October 12, 2015

Before I Forget -

Before I Forget: How I Survived a Diagnosis of Younger-Onset Dementia at 46

Some days all I want to do is give up the constant, exhausting struggle and stop trying to be normal. But I can't. It's not in me to walk away from a fight. I'll keep fighting and telling my story. Before I forget.'

Christine Bryden was only 46 when she was diagnosed with dementia in 1995
Rather than accepting the passive role expected of a person with dementia, including Alzheimer’s, Christine wanted to become a survivor, and did not want to be labelled with dementia, as that implied that she was no longer a unique person, simply because one day, a specialist diagnosed her with an illness of cognition.
Christine has written four books about Alzheimers and Dementia. The title of her first book, Who will I be when I die expresses the fear she had about dementia which is supposed to rob you of your identity and personality.  Even in the early days, a diagnosis of dementia can result in social exclusion, making the person’s struggle so much worse, as they try to cope with the trauma of their fear of the future, as well as grief at ongoing loss. 
Christine is passionate about overcoming stigma, and creating a dementia-friendly society, in which people with dementia are given hope and encouragement, and are supported and included.  
Christine had a distinguished career, before she was diagnosed with dementia in 1995. At the time, as a recently divorced mother of three young girls, the news sent her into a tailspin, and was emotionally devastating. Yet she looked to the future with hope, and chose a positive outlook on life. So much so, that three years after her diagnosis, she met Paul Bryden, a former diplomat. Despite her prognosis, they fell in love and married; two super achievers, one embarking on an inevitable journey of decline. With his help, support and encouragement, Christine has been an active advocate for people with dementia.
Christine charts her decline in her books. Most dramatically, she faces the question, “Who am I?” as her memory and cognitive function fade. She talks about what it feels like, and what you can do to help, offering care-giver tips and insights to people with dementia and their carers. Hers is an emotional and spiritual journey of survival and hope, accompanied by Paul, a loving and supportive husband and enabler. She has a positive outlook on life, despite the challenges she faces each day . In her books, Christine talks frankly of her thoughts and feelings, as she looks at a new perspective on life through the lens of dementia.

Who will I be when I die?
Christine Bryden
This is the 2nd updated edition of the original Who will I be when I die? which was written in 1998.

'Who will I be when I die?' is the beginning of the story of Christine Bryden's  emotional, physical and spiritual journey since her diagnosis.  Christine is living positively with dementia, and provides a unique insight into how it feels to be gradually losing the ability to undertake tasks most of us take for granted. Her story is remarkable because of the vigour with which she is undertaking this battle in her life and her deep sense that her life continues to have purpose and meaning. Christine's approach to health and well-being has made this book a must for many people with dementia and their families.

Dancing with dementia : my story of living positively with dementia
Christine Bryden

This book is a vivid account of the author's experiences living with dementia, exploring the effects of memory problems, loss of independence, difficulties in communication and the exhaustion of coping with simple tasks. She describes how, with the support of her husband, Paul, she continues to lead an active life nevertheless, and explains how professionals and caregivers can help.

On Pluto
Greg O’Brien, an award-winning investigative reporter, has been diagnosed with early-onset Alzheimer's and is one of those faceless numbers. Acting on long-term memory and skill coupled with well-developed journalistic grit, O’Brien decided to tackle the disease and his imminent decline by writing frankly about the journey. O’Brien is a master storyteller. His story is naked, wrenching, and soul searching for a generation and their loved ones about to cross the threshold of this death in slow motion. On Pluto: Inside the Mind of Alzheimer’s is a trail-blazing roadmap for a generation—both a “how to” for fighting a disease, and a “how not” to give up!

These resources are available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@alzheimers.org.au

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