By Julie Gorges
I’m Your Daughter, Julie: Caring for a Parent with Dementia is the fourth book I’ve published, but the one that I’m most proud of – dedicated to my Mom who bravely fought Lewy Body dementia (LBD) and the 15 million noble unpaid caregivers – most of whom are family members – who care for a loved one with dementia.
LBD is a cruel combination of Alzheimer’s and Parkinson’s symptoms that render people helpless both physically and mentally toward the end of life. It is known for tormenting its victims with vivid hallucinations, delusions, and night terrors. Sometimes my mother was in a complete state of panic because she thought a bear was in the laundry room, a tiger was swimming in the pool, or baby lions were squirming in the bottom of her bed.
I had never heard of this brutal disease before Mom’s diagnosis. However, LBD is not rare. According to the Lewy Body Dementia Association (LBDA) and the Mayo Clinic, it is the second most common type of dementia after Alzheimer’s. Thankfully, more people have become aware of this disease after it was discovered that actor and comedian Robin Williams suffered from LBD at the time of his death. Recently, CNN founder Ted Turner was also diagnosed with this disease.
Still, much remains to be done to raise awareness. As LBDA’s site points out, although this disease affects an estimated 1.4 million individuals and their families in the U.S. alone, it is currently widely underdiagnosed, and few individuals and medical professionals are aware of the symptoms, diagnostic criteria, or even that LBD exists.
One of the reasons I wrote this book is to draw attention to this lesser known type of dementia. Admittedly, at first, I couldn’t immediately immerse myself in the painful memories of watching Mom slowly lose her mind, deteriorate physically before my eyes, and take her last breath. Nevertheless, eventually, I felt compelled to write the book out of a desire to help others learn from my experiences, successes, and mistakes as a caregiver.
This book is a memoir of sorts sharing my intimate story, but it is also a practical guidebook that I would have found beneficial during those difficult years. Let’s get real. Like many who care for family members, I was unprepared, inexperienced and untrained when I was thrust into the role of full-time caregiving. Most of us are not nurses or professional caregivers. The books I purchased on the subject were thick and overwhelming. Time was limited, and I didn’t need to know all the science behind what causes dementia or try to decipher essential information from fluff often used as filler to meet a publisher’s page requirement. In a short amount of time, I needed to know how to communicate with my Mom when she was being unreasonable, how to help her get dressed when she became immobile, and how to keep my sanity. That’s why my concise book is about 100 pages, easy-to-understand, and to-the-point.
In addition, the mourning process for a caregiver is somewhat different and I wanted to share ways that family caregivers can move forward after their loved ones die. I wanted to share ways they can heal, reinvent themselves, and go on to live a fulfilling and happy life.
By sharing my journey with others, I wanted to make the process a bit easier and provide some comfort to all those losing their loved one a little bit at a time like I did.
About the Author
Julie A. Gorges is an award-winning journalist and author. She is also a blogger at BabyBoomerBliss.net, recently recognized as one of the top baby boomer blogs on the web. Julie’s work has appeared in dozens of national magazines including Woman’s World, True Romance, and Cricket. During her mother’s final years of life suffering from Lewy Body dementia, Julie was a full-time caregiver.
I’m Your Daughter, Julie: Caring for a Parent with Dementia: Amazon
In the summer of 2017, I participated in a special program called “Art Reflects” for people with Alzheimer’s disease and care partners. The program was hosted at the Community Arts of Elmira (Elmira, NY.) One of our classes was about mask making and I was especially excited and intrigued to create a mask that would reflect what it meant for me to live with Alzheimer’s disease. But the more I thought about it, the more I realized I couldn’t make just one mask—because there were so many dimensions to living with the disease. Before I knew it, I was up to 30 masks.
The Rev. Dr. Cynthia Huling Hummel, is a fierce Alzheimer’s advocate and a voice for those living with the disease. Diagnosed with amnestic Mild Cognitive Impairment in 2011 and with AD in 2016. 
I’m Your Daughter, Julie: Caring for a Parent with Dementia is the fourth book I’ve published, but the one that I’m most proud of – dedicated to my Mom who bravely fought Lewy Body dementia (LBD) and the 15 million noble unpaid caregivers – most of whom are family members – who care for a loved one with dementia.
