release day finally arrived for Dancing around the Chaos!
After thinking about this book for years, it’s finally a reality! It’s hard to believe there is an actual book I can hold. I hope Mom and Dad would be proud of me. Even after all these years, I want to please them. I do know they would like hearing about the people who read their story and what a difference it made in their Alz Journey or even what a difference it made in their commitment to those they love.
In the early days of the disease, when I heard stories of others in later stages, I actually thought…”Well, I know that will never happen.” Little did I know what the future held; I was very naïve. Many times along the way, I would remember something a friend had shared with me two or three years prior, and reality would settle in. We were there; those things were happening. It was hard, no doubt, but at least I knew others had been down this road. That gave me comfort.
Our visits, I was learning, had more of an impact on Mom than was obvious to us. She didn’t usually know who we were; we had no meaningful conversation; and we were all exhausted from trying to keep up with the mayhem. Mom had not had much of an appetite for 7-10 days. Dad said it had been hard to get her to eat anything, but on this day…something was stirred. She was happy – and she was hungry!
It will be a day full of memories of Mom. I still feel like I should be looking for a special gift, ordering a corsage (which she loved!), planning time together. It seems strange that this process, practiced and perfected over many years, has simply disappeared. Truthfully, because of Alzheimer’s, Mother’s Day vanished years ago, long before Mom passed away.
I ran across this post a couple of days ago on Twitter, written by Roger Marple, who is living with Alzheimer’s. I found his writing so refreshing and inspiring that I reached out to him for permission to share on this blog. Be sure to watch the attached videos…will be well worth your time.
We had to face reality. Finally, we realized we could no longer pretend this wasn’t happening; the situation at home would never improve – the decline continued. We had to have help for the sake of safety if nothing else.
Our first plea for help went to Home Health Care, and they were lifesavers to us. They made regular visits to the house, made sure medications were in order, checked vitals, gave baths, and most importantly, became friends to Mom and Dad. Their visits brought laughter and good conversation about growing up on a farm and working in the oilfield. Their goal, they explained, was to bridge the gap between home and the next level of care. I wanted to believe that this level, Home Health Care, was all we needed; surely it would be sufficient for the duration.
When our kids were little, we lived about eight hours from their grandparents. Our long trips across Texas, with three little kids buckled in for that long ride, were…well…long! We tried all kinds of tricks to make the ride seem shorter as we passed through town after town.
We tried traveling at night when they would normally be in bed. That worked about half the time; the other half, they were wide awake and afraid because it was too dark.
Dancing around the Chaos is now available for pre-sale on Amazon!
This book is simply the true story of what happened on the Alz journey with Mom and Dad.
Why did I write the book?
My reasons for writing the book, telling the true story…what really happened are basically:
To help others beginning the journey – to share information that may be helpful to them, even if it is hard to tell…and hard to hear.
To make it clear to those who don’t understand what Alz is…it is a cruel disease of the brain affecting 5.7 million Americans. According to the Alzheimer’s Association, that number could rise to 14 million by 2050. It is much more than just forgetting someone’s name; it is the 6th leading cause of death in the U.S.
To share a sweet story of two people who loved each other to the end. Their journey made it possible for others to witness a true, one-of-a kind love story and raised the bar for many.
Research has been going on behind the Alz scenes for many years. I had never given much thought to what exactly this means until I read the book, The Inheritance by Niki Kapsambelis.
Auguste Deter was only 50 years old when she met Alois Alzheimer in 1901. Alzheimer was the first to recognize, after her autopsy, that lesions he found in her brain were linked to what was referred to as the “disease of forgetfulness”. Most doctors in that field had little interest in his work at the time. Sadly, he did not live to see his findings proven. He had, however, laid the groundwork for future generations.
Shortly after I let coworkers know that we were grappling with Alzheimer’s disease in Mom’s life, a friend gave me this book written by Lisa Genova.Since then, I have read it two times, listened to it on Audible once, bought many copies to give away to others, and I’ve seen the movie!
Lisa Genova has a degree in Biopsychology and a Ph.D. in Neuroscience from Harvard University, and she is a master storyteller. She weaves together the account of Alice Howland, a Harvard professor, who finds herself facing a diagnosis of Alzheimer’s at just fifty years old. From the beginning, Genova allows the reader to walk in Alice’s shoes, experiencing the diagnosis and life afterward, through Alice’s eyes.
My second son was born 34 years ago today. I can hardly believe that much time has passed!
He was a beautiful baby with a full head of dark hair, olive skin and perfect features. I couldn’t take my eyes off him! I remember telling Mom, “I know he’s my baby and all, but I just really think he’s beautiful!” Mom smiled and said, “Well, you know…every old crow thinks hers is the blackest.” I had never heard that saying before, but truer words were never spoken! I can’t tell you how many times I’ve repeated those words over these 34 years!