Advocacy

My Mother missed the last step in her apartment stairwell, lost her balance, and landed hard on her butt. Finding that she couldn’t stand, she drug herself the twenty feet to the door leading to the hallway. She reached up for the door handle, propped open the door, and yelled into the hallway for help. The other residents called 911, and she told them to call me as well.


When I found her in the hospital, she was returning from being x-rayed. She was more angry with herself for missing the step than in pain. The nurse came in to release her, and I was relieved until I helped her out of bed. She yelled in pain and could not stand. The doctor came in and again reiterated her claim nothing was wrong and she was free to go.


I was forceful in my disagreement. “My mother does not complain, and she is very strong. If she cannot stand, there IS something wrong,” I said. The doctor was adamant. “There was nothing on the x-ray, maybe it’s in her mind’ the doctor retorted. By this time, I was furious. My mother was in pain. I was trying to remain calm and discuss this, but the doctor’s demeanor was only making me more angry. “Okay,” I said. “Can you at least give her an MRI to check if the x-ray missed something?” The doctor replied, “MRI is gone for the day.” Trying to keep my voice even I asked, “How about a CT Scan?” Exasperated by me the doctor said, “Fine” and turned on her heel to leave.


My mother looked at me and I apologized to her but said, “I know you. You know you. If you are having pain when you stand there is a problem.” The next time we saw the doctor, she was holding a report in her hand, and shaking her head. “It’s the craziest thing. She has a fractured pelvis.”


What the doctor didn’t know is when they took my mother to the CT Scan, I called an orthopedic doctor friend of mine at home and asked him to start the paperwork to transfer her to the hospital where he had privileges. When the ER doctor told me that my mother would stay the night for observation. I told her to forget it. She was being transferred elsewhere. She said, “You can’t do that without another doctor okaying it.” I said, “The paperwork should be at the desk.”


I never realized I was an advocate. People think of holding signs and marching on Washington when they think of advocates. We hold signs for the people we are caring for. I was just trying to do the best I could for my mother. When talking to doctors, I didn't flinch. My Mother was part of the Silent Generation, they never questioned a doctor or their advice.


Of course, your care partner has to be on board with you being their advocate. It is a two-way street. My Mother appreciated my stepping in for her. When a doctor would ask a question, she would pause, knowing I had the answer, because I wrote it down from the last appointment. I made a habit of bringing a binder with me to each appointment. I would take notes, make copies of previous bloodwork or tests, and keep them in the binder. We captured the information in real time and could refer to it when necessary.


As my guest this month, social worker and life coach Phyllis Ivey shared a bit of her story. She said, “I’ve had doctors say to me, I wish there were more people who, who showed up like this. And not to say that people who consider themselves advocates don’t consider themselves because they consider themselves families. But maybe they’re not giving themselves enough credit. It’s helpful in the short time that someone is being treated by someone who doesn’t know them at all.”


Advocacy is also the part where we get to share who our care partners are. We can make them more than just words in their file. The stories we share makes them human. Share their stories. Be informed. Communicate with those who are in the caring position, be it doctors, nurses, caregivers in the community your care partner lives in. You are the bridge between information and care.