Alison shared her story in March of 2023.
My mother referred to her plan to access California’s End of Life Option Act as “The Project.” During the last two weeks of her life, she and I would go somewhere private for a check-in to talk about how “The Project” was coming and where we were with the paperwork. It was like she was my boss and I was her assistant.
Mom had followed the medical aid-in-dying bill’s passage in California closely. As someone who cared deeply about her quality of life, she had always been an advocate for this option. She watched her own mother slowly decline from dementia and was her caregiver for two years, which instilled in her the conviction that when she could no longer participate in life, there was no longer any point in living.
Living, after all, was something my mother excelled at. She loved jazz music and was an avid dancer. In her later life, she discovered zydeco dancing. She had her jazz club and her zydeco group she saw every week. She was also a very generous person who volunteered at the hospice thrift shop. Although giving back to her community was a big part of her life, she went about this in a quiet way. She was sensitive, thoughtful and always optimistic.
In the mid-1990s, my mother discovered that she had squamous cell cancer on her tongue. The subsequent radiation treatments killed the cancer, but they also killed her saliva glands. For a year, she could only have liquids, and even then, swallowing was painful. After that, she pureed food for herself. Despite being unable to eat solid food, my mother was still out and about, dancing, meeting up with friends, bringing her nutrition with her to social gatherings and having a great life.
In 2002, my father was diagnosed with brain cancer and passed away less than a month later. Mom chose to live alone after his death. She did well; she eventually met someone, and they traveled together to Hawaii and elsewhere. She also remained very optimistic about her medical situation and tried many different procedures, including getting her esophagus widened, but nothing was a long-term solution. Because of her lack of saliva, her tongue atrophied over time, which made it difficult for people to understand her when she spoke. After years of seeking other solutions, my mother chose in consultation with her doctor to get a feeding tube.
Because she had a MIC-KEY, an extended tube with a syringe she could depress to deliver her nutrition rather than a drip bag, Mom was still mobile, taking a trip with me, my sister and a suitcase full of formula four months after her surgery. She was game for anything.
Unfortunately, things took a downward turn. My sister, who had been diagnosed with cancer and wasn’t doing well, and my mom both moved in with me so I could provide them with the care they needed. Mom started having trouble with aspiration, and in December 2016, she went into the hospital for pneumonia. When she came out, she needed to be on oxygen 24/7.
Still, Mom’s attitude was amazing. She participated in a very sought-after respiratory clinic, doing all the exercises recommended to her. She tried everything she could to make herself feel better.
From 7 a.m. to 7 p.m., her days became a series of treatments: breakfast by feeding tube at seven, then the nebulizer at eight, then an inhaler at 10 o’clock, then the feeding tube again at lunch, followed by the nebulizer again and so on. She could no longer go out; any enjoyment of a social life she had was virtually gone. Her life just shrunk.
I think the clincher for my mother was the smoke from the terrible wildfires that swept California in the summer of 2018. She couldn’t go outside at all because of the air quality, and we had to keep all the windows closed day and night. Even with air conditioning, the situation made her feel claustrophobic and fed up. “I’m stuck inside!” she would say. It was very hard for her.
That, on top of the fact that there was no reversing her deteriorating health, prompted my mother to request medical aid in dying. On the morning of Wednesday, August 1, 2018, my mother woke up and said to me, “I want to die … TODAY.” She was done with all of the machines and other aids that were keeping her alive.
We called her palliative care doctor, who was supportive, and a hospice nurse arrived the next day, August 2. When we informed them that Mom wasn’t really interested in hospice care and wanted to access medical aid in dying, they referred us to a doctor who was willing to serve as her attending physician.
On August 3, we talked with the doctor over Skype. He explained the process, including that the drugs had to be self-ingested, another doctor had to agree she qualified, and the minimum waiting period was 15 days. The waiting time was a blow to my mom, but she was happy to hear that this conversation counted as Day 1. Only 14 to go.
During those two weeks, we went about our usual routine, plus the paperwork to access the law. My mom invited a few close friends to come by one at a time so that she could say goodbye. Mom was noticeably more relaxed now that she had her prescription.
On August 15, Mom woke up and asked me, “Did we do it?” “What?” I said, confused. “The Project, did we do it?” “No, that’s tomorrow.” Rolling her eyes and plopping back on her pillow, she replied, “Oh, dang it!”
August 16 finally arrived. A few close friends came to the house to be supportive, and the doctor arrived and went through the same required questions with Mom once again. Satisfied, he then prepared the medication in her syringes. Two of my cousins joined me and my sister at my mother’s bedside. She had picked out her outfit — a pretty blouse, a little sweater and a floral skirt. The long sleeves on the blouse were bothering her, so she sent me to fetch the scissors to cut them off. Now she was ready.
Without hesitation, Mom picked up the filled syringes and inserted them into her feeding tube, one after the other, put them down, got comfortable on her pillow, and closed her eyes. My sister sat on the bed beside her holding her hand, and I sat at the foot of the bed.
It felt like less than five minutes until she died.
Although my father had passed almost 20 years earlier, Mom had kept his bath towel all that time. Before Mom’s body was taken away, I ran and grabbed the towel so that her body could be wrapped in it.
Through “The Project,” my mother had control over her life at the end. I think that took away a lot of the stress she was feeling. From her, I’ve inherited the belief that no dying person should be forced to prolong their suffering if they don’t want to. There’s a peaceful, gentle option, one that my mother embraced wholeheartedly. Knowing that she wanted this option and that I was able to go through it with her gives me much solace.
