[Editor’s Note: Maryann Zeliznak’s virtual dementia tour is shared in the following “letter” that she wrote afterward to capture her feelings. It provides an insightful look into the world of those living with dementia, which affects not only mental capabilities, but also the senses.]
Dear Armchair Travelers,
Today I visited a facility that cares for the elderly. Not exactly sure if it’s a nursing home. I think not. It’s just a place where elderly people live in their own rooms, but still, other people are watching out for them. A while back, I had registered to participate in their virtual dementia tour.
It was a fantastic, but not all that pleasant, experience. I had no clue. Still Alice (the movie), was good, but didn’t show you how IT FEELS. I’ve seen other similar movies, that also didn’t depict how IT FEELS – to be the one suffering from the daily dreads of dementia. I had no idea what my mom, Uncle Steve and Grandma Zubal went through. It’s way, way, way, way more, than MERELY (and certainly don’t take that word lightly) losing one’s marbles.
The staff gave me goggles to wear, with the centers blacked out, to simulate macular degeneration. They put plastic gloves on my hands, and then over-size gardening gloves on top of those to minimize my sense of touch. They made me take off my shoes and wear inserts that stabbed me like thumbtacks. They even put headphones on me with rustling noises, mumbling, mumbling and more mumbling and occasional distant sirens blaring (which scared the bejeezus out of me).
Then I was given three directives and left to suffice for myself in a small semi-dark room. The small room was furnished with a twin bed, sofa, tables and closet. They told me to fold a towel, write a letter to a family member and put it in an envelope, and to put on a necktie. I was so disoriented just from barely being able to see that I could barely remember the directives. One at a time, I sifted through a small pile of clothing – socks, sheets and pillow cases. It was not an easy task, with limited vision and two pairs of gloves on. I found the big towel in the heap of clothing on the bed and could barely fold it, with my temporary limited vision and bulky fingers with no sensitivity. I could hardly find the corners of the towel.
Through the corner of my eye, I saw paper and envelopes on a table across the room. I could barely see to write and certainly could not see what I wrote. I could barely write a short paragraph and certainly could not re-read it to check anything. I saw ink on the paper, but in no way could I make out individual letters or words. Thus if one was distracted by the door bell or phone call, one could never get back to writing the letter, as one would not be able to re-read what was previously written. It was not easy putting the paper in the envelope either.
I could barely see the clothing hanging on the rack, but I did find a necktie.
By the time I spent the longest 10 minutes of my life roaming about doing these daily chores as a virtual dementia patient, my feet were killing me from the feel of walking on thumbtacks. This free-to-the-public experience is intended for caretakers, but I wanted the firsthand experience, as dementia runs in my family.
So, dementia is not MERELY losing one’s marbles. It’s accompanied very often by hearing loss/distortion, intense vision problems, loss of feeling in the extremities or more intensified prickling feelings in the extremities. What an experience!!