A Mindful Approach to Dementia & Psychedelics: Our Shared Journey Series - AGREEMENT #1: Independence (vs. Ego)
Today I would like to share our first “AGREEMENT,” written in 2022, before Henry was diagnosed with Alzheimer’s but with obvious signs of decline. This discussion was one of many ongoing discussions that continue to this day. We may not have these reflective exchanges every week, but we do have them often enough to keep capturing thoughts and ideas, feelings and emotions, as they become relevant to everyday life, as well as helping us both look to the future and try to be on the same page in our understanding and approach.
The reason I started writing down AGREEMENTS was so that I could immediately read back to Henry what we had discussed, get his affirmations and acknowledgment, and, of course, make any changes so that he was in total AGREEMENT with what I captured in words.
You may notice that the heading is: DHOM – Dementia From The Heart Of Mindfulness. Titled after my book, Teaching from the Heart of Mindfulness, it seemed natural to bring this same heart/mind approach to what was clearly becoming apparent. This illustrates that from the very beginning, we made a commitment to continue viewing life and accepting its challenges with the same heart/mind as we had been doing throughout our marriage—namely, with a heart of gratitude and through the lens of mindfulness.
DHOM – Dementia From The Heart Of Mindfulness, March 2022
AGREEMENT
Working Definition:
Independence – The ability to do something with ease and autonomy that causes no harm.
Ask the question: Can I do something independently?
The question will get three sources to answer (triangulation): oneself and two people who are loving community caregivers and have one’s best interests at heart.
Proceed: Trust and respect the majority answer and proceed with kindness and understanding.
These days, anything we discussed in relation to aging or dementia became our gateway to what lay ahead. Here is a review of today’s (in 2022) discussion and how we came to the above AGREEMENT.
Independence vs. Ego
Let’s try to look at independence along with the aspect of ego. How can we be independent without ego? Is it even possible? Is independence different in Western cultures compared to the more relationship-based societies of the East?
These were just some of the questions we contemplated this early spring morning as part of our commitment to being aware and present as partners in this journey. We had been sharing information, stories, and inspirational reflections from some of the books we had been reading on Alzheimer’s.
Having lived nearly 20 years on the Indian subcontinent, we had imbibed an Eastern perspective. We could easily flow between the Western upbringing we both had and the very different cultural worldview from the subcontinent—a richness of Hinduism, Buddhism, and Islam.
The books we had been reading were written by Westerners trying to embrace the journey of Alzheimer’s with a spouse or parent. The books were a great source of inspiration, especially because of the belief in four things:
To embrace what arises in our lives.
That we are blessed to have the journey we are on.
That there are many unfolding blessings in the process.
That the journey of dementia can bring one closer to the unity and sacredness of life and Self.
What also became apparent to both of us was that the lens was one of Westerners with a Western lifestyle trying to fit a different perspective into a box. In these books, for the person with Alzheimer’s, some of the biggest struggles came when they had to “give up” something they did. Commonly, this may be driving but also one’s profession or passion, such as teaching or fishing.
So why did not doing these things become such a source of angst, disappointment, or resistance?
Henry and I looked at some of these examples in our own lives and asked ourselves what our attitude and approach would be if we could no longer drive, teach, or pursue a favorite passion or hobby.
“What does independence mean to you?” I asked Henry.
“You have to separate independence from ego,” he answered without skipping a beat.
“Yes! This is at the heart of it. I’d like to hear more,” I said.
Our rich conversation led to our own working definition of independence:
Independence: The ability to do something with ease and autonomy that causes no harm.
Ability to do something – Usually an action but can also be in words or thoughts.
With Ease – Some things may start out as automatic or routine, but whatever it is, ease implies that effort is non-existent or minimal. At times, effort is required, and that can be seen as healthy stress, but when there is too much anxiousness or fear, it becomes unhealthy stress. There is no longer ease.
Autonomy – By oneself.
Causes No Harm – Harm cannot be caused to oneself or others. Harm covers physical, emotional, and spiritual aspects.
Losing the ability to do something with ease and autonomy that causes no harm seemed like a natural progression of dementia. So why so much conflict and inner turmoil around this phenomenon?
We talked further. Snippets of our conversation included the following understandings.
From an Eastern perspective:
It is not in the act itself but rather in the ego’s attachment—the need to be able to do something. That is the struggle. The ego does not want to give up that freedom.
Clearly, there is no inherent emotion or judgment in being able to do something autonomously with ease or not doing something. The turmoil arises from the ego’s emotional reaction to one’s own expectations, desires, attachments, or fixation on doing that thing.
From a Western perspective:
Independence, seen as individual freedom, is paramount to living successfully in North America. One of the biggest examples, held in supreme importance, is driving. Driving is the foundation for maintaining “freedom.” Countless stories abound of the struggle for an elderly person to give up driving.
What about following one’s passion? Surely that seems innocuous. Yet, looking deeper, following one’s passion is still riddled with desire, attachment, and therefore ego.
What about finding purpose in what one does? Again, with deeper insight, finding purpose is a treasure that can be found in every moment. It is attachment to the idea of what purpose should look like that attaches ego to it.
And what about service? Service is usually lauded as an important quality, but again, one’s idea of what service should look like can be fraught with ego, while the heart of being actively serviceful has the potential to be expressed in every interaction.
Henry and I realized we were further laying the foundation by articulating our beliefs and approach that would lead us through this gateway. Our journey would be a continuation of letting go. A natural letting go of the ego brings one to the threshold of the greater Self. In aging, with dementia, and in life—no matter what arises—this was a fundamental belief we both shared.
Now, moving forward, we can check our ego when asking if we are independent. Can we let go? Where is the ego? With grace, humility, and understanding, we hope we can cross the threshold of letting go as a natural process and sacred gift.
As I reread this before posting it as a blog, I see that we have not had to seek out triangulation or proceed to get a consensus. However, the question has been asked numerous times: Can I do something independently?
Bringing awareness for self-reflection is helpful, but moreover, the theme of independence versus ego has been a foundational piece that keeps resurfacing in our discussions. Perhaps the purpose this AGREEMENT serves is the fact that we clearly articulated our understanding, and that stuck deeply in our hearts. It has given us the language around letting go of ego in the day-to-day.
I will also note that this was written before Henry had Bufo (5-MeO-DMT), during which he experienced ego dissolution. Though Henry had ego dissolution experiences in his years of meditation, perhaps having this AGREEMENT helped prepare him for his transformational Bufo experience (which I mention in a previous blog).
All I know is—dementia helps question ego, and the less identification with it, the easier the journey.
- Lauren Alderfer, PhD.
