thedragonicouldntslay

This book is to help bring Global attention to FTD (Frontotemporal Dementia) and to help find a cure. No one knows what causes FTD and there is no cure. It is an unknown disease with many variations and it is often misdiagnosed. It is a younger person’s disease usually in the age group of 60 or younger. Many patients have speech problems and sometimes become mute. One third of cases are genetic.

Hopefully getting an earlier diagnosis will help those who can be treated and healed early in the disease once a cure is found. 

The actor Bruce Willis was recently diagnosed with FTD and PPA, (Primary Progressive Aphasia), which is loss of speech. It is a devastating disease that takes away the personality and behavior of the individual. Different than Alzheimer’s which takes away the patient’s memory, FTD steals who we are. That is the tragedy of FTD. The person we once knew is replaced with a person who has lost their personality, their behavior and manners to the point we no longer recognize them.

This book is also about the author who struggled daily with the many changes of her husband who was diagnosed with FTD and PPA in 2013.  

The daily journal entries, are the true confessions of the feelings of despair and frustrations as they happened to the caregiver. It is a lonely journey and the grief is overwhelming. No one can prepare you for the obstacles one has to endure.

The hope is that with more people becoming aware of this dreadful disease, it will be diagnosed earlier as NO ONE should have to live with this devastating disease and NO ONE should have to lose their loved one to it.

Partway through my journey with FTD, I started writing in a journal to ease some of my frustrations of dealing with the many faces of FTD. I realized I wasn’t the only one suffering through this battle. I was not alone and my feelings of guilt were quite normal, but I did not feel so at the time. It was through trial and error that I handled each situation on a daily basis. 

I later realized that other people must have felt the same way as I did. I never thought that I could disclose some of my feelings like I did in this book, but I realized it was necessary to get the message out, “that it’s okay to feel what you are feeling.” 

Nobody taught us how to relate to our loved ones or understand this disease. With all the books on childcare that have been published over the years, parents have realized that the information doesn’t always hold true for each child. At the time it seems like you are raising all of them the same way and yet each and every one turns out differently. Each person afflicted with FTD is just as different as each child. The difference between child rearing and FTD is that our children grow up or forward, but our loved ones afflicted with FTD move backward. This is the most heart-breaking part of FTD. It’s like going back in time, and there is no rhyme or reason for it. It just is what it is. The outcome is always death. 

I pray that this book about FTD helps others deal with what I call 

“The Dragon I Couldn’t Slay.” 

~True Confessions of a Caregiver~

I read somewhere that the brain turns into a carnival when we tell our stories. Lights switch on in our heads and neurons fire more rapidly. Oxytocin, a natural feel-good hormone, is released in large amounts, whether the story is happy or sad. Through telling our stories, we are reimagining ourselves. It happens even more when we hear other people’s stories. Through stories we all survive. I hope I will bring those feel-good feelings to you even though my story is a sad one.

To Beecher:

Missing you is a heartache that never seems to go away. My life has gone on without you, but it will never be the same. I am fortunate to have your many poems, the numerous photos, the watercolors and all the memories you gave all of us throughout our marriage and this journey. Thank you for the lessons. I now know the meaning of the statement, “I am not defined.” Defining who I am is about removing the labels and expectations others including myself, placed on me and recognizing that my past does not define me or my future.