A Mindful Approach to Dementia & Psychedelics: Our Shared Journey Series - How Do You Want to Die?

Choosing how to die is not usually the topic of conversation. However, contemplating death focuses the lens on how life is lived NOW. It is particularly compelling when there is a diagnosis of Alzheimer’s, as in my husband’s case. Years of cognitive and physical decline are the predictable outcome. The consequences of a death from Alzheimer’s sear the heart and soul.

As I wrote about in a previous blog, the concepts of the bardos not only impact how I see preparing for death, but they also inform how I live day to day. Mindful contemplation is at its root. For Henry, his years of meditation practice reap their rewards. When he does sink into his daily practices, inevitably nodding off to sleep, he comes back to the outside world, oftentimes commenting that he was just, “in such a beautiful place,” to quote his words. One’s mind, and the mind training through one’s contemplative, mindful, religious, philosophical beliefs, or otherwise, prepares the heart/mind for the inevitable.

What I am really referring to is physical death. I had the overriding “stigma” that we must live out the karma bestowed on us. So if someone spent years not communicating with the outside world or taking care of their bodily functions—the inevitable symptoms of advanced Alzheimer’s—it was their karma. Equally impactful, to follow the thinking, it is also the karma of the caregiver. My thinking around this has evolved.

The first shift came when a globally known intuit told me that many people with dementia are not as they appear. She explained that their soul or spirit (or whatever one calls it in their own tradition) has already left their bodies to differing degrees.

Is that what I witness when Henry seems to be in an entirely different world? He has actually been able to verbalize how beautiful it is—beyond this world of differences and judgment. His descriptions are remarkably similar to when he was coming back from his one psychedelic experience with Bufo, or 5-MeO-DMT, as it is known by its chemical component. Moreover, on these few occasions that have occurred in the last few months, there seems to be something palpably different in the way Henry speaks, moves, and appears—like an energetic shift that can be felt. He speaks of a great peace, beyond anything imaginable. Perhaps the intuit is right.

My husband has mentioned again and again that he never wants me to be in the position of what is required to care for someone in the advanced stage of Alzheimer’s. Nor would he want to drain all our resources. Nor would he want to live in such physical and mental decline, which can go on for years. When this became clear to him, we started to have more serious discussions around how to choose physical death.

We lived in New Delhi for over a decade and heard many stories from our Tibetan friends and colleagues of traditions from the homeland. The elderly gave their bodies up on high plateaus, much like in the Arctic, where an elderly member may walk out into the cold—a deep honoring that benefited the healthy survival of others.

During that time, Roshi Joan Halifax came to Delhi and gave a hospice training that I attended. The Buddhist concept of Bodhichitta—to walk the path of enlightenment for the benefit of others—was not new to me. But in the training, the questions of one’s choices as they relate to the death of one’s body became a deep contemplation. Can deciding to shorten your own physical life be an ultimate choice to benefit others?

Another shift in perspective is the changing cultural stigma around choosing death with dignity. The growing legalization of MAID—medical aid in dying—has helped me understand other ways to look at physical death. Last year, Henry joined me and watched several compelling videos of people choosing MAID. These videos were part of the End Of Life Doula (EOLD) certificate training through the University of Vermont. It was a powerful time that gave Henry and me the opportunity to have rich and intimate conversations around a variety of subjects related to death.

I am meeting people here in Mexico who have brought spouses with dementia to seek out continuing care options. These intimate conversations, times for resolution and peacemaking, are no longer possible. The simple question, “How do you want to die?” is too late to ask. Sadly, the caregivers express an unsettling feeling of not knowing their partners’ wishes. They seem to be struggling with how they themselves feel or what decision to make.

In Vermont, we do have MAID, but it does not pertain to dementia. In Canada, if you meet all the requirements, MAID may be an option if you have dementia. When we learned that Henry could be eligible for DIGNITAS—an organization that supports death with dignity in Switzerland—he immediately signed up.

Knowing he has made a choice that is comforting to him dramatically changes each unfolding moment. To know he will not spend years in a locked-up memory care unit inside a building is not part of his psyche. To know he will not spend years being fed, bathed, and clothed gives him great comfort now. To know that I, his spouse and partner of 40+ years, will not be a caregiver for what could be decades ahead brings peace to his heart. Knowing his career, which spanned nearly 50 years of hard-earned savings, will not evaporate to keep him alive in his inevitable condition is freeing.

Interestingly, only 3% of the people who sign up for DIGNITAS actually follow through. I understand why. Our own journey may be an example. When diagnosed in late 2023, the diagnosis confirmed the loss of control Henry was already feeling. Once Henry signed up for DIGNITAS, he felt he had a certain degree of control over his destiny. He also had immediate comfort knowing he has an exit strategy that feels settling and gives him a heart at peace.

We still have questions unanswered. When is the right time? How does that choice get determined? How long to wait before it is too late for Henry to make that choice? Am I willing to make the choice on his behalf if he is no longer able? Will other choices present themselves?

All I do know is that Henry’s decision completely changed—and continues to change—the present moment and the choices being made. Now that we are in Mexico and see the option of truly caring help in an environment that matches Henry’s well-being, he is open to possibilities here.

- Lauren Alderfer, PhD.