Erin Law (GAELO Volunteer)

Papa Ray was bigger than life. He was a gentle giant, with a big smile and an infectious laugh. My grandfather, the eldest of 6, was born in 1930 on a farm in Itawumba county Mississippi. He never finished school so he could help out on the farm. As a teenager he would go to a local donut shop to seek advice from his elders. He bought a small farm in 1960 and became a pillar in his community. He supported his family by working nights for the local newspaper and working his way up to being the head pressman. He put his son, daughter, and son in law through college with his paper route and newspaper machines. He maintained the grounds of his church. He helped his fellow parishioners with home and garden repairs. He was known for lifting a truck out of a ditch with brute strength, and held the corner of a roof up with his shoulder, because he couldn’t be bothered to wait for help. When he retired from the paper, he would meet all of his fellow retirees at the donut shop, a tradition from his youth that he continued until there were no retirees left.

He loved his wife dearly. He cared for her after a brain aneurysm, and took care of her once she developed Alzheimer’s. In his eighties he took a pick ax to the in-ground pool, dismantling it piece by piece so she wouldn’t get confused and drown.

Two years after she passed away he developed epilepsy. When he was in the hospital being evaluated for a seizure it was determined that he had Parkinson’s disease. His doctors told us he couldn’t be on his own anymore.

I lived in his guest house at the time, and was recently married. Our family wanted to keep him at home as long as we could, so me and my sweet husband looked after him.

Parkinson’s disease occurs when the brain cells that are responsible for producing dopamine, stop working. There are a ton of symptoms that can occur in patients with Parkinson’s, the one that was the most debilitating for Papa Ray was Parkinson’s Disease Dementia or, PDD. It is a type of dementia that is particularly scary for the patient, as it often involves visual hallucinations, sleep disruption, and paranoid delusions.

At first it was explaining why he couldn’t drive daily, multiple times. Covid hit and it was just the three of us, as well as my mom and his hospice nurse for months. He was isolated and lonely. It wasn’t long before he didn’t understand what going out was. Then there were men coming to steal his things, they were in the trees, they were moving his property line. Then he was up at all hours in the night because he just knew something bad was going to happen. He would search the house from top to bottom for something, for what, he didn’t know. Then he couldn’t remember his wife had died, and constantly looked for her. On the occasions that he remembered that she was gone, he would grieve yet again.

Then he didn’t know who we were. One day after I had made him dinner, he accused me of stealing. “Oh, no Papa Ray, I have my own money, I don’t need to take yours.” He called me a liar. I cried. I just cried. I was so tired. And this man, he was so tired. I made myself busy cleaning so I could compose myself, and later found him sitting on his bed, shoulders slumped, staring at the floor. “I’m sorry Papa Ray, I seem to be failing at this,” I said leaning on the doorframe. He looked at me with such pain in his eyes, “Can I have a pistol?”

The next few seconds were like this for me: How could he ask me this? Me of all people? How could he!

Because on March 8th 2006, my father died by suicide, and on February 17th 2010 my fathers brother died by suicide, both self inflicted fatal gunshot wounds. Papa Ray was horrified at what my dad did, all of the pain he caused my family! Why would he choose to hurt his family in this way?

Deep breath. Because he is tired. He is desperate. He is scared to be in his own body, and to think his own thoughts. He doesn’t know what is real and what isn’t. I wouldn’t want to live like that either. Deep breath, “I am so sorry Papa Ray, I can’t do that for you.” Deep breath, “I wish there was something I could do to help you, but it is too late to make those types of choices.” He sat for a while with his head in his hands, until he grew tired and I took off his shoes and tucked him into bed.

I had a hard time sleeping that night. How could this mountain of a man, who was always so strong, the oldest of 6 kids raised on a farm in rural Mississippi, head of a multiple generational family, be reduced to begging to end his life violently because he has no other options? Then I remembered, when I was a teenager, the man that owned a neighboring farm, died by a fatal self-inflicted gunshot wound, after receiving a terminal diagnosis. One of my oldest friends’ dad also died by a fatal self-inflicted gunshot wound after receiving a terminal diagnosis. How awful for those families. Just like mine. They didn’t get to say goodbye to their loved ones. They have so many unanswered questions, so much anger, and grief. These men wanted peace, but left behind so much chaos.

We have got to do better, and we have the resources to do better. What would it look like if families sat down together with their doctors and their lawyers and set up a plan for all sorts of scenarios? Over the years, I have had those conversations with my mother, who is a cancer survivor. I know that if she got diagnosed with cancer again, she would not seek treatment, she would seek comfort. Knowing what my mother wants, and having plans in place makes me much more confident about being in charge of her care as she moves into her twilight years.

Both Parkinson’s and Alzheimer’s run on both sides of my family. I have every reason to believe that my siblings, my mother, and myself will be facing some of the same challenges that Papa Ray did if we are fortunate enough to live long enough. I think we all deserve to choose how to meet the end of our lives peacefully, without having to resort to self-inflicted violence that will scar our families for generations.

Georgia is better than that.

Video Jamie McNeil
As a resident of Georgia, Jamie has been a passionate advocate for Medical Aid in Dying (MAiD) laws in the state. Her journey of advocacy began with the profound and heart-wrenching experience of her sister, Jennifer, who passed away from ALS using the End-Of-Life Option (ELO) in California (EOLA). Jamie’s story is not just about loss but about the transformative power of choice and dignity at the end of life.

Jennifer, a vibrant soul and a compassionate first-grade teacher, was diagnosed with Bulbar ALS. Faced with a future of inevitable paralysis and suffocation, Jennifer chose to exercise her right under California’s ELOA. This decision stemmed from her fear of the “Locked-In Syndrome,” common in ALS’s final stages, where she would be completely paralyzed, unable to communicate, and trapped in isolation.

Jamie, alongside her husband, moved to California to assist in Jennifer’s care. They witnessed her steady decline, a painful contrast to her once lively spirit. Jennifer had clear goals: to dance at her son’s wedding, to enjoy her favorite ice cream, and to follow her beloved UCLA basketball team. Each day, she reevaluated what quality of life meant to her.

Despite her zest for life, Jennifer’s condition deteriorated rapidly. She fought hard, undergoing experimental treatments, including stem cell therapy. However, as her quality of life declined, she made the heart-wrenching decision to activate the ELOA process.

Jennifer’s journey was not just about her battle with ALS, but also about her desire to change the narrative around death. She wanted her loved ones to engage openly, to understand the depth of grief, and to find joy and meaning in embracing the inevitable. Her passing was meticulously planned and filled with moments of profound love and growth.

The day Jennifer chose to take the medication provided by the ELOA process was filled with a serene acceptance. Surrounded by her family, she peacefully passed away within minutes of taking the medication. This “beautiful passing,” as she envisioned, allowed her to avoid the worst stages of ALS and die with dignity and grace.

Jamie reflects that the California ELOA gave Jennifer control over her suffering, reshaping the conversation around death. It transformed a potentially terrifying end into a meaningful, loving farewell. Jennifer’s courage and dignity in navigating her dying process were a source of inspiration and a powerful lesson on the essence of life itself.

Jamie’s experience with her sister’s journey reinforces her belief in the right to choose one’s path at the end of life. It has fueled her advocacy for medical aid in dying (MAiD) in Georgia. She hopes to bring the same dignity and choice to Georgians facing terminal illnesses. Jamie’s story is a powerful testament to the importance of end-of-life choices and the need for compassionate laws that support individuals in their final journeys.Jamie