What Would I Have Done Differently, Part One

Mother has been gone about 20 hours now.  I would have liked to have slept about 19 of those twenty, but that has not been my privilege yet.  My body and brain are wired--a combination of grief, relief, questions and an exhaustion that won't yet permit sleep.

So, since I can't sleep, I may as well write.  

The question racing through my brain right now:  What would I have done differently if I had known then what I know now?

A lot.

The number one non-negotiable thing is this:  I would have absolutely insisted on much, much more information than I ever received about the extent of the damage of my mother's initial stroke on August 13, 2010 (actually series of strokes, but we didn't learn even this much until well into the process.) Neurologists can tell a great deal about what has been damaged by the areas of the brain affected by the stroke.  And I received only sketchy information about this, and nothing in written form.

As I look back on that initial hospitalization at Medical City Dallas, I see myself wandering in a fog of too little information; of one physician not talking to another physician; of no real coordination of care.  At one point, I requested a patient advocate. No one ever showed up.  Shame on me for not pursuing this more aggressively. Shame on them for expecting people who are thrown into a highly confusing experience with minimal information coming our way to expect to know what questions to ask and where to get those answers.  

It is difficult to make good decisions without an adequate knowledge base.  Only knowing that "some people can recover well from such a large stroke" was just not nearly enough. Yes, some people can and do, thanks be to God.  But are they 88 year old sedentary women with a years-long history of untreated high blood pressure and a heart that goes in and out of a-fib all the time?  Not to mention a woman who had written express medical directives in such a case--directives that were being routinely ignored?  

So, what else would I have done differently?  I would have made sure I had essentially memorized my mother's directives and would have asked to sit down with someone to talk them through rather than hurriedly signing a consent to treat in the Emergency Room.

Would this have delayed life-saving treatment?  Not in her case.  There is only a very short window of time in which clot busting drugs can be administered after a stroke and she had long since passed that window.  She actually received no treatment at all for the first 48 hours except for someone checking her vital signs every hour and a sugar water drip.  There would have been plenty of time to have considered all options.

I am not beating myself up over this.  All this is a learning experience.  It is more my hope that someone else will learn from this and that we all find ways to more effectively handle our health, life and death issues.

So, I'll just keep writing, keep thinking about all this, and see where this goes.

Thank you for all the prayers and words of support.  Despite the exhaustion, I am very aware that this has been a holy experience, and I was immensely privileged to walk with my mother as she opened her eyes at the very end and welcomed the coming of the angels.