What About Me … provides an insight into the challenges of caring for a person with a disability. It is a practical approach that enables parents, siblings and other people to better manage the demands of providing lifelong care. Personal and family struggles need to become manageable before parents can cope effectively with their family circumstances.
When struggles are manageable, parents can focus on reducing the strain coming from caring for a person with a disability. This support is described in the Guide as FamilyCare. It may take many years and perhaps some heartache to arrange, but in the end parents and siblings who determine to make these changes will reach peace of mind.
For many parents, providing lifelong care can be a tough, demanding and stressful time. They can face the likelihood of family dysfunction or breakdown unless they make effective changes. Their challenge is to manage the stressful demands of providing lifelong care as well as living a family and working life.
The Guide has been written from a parent’s perspective of providing lifelong care for a family member with a disability. The Guide is practical, thought-provoking, and in some parts confronting. It offers considerations and suggestions in the hope that other families may benefit from the hard-won experiences of parents and siblings in similar circumstances. The Guide may shake or challenge some parents. For others, it will encourage them to take steps towards improving their circumstances.
Each chapter of the Guide has an introductory panel containing:
• At a glance: provides a point form summary of the major considerations of the chapter.
• Lessons learned: a summary of the main findings from the narrative and body of the text.
• Key terms and words: an explanation of their meaning in the context of the Guide.
• A narrative: the narratives are based on the experiences of parents and siblings involved with providing care. It is a story of everyday events that provides insight into day-to-day challenges and long-term considerations.
FamilyCare is an approach that will enable parents to better manage the needs of a family member with a disability and their entire family. Parents need to increase their understanding of the likely challenges and develop specific strategies that will address their family member’s needs in relation to a range of factors includng the nature of the individual person, power and control, inclusion, value, good care and role models. FamilyCare seeks to provide lifelong care by addressing present and future needs. The approach enables ageing parents to come to share their caring role with other people, confident that loving care of their family member will continue.
About the Authors
Terry Ryan is the father of Chris, who has an intellectual disability. He also has two daughters and two granddaughters. His family and other families have provided insights into how parents find their way through the demands of managing a family member’s disability, providing lifelong care and overcoming personal and family struggles.
Terry has been President of ACTION for People with Disability Incorporated, Chairperson of Manly-Warringah Family and Friends of People with Disability and involved with parent advocacy for many years. Terry was educated at the University of NSW, Australia, and employed in technical and management positions during his career as a surveyor, manager and lecturer. He now spends his time offering workshops for parents.
Chris Ryan has mentored many people. He has touched their lives in a quiet and gentle way. Like a teacher, he encourages his pupils to appreciate the things that really matter. Through his life experience and inspiration, he provides an insightful perspective of vulnerabilty, sincerity and humility. Chris has authored this Guide by sharing his life story, a story that articulates a clear understanding of the nature of lifelong care. He reminds us that all of us need to be loved and nurtured, and that with the right support people with a disability can live their lives as part of a community.