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 the last time, she told the doctor she had blood in her urine and 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 was as sharp as a tack and the dismissal of her observations was either obnoxious at best and 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 see a urologist. I asked that she make and appointment with her PCP and 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 was going 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 a few embarrassingly painful years or allow her to pass away due to uremic poisoning. Well I called my father-in-law, he came from work, the surgeon explained the choices also saying 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.
My advocacy for my mother-in-law came too late to save her, but I do the same for my father-in-law and my mom, going to all their appointments with them and dealing with all their meds and juggling all of their meal requirements. It's not easy, but my grandkids still have two great-grandparents and that's thanks enough.
Do you have experiences advocating for family members? Does your family look to you as the caretaker? What kind of help do you need?
