Friday, July 17, 2009

Caregiving when friends and family are unsupportive

I want to make it clear that I did not choose to put my life on hold and take care of my dad for the accolades. I did it so he would survive with dignity, love and a medical advocate. My family and "friends" have effectively deserted me and it is lonely for me.

God has special plans for us. My passion has returned to my original passion of investigative journalism and writing. And the passion is combined with my interest in medicine because I believe that there are incredibly gifted and God-sent physicians and surgeon (William Peete, MD; Charles Peete, MD; Mark E Easley, MD; John Guyton, MD; Randy Thompson, MD; Chad Milstead, MD; William Gradishar, MD).

I am crushed to the heart that organizations like the Obama administration and lobbying groups such as the AMA and any lobbying agency with the name Daschle included consider these gifted medical professionals as commodities. Universal health care may be swell for
(a) FMG (c'mon, I am not racist, there is a communication and cultural difference) and
(b) generally unpleasant young doctors that are unable to develop and maintain a clientele.

Those who cannot maintain a patient base are perfect candidates for the Hospitalist Program Model - triage care, get the patient pitched and out of the hospital.

Patients are getting accustomed to not even knowing (much less understanding) their hospital doctors. Discharge instructions are sloppy, incomplete and often leave more questions than answers.

But don't call the hospitalists post discharge - the "stranger doctor" has moved on to another patient base to triage!

My primary experience in at Duke University Hospital in Durham, NC. And I still comfort and pray with two of the families who suffered a death at DUH last Fall 2008. How exactly does Duke purport to excel as teaching institution if they allow the "stranger doctors" who freely profess to patients' families (i.e. me) that their sole purpose is to save the DUH money.

Where is the research? Where are the advancements in medical care? The "stranger doctors" push Duke residents and fellows out of the way and the "stranger doctors" have told me directly that they routinely over-ride the residents and fellows. Good doctoring.

Maybe the medical advancements and world class research still exist at Duke University Hospital. But my dad is a cancer patient. Maybe he is just too old to waste time.

That is not the case with Duke Duke Orthopedics. Dr. Mark E. Easley and his current fellow Dr. Justin Orr evaluate my dad and determine that he can walk again. What is the point of surviving cancer and having zero quality of life? Dr Easley respects my dad. Dtr. Easley is treating dad appropriately for his age. And maybe something will be learned for the next patient. That is what a teaching hospital is supposed to be about.

But in order for the educational research process to succeed, the doctors need the patients and the patients' families. Dr. Easley taught me to care for dad's external fixator and the boundaries of physical therapy. I do not think dad would be alive with any quality of life if I did not have a respectful rapport with dad's doctors (and vice versa).

Expect for mom and dad, my friends and family believe I am out of line when I ask questions. They believe that I should take what the doctor says, write it down and let that poor, overworked doctor move on.

The man I had thought was my best friend in Champaign, Illinois, refuses to ask any question of his elderly mom's recent surgery (abdominal adhesion). I suggested asking the doctor about supplementing his mom's diet with a product called "Juven." Oh no, my "friend" thought that question would be a waste of the doctor's precious time. What about his mom's life?

My brother and sister-in-law rarely call or email to ask about my dad. The two of them enjoyed a family wedding of my first cousin. That would be my dad's first niece. She is not a kid. She never sent me a card when I underwent cancer treatments and of course she never sent a card or email or made a phone call to her uncle who has Stage 4 cancer.

I know that I have sad before that many people just cannot deal with cancer. It is not pretty. But as a cancer patient who is not nearly ill as my dad, I can assure healthy family members that being a cancer patient is lonely. Very lonely.

My strength comes from caring for dad unconditionally and trying to keep my mom/his wife of 55 years in one piece. My strength is also gained from trying desperately to educate Americans that Obama is very serious about eliminating medical care as we know it. Doctors with any self respect wont play this game. The good ones will remain in research or work at private/no insurance practices.

I want doctors and surgeons in the US to succeed and continue to be the pride of our country and the standard of medical care throughout the world? (p.s. why did the leader of socialized medicine Italy come to US's Mayo Clinic to get heart surgery? hmmm)

Someday perhaps my family and "friends" will understand my goals. Or maybe not. There are only two people who matter right now - my sick dad and my worn out mom. I give all I have and anything I can think of to help my parents. Perhaps my family and "friends" are not as personally invested in the health and well-being of those in their lives. All of them seem very defensive whenever I cautiously offer an option to help one of their sick loved ones. People make their own decisions.





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