Saturday, February 4, 2012

The medically-minded caregiver.

I am inspired today by a professor of mine who has created an informational and open blog about his cancer diagnosis.  He is using it as a teachable moment, and by doing so has touched people all over the world.  You can check out his blog at: http://dbocancerjourney.blogspot.com/  to learn more about his journey.

I don't anticipate reaching nearly that many, but hopefully some of my closer friends who are medical professionals can take note of this blog post for when they are caring for their own family members.  There is a huge burden of expectation placed on the medical professional who is also a family member of an ill person.  In my case, the burden is primarily self-imposed, but it is also evident in interactions with mom's care team.  As a medical student, I am constantly afraid I am missing something medically with my mom.  I feel this way because I am the person most present in her life, and I know (a little) about the human body and the normals and abnormals of disease.  It is probably also because she is such a unique case (her age, her presentation, her progression).  If her pupils look funny or her gait has changed, I am immediately trying to figure out what has gone wrong.  It is a painful and taxing process.  I am sure this is the case for anyone who is in the medical field and simultaneously caring for a loved one.  You know about the mistakes made everyday in medicine.  You know all too well that doctors are incredibly fallible.  You want to protect your family member from medical errors, polypharmacy, neglect, and misdiagnoses.

For me, I am always worried we have missed something big.  That there is an underlying process causing mom's illness that could have been stopped.  That when we do a post-mortem on her we will find that if we had only done _____ test we would have been able to save her memory, that I would have had her for 20 or 30 more years.  It is a painful burden to feel this way, but I am certain that I am not alone in this feeling.

Probably the most important piece of advice I have ever gotten was from a physician friend when I was talking to her about my feeling a loss of control in mom's care.  I sat down with her and was beside myself with grief.  I explained my fears that mom's care team was missing something.  That because she had been moved so much and had been passed off by so many, I was certain she was falling through the cracks.  I told her that I felt like it was my fault that this was happening because I am mom's advocate, her constant in this fluctuating process.

This was when she gave me the very best advice I could have heard at the time: "You can't do everything, Mariah.  When you are the family member of a sick person you must check your medical degree at the door and be the family member.  You cannot try to figure everything out because in the process you will drive yourself crazy.  All you can do is equip your mom with the very best medical team, and step back and TRUST them.  It is NOT your fault if something goes wrong in her medical care, it is NOT your responsibility to catch medical errors, and you can't control everything."

Medicine encourages perfection.  It pulls in people who won't settle for anything but the very, very best. Combine that with the love of a family member, and even more importantly the love of a parent, and that perfectionism runs rampant.  It is important to give to your loved ones, to be there for them, to support them.  I guess what I am learning now is that it is also important to let go and trust others.  That doesn't mean being blind to blatant mistakes.  I will always be mom's biggest advocate and will certainly fight for her to continue to have the very best care.  However, I am working diligently to give up the reigns a little bit.  To be her daughter that just happens to be a medical student, rather than a medical professional constantly on the watch when I come to see her.

Because when I come wearing my "medical professional" hat, I miss moments like this: