Please wipe this mess off of my face. PleaseDon’t go so fast, I can’t swallow! I’m not ready for a drink yet.
Is this bite going to be hot or cold? Sweet or bitter? Pureed meat or pudding?
Please wipe my face!
Let me start at the beginning: A couple of weeks ago, I attended a training program at Bethany Homes, a care facility near my home. They make this sensitivity training program mandatory for their staff. Bethany uses a combination of "Dignity & Sensitivity: The Ultimate Boot Camp," from Gemini Consulting and the "Virtual Dementia Tour" (VDT), a program from Second Wind Dreams.
Because I am an elder care columnist, I volunteered to go through the training. When I arrived at my appointed time, I was excited and a bit stressed. I knew it wouldn’t be a picnic, but I also knew I wanted to have this experience.
So it began.
A woman in scrubs solemnly invited me into a room and asked me to sit down at a desk. There, I took a short test asking about my perceptions of dementia care and dementia sufferers, and signed a consent form. I felt a marked change in atmosphere. Before coming to this room, I’d taken a tour of the facility, and my guide and I had an upbeat, enjoyable time. When I entered this room, the somber mood was palpable.
After I signed the papers, I was asked to move to another chair and told I could no longer talk. The woman asked for my glasses, then placed green, bug-eyed goggles on my face. The goggle lenses were foggy, with dark circles in the center to simulate macular degeneration. The area surrounding each dark spot was cloudy.
She covered my ears with ear phones emitting jabbering background noise, rather like a muted radio talk show. She poured un-popped corn into each of my shoes, to simulate the pain of arthritic feet and bunions. Another woman pulled gloves with popcorn-filled finger tips over my hands, then taped together three fingers on each hand - middle to small fingers on my left hand, thumb to middle finger on my right. I felt as though I was, bit by bit, being entombed.
The woman led me to dimly lit room and told me that I had five tasks to complete, once I went inside: find a tie and hang it around my neck, pair up six sets of socks, clear a table, draw pictures of my family and name them, and find a belt and put it on.
I gingerly found my way into the darkened room. The door closed. I saw a bed piled with what looked like sheets and lumpy linens. I started there, trying, with my handicapped hands, to dig through the pile of cloth.
I could see a tie shape. Then another. And another. I didn’t know if I was supposed to just put on one, or all that I found. I couldn’t ask the woman in the shadows, who was watching me and taking notes. So, I put on about three. I kept digging, trying to feel and see socks. At first I’d just find one of each pair (just like the dryer, I thought). Finally, I dug up a couple of pair. By then, I’d forgotten how many I was supposed to match. The voices were so annoying.
I remembered clearly, however, that I was supposed to draw pictures of my family and label them. There was a bedside table and a light colored spot. Yes, paper. I fumbled around and found a pencil, then clumsily drew three stick figures on the paper and tried to write names. I couldn’t feel the pencil well, and it was difficult to hold, with my numb, nearly immobile fingers. I couldn’t see any of my drawing or writing, but I made some squiggles on the paper and moved on.
I was getting nervous. I’ve always been an "A" student. I needed to ace this test! The table. Yes, I was supposed to clear the table. The napkins and plates were red and fairly easy to see. The plastic utensils were white. There were some plastics cups. I piled up the paper plates, then put the napkins on the plates, then added "silverware." I could feel the woman looking at me and I wanted to ask where to put the stuff, but I couldn’t talk. Finally, I just placed it all in the far corner of the table.
Then what? I wandered around. I looked at everything. I wracked my brain. It had seemed so simple when the woman at the door named my tasks, but I knew now that the voices had distracted me.
What next? I couldn’t find another thing that triggered a memory.
The woman in the shadows spoke. "You’re doing fine, she said. "Just two more tasks to complete."
I don’t remember if I was startled into speaking or if I was just thinking, but my response was, "Two? I’ve done four. I had five. She’s saying six. Two more? Is she trying to trick me?"
I felt imprisoned by time. I just wanted this over. I no longer needed an "A." I spotted a chest in a corner. On top was a pitcher and there were some drinking glasses. I fumbled around and carefully got my gloved and taped fingers through the pitcher handle. I knew that this wasn’t my task, but I also knew I should do something - anything - to prove I wasn’t failing.
I poured some water in a glass. Should I drink it? I was thirsty. What if it isn’t water? What if it isn’t even meant as part of this training? What if it’s toxic? I put the glass down. When will this be over? When? Six minutes? They are lying. They are playing with my mind.
I stood still, eyes roaming the room, trying to concentrate. I struggled to look around those horrid black circles, through the cloudy lenses, into the darkness. What am I missing? This is an eternity.
Finally, the woman spoke. "Your time is up," she said. The door to the brightly lit hallway opened. A different woman came through the doorway and grasped my arm. She led me into the hall. Someone from behind took off my confusion earphones and put on another pair. The voices in my head were gone. Now, all sound was muffled.
"We’re going up some stairs," the woman told me. Grabbing my elbow, she guided me as I hesitantly felt my way up one flight of steps. I had to bump my toes into the riser of each step, then shuffle up. She was going too fast. Should I tell her my feet hurt? She’s going too fast! I’m afraid I’ll fall. We got to a landing, turned, and I stumbled my way up another flight. We went through a door.
To be continued…
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.