The good manners that our mothers taught us, those manners that help us in social situations and open up doors and allow us to have a lovely conversation at a dinner party, those same manners do not serve us well when we are advocating for someone who needs help. Sometimes you need to put the manners on the sideline and find your most direct words for communicating. I have witnessed it firsthand. I have been called in to be a patient advocate – that pit bull that accompanies a person to a doctor’s appointment or stands guard at the bedside. I have relied on people to be that pit bull for me. The reality is the healthcare system is complex. It is intimidating. It is labyrinthine. And whether you are the caregiver or the person who is being cared for, it is just downright complicated.
One of the great myths that I find about family caregiving is that if we stand up for our loved one’s rights, then somehow the doctors and nurses caring for them will not treat them as well because they will not like us as much.
I know the medical system about as well as anybody. I have been a practicing surgeon for 30 years. Years ago my father became very ill and frankly nobody was moving fast enough in my local hospital to suit me. I was obnoxious. I went out and hovered at the nurses’ station. I took a phone out of a nurse’s hand so I could talk to the doctor who was trying to avoid me. And I was every doctor’s and nurse’s nightmare. And you know what? Those interventions saved my dad’s life. I knew my father was on death’s door and that every hour counted and I did not have time for niceties. I needed things to get going. I do not care if a nurse didn’t like me after I was long gone. I did not care if a doctor said, “Perhaps we are not a good fit.”
All I know is that I have an obligation to those I need to protect. Most of the time, the system is great. But when it is not, even if you are not a courageous person, you have to summon all the courage you have and speak up because caregiving is not a role for the timid. And that is one of the things, frankly, that makes it so damned exhausting.
To me, caregiving is about quality of life as much as it is about length of life. And it is about letting the person who is being cared for have a piece of the decision-making when possible. Life with dignity and death with dignity are two things that we do not talk enough about. But isn’t that dignity and caring what we really want for everyone?