Tag: Residential Care Facility

Categories
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 

Categories
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 

Categories
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 

Categories
Book Reviews

“An Unravelling” by Elske Rahill

Irish author, Elske Rahill’s second novel is an epic beast. It follows the lives of four generations of women in a large family, over a particularly turbulent period. Molly is the matriarch of the family. She’s in her eighties and very much focused upon helping her granddaughters, Cara and Freya bring up their young children. Molly is the wealthy widow of a famous Irish artist and as her life draws to a close she looks back on her childhood and early marriage and also becomes increasingly concerned with how she’ll provide for her granddaughters and great grandchildren after her death. Molly has a substantial estate and is closer to the younger generation than her own three daughters. When her health fails and Molly begins to develop dementia, issues concerning the will and financial provision threaten to tear the family apart.

Rahill is a beautiful writer. Her prose is rich and full of poetic imagery. An Unravelling is quite a long, slow read but I appreciated the way it took its time to get underneath the characters’ skin, bringing each of the women to life for the reader. Molly, in particular, is incredibly well-written. This is a character living with dementia who has both a past and a meaningful present. She is an essential part of her granddaughters’ lives, full of warmth and wit and humour. Rahill tracks her unravelling with great care. Molly’s language and meandering reminiscences perfectly convey both the dementia experience and an inherent respect for this dignified and forthright character.

I also appreciated the deep dive Rahill takes into the practicalities of dementia care. This is a novel which very much explores the unpleasant world of finances in regards to healthcare provision and inheritance. It’s something I’ve often heard talked about but rarely see reflected in dementia narratives. Molly’s own mental unravelling mirrors the unravelling of her family as they let issues surrounding finances pull them apart. An Unravelling is a book about women within a family unit; the bonds they form and how these bonds are placed under strain. It’s a wonderful, immersive read and another great addition to the canon of Irish dementia narratives. I would highly recommend.

An Unravelling was published by Head of Zeus in 2019 

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 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

“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
Book Reviews

“This is Paradise” by Will Eaves

I am a massive Will Eaves fan. I love the way Eaves puts a sentence together. I love the kindness at the heart of his writing, the wit, the lyricality, the gentle humour. All my Will Eaves books are heavily underlined. They are full of sentences and thoughts I want to return to and unpick further. This is Paradise is no exception. Published in 2012 it’s a kind of family saga, following the Alldens who live in suburban Bath. We meet them first when their four children are still living at home. The children flutter round the edges of their parents’ oftentimes complex marriage offering the reader insight into their father, Don and their mother, Emily. The family is noisy and chaotic -easily recognisable- but not without its fair share of problems. Don has a philanderer’s eye. Emily, a tendency towards martyring herself.

The novel is a game in two halves. In the second half the four Allden children are grown up, though troubled Clive, is still struggling to sever the links with home. They return to be with their mother in her final days. Emily is dying in a residential care facility. She has dementia and no longer recognises any of her family members. As they spend a few days around her bedside and come together for the funeral service both the cracks and the bonds in the Allden family begin to make their presence known. It is a very familiar story: a family revealing both their best and worst sides when placed under pressure. Eaves captures each small snapshot of Emily’s death with grace and searing honesty.

There are only a few sections of this novel which specifically focus on dementia. However, those that do are particularly well-written and really begin to interrogate issues around residential care. Much is made of the pressure the care staff are under. They’re understaffed, under-supported and under-trained. And yet, Eaves takes great pains to repeatedly show us how kind and compassionate they are in their dealings with both Emily and her grieving family. His portrait of a British care facility with its smells, its sounds and its ever-changing roster of residents is so accurately written I could picture every detail of Emily’s experience. I also felt Eaves does a wonderful job of recording the nuanced reactions of each family member: they all respond differently to Emily’s illness and subsequent death. From her husband who infantilises her and finds a new girlfriend while she’s still alive, to her brother who continually tries to draw attention back to himself, to Clive whose grief is bottomless and Liz, who brings her own nursing experience to the table and is consequently quite pragmatic in the way she deals with her mother’s condition. These are believable portraits of real people reacting within the spectrum of their own emotional capability. As with all of Eaves’ writing, the characterisation is nuanced, realistic and beautifully developed. I could’ve read another 300 pages quite easily.

This is Paradise was published by Picador in 2012 

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
Films

Away From Her

Canadian director, Sarah Polley’s Away From Her was one of my first encounters of a dementia narrative on the big screen. Polley wrote the screenplay based on Alice Munro’s beautiful short story, The Bear Came Over the Mountain and was determined from the outset to cast Julie Christie in the lead as Fiona, a smart, passionate woman who is enjoying her retirement until she’s diagnosed with Alzheimer’s. We follow Fiona and her husband Grant (Gordon Pinsent), along a familiar journey from slight confusion, to wandering, a diagnosis and memory test and finally the moment where Fiona herself decides it’s best if she moves into a residential care facility.

It’s refreshing to watch a film about dementia which focuses on a couple’s relationship. Away From Her is frank in the way it deals with issues around sex, intimacy and separation. We see Grant and Fiona making love for the final time on the day he moves her into the care facility. He’s heartbroken by the mandatory 30 day no contact policy. They haven’t been apart in more than forty years. By the time he returns to visit Fiona, she’s no longer clear about who he is and she’s developed a close attachment to another resident; a man called Aubrey (Michael Murphy), whom she’d been friendly with as a girl. Grant is now faced with a dreadful dilemma. His wife is only happy in the company of another man. Any attempts to separate them lead to deep depression on Fiona’s part. 

This is a stunningly acted and sensitive exploration of a really difficult issue which occasionally arises in dementia care. Polley gives us an insight into both perspectives, adding layers of nuance when she reveals that Grant is not entirely blameless. He’s been unfaithful to Fiona in the past. It’s also an incredibly accurate snapshot of what residential care can be like. Polley’s quick to point out the profound differences between the first floor, where the cognisant residents live, and the much-dreaded second floor where people are moved when their dementia develops. It’s a familiar and thought-provoking portrait of residential care, raising important questions about dignity, independence and quality of life. Away From Her is also a captivating story with fine performances from the central actors including the always fabulous Olympia Dukakis who’s a star turn as Aubrey’s wife.

Away From Her was directed by Sarah Polley and adapted from Alice Munro’s short story The Bear Came Over the Mountain. It was released in the UK in April 2007