Advocating for your loved one at the end of life

Five years to the week after I was diagnosed with breast cancer, my mother was diagnosed. She had known about the lump in her breast for a while, but my brother was going through some difficult health issues at the time, so she put off her own. Either that or she suspected what it was and didn't want to know. My mom was 72 when they found the mass, and mass it was. Measuring the size of an egg, it hadn't shown up on the mammography she had received because it was against the chest wall. Mammography is supposed to find these masses too, but... I don't know why they missed it. She got her mammograms at a military hospital as my dad was retired Navy. But no matter whether it was on the mammogram, she could feel it, and she should have told them to stick a biopsy needle in it way before she told me about it. Of course, I scolded her. I was doing cancer 24/7 by then, speaking and educating women about breast cancer, but my mom ignored her own. She just apologized and said she didn't think it was anything. I made an appointment with my surgeon, and she immediately scheduled her for a biopsy. My sister and I accompanied her to the day surgery and, knowing it was going to take a while, went to lunch. My sister, not having done the cancer march, was sure it was nothing. I think there is a sense of protection when one person in the family gets cancer. The others think, "Well, my family has done their part, and now I don't have to worry." Wrong. When we returned to the surgery center, I knew the good signs and the bad. When we walked around the corner, all the recliners were filled with people recovering from other biopsies. Mom was not there. I froze. That meant she was in one of the cubbies, small private rooms where bad news allows some privacy. My sister thought it was sweet that she got a room and everyone else was out in the big area. When we walked into the space where mom was recovering, my surgeon was with her, and mom was crying. I stood for a second, and it was like her life and death flashed before me. When she apologized for not taking the lump more seriously, I knew it was malignant. My surgeon said she would have the full pathology back in a week, so we took mom home and began planning. My mother called me the executive director of her cancer.The first step was to move my dad, suffering from late-stage Parkinson's disease, to my sister's house until we could find a good nursing home. He needed the kind of care that she, with three little ones, could not provide for very long. Then we met with my surgeon, who gave us the whole story. Mom's cancer was already in her lungs, the reason she had been so winded lately. Mom was hardly listening, knowing that I would translate everything that was being said later. What the news told me was that my mother was dying. It was 1991, and we didn't have any of the life-prolonging drugs now available. I also knew that caring for my father had taken its toll on her, and I questioned her desire to live. Three rounds of chemotherapy didn't help, and, if anything, hastened her demise. Her immune system was wiped out and the cancer galloped. She was diagnosed in November and by March,1992, it was clear to me she didn't have long to live. It was also time for us to have a conversation about what she wanted. My oncologist, now my mother's oncologist, kept offering the next option, and I knew that the likelihood of them working was growing dim. When Mom and I talked about the next option after number three didn't work, I said, "Mom, you know you have the option to do nothing and enjoy the time you have left with a better quality of life."She immediately said that was what she wanted, telling me she was afraid to bring it up for fear she would be disappointing all of us by not fighting. My mom was a Navy wife, hauling four children from base to base for 26 years while my dad served his time. I knew she was a fighter. I also knew she was tired. What that discussion provided was time for us to talk about what she wanted. We planned her funeral, and we made sure all the paperwork had been taken care of. Now I know there was so much more we could have done that we didn't in terms of discussing what she wanted and how she felt about her life. I didn't want to accept that it was going to happen as quickly as it did.For the next month she did nothing, and because she tended to be stoic, she lived with a lot of pain. She was staying with my sister, who had moved my dad to my brother's house. Dad was out of it, and I don't remember if they ever even had a conversation about mom's health. His dementia had increased and he often went days without speaking to anyone. What I knew was that my mom had a strong faith. It had grown since the death of my brother, a Navy pilot killed when his helicopter crashed during flight training in 1972. What I didn't know was how to help with the pain. When new spots showed up on her spine, I knew the pain was bad and palliative care hardly existed then. Little was done to help those in pain. Not until my sister called me in mid-May to tell me Mom's pain was really bad, did I know just how stoic she had been. I told my sister to meet me at the emergency room of the hospital. When I got there, Mom was in a wheelchair, and it was clear she was in serious pain. I told her this was not the time to be stoic, and that we had to let them know this was serious. Her moans brought me to my knees, but it sure got her in a room faster. When the first ER doc walked in, I said, "Get her out of pain, NOW." Had I not dealt with the healthcare system for my own cancer, I never would have had the guts to be so demanding. Bu it worked. I knew she needed morphine, and when the nurse came in and tried to start an IV in her arm, I told her through clenched teeth that mom had a port. The nurse said no one there knew how to access a port, and I replied, "Then go find someone."A nurse from the pediatric floor was there in a matter of minutes and Mom got the morphine that would immediately take away the pain. The relief showed on her face, and I kicked myself for not doing something sooner about her pain. But why hadn't her oncologist?Our oncologist was out of the city, but I insisted they admit her for pain control. That was Wednesday. On Thursday they moved her to the hospice floor, and I knew she would probably not be going home. But she was blessedly out of pain, and when she was lucid we could talk and joke. We called her brother in California and told him to come now if he wanted to say goodbye. He didn't make it. On Friday when our oncologist came by, he said he wanted to start radiation on Monday to help with the pain. I just stared at him, thinking, no way. And at that moment it became clear to me how little the docs knew about pain at that time. My sister and brother immediately looked to me when he left, but luckily the hospice nurse spoke up and said Mom would not make it to Monday. She explained the signs to us of swelling that indicated her kidneys were shutting down. Both my siblings wanted to believe the doctor, but I told them to believe the nurse, since doctors seldom saw the end of life. We sang to her and talked to her even when her eyes were closed. I knew hearing was the last to go and we wanted her to know we were with her. My brother was with her when she died. I had gone home for the first time in two days and was sleeping when I suddenly sat straight up in bed. I know now it was her spirit coming to say goodbye. When the phone rang moments later, I picked it up and heard my brother's voice. "She's gone." I look back now and know that I should have demanded pain support much earlier than the week she died. How could I let her be in that much pain? Why didn't she tell us sooner?They are all questions that will haunt me. Today, you have the chance to make it better for those you love. Demand palliative care and demand it early. Pain is not acceptable and it can be controlled to give people a good quality of life.