Monday, July 19, 2010

A Cautionary Tale

Whether you've been diagnosed with bipolar disorder, thyroid cancer, or have never had a funky day in your life, this kind of thing can happen and does, all the time.  Without advance directives you may be at the mercy of the ER and hospital, should a serious emergency arise, and you have no one present who will speak up for you to say, "She's bipolar.  Here is a list of the medications she's on.  Here is her psychiatrist's name, here is her primary care physician's name and number.  She has a DNR"  Everyone of us should carry a card that says at least this much about us.  Because if you have family that feels shame or denial about your mental illness or any illness and those people can speak for you in a situation where you can't speak for yourself, their shame and denial can kill you.

I know a man who has been overseeing his elderly sister's bipolar disorder.  Due to his diligence to get her the best possible psychiatric care, she was on the medication necessary to control her bipolar psychosis and other bipolar symptoms.  Anyone on her cocktail of drugs might seem a bit slow on the uptake, a bit casual about disorder and mess.  To a religious and disapproving sister who didn't believe her sister was psychotic, only uncooperative and lazy her sisters psychosis would seem like another kind of illness altogether.  The brother was out of town when the bipolar sister had a crisis in the presence of her disapproving sister.  Psychosis was misdiagnosed at the ER and her medications were not administered making her psychosis worse.  She was admitted to the hospital, but not the psych ward.  She was six weeks in the hospital developing strange symptom after strange symptom that eventually developed into pneumonia and then something that made them think she needed her gall bladder removed, or some other surgical procedure, and then an infection and then, death.

The man was notified of his sister's hospitalization, probably by the sister who did not believe in bipolar disorder.  Because of HIPPA laws and the strange politics of family dynamics he was not given authority to intervene in any decisions about her care.  He watched helplessly as his psychotic bipolar sister died inch by inch. 

Her funeral came a couple of days after the funeral of Wayne, his friend, the pianist who died in a car crash after the Salt Lake Jazz Festival.  I can't begin to imagine his grief.  But I can imagine my own death in circumstances where I have a stroke or accident that lands me in the hospital with no family at all,  and my friends are unaware that I'm in need of their help.  I'm a solitary woman who seldom leaves home.  But when I do, anything could happen.  Life's messy like that.

When I finish this I will type up a list of my medical conditions, all medications I take on a daily basis, the names and numbers of all my doctors, the name and number of the friend to call in case of an emergency.  I will keep copies on me at all times, just in case.  I don't fear death, but I do fear mistreatment in a hospital if they do not know my history of bipolar disorder.  I also fear mistreatment in a hospital if they do know I'm bipolar.  Medical professionals are not immune from mistreating the mentally ill.  I know.  It happened to me in a much less serious circumstance when I was in the hospital with diverticulitis.  There are people who have no compassion for the mentally ill in every ER in the country. I know,  I had a roommate who worked in an ER and for most ER staff, someone who is crazy and needs emergency medical attention is seen as much less deserving of sympathy than almost anyone else.  We are just a pain in the ass.