Tag: Carers

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Book Reviews

“Frangipani House” by Beryl Gilroy

Frangipani House, Guyana born novelist Beryl Gilroy’s first book is set in her own birthplace. The novel’s title refers to a residential care facility where elderly women are sent to live out their final days. Mama King, the novel’s chief protagonist is forcing to move into the home by a delegation of absent children and grandchildren. She’s quite convinced that she’d be better off managing by herself and goes out of her way to be as obstreperous as possible, frequently clashing heads with the home’s owner and ultimately making a break for freedom, to live on the streets with a rag tag collection of other homeless people who give her the care and kindness she has not experienced from either her family or the people they’ve paid to look after her.

Frangipani House, like many texts of its era, does not use the term dementia, however it’s clear that Mama King is becoming more and more confused as the novel progresses. She frequently forgets where and when she’s living, mixing the past with the present and has conversations with people who aren’t present. She is not as capable of looking after herself as she’d like to think. Mama King also gives us an insight into how the other residents of Frangipani house are treated. Several are much more confused than she is. Including one ninety year old lady who inconveniently passes away, just before her birthday celebrations. The staff decide there’s no point wasting all the party food. They wheel the dead woman out in her chair and tell the other residents she’s just napping so they can continue to celebrate. A number of anecdotes like this reveal how the elderly residents are not treated with the respect and honour they deserve.

Frangipani House is a wonderful exploration of how ageing is perceived within this particular African community. The younger people talk a lot about respecting their elders and yet, when it comes to delivering physical care, they are quick to institutionalize their parents and delegate responsibility. Gilroy also explores the role of the older woman. Mama King has been a mother not only to her own daughters, but also to their children. Her girls, having emigrated to America, send their children home to be raised in Guyana. Gilroy’s novel questions how fair this system is. The children expect their mothers to provide free childcare, but when it comes to caring for these women in their later years, the same children shirk their responsibility. Frangipani House is a slim novel yet it is rich with detail and colour and full of well-placed observations about what it means to be elderly, female and African.

Frangipani House was published by Heinemann Educational Books in 1986 

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Book Reviews

“The Leisure Seeker” by Michael Zadoorian

Ella and John have been together for more than sixty years. Now in their eighties Ella has developed terminal cancer whilst John is living with dementia. Aware that they don’t have all that much time left together they decide to leave their home in the American Midwest and take one last long road trip across America to the California coast. They don’t inform their grown up children of their plan. They sneak away in their 1978 Leisure Seeker RV, (a campervan for those not familiar with the American terminology) and follow a route they’d followed years ago, when their children were much younger. 

John drives, though he’s increasingly confused and occasionally wanders off, sometimes even threatening Ella with violence. Ella organises everything, though she’s often in agony with her illness and becoming progressively more tired as the road trip drags on for days and days. Back at home, their children are frantic, imagining every variation on the worst case scenario. Little do they know. The couple are held up at knife point, suffer a bad fall and, on several occasions, John gets lost leaving Ella panicking and unsure what to do. When Ella phones home to check in with the children, she doesn’t tell them about any of this.

The Leisure Seeker is a strange little novel. It’s very readable, but the tone is quite odd. It’s hard to tell whether the reader’s meant to see this last adventure as a joyous celebration of a life well-lived, or an example of selfishness on Ella’s part. Though she isn’t technically behind the wheel, this is very much her road trip. John does as he’s told throughout the novel. For me this raised real questions about autonomy and freedom. It’s impossible to know whether a man with a cognitive impairment would willingly choose to drive across half of America in a campervan if he understood how dangerous it was. There’s also a strange change of tone at the novel’s close. For two thirds of the book it feels a little like a buddy movie: upbeat, funny, slightly sentimental, and then towards the novel’s end things take a dark turn. I don’t want to give away any plot spoilers but the final scene kind of calls into question the book’s basic premise, that it is possible to live well and fully with dementia. 

Saying all this, for a piece of commercial fiction, the dementia narrative is reasonably accurate and seems to be well-researched. The novel is narrated throughout by Ella so it’s her understanding of her husband’s condition and experience the reader is being presented with. I think this is important to note. From the perspective of dementia, the main questions which The Leisure Seeker left me with were all around autonomy and control. Is it ok that Ella decides everything for John, even if she is married to him?

The Leisure Seeker was published by Harper Collins in 2009

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Book Reviews

“There Were No Windows” by Norah Hoult

The acclaimed Irish novelist, Norah Hoult wrote There Were No Windows during the Second World War when she was living in Bayswater, London close to the ageing writer, Violet Hunt. Hoult based her novel’s protagonist, Claire Temple very closely on Violet Hunt: garnering some criticism for how recognisable Hunt was in Temple’s character. The portrait is far from flattering. Claire Temple is a once popular society lady and reasonably successful writer who is now losing her memory. She is paranoid, delusional, frequently confused and often unpleasant to the cook, Kathleen and paid companion, Miss Jones who are now her only company. Outside the house, London is in the grip of the Blitz, with daily air raids, rationing and black out restrictions in place. Claire regularly forgets the War is going on as she drifts between lamenting her loneliness and fantasising about her former high life. Hoult has managed to create an incredibly believable archetypal spinster, (in the vein of Brian Moore’s Judith Hearne). She is not nice enough to evoke the reader’s sympathy but is pathetic enough to seem pitiful. 

The novel was first published in 1944 and is incredibly interesting because, though it doesn’t name Claire’s condition as dementia, it is one of the earliest extended explorations of the illness I’ve managed to come across in fiction. Different characters explain Claire’s behaviour using different terms. She is senile. She is doting. She is frequently called mental. This is hardly surprising. The modern usage of the word dementia is a relatively recent development. Her symptoms suggest early stage dementia. Hoult uses her character’s dialogue and internal thought process to give us a really intriguing insight into how Claire herself feels about her condition. She wanders off in her slippers and suffers from terrible insomnia. She is paranoid that the servants are plotting together and stealing from her. She has almost no short term memory and frequently repeats herself. She is, by the close of the novel, becoming aggressive and increasingly violent. None of the other characters, including the doctor, seem to know quite what to do with her.

As a period piece, There Were No Windows is incredibly useful and enlightening. It gave me a wonderful insight into how dementia was viewed back in the war years. Claire is fortunate enough to have a house and financial resources to utilise. It is likely that without finances, she would have been quickly institutionalised. And yet, her experience is far from pleasant. She has lost autonomy over her body, her finances and her creativity. She is constantly lonely, and particularly misses the intellectual company she was used to. Her staff are rude and dismissive. They don’t attempt to understand her condition. They fluctuate between bullying and infantilising Claire. There were so many moments in this novel when I wished to sit them down and explain why Claire’s dementia was causing her to act out of character. 

There Were No Windows is a stunningly written novel -perhaps even one of Hoult’s best- and I thoroughly enjoyed it as both a piece of fiction and an incredibly believable dementia narrative. There’s still so much more education about dementia which needs to take place but I’m so glad people are no longer quite so ignorant about the illness. Poor Claire’s treatment is horrific and dehumanising. I’m thankful this is no longer the norm.

There Were No Windows was published by Readers Union in 1946

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Book Reviews

“Flight” by Oona Frawley

Irish novelist, Oona Frawley’s debut novel Flight is a beautifully observed portrait of four lives intersecting. It’s set just outside Dublin in 2004 as a referendum on citizenship approaches. Sandrine is a pregnant Zimbabwean women who has left her husband and son at home seeking to better herself and ultimately gain citizenship for them all in Ireland. Sandrine finds herself working as a live-in carer for Tom and Claire, a rich retired couple who have lived in Ireland, America and Vietnam, following Tom’s career as a spice importer. Tom is now living with advanced dementia and their daughter Elizabeth hires Sandrine to look after him and also keep an eye on Claire, who is increasingly confused herself. Tom is soon moved to a residential care facility and passes away soon after. Within a few month’s Claire’s conditioned deteriorates in a similar way and she too passes away in a nursing home.

I really enjoyed reading Flight. The prose is so carefully crafted and evocative. As the perspective moves between the protagonists it’s really easy to imagine the same situation as slightly different when seen through their eyes. It’s very much a novel concerned with the idea of memory. Whilst Elizabeth struggles with how she was brought up, flitting between various countries and various homes, Claire longs for Vietnam and the lifestyle of her younger days. As her memories merge and become confused, her senses frequently take her back to Vietnam. Sandrine is also constantly interrogating her understanding of the past and what it means to belong to a place. Thrown together, the big quiet house the three women inhabit, comes to feel like a kind of dream scape where time and reality are both confused. There’s also a sense that the women are struggling to connect. They all seem to be lonely, though they’re constantly together. They don’t seem to know how to communicate with each other. It’s only when Sandrine has her baby that she and Elizabeth finally connect, bonding as equals over the baby and talking honestly about their lives.

As a dementia narrative, Flight is intriguing. There are very few of the common tropes played upon here. Neither Tom nor Claire is prone to wandering. They don’t seem to forget each other or confuse their daughter for someone else. Their journey with dementia is more of a kind of gentle erasure. They are less and less present as the novel progresses. Both pass away calmly in their sleep as if succumbing to the last stage of what’s been a kind of extended dream.

Flight was published by Tramp Press in 2014 

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Films

Quartet

Based on Ronald Hardwood’s successful stage play of the same name, Quartet is actor Dustin Hoffman’s directorial debut. The film adaptation’s absolutely packed to the gills with wonderful British actors of a certain vintage. It’s refreshing to see a film with so many meaty parts for older people. The plot’s quite simple. Beecham House is a retirement home for elderly musicians and it’s threatened with closure. When the movie opens Cedric (Michael Gambon) is rallying the troops. They’ll organise a gala performance showcasing their talents in order to raise enough money to save their home. The gala’s in need of a headline act and when Jean (Maggie Smith) moves into Beecham House, everyone assumes the concert is saved. Back in the day Jean was the star turn in a fantastic quartet comprising of fellow residents, Reg (Tom Courtenay), Wilf (Billy Connolly) and Cissy (Pauline Collins). You’ll not be too surprised to hear that their plans don’t go smoothly but eventually the gala concert takes place and the home is saved. 

As the film depicts a large residential care facility, a number of the minor characters are living with dementia. The film makes much of their forgetfulness and general confusion but shies away from exploring the more difficult aspects of the illness. For the most part, this is a very gentle exploration of dementia. The older people are depicted as a little doddery, sometimes in a comedic fashion, but never angry or disturbed. The character of Cissy, played by Pauline Collins is given a little more scrutiny. She’s clearly living with dementia. At the film’s opening Reg and Wilf discuss her condition and agree she’s starting to deteriorate. However, aside from several small incidents, (a fall which leads to a marked decline in her cognisance and a brief lapse in awareness when she tries to “check out” of Beecham House, mistaking it for a cruise ship), it is almost possible to dismiss Cissy’s dementia as an artistic affectation or part of her “ditzy” personality. I didn’t find the depiction particularly believable although I thoroughly enjoyed her character and could see Hoffman was using this aspect of her character as a device to aid the plot and the comedy.

Quartet is a thoroughly delightful film. It celebrates and champions older people and also highlights the importance of friendship and community. I’m not sure it’s the most accurate depiction of dementia I’ve ever seen but it left me thinking it was heartening to see a character with dementia being allowed to perform and show that she’s still an amazing singer. It’s also lovely to see a depiction of the kind of support networks and community between older people I often come across in the real world. 

Quartet was directed by Dustin Hoffman and released in the UK in January 2013 

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Films

Marjorie Prime

Michael Amereyder’s ambitious feature film, Marjorie Prime is based on Jordan Harrison’s play of the same name. In the film Lois Smith plays Marjorie, a role she originally played on stage. Marjorie Prime explores issues around AI and ageing in what could’ve been a really interesting way. Marjorie is an elderly lady living with dementia. Her daughter, (played by Geena Davis), and son-in-law, (played by Tim Robbins), live with her. They also employ a live in carer. The depiction of early dementia is very accurate. Marjorie is confused and occasionally forgetful but still very present and able to interact with her family. Her family have purchased a prime of Marjorie’s late husband Walter, (played by Jon Hamm), to keep the old lady company and ensure her brain is stimulated. The prime is a kind of interactive hologram. It looks exactly like Walter in his forties. It talks to Marjorie, gathering up information and memories so it can gradually become more and more human-like in its interactions with her. 

The idea of the prime is really interesting. As Marjorie’s memory fades the information she’s feeding the prime version of Walter is less and less accurate. Her son-in-law also helps to programme the prime with snippets of information he remembers about their relationship. However, in an attempt to protect Marjorie, he censors all the disturbing memories and creates a past for her which never actually existed. I thought this was a fascinating illustration ofhow loved ones often interact with people living with dementia. As memory fades, there is an opportunity to censor, adjust and enhance the stories which are recalled, thereby shaping the person’s sense of reality and ultimately, themselves.

If Amereyder had further explored this idea with Marjorie and her prime, I think this could have been an excellent film. However, I felt it began to lose the thread a little when Marjorie died and her daughter, acquires a Marjorie prime, then the daughter dies, leaving behind a prime for her husband. The final scene shows the three primes talking, sharing a simple story about the family dog which is now so mis-remembered and adjusted, it bears absolutely no similarity to the original anecdote. I’d like to have seen more of the interaction between Marjorie and her prime and perhaps a little more depth to the direction. It feels quite flat in places, a lot like watching a recording of a play. In adapting the stage version for screen, I think Amereyder could have explored a little more of Marjorie’s background and the reality of her past.

Marjorie Prime was directed by Michael Amereyder and released in the UK in October 2017

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Book Reviews

“Gratitude” by Delphine De Vigan

Translated from the French by George Miller

Gratitude is the sixth book by French novelist Delphine De Vigan. It’s a slender little novel, I might even call it a novella, and explores one simple idea in a really beautiful and tender way. Michka is an elderly lady living with dementia in a residential care facility. As her life draws to a close and her mind becomes increasingly confused she becomes more and more intent upon tracing the young couple who hid her from the Nazis as a child. She wishes to express her gratitude to these people before she dies. Marie is a young woman who visits Michka in the care facility. She’s pregnant with her first child and as she transitions into her new role as a mother she becomes more and more grateful for the way Michka cared for her as a child when her own mother was incapable of giving her the support she required. Jerome is a speech therapist who visits Michka twice weekly in order to help her retain her fading language skills. He grows fond of the elderly lady and, as she deteriorates, begins to rethink his broken relationship with his own father. Michka teaches him an important lesson about seizing every opportunity to make amends before it’s too late.

I really enjoyed this little book. Each of the characters is simply but powerfully drawn. The emotions are neither over nor under-played. I particularly appreciated the way De Vigan does not shy away from the more difficult aspects of ageing and dementia. Her story encourages the reader to sit with grief and sadness rather than try to avoid it. “Sometimes you need to acknowledge the void left by loss. Abandon distractions. Accept there’s nothing more to say.” And yet it is also an incredibly uplifting book. There is so much warmth and genuine fondness between the characters it is impossible not to acknowledge that Michka’s experience of her last days and weeks is anything other than meaningful. As the title would suggest, this is a novel about being grateful for the life you have been given, even when that life doesn’t turn out the way you’ve expected. It’s about finding peace in the midst of turmoil. It is a novel shot through with hope.  

I also appreciated the close exploration of how dementia has impacted Michka’s use of language. As a speech therapist Jerome is able to give the reader an insight into the aphasia and linguistic confusion Michka has to navigate every time she tries to speak. It’s intriguing and powerful in the English translation. I only wish my French was good enough to read it in the original version. This isn’t a high concept novel. There’s not a terrible amount of plot. It’s all about De Vigan’s exquisitely drawn characters and the way they pivot around each other, grateful for their friendship with Michka and determined to make the most of it.

Gratitude was published by Bloomsbury in 2021 

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Book Reviews

“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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Films

The Roads Not Taken

In English director Sally Potter’s most recent feature, The Roads Not Taken, the first discernible words uttered by the main character, are “everything is open.” In a sense this statement, mumbled by Leo, a writer living with Dementia, (perfectly portrayed by Hollywood A-Lister, Javier Bardem), gives the viewer a quick synopsis of the entire film. The screenplay, (also written by Potter), jumps backwards and forwards between three different points in Leo’s life. We see him as a younger man, married to Salma Hayek and mourning the death of their son, in exile from his second marriage, writing alone in Greece and finally as an older man, confused and depleted by the illness, being guided through a single day’s errands around the city in the company of his daughter Molly, (sensitively played by Elle Fanning). Everything is open at the same time in this movie. Time is fluid as Leo’s memory leaps and flits from one period to the next. Potter does a masterful job of capturing the eternal present of living with Dementia where the past can seem just as real and believable as the moment the person is actually living in. I particularly enjoyed the way the movie skipped seamlessly between the various stages of Leo’s life, leaving much unsaid, mumbled or deliberately confusing, so the viewer empathises with the confusion experienced by Leo and his family.

The strongest section of The Roads Not Taken is undoubtedly the strand set in Leo’s present. The relationship between Leo and his daughter Molly -who has taken on much of the carers role- is believable, warm and occasionally heart-breaking. We see Molly’s distress when her father wanders off in the middle of the night. We see her struggle to understand his speech and promise to, “try harder to see it from your point of view. To see what you see.” We see her frustrated when she loses out on a big job because of her responsibilities with her father. We see her irate at the way others treat Leo, speaking over him and patronising him. But what comes across most strongly in Potter’s depiction of their relationship is the way father and daughter continue to find small moments of connection even as the illness forces them apart. There’s a particularly poignant scene in the bathroom at the dentist’s when, having soiled his own trousers, Molly gives her father hers. Even in the midst of humiliation and confusion there are moments when this movie manages to laugh and yet there’s no schmaltzy ending here, no neat conclusion or moment of epiphany. Leo and Molly’s situation is just as complex and difficult at the end of their day together as it was in the opening credits. Neither does Potter attempt to deify Leo or paint Molly as a saint. Both are flawed, occasionally failing characters. This is what makes them believable. 

Bardem is wonderful in this movie. He has a huge presence onscreen and the sheer bulk of his body, though slowed and atrophied by Dementia, refuses to be relegated to the ranks of a shadowy invalid. He is enormously present throughout. The camera often lingers painfully close to his face, exposing every wrinkle and pore. We are forced to look straight and deliberately at Leo as a person, present with his illness. Here, it is impossible to ignore the person living with Dementia. The Roads Not Taken takes an unflinching look at Dementia and our treatment of people living with the illness. To some extent, this unflinching personal gaze makes the viewer feel culpable in the way society has othered, dismissed and ignored the Dementia experience. I don’t think this is any bad thing.

The Roads Not Taken was directed by Sally Potter and released in the UK in September 2020 

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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