Further Thought on VSED - A Mindful Approach to Dementia & Psychedelics

After having an intense but beautiful agreement with Henry around Henry’s wishes to possibly have a graceful exit, as part of the agreement, I learned more about VSED – Voluntarily Stopping Eating and Drinking. I even reached out to Compassion and Choices, an organization that has a pro bono legal service. I reached out with my concerns.

I learned that in every jurisdiction where MAID (medical aid in dying) is legal in the US, the person has to have the capacity at the time to self-ingest. This is a built-in safeguard in the law. It became clear to me that even though people with Alzheimer’s may not have this capacity, these laws were hard fought. There is much interest in not challenging them. It was clear in my conversation on the phone, representing a national level where MAID is legal. It was also apparent in my many conversations with people in my state of Vermont. I spoke with a dozen people about the current law, ACT 39, that allows MAID. Leave it for now; challenging it may take away that right, which was so hard fought.

Then I learned more about VSED in my conversation. The legality of it, plus the common practice of choosing VSED, became apparent. An updated set of information was sent to me. Two books had arrived. Henry expressed a commitment to make this choice.

During this time Henry resurfaced a book he had read years before. Graceful Exits is a collection of death stories of great teachers, masters, and saints from India, China, and Japan. A few of them included accounts in which the person refused to eat. It was clear that there was a knowing that their time was complete. Reading this reaffirmed the feeling Henry has inside himself.

It was somewhat revelatory thus, since there is still a subtle narrative of, “This is your karma that you should live.” Yet, here were saints in India who also chose the path of VSED. In fact, we learned that this was the case of beloved Sri Anandamayi, whose ashram we visited when first arriving in India in the 1990s, and a favorite saint whom Henry reveres. She is a female saint that Paramahansa Yogananda featured in his book Autobiography of a Yogi. Her closest circle of devotees who took care of her begged her to take food for several weeks. She declined.

Her story and others were a pivotal shift to understand that VSED has been used for centuries. It can be, as it seems in these saints’ cases, a testament to being at peace, knowing your mission has been accomplished, and choosing a graceful exit. At least reading these accounts brought this sense of understanding of life, and now his, in this light. It was revelatory!

Henry has redone his advanced directive. He has completed a dementia advanced directive. He may start reading the books on VSED. He has had one more experience of knowing he was in some kind of void that is a precursor to the next stage of Alzheimer’s. He is hopeful about many things in the future, including our planned arrival to Mexico in a few months. As one of my daughters said, it all depends on his level of cognition. Yes, this is an open journey, but we now have some clearer parameters for choice-making.

And choice-making is a big part of the picture. When Henry seemed to have settled into a choice that his time was nearing, he seemed very much at peace. Since then, now several weeks later, he is thinking of things into the future. His confusion of everyday things is growing. His self-awareness of getting confused is acute at times and brings waves of frustration and sadness to him. It may seem odd to contemplate that the length of time with more confusion feels disjointed, while the more peaceful nature in which Henry expressed a plan for a graceful exit would have cocooned the next few months into preparing for that in a sacred atmosphere.

All I have are questions: Holding on to more time? Being present for those around him, like his grandchildren who adore him? His daughters who care so much for him? A wife that wants to honor what he wants?

There is no right answer. My hope is that the coming choices are those that nourish the deepest calling of the spirit. Clarity will come, but if we wait too long, that opportunity may be lost.

- Lauren Alderfer, PhD.