Updated: Mar 6
I have always found sunsets - especially sunsets over bodies of water such as lakes or oceans breathtakingly beautiful. Eventually, there came a season in my life when I dreaded sunsets. They brought fear and anxiety to my dad. As the sun fell, casting shadows of falling leaves and branches blowing in the wind on the walls of his room, my dad would start sun downing, bringing with it unwanted guests through his hallucinations. It was at this time during his illness that I went from basking in the beauty of sunsets to seeking silver linings.
You may have a parent that has been diagnosed with Parkinson's Disease or Dementia. As I sought resources for how to plan and cope for my dad's journey, many of the books were written from the spouse's perspective. Rarely could I find anything written in the voice of the daughter or son. This journey takes you through my dad's very personal journey through my perspective as his daughter.
Once we have a parent diagnosed with Parkinson's Disease and/or Lewy Body Dementia (or any chronic condition,) we find ourselves asking so many questions and we can easily get overwhelmed. We start asking ourselves: What will my part need to be in my parent's journey? What can I expect and how do I plan to ensure my parents receive the absolute best care? How can I honor their wishes of independence while protecting their safety? How will I ever balance having my own family to raise and a demanding career while caring for my parents? What impact does COVID have on my parent to receive quality care? Can they stay at home, or do I need to help them shop for community living? The questions and the scenarios are endless.
Sunsets and Silver Linings tells our unique story of my dad's journey with both Parkinson's and Lewy Body Dementia. We faced nearly every scenario one faces on this journey - falls resulting in a broken hip that required replacement and inpatient rehabilitation, chronic UTIs, difficulty swallowing, hallucinations, Capgras syndrome, anxiety, depression - you name it, we went through it.
My ultimate goal is to share our story so that you might be able to learn from our A-Ha moments or hard lessons learned through tips and best practices to practically support your parents through this season. Based on many typical questions often found in online support groups and chats, I have compiled a list of some of the most common questions asked, and I provide resources and research to help you tap into the information you need to equip and better prepare you for the journey.
You will find our personal story throughout the text in the book, and the grey shaded boxes bring in key resources for your consideration. This is never meant to be a replacement for consulting with your medical providers. And, you should always check the links provided for the latest updates to ensure you are getting the most current information. My goal is to show you where to go.
Part I is heavy on the research, defining Parkinson's and Lewy Body Dementia and exploring the various symptoms and treatment options. It is meant to give you a better understanding of the diagnosis. For some, this section might be quite boring, but stick with me - I can promise the book becomes more engaging throughout the following sections. This section provides you with the questions to ask yourself and your family members to help you prepare and plan, knowing what boxes to check to make sure all necessary paperwork and documents are in place, going over insurance options, and navigating home versus community living.
Part II is focused on the caregiver's journey. How will you balance it all? How can you cope with the emotions of caregiving? How can you help your parents cope? How do you take care of the caregiver - as your other parent may need your support now more than ever.
Part III focuses on hospice and preparing for the advanced and final stages of the journey. One of the most common questions is understanding when and how to start hospice. While emotionally gripping, it is also very inspiring. While sad and hard to accept, understanding the end of the journey helps us better accept and engage with the beginning and middle stages of the journey with our parents.
While all paths are unique - there are some similarities where we can help each other out. Knowing when and how to consult a physician or neurologist is a critical component to any neurodegenerative condition.
I can remember when I was in it, the days could feel very monotonous and long. I was exhausted, tested, physically and emotionally. Some of the days seemed downright impossible. In fact, this may very well be one of the hardest seasons of your life, but it may also be one of your most purposeful callings. Your parents will need you -- whether it be hands-on care or as their biggest advocate and cheerleader.
Our story is one of joy, heartache and sacrifice. And while sad, there were times when it was happy if we just sought out the good times and were mindful of our reactions while providing care.
Some of us choose to be caregivers. For others, caregiving chooses us. In this book, we will learn how we as children of our parents can give it our best, but also how to give ourselves grace and get our rest. My prayer for you is that you can find the beauty and joy in this journey amongst the most challenging and darkest days. May this book make the extra weight a little lighter, and knowing you aren't in it alone a little brighter.
A portion of the proceeds of this book will benefit respite services for Parkinson's and Lewy Body Dementia.
A Note from the Author: While this book is available on Amazon and Barnes and Noble in hardback, paperback and e-reader formats, I encourage you to make your purchase from the link above from my publisher, Xulon Press. Amazon and Barnes and Noble both take more than 60% of the proceeds from the sale of any book. By purchasing directly from the publisher for the same price, you are able to help others more with PD and LBD with a higher contribution from royalties. I'm sure many other authors would also appreciate this approach as well.