When Elaine shared with me the medical issues she dealt with one of her children, I immediately went into RN mode. I was torn as to how I could help being so far away. Does she need a nurse that is 450 miles away or does she need a friend to support her and try to guide her in a positive way? I decided that the latter was what she needed and soon found out that I could use my nursing knowledge to guide her in her thirst for knowledge. She is an excellent investigative reporter because she can teach me about neurologic disorders. Her search for information was amazing and mindboggling. Sometimes I just clarified the doctor's role and let her know that she was deserving of more from the doctors. Sometimes it was helping her to see the objective side of things. I know that sharing ideas and thoughts on this level has brought us closer together and I can not imagine either of us going through this without the other.
My own journey on the other side of healthcare-as a caregiver to a loved one-began the day my mother had a heart attack. She was in the emergency room being seen for back pain when I got to the hospital and saw that she was admitted into a room. She was not responding to me. I knew something was very wrong, this was not just back pain. All of a sudden nurses came running in and slapped electrodes on her chest, back and legs. They told me that her bloodwork came back and levels of cardiac enzymes indicated that she was going to have a heart attack. They wheeled her to the Coronary Care Unit with my dad and I almost running with them. We got there and I got to feel the chilling feeling that so many families feel when getting bad news. My mom finally spoke. She yelled out, "I am going to die!" Those words still echo in my head. The cardiologist said, "Lower the head of the bed, we are going to intubate her." The nurse looked at me and said, "Do you want us to intubate her?" I was desperate as I gasped to breathe for my mother and said, "yes." This began a four month process which I did not want to go through. That first night the medical staff told us that her heart was functioning at 10% and if she pulled through she may need a heart transplant. That night was miserable. I felt so helpless to do anything. I hated being on this side of the medical treatment.
The next months were full of ups and downs with her care and response to treatment. She was in three different hospitals and a nursing home for rehabilitation. She experienced good care, negligent care and mediocre care. I was horrified. I debated with doctors about their plans of action, medication choices and ordered tests. I am the coordinator of a nursing assistant program and could not believe the poor level of care that was often delivered at that level. I told some to change their gloves upon entering her room and if it were not for me, she would not have had her teeth brushed at all over those four months.
What do families do when they do not have this basic nursing knowledge? I am committed to help these family caregivers become empowered and demand the care that their loved ones deserve. My mother beat the odds and I feel it is nothing short of a miracle that she has been at home with my dad for the past two and a half years. And no, she did not need a heart transplant. I want all patients to get quality care and have their family members empowered enough to make a difference in their healing to reach their optimal level.
Diane lives east of Cleveland, Ohio with her husband and son. Her and her husband also have a daughter at The Ohio State University. O-H-I-O! Go Buckeyes!
Photo: Diane's mom, Dolly, recovered and celebrating her golden wedding anniversary with her husband Herb.
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