Meagan Burns sits on Deirdre Allen's lap holding her child.

Meagan Burns sits on Dierdre Allen’s lap holding her child, Dierdre’s grandchild.

I lost my mom on December 21, 2020. She was ill with a very rare brain disease and chose medical aid in dying to help end her suffering. I’m sad, but I’m so grateful my brothers and I got to see her off. I’m thankful the decision was hers to make.

Dierdre Allen was an independent, strong and ballsy woman. She was a loving mother who made me and my brothers Aaron and Duncan homemade donuts every weekend when we were growing up. She wasn’t a good cook, but the donuts made up for it! She was the most creative and talented person. She sewed, played guitar in bluegrass band, she was a jeweler, quilter and silversmith. She loved crafts and she could fix nearly anything. 

She was my best friend. We spent 20 years working together creating two businesses–we made tinctures and opened an apothecary, and built a database of factual information about herbs and natural supplements, which we eventually sold to the Ministry of Malaysia. Mom was incredibly intelligent.

Eventually, I moved to California and mom remained in Vermont, but there wasn’t a day that we didn’t talk.

In 2016, mom started experiencing some issues with controlling her bodily movements. She went to multiple doctors, but they couldn’t figure it out and kept telling her they couldn’t find anything wrong with her. Finally, in 2019, a young, new doctor confirmed that mom had a rare neurological disorder called corticobasal degeneration (CBD)–a disease little is known about, there is no cure for and only gets worse.

Mom continued to deteriorate. She experienced more falls–bruises and a broken leg. She started shaking–they think there is some relationship between CBD and Parkinson’s, but they’re not sure. She was cognitively there, but her body wasn’t responding to her brain.

In the fall of 2020, mom decided she wanted to access Vermont’s medical aid-in-dying law. She wasn’t feeling well and she could not do the things that she usually did. My mom had always been superwoman. She could chop wood for hours. In her last months, she was very frail. She wasn’t the mom I knew. She had done research on her disease and decided she did not want to go down that road of decline and hospitalizations. Mom was determined to end her suffering.

Mom’s doctor, however, was committed to fixing things for her. But there was no fixing her situation. For weeks she and her doctor went back and forth regarding her obtaining an aid-in-dying prescription. He saw her determination and that she was right–things weren’t going to improve for her. He finally agreed to help her. She was his first medical aid-in-dying patient. He let her make the choice.

In early December, mom shared her plan to take an aid-in-dying prescription to end her suffering, “This is how I want to go out and I want all of you with me.” We all promised to return to Vermont and be with her. We didn’t want her to suffer, we didn’t want her to be in this pain anymore, we didn’t want her to fall again and potentially break another bone, and we knew the prognosis was terrible. We all supported her in her decision.

She spent her last two weeks completing projects, and stayed up until midnight the day before she planned to take her medication finishing quilts for my son and daughter–her only grandchildren. 

On December 21, 2020, my two brothers and I got up at 6 a.m. with mom. Her friend Susan picked up mom’s medication and joined us just a couple hours later. Mom didn’t act like she was scared at all. That morning, mom’s doctor called her to say thank you and good wishes. At 10 a.m. she took her medication and instantly started to fall asleep. We all sat there and held her hand until she passed. I held my mom the whole time. I wouldn’t let go of her. It was sad, but I knew she wasn’t in pain anymore.

Mom passed away peacefully at the age of 70–she died in her own home within two hours. She made the right decision for herself and the situation her disease had left her in.