Tag: Carers

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Book Reviews

“Grandpa’s Great Escape” by David Walliams

I don’t make a habit of criticising other author’s work. I know how difficult it is to write a novel. I know that the beauty of a book is often in the eye of the beholder and everyone has different tastes. What gives me the right to make a value judgment about a novel? However, every so often, a book comes along which leaves me so riled up I’m afraid I can’t keep from being critical. 

I’ve never read any of David Walliam’s kids’ books before. I knew they were incredibly popular – NUMBER ONE bestsellers, according to the cover- and I also knew many of my friends and colleagues in the kids’ book world had reservations about both Walliam’s work and also the increasing popularity of children’s books written by celebrity authors. I’m not going to wade into that argument, but I do think they are voicing legitimate concerns and, if Grandpa’s Great Escape is similar to the rest of Walliams’ work I’d have to say I have huge issues with his lazy and borderline misogynistic portrayal of women, his lazy, cliched, offensive depictions of BAME characters and the slightly snide and sneery way he writes about working class people. Putting these reservations aside for the moment, however, I will attempt to focus on Walliams’ exploration of dementia in this novel.

Dementia is not mentioned by name in Grandpa’s Great Escape but as the novel begins with the line “one day Grandpa began to forget things,” and Walliams goes on to outline how he’s taken to wandering off at night, confusing the past with the present and does not recognise close family members, it’s fair to say Grandpa has developed dementia. The novel’s plot outlines his adventures with his grandson Jack. Swept up in an extended delusion that he’s still living in the days of WW2 when he served his country as a fighter pilot, Grandpa runs away from home, hides out in a spitfire in the Imperial War Museum, is incarcerated in an old people’s home which he mistakes for a Prisoner of War camp, leads a mass break out from the home and eventually steals a spitfire from the Imperial War Museum which he flies away in. The plot is quite frankly absurd, but it is a children’s book and I’m all for wild flights of fancy in literature aimed at both children and adults. The problem here is the tone. Most of the outlandish events are written with such flippancy that the suspension of disbelief disintegrates instantly. Walliams has often been accused of being diet-Dahl but he lacks Dahl’s ability to believe his own magic. The made up stuff feels made up and I doubt it would make it past the discerning imagination of most eight year olds. It is badly written nonsense.

I’d be annoyed if this was all Walliams was offering his readers, but I think Grandpa’s Great Escape is so much worse than a poorly written piece of children’s literature. It’s attempting to address an important issue; presenting a character with dementia to countless young readers who might well have a grandparent or loved one living with the illness. As such, it’s unforgivable. Grandpa’s dementia is like no dementia I’ve ever encountered in almost fifteen years of working in this area. He can’t remember his family, confuses times and dates, forgets things and yet manages to mastermind elaborate escape plans, fly a spitfire plane, enter into complicated conversations and at all times remain fastidiously and neatly dressed in full army regalia. It’s quite clear from this portrayal that Walliams has done no research at all into how dementia would actually impact an elderly man or what effect the condition might have on his young grandson. Furthermore, the depiction of the residential care facility Grandpa’s moved into is terrifying. He’s drugged, physically abused by carers and isolated from his family. If I were reading this novel, as a young person whose grandpa had dementia, I’d be both terrified by the possibility he might be incarcerated in a Colditz-style care home and also full of the false hope that he might make a miraculous recovery from his illness. 

At best this book is badly written. At worst it’s downright harmful and instils a false narrative about dementia. I wish all those children, (or perhaps parents), who’ve made it a NUMBER ONE bestseller had instead picked up one of the amazing books for kids I’ve previously highlighted on the blog. 

Grandpa’s Great Escape was published by Harper Collins in 2015 

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Films

Falling

Falling is actor, Viggo Mortensen’s debut effort as both a writer and director and it is a stunning accomplishment. Mortensen casts himself as John, a successful pilot, living in California with his husband and their adopted daughter. The movie begins, (in quite shocking fashion), with a scene on a plane. John is flying home from the Midwest with his father, Willis, (Lance Henriksen), when the older man’s dementia causes him to forget where he is and create a scene. Willis is in California to look for a smaller property as he transitions away from the large farm he’s no longer capable of looking after. However, nothing goes to plan during his visit: he manages to offend his daughter, played by Laura Dern, forgets he’s agreed to move house and is so belligerent and offensive he insults almost everyone he comes into contact with.

The film moves backwards and forwards between contemporary time -where Henriksen does an incredible job of portraying an older man who is stubborn, angry and ultimately afraid of losing his own autonomy- and the past -where Sverrir Gudnasson plays a much younger version of Willis who is not yet living with dementia but is equally stubborn, angry and intent upon wielding his authority over his family. Mortensen’s portrayal of John is notable for his forbearance and his measured approach to his father. He maintains the same patient demeanour throughout as his father rages, delivers homophobic and racist insults and humiliates him at every turn. Mortensen’s compassion is so marked it makes the moment when he finally loses his temper -railing against his father for years of abuse- one of the most powerful scenes in the film.

It’s so refreshing to come across a narrative which explores the difficult subject of how to care for someone who is not nice and never has been. This topic is rarely covered in books and movies though, in my experience, it’s reasonably common to find someone caring for a family member who has dementia despite a fractured or even abusive relationship. Mortensen handles the material with sensitivity, but he’s also unflinching when it comes to including the harrowing details. I also appreciated the way he resists stereotyping Willard. Yes, this man is a horrible, racist, homophobic, misogynist but he’s also fond of his granddaughter and displays genuine affection for her. This is a difficult watch but a necessary one. I’d thoroughly recommend checking it out. 

Falling was written and directed by Viggo Mortensen and released in the UK in February 2021

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Book Reviews

“The Twilight Years” by Sawako Ariyoshi

Translated from the Japanese by Mildred Tahara

First published in Japan in 1972, Sawako Ariyoshi’s novel, The Twilight Years was not translated into English for almost a decade. It is very much a period piece, beautifully written and faithfully translated, albeit a little dated in terms of its outlook and attitude. The novel’s main protagonist is Kyoko, a middle-aged woman who lives with her husband and teenage son in a small house in Tokyo. Her elderly in-laws live in a purpose built bungalow on the other side of the yard, although she is not particularly close to them. This changes when her mother-in-law dies unexpectedly and her father-in-law begins acting strangely. Shigezo is diagnosed with senile dementia and becomes increasingly dependent upon his daughter-in-law for care and support.

The writing is exquisite. Ariyoshi gives us a stunning snapshot of family dynamics in a modern 1960s middle class home. The novel says as much about changing attitudes to the role of women as it does about how dementia is viewed. Kyoko is expected to be solely responsible for her father-in-law’s care, including sleeping in the same room as him once he begins to wander off, bathing, toileting and feeding him. She’s also responsible for maintaining the house and feeding her family and still must manage to hold down a day job. I had to keep reminding myself that this was a portrait of a different time as I found the men’s attitudes so utterly deplorable. There is no sense of sharing responsibility for elderly care. Looking after the sick and ageing is not considered a worthy role for a man.

There’s also no question of bringing in outside help. Shigezo is not eligible for regular caring support. The specialised residential care units are all oversubscribed. His only option is a horrific-sounding mental hospital, although Kyoko is advised to avoid this option. She’s repeatedly reminded that an older person should be looked after at home by his relatives. There’s an interesting paradox at work in this novel. Older people are to be respected. Their families must honour them by caring for them in their final years. And yet, the rhetoric around ageing is quite disturbing. As the average life expectancy rises in Japan, the younger people are horrified by the reality of growing old. Shigezo is described as a burden and disgusting and on several occasions, younger members of his family express the belief that they’d rather kill themselves than end up living as he lives. At times these passages make quite hard reading. The Twilight Years is a testament to a different time. The protagonists are many years away from understanding the complexities of dementia or how a person might live well with the illness.

However, it’s not an entirely depressing novel. There are moments of simple beauty and times when we’re given an insight into more positive aspects of elderly life in Japan. I also loved the way Shigezo’s relationship with his daughter-in-law progresses and changes throughout the novel. Kyoko has always disliked and distrusted the old man but as her caring responsibilities place her in intimate proximity to him she slowly begins to form a connection and by the time he finally passes away, is incredibly fond of her father-in-law.

The Twilight Years was published by Peter Owen: London in 1984 

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Book Reviews

“The Housekeeper and The Professor” by Yogo Ogawa

Translated from the Japanese by Stephen Snyder

Memory and memory loss are reoccurring themes in Japanese novelist, Yoko Ogawa’s fiction. Last year I read and thoroughly enjoyed her most recent novel, The Memory Police which is entirely focused upon the power and importance of memory. Here, in a much earlier novel, The Housekeeper and The Professor, Ogawa focuses upon a close set of characters and explores the relationship between a professional housekeeper and carer, the older mathematician she is paid to care for and her ten year old son whom she often brings to work with her.

The so-called Professor of the title is an intriguing character. He’s an academic and mathematics genius who, several years previously, sustained a traumatic brain injury in a car accident and has since struggled to maintain short term memories. When we’re first introduced to the Professor he cannot remember anything which took place more than 80 minutes ago. He has resorted to pinning notes on to his clothes in an attempt to convey important pieces of information to himself. The Professor’s fondness for maths and baseball remain intact, as does his ability to reminisce about the distant past. All other thoughts and experiences, no matter how visceral or important, fade from his memory within a short time. As the novel progresses and the Professor’s condition worsens, his short-term memory gradually erodes until he finds himself struggling to remember anything and is, in the book’s final chapters, moved into residential care.

The Housekeeper and the Professor is not explicitly a novel dealing with Dementia. However, many of the symptoms displayed by the Professor are associated with various kinds of Dementia: his memory loss and disorientation, the comfort he takes from routine, his preoccupation with the past, the slow decline of his physical health and inability to connect with a carer he doesn’t recognise from one visit to the next. Therefore, it’s possible to learn about these specific experiences from Ogawa’s portrait of the Professor. I’ve included this novel in my list of texts because it explores a youngish man’s experience of memory loss, (the Professor is only in his late 50s when his condition first develops), and because it’s such a well-drawn and invaluable synopsis of the relationship which can develop between a person and their professional carer. By the novel’s close, it is quite clear that the time and attention she’s given to the Professor, mean that the Housekeeper understands him better than his own family. 

This is a gentle novel with beautifully crafted characters and due attention paid to recording the experience of memory loss with honesty and precision, but also a modicum of hope. I’ve really enjoyed Ogawa’s writing and now intend to track down more of her novels. I’d thoroughly recommend this book. 

The Housekeeper and the Professor was published by Vintage in 2010 

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Book Reviews

“Surviving Grace” by Trish Vradenburg

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

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

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

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

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

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

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

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

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

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

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Book Reviews

“A Chronicle of Forgetting” by Sebastijan Pregelj

Translated from the Slovene by Rawley Grau

Slovene novelist, Sebastijan Pregelj’s slender novel, A Chronicle of Forgetting is a beautifully written book, expertly translated by Rawley Grau. The prose is clean and elegant, allowing Pregelj to experiment with hidden meanings and images inherent within the text. The novel is set in a Slovene nursing home and focuses upon a small number of residents and staff members who we see through the eyes of one elderly male resident. It is divided up into four sections, including an opening section narrated by the main protagonist at his own funeral and a final section narrated by an unnamed carer who might be representative of the man’s inner life. The novel closes with this haunting statement, delivered over the man’s deathbed. 

“You are what has happened and what is yet to come. 

You are life as it is.”

Perhaps these words can be read as a kind of key which unlocks the entire novel. This is a book where time itself is extremely fluid. As the narrator’s Dementia develops, he slips backwards and forwards in his reminiscences. His past life and regrets blur with the present as he attempts to make amends for the mistakes he’s made. At times it’s unclear whether these grand gestures have actually been made or are simply plans the man is making for a future he might not live to see. He enjoys a romance with an elderly female resident though it’s also unclear if this only takes place inside his head. As the novel progresses, he -and by proxy the readers he speaks to- becomes increasingly confused between reality and imagination. There are several occasions within the novel where he might be experiencing visual and auditory hallucinations, common to certain types of Dementia, or he might be narrating a real experience. I enjoyed the way Pregelj refuses to patronise his readers and leaves the interpretation up to them.

Some of the classic tropes of Dementia narratives set in care facilities are absent here. There’s very little evidence of residents being infantilised. In fact, the narrator goes out of his way to emphasise his independence and the good relationships he has with staff members. He does talk at length about the physical aspects of ageing and deterioration. He describes the effects old age has had on his body including weight loss and incontinency. I was also glad to see one of the first explorations of sex between older people living with Dementia I’ve come across during my reading. However, Pregelj avoids language loss as an associated issue. The narrative voice is strong and coherent throughout the text. 

As the title would suggest A Chronicle of Forgetting is primarily a book concerned with memory; how memory is lost, what we remember and how accurate our memories are. It’s a beautiful, meandering gentle read which left me more hopeful than most Dementia narratives do. There’s a real sense of urgency running through this narrative. The man is not naïve. He knows he’s losing his grasp on reality, but he chooses not to panic and to make the most of every minute he has left. 

“Forgetting will swallow up my memories, bit by bit, until eventually I forget who I am, where I came from and why I’m here. But before that happens, I hope that for a few moments I’ll be able to put the world around me out of my mind and, without fear, sail away to somewhere else.”

A Chronicle of Forgetting was published by the Slovene Writers’ Association in 2019 

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Book Reviews

“The Granny Project” by Anne Fine

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

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

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

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

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

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

“Yes,” Ivan said.

“Just the same?”

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

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

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

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

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Book Reviews

“Take Care, Son – The Story of My Dad and His Dementia” by Tony Husband

Cartoonist Tony Husband turns his attention to a subject very close to home in this slight, but charming book which chronicles the final years of his father, Ron. We follow Ron’s journey from a Dementia diagnosis right through to his death. Told from both the perspective of Tony and his father, the story reveals the close relationship between the two and the way this relationship is significantly impacted as Ron’s Dementia takes over his life. At first Ron is able to continue living with a degree of independence. The opening sections of the book allow the reader to find out a little more about his lifestyle, family and history. He seems like a larger than life sort of man. As the story progresses Ron becomes more and more confused about his own present condition and eventually moves from the family home into a residential care facility. 

The small snippets of first person narrative and the illustrations which accompany each page give the reader a real insight into the practicalities of Ron’s decline. He laments the loss of his independence when his car is taken away and is heartbroken to discover his dog, Lossie won’t be able to stay with him in the nursing home. However, Husband is quick to point out that the move into residential care hasn’t been an entirely negative experience for his father. Ron enjoys the company of his fellow residents, the entertainment that’s laid on for them and even manages to start a new relationship with a fellow resident. He’s also delighted to discover that Lossie is welcome to come and visit. The dog proves incredibly popular with his new friends. 

Take Care, Son doesn’t go into an awful lot of depth when it comes to exploring the Dementia experience. But what Husband records is very familiar and resonates particularly strongly because each little thought and musing is accompanied by a gorgeous illustration which adds a lot to the telling of a familiar story. I also felt the sections offering the reader a glimpse into Ron’s personal thought life were really clear, insightful and loaded with meaning.

“My memories were confused, jumbled… nothing made sense, the world I knew was disappearing, it didn’t make sense and I presume I didn’t either.”

However, my favourite thing about this short book was the tone in which Husband tells his father’s story. It reads like a warm and deeply respectful conversation between a father and son who really love and care for each other. There’s so much respect and dignity implied within this story that even, in the final few pages when Ron talks honestly about facing death and Tony confronts the loss of his father, the narrative felt sad, but not unbearably so. This is a testament to a life both well lived and concluded with dignity. The whole book is shot through with little nuggets of hope and joy. 

Take Care, Son was published by Robinson in 2014 

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Book Reviews

“The Summer of Lily and Esme” by John Quinn

It’s the summer between Primary and Secondary School and everything’s changing for Alan. His parents have moved the family out of Dublin and bought an old house in a village in the country. At first Alan thinks he’ll be isolated and lonely with no one around to play with. However, within days of the move he’s stumbled upon the two old ladies who live in the cottage next door. Lily and Esme are twins. Although they’re extremely elderly now, they still believe themselves to be little girls and instantly mistake Alan for a young boy they used to play with, who died tragically on the day of their tenth birthday party. With the help of his new friend Lisa and a bunch of friendly locals, Alan works hard to piece together the mystery of what happened, the summer Albert died. There is talk of ghosts, a lot of laughter and a clandestine adventure to the local circus. Thanks to Alan’s efforts, Lily and Esme have the best summer of their lives and Alan himself learns a lot about friendship and the importance of community.

This is a gorgeous novel aimed at upper Primary school aged children. It never mentions the word Dementia though it’s clear from the outset that both the twins are living with the condition. They’re confused and frequently forgetful. They muddle their memories up with the present and are cared for by a stern live-in carer whom they’ve nicknamed Badger. Quinn does a fantastic job of capturing what their condition seems like to a young boy and, through Alan’s responses, painting a really compelling picture of what it looks like to befriend and accept a person living with Dementia and actually benefit from this relationship. A few of the references are a little dated. The Summer of Lily and Esme was clearly written in a pre-Internet age and yet this doesn’t stop it from being utterly charming and compelling. It’s a treat to read such a rich Dementia narrative set right here in Ireland. This is a very special book.

The Summer of Lily and Esme was published by Poolbeg Press in 1991 

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Book Reviews

“Memory” by Margaret Mahy

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

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

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

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

Memory was published by Harper Collins in 2002