Impermanence - A Mindful Approach to Dementia & Psychedelics

Henry has moved into assisted living to make it possible for me to go to Toronto for one week. This will be a temporary situation; I’ll be back in a few weeks. At least that’s the game plan, but it may change.

My Canadian son-in-law told me a word that describes my situation. It’s actually a mathematical term: asymptotic. It refers to approaching something but never quite reaching it… like the goal post keeps changing. It has a quality of infinity to it. Yes, that is what is happening now. Trying to honor, respect, and affirm what is best and move in that direction while not knowing how that will unfold. Is this any different than the Buddhist concept of impermanence? It is a concept that has grounded me to lead a life that embraces each day with an ever-greater sense of gratitude and preciousness.

During COVID, I took an online retreat with the acclaimed American-born Tibetan Buddhist nun, Pema Chödrön, on living purposefully and dying fearlessly. She gave a traditional commentary on The Tibetan Book of the Dead and practical advice on how to apply its fundamental teachings to daily life and practice so that death is no longer viewed as an ending, but as another exploration and precious opportunity. In the retreat description, it includes this explanation: When most of us think about death (or the groundlessness of life itself), we feel sadness or anxiety in the face of such profound insecurity. By fearing death, we miss the countless opportunities in our everyday life for working with loss and change as vehicles for opening our hearts and minds.

During the retreat, I wrote the word IMPERMANENCE on post-its. The half-dozen post-its were placed all around: on a wall, a bathroom mirror, near the teapot, on a sliding glass door, on a trunk of a tree. The idea was to merge with this understanding in a lived way, not just in my head—to open my heart and mind to this way of being. Every moment: impermanent. Every moment: precious. Cultivating this practice, for me, has been a profoundly pivotal preparation for death. It is also a profound practice in embracing this very moment.

Asymptotic. My tech-savvy entrepreneurial son-in-law was sharing a relatable term for him, but a deeply mindfulness-based one for me. Whatever the actual word, the outcome has been to hold things lightly, to not be in control, to be grounded in the moment, and to have the trust and fortitude to embrace what unfolds. To live life with TRUST. Is this one of the blessings from this journey as a caregiver with a husband with dementia? If so, it is humbly accepted with a deeply grateful heart. May I continue to cultivate this sense of trust.

Another blessing was to have the opportunity to stay with Henry in his assisted living accommodations for three nights and three days before my departure on Saturday. Each night as we got ready for bed, he asked for his microdose. It has always resulted in deep, undisturbed sleep. I hope he forgets about microdosing while I am gone, as I will not be leaving any mushrooms. Too complicated. Not yet legal in that venue. I am learning to let go.

We woke early that first morning, feeling the freshness of the day before the heat of the sun would take over. The birdsong greeted us as we stepped out to the patio. The chilly air brought us back inside as we lay on the bed, door open to the garden. We felt we were back at an ashram in India, where there is no clear line between outdoors and in. And just like India, in no time, someone was knocking at the door and then walked right in.

The caregiver brought Henry’s medicine to take (just a few basic meds like BP pills from the US).

Relief for me as I thought, “Oh, I don’t have to be the one thinking about this anymore. First it’s sorting the pills, then giving them to Henry, then following up if he has taken them.”

Twenty minutes later another caregiver brings breakfast. Henry’s favorite: plain yogurt, blueberries, raspberries, granola, and honey.

Relief for me as I thought, “Oh, I don’t have to be the one thinking about this anymore.”

Then an hour later someone knocks on the door, takes a pace inside the room, and asks Henry if he’d like to join the yoga class that just started in the garden. We can see from the patio that people are gathering in the garden area below. Henry says no. I nudge by asking if he’s sure. Why not? I’ll give it a try, Henry decides.

For the next forty-five minutes, I sit on the patio writing on my laptop as I watch the yoga class. It is my first glimpse into this world. I feel like a fly on the wall. About fifteen people are sitting below a canopy, all in chairs. A few people, closest to the instructor, are in their wheelchairs.

The instructor’s voice is soft and friendly. Suggestions more than commands. Everyone follows her—that is to say, everyone in their own way. Her head leans forward, someone else’s leans to the side. The person in the chair beside that person leans a different way. Someone doesn’t lean their head at all. Then the instructor brings her feet forward and sways her upper body forward and then to the back of the chair. All sorts of variations of this can be seen by those participating, including Henry. He loosely follows the instructor’s cues. It hits me hard that this is the perfect yoga class for Henry.

Watching, as I do, for another half hour invited me into a world that I was not privy to beforehand. I see that there is a sense of community, a bond that has been formed. Henry seems to melt right into it. There is minimal talking, maybe none at all; but instead, there is a sense of calm and an atmosphere of much peace.

Yes, this is where Henry fits in. It is almost like a protective shield from the big bad world has created a bubble. Within this bubble is care, tenderness, playfulness, and a sense of well-being. Henry returns to the room saying he quite enjoyed the yoga class. Relief. Happiness. Deep sadness. Impermanence. Letting go.

Letting go of preconceptions continued over the next three days. My attitude that people with advanced dementia were put away, forced to follow timed activities or strict protocols in an institution behind locked wings of buildings—as I have heard from nurses who are friends—was what I thought inevitable for most people as Alzheimer’s advanced.

What I witnessed now changed my attitude about what is possible. Instead, my heart broke open, preconceptions dissolved. There before me was a community—whether walking in the garden, going to where people gathered to sit, or during an activity in the garden (some following, others on chairs or in wheelchairs sitting in the afternoon air). Yet it was a veritable community that had been formed. Words did not need to be exchanged, yet the connection—a palpable connection—could be felt amongst the residents (I was told resident is the correct term, not patient).

What a gift I was given: to experience and be a part of this reality, albeit as an observer. A reality where several dozen people live in community with care and tenderness, true TLC, showed me what is possible. It also helped me realize that this is actually where Henry fits in best.

I was told that Henry was now entering the most difficult stage. The moderate stage of Alzheimer’s—being confusing, knowing that there is confusion but confused about the confusion—can be troubling. I was told by the person in charge that this is also the hardest stage for loved ones: spouses, children, family members, and close friends. For the person, it is important that they have a routine and have activities to give focus, according to the person in charge.

Hmm. What is better? To be in the quietude and privacy, or for Henry to be in this assisted living environment where he can continue with activities he enjoys such as daily swims in the thermal pool, yoga, and PT? According to the person in charge, this will help Henry through this period of Alzheimer’s.

Henry, a quiet, gentle, peaceful man with a positive attitude, asked me to be sure this next stage is one that has fewer distractions. He wants to actively prepare for his trip to India and our sacred agreement, his last wish, by ensuring more silence, more meditation, and readings from the spiritual masters.
Lots to contemplate. Asymptotic. Impermanence. The unfolding journey.

- Lauren Alderfer, PhD.