The Tao of Empowered Caregiving

Last week on my radio show, I had Helena Doyle on.  She along with her sister are the caregivers for her parents.  Both her parents have complex medical problems and live at home.  I loved speaking with her because she learned how to navigate the healthcare system through trial and error.

During our conversation, two comments she made have really stayed with me. The first comment was about advocating in the hospital for her mother.  She said, ‘The medical staff comes in for a few moments and make statements and decisions. They don’t ask if it makes sense to us.  They don’t have to go home with my mother and deal with all the problems. We do.”

She went on to say, that at first she made this mistake of just listening and accepting what the doctors were saying.  She stopped doing that when she realized the doctors had no idea what was possible at home and nor did they care.  She believes most people forget that the focus is the patient not the doctors or residents.

She also stopped accepting excuses when the medical team didn’t answer a page.  She told a great story of firing a hospitalist.  Her mother had been admitted to the hospital and they were waiting for the doctor to see her and write the admission orders.  Apparently, he was on the floor but didn’t come to the room.  Helena actually went up to him at the nurses station to remind him.  He said he would be in soon.  Two hours later (a total of five hours), he had not come in.  So she saw him again, went up to him and said, “You are not caring for my mother.  I am firing you and I want another doctor. “  You can imagine the shock. He tried to convince her but she stood her ground and another doctor was there in 20 minutes.

Lesson #1 Grasshopper is:  Remember, they don’t know you, won’t go home with you, so stand your ground for the good of your loved one.

The second statement, I believe is the essence of caregiving and empowerment. I asked Helena what was her best advise to a new cargiver.  She said, ” Ask the same question 1,000 times, until you understand  the answer!”  Wow! This is the absolute Tao of the empowered patient and/or caregiver.  Don’t feel you can’t ask the same question again and again.  You need to understand it, because you have to live with the answer.  Don’t back down because information is vital.

Lesson #2 Grasshopper is:  Ask the the questions again and again until you understand the answer.