I had thought that I had a lot of experience being an “advocate” for a sick person. After all, I unfortunately had a lot of practice with doctors and hospitals, as a result of my daughter Christine’s decade long struggle with Lupus.

I knew all about coming to a doctor’s office or hospital armed with a list of questions and a notebook for notes. I think I mastered the art of preparing a “waiting room bag” – filled with goodies, reading material and bottles of water. I even remembered to bring a box of cookies or candy for the nurses. And way before Chris started listing her medications and a brief history of her illness on her computer ready to print out, I had all this information listed and Xeroxed.
So while I though I had perfected the nurturing skill for being a patient advocate, I recently discovered a common sense tip that I am ashamed to say I never used- a daily journal.
A little over three weeks ago my eighty year old mother went in for total knee replacement. From the hospital she went to a Rehab center and in the ensuing weeks she has dealt with the expected pain, as well as an unexpected and annoying urinary problem. Each day I would speak to someone about her condition and each day I would be given another story or another promise that things would soon be handled. In looking back, the first obvious mistake I made was not getting the name of each doctor, nurse and aide with whom I spoke to and not keeping a journal of her progress (or lack thereof).
Finally, I went to the rehab center with a clean notebook and I jotted down whom I remembered speaking to, during the previous few days and exactly what I was told by each health person I had spoken to. Then armed with my notebook, I asked to see the administrator of the facility. Told that he was busy, I said I would wait and I sat outside his office. Suddenly, I got some attention. I tend not to want to cause problems or seem like a complainer, because I somehow think that the patient will not get help or compassion, if everyone views her or her family as troublesome. There is a difference between being a bother and being legitimately concerned. I am happy to say that after a meeting with the head nurse and the doctor, it seems that my mother’s health concerns are finally being more actively addressed.
I decided to leave the notebook in my mom’s top drawer and now when I visit her I jot down the date and time I was there, how she is doing, who I spoke to and any changes in her condition or her treatment. So far this is working out very well, not only as a way of keeping a running log, but also as a way of keeping my siblings informed as they tend to visit later at night, after I have gone home. At a glance they can see what is new with my mom, instead of the multitude of back and forth phone calls and voice messages. Hopefully we will not need to refer to the journal again, as far as documenting our efforts to get my mom some help, but if we do, we will have some notes from which to draw.
Christine has always said that being a patient is sometimes like a full time job. Even when you are healthy, taking care of yourself can seem like a job. Just trying to consciously; eat well, take vitamins and meds, exercise, relax and find time to de-stress are challenges. Being an advocate for someone (and every patient needs to have one), takes both time and thought. I Hope this tip helps you to save time and organize your thoughts.
written by Janet Miserandino © 2008