The Nose Dive - A Mindful Approach to Dementia & Psychedelics
I am writing this blog entry from the emergency room in the hospital. My world has flipped upside down in these last seven days, a week ago being the first visit to the ER. Up until now, Henry’s decline had been slow and steady; this week he took a nose dive. His confusion, most likely heightened due to physical discomfort, has shaken the foundation of the world I had known.
Will the vestiges of the spirit that is my husband of close to 45 years ever return? Or will even more confusion cloud the veil? Hopefully this acute medical condition is temporary and will be cleared up. Wouldn’t it be nice to think he will bounce back? But even if he does, I see what is now before us.
The medical condition was compounded by Henry’s visit to the neurologist mid-week. It catapulted us into the next stage in the journey of Alzheimer’s. Now that Henry has a case worker from DIGNITAS, a recent record from the neurologist was needed. We assumed he would be assessing Henry’s capacity to make decisions about end-of-life (EOL). What we naively didn’t consider was that this included a half-hour intense conversation with specific questions. I asked permission from Henry and the doctor to record the most intense part of the conversation, which you can hear (with Henry’s permission here). The doctor articulated his role was to assess Henry; it was not to be for or against Henry’s stated choice. It became apparent to me that some of the most salient points to analyze are:
Does the person have capacity to make choices?
What is the person’s wish for EOL?
Is the person doing this for themselves?
Is the person being coerced?
Is anxiety and/or depression clouding the person’s choice?
As intense as the conversation was, we knew that the neurologist would write up an assessment that would give the green light to DIGNITAS. That was especially true when Henry was asked if he was doing this for someone else. Without skipping a beat, an emphatic “NO!” came from the depths of Henry’s being — a commitment that surprised even me.
If that wasn’t exhausting enough, Henry then took a series of cognitive tests. When he met me in the waiting room about a half hour later, his face said it all: total dejection mixed with shock and dismay. “I failed the memory tests,” he mumbled, head down; then something about not knowing some basic shapes.
We melted into each other’s arms. We had just crossed a threshold. Words were not necessary as we drove home in a shared quiet space of knowing. The next few hours passed as we both digested what had just transpired, its impact to our very cores. When Henry was ready to share his thoughts: “I will take the first available date from DIGNITAS, if they are booking 4–5 months out, and I’d like to share this with the girls (our two daughters) this weekend in a family meeting.”
Ironically, our ZOOM conversation was set up for this very moment — a moment when the monitors are beeping in the ER room, an IV with pain meds, antibiotics, and fluids are going into Henry, and lab tests are being run. The question lingers if this acute medical condition was brought on by the Alzheimer’s medication rivastigmine. His primary care physician said it is possible. The neurologist said this could be a rebound effect. Could this be the cause of the nose dive? We will never know, but what I do say is that microdosing does not carry this risk.
It is now hour six in the ER. The immediate takes precedent while we do our best to stay proactive in this unfolding journey. There will be communication with DIGNITAS in the coming week. Reports will be submitted, Henry’s status made clear, a possible date chosen.
Henry is now sleeping soundly, finally out of his feverish state and the most acute pain. I sit here writing, not knowing if he’ll be discharged or admitted to the hospital.
Thank you for sharing in this most vulnerable of places in this unfolding journey.
- Lauren Alderfer, PhD.
