Author: Jan Carson

Categories
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

Categories
Book Reviews

“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 

Categories
Book Reviews

“The Built Moment” by Lavinia Greenlaw

Lavinia Greenlaw’s most recent poetry collection, The Built Moment is split into two sections, the first of which explores her father’s journey with dementia. The poems included are, in my opinion, some of the finest and most memorable writing about dementia I’ve come across whilst reading extensively on the subject. I’ve repeatedly found that poetry, with its use of white space, metaphor and resonant language provides a good vehicle through which to express some of the more difficult to quantify aspects of dementia. Greenlaw’s writing blew me away. 

There’s a warmth to these poems which reveals the relationship between the poet and her father and this often translates into a kind of desperation where the poet admits her own inability to help or arrest the progress of the illness, “I tell him I am saving him as quickly as I can.” There are even moments of genuine humour. I particularly enjoyed “The Finishing Line” where the poet’s brother, sitting at his father’s bedside, shares an anecdote about running a race dressed as a gorilla. It reminded me of the muddle and mixed emotions of tending to a much-loved family member’s illness where all the feelings sit close to the surface: sorrow, grief, and also joy. 

However, the thing I found most moving about The Built Moment was Greenlaw’s ability to pin down in words, the experiential side of dementia both from her own and her father’s perspective. It’s notoriously difficult -I know, I’ve tried- to write about an experience as strange as dementia when it isn’t something you’ve been through yourself in your own mind and body. Greenlaw uses evasive, slippery, meandering phrases and words to effectively convey how it must feel to be present and also becoming absent at the same time. “My father has lost his way out of the present./ Something is stopping him leaving, nothing becomes/ the immediate past.” One poem is called “My father has no shadow” and another, “While he can still speak,” in which he talks to his hands and legs as he gets dressed, suggesting he now sits at some distance from his own self. 

It’s the use of language which has had me returning to this collection repeatedly over the last year or so. Greenlaw more than most writers I’ve come across is using words to say the unsayable. She does so with a masterful lightness of touch.

The Built Moment was published by Faber & Faber in 2019

Categories
Films

What They Had

Bridget (played by Hilary Swank), rushes back to her hometown of Chicago after her mother is found wandering, confused in a snowstorm. Her father Burt, (Robert Foster) and brother, Nicky, (Michael Shannon), spend Christmas arguing over whether their mother, Ruth, (Blythe Danner), should be moved into a residential care facility or retire to Florida as the couple had planned. Ruth’s dementia has progressed rapidly. She confuses her children, wanders around the house at night and at one point even makes a pass at her son, mistaking him for someone else. Burt’s reluctant to let his wife move out of the marital home. Nicky’s bluntly adamant that Ruth needs professional care. Bridget sits on the fence, constantly trying to keep the peace and, in the background, Ruth wanders in and out of conversations, talked about, but rarely talked to.

In What They Had, Elizabeth Chomko has captured a very recognisable scene from contemporary American family life. Moving a loved one into permanent residential care is always going to be an emotional experience and Chomko’s managed to include so many of the tropes familiar to this scenario. This film will really resonate with many people who’ve been through a similar experience. This is a family trying to make a difficult decision when there’s no easy solution to the problem they’re facing. For the most part What They Had honestly and realistically explores this distressing situation with a fair degree of warmth and the occasional humorous moment.

Unfortunately, Chomko seems to bottle her nerve towards the end and the final third of the movie resolves too neatly for my liking. Burt passes away quite suddenly. Ruth has a miraculous moment of cognisance where she reassures her daughter that it’s all for the best. He has died at the perfect moment. Any later and she wouldn’t have remembered who he was. Any earlier and she’d have been devastated by the loss. This scene irked me. It felt like a contrived Hallmark moment and completely unbelievable; by this point in the movie Ruth’s dementia was very advanced. With her mother’s blessing and her father no longer around to raise objection, Bridget and Ruth road trip out to California, (Thelma and Louise style in a Cadillac), where Ruth takes up residence in one of those flowery, sunny, quaint care facilities where everyone’s content and smiling. It’s as close as you’re going to get to a happy ending in a movie which centres around dementia. It didn’t work for me. The first two thirds of the film are pretty decent (with stand-out performances from Danner and Shannon), everything goes downhill from there.

What They Had was directed by Elizabeth Chomko and released in the UK in May 2019 

Categories
Book Reviews

“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 

Categories
Book Reviews

“Happiness” by Aminatta Forna

Happiness is definitely a London novel. The city is as much a character in the book as the two main protagonists around whom the plot resolves. Attila is a recently widowed, Ghanaian psychiatrist, visiting London to present a paper about trauma at an academic conference. Jean is a recently divorced American who is spending some time in London whilst conducting an extended study into urban foxes. The two, quite literally, bump into each other whilst crossing Waterloo Bridge and strike up a friendship which eventually becomes a relationship. As the novel progresses Jean helps Atilla search for his niece’s missing son, mobilising the network of volunteer fox-spotters she’s developed across inner city London. The people who populate this novel, like the foxes Jean tracks and the traumatised individuals Atilla has worked with in the wake of various conflicts, exist on the margins of society and yet are very much interdependent and reliant upon each other for survival. Forna is asking her readers to consider questions around co-existence and community.

Whilst in London Atilla also takes every opportunity to visit his former lover and lifelong research partner, Rosie who is living in a residential care facility. Rosie has developed early onset dementia and is increasingly incapable of recognising Atilla when he visits though she retains some motor memory of their physicality. Atilla is determined to find better care arrangements for Rosie. He’s concerned that the nursing home staff aren’t being as vigilant with her care as they could be. In Atilla’s absence, Emmanuel -the carer whom Rosie had been particularly close to- has been fired and she’s been unable to bond with anyone else. Atilla’s particularly concerned about Rosie’s loss of appetite and disinterest. She isn’t receiving much stimuli or attention in the home. He conspires to set her up in her own apartment where he will pay Emmanuel to be a live-in carer. This plan never comes to fruition as Rosie’s condition deteriorates quickly and she eventually dies. Forna’s depiction of dementia only takes up a small amount of the novel but it’s significant for its portrayal of how care staff are treated and the pressures they face within a residential care setting. On the whole it’s an accurate depiction of dementia : Rosie exhibits ongoing confusion, an inability to tend to her own physical needs and, by the novel’s conclusion has become occasionally violent. Forna intersperses these darker snapshots of the dementia experience with moments of genuine fondness and even levity between Atilla, Rosie and Emmanuel.

I thoroughly enjoyed Happiness. The metaphor of the fox community which runs throughout the novel exists as a perfectly drawn exploration of interdependence between all the living beings who call London home. These complex ideas of community, connection and dependence also exist in the care setting which Forna gives us a glimpse into

Happiness was published by Bloomsbury in 2018 

Categories
Films

“Robot and Frank”

American director Jake Schreier’s charming sci-fi, comedy drama, Robot and Frank is set in the not too distant, imaginable future. Frank, (played by Frank Langella), is an aging master burglar now living alone in the country. He’s beginning to show the first signs of dementia and his adult children Madison (Liv Tyler) and Hunter (James Marsden) are becoming increasingly concerned about his well-being. The house is falling into disrepair. Frank’s not eating properly and becoming increasingly confused. Unbeknown to his absent children, most days he walks into a neighbouring town to flirt with Jennifer (Susan Sarandon), a librarian in a grand old library which is about to be shockingly modernised and to shoplift from a local gift store. There’s talk of Frank being moved to a memory centre for his own safekeeping. Frank is incredibly resistant to this. He’s spent substantial chunks of his life incarcerated for his crimes and wishes to retain his independence for as long as he can. 

A solution comes in the shape of Robot (voiced by the wonderful Peter Saarsgard). Robot is a kind of AI cross between a butler and a professional carer. He looks like a tiny stormtrooper and soon has Frank’s house and life back in shape. Initially reluctant to embrace Robot, Frank soon warms to the device when he realises Robot’s the perfect sidekick to help him pull off his final heist. The two go on to plan and execute a beautiful piece of cat burglary. There’s a wonderful scene where the local police sergeant, asks for Frank’s help to crack the case. It looks exactly like the kind of perfectly executed crime he’d have pulled off in his younger days. The police officer doesn’t even entertain the thought that an older Frank might still be very capable.

I really enjoyed Robot and Frank. It’s a sweet little film with beautiful performances by Langella and Sarandon. It also raises some interesting questions about the use of AI and technology when it comes to providing dementia care. Frank actually begins to develop a friendship with Robot. His presence in the house goes from being an unwelcome intrusion to something which is both practically and emotionally beneficial; this being the holy grail all technological solutions to healthcare issues are aiming for. The film also takes a gentle look at how ageing is perceived both within familial and societal settings. Both Frank’s children and the people he meets at the library tend to undermine his abilities and dismiss him in different ways. There are some lovely comic touches and a fabulous onscreen rapport between Robot and Frank. If anything, this film goes a little light on the more problematic aspects of assisting someone with dementia to live independently. However, it’s still a heartening and thought-provoking watch.

Robot and Frank was directed by Jake Schreier and released in the UK in March 2013 

Categories
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 

Categories
Events

Dementia: Feel it Through Fiction at Imagine Festival

If you missed Dr Jane Lugea’s recent talk at Imagine Festival Belfast you can catch up here.

Dementia: feel it through fiction Has reading fiction ever made you laugh, cry, or feel something? How can words on a page create characters and represent fictional experiences to such an extent that we not only believe, but are moved by them? A recent ‘boom’ in fiction representing dementia has inspired QUB researchers to investigate how the language is used gives an insight into the experience of people living with dementia. This interactive talk explores how dementia is represented in fictional language, how readers respond to it, and why. The speaker is Dr Jane Lugea (Senior Lecturer of English Language at Queen’s University Belfast), who specialises in Stylistics, the language of literature. Dr Lugea is Principal Investigator on an ongoing AHRC-funded project, ‘Dementia in the minds of characters and readers’, which investigates how dementia is represented in literary language and how it offers a window into understanding the condition. The project benefits from the expertise of Co-Investigators Dr Gemma Carney (Senior Lecturer in Social Policy at QUB) and Dr Paula Devine (Co-Director of ARK Ageing Programme), as well as Dr Carolina Fernández Quintanilla. Writer and older people arts facilitator, Jan Carson, is curating a great range of outreach activities around the project’s themes: dementia, creative writing and reading, and understanding each other better through the power of narrative. Find out more: dementia fiction blog • @fictiondementia

Categories
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