“Keep it light, because the dark side is just too heavy .”
Having second thoughts about what you signed-up to do? Emotional burn-out got you down? 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. Welcome! You are a caregiver!
My name is Dr. Adah F. Kennon. My husband is a honorably retired African American (Black or mixed race heritage) Army veteran. He is on hemodialysis and has kidney disease. I am his “caregiver.”
Our journey began with that role being defined for me by others – social workers, doctors, dietitians, and so on. They told me that I could do the job and “wished me well.”
Based upon what they said, it seemed like a relatively easy assignment. I signed a lot of papers, received a few instructions, and that was that! I quickly adopted a confident “full speed ahead” attitude. I just knew that I could handle “anything and everything.” No problem. I didn’t give it a second thought. After all, I am a “caregiver.”
Then conditions started to deteriorate. It was not long before I was confronted with problematic “situations,” many of which were created by influences outside of my control. Each day brought new challenges and stress. I was starting to realize that this was going to be more difficult than I had been led to believe.
I had to perform under pressure. My commitment was 24-hours/day, 7-days/week, with no time-off for vacations. My “well -wishers” were no where to be found. While I had no intention of giving-up, the confidence I prided myself having was being put to the test.
There were days when I felt overwhelmed, not knowing where to go or who to turn to for help. I felt like I was on an emotional roller coaster!
I knew that I couldn’t continue like that. I was putting my own health status in jeopardy while I struggled to give the best level of care that my husband deserved. This is when I decided that it was time for me to stop trying to live-up to the expectations of others. It was time for me to define 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 my husband? How could I determine the reliability of those resources? I needed coping strategies, and quickly.
My husband is 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 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?
My book has four goals: (1) to help others understand the nature of kidney disease, and some of the challenges faced by hemodialysis patients and their caregivers (especially patients and caregivers of mixed race heritage); (2) recognize who or what is more than likely controlling access to appropriate pharmaceutical drugs requiring medical prescriptions, how they do it, and how they benefit from it; (3) appreciate the wisdom of getting verbal promises in writing; and (4) remain confident 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.
I needed to develop a philosophy which would guide my new role in life as my husband’s “caregiver.” Given everything that was happening, I decided that I was going to be a “caring” light-hearted caregiver. Light-hearted, because the dark side is just too heavy!
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 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.
So, I’m going to start the ball rolling by sharing information acquired during our journey. Patient or Profit: Where Is The Love? is unique, because it is written from the perspective of a caregiver and a patient, and in the spirit of “no holds barred.” I invite you to write a review. Just go to amazon.com/books and enter your comments. I think that you might be interested in this book, because it could be a life-saver!
I invite you to share your stories. Just drop me a note and I will post your comments on my blog. You can reach me through this website, or at email@example.com. Let’s keep it going. Hopefully we can create a community of “light-hearted, caring caregivers.” Wouldn’t that be something special?
Patient or Profit: Where Is The Love? is available at amazon.com/books.
Love, Betrayal, Commitment and Courage
A young African American (Black, mixed race heritage) soldier took an oath to defend the Constitution of his country. Today, he has kidney disease and is on hemodialysis. He needs life-saving prescription medication. But, this honorably retired Army veteran’s sacrifice has been betrayed in the name of profit to satisfy the appetite of the Chaos Cohorts.
Like so many of his contemporaries, he is the victim of “bait and switch.” Big Pharma, the Federal Government, and the Health Care Industry stand accused. As his caregiver, I understand and struggle to protect the “love of my life.”
This is the true story of our journey. We fought the “prior-authorization process” to get what he so desperately needed. This is a “must-read” book for caregivers and those they care for. Patient or Profit: Where Is The Love?