A Long Goodbye

Often the lessons to be learned from recipients of care are overshadowed by more formal learning strategies. Ed’s story is one of compassion, strength, laughter, loyalty and loss.  It chronicles the journey of caring for a loved one diagnosed with Dementia with Lewy Bodies.  Unfortunately, diagnosis of any form of dementia is more frequent in our communities than many of us are aware.  Very few people, however, journal their story as their lives, and that of those around them, change. Thus, the richness of learning from recipients of formal care and support is a unique opportunity for all health professionals working in dementia care. Further, the raw, honest insights in Ed’s story are a valuable learning tool for any health professional from any discipline, particularly those who are still learning their craft. Sometimes the impact our words and actions have on patients and families is not apparent, and Ed’s reflections allow us a glimpse into how the actions and words affect them, both positively and negatively.

This book, built around Ed’s journal, chronicles Ed’s experiences as a carer following his wife Mary’s diagnosis with Lewy body dementia.  Students and experienced health professionals are rarely afforded such an insight into how their words and actions are interpreted by, and impact upon patients, families and friends. Ed’s Story provides information and education resources related to dementia care.  Although specifically focusing on Lewy body dementia, the resources are transferable to caring for people with any type of dementia. The freely available resources are suitable for use by students in the health professions, educators, formal and informal carers.