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Caregiving in Fiction: disability & (chronic) illness representation from a different perspective

Writer's picture: The Fiction FoxThe Fiction Fox

Updated: Jan 12

Over the years, I've built up quite a repertoir of "disability-fiction", partially from my own interest, and partially through my work as an (own-voice) reviewer, sensitivity reader and editor on the subject. Often times, all books about disability or illness are thrown onto the same heap, regardless of the perspective they focus on. And yet, as I can personally attest to, the experience of experiencing a disability/illness yourself is vastly different from watching it happen to someone you love, or perhaps even take care of. Both perspective deserve representation, but don't always overlap in terms of books I'd recommend.

Featured in this list, a part of my Ultimate Guide to Disability- and (chronic) Illness Fiction, are about 25 books with a focus on the caregivers perspective. Naturally, there will be some overlap with other lists surrounding this topic, as well as with my recommendations of books about grief.



Adult Fiction


- Shark Heart - Emily Habeck Genre: magical realism Representations: degenerative illness (husband of protagonist) One-line synopsis: a heartfelt tale of a couple chronicalling the year after the husband's diagnosis with a strange affliction; one that will gradually turn him into a great white shark.

Strenghts: uses a metaphorical/magical-realist illness that turns people into animals as a striking metaphor for neurodegenerative illness. Covers various perspectives, inside and around the sickbed. Manages to be a love-story (not a romance!) through-and-through.

Weaknesses: the fantasy-illness and the (sometimes mixed) metaphors that come with it are sometimes a little silly and distract from the powerful messages it attempts to convey.


Genre: literary fiction/contemporary

Representation: Life-threatening anaphylaxis (daughter of protagonist)

One line synopsis: A family’s life is completely upended by the sudden realization of their daughters mortality, following an unexplained life-threatening case of anaphylaxis. Each family member finds their own way with- or around this newfound uncertainty.

Strenghts: this is a stunning portrait of what the realization of your child's health no longer being a guarantee. We see our protagonist go through a relatable balancing-act of wanting to shield his daughter from every danger, and also trusting her to stand on her own.


Genre: literary/contemporary fiction

Representation: dementia (father of protagonist)

One-line synopsis: A lost young woman returns to small-town New Hampshire under the strange circumstances of her elderly dad hallucinating ghost(-animals) in his house. What follows is one-of-a-kind, tragi-comic novel of life, death, and whatever comes after.

Strenghts: manages to find a relatable humor in situations that might be harrowing otherwise, whilst not making light of them. Beautifully captures the undying love that both our protagonist, as well as the community around her, carry for her dad.



Genre: literary fiction, post-apocalyptic

Representation: Angelman Syndrome

One line synopsis: in the wake of an enviromental collaps, the rich and well-off have left the city behind to escape the toxic red winds that blow in from the sea. The city is now inhabited by only those without means, or motivation to leave and save themselves. Among them is our narrator, tasked with caring for a young disabled boy, who's been left behind by his parents.

Strenghts: packs a lot of emotional-, thematic- and literary punch in very few pages and had me thinking about it for a long time after I flipped the final page. Worth it for the stunning prose alone, in my opinion.


- Death Valley - Melissa Broder Genre: literary fiction, magical realism

Representation: ICU- and hospice care (father), chronic illness (of husband) One-line synopsis: a hallucinatory trip of a novel about a woman getting lost in the Californian desert whilst attempting to outrun her own grief over both her father in the ICU and a husband whose longstanding illness is slowly worsening.

Strengths: In its own eccentric way, this is a near perfect exploration of themes of family, father-daughter-relations, caregiving/hospice care, love in all its forms and the grief that matches it. Made my favourites-list of 2024.

Weaknesses: the writingstyle and bizarreness of the imagery make this a marmite-read that won't appeal to everybody.


-  Night, Sleep, Death. The Stars - Joyce Carol Oates

Genre: literary fiction/contemporary

Representation: Coma, ICU-stay after a violent attack

One-line synopsis: a gripping examination of contemporary America through the prism of a family tragedy: when a powerful parent is admitted to ICU following a bout of police-violence, each of his adult children reacts in startling and unexpected ways, and his grieving widow in the most surprising way of all.

Triggerwarning: police violence, racially motivated violence


-  The Unseen World – Liz Moore   Genre: literary fiction/contemporary   Representation: Alzheimers disease (father of protagonist)

One Line synopsis: years after his passing, a young woman uncovers answers and grieves about a side of the life of her eccentric late father, who she never fully got to know.

Strengths: a very moving portrayal of the effects of dementia on both the person suffering from it themselves, as well as their family. I personally loved the parts where our protagonist is shown getting to know her father in retrospect by piecing together the fragments of her fathers past, as he's not able to share them with her anymore.


 How High We Go In the Dark – Sequioa Nagamatsu Genre: science fiction Representation: terminal illness due to fictional pandemic. One-line synopsis: blending the line between novel and short-story-collection, we follow a cast of intricately linked characters over hundreds of years as humanity struggles to rebuild itself in the aftermath of a climate plague.

Strength: the emotional impact of each of these fragmented stories, despite their short length.


Genre: magical realism

Representation: Aging parent

One line synopsis: Anna’s aged mother is dying—if her three children would just allow it. Condemned by their pity to living she increasingly escapes through her hospital window into visions of horror and delight.When Anna’s finger vanishes and a few months later her knee disappears, Anna too feels the pull of the window.

Strenghts: a beautiful metaphor for taking care (and letting go) of an aging parent.


-  Where I End - Sophie White

Genre: horror

Representation: caring for a bedbound parent due to unnamed illness

One line synopsis: On an isolated island off the Irish coast lives an equally isolated family of three in a dilapidated house held together by wood rot and grime. Here lives 20-year old Aoileann spends her days as the full-time caretaker for her bedbound mother. When a new young mother, similar in age to Aoileann arrives on the isle with her infant son, she quickly develops an obsession with her that takes a turn for the dark.

Strenghts: genuinely horrific depiction of the worst sides of caregiving, in this case combined with a deeply fraud relationship between the protagonists to start with. I appreciate it for showing a side to caregiving that is ugly, but equally real: the moments of grief, guilt, resentment, and feelings of emotional numbness and alienation that can result from it.

Weaknesses: the disabled character in question is portrayed as a burden to the protagonist, and often even less-than-human in her own right. Although I feel there's power in showing this in the context of what lead these characters here, I don't recommend this book for people receiving care themselves, as this obviously isn't a message I want anyone to take to heart. If you pick this book up, be very aware that this is a horror novel that's aimed at showing how circumstance can bring out the worst in people, and isn't meant to be taken as advice or gospel.


Genre: contemporary 

Representation: acquired brain-damage, coma

One line synopsis: a portrait of an afluent father and his two daughters whom life has been turned upside down following a boating accident that left his wife in a coma, set against the contrasting backdrop of sunny Hawaiian life.

Strengths: although the book is good in its own right, but the movie with George Clooney is worth a watch as well.


-  Monstrilio - Gerardo Samona Cordova

Genre: magical realism

Representation: Unnamed terminal illness of a child

One line synopsis: Grieving mother Magos cuts out a piece of her deceased eleven-year-old son Santiago’s lung. Acting on fierce maternal instinct and the dubious logic of an old folktale, she nurtures the lung until it gains sentience, growing into the carnivorous little Monstrilio.

Strenghts: this one borders the line between grief-fiction and care-giving, as it largely takes place after the death of our protagonists son. Overall, the narrative still focusses largely on her caring for the little monster she brings back, even though this might not be the son she knew.

Weaknesses: although I enjoyed the start of this book, I didn't like the second half as much. Here, it begins to mix some of its magical realist metaphors (specifically disability/illness with queerness and mental health), to the point where it accidentally does some problematic stuff towards them all.


Genre: magical realism 

Representation: fictional/metaphorical depiction of a child with possibly developmental- and bodily differences.

Weaknesses: although I appreciated parts of this novel personally, I don't feel comfortable representing it as a representation of “illness” or physical differences. There's a strong focus on the portrayal of Chouette as "animal-like", which is obviously a problem as a metaphor for a child with physical differences, intellectual disability or neurodivergence, as many have interpreted it. Depending on your interpretation of what Chouettes "differences" might represent, this will work for you or it won't. Personally, I don't think the disability-interpretation does it any favours.


Genre: contemporary

Representation: substance-abuse and mental illness (mother of protagonist)

One line synopsis: a 12-year old girl lives alone with her mother—a docker at the local container port—in subsidized housing next to an airport in Seattle. Every day after school, she visits the local aquarium, while she waits for her mum to pick her up. As the waits become longer and longer and she spents more time among the fishtanks, she strikes up an unexpected friendship with an old man, who shares her love of fish.

Strenghts: one of the best portrayals of parentification as a result of having to care for a parent at a far too young age.

Weaknesses: very bleak, as we know from David Vann, so don't pick this one up if you're in the market for a good pick-me-up-book.

 

Children's and Middle-grade Fiction


Genre: magical realism

Representation: terminal cancer (mother of protagonist)

One-line synopsis: A young boy finds an unexpected partner in dealing with his grief over his mothers terminal illness within a monster that appears at night outside his window.


Genre: magical realism

Representation: Alzheimers disease (grandpa of protagonist)

One-line synopsis: a young girl becomes fascinated by the magical stories told by her aging grandfather, as her family moves in with him over the summer to help out with his progressive dementia.

Strengths: readable and accessible for younger readers (age 8+)


Genre: fantasy

Representation: parent with terminal illness

One-line synopsis: 12-year old Hannah lives a peaceful life with her two fathers on a small isolated island, tending to the gardens there. Everything changes when one of her dads falls seriously ill. When Henna learns of the existence of a legendary, near-extinct plant with miraculous healing powers, she sets of on a quest to the main-island to join the Academy of Botany located there, in the hopes of bringing back this plant for her dad. 


Genre: novel in verse

Representation: parent with motor neuron disease.

One-line synopsis: two seventh graders develop a friendship over a shared goal of running the local Half Moon Bay’s half-marathon, each with their own motivations for wanting to do so.


- Julia and the Shark - Kiran Millwood Hargrave

Genre: contemporary, illustrated

Representation: bipolar disorder (mother of protagonist)

One-line synopsis: Julia has followed her mum and dad to live on a remote island for the summer – her dad, for work; her mother, on a determined mission to find the elusive Greenland shark. But when her mother’s obsession threatens to submerge them all, Julia finds herself on an adventure with dark depths and a lighthouse full of hope…

Strengths: stunning illustrations by Tom de Felton (the author's husband), make this extra accessible and add to the experience.


 

Young-Adult Fiction


- Bridge of Clay – Markus Zusak Genre: contemporary

Representation: cancer (mother of protagonist)

One-line synopsis: a family of boys threatens to break apart after the death of their mother due to cancer.

Strengths:


Genre: contemporary

Representation: Huntington’s Disease (father of protagonist)

One-line synopsis: an 18-year old girl navigates milenial anxiety, love, changing future perspectives and grief over her dads diagnosis of Huntingtons Disease.

Strenghts: captures the feeling of being "split" between genuinely wanting to take care of your parent, whilst also building your own life that so many teenage caretakers may have felt at some point or another. It also beautifully shows our protagonist managing to do both, even if that isn't always easy.


- We Speak in Storms – Natalie Lund Genre: magical realism Representation: terminal cancer (mother of one of the protagonists) One-line synopsis: a small town is haunted by the aftermaths of a tornado that shattered and took the lives of multiple families back in the seventies. When new tornado-warnings appear, the heavy winds bring with them ghostly presences from days past. Three teens find companionship, support and recognition in the stories from those that came before them.

Strenghts: one of the most harrowing YA-depictions of (anticipatory) grief and caregiving from a teens perspective I've read. It doesn't flinch away from showing both the moments of beauty and deep darkness that come with it.

Trigger Warnings: loss of parent, eating disorders, homophobic slurs (called-out on page)


 

Non-Fiction and Memoirs


Genre: memoir

Representation: Cortico-Basal Degeneration (partner of author)


Genre: memoir combined with academic essays on archeology

Representation: undiagnosed terminal neurodegenerative illness (partner of author)




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