Alzheimer’s. Memory Tests and Evaluations - A Mindful Approach to Dementia & Psychedelics

Henry had been asking to get an evaluation while we were here in Mexico, with the memory clinic right in the community and the approach so different from what his experience was in the United States. That was a grueling process we hoped never to repeat.

The first medical indication was an MRI in 2019 after Henry had hit his head on the tennis courts where we were living in Nosara, Costa Rica, falling unconscious just briefly. After immediate EMT care and the local doctor giving the green light that all was okay, we went home. Henry did not want to travel the 5 hours by car on bumpy roads to the capital, San José. That was where the nearest neurologist could perform an MRI at the time. It took several months for Henry to agree to make the trek. Part of the process is waiting for when the person is ready, especially in the first years when things are not so clear. I have since learned that being proactive in these beginning years is important for the caregiver as well.

At the hospital in San José, the imagery showed a brain with atrophy in most of the right hemisphere, and a considerable amount in the left. The doctor could not say if it was Alzheimer’s or not. This was the first medicalized indication of what lay ahead. Though I was not surprised, sharing the recording of the doctor’s results (with the doctor’s permission) helped relay the severity to the family in a neutral, medical way. What was astounding—and to this day remains to be—is that if Henry is well rested and has eaten well, he can carry on conversations and people even question if he has Alzheimer’s. I’ve learned from other caregivers that they have experienced the same thing, even to the point of a loved one carrying on in normal conversation even up to the time of death. Alzheimer’s is funny in that way. It shows up in ways others may not see. At the same time, as shown in the 60 Minutes exposé on dementia from several years ago, why some people with an equal amount of brain atrophy may barely function for daily needs while others seem far less affected remains a mystery.

We waited COVID out as the MRI results seeped in. We spent most of the time in our mini-retreat in a mountainous area of Costa Rica. It was a simple life, immersed in nature, swims in our very own private thermal pool, and a celestial river a few paces away from the natural thermal pool. Driving 20 minutes to get groceries once a week was done by me. I became the decision-maker for repairs and did the general oversight of the property. Silently, yet slowly but surely, I was becoming not just a full-time caregiver but also a single woman while still being a wife.

As post-COVID arrived, we began the arduous process of being active in the health care system in the US, which we had not accessed on a permanent basis in our adult lives. What a mess! What complications! We were used to making an appointment and seeing a doctor within a week, no matter where we lived in Latin America and the Indian subcontinent. The process took over one year. We had asked for the blood test now available to test for Alzheimer’s. We got pushback and never did get that test, even though we were willing to pay out of pocket. We wanted to build a relationship with Henry’s wonderful primary care physician, so we went the route she laid out. That route had to follow a prescribed path in order for Medicare to cover the tests and evaluations.

We drove over an hour for some tests, due to our rural location in Vermont. We had to leave a day early for the memory clinic, scramble to spend the night at a nearby hotel to avoid an ice storm in order to make it to the six-hour assessment. If we had canceled, we would have been rescheduled two or three months out. The experience itself was long and intimidating. Questions by the psychologist were invasive but revealing. Even I was interviewed separately in order to gather my observations. By the end of the afternoon, the neurologist did a few physical tests, looked at the newest MRI from a few months prior. She did not agree with the Dartmouth College doctor’s results. It was Alzheimer’s, she pronounced. She gave her reasons based on assessing people for over 30 years. A spinal puncture would be the next step.

Eight hours later, exhausted, we walked out of the memory clinic for the hour-plus drive home over the mountain road. We made a promise to each other we would never return. What did it matter? I felt like our souls had been ripped out. But we had a diagnosis. This was important in order to access services within the medical system.

The years before starting the medical assessment, I oftentimes wondered what it would matter to go the medical route. I still do. There is not much that can be done for Alzheimer’s, but it does help understand some of the guideposts along the way. People can seek out support groups, talk to others who are on a similar path, and read books.

I believe my foundation of mindfulness practice has been my go-to. It has given me the power to keep my heart open throughout this process and long journey. This is true no matter the challenge or what lies ahead. It has been a toolkit that has supported me thus far. For example, during the confusion of when the first signs became apparent, the quality of staying with the confusion—but with the understanding that everything is always changing, impermanent, that this confusion will also pass—kept me steady and unflinching. It was and is the same when waves of deep sorrow and grief come over me.

Then there’s the quality of loving-kindness. It has been a polestar on this journey. Am I acting out of loving-kindness? Are my words and actions kind and loving? And in the moments of sheer frustration, can I remain in a place of equanimity? Can I pause and choose how I will act? Forgiveness, as seen as part of loving-kindness, is also a quality that lets me wash away the behaviors I look back on that weren’t the most helpful—to me or to Henry. I am not proud when I look at long stretches of time, especially when I didn’t realize what was happening and I spoke out of frustration or felt deep resentment.

Self-compassion is another big one. I have heard His Holiness the XIV Dalai Lama say that you first need to be self-compassionate before helping others. In what ways am I ensuring that I am healthy and strong? That I am energized in ways that support my journey?

Ironically, coincidentally, or karmically, I started becoming an advocate for microdosing as the Alzheimer’s journey was unfolding. Bringing my decades of practice and  writing about mindfulness into the microdosing space was a natural invitation and calling. After several years, I designed a mindfulness framework applicable to micro to macro experiences. It can be used as a pedagogical tool, and I do hope it can be adapted and integrated into the many training programs that abound. As I write this post, the article Mindfulness: The Overlooked Foundation for Mental Health, part of a two-part series, was published in Psychedelic Pulse this past week. The second part outlines A Mindfulness Approach framework. It is out this week.

So now, several years later, Henry and I find ourselves in Mexico to ascertain if this community is a good fit in our journey. I am not sure why Henry has been asking to get another evaluation, but I have an inkling that Henry knows he is progressing out of early-stage Alzheimer’s. I am glad he is interested in finding out more. I don’t feel the need to push the conversation but rather let Henry take the lead on this. The psychologist is very approachable, kind, and connects in a way that is not stiff nor medicalized. The evaluation, we are told, will be around thirty minutes, maybe a little more. Obviously, it is not going to be as thorough as a 6–8-hour assessment; however, how much do you need to know to ascertain that Henry has progressed? I can see the signs. I get that we are headed into new territory.

The day arrives.

After breakfast, Henry asks, “What month is it?”

“April,” I answer.

“And the day of the week?” he asks.

“Tuesday,” I say.

“Well, you know I am about to go for the evaluation, so I want to know the month and day,” Henry announces like an eager student.

When he returns to the house about an hour later, he happily shares, “I did really well on the test! I knew most everything. The only thing I didn’t do well on was short-term memory.”

This was one of the most endearing moments. My heart just melted. The irony of Henry remembering the short-term memory evaluation was not lost on me.

- Lauren Alderfer, PhD.