Dignity in Alzheimer’s - A Mindful Approach to Dementia & Psychedelics

I have shared that one of the best pieces of advice I had been given was to always uphold the person’s dignity. That mantra helped me through the early years — those years when your loved one is saying and doing strange things and you begin to lose trust in them. With upholding someone’s dignity, it lessens the reactivity of the negative qualities like accusations and anger at the person. Of course, I had my fair share, but the voice inside my head and heart to respect the person helped me stay connected in a way that helped the lifeline remain one of love and understanding when, after several years, it became clear the behavior was a result of dementia — not my husband’s intentional will or motivation.

Dignity looks different now. Its focus is more on the person’s physical needs. When to lend a hand, open a door, help with sitting or getting up. But this past week, in the commitment Henry placed in me to share his story and our story together, I have spared some details that protected his dignity. As we both look back on the medical events of the past few weeks, he has given permission to share more details of the realities of the Alzheimer’s experience of elderly men.

Microdosing was working as well. He was following the  Dementia Microdosing Protocol and following the  Dementia Microdosing Assessment; he was doing well, albeit still slowly declining. However, his primary care physician suggested Henry try one more medication, rivastigmine, in patch form. As mentioned in an earlier blog entry, he went off it around day 21 due to its negative effects. Two days later, after excruciating pain due to urine retention (perhaps a rebound effect from the rivastigmine, but yet to be determined), a catheter was inserted in the emergency room of the local hospital.

Dignity ………was Henry’s dignity impacted? Well, not between the two of us, but certainly beyond…..but in sharing our story it is important that a medical condition many elderly males face impacts them even more so with Alzheimer’s.

During the week that the catheter was put in, a urinary tract infection developed, accompanied by a fever. A second, much longer visit to the ER ensued. Leading up to that time, during that time, and after coming home, Henry’s disorientation grew, but was heightened due to the dementia. The worst ones: an inability to comprehend the mechanisms of a catheter or the mechanism to urinate; how or why there was so much pain; why no one, including those that loved him, were not helping (that was crushing); and the inability to calm himself down.

At the height of the infection, his disorientation was so great I felt useless to help and found myself beyond my capacity. If this is what it is going to be like, I could not sustain this alone. But the bigger question looming that gutted my heart was knowing he was beyond capacity to make his decision for end of life with DIGNITAS in Switzerland.

What I learned is that men, with Alzheimer’s or not, can reach a state of disorientation due to a urinary tract infection. What I have also learned is that someone with Alzheimer’s at my husband’s stage may not be able to comprehend what is happening, nor articulate what they are experiencing. Their behavior will hopefully return to their pre-infection state (but probably not quite as much), but I also feel that I have been given a glimpse into the future. I am not sure if my husband will comprehend this when he recovers. Or it may be that he doesn’t return to the pre-infection state.

As far as microdosing, as I do with the clients I coach, I try to keep one variable at a time. So while Henry was trying out a pharmaceutical, he was not microdosing. When he got off a pharmaceutical, I always gave a few days before restarting microdosing. I will do the same now. Beyond just being an immune booster, microdosing mushrooms helps Henry feel more himself and more energetic. I think it will be a support in his recovery.

Looking back at the intensity of the last week and what is still before me, I do know that mindfulness — an open heart of good will and as much kindness that is in me — can and do flourish. But as the nurse at the hospital said, “Compassion fatigue is real. You have to take care of yourself. Each person has to give in to make it work for both.” At the moments of feeling the situation was beyond my capacity, whatever I said and did supported Henry’s dignity. My words and acts and thoughts came from kind motivation. The awareness of not feeling capable of helping is very real. Much to contemplate, especially as the journey proceeds. Knowing, as the Buddha teaches, that everything is impermanent helps me put Henry’s disorientation into perspective. His struggle. Ultimately, it is his struggle. I can do my best to hold it all within the sphere of a loving presence, the pure motivation reaching his spirit.

Not being alone is another factor that has given much strength to my journey. My daughter who lives nearby happened to sleep over during some of the worst — helping in ways that helped her father soften his journey. Besides having the company, her presence gave me the chance to get some self-care. My daughter in Canada, concerned for the distance and shortening of time, plans to visit next week. Friends and neighbors have expressed enormous kindness and generosity of spirit. My heart breaks for those who find themselves alone during this time, just as equally my heart fills with gratitude for such much love and kindness supporting me.

- Lauren Alderfer, PhD.