Celia Morris

Celia shared her story in August of 2024.

Bob and I met during our college days. I was a year ahead of him, and our first real interaction happened while we were setting up for the Christmas dance. I had seen him around, and apparently he had noticed me too — he recalled me wearing a peasant blouse during an all-school getaway before the academic year began. But it wasn’t until a fateful evening when he asked his resident advisor to take him to see Kind Hearts and Coronets downtown that our paths truly crossed. Bless his resident advisor’s heart for saying, “Yes, but let’s go pick up my girlfriend and her roommate, Celia.” So they came and picked me up, and the rest is history.

As the years went by, the need for end-of-life planning became more pressing with Bob’s diagnosis of a rare muscle-wasting condition called sporadic inclusion body myositis (sIBM), which, while sparing his mind, progressively weakened his body, especially the muscles needed for walking and swallowing. He knew early on what his future held. Soon after Bob’s diagnosis, we used Compassion & Choices’ end-of-life planning guides to discuss our thoughts and desires given different scenarios we might encounter, including our adult daughters in the conversation.

Among those planning guides was Compassion & Choices’ Dementia Values and Priorities Tool, where one of the prompts asked for a yes or no answer to: “If I appear to no longer desire food or drink (turn my head away, spit food out, do not open my mouth) then I request all food and drink be stopped.” Bob made it clear that when he could no longer swallow, he did not want to be kept alive by artificial means — no feeding tubes, no life support. He was adamant about this.

Thankfully we had those conversations early, and they became crucial when Bob began to show early signs of Alzheimer’s. It wasn’t severe enough to alarm us, but it made our decisions and conversations even more imperative.

When the time came, we had a collective understanding of Bob’s wishes, and we had all agreed in advance to support him. Bob had reached a point where eating was no longer possible. Our daughters and I decided it was time to implement his wishes and discontinue prompting him to take in nutrition, and let his body shut down naturally. 

Bob passed away about a week later in what was the most peaceful, perfect way. He wasn’t in discomfort, no difficulties. Bob just faded away. You can’t ask for anything better than that for a life well-lived.

What surprised us later was learning that Bob had advanced Alzheimer’s. His doctors hadn’t detected it, but when his body was donated for research (as Bob had requested), they found significant signs of the disease.

The fact that we had used Compassion & Choices’ resources to discuss options, document Bob’s wishes and involve our daughters meant that when the time came, we simply implemented his wishes. It was not a difficult decision. We were sad, of course, but we honored his guidance. Knowing later that he died with advanced Alzheimer’s, I realized how fortunate we were to have had those conversations early. Had we not had those early conversations, had we waited until Alzheimer’s took more of a toll, we might have questioned his wishes.

Reflecting on the peace of mind our family garnered, I recommend that everyone use Compassion & Choices’ planning guide. And include those closest to you in your end-of-life discussions — maybe not in the decision-making process if that’s not what you want, but definitely let them know what your decisions are. Get everybody on board so that there’s no scrambling if and when a crisis demands decisions be made. It’s also not just about writing down your wishes; it’s about revisiting them as life changes and making sure your doctors and loved ones stay up to date with your decisions.

For me planning is about choosing life — choosing how to live it fully and, when the time comes, how to let it go. I believe strongly in the power of choice, and that extends to the end of life. It’s critical that we maintain a choice in all aspects of our life to the extent that it’s possible. In a world where our personal choices are increasingly threatened, holding on to that autonomy is more important than ever.