Tag: Alzheimers

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Book Reviews

“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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Book Reviews

“Aliceheimer’s; Alzheimer’s Through the Looking Glass” by Dana Walrath

Anthropologist, artist and writer Dana Walrath became a live-in carer for her mother Alice after her Alzheimer’s diagnosis became too much for her to manage alone. Moving her mother from her apartment in New York to the family home in rural Vermont, Walrath used the months they spent together to both record her mother’s dementia journey and forge connections which weren’t previously there. From the start, Walrath is honest about the fact that she is not particularly close to her mother and sees this period of dependency as an opportunity to bond before it is too late. I appreciated the honesty Walrath brought to the stories she tells about her mother and particularly their interactions and conversations. I also loved the humour in this book. It’s quite a gentle, upbeat account of dementia. Alice is placid and compliant throughout her illness. Walrath goes to great pains to show how her mother retained her humanity throughout her journey with dementia. I also really appreciated the way snippets of Alice’s history and the Armenian cultural tradition she belonged to is deftly woven into the narrative.

Aliceheimer’s is an unusual format. Each page contains both a small piece of observational writing and a beautiful artwork which illustrates the sentiment. The art is a mixture of collage and pencil drawing. Each scene depicting Alice is fashioned out of the cut-up pages of a copy of Lewis Carroll’s Alice’s Adventures in Wonderland. Thematically the Carroll text works marvellously as it allows Walrath to explore both the confusing and disorientating elements of her mother’s illness and the fantastical, imaginative scenarios which her dementia frequently pitches her into. I loved the use of collaged texts. It seemed the perfect medium for depicting Alice who, as a lifelong reader, was still enjoying the physical pleasure of holding a book and the comfort of being read to, long after her dementia had significantly impacted her ability to function normally in other areas of her life.

Aliceheimer’s is part of a fascinating series of publications which explore various medical issues through a combination of illustration and writing. The series is called Graphic Medicine and if the other publications are anywhere near as powerful as Aliceheimer’s I’d thoroughly recommend checking them out.

Aliceheimer’s was published by Penn State Press in 2016 

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Book Reviews

“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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Films

Away From Her

Canadian director, Sarah Polley’s Away From Her was one of my first encounters of a dementia narrative on the big screen. Polley wrote the screenplay based on Alice Munro’s beautiful short story, The Bear Came Over the Mountain and was determined from the outset to cast Julie Christie in the lead as Fiona, a smart, passionate woman who is enjoying her retirement until she’s diagnosed with Alzheimer’s. We follow Fiona and her husband Grant (Gordon Pinsent), along a familiar journey from slight confusion, to wandering, a diagnosis and memory test and finally the moment where Fiona herself decides it’s best if she moves into a residential care facility.

It’s refreshing to watch a film about dementia which focuses on a couple’s relationship. Away From Her is frank in the way it deals with issues around sex, intimacy and separation. We see Grant and Fiona making love for the final time on the day he moves her into the care facility. He’s heartbroken by the mandatory 30 day no contact policy. They haven’t been apart in more than forty years. By the time he returns to visit Fiona, she’s no longer clear about who he is and she’s developed a close attachment to another resident; a man called Aubrey (Michael Murphy), whom she’d been friendly with as a girl. Grant is now faced with a dreadful dilemma. His wife is only happy in the company of another man. Any attempts to separate them lead to deep depression on Fiona’s part. 

This is a stunningly acted and sensitive exploration of a really difficult issue which occasionally arises in dementia care. Polley gives us an insight into both perspectives, adding layers of nuance when she reveals that Grant is not entirely blameless. He’s been unfaithful to Fiona in the past. It’s also an incredibly accurate snapshot of what residential care can be like. Polley’s quick to point out the profound differences between the first floor, where the cognisant residents live, and the much-dreaded second floor where people are moved when their dementia develops. It’s a familiar and thought-provoking portrait of residential care, raising important questions about dignity, independence and quality of life. Away From Her is also a captivating story with fine performances from the central actors including the always fabulous Olympia Dukakis who’s a star turn as Aubrey’s wife.

Away From Her was directed by Sarah Polley and adapted from Alice Munro’s short story The Bear Came Over the Mountain. It was released in the UK in April 2007

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Book Reviews

“Ten Days” by Austin Duffy

Irish novelist, Austin Duffy’s second novel, Ten Days is mostly set in New York. Photographer, Wolf is visiting the city with his daughter Ruth so she can take part in her late mother’s family’s celebration of the ten High Holy Days of Rosh Hashanah and Yom Kippur. The visit will culminate in a ceremony to scatter Miriam’s ashes over the Hudson River. Miriam has recently passed away after a short battle with cancer. Though, at the time, separated from Wolf, she’d asked her husband to return to the family home so they could be together for the last few weeks. She’s also left him strict instructions concerning both her funeral arrangements and plans for Ruth to be part of the extended family’s holiday celebrations in New York. Wolf is neither Jewish nor in the family’s good books. They rightly judge him for his treatment of Miriam. He feels excluded from the celebrations and yet continues to persevere with his in-laws. It’s essential that his daughter is accepted and feels at home within the family.

Wolf has been diagnosed with Alzheimer’s. Though he doesn’t tell his wife or daughter, he’s made an elaborate plan to provide for Ruth when he can no longer look after her. He’s booked one way tickets from London for both of them. The novel implies that Wolf intends to kill himself in America, whilst he’s arranged for Ruth to move in with her Jewish in-laws in New York. I’ll not give any spoilers away but it’s enough to say his plan doesn’t work out quite as he’d intended. The novel ends a little differently from how I’d expected and ultimately I was grateful for this.

I loved Ten Days. I loved the writing. It’s sharp, well-crafted and pacey. It’s very much a city novel and there’s a definite urban tightness to the way it’s written. I loved the depictions of Jewish culture and the way they’re seamlessly woven through the book. I also loved the occasional dips into the world of artists and musicians -some real, some fabricated- which Wolf has built his career around.

Duffy’s penned a great depiction of strained relationships, put under further pressure by the increasing confusion Wolf’s experiencing. He’s not particularly close to his daughter. He’s been ostracised by his in-laws. And yet he’s trying his best to prepare for their future together, even as he begins to forget who they are. There’s a woozy quality to the way Duffy writes dementia. Both time and spatial awareness come in and out of focus, sometimes repeating in a loop. I found this a very effective mode of capturing the dementia experience of a man who’s desperately trying to hold on to his sense of reality. It’s also a novel which explores power and ego. Wolf is a man who’s been used to riding roughshod over others’ feelings; the central section of the novel, where he discovers his mother’s Alzheimer’s, then coldly and pragmatically dispatches her to a nursing home, is quite a hard read. Now, he’s increasingly dependent on other people, some of whom he’s treated poorly in the past. This wasn’t the dementia narrative I was expecting to read. I enjoyed it all the more for that.

Ten days was published by Granta in 2021 

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Book Reviews

“The Imposter” by Anna Wharton

I was lucky enough to get my hands on a pre-publication proof copy of Anna Wharton’s first novel, The Imposter which is due for release in early 2021. Anna has been a journalist, writer and ghost writer for many, many years and most notably worked alongside Wendy Mitchell on her bestselling memoir about her life with early onset Alzheimer’s, Somebody I Used to Know. It’s easy to see how the time spent working on this amazing non-fiction book impacted Wharton’s first novel. Dementia is a key theme running through The Imposter and the description of both the illness and Grace, who is living with Alzheimer’s are both incredibly accurate and deftly written.

I want to be careful not to give away too many spoilers when describing The Imposter. Suffice to say if you enjoy a well-written thriller with twists and turns and surprises along the way. You’re going to really enjoy this novel. The main protagonist Chloe is an almost reclusive young woman who works as an archivist in a local newspaper by day and spends all her spare time caring for her Nan who has recently been diagnosed with Dementia. Chloe’s life changes really quickly when her Nan’s condition begins to decline so rapidly she’s forced to move the older lady into a residential care facility. As Chloe faces this huge life change she also becomes obsessed with a decades old, missing child case she discovers in the archives at work. Chloe begins to lose touch with her Nan as she becomes more and more entangled in the lives of the missing child’s parents who have never given up hope that their daughter might someday come home.

I’m not going to say too much about the missing child storyline in The Imposter except to say it had me hooked from the start and still on tenterhooks four hundred pages later. Wharton is a brilliant storyteller with a gift for building up tension and introducing believable twists in her plotlines. As a Dementia narrative I also found The Imposter very convincing. It includes so many familiar tropes I’ve come to associate with Alzheimer’s: wandering, confusing times and not recognising family members, forgetting when and what is appropriate to eat. Anyone who’s spent time with a family member or loved one living with Alzheimer’s will recognise both Grace’s behaviour patterns and the ways in which Chloe attempts to protect and reassure her Nan. There’s a scene near the start where Chloe is forced to buy yet another identical electric kettle to replace the ones her Nan has melted on the hob, which I’ve experienced personally with family members who have Dementia. Wharton’s depiction of Chloe is also spot on. Chloe both resents and relies upon the support of the care facility and social worker and Wharton does a wonderful job of capturing her frustration. It’s abundantly clear that Wharton has done a huge amount of research into Dementia and as a result Grace is one of the more believable and accurate of the characters I’ve encountered in my reading so far.

I was also incredibly relieved to find that Dementia has not been reduced now to a plot device in The Imposter. The storyline which explores Grace and Chloe’s relationship runs parallel to the more thriller-like storyline in the novel and exists as a wonderful piece of character development, allowing us to get an insight into who Chloe is and how her relationship with her Nan has developed. I really enjoyed this novel. It was great to see a character with Dementia included in such a well-developed way in a novel which is not primarily about Dementia. I’m looking forward to reading more of Anna Wharton’s work.

The Imposter was published by Mantle Books in 2021 

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Book Reviews

“Minor Monuments” by Ian Maleney

Minor Monuments is a collection of personal essays by Dublin-based writer Ian Maleney. They’re all set around his family’s small farm on the edge of a bog a few miles from the River Shannon. They explore issues around belonging, place, home, memory and nature and weave together Maleney’s personal experience with his musings on literature, art and, most frequently, sound. Maleney uses sound recordings to capture and explore the landscape of his childhood. Interspersed throughout the essays is the story of his grandfather, John Joe’s diagnosis and experience with Alzheimer’s.

“I wanted to listen hard to his final emergence; to capture his life in the last stage of becoming – to record the person still forming even as he began, contrapuntally, to unravel.”

Minor Monuments follows John Joe right through to his death and funeral. As the older man slowly loses his memories and connections to the landscape, Maleney is questioning his own sense of belonging and how he’s come to think of his home. He spends as much time as he can with John Joe, documenting his stories and paying careful attention to how he interacts with the world around him. At several points in the book, I had the sense that I was encountering a kind of teacher/disciple scenario, with Maleney patiently waiting for his grandfather’s lived inheritance to pass on to him.

“A wake like John Joe’s is not just an opportunity to remember these people and their stories, but also a chance to share and build on those memories, to pass them on and to bind them closer to the people who are living out their own stories in the same place.”

The prose is neat and sparse but imbued with warmth. It’s like reading someone’s meandering thoughts as they pick their way through a difficult time. It’s impossible not to imagine the two men -one old, one young- sat together companionably, their very different world experiences stretching between them, their mutual fondness apparent throughout. This is such a gentle book. It’s deeply respectful and extremely attentive, as you might expect from a writer used to recording sound.

I also deeply appreciated the portrayal of a rural, working man with dementia. It’s rare to see this character portrayed in literature and yet I frequently come across older men and women, like John Joe, who develop dementia whilst living in farmhouses and on land that’s been in their family for generations. For these people, a move to residential care can be nothing short of earthshattering. They are intrinsically bound to their land.

I love this book. It was my favourite non-fiction read of 2019 and I’ve pressed it upon many people since then. Maleney writes with honesty and tenderness, always holding his grandfather as an equal. There’s an awful lot of wisdom in both what he writes and how he writes it. These essays are rich with humility.

Minor Monuments was published by Tramp Press in 2019

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Book Reviews

“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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Book Reviews

“This Excellent Machine” by Stephen Orr

This Excellent Machine is the first volume in an anticipated trilogy of childhood novels by Australian writer, Stephen Orr. Set in a single neighbourhood of a small Australian town in 1984 it is narrated by seventeen year old Clem who lives with his mother, his sister, Jen and his Pop, Doug. Pop has been a surrogate father to Clem since his own dad disappeared when he was a small child. Clem is incredibly close to his grandfather. They fix up cars together in the drive and have been plotting for some time to take off on a road trip, using an old treasure map to track down a seam of gold. As the novel begins, the family are just beginning to realise the implications of Pop’s Alzheimer’s diagnosis. Whilst Dementia isn’t the primary focus of the novel -it’s more a coming of age kind of piece- Pop’s illness is a theme consistently revisited throughout the novel and shown to impact Clem’s life in significant ways.

There were several thing I really appreciated about Orr’s depiction of Alzheimer’s in This Excellent Machine. Primarily I liked the way Pop’s confusion and deterioration is explored within a community context. He goes out of his way to make the point that, at this time, Australians living at this socio-economic level, rarely considered external care provision. Pop’s Alzheimer’s is managed within the family but it is also heartening to see neighbours and members of the local community taking responsibility for the older man. They look out for him when he wanders off. Two of them agree to accompany Clem and Pop on their road trip. They even encourage him to continue tinkering with cars as a means of retaining his sense of self and ongoing purpose. I appreciated the idea of community support which Orr is exploring. Having grown up in a small, rural community, in the eighties, it’s something I recognised immediately. 

I also liked the way Orr gives Doug a certain amount of autonomy. Doug might have Dementia but his family and the community around him still look to him to contribute to decision making processes. They respect his opinion and look up to him. At one point in the novel Doug attempts to help a young delinquent get back on the straight and narrow and we are given a glimpse of the way people living with Dementia can continue to contribute meaningfully to society. 

This Excellent Machine is far from being a utopian portrayal of living well with Alzheimer’s. Orr doesn’t shy away from exploring the more difficult aspects of the illness. Doug’s daughter is often frustrated by her father’s condition and their relationship is under strain throughout the novel. Clem finds it hard to watch the man who has been like a father to him, decline and lose interest in the world around him. Orr also includes a heartbreaking scene where Doug gets to be a participant on the TV quiz show, Wheel of Fortune and becomes confused and frustrated while it’s being recorded. All this to say, I found This Excellent Machine to be an accurate and balanced portrayal of an older working class man experiencing the early stages of Alzheimer’s. It manages to hold the balance between honesty and hope throughout. 

This Excellent Machine was published by Wakefield Press in 2019 

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Book Reviews

“Wrinkles” by Paco Roca

There are so many ways to tell a story and just as many avenues for engaging a reader. An issue as diverse, wide-ranging and various as dementia will require the whole gamut of an artist’s creative ability as they seek to find effective means of telling a story that isn’t their own. Spanish author, Paco Roca was one of the first to record the dementia experience in a graphic novel. Originally published back in 2007, Wrinkles was later translated into English and republished. Wrinkles follows Ernest, an older man, living with Alzheimer’s disease as he is admitted to a residential care facility and at first struggles to settle into his new home.

We see the residential care facility and the residents themselves through Ernest’s eyes as he’s given a tour of the building and begins to join in with daily activities. The visual aspect of the book allows Roca to be playful with how he interprets Ernest’s gaze. Some images give us a realistic idea of what Ernest is seeing, others allow us an insight into the mental associations and memories his brain is dredging up as he tries to process his new surroundings and friends. Roca’s images also add a layer of humour to the text. One page features eleven almost identical illustrations of older people dozing beneath a clock as time progresses from morning to night. The final cell on the page depicts Ernest being asked if he’s had a good day. The visual is kind of like an illustrated joke and also effectively conveys the monotony of nursing home life much better than any phrase or sentiment could.

Roca also leaves space between his illustrations in order to convey the idea of memory and language loss and also the notion of endless, unstructured time. Not everything is said or stated because, with dementia, not everything can be quantified or expressed in words. Towards the end of the book Ernest’s Alzheimer’s develops and more and more cells are left without speech bubbles. We see Ernest still present even as his ability to communicate gradually begins to disappear. On the final pages of the book Ernest’s features are entirely removed from his face and we’re left contemplating the troubling image of a man whose identity has been removed by the illness he’s living with. Though Roca deliberately includes a final page of images -Ernest present in past memories- I’m not sure I agree with the way he’s depicting a person living with dementia in the final stages. The message he’s conveying seems to be Ernest is no longer Ernest; his only meaning is to be found in his past.

The author spent a great deal of time visiting retirement homes, observing and talking with residents as he researched this book. The results are stunning and very effective. There are moments when it’s impossible to convey with words, exactly what’s going on in the mind of someone living with dementia. In Wrinkles, Paco Roca has shown how visual images can often speak volumes when words begin to fail.

Wrinkles was published by Knockabout Limited in January 2015