Sunday, February 21, 2010

The Power of Love

My daily routine would start nearly every day the same way:on the phone with my best friend who happens to live more than 450 miles away. We would talk when we dropped off our kids to school and were on our way to work. We would talk about our rebellious children, our husbands, our reports from the kids' schools and our daily trials and tribulations. Looking back, the kids stomping their feet in anger, the husbands forgetting special days, the smart talk from our kids when we took their video game system away due to their grades was nothing compared to the tragedy that followed.

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.

Saturday, February 13, 2010

Who Am I? An Existential Question

It was the journalism degree, of all things, that turned out to be the sturdy dinghy in a mighty storm. When my child was diagnosed with a neurological illness, I went into investigative reporter mode – for years. The research kept at bay the nauseating sense of helplessness. The pointed questions to doctors and school staff kept them honest. And the writing – succinct, on-message sound bites to summarize my objectives for each check-up – improved my child’s care. Today, I firmly believe it played a strong role in bringing his health and functioning to optimal levels.

Strangely enough, the illness in turn softened my crusty reporter’s heart. That adage about “the really important things in life” became solace as any career aspirations I had faded away. A unique capacity for great patience and compassion would have remained untapped had this illness not joined our lives. And I slowly, painfully became adept at the art of optimism, a virtue heartily scorned in the journalism world. There are good doctors, there is the kindness of strangers, there are strong and compassionate friends without whom we would have never weathered the storm.

Next up, meet my best friend who was my rock and salvation as my child and I journeyed as lay people through the medical maze.

Elaine lives outside of Philadelphia with her husband, three children, and her Phillies World Series commemorative earrings.

(Artwork courtesy of

Thursday, February 11, 2010

Feeling Like a Lab Rat in a Medical Maze

It's been six-plus years that I've been navigating the medical maze to care for a family member with a chronic illness. Over and over, I've become frustrated that “I don’t know what I don’t know.” Sometimes, my search to fill in those knowledge gaps has resulted in a solution that doctors loved, and they would say “I wish all my patients did this.”

Sometimes, the answer was found with other patients traveling a similar road. The advice came from strangers online who offered up their own experience for no other reason than to ease the path of other children and families dealing with similar issues. The sharing and caring, and swapping of strategies was invaluable.

And then there were the frustrations that were never answered. These were often the bigger issues – health insurance plans, the marketing strategies of pharmaceutical companies, the broader question of how our doctors are taught about patient care in medical school.

The creation of this blog comes from a desire to bring all the lessons together. To make it easier for the patient and the caregiver to navigate the medical maze. To support doctors who can knowledgably and accurately treat each individual. To empower ourselves to actively participate in our own physical, spiritual and emotional well being.