Life In The Balance: A Physician’s Memoir of Life, Love and Loss with Parkinson’s and Dementia by Thomas Graboys MD
This book is a story direct from someone who is diagnosed with LBD. Tom’s drive to write a book about what it’s like being the one diagnosed is very unique. Couple that with his knowledge as a physician, it makes this a powerful read.
Dancing in Small Spaces; One Couples Journey with Parkinson’s and Lewy Body Dementia
They were like us. Adventurers, outdoor lovers, active, young at heart. Then they were each plagued with Parkinson’s and Lewy Body Dementia. Angst over how to care for self and the other rises to a whole new level. Powerful read for anyone who finds these diseases in their family or circle of friends. This book gives a clear glimpse of the struggles and challenges of these diseases.
Loving Someone Who Has Dementia by Pauline Boss, Phd
In the midst of reading, digesting this book. The book isn’t about things to do. God knows I don’t need to be told I need to do more things. It steps back a bit and works on concepts that aren’t spoken about by medical professionals who dispense prescriptions to the diagnosed. It clearly acknowledges that the caregiver suffers also, but very differently. Statistics show how care giving can be dangerous to the caregiver’s health. I am reading and pondering things that may become tools to help me take care of me as we journey through this together.
Stand By Me; A guide to Navigating Modern, Meaningful Caregiving by Allison J Applebaum, Phd
This book has been great to take in bit sized pieces. The index has chapters you can just lean into, or the book reads well from cover to cover. I really appreciated the first chapter which discusses the role of a caregiver as a story teller, letting those, especially professionals know, who your loved one was before they were impacted by this disease. I a beautiful memory I have is my friend Lori when caring for her father’s companion Fran. She had a different type of disease than Matt, one that caused her to become very different than the sweet, gentle person she used to be. So when Fran moved to a care facility, Lori lovingly put pictures of all kinds of life memories where Fran was smiling, enjoying life. This chapter is a good reminder as to how important storytelling, through various means, is to care for a loved one in the midst of all this.
…….
Uncle Lewy 