February 13, 2018

14 titles on pastoral care and end stage dementia care - books DVDs eResources (to download immediately )

*these   are available to members of dementia Australia NSW by emailing NSW.Library@dementia.org.au

A good life to the end : taking control of our inevitable journey through ageing and death

Ken Hillman is a practising intensive care specialist who is a Professor of Intensive Care at the University of New South Wales. He trained at St Vincent's Hospital in Sydney and worked in London for 6 years before returning to Australia as Director of Intensive Care at Liverpool Hospital in Sydney. Professor Hillman is internationally recognised as a pioneer in the introduction of the Medical Emergency Team which recognises and responds to seriously ill hospital patients early in their deterioration, which has been adopted in the majority of hospitals in the United Kingdom, United States of America and several European countries. He is working closely with the Clinical Excellence Commission on rolling out the Medical Emergency Team to every hospital in New South Wales. He is also passionate advocate of improving the management of the dying patient in acute hospitals.

Living with death and dying

In this compassionate and moving guide to communicating with the terminally ill, Dr. Elisabeth Küebler-Ross, the world's foremost expert on death and dying, shares her tools for understanding how the dying convey their innermost knowledge and needs. Expanding on the workshops that have made her famous and loved around the world, she shows us the importance of meaningful dialogue in helping patients to die with peace and dignity.

Sydney Writers Festival: Author Atul Gawande speaks about his book
Being Mortal CD or Book and on eBook 

Gawande turns to his father a lot when talking about Being Mortal, his most personal example on his journey of understanding how we can support people in the ends of their lives.
"We have medicalised even the aging experience, we have made it so that the number one goal is your safety and health, and that's a very thin thing to live for, being safe… and it has caused us unexpected tremendous amount of suffering as people enter the last phases of their lives," he says.
For his father, the most important thing was that he be able to still have dinner and conversation with his family at least once a week, so he decided to undergo an invasive nine hour surgery as well as radiation for his tumour, but did not have chemotherapy. Others will have different priorities, and simply prolonging life until the bitter end may not be compatible with the type of life they want.

 Gawande offers examples of freer, more socially fulfilling models for assisting the infirm and dependent elderly, and he explores the varieties of hospice care to demonstrate that a person's last weeks or months may be rich and dignified. Full of eye-opening research and riveting storytelling, "Being Mortal" asserts that medicine can comfort and enhance our experience even to the end, providing not only a good life but also a good end.

When breath becomes air -  CD or book 

"For readers of Atul Gawande, a profoundly moving, exquisitely observed memoir by a young neurosurgeon faced with a terminal cancer diagnosis who attempts to answer the question What makes a life worth living? 
'" When Breath Becomes Air is an unforgettable, life-affirming reflection on the challenge of facing death and on the relationship between doctor and patient, from a brilliant writer who became both. ... heartbreaking, and ultimately beautiful, the too-young Dr. Kalanithi's memoir is proof that the dying are the ones who have the most to teach us about life."--Atul Gawande "Thanks to When Breath Becomes Air, those of us who never met Paul Kalanithi will both mourn his death and benefit from his life. This is one of a handful of books I consider to be a universal donor--I would recommend it to anyone, everyone."--Ann Patchett

The five invitations : discovering what death can teach us about living fully

The Five Invitations is an exhilarating meditation on the meaning of life and how maintaining an ever-present consciousness of death can bring us closer to our truest selves.

As a renowned teacher of compassionate caregiving and the cofounder of the Zen Hospice Project, Frank Ostaseski has sat on the precipice of death with more than a thousand people. In The Five Invitations, he distills the lessons gleaned over the course of his career, offering an evocative and stirring guide that points to a radical path to transformation.

The Five Invitations: 
-Don't Wait
-Welcome Everything, Push Away Nothing
-Bring Your Whole Self to the Experience
-Find a Place of Rest in the Middle of Things
-Cultivate Don't Know Mind

These Five Invitations show us how to wake up fully to our lives. They can be understood as best practices for anyone coping with loss or navigating any sort of transition or crisis; they guide us toward appreciating life's preciousness. Awareness of death can be a valuable companion on the road to living well, forging a rich and meaningful life, and letting go of regret. The Five Invitations is a powerful and inspiring exploration of the essential wisdom dying has to impart to all of us.

The needs of the dying : a guide for bringing hope, comfort, and love to life's final chapter 
by David Kessler
In gentle, compassionate language, The Needs of the Dying helps us through the last chapter of our lives. Author David Kessler has identified key areas of concern: the need to be treated as a living human being, the need for hope, the need to express emotions, the need to participate in care, the need for honesty, the need for spirituality, and the need to be free of physical pain. Examining the physical and emotional experiences of life-challenging illnesses, Kessler provides a vocabulary for family members and for the dying that allows them to communicate with doctors, with hospital staff, and with one another, and-at a time when the right words are exceedingly difficult to find-he helps readers find a way to say good-bye. 

Being with dying : cultivating compassion and fearlessness in the presence of death 
by Joan Halifax
Zen teacher Joan Halifax has been helping both the dying and their caregivers to face death with courage and compassion for three decades. Here, Joan offers the fruits of her work, providing comfort, inspiration, and practical skills for all those who are in the process of dying or who are charged with a dying person's care. Her teaching, based on Buddhist principles, emphasizes that we have the ability to open up to and rely on our inner strength, and we can help others who are suffering to do the same. Joan offers stories from her personal experience as well as guided exercises and contemplation to help readers meditate on death without fear, develop a commitment to helping others, and transform suffering and resistance into courage.

End of life care & letting go ..
* I just watched it – it’s pretty amazing J
- about indicators that the disease has progressed into its final stages and how to provide the most effective comfort care
- how to communicate when there are no words through visual, auditory, and physical signals of connection especially regarding pain!
- about physical changes and the importance of primitive reflexes eg. Swallowing/ feeding  and changes in vision and agitation 
- techniques for a consistent positive physical approach
- about different care approaches, from health promotion to compensatory care
- about giving the person with dementia permission to pass without giving up on them (Letting Go vs. Giving Up)

Advanced Care Skills in Late Stage Dementia

Whether you work in a skilled or hospice care setting, this program is a must-see for anyone who seeks to provide the most comfort, dignity and quality of life to the person living with dementia. 

This program offers step-by-step instructions and hands-on skills for a variety of late stage care needs, all based on Positive ApproachTM techniques to help care partners handle even the trickiest of care tasks and reduce their risk of injury.
• How to calmly get a person out of bed while protecting your back
• How to safely transfer a person from bed to wheelchair
• How to best transfer a person from bed to wheelchair using a SARA lift
• How to bathe and dress a person in bed while protecting their dignity
• How to assist with eating and drinking using the most compassionate care techniques

The end-of-life namaste care program for people with dementia 

The innovative Namaste Care program helps facilities provide gentle end-of-life care, especially for residents with advanced dementia. 

Because of their profound losses, these individuals are often isolated with limited human contact during the final stages of their lives. 

This new program reveals simple and practical ways for direct care staff to provide holistic, person-centered care and maintain a human connection.

 Blending nursing care and meaningful activities, the program promotes peaceful and relaxing end-of-life experiences for older adults. Sensory-based practices, like placement in comfortable armchairs, soothing music, and gentle massage, emphasize comfort and pleasure. Personal information is used to individualize the experiences, making them as enjoyable as possible for participants. 

 Step-by-step advice for staffing, budgeting, and marketing a program is included. Detailed information for creating a Namaste Care room is provided, as well as alternative options for facilities with limited space. Plus, real-life vignettes illustrate the program in practice. 

This essential guide for carers, be they professional or friends and relations, provides guidance around a range of concerns associated with end of life. The book tackles this difficult subject in a practical and caring way, showing how appropriate arrangements can be made to ensure the dying person's wishes about death and post-death are carried out. From the practical point of view, the book covers making a Will, making an Advance Directive, donating body tissues and organs, and giving directions for one's own funeral or life celebration. From an emotional point of view the book discusses grief, including anticipatory grief, coping with grief and the importance of grieving.

  • End of Life Care for People with Dementia - eBook
    People with dementia need increasingly specialised support as they approach the end of life, and so too do their families and the professionals who work with them. This book describes not only what can be done to ensure quality of life for those with the illness, but also how best to support those who care for them throughout this difficult period.

  • A Guide to the Spiritual Dimension of Care for People with Alzheimer's Disease and Related Dementia - eBook
    'This is a book for those actively engaged in or interested in spiritual ministry to persons with dementia.... this book very personal in its approach. ... the anecdotes anchor the book in the realm of what can be done rather than the theoretical world of the "maybes". 
  • The main concepts of the book, those of spirituality, retained through dementia, and personal worth should be acceptable to people of most world faiths.'- Leveson Newsletter'
  • This is an important book that has much to offer at a variety of different levels. It ranges from deep philosophical thinking to practical recommendations... a book that should be bought, digested and used frequently.'- Christian Council on Ageing'Contains valuable material.
  •  The passages that attempt a definition of spirituality, and the stories about persons with dementia and how they have been helped to greater well-being, are relevant and excellently done. 
  • The spirit of Eileen Shamy shines out from these pages and carries its own message of passionate concern. One of the book's greatest strengths is its stories, which are unfailingly well-told and apposite.'- Ageing and Society 
  • - care which involves understanding of their spiritual as well as physical needs.This sensitive and informative book provides guidelines for pastoral visits to people with dementia, showing how to empathise with, understand and support individuals during a visit. Emphasising the importance of retaining dignity and freedom of choice for people with dementia, it also presents practical advice about memory cueing and provides frameworks for leading worship for those with dementia.A useful resource for a variety of people involved in pastoral care with older people, whether professionals or volunteers, this book provides inspiration from a respected author in the field of psychogeriatric care. 

No comments: