When my husbands step mother was diagnosed with Primary CNS Lymphoma (brain cancer) in February 2012 we were all in crisis mode. She was confused and disoriented and experiencing a lot of pain. Thankfully we had engaged in conversations about end of life prior to this and my father in law felt as though he knew what her wishes were in a general sense.
As steroids and chemotheraphy shrunk the tumors my mother in law regained her capacity to engage in meaningful conversation. We had many. We talked about treatment options and the potential outcomes of those treatments. We talked about what was important to her in terms of the goals she would hope to achieve in her life and what her hopes were for her healthcare. Some days we talked about the coming months. Some days we talked about what the final days would look like. Many of these conversations were just between her and I in quiet moments while chemotheraphy drugs were dripping into her veins. Many others included her children and her husband. A few included her health care team she was abundantly clear about certain aspects of her care and had specific wishes around intervention she would and would not be accepting of. We revisited these specific wishes with each change in her health circumstances. And when her goals for her care changed we were sure to communicate those goals to her health care team.
Eleven months after diagnosis we were near those final days. She was more confused and it became hard to know for sure what she did and did not understand. Yet we continued to talk.
This journey has been a difficult one. There is nothing easy about watching someone you love experience pain and distress. But the conversations we had and the confidence that we as a family felt in knowing her wishes for her final days are a gift. A gift that she gave to us by being so open and courageous in speaking about her life and her death with us. We are sad. But we are not in distress. We faced those days with her advocating for her and supporting her health care team in honoring her wishes. Now that she’s gone we miss her tremendously. As sad as we are we continue to take comfort in knowing that the end of her life was the way she wanted it to be. Conversations matter.