About 8 years ago, my mother-in-law was sitting next to me waiting for a table at a restaurant with the rest of our family. She was uncomfortable and said she had a bladder infection that made it hard for her to eat out. First I asked how long this had been going on, and she said over a year. Then I asked if she had seen her doctor, and she said yes, about every six weeks, and each time she was put on a course of antibiotics. She also said that the last time, she told the doctor she had blood in her urine. The doctor responded by asking her if she knew what color blood was.
At this point, I began to see red. My mother-in-law's mental capacity was never dulled, and the dismissal of her observations was either obnoxious at best or negligent at worst. She was in an HMO and I knew that, until she went through the gatekeeper of her primary care physician (PCP), she would not be seeing a urologist. I asked that she make and appointment with her PCP and to take me with her. So began my journey into advocacy.
We went to the appointment and the doctor asked for a specimen. While my mother-in-law was out of the room, I was told what a lovely lady she was, to which I replied, "Yes, and she's sharp as a tack, and if she says she saw blood in her urine, that is what she saw."
We were referred to the urologist. The urologist told us he thought there might be some scarring of the urethea and the best thing to do was to install a stint with minor surgery to relieve the bladder pressure. In the meantime, he had her put on a catheter to help with involuntary leaks.
On the day of surgery, I was the one who took her and stayed while the rest of the family went about their business. When the doctor came out of surgery, I was the one who was waiting. He told me that my sweet mother-in-law had advanced bladder cancer and that the choices were: remove the bladder and possibly give her an embarrassing and painful small amount of time, or, allow her to pass away within a little over a month due to uremic poisoning. I called my father-in-law. He came from work, and the surgeon explained the choices. He said if it were him, his choice would be to do nothing, because uremic poisoning was relatively painless. And after a few minutes, the decision was made. My mother-in-law went on hospice. She was actually gratful the decision was made this way because her only fear was that she would die in pain.
My advocacy for my mother-in-law came too late to save her, but I do the same for my father-in-law and--until she moved to live with other family members--for my mom. I go to all their appointments with them and deal with their meds, and with juggling all of their meal requirements. It has not been easy, but my grandkids still have two great-grandparents. And that's thanks enough.
Advocacy is crucial in the face of stereotypes of the elderly and of gatekeeping physicians whose HMOs are reluctant to refer patients to specialists.
Do you have experiences advocating for family members? Does your family look to you as the caretaker? What kind of help do you need? Share your experiences in comments, and let's keep this conversation going.