Monday, November 18, 2013

I Am At Work and I Have No Clothes

We finally had a diagnosis: A terminal kidney condition. I went from not knowing any of my Mom's doctors to having them all on speed dial. The doctors on the other hand don't talk to anyone unless called upon. Welcome to the tangled web called the medical system. What I learned rather quickly is that each doctor treats for their own speciality; the kidney doctor is trying to save the kidney, the cardiologist is trying to keep the heart healthy, the neurologist is trying to keep the brain sharp. I started to equate all these specialists to "subcontractors". But the "contractor", her primary care physician was not a collaborator either. I found out through numerous phone calls and speaking with many nurses, care givers and wellness case workers that the only doctor that really likes to collaborate with the family in this sort of case is a Palliative Care Physician. Thank god for Dr. Perch!

I received a call from Mom, "Hi Betsy, It's Mom. I'm at work and I have no clothes". I need you to come get me so I can come home". That broke my heart. She was equating her hospital room with a place she did not want to be; work. I knew at that moment it was time to bring her home for good. I look back on that call and the look on my mom's face in the hospital and truly believe had it not been for that meeting with Dr. Perch where she told my brother and I that we were doing the right thing; to remove her from the medical system and put on her hospice, she would not be here today.

No one wanted to tell us what the answer was. No one would tell us how much time she had. No one wanted to take responsibility for taking her out of the hospital or removing her from the medical system. Including Mom. We asked her if she wanted to go home so that she could be closer to Daddy and she would just say "well, I guess there is really no great outcome". So Dr. Perch helped us decide by saying "You need to stop chasing magic fairy dust". And so we did. She was given six months to live.

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