As I continue the drama of finding Dad the care he needs/wants, I have been astounded at the majority of medical professionals we are dealing with. I say I know these things, but when I am actually interacting in reality with it vs. speaking theoretically, I can’t believe things are as backwards as they are.
While most people wouldn’t say they believe this, in practice they betray they do. I am realizing that even medical peeps hold to the idea that every person wants to live as long as possible. If they don’t, then there is a mental illness (like severe depression) or they are “not of sound mind.”
Dad has literally been badgered repeatedly even though he has been crystal clear and actually has it in writing on every kind of medical and legal form possible.
Are you sure you don’t want an antibiotic?
Do you understand you may die from infection without an antibiotic?
Over and over and over again. This week’s appointment resorted to actual bullying and attempted manipulation. Dad stood his ground and I eventually exploded at them. The doc responded with:
“This is not medical care in America. American medical care does not work like this.”
I know palliative care is relatively new outside of hospice, but I can’t believe he was serious. He is even young. Uneducated, uninformed and therefore treating patients unethically.
Caring for a loved one with a debilitating disease, eventually losing them, etc. is so unbelievably exhausting and heartbreaking. But dealing with this nonsense repeatedly is beyond maddening. I literally shake with anger and frustration. No idea how to fix the mountain of an issue. How can we change facilities when the doctors don’t get it? And how do we change doctors when they are trained to believe death is failure?
Systemic issues aside, I have my father to care for. Please keep him and my exhausted family in your prayers as we attempt to navigate an incredibly complicated set of diagnoses with treatment options that are Catch-22’s at best, in a system that is utterly broken and unsupportive. What a sentence that was.
One moving, profound (to me) bright spot. Frankie turned 16 this week and asked me a ton of questions to try to understand what is happening with his grandfather. He absorbed the horrible information and asked for clarification that indicated that he indeed understands the depth of the problems and their significance.
He asked if Grace, his and my doctor, would be able to help Grandpa. I said that she is an excellent doctor and would respect his wishes but is unable to take on any new clients. He thought for a moment and said, “Mom, why don’t you and I give her up so she has room for him?”
I cried later in my room. I love that kid. He tries to pretend he’s selfish and uncaring because he’s a teenager. He’s not fooling me. He has an amazing heart.
Give yourself some time to think about these issues for yourself.