Feeling Dementia

I've often heard that when a family member has dementia, everyone in the family has dementia. Not quite true. Being Romeo's caregiver, I often find that if I think like I don't know how to function in the world (how to sit down in a chair, how to get in a car, how to walk down the stairs)...if in my mind I go through each step to complete a task and then verbalize each step to Romeo one by one, each small step of the way, then maybe he'll be able to do it.

Not always. I have been known to quickly grab a chair to put under him as he lowers himself into thin air. We have spent 20+ minutes at a time trying to get him into the car. Once, descending three stairs to leave a restaurant, we became so tangled up together, as if we were teenagers playing a game of Twister, that Romeo summoned the wait staff to help. Thank goodness his mind was present, as my brain was occupied going through the details of how to talk him down.

We don't know why Romeo has dementia. His doctors tell us that his dementia is not due to frontal lobe epilepsy, or Alzheimer's disease, or his ever having had a stroke. During the last three and a half years, we have witnessed a significant, progressive decline in Romeo's cognitive functions. Dementia involves not only memory, but thought processes, reasoning, attention, language, and problem solving capabilities, as well as balance and motor skills. These days, Romeo requires nearly constant help and a whole lot of supervision.

At this point, Romeo exhibits all the signs of moderate dementia and most of the signs of severe dementia. If you're interested in knowing more, check out the Epigee Dementia page.

I've often asked Romeo what dementia looks and feels like to him. He has difficulty describing it. I can't imagine it, as most people can't imagine it...not really. But I was determined to find out what dementia feels like. I wanted to find out what Romeo experiences, what he lives with every moment. My search for an answer came in the form of this short video:

Family Caregiving and the Virtual Dementia Tour

What do you think? Would you like to live with dementia, with such limiting and disturbing distortions? Are you willing to experience virtual dementia, just for a few minutes? The thought that Romeo (and thousands of others) sees the world like this through the lens of dementia -- stumbles through life like this -- every moment of every day -- well, it nearly made me physically ill. I could barely finish watching the video. How could I live if I had dementia? I don't know how people with dementia wake up every morning and face the daylight simply to do it all over again, to know that it will only go down from here.

Understanding what Romeo sees, what he hears, what he perceives in his dementia has changed how I feel about him. I love him still -- no more and no less than before. But now there's something else. Now there's something that wasn't there before. Or maybe it was there all the time and I just noticed it. Or maybe I noticed it but forgot. How to describe it?

It envelopes me and overwhelms me, inspires and enlightens me. It permeates every cell in my body and carries me to the edge of knowing. I am in admiration, marvel, reverence. This man, Romeo, wanders through dementia with strength and bravery. He meets everything in life head on-- even his dementia. This Romeo is the radiance of the sun itself, the radiance of the lamp and the beacon. Illuminating himself, he soaks up the light and energy and reflects it back to everyone -- living or not. No exceptions. He is divinity itself, pure and graceful. I am in awe and wonder. How does one begin to thank the Universe, the Metaverse, for as rare a gift as that?