Sacred Choices in Dying and Living - A Mindful Approach to Dementia & Psychedelics

Thinking about how one dies has been a big contemplation recently. Up until now I have only one clear directive from Henry. If his condition living with Alzheimer’s gets to the point that he can no longer walk and has no or minimal cognition, he would like me to honor his access to die with dignity.

Henry expressed this about six months back when he was in assisted living for two months in Mexico. Seeing a few dozen people with advanced Alzheimer’s made this decision very easy for him to make.

That would be a scenario in which Henry would not be aware of the time leading up to his passing. It would imply a more advanced stage of Alzheimer’s, one that slowly slips into the inability to be present in the way we are used to. Is that what he wants? Or does Henry want to be fully present at the appointed time? Does he want to listen to his favorite inspiring chants? Have a delicious favorite meal? Would he want to include some other rituals or be sure to arrange certain things for the occasion or leading up to it?

If so, Henry would need to have his own ability to make these choices and to do so when his cognition is intact. Today, for the first time, I got a clear YES.

YES, Henry would, ideally, want to have enough cognition to choose when to leave his physical body.

He did express that he currently feels at peace emotionally, spiritually, and even physically (even with reduced mobility and endurance). He said there is still time to continue even though it might get harder to determine such contemplations in the future.

We are now in that slippery slope of dementia. Do you remember the book and then movie,  Still Alice? When first diagnosed with Alzheimer’s, she gathered a pile of pills. She put them safely in a drawer to have ready when she thought the time was right. She even left messages to herself to ensure she could access them. Yet, when the time came, she was past the ability to cognitively determine or even find her clues or the pills.

It is a slippery slope. When? How will he know? How will I know? What are some of the signs or symptoms? These questions and more will be our next area of mindful inquiry and contemplation.

I am glad we have come this far in our discussions while Henry’s truths can be expressed. We have had some deeply moving discussions around death, dying, and conscious dying and conscious living.

This took place most recently when I enrolled in a training through the Living/Dying Project , Healing at the Edge: Conscious Living, Conscious Dying. Led by RamDev Dale Borglum, an inspiring and iconic leader who took us through some beautiful practices to not only support the dying person to die consciously but also to be able to support one’s own practice of living consciously in the process. I write “us” because Henry was mesmerized when joining in while I watched the series of hour-long videos.

This course was reminiscent of my training with Roshi Joan Halifax in the early 2000s when she was training healthcare and hospice professionals in contemplative care of the dying. Her book, Being with Dying, shares a Buddhist perspective. The book was instrumental as a reference, inspiration, and teaching. I handed the book to each person that walked into the hospice room where my mother lay in her final days. I asked them to read the specific chapter that explains the dissolution of each element. It was a sacred experience as I recall the amazement and wonder of witnessing how each bodily function does, indeed, begin to leave the body. The heat and warmth of the heart being the last.

There are many ways to choose to die but most people do not want to talk about it. When faced with a fatal diagnosis or one of dementia, decisions can be made ahead of time. I would think that if the person can curate and express what they want, it would be a source of empowerment through the process. This was the case with Henry. After a few years of contemplation, digging deep into his own heart, conversations with me and others he loves, as well as learning about medical aid in dying and watching videos, he signed up with DIGNITAS.

Are you allowed to access Medical Aid In Dying (MAID) where you live? In Vermont it is also known as Act 39. Under this legal right, the person self-administers their dose. Therefore, under Act 39, the person has to be of sound mind to access their right to medical aid in dying. This excludes anyone with dementia.

That means Henry, with an Alzheimer’s diagnosis, cannot access his right to die in the U.S. However, people from other states who are eligible under Act 39 are legally allowed to come to Vermont to access MAID. Within three to four hours to both New York City and Boston, southern Vermont has groups that are set up to support this transition.

I just got off the phone with a gentleman in his mid-forties whose father accessed MAID. Suffering from MS allowed his father to access his right to die with medical aid. As part of the process, the compounded formula can be given to the patient to keep at their residence. As in the case of this father, he held on to the medication but was “stuck to make a decision.” Though quite different circumstances, I think Henry is also not sure of how to make the decision. How does anyone make that decision?

Even the preliminary decision to consider MAID is monumental. As I alluded to above and have written about in a previous blog, knowing you can access MAID dramatically changes the nature of the progression of a health condition—be it physical or mental. From the moment Henry was eligible for MAID in Switzerland he was empowered to control the destiny of the unfolding journey. He was immensely relieved that he would not spend years wheelchair bound with advanced Alzheimer’s, being bathed and fed. So after crossing the decision of IF access to MAID or Death with Dignity is a possibility, then comes the next question WHEN?

Intertwined with the WHEN, there is the HOW I want to live? How do I want to prepare for death?

As I wrote about Henry’s BUFO experience and also how microdosing has been pivotal in Henry’s journey with Alzheimer’s, so too did this person’s father make some decisions leading up to and preparing for the WHEN. His HOW included the desire to have a high-dose journey.

The father had lived with years of treatment-resistant depression. He had done a series of ketamine sessions that were helpful. Yet the idea of a high-dose journey with psilocybin was attractive to him. Who can blame him? After all, high-dose journeys are getting a lot of attention in the media, including the popular series Nine Perfect Strangers with Nicole Kidman. There is also interest and even studies coming out of Harvard on high dose journeys before dying or  after a terminal diagnosis. It can potentially be a way of reconciling much in life and, as reported in the Johns Hopkins Psilocybin Research Project, it can be the single most significant experience in a lifetime. It can also help people be more at peace, less fearful of death, and more ready to accept the inevitable.

So in preparation for the high-dose journey, the father tapered off all his medication. Eventually, a decision was made that a high dose would be too difficult for his body. I want to chime in here and add that the allure of a high dose is not always the best for people who are nearing death, especially when considering certain conditions of physical and/or mental health. And this goes not just for people in this situation but for people in general. There are more gentle ways to approach a plant medicine experience such as a mini-retreat dose or a shorter-lived experience such as Bufo.

In the case of the father, instead of a high dose of magic mushrooms, he ended up taking a low dose of DMT. Specifically, this is a synthetic compound that is in a vape pen. DMT is similar but different to 5MeO-DMT found in BUFO.

Within minutes of the 15–20 minute experience, the father’s face dramatically changed. A more peaceful aura surrounded him. As he came out of his experience something had transformed. A reconciliation of sorts. A deep understanding beyond day-to-day rumination. A barrier had been crossed. A newness of other possibilities embodied.

After the effects had worn off, the son told me a palpable feeling of great confidence, hitherto not felt, had taken hold. Total clarity was present.

The next day when the father took the medicine to his lips, there was no wavering. That same great confidence and total clarity emanating from the father were felt by all who were present.

A more peaceful death for sure. A more resolved spirit of heart and mind. A passing that brought a sacredness to the transition. Not just in the moment but to live on.

A father’s legacy…now shared in these words. Hoping one father’s choices, available to so many, may open a window of hope for others. Approaching death, choosing the moment with confidence and clarity can be a possibility. It was one father’s journey but also a possible legacy for others to experience in their own, unique way.

- Lauren Alderfer, PhD.