Dedication
This book is dedicated to: My beautiful wife, Christy. What a journey we have been on! Since that wonderful day we each said, “I do,” we have enjoyed the roller coaster ride. Over the decades together, we have had physical, spiritual, financial, and mental struggles, but God always brought us through those hard times. Though I may not remember ALL of our good times now, I do know we have had more good times than bad. I know I am the luckiest man in the world to have you beside me through all these times. You and our son, Kyle, mean the world to me. I cannot thank you both enough for helping me during the difficult and ever-changing times with this disease. My love for you both keeps me going, even when my mind cannot communicate it out loud. ~Don
Foreward
Every now and then, you meet an amazing person who changes your perspective on life for the better. When this person is married to an equally awesome person, you feel as if you have won the lottery. Don and I met in 2007, during our quest to complete our Bachelor of Business Administration degrees at Averett University. We met outside of the classroom once a week to complete assignments, and through those various meetings (over a period of four years) I quickly developed a close friendship with Don and his wife, Christy.
A year into the program, Don shared his Alzheimer’s diagnosis with me. I was SHOCKED! He was so young and so smart. Through statistics and accounting classes, Don excelled with numbers and helped me pass the classes. He quickly calculated problems in his head, which earned him the role of the “bean counter” in a skit we performed for the class. If the disease was changing him, I could not see any signs of the changes. By the end of our four-year quest, I could see small changes in Don. The papers that were once easy for Don to write and organize were now constant sources of stress and aggravation. Luckily, Don made it through successfully. Our graduation was one of the happiest days of our lives! We DID it! We overcame the hurdles we faced, and achieved a dream of ours. We both were determined to balance our careers and families, while reaching towards our goal for a four-year degree. We needed to prove we could do it ourselves, but we also aspired to set the bar higher for our children. I can remember Don fighting back the tears because his parents did not live long enough to see him graduate. That was the first time I saw the raw and emotional side of the cruel Alzheimer’s disease. It is hard to watch the disease take a toll on the individual you care about and love.
After graduation, our friendship continued. We enjoyed baseball games, hockey games, trips, and many dinners and lunches together. Over the years, Christy continued to keep me abreast on the changes with Don. However, when we met for lunch or dinner, I was unable to see the changes she described. For my 40th birthday, we took a trip to Atlantic City, and the changes hit me in the face like a jagged brick. My heart ached for Don and Christy because I knew the changes meant progression of the disease. Little did I know how well they would adapt to the changes and challenges of Don’s Alzheimer’s journey.
Don informed me many times that he knows this disease will take him from this earth one day. He reiterates over and over his desire to help find a cure for those diagnosed in the future. I am so proud of Don and Christy for humbling themselves to tell their story! With admiration, I watch Christy help Don tackle new obstacles that arise. They are easily the epitome of selfless love, always thinking of others amidst their own storms.
Through my friendship with Don and Christy, I am privy to many life lessons. First and foremost, keep your faith strong and your smile big. Their faith in God is always on the forefront, and they share their love with their families, friends, church members, and community. The journey is rough on both of them, but each time we meet they both are smiling. I know you will enjoy Don’s stories in this book, and his talent will radiate through his poems. Enjoy the read! ~ Heather
Introduction
Alzheimer’s disease is not as foreign to hear about as it was when I was diagnosed over a decade ago. However, most of the information you hear about is secondhand or third party. I have yet to see an Alzheimer’s patient write a book about what it is like to actually live with the disease for over a decade. It dawned on me that I have a story to tell. I want to tell it before I am no longer able, so I finally sat down to share my perspective on living with Alzheimer’s disease in the first-person with the help of my son. For a very long time, I felt a desire to put all of my experiences into a cohesive collection. My hope for this book is to provide assistance with understanding this disease, and provide insight about experiences that may help those going through similar ones. I did not always feel this way. Initially, I had a long struggle with my diagnosis and often contemplated, “What now?” I finally came to the conclusion that I needed to find a purpose to live, instead of a reason to be angry.
During the early years of my Alzheimer’s diagnosis, I quickly discovered it was not a topic discussed very much. One common misconception I heard a lot concerned the age of an Alzheimer’s patient. Only older people have Alzheimer’s disease, right? I am here to tell you that is false. A lot has evolved in Alzheimer’s discussions over the last ten years, but one fact remains…there is no cure. My goal is very simple. I want to help educate everyone I possibly can on Alzheimer’s disease, and what it can feel like living with the disease.
Sundowners syndrome is only one of the “symptoms” an Alzheimer’s patient has to battle with the disease. The Alzheimer’s patient may become terrified at the onset of sunset because it opens up a world of unknowns that are filled with fear. Is someone outside? Did I hear something? What is that noise? After reading this book, my goal is for you to understand more about the daily life of someone living with the terrible disease we refer to as Alzheimer’s disease. You never know when the disease could strike in your own family and friends’ circle. Prepare yourself with knowledge that will allow you to better understand some of the behaviors and/or patterns that you will see with Alzheimer’s patients.
People with Alzheimer’s may find an outlet to communicate, such as drawing, painting or writing. They are all activities that allow expressiveness without verbal communication. I enjoy writing poetry, and I believe it allows me the opportunity to explain and express my ideas. You will see many of my poems throughout this book, and they are all original works. This book will provide a lot of insight for caregivers, families, friends, and the community on the struggles of living with Alzheimer’s. Though I will not label myself an expert, I know first-hand what living with Alzheimer’s disease entails. After all, I have been doing it now for over a decade. I can also confirm Sundowners syndrome is real, and it is not any fun at all.
SUNDOWN
The sun and moon make their rounds,
Two, three, four surely by now,
Raindrops falling hit the ground,
I try to count them to cover the sounds
Of what’s at hand, the dark you know,
It covers the land…
The creeks and cracks that darkness brings,
What I would do to hear a bird sing,
A sign for sure that night is gone,
Everything wakes I'm not alone,
My eyes closed tight I try to sleep,
But something won't let me…
I had better go look…
I wander around in the dark with no aim,
Only to check things, to see they're the same,
No danger, no strangers, all is at ease,
Except me, of course, who can't shake this disease.
I'm not afraid of being sick, or even dying;
That’s not worth all the crying,
I have the faith and trust I need,
God has promised my