Relationships and dementia

relationshipsanddementia.JPG

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.

Must-reads for carers and families of people with dementia

This is a library ‘fantasy’ list. If you were to walk into our lovely little library – and we would LOVE you to do just that! –  and commend yourself into our hands, this is what would we would send you home with. We know these books are of genuine use to those caring for people with dementia, please have a browse of the list and let us know if there are any you would like to borrow. Many are also likely to be offered through your local public library service as well.

First person accounts

First-person accounts from people with dementia are a really valuable insight into the experience of those living with dementia. Can they be heart-wrenching to read? Oh yes. Is it ridiculously brave to document your own experience of living with dementia whilst living with dementia? Unarguably so. Is it illuminating to understand, from a first-person perspective, the very personal and life-changing impacts? My goodness, gracious yes! Whenever I read first-person works I am the richer for it. It allows you to experience the world from another perspective, and as a result understand in a unique way what it might be like for someone with dementia and how I might be able to better help them.

Now, enough from me! Here’s a bit about the books.

Alzheimer’s from the inside out, Richard Taylor

alzheimers_from_the_inside_out_webReceiving a diagnosis of Alzheimer’s disease profoundly alters lives and creates endless uncertainty about the future. How does a person cope with such a life-changing discovery? What are the hopes and fears of someone living with this disease? How does he want to be treated? How does he feel as the disease alters his brain, his relationships, and ultimately himself? Taylor provides illuminating responses to these and many other questions in this collection of provocative essays. Diagnosed with Alzheimer’s disease at age 61, the former psychologist courageously shares an account of his slow transformation and deterioration and the growing division between his world and the world of others.

With poignant clarity, candor, and even occasional humor, more than 80 brief essays address difficult issues faced by those with Alzheimer’s disease, including the loss of independence and personhood unwanted personality shifts communication difficulties changes in relationships with loved ones and friends the declining ability to perform familiar tasks. Individuals with early-stage Alzheimer’s disease will take comfort in the voice of a fellow traveler experiencing similar challenges, frustrations, and triumphs. Family and professional caregivers will be enlightened by Taylor’s revealing words, gaining a better understanding of an unfathomable world and how best to care for someone living in it.

Richard Taylor has Younger Onset Dementia.

Who will I be when I die? Christine Boden

who_will_i_be_when_i_die_webFor many, Alzheimer’s is a mystery disease affecting old people. Christine Boden was 46 when she was diagnosed with Alzheimer’s and Who Will I Be When I Die?, is the story of her emotional, physical and spiritual journey in the three years since then.

Christine is living with the stages of Alzheimer’s and provides a unique insight into how it feels to be gradually losing ability to undertake tasks most of us take for granted. Her story is remarkable because of the vigor with which she is undertaking this latest battle in her life and the purpose and meaning she derives from her Christian spirituality. Christine’s approach to health and well-being makes this book a must for Alzheimer’s sufferers and their families.

For Christine, Alzheimer’s disease with all the changes it brings, is part of her on-going journey.

Christine Boden has Younger Onset Dementia.

Carer accounts

For many of us, the care of family is taxing enough, without even considering the all-consuming demands of caring for a person with dementia. Particularly if that person also happens to be a much-loved parent or partner. Carers accounts offer us the opportunity to plunge into the astounding physical and emotional demands of looking out for a person with dementia. These are not always easy and/or comfortable reads but their raw honesty and often unflinching assessment of their successes and failures makes for very compelling and wonderfully human stories.

Here’s a few of our favourites:

Alzheimer’s: a love story, Vivienne Ulman

alzheimersLoveStoryWhen Vivienne Ulman’s youngest child left home, she and her husband were poised to enjoy their freedom. Then her mother’s Alzheimer’s intervened. In Alzheimer’s: a love story, Vivienne records with tender lyricism and searing honesty the progress of her mother’s Alzheimer’s, her own grief over the gradual loss of her beloved mother, and the way in which her parents’ enduring love for each other sustains them. Into this she weaves an account of her family’s history, in particular her father’s rise from farm boy to confidant of prime ministers – achievements made possible by the loving strength of the woman by his side. In a reversal of roles, he now amply returns this support. This inspiring Australian story is a tale for the sandwich generation, squeezed on one side by concerns for their children and on the other by anxiety about their parents. It is about illness, grief, and hardship, but it is also about love, determination, and joy.

Hazel’s Journey, Sue Pieters-Hawke

hazel's_journey_webIn November 2003, Hazel Hawke revealed that she was facing her greatest challenge – Alzheimer’s disease. Her courage and determination in the face of this cruel turn of fate touched millions. Now comes the full, inside story of Hazel’s journey with Alzheimer’s, told by her daughter Sue.

This is an intensely moving and personal story of an intelligent, independent woman struggling with the disease that is affecting an ever increasing number of Australians. From early denial to the awful anger that came after diagnosis and the acceptance that has developed since, Hazel’s Journey tell’s Hazel’s story – and shows what life is like for the hundreds of thousands of carers who are committed to helping their loved ones retain quality of life and to coping with the disease’s implacable progress. Inspiring, revealing and insightful, this is a journey you will never forget.

Losing Clive to younger onset dementia : One family’s story, Helen Beaumont

Losing CliveClive Beaumont was diagnosed with Younger Onset Dementia at age 45, when his children were aged just 3 and 4. He had become less and less able to do his job properly and had been made redundant from the Army the year before.
Clive’s wife, Helen, tells of how she and the rest of the family made it through the next six years until Clive died: the challenge of continually adapting to his progressive deterioration; having to address the legal implications of the illness; applying for benefit payments; finding nursing homes; and juggling her responsibilities as a wife, a mother and an employee. She also describes the successful founding and development of The Clive Project, a registered charity set up by Helen and others in a bid to establish support services for people with Younger Onset Dementia.
Younger Onset Dementia is comparatively rare, but not that rare. This story is for the family and friends of people with the condition, for the people themselves, and for the professionals working with them.

Guides to caring

Imagine if there was a way to have 24-7 access to a source of information and advice on caring for someone with dementia?  These could be it, we know they have been very useful on a practical level for many of our library patrons.

The 36-hour day, Nancy Mace and Peter Rabins

36hrdayThe 36-hour day is the definitive guide for people caring for someone with dementia. The new and updated edition of this best-selling book features thoroughly revised information on the causes of dementia, managing the early stages of dementia, the prevention of dementia, and finding appropriate living arrangements for the person who has dementia when home care is no longer an option.

Understanding difficult behaviors, Anne Robinson

The detailed information on environmental, physical, and emotional influences is very beneficial to both family and professional caregivers striving to make improvements that may avoid difficult behaviors. Practical coping strategies for responding to challenging situations such as agitation, wandering, incontinence and resistance to care are also offered. These practical strategies for making changes based on possible causes and guidance to problem-solve helps to avoid the behavior and address it when it occurs.

Activities for people with dementia

montessori_activities_vol2_blogMontessori based activities for persons with dementia: Volume 1 & 2, Cameron J. Camp (ed)

These books include intergenerational programming, group activities, ideas especially for men, and sensory stimulation exercises. Also, range-of-motion and self-care activities for enhancing restorative nursing and rehabilitation are described.

we_can_we_can_we_can_webWe can, we can, we can: purpose and pleasure for people living with dementia

Activity must meet our need for meaning and connection, as well as providing an outlet for creativity, spirituality, job, fun, and relaxation. Every one of us has leisure and recreation preferences. This collection of activities respects that diversity, as well as the need for a person-centred approach to activities.