The Grief We Don't Talk About Enough

Peeking into Dementia Through a Virtual Tour

I was part of a small group that did what's called a virtual dementia tour, an in-person simulation designed to give a glimpse into the lived experience of those grappling with this often devastating disease. I looked on YouTube to see what some of the tours were like, and I knew that since this one was being offered through the hospice and palliative care facility that I've been volunteering with this year, I’d leave the experience with more education about the sobering realities of living and caregiving.

I don’t think I have the words to explain how that felt. Especially as my mind repeatedly called up some of my elders who suffered in some ways because they died before we understood that they were experiencing some wild shit called dementia.

Maybe I do have words for this, not full sentences, nothing clearly articulated, but I do have words.

trapped. angry. frustrated. annoyed. alone. like an inconvenience. dumb. like a bother. helpless. childlike. vulnerable af. like a gnat. like a lost puppy. embarrassed. did I say trapped? trapped.

After the paperwork part of the process, we were ushered into what they called the garb room. There, I was instructed and helped as I put things they gave me over my ears, eyes, hands, and inside my shoes. Whole thing felt like I was gearing up for some kind of hazmat situation. Then, I was walked down into a second room, where someone explained five sets of directions without repeating them, and then moved me into the behavioral room to carry out the instructions.

First, I was the only participant with one other facilitator in the room whose job was only to observe. A few minutes in, a second participant came in and was trying to carry out their set of instructions. The observing facilitator was someone with whom I was familiar, unlike the person in the garb room and the person who gave me the instructions. Because the observing facilitator was familiar to me, I found myself particularly frustrated, and even angry, at her for not being willing to offer me some help. I talked to myself out loud and squinted my eyes to try to zoom in on her face to gauge if she could hear me. I couldn’t tell. There was too much stimuli for me to focus. There were two distinct moments I remember feeling like I was just going to walk out of the room, grab my purse and my car keys, and leave that stupid-ass, triggering-ass, palm-sweat-inducin ass experience.

After some time in the behavioral room, another facilitator came in and walked me out of that room, and back to the garb room to take off all of my equipment. I was shaky and in tears. When we all debriefed from the session, there were almost no dry eyes found around that blonde wood conference table. And for most of us—I know this because we talked about it—the tears were partly because we realized more deeply what people we knew or loved had been going through. And we wished we had known so that we could have been…better. More patient. More... something.

I won’t go into more specifics of the experience because if you are interested, I recommend it, and I don't want to lessen your experience by telling you what to expect in details. Besides, me saying it and you experiencing it, damn sure ain't the same thing.

We basically conducted a grief circle as part of our debriefing and regrouping. They didn’t call it that, but I’m calling it that. We talked about what we would have done differently with our loved ones who are no longer here, and we talked about what we will be doing different for those who are still here. And for the type of volunteer work, and for some, career work, that they are doing as caregivers, medical professionals of various kinds, hospice workers of all forms, family and friends and loved ones, all of that.

This is yet another example of the type of non-body death, what I've come to call Kananápo, that we experience. It’s about the living, the thinking, the feeling, what's happening in our brains and our bodies. And though this is about a disease that is ultimately fatal, a lot of the grief is about what's happening while they're alive, and while we are alive to witness. It's not about the fact that they're about to be dead/ transitioned, but about what they are experiencing in life.

I poured into the "I let It Die" Grief Course to do six gatherings throughout Autumn and Winter, specifically with a focus on non-body death and the multiple ways that grief exists without a tether to physical death. The core purpose of the ILID Grief Course is to acknowledge and honor our diverse experiences with grief, and show rituals and tools to help us uncover more of the interconnectedness of life's transitions.

https://www.alz.org/help-support/caregiving