Relationships and dementia

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People  interact and engage with others on a daily basis whether they are family, friends, work colleagues, or even strangers.  We are social beings.

Our intimate and family relationships are complex. Living with dementia increases this complexity, so relationships need to be reframed and constantly renegotiated as the dementia progresses. (Relationships and dementia, 2017)

This blog looks at a variety of resources that illustrate the complexity of these relationships.

relationshipsandementia.JPGRelationships and dementia – Alzheimer’s Australia NSW Discussion Paper Number 19 (June 2017)
This discussion paper concludes that society needs to recognise, acknowledge and understand that people living with dementia, their carers and families face relationship difficulties and challenges, and more support is needed to enable people to work through complex feelings of grief and loss.
Download resource

Friends_matterFamily and friends matter : how to stay connected to a person living with dementia – Alzheimer’s Australia (2015)
The Family and Friends Matter booklet reinforces the importance of family, friendship and social connection for people with dementia and provides strategies and ideas to help an individual engage and maintain their relationship with a family member or friend who has developed dementia.
Download resource

loving-someone-who-has-dementiaLoving someone who has dementia : how to find hope while coping with stress and grief  /  Pauline Boss  (c2011)
This book is intended for partners, family members, friends, neighbours and caregivers of a person living with dementia.
The author discusses the meaning of relationships and offers approaches in a conversational style, suggesting ways to embrace rather than resist the ambiguity of a relationship with someone who has dementia.

 

Memoirs

bettyvilleBettyville : a memoir  /  George Hodgman  (2015)

A witty, tender memoir of a son’s journey home to care for his irascible mother–a tale of secrets, silences, and enduring love. When George Hodgman leaves Manhattan for his hometown of Paris, Missouri, he finds himself–an unlikely caretaker and near-lethal cook–in a head-on collision with his aging mother, Betty, a woman of wit and will.

 

alzheimersLoveStoryAlzheimer’s: a love story  /  Ulman, Vivienne  (2009)
The author records with tender lyricism and searing honesty the progress of her mother’s Alzheimer’s, her own grief and the way in which her parents’ enduring love for each other sustains them.

 

green vanilla teaGreen vanilla tea  /  Marie Williams  (2013)
In a compelling story that spans both joy and sadness, Marie Williams writes about the bonds in her family, her sons’ love for their father, the spirit that sustains them all during the most testing of experiences and about the struggle they faced in dealing with the inexplicable.

 

ToLoveWhatIsTo love what is : a marriage transformed  /  Shulman, Alix Kates  (2008)
In this elegant memoir, Shulman describes the ongoing anxieties and risks–and surprising rewards–she experiences with her husband and discovers that what might have seemed a life sentence to some has evolved into something unexpectedly rich.

 

Fiction

goodbye vitaminGoodbye, vitamin  /  Rachel Khong.  (2017)

Ruth is thirty and her life is falling apart: she and her fiancé are moving house, but he’s moving out to live with another woman; her career is going nowhere; and then she learns that her father, a history professor beloved by his students, has Alzheimer’s. Goodbye, Vitamin is the wry, beautifully observed story of a woman at a crossroads, as Ruth and her friends attempt to shore up her father’s career; she and her mother obsess over the ambiguous health benefits – in the absence of a cure – of dried jellyfish supplements and vitamin pills; and they all try to forge a new relationship with the brilliant, childlike, irascible man her father has become.

the-woman-next-doorThe woman next door  /  Liz Byrski  (2016)

Over the years, the residents of Emerald Street have become more than just neighbours, they have built lasting friendships over a drink and chat on their back verandahs. This is a tale  of a group of friends and their reactions to growing older.

 

the-things-we-keepThe things we keep  /  Sally Hepworth.  (2016)
Anna Forster, in the early stages of Alzheimer’s disease at only thirty-eight years old, knows that her family is doing what they believe to be best when they take her to Rosalind House, an assisted living facility. She also knows there’s just one other resident her age, Luke. What she does not expect is the love that blossoms between her and Luke even as she resists her new life at Rosalind House. As her disease steals more and more of her memory, Anna fights to hold on to what she knows, including her relationship with Luke.

memory bookThe memory book  /  by Rowan Coleman  (2014)

A gorgeous husband, two beautiful children, a job she loves—Claire’s got it all. And then some. But lately, her mother hovers more than a helicopter, her husband Greg seems like a stranger, and her two children are like characters in a movie. Things are changing.

 

Film

Iris DVD coverIris  /  Bayley, John  (2001)

Based on the book Elegy for Iris by John Bayley, this movie tells the true story of English novelist Iris Murdoch’s progression of Alzheimer’s disease and the enduring relationship with  Bayley, her partner of 40 years.
View trailer

gen silent DVD

Gen silent : a documentary film about LGBT aging  /  written and directed by Stu Maddux.  (2011)
Many who won the first  civil rights victories for generations to come are now aging and may be  reluctant to ask for help.
Filmed in the Boston area over a one-year period, director Stu Maddux followed six LGBT seniors through their decision to either stay open about their sexuality or hide it to survive in the long-term health care system.
View Trailer

Still mine  (2012still mine)
Still Mine is ultimately a story about a relationship between husband and wife and their staunch determination to remain together and care for one another. At times, this means other family members are excluded and disregarded. Yet no one doubts their devotion to one another. It is a story of empowerment and acceptance in very stressful circumstances. Whilst their situation bends them, it does not break them and Still Mine is, among other things, a story of triumph.
View trailer

Remember: All titles are available for loan through the Alzheimer’s Australia Vic library and may also be available via your local public library service.

Recent fiction with people with dementia

2017 Update

As you may know, it can feel like it’s entirely possible to read about dementia all day, every day and still only cover a fraction of the resources available.  At the Alzheimer’s Australia Vic library we’ve found that many people enjoy learning more about dementia in a fictional setting.  Fortunately, there are some amazing stories which provide both a gripping read and valuable information on how dementia can impact and change both the person with dementia and those around them.

This post covers books released over the last two years – 2014 and 2015. Links to previous posts about fictional accounts of dementia are also included at the conclusion of this post.  We hope that some of these resources are also available through your local library. If not, you can contact us or perhaps put in a request for these via your local library.

spool of blue threadA Spool of Blue Thread by Anne Tyler, 2015

“It was a beautiful, breezy, yellow-and-green afternoon…” This is how Abby Whitshank always begins the story of how she fell in love with Red that day in July 1959. The Whitshanks are one of those families that radiate togetherness: an indefinable, enviable kind of specialness. But they are also like all families, in that the stories they tell themselves reveal only part of the picture. Abby and Red and their four grown children have accumulated not only tender moments, laughter, and celebrations, but also jealousies, disappointments, and carefully guarded secrets. From Red’s father and mother, newly arrived in Baltimore in the 1920s, to Abby and Red’s grandchildren carrying the family legacy boisterously into the twenty-first century, here are four generations of Whitshanks, their lives unfolding in and around the sprawling, lovingly worn Baltimore house that has always been their achor.

Brimming with all the insight, humor, and generosity of spirit that are the hallmarks of Anne Tyler’s work, A Spool of Blue Thread tells a poignant yet unsentimental story in praise of family in all its emotional complexity. It is a novel to cherish.

we are not ourselvesWe are not ourselves by Matthew Thomas, 2014

This novel is light on racy subplots and heavy on the messy, claustrophobic fog of family life. It is by turns wrenching in its portrait of a family battling illness and plodding in its depiction of the sociological realities of mid-century middle-class American life. At its centre is Eileen Tumulty, who grows up in a working-class Irish enclave of Queens, New York. When she meets her husband, Ed, a young neuroscientist, she believes she is finally climbing the ladder into the respectable upper-middle-class. But then in midlife, just as the couple’s son is entering his teens, Ed is diagnosed with young onset Alzheimer’s disease.

Note: this is also available as an audiobook from our library.

memory bookThe memory book  by Rowan Coleman, 2014

The name of your first-born. The face of your lover. Your age. Your address…

What would happen if your memory of these began to fade?

Is it possible to rebuild your life? Raise a family? Fall in love again?

When time is running out, every moment is precious…

When Claire starts to write her Memory Book, she already knows that this scrapbook of mementoes will soon be all her daughters and husband have of her. But how can she hold onto the past when her future is slipping through her fingers…?

A Sunday Times bestseller and Richard & Judy Autumn Book Club pick, The Memory Book is a critically acclaimed, beautiful novel of mothers and daughters, and what we will do for love.

This is a story about younger onset dementia.

Note: this is also available as an audiobook from our library.

arsonistThe Arsonist by Sue Miller, 2014

From the best-selling author of While I Was Gone and The Senator’s Wife, a superb new novel about a family and a community tested when an arsonist begins setting fire to the homes of the summer people in a small New England town.

Troubled by the feeling that she belongs nowhere after working in East Africa for 15 years, Frankie Rowley has come home-home to the small New Hampshire town of Pomeroy and the farmhouse where her family has always summered. On her first night back, a house up the road burns to the ground. Is it an accident, or arson? Over the weeks that follow, as Frankie comes to recognize her father’s slow failing and her mother’s desperation, another house burns, and then another, always the homes of summer people. These frightening events, and the deep social fault lines that open in the town as a result, are observed and reported on by Bud Jacobs, a former political journalist, who has bought the local paper and moved to Pomeroy in an attempt to find a kind of home himself. As this compelling book unfolds, as Bud and Frankie begin an unexpected, passionate affair, arson upends a trusting small community where people have never before bothered to lock their doors; and Frankie and Bud bring wholly different perspectives to the questions of who truly owns the land, who belongs in the town, and how, or even whether, newcomers can make a real home there.

Eliz_Is_MissingElizabeth Is Missing: A Novel by Emma Healey, 2014

In this darkly riveting debut novel—a sophisticated psychological mystery that is also an heartbreakingly honest meditation on memory, identity, and aging—an elderly woman descending into dementia embarks on a desperate quest to find the best friend she believes has disappeared, and her search for the truth will go back decades and have shattering consequences.

Maud, an aging grandmother, is slowly losing her memory—and her grip on everyday life. Yet she refuses to forget her best friend Elizabeth, whom she is convinced is missing and in terrible danger.

But no one will listen to Maud—not her frustrated daughter, Helen, not her caretakers, not the police, and especially not Elizabeth’s mercurial son, Peter. Armed with handwritten notes she leaves for herself and an overwhelming feeling that Elizabeth needs her help, Maud resolves to discover the truth and save her beloved friend.

This singular obsession forms a cornerstone of Maud’s rapidly dissolving present. But the clues she discovers seem only to lead her deeper into her past, to another unsolved disappearance: her sister, Sukey, who vanished shortly after World War II.

As vivid memories of a tragedy that occurred more fifty years ago come flooding back, Maud discovers new momentum in her search for her friend. Could the mystery of Sukey’s disappearance hold the key to finding Elizabeth?

Note: this is also available as an audiobook from our library.

Stars Go BlueStars go blue : a novel by Laura Pritchett, 2014

We first met hardscrabble ranchers Renny and Ben Cross in Laura’s debut collection, and now in Stars Go Blue, they are estranged, elderly spouses living on opposite ends of their sprawling ranch, faced with the particular decline of a fading farm and Ben’s struggle with Alzheimer’s disease. He is just on the cusp of dementia, able to recognize he is sick but unable to do anything about it -the notes he leaves in his pockets and around the house to remind him of himself, his family, and his responsibilities are no longer as helpful as they used to be. Watching his estranged wife forced into care-taking and brought to her breaking point, Ben decides to leave his life with whatever dignity and grace remains.

As Ben makes his decision, a new horrible truth comes to light: Ray, the abusive husband of their late daughter is being released from prison early. This opens old wounds in Ben, his wife, his surviving daughter, and four grandchildren. Branded with a need for justice, Ben must act before his mind leaves him, and sets off during a brutal snowstorm to confront the man who murdered his daughter. Renny, realizing he is missing, sets off to either stop or witness her husband’s act of vengeance.

missing stepsMissing Steps by Paul Cavanagh, 2015

Dean Lajeunesse doesn’t want to follow in his father’s footsteps. He’s not yet fifty, but his memory is starting to fail him. He vividly recalls how dementia whittled away at his dad and doesn’t want his own teenaged son, Aidan, to see him suffer the same fate. Of course, he could just be overreacting. Maybe it’s the stress of his on-again, off-again relationship with Valerie, his long-time live-in girlfriend, or the feeling that he’s not measuring up as a father that’s making him absent-minded. But before he can understand what’s happening to him, he’s dragged home to the sickbed of his estranged mother. There, he butts heads with his older brother, Perry, who’s remained loyal to their mother and has succeeded in almost every way that Dean hasn’t. As old family tensions bubble to the surface, Dean must try to hold on to Aidan’s respect as he relives his difficult relationship with his own father.

unbecomingUnbecoming by Jenny Downham, 2015

Three women – three secrets – one heart-stopping story. Katie, seventeen, in love with someone whose identity she can’t reveal. Her mother Caroline, uptight, worn out and about to find the past catching up with her. Katie’s grandmother, Mary, back with the family after years of mysterious absence and ‘capable of anything’, despite living with Alzheimer’s disease. As Katie cares for an elderly woman who brings daily chaos to her life, she finds herself drawn to her.

This is a book that will be enjoyed by young adults and adults alike.

Half a ChanceHalf a Chance by Cynthia Lord, 2014

For late primary or early secondary school-aged readers.

When Lucy’s family moves to an old house on a lake, Lucy tries to see her new home through her camera’s lens, as her father has taught her — he’s a famous photographer, away on a shoot. Will her photos ever meet his high standards? When she discovers that he’s judging a photo contest, Lucy decides to enter anonymously. She wants to find out if her eye for photography is really special — or only good enough. As she seeks out subjects for her photos, Lucy gets to know Nate, the boy next door. But slowly the camera reveals what Nate doesn’t want to see: his grandmother’s memory is slipping away, and with it much of what he cherishes about his summers on the lake. This summer, Nate will learn about the power of art to show truth. And Lucy will learn how beauty can change lives . . . including her own.

GrandmaGrandma by Jessica Shepherd, 2014

Oscar loves Grandma, and their time together is always lots of fun. As she becomes less able to look after herself, she has to go into a care home. More and more children are encountering dementia and its effects on their families. This touching story, told in Oscar’s own words, is a positive and practical tale about the experience. The factual page about dementia helps children talk about their feelings and find new ways to enjoy the changing relationship. Jessica Shepherd’s sensitive first picture book has grown out of her experiences in a variety of caring roles. This book includes many wonderful illustrations, including a childlike map of a residential care facility.

Fictional accounts of dementia – Post 1

Fictional accounts of dementia – Post 2

Kids and teens resources