The Starting Point of A Mindful Approach to Dementia - A Mindful Approach to Dementia & Psychedelics

I wrote this a week before posting, knowing I would be in retreat and offline. I was reflecting that it is getting onto one year since beginning weekly posts. In reviewing this past year and what has been written, all with Henry’s permission and advocacy, I hope the blog helps change a bit of the narrative of how we walk through life. A motivation to post has been to share how mindfulness and its open-hearted nature of acceptance and holding all that is, is a path that continually opens possibilities. The mindful and reverent use of microdosing was our starting point, but now other psychedelics have also become part of the journey.

I hope this past year of blogs has been informative and educational on the benefits of plant medicine, especially in the elder years. As more plant medicine potential comes into our radar, I will be reporting on our experiences. With millions of baby boomers in their senior years, I hope these blogs can stand as a testament and a clarion call to re-envision aging.

The current cultural narrative around aging and dementia did not speak to me when we became aware of signs of dementia in early 2018 after Henry had taken a bad fall a few months previously. Not finding helpful resources, we committed ourselves to creating our own foundation of understanding for our journey ahead. The Agreements below could be considered our values and principles. Having rich discussions to be able to put into words and then note them as our agreement was, in itself, a powerful way to ensure our journey of dementia and caregiving was one that held deep meaning and a path we would walk mindfully.

Though I have just found the information archived in my various emails, I hope sharing them today can help as a starting point to a mindful approach to dementia.

Agreements

1. We acknowledge the timeless karmic bond we have with each other. We have a sacred understanding that this is our path, individually and as a couple.

2. Life is a karmic adventure — with an open heart, we can continually grow into wholeness, unity, and the sacred — individually and as a couple. Whatever appears, no matter how joyful or painful, are our teachers to become the greater Self.

3. We embrace what arises before us.

4. Cultivating kindness in all our understandings and interactions. Seva (altruistic action) in action.

5. Engage each other with Awareness about the journey we are now in and before us. EX: talk about our approaches, agreements, educate ourselves with friends, books, medical info.

6. Maintain respect for ourselves and each other.

7. We are multidimensional people — not exclusively patient, caregiver paradigm.

My notes from 2022 include the following five pillars. They helped determine what to consider in order for Henry to thrive the most. Of course, there are many resources available online, but for us, based on mindful observation and deep listening, we came to these five areas of concern.

The Five Pillars:

Cognitive ability fluctuates depending on these five pillars:

1. Ambience — safety, noise, ease vs. friction, familiarity vs. newness

2. Nutrition — energy level, well-fed or running on empty

3. Physicality — strength vs. depletion/stress, fatigue

4. Emotional — calm vs. anxious

5. Social — require varying degrees of engagement vs./until shut down/reached limit

We then combined them to come up with the acronym SNAP as a mnemonic device to best remember the pillars.

SNAP:

• Social-emotional

• Nutrition

• Ambience

• Physical

DIGNITY
Lastly, I want to share one of the defining pieces of advice I received. My oldest childhood friend lost her husband to early-onset Alzheimer’s four years ago. As one of her closest friends, I witnessed this journey and was a peripheral part of it.

She said to always keep your loved one’s dignity intact. In the beginning, there may be much confusion, repetition throughout the day, or conversing in a small group but not being accurate or making sense, as just a few examples. Rather than saying things like: “That doesn’t make sense,” or, “I already told you that,” or, “You said that three times!” — a more mindful and skillful reply (or no reply at all) should maintain and support the person’s dignity.

It dawned on me that I had written and archived quite a few ideas and ways of approaching the journey ahead that my heart friend might find helpful. In those first years, I did not find any inspiring resources that aligned with or supported stepping more mindfully from heart and mind onto the path. Instead, I tried to capture what Henry and I had been able to articulate as pillars and foundations of support that could hold the journey as a path of love and a path of ever-increasing wholeness, grounded in a way that could keep us steady from this inner compass as we proceeded.

I hope these notes, agreements, tenets, and other reflections ground you in your journey in a way that opens your heart and builds the capacity to hold it all in its fullness. It is my fervent hope that a narrative that embraces all that is can pave your path to be lighter and more mindful, opening the possibility for more tenderness and loving-kindness — for yourself, your loved one, and the circle of life.

In closing today’s writing, I want to acknowledge Henry’s steadiness of grace in this journey. It has fundamentally shifted my own fear of receiving a diagnosis of Alzheimer’s. What I have witnessed is the acceptance of a degenerative condition paving the way for the heart to turn inward and find peace. Embracing the fullness of the human experience with the wisdom and compassion to also embrace its ending, while still cognizant of this choice, will eventually be Henry’s graceful exit.

To me, this is Henry’s legacy. It will live on in me, in the essence of my being.

I hope our continued shared journey touches you in ways that cultivate greater well-being in yours. In that way, Henry’s advocacy to let his life be an offering will be another legacy.

- Lauren Alderfer, PhD.