Tag: Woman

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“May” by Naomi Kruger

Naomi Kruger’s beautifully written debut novel May is a story about how we remember the past, what we choose to hold on to and what must be let go. It centres around May, an elderly women living with dementia in a residential care facility. The novel is structured around a single day in May’s life. May’s own voice is the leitmotif running throughout the novel. After each chapter we hear fragmented snippets of her thoughts which allow us an insight into the confusion and cacophony of different memories and ideas all competing for May’s attention.

The chapters of the novel are narrated by a handful of different people who’ve had an impact on May. We hear from her daughter, Karen, her grandson, Alex, May’s husband, Arthur and Sana, the young female carer who’s grown close to her in the nursing home. Each of them gives us a little more understanding of May’s story and helps us piece together both who she was and who she now is. Kruger also slowly reveals a decades old mystery which May has become more and more obsessed with since her move into the nursing home. The multiple narrative voices work well here. They’re each strong and developed enough to feel like complete stories in their own right. Though they patch together May’s personal story, they also show how each of the characters has been influenced and impacted by their relationship with her. I particularly appreciated this. Often in dementia narratives, it falls to secondary characters to shape and establish the character living with dementia. Here the secondary characters have been just as impacted by encountering May as she is shaped by their testimonies.

May is an exquisitely written novel. The prose is clean but warm. It doesn’t sentimentalize the family’s relationship with May or approach her illness too emotionally. However, the fondness is apparent, particularly in her grandson’s and Sana’s narratives. I loved the humour Kruger brought to the scenes which showcase interactions with the residents of the nursing home. May is also notable for its exploration of the fractured thought processes of someone living with advanced dementia. We are given multiple opportunities to see how May’s thoughts have become confused and distorted. Kruger does a stellar job in translating this confusion into words. 

May was published by Seren Books in 2018 

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“The Boiling Point for Jam” by Lynda Tavakoli

The Boiling Point for Jam is Northern Ireland-based poet, Lynda Tavakoli’s debut collection. It covers a wide range of themes including war, personal loss, ageing, the natural world and Tavakoli’s connection to both Fermanagh and Tehran. The poems are both assured and characterised by a lightness of touch which often had me re-reading lines a second and third time as an image or metaphor slowly impacted with devastating effect.

The collection begins with a handful of poems which explore both her mother’s experience of dementia and her memories of her parents. The second poem in the collection, “Dead Dog” shows her mother distinctly unimpressed by a stuffed dog which has been brought in to the residential care unit to amuse the residents living with dementia, 

‘That’s a dead dog,’ you say,

The words raged from that part of you

Still holding and holding on.

It’s shot through with dark humour and Tavakoli’s signature unswerving gaze. Small, deft touches such as the repetition of the line, how you love my coat/and how you love my coat, reveal her ability to not only capture snapshots of her mother’s life with dementia, but also place those moments under an analytical poet’s gaze. There’s both beauty and profundity to be found next to the deep sadness inherent within these poems. Lines like,

this posse of souls,

eyes-eternity filled already,

struck be as both deeply upsetting and also incredibly poignant. Tavakoli tackles her subject with a great deal of respect and a sense of shared humanity. The poems which deal explicitly with her mother’s dementia are interspersed and set beside poems exploring her memories of both her parents, so the reader gets a real sense of the fondness which exists between the poet and her mother and the deep connection they have. When, in “Is This What I Do” she writes,

I say your name, see the reluctant

wakening of your eyes, the disappointment

you had not slept your way to heaven.

You have told me this before.

there is no judgment of her mother’s despair, no sense that they are meeting as anything but equals. It is the way Tavakoli records her mother as suffering, but not diminished as a person, which really struck me as I read these poems. I found them incredibly moving and would gladly have read quite a few more. 

The Boiling Point for Jam was published by Arlen House in 2020 

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“Surviving Grace” by Trish Vradenburg

The Washington Star review printed on the back of my copy of Surviving Grace calls this play, “a two-hour Seinfeld,” and this assessment seems particularly apt. The play is sharp, funny, fast-paced and in places a little absurd. It centres around Kate Griswald, a thirty something TV producer and her sixty five year old mother Grace. Kate’s life is hectic. She’s too busy for relationships. Her main focus in life is her career. She’s so busy juggling responsibilities at work she actually missed the birthday party where her mother’s confusion begins to become apparent to the rest of the family.

Grace’s Alzheimer’s diagnosis interrupts Kate’s hectic career. Suddenly, she not only has to worry about placating the actors in her sitcom, she also has to look out for her mother and her father who’s struggling to deal with his wife’s decline. The initial sections of the play address several key issues couples have to face when one develops Dementia. Jack, (Kate’s father), expresses his sadness about his wife’s condition.

“She can’t hold on to a thought anymore. Her mind is a sieve. It kills me to see her like this.”

He complains about the way their old friends now avoid them because they’re either afraid of Grace’s Alzheimer’s or don’t know what to say.

“Alzheimer’s is hurting out social life. You know what Mom said. Only family hangs in there.”

He even acknowledges the way the American healthcare system can wreck havoc on a couple’s finances and savings if one of them develops an illness like Dementia.

“The house is the only thing the government won’t take from you to pay for this. No Medicaid until I’m broke. I checked. Fifty-five thousand a year this costs.”

Eventually Jack can’t take the responsibility of looking after his wife. Grace is moved to a nursing home and Jack finds himself a younger girlfriend. He chooses fun and excitement over responsibility and leaves Kate to pick up the pieces. The play moves away from the traditional Dementia narrative about half way through. Grace is placed on a programme of experimental, (and completely fictional), new drugs which reverse the symptoms of her Alzheimer’s. She begins to recover her language skills and her memories. She shocks her family by informing them that she’s been cognisant and listening to everything they’ve said over the last few months. She wants to use the time she’s be given to travel and enjoy herself. Having gained a taste for the world beyond her nursing home, Grace refuses to return from her travels and without the Alzheimer’s-blocking drug regime, begins to decline for a second time.

Surviving Grace is a funny, intriguing, irreverent look at a family dealing with a Dementia-diagnosis in a truly unique way. Not every theme is developed fully and I’m still not entirely certain what Vradenburg hoped to achieve with the inclusion of a miracle cure. Yet, it raises lots of questions about consent and responsibility. It made me laugh in several places and offers an interesting alternative to the usual nursing home experience. It even includes a bit of romance.

Surviving Grace was published by Broadway Play Publishing Inc. in 2003. 

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“Turn of Mind” by Alice LaPlante

Turn of Mind was the first novel to win the Wellcome Book Prize, back in 2011. It was also one of the first of a number of novels and stories which used the conceit of Dementia as a vehicle for investigating a murder within a crime fiction context. As such, it’s a really interesting example of Dementia being explored in fiction. The plot is reasonably simple. Dr Jennifer White, a once highly gifted surgeon, has been diagnosed with Alzheimer’s. She finds her friend Amanda stabbed to death and is horrified to discover four of her fingers have been so expertly removed they could easily be, (no pun intended), her own handiwork. Jennifer can’t remember killing her friend, but she can’t be sure she didn’t do it either and suspicion naturally falls upon her. She doesn’t entirely understand the situation and therefore doesn’t know how to react appropriately.

“My guess is that a smile would be inappropriate. Fear might not be.”

I’ll not give away any spoilers because this is an exceptionally well-written, twisty and addictive crime fiction read. You’ll want to enjoy it for yourself without knowing how the story turns out. What I will say is that LaPlante is utterly convincing writing in Jennifer’s voice. The novel gives us such a great insight into what it’s like for a person to be so confused, she no longer even knows what she’s capable of. Jennifer is driven by the desire to piece the events together and find out what’s actually happened. She begins to keep a notebook of facts and this becomes a narrative device effectively employed by LaPlante to fill in the gaps in Jennifer’s memory, keeping the reader clear about the chain of events and timings. We are also given snippets of conversations between Jennifer and her children, and live-in caregiver Magdalena, though increasingly Jennifer is unclear who these people are, and the reader is also unsure which of them are to be trusted. Jennifer suspects everyone, even herself and as we’re following the story from her perspective, we are also encouraged to be distrustful too. Jennifer’s narrative slips in and out of different time periods; memories mixing with facts and perceptions so it’s almost impossible to know what is true.

I really enjoyed this novel. I couldn’t put it down. It’s one of the few examples of Dementia fiction where I found the plot utterly compelling and just as interesting as the characterisation. The Dementia aspect of Turn of Mindcould easily have been reduced down to a simple conceit, nothing more than a clever device for writing crime fiction. However, LaPlante has clearly done her research and both the voice and characterisation of Jennifer is utterly believable. This is a very realistically drawn character living with Dementia who is also caught up in an intriguing story. It’s easy to see why the novel impressed the Wellcome Prize judges.

Turn of Mind was published by Vintage in 2011 

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“The Granny Project” by Anne Fine

The Granny Project is a short YA novel written by Carnegie Medal winning writer Anne Fine and first published in 1983. It later found a place on the school curriculum and was adapted into a popular play. It opens with the mother and father of the family announcing the intention to put the children’s beloved grandmother into a nursing home.

“Are you two thinking of putting Granny into a home?”

“Thinking is finished,” Natasha told him. “It is decided.”

The four children -Ivan, Sophie, Tanya and Nicholas- subsequently hatch a cunning plan, (the Granny Project of the title). They will gather data which paints their parents attempts at caring for Granny, who is living with Dementia, in a very negative light. If Henry and Natasha don’t back down and allow Granny to stay in the house, they will hand this report in as a Social Sciences project, mortifying their parents. It’s an effective means of blackmail and eventually Henry and Natasha agree that Granny can stay. 

However, they do not fill their children in on the conditions associated with their acquiescence until the Granny Project has been destroyed. As soon as the written evidence is burnt, they inform the children that they are now solely responsible for their grandmother’s care. The children soon learn exactly how much work goes into caring for an elderly person living with Dementia, though I have to say, they -especially Ivan- make a valiant effort at giving the old lady the respect and attention she deserves. Just at the point when the situation is once again becoming intolerable, Granny sadly develops pneumonia and passes away. Towards the end of the novel, the older children reflect on the two forms of care their granny experienced at the end of her life. 

“Ivan, if Granny hadn’t died, and we could start again, would you still vote for keeping her at home?”

“Yes,” Ivan said.

“Just the same?”

“No, not just the same. Not with the system where they did all the work, and hated it. Or with the one where I did.”

It’s these insights into caring from the child’s perspective which make The Granny Project such an interesting read. In taking on the full burden of their grandmother’s care, the children come to understand how much pressure their parents have been under, yet also develop an even closer bond with the old lady and feel more inclined to ensure she stays at home. There’s not a huge amount of fresh insight into what it’s like to live with Dementia here; Granny’s condition isn’t even given an official name. The emphasis is more on the carers perspective and particularly how children will react to seeing someone they love begin to become confused. 

This is an often times hilarious, sharply written analysis of what it takes to holistically care for a loved one at home. It explores the complexities of family dynamics, what it feels like to be a child carer, (including the practical sacrifices and lifestyle changes Ivan is forced to make) and also how children process grief and loss. At times it feels a little dated, the cultural references are firmly rooted in the eighties and some of the attitudes feel a little out of whack with contemporary thinking but it’s still well worth reading today. 

The Granny Project was published by Methuen Children’s Books in 1983 

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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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“Memory” by Margaret Mahy

I’m going to be really honest. It took me longer than usual to get into Carnegie Medal winning writer, Margaret Mahy’s Memory. The novel opens with a quite lengthy, and somewhat confusing section which introduces us to the main protagonist, Jonny Dart. He’s drunk and angry and trying to get to the bottom of an incident which happened many years previously. He wants to track down a girl named Bonnie. It took me quite a few chapters to work out why and, even then, I wasn’t really interested in the backstory about his sister’s tragic and untimely death. Memory really began for me, the moment Jonny stumbled across an elderly lady, pushing a shopping trolley across a car park in the middle of the night.

In some ways Sophie, is the archetypal crazy old lady I frequently encounter in novels. She has Dementia. She lives alone. She dresses oddly and doesn’t eat properly and has let her house fall into disrepair. She owns many, many cats. She is, like every other crazy old lady, firmly stuck in the past. What saves Sophie from becoming a stereotype is the way Mahy gives her quirks and foibles peculiar to her. There’s also a level of gritty honesty here which I’ve rarely encountered in those YA books which tackle the subject of Dementia. Through a series of slightly contrived events, Jonny moves in with Sophie and becomes -if only temporarily- her live-in carer. Mahy gives the reader an unflinching picture of what it means for a young man in his early twenties to care for an elderly stranger, especially one of the opposite sex.

She describes Jonny’s concern over the state of Sophie’s house with a wonderfully accurate matter-of-fact tone. Similarly, Jonny despairs of her eating habits but when she gets distressed offers her a packet of biscuits and tells her to comfort eat the lot. There’s also no squeamishness when it comes to describing the more personal aspects of Sophie’s care such as dealing with her incontinence and helping her to bath. So many of these ‘young person befriends a quirky senior’ narratives shy away from tackling the physical aspect of caring. I’m grateful that Mahy included these vignettes and also offers her readers a kind of manual for how two people can negotiate around each other’s vulnerabilities to find a means of caring for each other. There’s a lot of dignity at work in this book. 

By the time I’d finished Memory, I was captivated by the relationship between Sophie and Jonny Dart. I loved their humour and their warmth. I loved the way the story is grounded in the New Zealand where Mahy grew up. I could’ve done without the flashback episodes or the snippets of lyrics from pop songs which made the book feel a little dated in places when actually the central relationship reads as incredibly contemporary and really fresh.

Memory was published by Harper Collins in 2002 

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“Tamar” by Mal Peet

Guardian Prize- winning author, Mal Peet won the Carnegie Medal for Tamar and it’s pretty easy to see why. His YA novel is an epic read, spanning fifty years of history and three generations of a complicated family. It’s a big book but I read it in less than twenty four hours because I simply couldn’t put it down. If you like historical sagas with plenty of action, you’ll absolutely love this book. It focuses on Tamar, a young fifteen year old woman who, after her grandfather’s suicide, attempts to unravel his complex past. Peet then uses flashbacks to 1944 to reveal Tamar’s grandfather’s side of the story and introduce the people and events which shaped his life. 

It transpires that Tamar’s grandfather was an undercover agent for the allies, operating in the Dutch resistance during the latter part of World War 2. As Tamar discovers more and more about his past, she begins to suspect that he wasn’t the man he purported to be. In normal circumstances she might have asked questions of her grandmother, the women who’d escaped from the Netherlands with her grandfather in 1945. The two of them had spent the remainder of their lives in England, yet never quite managed to shake off the past. However, Tamar’s grandmother has developed Dementia and can’t offer her granddaughter any help in unravelling the fifty year old mystery of who her grandfather really was.

I’ll be very honest. There are only a few chapters of Tamar which deal explicitly with the grandmother’s Dementia. It’s mostly a kind of historical fiction thriller with a tiny bit of romance thrown in for good measure. It’s a brilliant story, exceptionally well-written and I’m grateful that the inclusion of a Dementia narrative made me pick it up and read it through. The sections which focus on Dementia might be slim but they’re very well-crafted and capture a couple of aspects of the illness I haven’t seen explored in many novels so far. Marijke (the grandmother), is a Dutch speaker who learns English late in life, “her English had never been perfect like Grandad’s. She’d often search for the word for something, clicking her fingers impatiently, then give up and use the Dutch.” As her Dementia develops Marijke loses her English and defaults back to her native Dutch. No one in the care home she lives in understands her. They do, “what English people do when they speak to foreigners: talk slowly and loudly in English, and mime.” 

I’ve not seen this concept of defaulting to a primary language included in any Dementia narrative I’ve read so far, though I’ve witnessed it a few times in community arts practice when working with people living with Dementia who’d spoken Irish or another language before they learnt English. I also noted with interest Marijke’s attempts to hide food from her carers; a throwback to her youth, when she’d hidden food from the Nazi’s who’s overran their neighbourhood. This is another practice I’ve witnessed amidst people living with Dementia.

Peet’s description of Marijke’s Dementia is uncannily accurate and well-observed. The loving and gentle descriptions of how Tamar’s grandfather enters into his wife’s confusion as a means of reassuring her, are worth the read alone. This is why I’m including Tamar in my collection of Dementia narratives. There are only a few chapters featuring the older version of Marijke but they’re substantial enough to make this novel an essential inclusion, not to mention, a fantastic read.

Tamar was published by Walker Books in 2005 

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“Toffee” by Sarah Crossan

In this stunning verse novel from Carnegie Medal winning YA author Sarah Crossan we meet Alison, a young woman on the run from a difficult situation at home. She ends up in a bleak seaside town. Alone, and with nowhere else to sleep, she hides out in the shed of an abandoned house. It soon transpires the house isn’t empty. An elderly woman named Marla lives there. Dementia has left Marla confused and mistaking Alison for an old friend called Toffee. She invites the young woman to move in with her. At first Alison is quite blatantly taking advantage of Marla but soon she begins to care for her. What transpires is a strange but intriguing friendship where the women become increasingly dependent on each other for company and companionship. The novel is perhaps, best summed up by the short four sentence description on the back cover.

“I am not who I say I am. Marla isn’t who she thinks she is. I am a girl trying to forget. Marla is a women trying to remember.”

Despite their differences Marla and Alison have much in common. They manage to become a kind of support network for each other as Marla tries to make sense of her past and the fractured network of her memories while Alison attempts to brave the future and the big changes she’s going to have to make.

Essentially this is Alison’s story. It’s told in the first person from her perspective but includes descriptions and analysis of Marla, snippets of her dialogue and even secondary sources like text messages. Through Alison’s eyes we are given a wonderful picture of an older woman, living alone with Dementia who is anxious to maintain her independence and determined to continue being fully herself. Marla is not the usual dottery old lady, depicted in much of Dementia fiction. She is feisty, funny and desperately quirky; as annoying as she is likable. In Marla, Crossan has created a unique and incredibly appealing character. She’s made it ok to find aspects of Dementia truly hilarious.

“I can’t get my feckin’ tights on, Marla shouts

from the bedroom next to mine.

My arse has expanded.”

Perhaps the most unique feature of the novel is its style. Crossan has written the entire story in verse. It reads like a novel, though looks like a poetry collection on the page. All the white space around the words serve as a constant reminder of the fact that because of Dementia there is often as much said, or implied in the silences, as there is when Marla speaks. This sense of erasure and retaining what’s essential about who a person is and was, is mirrored in Alison’s story and eluded to in Crossan’s beautiful words.

“No goodbye is forever

unless you can

erase everything you ever knew about a person

and everything you once felt.”

Toffee is a truly beautiful novel. It’s fractured language and lyrical, mesmerising tone is perfect for exploring the theme of Dementia. As I read, I felt Crossan was trying to pin down something fleeting and elusive with her sentences. She does an amazing job of capturing what it’s like for a teenager to do life with someone who’s living with Dementia. I’d recommend this as an essential read for young adults and actual adults alike.

Toffee was published by Bloomsbury in 2019

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“Malcolm Orange Disappears” by Jan Carson

Summarising a book you’ve written yourself is a difficult and quite disconcerting thing to do. Malcolm Orange Disappears was my first published novel and, whilst I’m still quite fond of it and certain characters who appear within its pages, six books later, I can definitely see where it could be improved. The story focuses upon eleven year old Malcolm Orange, whose father has abandoned the family in Portland, Oregon. As he attempts to process this troubling situation Malcolm begins to notice he is, quite literally, disappearing. Malcolm’s mother has found a job as an orderly in a retirement village which comes with accommodation. As Malcolm settles into his new home he begins to befriend the elderly residents and together they go on a quest to stop him from disappearing.

Malcolm Orange is a magical realist text which uses metaphor and allegory to explore the various ways the older people in the retirement village feel as if they too are beginning to disappear. The loss of memory is explored at length. Many of the residents are living with Dementia and can’t remember important parts of their own stories. Malcolm and his friend Soren James Blue help the residents to form a kind of support group in order to capture one aspect of their history before it disappears.

“The People’s Committee for Remembering Songs existed solely for the purpose of remembering songs.” It meets several times a week and allows the residents to collectively recall the important songs which have shaped their identities. This section of the novel takes an imaginative look at how community and creative group exercises can, at best, help to slow the advance of Dementia and also help participants to find a sense of support and solidarity in being with others who are going through a similar experience. There is a particularly poignant scene towards the end of the novel where the residents all sing together in unison and experience a kind of miraculous release which doesn’t remove them from the realities of the illness but allows them to feel free and powerful as autonomous individuals. Much of this section was inspired by my own experience of volunteering with an Alzheimer’s Society, Singing for the Brain group.

“Emboldened by the miracles unfolding in every corner of the Treatment Room, the People’s Committee for Remembering Songs whooped and hollered, raising their wrinkled chins and hands in anticipation of further healing. The noise was deafening.”

As mentioned above Malcolm Orange is far from a perfect novel but it does give some interesting insight into how ageing, and in particular Dementia, is viewed from a child’s perspective. It explores the use of Dementia as a literary device for introducing fantastical elements into a story and also touches upon issues of sexuality, disability and autonomy in regards to those living with Dementia within a residential care environment. I hope it also advocates for the power of story in attesting to who a person living with Dementia once was and continues to be. 

Malcolm Orange Disappears was published by Liberties Press in 2014