Logo Copyright@2018, Adah F. Kennon, Ph.D.
“Keep it light, because the dark side is just too heavy “
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Welcome to 24/7, a website devoted to caregivers, patients and anyone concerned about health care in America. You will find links to resources, inspirational messages, “Me Time Activities” and a very interesting Blog featuring topics of interest to kidney disease/dialysis populations, veterans and African-American populations. Enjoy….
Love what you do but need support and guidance? Emotional burn-out got you down? Feel misunderstood? Looking for positive and productive ways to express your feelings? Struggling to keep your own identity while helping someone else? Then, this is the perfect website for you.
My name is Dr. Adah F. Kennon. My husband was a man of color (African American – Black or mixed race heritage) and a honorably retired Army veteran. He was on hemodialysis and had chronic stage 5 kidney disease. I was his caregiver.
My journey as his caregiver began more than five years ago. It was all so new to me and completely changed my life and the life we shared. Things happened so quickly and tough decisions had to be made. I welcomed the guidance of more experienced folks – social workers, doctors, dietitians and so on. I counted on them to tell me everything I needed to know. Each took a turn defining the role of a caregiver. There was a lot of over-lap, so I believed them. After all, they were the experts. Surely they had nothing but my best interest in mind.
They told me that I could do the job and “wished me well.” They made what I was walking into seem manageable. I signed a lot of papers, received a few instructions, gave them our insurance information and that was that! Everyone (to include me) felt that I now had the kind of confident “full speed ahead” attitude guaranteeing success. I didn’t give it a second thought. After all, they knew what it took to be a caregiver.
It wasn’t long before reality hit. Don’t get me wrong. I loved helping my husband. But, my “me” time became increasingly limited. My commitment was 24-hours/day, 7-days/week, with no time-off for vacations.While available in emergency situations, my “well-wishers” were usually nowhere to be found or had limited time to spend with me. His health started to deteriorate, and problems just kept on coming. The issues around chronic kidney disease and dialysis were stressful enough. Then when I thought things couldn’t get any worse, I was broadsided by something those well-meaning professionals never told me. Maybe it was because they would never encounter it. Maybe it was because they didn’t have a clue as to how to address. But for me it was up-close and personal – how to handle racism and gender bias in the American healthcare system. You see, none of them were people of color. While well-intentioned, what they had given me was a “one-size-fits-all” fantasy based upon their reality. I was open to anything that would guide me on this journey, and honestly without ever having been a caregiver, what they said made me feel that I could handle anything and everything. But I quickly discovered that it wasn’t going to be my truth. The more I encountered, the more alone I felt. I was becoming traumatized, always under pressure, feeling like I was on an emotional roller coaster. I needed help. That’s when I made up my mind that I was not going to become a victim. I put-on my thinking cap and vowed to survive, both for my husband and myself.
I started by re-defining what my role as his caregiver would be. What did I value? What resources would I need to help me do what needed to be done to help him? How could I determine the reliability of those resources? I needed guidance and support. But, where would this come from?
My husband was a very caring person. He saw what I was faced with, and suggested that I channel my feelings in a positive and productive direction by doing the research and writing a book. He thought that I would be good at it. I decided to give it a go, and spent the next nine months “birthing” my first book, Patient or Profit: Where Is The Love? There wasn’t much I could control. But I could control my attitude. I decided to become a “light-hearted” caregiver. Light-hearted, because the dark side was just too heavy!
Patient or Profit: Where Is The Love? is unique, because it is written from the perspective of a caregiver and a patient, with “no holds barred.” This book is a survival manual and empowerment tool. It contains information that will help anyone in need, no matter who you are or what the condition.
My book is now in it’s second edition (2019). The goals remain the same. The first goal will help you understand the nature of kidney disease, and some of the challenges faced by hemodialysis patients and their caregivers (especially patients and caregivers of color). The remaining goals will help you: recognize who or what is controlling access to appropriate pharmaceutical drugs requiring medical prescriptions, how they do it, and how they benefit from it; appreciate the wisdom of getting verbal promises in writing; and, empower you to know that it is possible to find ways to overcome barriers preventing legal access to life-saving prescription medications. I include a lot of recommendations, resources, and words of encouragement.
One of my personal goals was to learn how to be strong enough to know when to ask for help and where to go to get it. This is the reason that I decided to start this website and my 24/7 Blog. I believe that knowledge is power. However, having knowledge is pointless unless it is shared. Caregivers already have enough to do. Why waste time researching something that has already been brought to light.
I invite you to write a review. Patient or Profit? Where Is The Love? (2nd edition) is now available via this website (personalizations with author signature available upon request); Barnes & Noble Book Store;amazon.com/books (scroll down page to Review This Product); or any retail book store (ISBN: 978-0-578-54807-4). Available formats are eBook and paperback distribution. I welcome your comments. I know that you will be interested in this book. It will be a life-saver!
I also invite you to share your stories. Just drop me a note and I will post your comments on the Can We Talk page. You can reach me through this website, or at firstname.lastname@example.org. Although my husband lost his battle with kidney disease in 2019, I intend to keep this site going. Who knows what the future holds. The day may come when once again I care for someone or even become a patient myself. Hopefully we will create a community – a network of “light-hearted caregivers.” Wouldn’t that be something special?
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