“Keep it light, because the dark side is just too heavy “
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24/7 is a website devoted to caregivers, patients and anyone concerned about health care in America. The website provides links to resources, inspirational messages, and relevant information.The Blog includes topics concerning health care, and features those dealing with kidney disease/dialysis, veteran and African-American populations.
Love what you are doing but looking for 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. Welcome!
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.
My journey began with others defining that role for me – 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 additional stress, especially as I learned about the state of health care in America. I was starting to realize that this was going to be more difficult than I had been led to believe.
Don’t get me wrong. I love what I do. But, my “me” time has become increasingly limited. And, I have to perform under pressure. My commitment is 24-hours/day, 7-days/week, with no time-off for vacations. While available in emergency situations, my “well -wishers” are usually no where to be found. While I have no intention of giving-up, the confidence I pride myself having is always being put to the test.
There are days when I feel overwhelmed, not knowing where to go or who to turn to for help. I often feel like I am on an emotional roller coaster!
Something had to change. 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 him? How could I determine the reliability of those resources? I needed guidance and support. But, where would this come from?
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? Given everything that was happening, I decided that I was going to be a “light-hearted” caregiver. Light-hearted, because the dark side is 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 what the condition.
My book has four goals. 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 mixed race heritage). 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. Just go to Patient or Profit: Where Is The Love? on the amazon.com/books website and enter 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 my 24/7 Blog. You can reach me through this website, or at firstname.lastname@example.org. Let’s keep it going. Hopefully we will create a community of “light-hearted caregivers.” Wouldn’t that be something special?
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