Preparing to Die….or not. At Least Not so Soon - A Mindful Approach to Dementia & Psychedelics

It is October, fall foliage in Vermont. The leaves are at their full height of brilliant colors. On sunny days, which we have had for months now, the heavenly majesty of nature is surreal. But yesterday was the first day of constant rain, a chill in the air.

Darkness now sets in the early evening, just as it is still pitch black when Henry stirs in bed at 5:00 A.M. after a good night’s sleep. I, too, am waking up under the coziness of the billowy winter quilt as his hands interlock with mine.

I am somewhat vigilant when Henry rises in bed—no matter the time. There have been spells when he gets up in the middle of the night wanting to go to the bathroom but walks towards another room or worse, to the sliding glass door to the outdoors. Recently he has gotten up and returned to bed effortlessly.

So in the darkness of this morning, as our hands feel each other’s presence, there is a stillness of deep peace. In a quiet, calm voice, Henry’s quintessential manner, the words come out, “I am disorientated. I know where I am but this time seems different.”

A few seconds pass, “It is time to go. I am ready,” he adds.

The sacredness of Henry’s heart’s truth is immediately received into my heart. I, too, know this is his truth to accept and honor.

We sit in the shared, loving silence, each other’s presence crystalline in love, peace, a grounding knowing. All is well.

He explains that this feeling of disorientation, that he cannot put into words, is an insight of what is already happening and a knowledge that it will increase. To me, it is a miracle that Henry has enough self-awareness to name without naming this experience, this disorientation that he isn’t able to describe. It is a not being able to tether his mind—to be present, to be cognizant in the familiar. “It is time to choose a date to die,” he calmly states.

“I am very much at peace,” Henry says. I also know this to be true. As I wrote in last week’s blog, I witness Henry going into peaceful states of meditation or other worldliness. He moves with an aura of ease and grace. His days, now homebound but with the freedom of being totally surrounded in nature—we sit on 30 acres of a land trust of meadows, forests, ponds, and streams with a view from wherever you are inside the house of several ranges with a 50-mile view, no house in sight—is an ideal environment for a man whose spirit is so intertwined with the natural world.

Henry’s first five years were on a farm in Pennsylvania, a few miles away from neighbors. His Mennonite grandparents, who dressed in the traditional way, lived in the small cottage next to their house. Henry recounts the silent days he spent with his grandfather, scythe in hand, as they walked the fields. His happiest memories. Silence always being golden to Henry. An inner world already nourished from infancy.

His Mennonite forefathers, Altdörfers, hailed from the Zurich, Switzerland area. They left Europe to be able to practice in the Mennonite way, arriving in the New World in the 1700s. Who would have guessed that this plays a part in this important decision around dying? For as our gentle conversation proceeds to the when and where and how of a graceful exit, back to Switzerland, through DIGNITAS and the legal access to die with dignity, pulls Henry in a comforting way.

It seems inhumane that Henry cannot stay just where he is. Henry stated that to remain in his own home would be the ideal choice. Not only is he at peace in his surroundings, it seems absurd that someone with Alzheimer’s is forced to leave their comfort zone and travel (very disorienting), go to an unfamiliar surrounding (very disorienting), to access their right to die. As I wrote in a previous post, Act 39, the MAID law in Vermont cannot apply to Henry as it is currently written. If he were to stay in Vermont, he would have two choices. Neither is feasible in our eyes.

The first choice is that Henry could stop eating and drinking, otherwise known as VSED—Voluntarily Stopping Eating and Drinking. In VSED, an adult who is capable of making the decision voluntarily chooses to stop taking food and drink as a means of hastening death. According to the Vermont Ethics Network, while not without controversy, VSED is ethically and legally consistent with the right to refuse unwanted care. Indeed, this is a process of death many choose. A friend’s sister, who had terminal cancer, chose this route. It is reported that it is not as difficult as it sounds. Though in her case, rather than the typical 10 days or so it takes to pass, though in a calm state, it took close to a month. The compelling movie The Last Ecstatic Days documents a young man with terminal cancer making this choice. Henry said he would consider this option. I was actually surprised but now committed to learning more about VSED to honor Henry’s possible choice. If, however, it puts me at legal risk, I would not be willing to support this choice.

The second choice for Henry to die in his own home in Vermont is to amass medications, take them, and die that way. Is this not far-fetched? As absurd as this sounds, a caregiver friend and her husband with Alzheimer’s tried just that. How many people do? For the last two years, they had collected enough barbiturates so that when he made the choice that it was time, she would honor his choice for what they called “the boat ride” to carry him away.

It was to be, literally, a boat ride off the coast of Florida where they lived. When the time was nearing, she decided being in a boat would not be a good idea, but on the beach by the Atlantic Ocean would be the next best choice. The month previous to their beach date was one of their most glorious. She said with great enthusiasm that theirs had been a true love story. Having met a little later in life, their time together was magical. He did not want to fade away in a memory care unit nor have his still young wife take on the responsibilities of years of caring for someone with advanced Alzheimer’s.

So on the appointed day, they waited until the early evening. They brought all their paraphernalia and had the sweetest, heart-filled goodbye. As he lay down, the drugs taking effect, she said there was a joy and peacefulness that all was complete. She was happy that his wishes were being honored. She was also careful not to assist in any way. She did, however, confide in me later that she was willing to go to jail for a few years if she had been found guilty of being an accomplice. She explained, “It would be worth the sacrifice so that he would not have to live in a way he was adamant about not wanting.”

The moon rose high above, the lapping waves just beyond the sandy shore as she lay by his side protecting him from being seen. Minutes turned into hours, hours turned into deep night. And as the hours ticked away, his breathing still evident, she was aghast. They had hatched such a good plan. They were so settled with it, the timing right.

Disappointingly or miraculously—who’s to say—he lived through ingesting an intolerable amount of medication that would have killed the proverbial horse. Today he is now in a full-time memory care unit, his wife hundreds of miles away. Is this how the story—a real-life story being lived—is supposed to end?

How will our story end?

Henry has a plan for the “how,” but it may change. The next big question Henry asked was, “When?”

From deep in the gut came out, “Earlier, not later,” from Henry himself.

We were both astounded at the way a voice beyond a voice had made itself known. A little taken aback, but in a way that stills the heart because something greater than you made itself known, Henry reflected, “That feels right.”

What does earlier mean? If there were no considerations, Henry said ideally in a few days, at home. But since that is not possible, then what are the considerations? What would get in the way of our loved ones? Our daughter’s 40th birthday—with an international group of friends gathering in January to celebrate with her. Okay, so sometime after that? Yes.

Late February was the date we were to go to Mexico (when a lease on a house begins). Henry settles on a timeline, “Switzerland will be the destination instead.”

We already sense this will be a miraculous time for us. A sacred, precious gift given. The busyness of summer ended, the quietude of winter upon us. Everything has its season, and even this physical form gets shed.

It is now two days later as I reread what has been put down in words. It is a momentous step in this unfolding journey. I have realized that the sacred agreement to go to India and support Henry’s deep desire to be at the sacred cave where Henry has made pilgrimages and reached deep states of bliss is unlikely to happen. My heart’s intent was committed but, interestingly enough, Henry’s grasp on that had naturally loosened over the past few months. At one point he even verbalized that the trip was no longer needed.

So today, as we both woke well before the sunrise, moving into meditation in the quiet stillness of the dark, we were both imbibed in the inner silence that brings its loving presence. The brilliance of the day’s awakening, especially after the light of dawn moved over the mountains and I stood outside in the gusts of autumn winds, the interconnectedness of life—here and beyond—felt humbling. Both inner and outer peacefulness, that all is well, exuded its inborn nature.

After morning tea, I read this post to Henry. He suggests a few edits, which I make. We then talk about the timing and how to proceed. I realize what great strength and courage it takes for someone with Alzheimer’s to have these discussions in the first place and to bring real clarity to one’s wishes (which we have done periodically through this journey—a must!). We do reach clarity at this crossroads in the journey (as noted below) while reiterating, as we have continuously done at each step, to hold everything lightly, always open to the possibility of change and the unknowing of what will unfold ahead.

More than an agreement; as that word doesn’t feel right, it is an honoring—an honoring of what is Henry’s truth and clarity of the heart. But I will note it as an agreement since I agree to honor his wishes. Writing it down as such also gives a point of reference. It can also be shared with loved ones in a more neutral and accepting way. Important to note is that this particular blog, though written in real time, will not get published until it is shared first with our daughters and family.

Agreement: Preparing to Die with Dignity

Henry is ready to access his right to die.

Henry plans to do so through DIGNITAS, in Switzerland, though his preference is to access this right at home in Vermont, and Lauren is looking into this possibility.

Henry wants to access this right within a few months.

The next few months will give time to sit with this possibility and process as well as prepare.

All is held lightly and open to change.

Henry trusts Lauren, as the person that knows him best, to hold space for this unfolding journey.

Lauren will support Henry to make his choice when he still has ‘enough’ cognition.

Henry will share his intentions in the next few weeks with our daughters.

It has been five days since putting in writing the Agreement: Preparing to Die with Dignity.

This morning we had a most amazing sharing with our two daughters. The main part of our discussion was actually about an alternative therapy that Henry had received a few days ago—after Henry and I had written the Agreement. Our Vermont daughter had recently begun biomagnetic pair therapy. She wanted her dad to give it a try and took him for an initial session. Henry is very positive about possible improvement and open-minded about seeing if it can reverse symptoms or slow down the progression. A certain hopefulness feels uplifting.

At the same time, Henry shares what has been on his heart and mind about a possible transition. He discusses being ready to make a decision in the not-too-distant future. His words, spoken with a calmness of the peace he feels, are given open space for deep listening. I pay tribute to our daughters and their openness of heart and spirit, embracing this larger picture of possibilities. Especially because they are daughters—it is their father. A deeply loving relationship, they are understanding and supportive of their father’s choice. This certainly paves an easier path. I am grateful it is so.

Adding to this sense of possibilities, as the conversation was coming to closure, Henry mentioned how he wants to continue microdosing. In fact, he called it palliative microdosing. That is exactly what it’s been: microdosing psilocybin doesn’t stop Alzheimer’s, but it has certainly smoothed the path for Henry. He also reiterated his interest in a higher dose. We reviewed that a high dose of ibogaine might be the best match for brain health. Our ibogaine guy in Costa Rica said that he would come to Mexico next spring. He said people with various health conditions, including the level of Alzheimer’s Henry is currently experiencing, have their symptoms improve by 30%. Henry expressed much interest if he decides to go to Mexico.

When we were about to go off ZOOM, Henry was asked if February felt too soon. “Yes,” he immediately responded. A date in February hangs more lightly.

So I juxtapose this peacefulness with hope and hold the two as one.

We let go of a firm date. Now the four of us hold the possibilities lightly:

Preparing to Die….or not, at least not so soon.

- Lauren Alderfer, PhD.