Tag: Novels

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“Back to Blackbrick” by Sarah Moore Fitzgerald

Cosmo’s grandad is beginning to exhibit the early signs of Alzheimer’s. A team of social workers appear at the house he shares with his grandparents, hoping to test Grandad Kevin’s memory. If he doesn’t pass this memory test, Grandad will be dispatched to a nursing home. Cosmo is particularly close to his grandparents after his brother’s death and his mother’s subsequent move to Australia, leaves him living in their house. Desperate to help, he follows his grandad’s garbled instructions and uses an ancient key to let himself into Blackbrick Abbey. As soon as he steps through the gates, Cosmo is transported back in time. He meets his grandad as a young boy and gets caught up in a 70-year-old adventure, meeting the people who shaped his grandad’s life. As he plunges deeper and deeper into the strange world of Blackbrick, Cosmo continues to take extensive notes on the past, intending to use these notes to help Grandad Kevin pass his memory test. At the risk of giving away too many spoilers, I’ll leave my synopsis there.

Irish writer Sarah Moore Fitzgerald drew from her own experiences of her father’s dementia when crafting this beautiful snapshot of the relationship between a young man and his beloved grandad. The depiction of dementia is both accurate and shot through with moments of genuine humour and humanity. There are some genuine laugh out loud moments here and also a few scenes which moved me to tears. Grandad Kevin is far from being the stereotype often encountered in dementia narratives. And whilst the magical elements in the book bring a touch of whimsy and other worldliness to the story, at no point does Moore Fitzgerald shy away from confronting the harsher realities of watching a loved one journey with dementia. This, at heart, is a realist novel with a subtle element of the fantastical. 

Back to Blackbrick is full of wonderful, well-crafted and memorable characters and the plot kept me gripped from start to finish. I’d thoroughly recommend it for late primary and early high school readers who enjoy funny, adventure-filled novels. It also offers a great opportunity to introduce themes around dementia and begin important conversations on this subject with younger kids.

Back to Blackbrick was published by Orion Children’s Books in 2013 

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Scar Tissue by Michael Ignatieff

First published in the early 90s and concerned with late 80s America, Michael Ignatieff’s novel Scar Tissueexplores the dementia narrative at a point when much less was known about the illness. In fact the narrator, a 45 year old philosophy professor, does not use the term dementia when describing his mother’s condition. Her official prognosis is early onset senility, though the fact that he is able to describe previous generations of close relatives with similar symptoms would suggest some kind of dementia with a degree of genetic heredity. The specific diagnosis and terminology seems less important than the precise and insightful way Ignatieff goes about describing the unbreakable, and at times seemingly unhealthy bond, between a woman living with, then dying of, complications associated with dementia, and her devoted middle-aged son. Ignatieff’s fiction is so well-crafted and believable I continually had to remind myself that I was reading a work of fiction rather than a memoir.

The plot of Scar Tissue is a familiar one. A woman in her sixties begins to forget, then slowly loses her ability to look after herself. After her husband, and primary carer’s, sudden and unexpected death her sons make the difficult decision to sell the family farm and move her into residential care. It’s well-written but somewhat obvious terrain. However, there were two aspects of Scar Tissue which I found incredibly powerful and unique. Firstly, I appreciated reading an honest and powerfully written exploration of the relationship between a son and mother living with dementia. Whilst still living at home, the mother’s physical and emotional care falls almost entirely to the narrator and I found it quite refreshing to hear a man speak honestly and with tremendous kindness of how he bathes, dresses and feeds his mother, all the time ensuring her dignity remains intact.

The second thing which makes Scar Tissue a unique dementia narrative -especially amongst other similar carer-centric narratives- is the way the mother’s illness and eventual deaths completely upends the narrator’s life. Faced with the possibility of losing his connection with his mother he places every other aspect of his life -career, marriage, family- on hold and becomes almost obsessed with visiting her and caring for her. His marriage falls apart. He loses all sense of satisfaction in his job. Eventually his mental health deteriorates to a point where he no longer sees the point in life. It’s not an easy read, but Scar Tissue is one of the few fictional accounts I’ve come across where loss and grief associated with the dementia experience is explored in a really comprehensive way. As such, I found it a bleak but nonetheless important read. 

Scar Tissue was published by Chatto & Windus in 1993 

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“Erasure” by Percival Everett

I’m just going to begin by laying my cards on the table. Erasure is an absolutely brilliant novel; one of the most interesting books I’ve read this year. It was recommended to me by the novelist Keith Ridgway when I asked for suggestions of novels which explored diversity in dementia narratives. The dementia aspect of the novel is quite slight but still incredibly interesting. It also provides the catalyst for much of the action in the novel. I was particularly drawn to the hybrid form of Erasure. It includes a novel within a novel, a lecture, various fragments and another intriguing plays on linear form. It doesn’t surprise me that this novel won the Hurston/Wright Legacy Award for Fiction in 2002. I’m looking forward to reading more work by Everett now.

The plot of Erasure is an intriguing one. Monk is a black American academic and writer of high brow novels which do nothing commercially. At times he seems to live in the shadow of his grandfather, father and siblings who, on the surface of things, all appear to have been more successful than he is. He also rages against the literary world and its stereotypes of black American culture. He’s particularly frustrated by the popularity of a recent novel which he believes exploits working class black culture, playing to the stereotypes. In rage he writes a short satirical novel in the same vein. He employs a pseudonym and is surprised, then slightly horrified when his ‘piss-take’ novel turns out to be a runaway success, eventually winning the National Book Awards despite his attempts to scupper it in his role as a judge. Morally, Monk wrestles with what he’s done but he also faces a more practical problem. His mother is living with dementia and requires full time residential care. Monk’s high brow books don’t make enough money to support him and his mother’s increasingly complex needs, while the novel he’s so ashamed of can keep them both in relative luxury. Erasure’s a very clever book. It calls into question stereotypes about race, class and the arts world. It’s also very funny in places and incredibly astutely observed.

As a dementia narrative it offers an intriguing picture of an older, black woman, struggling to hold on to her dignity. There’s a really powerful scene in the residential care facility when she no longer recognises her sons and a funny, but also poignant take on night time wandering where the old woman manages to row herself out to the middle of the lake. Erasure also gives a fantastic insight into healthcare provision in the USA. It does not shy away from exploring issues around financial support and class within the context of dementia. Erasure was a refreshing, irreverent and eye-opening look at race and class in modern America. Everett cleverly explores the way dementia intersects with both these issues and many more.

Erasure was published by Faber and Faber Limited in 2003 

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“An Unravelling” by Elske Rahill

Irish author, Elske Rahill’s second novel is an epic beast. It follows the lives of four generations of women in a large family, over a particularly turbulent period. Molly is the matriarch of the family. She’s in her eighties and very much focused upon helping her granddaughters, Cara and Freya bring up their young children. Molly is the wealthy widow of a famous Irish artist and as her life draws to a close she looks back on her childhood and early marriage and also becomes increasingly concerned with how she’ll provide for her granddaughters and great grandchildren after her death. Molly has a substantial estate and is closer to the younger generation than her own three daughters. When her health fails and Molly begins to develop dementia, issues concerning the will and financial provision threaten to tear the family apart.

Rahill is a beautiful writer. Her prose is rich and full of poetic imagery. An Unravelling is quite a long, slow read but I appreciated the way it took its time to get underneath the characters’ skin, bringing each of the women to life for the reader. Molly, in particular, is incredibly well-written. This is a character living with dementia who has both a past and a meaningful present. She is an essential part of her granddaughters’ lives, full of warmth and wit and humour. Rahill tracks her unravelling with great care. Molly’s language and meandering reminiscences perfectly convey both the dementia experience and an inherent respect for this dignified and forthright character.

I also appreciated the deep dive Rahill takes into the practicalities of dementia care. This is a novel which very much explores the unpleasant world of finances in regards to healthcare provision and inheritance. It’s something I’ve often heard talked about but rarely see reflected in dementia narratives. Molly’s own mental unravelling mirrors the unravelling of her family as they let issues surrounding finances pull them apart. An Unravelling is a book about women within a family unit; the bonds they form and how these bonds are placed under strain. It’s a wonderful, immersive read and another great addition to the canon of Irish dementia narratives. I would highly recommend.

An Unravelling was published by Head of Zeus in 2019 

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“The Last Days of Ptolemy Grey” by Walter Mosley

Ptolemy Grey is a true character. He’s ninety-one years old and lives alone in his cluttered apartment in Los Angeles. He’s done an enormous amount of living in his ninety one years. He’s witnessed incredibly violent acts of racism. He’s married twice and lost both his wives though his extended family is so large it’s hard to keep track of who everyone is. He’s accumulated a small fortune in gold coins and cash savings which he keeps hidden in his apartment because Ptolemy Grey does not trust banks. He’s repeatedly threatened by the female drug addict who lives across the parking lot. His grand-nephew Reggie’s just been killed in a drive by shooting. AND he has dementia. There’s so much going in Ptolemy Grey’s life, the dementia is almost an afterthought. Though it’s made his life increasingly difficult. With Reggie dead, he’s not sure who is going to look after him. He can’t remember who to trust. He’s holed up in his tiny apartment where the bathroom no longer works and there’s so much rubbish piled everywhere, he can’t even get to his bed to sleep.

Seventeen year old Robyn meets Ptolemy at Reggie’s funeral. She becomes a kind of surrogate daughter/granddaughter/niece to the old man. She moves into his apartment and very soon has both Ptolemy’s living situation and his life licked into shape. Robyn finds a doctor who’s willing to include Ptolemy in a fictional drug trial. A course of experimental injections takes away his dementia so he’s suddenly able to remember his past and present with vivid clarity. The doctor’s warned him that this recovery is temporary. It will ultimately hasten his death but Ptolemy’s willing to take these odds so he has enough time to settle his affairs and ensure Robyn will be looked after when he dies.

I thoroughly enjoyed The Last Days of Ptolemy Grey. After so many middleclass, white narratives, it was refreshing to read a dementia novel set within a working class, African American community. It offered me a welcome insight into how dementia and ageing is viewed within this community. The extended family is expected to take responsibility for Ptolemy. It’s striking that this is perhaps the first dementia narrative where residential or external care isn’t mentioned at all. The narrative strand involving the complete return of Ptolemy’s memory is completely unbelievable, (I don’t necessarily mean this as a critique). It’s a plot device which Mosley uses in order to allow Ptolemy a chance to bring some level of catharsis to his family and the people he cares about. It works and reads as credible. As do the more realist descriptions of Ptolemy’s life before he encounters the wonder drugs. I was struck by the early descriptions of the squalor and isolation Ptolemy is living in. It resonated with several of my own experiences of older people living alone beyond the point where they’re fit to look after themselves. 

This is both a great read and a captivating portrayal of the dementia experience. I fell in love with the character of Ptolemy Grey. I could easily have read another two hundred pages or more.

The Last Days of Ptolemy Grey was published by Riverhead Books in 2010 

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“The Story of Forgetting” by Stefan Merrill Block

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

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

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

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

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“This is Paradise” by Will Eaves

I am a massive Will Eaves fan. I love the way Eaves puts a sentence together. I love the kindness at the heart of his writing, the wit, the lyricality, the gentle humour. All my Will Eaves books are heavily underlined. They are full of sentences and thoughts I want to return to and unpick further. This is Paradise is no exception. Published in 2012 it’s a kind of family saga, following the Alldens who live in suburban Bath. We meet them first when their four children are still living at home. The children flutter round the edges of their parents’ oftentimes complex marriage offering the reader insight into their father, Don and their mother, Emily. The family is noisy and chaotic -easily recognisable- but not without its fair share of problems. Don has a philanderer’s eye. Emily, a tendency towards martyring herself.

The novel is a game in two halves. In the second half the four Allden children are grown up, though troubled Clive, is still struggling to sever the links with home. They return to be with their mother in her final days. Emily is dying in a residential care facility. She has dementia and no longer recognises any of her family members. As they spend a few days around her bedside and come together for the funeral service both the cracks and the bonds in the Allden family begin to make their presence known. It is a very familiar story: a family revealing both their best and worst sides when placed under pressure. Eaves captures each small snapshot of Emily’s death with grace and searing honesty.

There are only a few sections of this novel which specifically focus on dementia. However, those that do are particularly well-written and really begin to interrogate issues around residential care. Much is made of the pressure the care staff are under. They’re understaffed, under-supported and under-trained. And yet, Eaves takes great pains to repeatedly show us how kind and compassionate they are in their dealings with both Emily and her grieving family. His portrait of a British care facility with its smells, its sounds and its ever-changing roster of residents is so accurately written I could picture every detail of Emily’s experience. I also felt Eaves does a wonderful job of recording the nuanced reactions of each family member: they all respond differently to Emily’s illness and subsequent death. From her husband who infantilises her and finds a new girlfriend while she’s still alive, to her brother who continually tries to draw attention back to himself, to Clive whose grief is bottomless and Liz, who brings her own nursing experience to the table and is consequently quite pragmatic in the way she deals with her mother’s condition. These are believable portraits of real people reacting within the spectrum of their own emotional capability. As with all of Eaves’ writing, the characterisation is nuanced, realistic and beautifully developed. I could’ve read another 300 pages quite easily.

This is Paradise was published by Picador in 2012 

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“The Wilderness” by Samantha Harvey

I’m going to be honest from the get go, The Wilderness was one of the first fictional dementia narratives I read and it remains one of my favourites. This was my third re-read and Samantha Harvey’s precise and evocative prose actually improves with each subsequent read. There’s a lot going on in this novel. It centres around Jake. Jake has Alzheimer’s. Jake is piecing his life together to make a timeline for his memory doctor. As he tries to order the events of the last seventy odd years his ability to maintain the facades he’s built up begins to slip. Jake is a man who’s constructed his sense of self out of evasions and deceptions. As the novel progresses and his dementia develops he finds it harder and harder to recall the truth of who he is, what he’s done and how his life has played out. Jake’s sense of self gradually unravels as Harvey deftly paints a picture of an old man who is more easy to empathise with in his vulnerability and confusion than he has been at any other point in his life. 

A cast of women hover around the edges of Jake’s story. His wife, Helen. Joy, the woman he slept with in the early days of his marriage. Eleanor, who has always loved him and now finds herself Jake’s carer, at the end of his life, when he can no longer remember who she is. His mother, Sarah whose presence overshadows his entire existence, colouring his perception of everything. And his young daughter, Alice who died as a child yet reappears to him in adult form as the dementia begins to take hold. All their stories swirl around the novel, repeating, intertwining and fracturing. The reader is offered multiple perspectives and interpretations of the same events and incidents. It’s confusing and at times frustrating. It’s exactly as I imagine an experience of dementia might be and this is why I continually return to The Wilderness as an example of what a dementia narrative could and should be. It’s all consuming. It’s experiential. It drew me in and felt almost like a journey through an actual wilderness and yet it’s also shot through with moments of precise clarity, of incredible beauty and profound pathos. It is, in short, a marvellous book.

The Wilderness was published by Vintage in 2009 

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“About My Mother” by Tahar Ben Jelloun

Translated from the French by Ros Schwartz and Lulu Norman

Tahar is sitting at his mother’s bedside listening to her long-hidden secrets and stories unfold. Lalla Fatma has dementia. She is confused about where and when she’s living. As the novel plays out she frequently digresses back to her childhood in Fez in the 1940s. She’s no longer aware that she’s actually living in Tangier in 2000. In a series of snapshots from her past she talks about her three arranged marriages, her children, her extended family and the friendships she’s had across the years. These flashback scenes were my favourite parts of About My Mother. They are rich with detail and offer a real insight into Moroccan culture, illuminating practices and beliefs I’ve never come across before. In the first half of the novel these flashback sections provide a structure for the narrative, separating the past and the present into distinct chapters. As the novel progresses and Lalla Fatma’s condition becomes worse, time becomes a muddier concept. We flick between past and present at a dizzying speed and the narrative alternates between the impressions and memories of Lalla Fatma and her son.

The text is often disjointed and difficult to follow, mimicking the old woman’s confusion. There are painfully accurate descriptions of how the dementia has affected her temperament. She is particularly harsh towards her live-in carer, a close family friend, and struggles to abandon her independence as she becomes more and more dependent on others for her everyday care. There are also a number of very believable but nonetheless upsetting descriptions of how the aging process has negatively impacted Lalla Fatma’s physicality. Her memories of her own early sexual experiences and her young body contrast sharply with the descriptions of how age and infirmity have left her physical diminished, bedridden and incontinent. 

About My Mother is not an easy read. There are very few moments of levity in the text. It is an intense novel exploring both dementia and female identity within a patriarchal oppressive society. However, what shone through for me was the beautiful language and effortless descriptions of Moroccan culture which conjured up a striking picture of a country I’ve only once visited, but instantly loved. I also found the relationship between Tahar and his mother an incredibly moving one. There’s a deep and clear bond between the two which allows them to find points of connection throughout Lalla Fatma’s illness, right up until the moment of her death.

About My Mother was published by Telegram in 2016 

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“When the Music Stops” by Joe Heap

When the Music Stops is a perfectly pleasant if somewhat predictable wee novel. We meet Ella at seven different points in her life, from a childhood in working class Glasgow, through WW2 to the heyday of rock ‘n’ roll in 60s era London and a, (slightly baffling), late career move to nursing. Throughout her turbulent life three things about Ella remain constant: her love of music, particularly the guitar, her complicated love affair with Robert and the fact that people seem to die around her with worrying frequency. I’m not going to say too much about the premise of this novel. It’s not the kind of book I would usually read. I found it quite contrived and a little thin, but I can also see why readers might enjoy it as a piece of escapism. 

Each of the seven chapters from Ella’s life are framed by short sections from her final days as an elderly women. Ella is living with dementia. We know this because on several occasions she tells us she’s living with dementia. She is eighty seven years old and trapped on a boat lost at sea with her infant grandson. The incidents which led up to this scenario are never quite explained but an elderly woman with dementia, adrift at sea acts as a handy plot device through which the author draws all the various themes at play in Ella’s life together. One by one seven dead people join Ella on the boat offering her advice and practical assistance in helping her to get the baby to safety. It’s made quite clear that these people are all figments of her imagination and yet the reality is she is still able to hoist a main sail, lower lifeboats, find and fire flare guns and all sorts of things which I found completely implausible given the fact that great pains are taken to remind us just how much her memory and capability have been diminished.

I’ve raised the question of dementia as a plot device a number of times in these book reviews. I completely understand that the nature of fiction means that characters often exist primarily to serve the story’s plot. However, I do think that when it comes to using a character with dementia to advance a plot or create dramatic tension, the writer should endeavour to ensure the depiction is well-researched, fully-formed and accurate. I didn’t find the character of Ella as depicted in the “dementia” sections of this novel at all believable. She is confused, forgetful and frail when it suits the plot and at other times uncharacteristically competent. When the Music Stops is a light, fun read and as such is quite enjoyable but I don’t think it stands up as a dementia narrative.

When the Music Stops was published by Harper Collins in 2020