Tag: American

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Book Reviews

“Aliceheimer’s; Alzheimer’s Through the Looking Glass” by Dana Walrath

Anthropologist, artist and writer Dana Walrath became a live-in carer for her mother Alice after her Alzheimer’s diagnosis became too much for her to manage alone. Moving her mother from her apartment in New York to the family home in rural Vermont, Walrath used the months they spent together to both record her mother’s dementia journey and forge connections which weren’t previously there. From the start, Walrath is honest about the fact that she is not particularly close to her mother and sees this period of dependency as an opportunity to bond before it is too late. I appreciated the honesty Walrath brought to the stories she tells about her mother and particularly their interactions and conversations. I also loved the humour in this book. It’s quite a gentle, upbeat account of dementia. Alice is placid and compliant throughout her illness. Walrath goes to great pains to show how her mother retained her humanity throughout her journey with dementia. I also really appreciated the way snippets of Alice’s history and the Armenian cultural tradition she belonged to is deftly woven into the narrative.

Aliceheimer’s is an unusual format. Each page contains both a small piece of observational writing and a beautiful artwork which illustrates the sentiment. The art is a mixture of collage and pencil drawing. Each scene depicting Alice is fashioned out of the cut-up pages of a copy of Lewis Carroll’s Alice’s Adventures in Wonderland. Thematically the Carroll text works marvellously as it allows Walrath to explore both the confusing and disorientating elements of her mother’s illness and the fantastical, imaginative scenarios which her dementia frequently pitches her into. I loved the use of collaged texts. It seemed the perfect medium for depicting Alice who, as a lifelong reader, was still enjoying the physical pleasure of holding a book and the comfort of being read to, long after her dementia had significantly impacted her ability to function normally in other areas of her life.

Aliceheimer’s is part of a fascinating series of publications which explore various medical issues through a combination of illustration and writing. The series is called Graphic Medicine and if the other publications are anywhere near as powerful as Aliceheimer’s I’d thoroughly recommend checking them out.

Aliceheimer’s was published by Penn State Press in 2016 

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Book Reviews

Scar Tissue by Michael Ignatieff

First published in the early 90s and concerned with late 80s America, Michael Ignatieff’s novel Scar Tissueexplores the dementia narrative at a point when much less was known about the illness. In fact the narrator, a 45 year old philosophy professor, does not use the term dementia when describing his mother’s condition. Her official prognosis is early onset senility, though the fact that he is able to describe previous generations of close relatives with similar symptoms would suggest some kind of dementia with a degree of genetic heredity. The specific diagnosis and terminology seems less important than the precise and insightful way Ignatieff goes about describing the unbreakable, and at times seemingly unhealthy bond, between a woman living with, then dying of, complications associated with dementia, and her devoted middle-aged son. Ignatieff’s fiction is so well-crafted and believable I continually had to remind myself that I was reading a work of fiction rather than a memoir.

The plot of Scar Tissue is a familiar one. A woman in her sixties begins to forget, then slowly loses her ability to look after herself. After her husband, and primary carer’s, sudden and unexpected death her sons make the difficult decision to sell the family farm and move her into residential care. It’s well-written but somewhat obvious terrain. However, there were two aspects of Scar Tissue which I found incredibly powerful and unique. Firstly, I appreciated reading an honest and powerfully written exploration of the relationship between a son and mother living with dementia. Whilst still living at home, the mother’s physical and emotional care falls almost entirely to the narrator and I found it quite refreshing to hear a man speak honestly and with tremendous kindness of how he bathes, dresses and feeds his mother, all the time ensuring her dignity remains intact.

The second thing which makes Scar Tissue a unique dementia narrative -especially amongst other similar carer-centric narratives- is the way the mother’s illness and eventual deaths completely upends the narrator’s life. Faced with the possibility of losing his connection with his mother he places every other aspect of his life -career, marriage, family- on hold and becomes almost obsessed with visiting her and caring for her. His marriage falls apart. He loses all sense of satisfaction in his job. Eventually his mental health deteriorates to a point where he no longer sees the point in life. It’s not an easy read, but Scar Tissue is one of the few fictional accounts I’ve come across where loss and grief associated with the dementia experience is explored in a really comprehensive way. As such, I found it a bleak but nonetheless important read. 

Scar Tissue was published by Chatto & Windus in 1993 

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Book Reviews

“Erasure” by Percival Everett

I’m just going to begin by laying my cards on the table. Erasure is an absolutely brilliant novel; one of the most interesting books I’ve read this year. It was recommended to me by the novelist Keith Ridgway when I asked for suggestions of novels which explored diversity in dementia narratives. The dementia aspect of the novel is quite slight but still incredibly interesting. It also provides the catalyst for much of the action in the novel. I was particularly drawn to the hybrid form of Erasure. It includes a novel within a novel, a lecture, various fragments and another intriguing plays on linear form. It doesn’t surprise me that this novel won the Hurston/Wright Legacy Award for Fiction in 2002. I’m looking forward to reading more work by Everett now.

The plot of Erasure is an intriguing one. Monk is a black American academic and writer of high brow novels which do nothing commercially. At times he seems to live in the shadow of his grandfather, father and siblings who, on the surface of things, all appear to have been more successful than he is. He also rages against the literary world and its stereotypes of black American culture. He’s particularly frustrated by the popularity of a recent novel which he believes exploits working class black culture, playing to the stereotypes. In rage he writes a short satirical novel in the same vein. He employs a pseudonym and is surprised, then slightly horrified when his ‘piss-take’ novel turns out to be a runaway success, eventually winning the National Book Awards despite his attempts to scupper it in his role as a judge. Morally, Monk wrestles with what he’s done but he also faces a more practical problem. His mother is living with dementia and requires full time residential care. Monk’s high brow books don’t make enough money to support him and his mother’s increasingly complex needs, while the novel he’s so ashamed of can keep them both in relative luxury. Erasure’s a very clever book. It calls into question stereotypes about race, class and the arts world. It’s also very funny in places and incredibly astutely observed.

As a dementia narrative it offers an intriguing picture of an older, black woman, struggling to hold on to her dignity. There’s a really powerful scene in the residential care facility when she no longer recognises her sons and a funny, but also poignant take on night time wandering where the old woman manages to row herself out to the middle of the lake. Erasure also gives a fantastic insight into healthcare provision in the USA. It does not shy away from exploring issues around financial support and class within the context of dementia. Erasure was a refreshing, irreverent and eye-opening look at race and class in modern America. Everett cleverly explores the way dementia intersects with both these issues and many more.

Erasure was published by Faber and Faber Limited in 2003 

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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 

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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 

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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 

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Films

What They Had

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

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

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

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

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Films

“Robot and Frank”

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

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

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

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

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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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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