry finds this a bit distressing but instead of abandoning her trips to Santa Lucia, she tries to find a new way for them to connect. She begins to work with her gran on a school project, compiling a quirky and sometimes confused ABC of the older woman’s life. Through the ACB (as Honora calls it), and time spent together, Perry comes to understand a little more of the illness her gran is living with and finds new ways to bond with her as she now is.

The strength of The ACB with Honora Lee is to be found in the way Kate De Gold allows us to see Dementia through the eyes of a young child. Perry describes and explains things in her own childlike way and I found the tone she takes incredibly reassuring.

“So far, all Perry knew about Gran was her name – Honora Lee- and her age – seventy-six years old – and that she didn’t have a husband or much memory any more, which was why she lived at Santa Lucia and could never get Perry’s father’s name right.”

The book is an excellent resource for children who are learning how to live with a loved one who has Dementia. The tone is upbeat, fun and full of little quirks and yet the book doesn’t shy away from some of the harsher realities of living with Dementia. There are plenty of opportunities presented by the story for talking about the sad and difficult changes Dementia can bring about. However, the message comes across loud and clear in both the written text and the illustrations. A special friend or loved one living with Dementia is still the same special friend or loved one. There are ways in which to continue enjoying your time with them and, if you’re anything like Perry, you might even learn something in the process.

The ACB with Honora Lee was published by Hot Key Books in August 2015 

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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 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