Barbara’s father Paul Schaefer.

Following hospitalization for a persistent urinary tract infection, my 80-year-old father was able to return home in May of 2020. We were very fortunate that he could come home. That was always his wish and desire. Upon return, he had an appointment with a visiting nurse to discuss his plan of care. She recommended occupational, physical and speech therapy and also presented the option of hospice. Realizing he wasn’t interested in the futile uphill battle, he elected hospice care, and he asked me to stay and care for him and to assist and manage my mother with early-stage dementia.

Before Dad shared his decision to enroll in hospice, he asked me for his wedding ring, which he hadn’t worn in many years. It was a sign to me that he thought he was nearing the end and that he wanted to be wearing it when he passed. I called my brother and sister, who both live in different states, to come. He soon shared, “I’m done here and I’m ready to go.” 

Dad enrolled in hospice the next day. Over the six weeks as he was dying of Parkinson’s disease, he needed 24-hour care – personal care assistance, medication every four hours and positional adjustment every two hours. Fortunately, we had excellent support from hospice as well as personal aides, covered by long-term care insurance.

Our family was able to convene and support Dad despite the pandemic, but it was still extraordinarily challenging and heartbreaking to assist, to experience and to witness. Dad was an adventurer and had been a very active guy all of his life. He played basketball and sea kayaked into his mid 70s. He was brilliant, and as a research entomologist and expert on Asian gypsy moths and other woodland and farm pests, his work took him to Japan, Thailand, Korea and China. He was one of the first scientists to get access into China as it opened up. 

It was hard for him to go from mostly independent and unusually strong for his age to being dependent for his everyday basic needs, and it was crushing for us to witness his decline. He was struggling with his gait, losing his balance and endured some falls, and he suffered from headaches when he was upright for more than just a few minutes. As a result, he was more and more limited to his bed. He was in considerable pain, was losing his ability to swallow and was suffering from awful choking/coughing fits. His losses stripped him of his agency and his peace.

At one point he asked me point-blank, “How long is this going to take?” I had no answer, but keenly heard his true desire: he was fully prepared to die and just wanted it all to be over. It broke my heart. I wondered if he was going to ask me to help speed things up in some way. Thankfully, he never did. I would have struggled to not support him in that way.

If Dad had had medical aid in dying as an option, based on the conversations we had shared over the past decade and the frustration he experienced in his last weeks, I’m quite certain he would have elected it. The option would have put his mind at ease.

I know now that it is essential for me to have this option available at some point in the future. Knowing that the nearby state of Maine has medical aid in dying available, my husband and I have already discussed relocating in the years to come. Both of us are committed to avoiding the suffering my father was forced to endure.