Finding Meaning with Charles: Caregiving with Love Through a Degenerative Disease

Very well written.

Easy read. My husband has been diagnosed with PSP so I picked this up to better understand what to expect. The book does a great job of walking you through the phases. She also provides good references and tips. Definitely a great resource

My spouse recently passed away from CBD. It was a long, difficult, and stressful journey. A journey which no one can really prepare you for, partly because everyone's path through this is different and partly because most people lack the ability to describe it in a way that is meaningful to others following them. This book helps with the later; it's a description of two paths through this disease - the patient and the caregiver. I read it when my wife was first diagnosed and was profoundly depressed - I suggested that she not read it, no good would come from that. Our journey was similar in many respects and different in others but overall this provided a mental and emotional scaffold to better understand emotions in the moment. I recently re-read this, five month after her death, and it reminded me how fortunate I was to have this book as our journey began.

Finding Meaning with Charles incorporates Charles' illness, Janet's caregiving and the medical community's scrambling to diagnosis and help. No matter how ill Charles became, he was unwilling to modify his goals. And no matter how great the effort to help him execute this, Janet was undaudnted. The limits to which they went to help him accomplish his daily runs, trips and presentations throughout the world and many other seemingly impossible tasks were just amazing.There are things Janet did that can make all of us better caregivers. She viewed Charles' slow death as a blessing because "it gave me millions of opportunities to provide support and love. In the midst of the tragedy, I found it rewarding to let him know frequently the value he had brought to my life." He also rejoiced in the many tributes employees around the world sent. These were put on cds so that he could enjoy them over and over again to support him in moments of despair.We can all learn from Charles and Janet how to give and accept care and to make every moment of life meaningful to the very end.

This book is an excellent resource for anyone caring for a patient with either PSP or CGBD, both degenerative brain diseases. Janet Edmunson shares so much of what she went through with her husband, Charles, who had CGBD, very similar to PSP (Progressive Supranuclear Palsy); including the roller-coaster of emotions, challenges, both physically & mentally; the issues involving aides, and many, many other issues that one is faced with during the caregiving process. I would highly recommend this book for anyone who wants to learn more about caring for a loved one who has been diagnosed with either of these diseases, both of which are terminal. It is a great book, and it has helped me understand more about this disease & how it affects my loved one, as well as helping to recognize the value in taking care of ourselves, the caregivers, during this process.

Excellent, Excellent Book. I am only about a quarter of the way into it, but as a caregiver of someone with CBD it is inspiring, shows not alone, and gives hope where no hope exists. Thank you, Janet!

My mother-in-law had Progressive Supranuclear Palsy. I bought this book because I read on a PSP online forum that it was really helpful to caregivers & families of people with this disease. The author does a great job of sharing her story and being honest & upfront about the challenges & rewards of caring for someone with a devastating neurological condition.

Being a caregiver myself, I found the book an inspiration and will have it by my night stand so that I can continue to read the words that are so calming when I am nothing close to calm.

I recommend this to anyone who is a caregiver for a loved one with Alzheimer's.