My mom had a stroke in 2002, and all of a sudden the word STROKE really meant something. It was something horrible and sad and it involved a lot of health care facilities and providers, and lots of tears and hours of OT and PT until she finally came home Then it was more hard work with different home health providers as she fought towards gaining some sort of independence.
Since I spent a lot of time caring for her we had many discussions about what was now the new norm regarding independence. We had many conversations about how comprised her quality of life had become.
I am an avid reader of The Boston Globe and enjoyed reading Ellen Goodman’s column for years. So when she left the Globe, and I read about her new cause, The Conversation Project, the timing seemed perfect because around that same time she was diagnosed with heart issues. We had “the conversation”. I came armed with the starter kit, and told mom about Ellen Goodman’s project. I expressed the importance of understanding what she wanted and how much easier it would be for myself as well as my other siblings, to acknowledge her wishes if we knew exactly what those wishes were. During our conversation, she said she was “done “with any more hospitalizations, and that she wanted to die at home, and not take any extraordinary measures to keep her alive.
In 2015 my mother had a growth removed from her back which turned out to be melanoma. The dermatologist who did the surgery, delivered the news in his office on the day we came to get the stitches removed. He was soft spoken and explained that there were no clear margins and at this point he would refer her to Dana Farber for further testing and determination of what the next steps would be. My mother shook her head slowly and said, I am not going to do anything. And he bent over to look her in the eyes, and touched her shoulder and said that she could certainly opt for doing nothing. He explained that he would send his findings to her PCP and refer her for hospice care.
The drive home was quiet, yet knowing this was clearly what she wanted, it was easier to accept the road ahead.
Hospice delivered the comfort kit within the next few weeks, and checked in on a weekly basis for 5 months. One day she thought she had a UTI, the next day she was in a lot of pain and was bleeding significantly. Rather than dialing 9-1-1, we called hospice. Hospice came, put a plan together for her pain management, told us to gather the family. Within the next 18 hours my mother passed away, surrounded by her loved ones. Her death was the way she wanted, and because we all knew it was exactly as she wished, her passing was so much easier to accept.