Tag: Man

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“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

“Malcolm Orange Disappears” by Jan Carson

Summarising a book you’ve written yourself is a difficult and quite disconcerting thing to do. Malcolm Orange Disappears was my first published novel and, whilst I’m still quite fond of it and certain characters who appear within its pages, six books later, I can definitely see where it could be improved. The story focuses upon eleven year old Malcolm Orange, whose father has abandoned the family in Portland, Oregon. As he attempts to process this troubling situation Malcolm begins to notice he is, quite literally, disappearing. Malcolm’s mother has found a job as an orderly in a retirement village which comes with accommodation. As Malcolm settles into his new home he begins to befriend the elderly residents and together they go on a quest to stop him from disappearing.

Malcolm Orange is a magical realist text which uses metaphor and allegory to explore the various ways the older people in the retirement village feel as if they too are beginning to disappear. The loss of memory is explored at length. Many of the residents are living with Dementia and can’t remember important parts of their own stories. Malcolm and his friend Soren James Blue help the residents to form a kind of support group in order to capture one aspect of their history before it disappears.

“The People’s Committee for Remembering Songs existed solely for the purpose of remembering songs.” It meets several times a week and allows the residents to collectively recall the important songs which have shaped their identities. This section of the novel takes an imaginative look at how community and creative group exercises can, at best, help to slow the advance of Dementia and also help participants to find a sense of support and solidarity in being with others who are going through a similar experience. There is a particularly poignant scene towards the end of the novel where the residents all sing together in unison and experience a kind of miraculous release which doesn’t remove them from the realities of the illness but allows them to feel free and powerful as autonomous individuals. Much of this section was inspired by my own experience of volunteering with an Alzheimer’s Society, Singing for the Brain group.

“Emboldened by the miracles unfolding in every corner of the Treatment Room, the People’s Committee for Remembering Songs whooped and hollered, raising their wrinkled chins and hands in anticipation of further healing. The noise was deafening.”

As mentioned above Malcolm Orange is far from a perfect novel but it does give some interesting insight into how ageing, and in particular Dementia, is viewed from a child’s perspective. It explores the use of Dementia as a literary device for introducing fantastical elements into a story and also touches upon issues of sexuality, disability and autonomy in regards to those living with Dementia within a residential care environment. I hope it also advocates for the power of story in attesting to who a person living with Dementia once was and continues to be. 

Malcolm Orange Disappears was published by Liberties Press in 2014 

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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

“The Old King in His Exile” by Arno Geiger

Translated from the German by Stefan Tobler

I’m beginning to notice something of a trend in my reading. Writers who have a parent living with Dementia will often take the opportunity to write about the experience. Many of these books are much more interesting and, dare I say it, better written than the regular Dementia biographies. In The Old King in His Exile, Austrian novelist, Arno Geiger turns his attention to his father and charts the progress of his illness over several decades. The slow progression of the text was one of the main things I enjoyed about this book. Geiger has made a point of letting the story take its time. 

“With this book, I wanted to take my time. I saved up for six years. At the same time, I wanted to write it before my father died. I didn’t want to tell his story after his death. I wanted to write about a living person. I felt that my father, like everyone else, deserved to have an open-ended destiny.”

The book reads more like a novel than a regular biography. There are small snippets of conversation included, frequent trips back into the past as Geiger presents the reader with his father’s history and small vignettes of everyday life. It is beautifully written and meandering in tone. There’s a gentleness I loved about the way Geiger approaches his father’s illness. He gives the older man room to be what he needs to be. There’s no sense of rushing his story, no sense of trying to impose sense upon the narrative. This is not Dementia utilised as a plot device. This is carefully and respectfully bearing witness to the last few years of a loved one’s life. I particularly loved the image Geiger used to describe his father’s gentle decline.

I half-remembered a phrase about ending something in beauty. If my father carried on like this, then the same would be true for him as I had once read in a Thomas Hardy novel, which talked of an old man who approached death as a hyperbolic curve approaches a straight line – changing his direction so slowly that, in spite of the nearness, it was unclear that the two would ever meet.”

I know I will return to this text. It has offered me a blueprint for how to write about a person living with Dementia with dignity, respect and above all things, space. It seems almost wrong to have to point this out, but many Dementia memoirs are more focused upon the person recording the life, than the person whose story it actually is. The Old King in his Exile is definitely Geiger’s father’s story, yet in writing it with so much openness and genuine fondness, Geiger constantly reveals more and more about his own character.

The Old King in His Exile was published by And Other Stories in 2017 

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“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

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Book Reviews

“Rain Birds” by Harriet McKnight

Australian writer, Harriet McKnight’s debut novel, Rain Birds is set in rural Australia, on the edge of the wild and beautiful Murrungowar National Park. McKnight has a wonderful ability to capture the natural world in her writing and I particularly enjoyed the way this novel interweaves the personal experience of how dementia impacts a couple’s relationship, with themes of global and environmental responsibility. It’s pretty obvious from the outset that McKnight knows and understands the world she is writing about.

Alan and Pina have spent thirty years living together in isolated Boney Point, when Alan begins to develop early-onset Alzheimer’s. Pina feels as if she’s losing contact with her partner as he starts to forget things, lose his language capability and disappear into his own head. Then the arrival of a flock of rare, black cockatoos offers them a means of connecting, both to each other and the moment they’re currently living through. Conservation biologist, Arianna, is also obsessed with the black cockatoos. She’s trying to encourage them back to their natural breeding site before the flock dies out. Pina wants the birds to stay in her backyard where Alan can get the comfort and benefit of seeing them every day. Both women bring their own agenda to the issue of the cockatoos. Neither is being deliberately selfish but there doesn’t seem to be an easy solution to their problem. Either Alan will suffer or the birds will ultimately be put at risk. McKnight uses this small, and very localised dilemma, to highlight much bigger environmental issues. 

Rain Birds is essentially Pina’s story. She’s struggling to come to terms with Alan’s Alzheimer’s, (“I have to stop thinking of him as if he’s already dead,”) and fixates on the black cockatoos as a means of preserving some degree of connection with him. As the novel progresses, she becomes more and more irrational about the birds, losing perspective as she tries to hold on to the one aspect of her life with Alan which she can actually control. 

The novel includes some incredibly honest and very recognisable insights into what it’s like to live with a partner who’s developed Dementia,

“How she followed him around in circles, shutting drawers, finding his jacket in with the crockery, the milk left under the sink with the cleaning stuff, directing him to the bathroom when he couldn’t find it, the tantrums, the anger, the forgetting, always the forgetting. The way it could all turn a woman slowly insane.”

McKnight effectively uses the cockatoo situation as an extended metaphor for all Pina’s frustrations and disappointment. In the specific and personal she finds grounds to explore big universal themes of anger, control and loss. Rain Bird’s a wonderful novel, beautifully written and full of rich descriptions of the natural world. It’s one of the first accounts of Dementia and environmental issues I’ve come across. I sincerely hope to read more. 

Rain Birds was published by Black Inc in 2017 

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A Trilogy of Wonderful Grandpa-themed Picture Books

These three stunning picture books aimed at young readers provide ample opportunity to begin conversations with small children about how what it’s like to watch someone they love grow older. All three explore various forms of ageing, including forgetfulness and the loss of memory. Whilst they don’t explicitly mention Dementia, the implication is there, and the topic is covered in a range of really sensitive age-appropriate ways. The beautiful illustrations enhance the impact of these books and also offer different opportunities to ask questions and begin discussions with young readers, exploring their own experiences of ageing in a safe and enjoyable way.

Grandpa Green – Lane Smith

Grandpa Green is an amazing gardener. In this beautifully illustrated book, his great-grandson leads us around his garden which is populated by all sorts of amazing topiary sculptures: animals, people and even an enormous wedding cake. Grandpa Green is getting old and he sometimes struggles to remember all the amazing things that have happened to him. But it’s ok, because “the gardens remembers for him” and he has a fantastic great-grandson who likes nothing more than to tell Grandpa’s story using all his imaginatively-shaped plants.

Grandpa Green was published by Two Hoots in 2017

My Great Grandpa – Martin Waddell

With illustrations by Dom Mansell

Gran might say “it’s sad to be like Great Grandpa is now!” but his little great granddaughter knows it’s not. She takes her Great Grandpa out on a wonderful adventure around the village he lives in. Great Grandpa tells her all the history he can remember and when his memory runs out, she fills in the rest of the details. Together they make a fantastic team. She doesn’t feel at all sorry for her Great Grandpa though she can see he doesn’t have as much energy as he used to have and sometimes he seems a bit muddled. She’s sure, “Great Grandpa knows things that no one else knows. In his mind he goes places that no one else goes.”

My Great Grandpa was published by Walker Books in 1990

Granpa – John Burningham

A little girl and her grandfather share a very special relationship. Though Granpa’s not as strong as he used to be and sometimes he can’t go out to play, through gorgeous leading questions and beautifully illustrated pictures of the fantastical worlds he conjures up we can see his imagination’s still working well. Granpa might be exhibiting the signs of early Dementia or he might just be playing make believe with his little granddaughter. Burningham doesn’t feel the need to make this explicit and this decision serves the story well. Granpa is a subtle and very clever book which illustrates the way a child’s ability to enter into her grandfather’s confusion about reality could actually help her cope with his Dementia in a loving and imaginative way.

Granpa was published by Puffin Books in 1984

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Book Reviews

“The Father” by Florian Zeller

Translated from the French by Christopher Hampton

With a big screen adaptation forthcoming later in 2020/early 2021 I thought I’d revisit French novelist and playwright, Florian Zeller’s incredible play Le Père, (or in English, The Father). Zeller makes bold, creative decisions with this play which explores the Dementia experience of an older Frenchman named André. André becomes the lens through which we see the world. The characters, dialogue, time frame and set of the play are all deliberately ambiguous as Zeller attempts to capture the confusion of André’s experience on stage.

The play itself is set in what André takes to be his Parisian apartment, although it is also at times his daughter’s apartment. Zeller’s stage instructions convey the confused nature of this space.

“Simultaneously the same room and a different room. Some furniture has disappeared: as the scenes proceed, the set sheds certain element, until it becomes an empty, neutral space.”

Scenes repeat with slight variations, additions and subtractions to the dialogue. This makes it incredibly difficult to follow any linear time pattern through the play. The audience is catapulted into André’s world where time means very little anymore. The past is the present is the past and memories repeatedly come back to haunt him, whilst other details, like the death of his younger daughter, seem to be permanently misplaced. Most worryingly of all Zeller employs different actors to play André’s daughter and her partner so when he does not recognise Anne or Pierre, the audience understands his confusion because we do not recognise them either. These people might be speaking Anne and Pierre’s lines, but they no longer look anything like them.

The Father is a simple and yet hugely ambitious attempt at embodying the Dementia experience in a piece of art and allowing it to be accessible to the audience members as they watch the play. It incites a feeling of confusion, disorientation and frustration not unlike Dementia itself. However, it is also shot through with moments of heartfelt emotion and beautiful, poignant language such as the section towards the end of the play, when André, greatly diminished by his illness and the confusing experiences he’s been through, likens himself to an Autumnal tree.

“I feel as if… I feel as if I’m losing all my leaves, one after another.”

I’m so looking forward to seeing Florian Zeller’s own film adaptation of The Father later in the year and am confident that the all star cast including Anthony Hopkins, Olivia Colman and Rufus Sewell will do justice to this powerful play.

The Father was published by Faber and Faber in 2015.

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“Goodbye, Vitamin” by Rachel Khong

There are a number of reasons why I really enjoyed the American writer, Rachel Khong’s debut novel. For one thing it’s very funny. It tackles a relatively serious subject with gravity where gravity’s required and also buckets of humour and wit. Sometimes the humour and pathos are mixed together, as in the following exchange between Ruth and her father, whose Alzheimer’s is beginning to make him confused.

“I’m your daughter,” I say.

“You sound different,” he says.

“How?” I say.

“More sonorous,” is what he says.

Khong isn’t afraid to laugh in the midst of the saddest moments. There’s something very familiar about this as the absurdity of living with Dementia often means experiencing the whole spectrum of emotions simultaneously. The other thing I particularly enjoyed about Goodbye, Vitamin is the portrayal of a person who is attempting to maintain a normal existence even as their Alzheimer’s takes hold. For many people there is a period after diagnosis when they continue to work and live as closely as possible to their normal routine. This is rarely depicted in films or books. Ruth’s father, a much-loved history professor, doesn’t want to stop teaching even though his boss and colleagues have noticed his behaviour’s becoming erratic and have asked him to step down from his teaching role. What follows is an elaborate plan whereby Ruth, conspiring with his students, set up sessions off campus so her father can continue to teach the classes he loves.

“The idea Theo and I plant into Dad’s head is that because we’re learning about the Los Angeles Aqueduct, we should take an educational field trip to go visit it.”

Ruth herself is the narrator of the novel. Her story is recounted in chronological diary excerpts where readers are presented with a snapshot of her personal life alongside her attempts to care for and connect with her dad. Ruth isn’t having an easy time of it. She’s thirty years old, recently single and back home living with her parents. She’s frustrated that there isn’t a miracle cure for either her dad’s condition or the mess she’s made of her life. In the absence of medical remedies she begins to learn that love and being gentle with each other is the best way to navigate this turbulent time. Ruth seems to find it easiest to make sense of the journey her father is taking if she takes each moment for what it is and savours their time together. There might not be much she can do for her father, but she can spend significant time with him.

“Today, I caught you in the garage, eating the peaches from the earthquake kit. I joined you. We drank the syrup and then we drank the packets of water.

Here I am, in lieu of you, collecting the moments.”

This is such a warm and generous wee novel. It’s not without its heartbreaking moments. At one point her father, realising what Ruth’s sacrificing, encourages her to move on with her life and I found this exchange particularly poignant

“You didn’t want me feeling obligated to stay. You said you didn’t want me feeling guilty. You said you didn’t want me seeing you act loony tunes.”

Khong has Ruth respond with sensitivity and quick humour, giving her father a dose of daughterly cheek. It’s in these small and incredibly familiar moments that Goodbye, Vitamin really soars. This is such a realistic picture of a tight knit family dealing with a difficult situation in the only way they know how: food, time, love and taking the piss.

Goodbye Vitamin was published by Schribner in 2017

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“We Are Not Ourselves” by Matthew Thomas

We Are Not Ourselves was one of the very first Dementia narratives I encountered and it remains one of the best examples of writing about Dementia I’ve come across in any novel. It is an epic saga, in the old-fashioned sense; a novel which follows an American couple, Eileen and Ed Leary from childhood, through courtship and marriage to the establishment of their own family. It’s very much a rags to riches, boy meets girl, American dream story and the plot arc is incredibly familiar until around half way through the book. In his early fifties, Ed’s behaviour starts to become increasingly erratic. Eileen is concerned about her husband and eventually convinces him to see a doctor. “If nothing’s wrong with him,” she tells her own doctor, “I’m going to divorce him. I can’t take it anymore.”

Eventually Ed is diagnosed with early onset Alzheimer’s. The news turns the Leary’s world upside down, but Eileen insists from the outset, “we are going to carry this with dignity and grace.” This is a novel about a family who stick together through good times and desperately difficult times. It’s also a novel about how a life change as radical and disruptive as a Dementia diagnosis can turn cosy notions of the American dream upside down. Eileen manages to get her husband included in a clinical drug trial and even fantasises that the drugs he’s given might return him to his old, ‘normal’ self. However, in reality, she knows it doesn’t work like this with Dementia,

“His real self wasn’t hiding in there waiting to be sprung for a day of freedom. This was his real self now.”

We Are Not Ourselves excels beyond other Dementia narratives in its handling of the specifics associated with an early onset diagnosis. Thomas explores family dynamics: Ed’s reluctance to tell his son, Connell about his illness and his fear that the condition might be hereditary. He takes a close look at the Leary’s marriage, as the role of provider quickly shifts. There’s also an incredible amount of realistic detail around the financial support available for people living with Dementia in the USA. At one point Eileen is encouraged to divorce her own husband as this would classify as eligible for financial assistance. The novel also refuses to shy away from the upsetting, and very realistic depiction, of a youngish man with Dementia attempting to retain his job, his status, salary and dignity for as long as he can, whilst the illness makes this more and more difficult to do. Thomas works in issues around class, finances and societal shame, raising big questions about where, if anywhere, Dementia fits into American society with its notions of personal and familial success.

There’s a section towards the end of this novel where Connell, as a young man, steps up to become one of his father’s carers and it remains the most straightforward but powerful piece of writing about Dementia I’ve ever read. This section stayed with me long after I’d finished the novel and still comes to mind from time to time. Thomas writes so well about the complex shift in relationship between parent and child as responsibility for physical and emotional support moves from the father to the son. There’s no excess of emotion or sentiment here, just beautiful, honest, matter-of-fact writing about how difficult it is to feed and change your own adult father, and also what a strange privilege this is.

At almost 600 pages, We Are Not Ourselves is a reasonably long read, but it’s the sort of novel which draws you in. Thomas introduces his readers to the Learys slowly, ushering us into their home, their family and, ultimately, their problems so that, by the final few chapters, we feel part of the family, fully able to empathise with their joys and their pains.

We Are Not Ourselves was published by Fourth Estate in 2015