Categories
Book Reviews

“Back to Blackbrick” by Sarah Moore Fitzgerald

Cosmo’s grandad is beginning to exhibit the early signs of Alzheimer’s. A team of social workers appear at the house he shares with his grandparents, hoping to test Grandad Kevin’s memory. If he doesn’t pass this memory test, Grandad will be dispatched to a nursing home. Cosmo is particularly close to his grandparents after his brother’s death and his mother’s subsequent move to Australia, leaves him living in their house. Desperate to help, he follows his grandad’s garbled instructions and uses an ancient key to let himself into Blackbrick Abbey. As soon as he steps through the gates, Cosmo is transported back in time. He meets his grandad as a young boy and gets caught up in a 70-year-old adventure, meeting the people who shaped his grandad’s life. As he plunges deeper and deeper into the strange world of Blackbrick, Cosmo continues to take extensive notes on the past, intending to use these notes to help Grandad Kevin pass his memory test. At the risk of giving away too many spoilers, I’ll leave my synopsis there.

Irish writer Sarah Moore Fitzgerald drew from her own experiences of her father’s dementia when crafting this beautiful snapshot of the relationship between a young man and his beloved grandad. The depiction of dementia is both accurate and shot through with moments of genuine humour and humanity. There are some genuine laugh out loud moments here and also a few scenes which moved me to tears. Grandad Kevin is far from being the stereotype often encountered in dementia narratives. And whilst the magical elements in the book bring a touch of whimsy and other worldliness to the story, at no point does Moore Fitzgerald shy away from confronting the harsher realities of watching a loved one journey with dementia. This, at heart, is a realist novel with a subtle element of the fantastical. 

Back to Blackbrick is full of wonderful, well-crafted and memorable characters and the plot kept me gripped from start to finish. I’d thoroughly recommend it for late primary and early high school readers who enjoy funny, adventure-filled novels. It also offers a great opportunity to introduce themes around dementia and begin important conversations on this subject with younger kids.

Back to Blackbrick was published by Orion Children’s Books in 2013 

Categories
Films

The Father

The Father is playwright, Florian Zeller’s directorial debut. He co-wrote the screenplay with fellow playwright Christopher Hampton based on his own 2012 play, Le Père. I’ve read and written about Le Père on several occasions. It’s an important dementia text in its attempts to allow the audience to see the world through the eyes of someone living with dementia. It is a disorientating, confusing experience but also an incredibly powerful one and none of these sensibilities have been lost in moving the play to the big screen. Though the film still feels reminiscent of a stage play -most of the scenes take place within a handful of rooms- Zeller uses the set to his advantage. The London flat in which the film takes place changes subtly throughout: colour schemes blend, furniture moves and is replaced, and the flat’s layout is almost impossible to comprehend. As in the play, Zeller uses the physical environment of his set to convey a sense of disorientation. It is a very effective technique.

The storyline is a simple one. Anthony, (played impeccably by Anthony Hopkins who received an Oscar for this role), is an older man living with dementia in his daughter’s flat. The daughter, Anne, also beautifully played by Olivia Colman, (honestly this is the cast of dreams), is her father’s sole carer and increasingly distressed by the progress of his illness. Anthony runs through a series of in-house carers. He struggles to get on with anyone. He confuses time. He mistakes Anne’s flat for his own and most worryingly sometimes does not recognise Anne or her husband, (a rather mean, Rufus Sewell). Zeller uses different actors to show the audience what Anthony is seeing when he adamantly insists that this strange woman is not his daughter and this strange man isn’t married to her. The technique is so effective and unsettling that I began to feel as if The Father might be classified as a horror movie. Several of the tropes were present. The domestic familiar made threatening. The oppressive lighting and use of colour. The constant undermining of reality. The set, in particular, reminded me of the house in the Australian horror film The Relic where walls move and doors disappear, mirroring the confusion of a person living with dementia. 

The Father is a difficult watch. It’s beautifully executed and almost perfectly acted by all involved. As an experiment in empathetical viewing it’s really ground-breaking. The viewer is pitched into Anthony’s shoes and spends the following 90 minutes as confused and disorientated as he is. However, there’s little in the way of character development. Aside from a small backstory about his dead daughter we discover very little about Anthony as a man who has lived a long life. For the purpose of the film, he is simply a man with dementia and at times I found this a little reductive though I don’t think Zeller’s intention is to provoke sympathy or even soft empathy for a fully-developed Anthony. He wants the viewer to see the world through the eyes of present day Anthony where dementia has become his dominant narrative. I also appreciated the inclusion of both the examples of elder abuse, (from Anne’s husband), and professional care staff treating Anthony with exemplary kindness and dignity. This is a nuanced portrayal of caring which shows both the worst and best aspects of the care system. One last small point of critique. The characters in The Father are very posh and capable of spending enormous amounts of money on professional care for Anthony. It would be nice to see more examples of working class characters navigating the care system. As frequently noted, there is a distinct lack of diversity when it comes to portraying characters living with dementia. 

The Father was directed by Florian Zeller and released in the UK in June 2021 

Categories
Book Reviews

“The Last Days of Ptolemy Grey” by Walter Mosley

Ptolemy Grey is a true character. He’s ninety-one years old and lives alone in his cluttered apartment in Los Angeles. He’s done an enormous amount of living in his ninety one years. He’s witnessed incredibly violent acts of racism. He’s married twice and lost both his wives though his extended family is so large it’s hard to keep track of who everyone is. He’s accumulated a small fortune in gold coins and cash savings which he keeps hidden in his apartment because Ptolemy Grey does not trust banks. He’s repeatedly threatened by the female drug addict who lives across the parking lot. His grand-nephew Reggie’s just been killed in a drive by shooting. AND he has dementia. There’s so much going in Ptolemy Grey’s life, the dementia is almost an afterthought. Though it’s made his life increasingly difficult. With Reggie dead, he’s not sure who is going to look after him. He can’t remember who to trust. He’s holed up in his tiny apartment where the bathroom no longer works and there’s so much rubbish piled everywhere, he can’t even get to his bed to sleep.

Seventeen year old Robyn meets Ptolemy at Reggie’s funeral. She becomes a kind of surrogate daughter/granddaughter/niece to the old man. She moves into his apartment and very soon has both Ptolemy’s living situation and his life licked into shape. Robyn finds a doctor who’s willing to include Ptolemy in a fictional drug trial. A course of experimental injections takes away his dementia so he’s suddenly able to remember his past and present with vivid clarity. The doctor’s warned him that this recovery is temporary. It will ultimately hasten his death but Ptolemy’s willing to take these odds so he has enough time to settle his affairs and ensure Robyn will be looked after when he dies.

I thoroughly enjoyed The Last Days of Ptolemy Grey. After so many middleclass, white narratives, it was refreshing to read a dementia novel set within a working class, African American community. It offered me a welcome insight into how dementia and ageing is viewed within this community. The extended family is expected to take responsibility for Ptolemy. It’s striking that this is perhaps the first dementia narrative where residential or external care isn’t mentioned at all. The narrative strand involving the complete return of Ptolemy’s memory is completely unbelievable, (I don’t necessarily mean this as a critique). It’s a plot device which Mosley uses in order to allow Ptolemy a chance to bring some level of catharsis to his family and the people he cares about. It works and reads as credible. As do the more realist descriptions of Ptolemy’s life before he encounters the wonder drugs. I was struck by the early descriptions of the squalor and isolation Ptolemy is living in. It resonated with several of my own experiences of older people living alone beyond the point where they’re fit to look after themselves. 

This is both a great read and a captivating portrayal of the dementia experience. I fell in love with the character of Ptolemy Grey. I could easily have read another two hundred pages or more.

The Last Days of Ptolemy Grey was published by Riverhead Books in 2010 

Categories
Book Reviews

“The Visiting Hour” by Frank McGuinness

This brand new play by Frank McGuinness is absolutely bang up to date. Set in a residential care facility during the Covid 19 pandemic it explores the impact of Lockdown upon older people and their loved ones. The Visiting Hour takes place over the single hour in a week when a woman is permitted to visit with her elderly father. Tight restrictions are in place and she is not allowed to enter the building and must communicate with her father whilst perched on a window outside his room. At intervals an announcement reminds her not to outstay her welcome. Only one hour is permitted for each visitor. These restrictions serve to disorientate the father who is in the early stages of dementia and already showing signs of confusion. He isn’t too sure who his daughter is, when or where they are. The Covid restrictions thoroughly baffle him. He can’t understand why his daughter is shouting at him through a window or why she can only stay for an hour. For many people who’ve visited a loved one in a nursing home, hospital, residential care facility or even in isolation at home during the Pandemic these scenes will be painfully familiar. It is heartening to see how writers are already beginning to explore how Lockdown restrictions have impacted the elderly and particularly those living with dementia.

Over the course of the hour the father and daughter banter about events from the past. It is unclear whether these incidents have actually happened or are fabricated anecdotes the father likes to recount. The line between real and unreal is blurred throughout. The two protagonists talk and argue, laugh and even sing together, revealing a profound connection and a degree of fondness. In some ways they seem dependent upon each other. Though the daughter is now looking out for her ageing father’s physical and mental wellbeing, the play reveals how in the past he has cared for her. The Visiting Hour is very much a contemporary play; poignant, recognisable and scarily relevant. In a very gentle, subtle way it asks big questions in regards to how isolation and loneliness, particularly during the Pandemic years, will negatively impact upon our older people. It’s also a beautiful and honest portrait of the relationship between a father and his daughter and how this sort of relationship evolves and changes with time.

The Visiting Hour was published by Faber and Faber in 2021.

Categories
Book Reviews

“Krapp’s Last Tape and Other Short Plays” by Samuel Beckett

I’m a little hesitant about adding these short Becket plays to our list of dementia narratives. I doubt that Beckett intended them to be read as an insight into dementia, though his work leaves itself so intriguingly open for interpretation I can’t imagine that he’d be surprised by this particular approach. It’s a long time since I last saw Krapp’s Last Tape performed but as I’ve been reading through dementia novels and plays over the last few months it has frequently come to mind. It is essentially a short play about an old man remembering back over his life. He relistens to tapes he’s recorded of himself at various younger stages and then amends and adapts these memories based upon how he now views the experiences he’s been through. As a metaphor for how memory evolves, fractures and repeats within the mind of a person living with dementia, I think it’s stunningly accurate. The old man’s fleeting awareness of what he’s doing, trawling through these tapes of his former life always reminds me of the Robert Frost poem, “An Old Man’s Winter Night,” and, in particular, the lines, 

What kept him from remembering what it was
That brought him to that creaking room was age.
He stood with barrels round him—at a loss.

Beckett’s characters with all their physical limitations and constraints seem incredibly familiar when considered in light of how ageing and indeed dementia can impact a person’s physicality.

Having re-read Krapp’s Last Tape, I progressed on to other short plays by Beckett and couldn’t help but see a possible dementia reading in many of these pieces. Memory and age are a frequent theme in Beckett’s work, as is confusion around issues of identity, repetition and the passage of time. To be honest, though these texts don’t claim to be dementia narratives, and I’m not too sure whether they’ve been considered as such before, Beckett’s use of language comes the closest I’ve seen in print text to conveying the sense of both internal confusion and linguistic disruption which occurs during the later stage of dementia. Take this section from That Time, for example: 

When you started not knowing who you were from Adam trying how that would work for a change not knowing who you were from Adam no notion who it was saying what you were saying what you were saying whose skull you were clapped up in whose moan had you the way you were.

I’ve read multiple verbatim transcripts of people living with dementia which sound incredibly similar to this and other sections of Beckett’s plays where phrases are repeated, sentences fractured and narratives disarranged and devolved until they lose their sense. I’m now intrigued. Am off to read some of Beckett’s longer plays to see how they stand up as dementia texts. 

Krapp’s Last Tape and Other Plays was published by Faber and Faber in 2009. 

Categories
Book Reviews

“The Story of Forgetting” by Stefan Merrill Block

The Story of Forgetting is Stefan Merrill Block’s debut novel. It is a sprawling work which merges realism and fantastical elements in a story spanning hundreds of years and many generations of the same family. During its best moments the storytelling is beautiful and captivating. At other times the novel feels a little unsure of itself and disjointed. There are so many strands to the narrative it seems unclear what Block is trying to accomplish. 

Three separate storylines are interwoven throughout the novel each of which follows a member of the same family line as they deal with the implications of a rare (fictionalised), version of hereditary early onset Alzheimer’s. We meet Millicent Haggard, an English emigrant who brings the strain of the illness to Texas when she moves to America in the early 19th Century. Abel Haggard, an ageing hermit who is holed up alone on a sprawling Texas after early onset Alzheimer’s has claimed his twin brother. And fifteen year old Seth Waller, Abel’s grandson who is trying to trace the roots of his family’s genetic illness after his mother is diagnosed with early onset. The novel also incorporates a family folk tale  -passed from one generation to the next- about a fictional land called Isidora where people are free of the sorrows of memory.

As a concept The Story of Forgetting is really interesting. I’m a magical realist myself and always drawn to writers who used the fantastical as allegory and metaphor in their work. However, whilst the allegory of Isidora is employed in quite a heavy-handed way throughout this novel, it just never seems to connect properly with the narrative. Clearly Block put a lot of effort into the research for this novel. The notes at the close of the book list his reading and research. I thoroughly respect writers who put the hard work into learning about dementia before they attempt to write about the illness in a fictional context. There’s a lot of pseudo-science woven through the novel and at times I did feel it distracted from the characters and the flow of the story. The characters of Abel and Seth are the parts I enjoyed most here and they felt somewhat overshadowed by both the fantastical elements and the clumsily deployed pseudo-science. I also struggled a little with the language Block used to describe Alzheimer’s. It’s consistently referred to as a familial curse and there’s no attempt to explore the possibility of living well with a dementia diagnosis. Some of the portrayals of people living with dementia feel really accurate but pretty hopeless which sits at odds with the whimsical, fantastical tone of the novel. The Story of Forgetting is a decent first novel with some really interesting ideas which ultimately failed to take off for me.

The Story of Forgetting was published by Faber and Faber in 2008 

Categories
Films

The Savages

The Savages is a 2007 black comedy set on the East Coast of the USA. It stars Laura Linney, the late great Philip Seymour Hoffman and Philip Bosco and was directed by Tamara Jenkins. Linney and Seymour Hoffman play brother and sister Jon and Wendy Savage. It’s fair to say, they’re both already struggling a little when they receive a call to tell them their father, Lenny, who’s living with his girlfriend in Florida has developed dementia. When the girlfriend passes away, Jon and Wendy suddenly become carers for their dad. They are not particularly close to their father. Neither has happy childhood memories from the period after their mother abandoned them. Caring doesn’t come naturally, but they’re determined to help their dad as much as they can.

Jon finds a place for Lenny in a residential care facility close to his home in Buffalo. There’s a heart-breaking scene where Wendy accompanies a confused and increasingly distressed Lenny through the airport and on to the plane as he relocates to the East Coast. Much is made of the fact that he doesn’t even own a winter coat. The Savages chooses to fix its gaze on Lenny’s children, rather than his experience of dementia and residential care. However, there are a number of truly poignant scenes where Lenny reacts to a memory test and is asked to help plan his own funeral arrangements which I found uncomfortable viewing though very recognisable. The film’s main focus seems to be an in-depth exploration of what it feels like to find yourself suddenly a carer for a parent who’s developed dementia.

Seymour Hoffman and Linney are fantastic, as you can imagine, playing a pair of dysfunctional creatives who were already struggling to embrace adulthood and are now navigating an increasingly complex set of responsibilities. There’s not much comedy in this black comedy and it is, at time, a difficult watch. However, I found it incredibly honest and it raises some very important questions about the nature of duty when it comes to care. I also found a few moments where Jenkins allows hope to bubble to the surface and in the last ten minutes of the movie there’s reason to believe the Savage siblings have been positively changed by their experience as carers. I’d recommend this film. It’s so well-written and perfectly acted. It left me with a lot to think about.

The Savages was directed by Tamara Jenkins and released in the UK in 2008 

Categories
Book Reviews

“The Wilderness” by Samantha Harvey

I’m going to be honest from the get go, The Wilderness was one of the first fictional dementia narratives I read and it remains one of my favourites. This was my third re-read and Samantha Harvey’s precise and evocative prose actually improves with each subsequent read. There’s a lot going on in this novel. It centres around Jake. Jake has Alzheimer’s. Jake is piecing his life together to make a timeline for his memory doctor. As he tries to order the events of the last seventy odd years his ability to maintain the facades he’s built up begins to slip. Jake is a man who’s constructed his sense of self out of evasions and deceptions. As the novel progresses and his dementia develops he finds it harder and harder to recall the truth of who he is, what he’s done and how his life has played out. Jake’s sense of self gradually unravels as Harvey deftly paints a picture of an old man who is more easy to empathise with in his vulnerability and confusion than he has been at any other point in his life. 

A cast of women hover around the edges of Jake’s story. His wife, Helen. Joy, the woman he slept with in the early days of his marriage. Eleanor, who has always loved him and now finds herself Jake’s carer, at the end of his life, when he can no longer remember who she is. His mother, Sarah whose presence overshadows his entire existence, colouring his perception of everything. And his young daughter, Alice who died as a child yet reappears to him in adult form as the dementia begins to take hold. All their stories swirl around the novel, repeating, intertwining and fracturing. The reader is offered multiple perspectives and interpretations of the same events and incidents. It’s confusing and at times frustrating. It’s exactly as I imagine an experience of dementia might be and this is why I continually return to The Wilderness as an example of what a dementia narrative could and should be. It’s all consuming. It’s experiential. It drew me in and felt almost like a journey through an actual wilderness and yet it’s also shot through with moments of precise clarity, of incredible beauty and profound pathos. It is, in short, a marvellous book.

The Wilderness was published by Vintage in 2009 

Categories
Book Reviews

“The Built Moment” by Lavinia Greenlaw

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

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

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

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

The Built Moment was published by Faber & Faber in 2019

Categories
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