'Virtual Dementia Tour' Increases Caregivers' Empathy

An effective way to train a caregiver is to attempt to put them in the shoes of a person living with dementia

Part one of Sensitivity Training for Caregivers tells about the first segment of my training experience at a local nursing home. Reading Part 1 first will provide you with the full experience.

Goggled, Hobbled, Isolated by Headphones, I Am Guided Forward

We finally reached the top step. The woman holding my elbow didn't have much to say. I was hungry for the sound of an unfiltered human voice, but I had to concentrate so hard on climbing the steps, as my sight was distorted by the goggles, that I probably wouldn't have heard much, anyway. Besides, these headphones were isolating.

We passed through a doorway. Two other women were in a large room. They must have been aides. One aide stood beside a young woman in a wheelchair, likely one of the staff going through training. It was obvious they were waiting for me.

An aide pushed a wheelchair toward me, mentioning "the one in the black pants." I was wearing black jeans.

"This one's hospice?" she briskly asked the woman who brought me in.

"Yeah," she said. "I'll put her in this chair," the woman said. "No one who uses this chair lives long, anyway."

I think the woman who brought me in, left. I never thought I'd miss my silent partner, but I felt abandoned here with these strangers.

One aide said: "Did she do anything? Work anywhere? Know anything about her?"

The second aide said: "I think she worked at a newspaper."

“Well, we need a nickname for her even though she won't last long,” the first aide said. “Look at her. Not much to her. Let's call her Nosey. People who work at newspapers are nosey."

"That or Snoopy," the other one said.

"Snoopy. Nosey. Pretty much the same," the first one said. "Don't know what it is about that chair, but people sitting in it always die fast."

They Put Me in the Chair Where People Die

One aide was on each side of me now. They tied my arms snuggly to the arms of the chair. They lifted my popcorn filled shoes up to the chair's foot rest. At least my feet felt better.

Then the chair began shaking side to side. "This chair needs fixing,” the aide behind me said. "See, it wiggles." Once more, she shook the chair rapidly, side to side.

One aide called out: "We've got a couple of feeders here!"

She pushed me in my chair, enthusiastically wiggling it as we went, nearly side-swiping a wall in the process. She deposited me at a table. All the while, she was chatting with her co-worker about the "bad luck chair," and how nosey newspaper people are and how I wouldn't last long.

The table was uncomfortably high for me — I couldn't see anything but shadows through the bug-eyed goggles. I couldn't move my arms since they were tied down.

The aides' talk was muffled by my headgear but audible and the pair kept on chatting about their plans for the weekend.

"Man, will this shift ever end?” one of them said. "I can hardly wait to get out of here."

"Seems like forever. I've worked three doubles in the last two weeks," the other one said.

Feeding the Helpless

Suddenly, something was pushed into my mouth. I didn't see it coming because of the blacked-out circles on the goggles. It was a spoon with something pasty — pudding probably. A glop was trailing down my chin.

Before I could swallow, the same spoon was pushed into my mouth again, this time with something drippy. Some kind of salty broth? Not sure. I didn't like it and was trying to choke it down when another spoon of something went in, pureed meat, I think, followed by liquid from a cup.

Food was all around my mouth and dripping off my chin. I wanted to scream: "Stop! I can't do this anymore! I'm going to be sick." Yet, I had no voice.

I felt utterly helpless against these two. I wanted only to have my face wiped off. Gluey stuff covered my chin and smeared my cheeks. Liquid trickled down toward my neck. They continued to talk about their lives while shoving food in my face. I'm assuming another woman was being fed, too, but I couldn't see her.

My arms were part of the chair, immobile. They didn't seem to belong to me. Stuff was drying on my face. I was getting close to breaking through the act, as I didn't think I could take it anymore, when the aide finally said, "I think this one's full. How about yours?"

Why am I called “yours” like I’m a thing? I have a name!

"Yeah, she's full, too," the other aide said.

"Whew, someone stinks. Is it yours?" my aide said.

The woman sniffed and said no. Then my aide pushed me forward in the chair and sniffed. "Eeew! It's her. What a mess. Poop. Now I get to clean that up. I hate cleaning up poop. Yuck!

They push my wheel chair roughly and fast, bumping over lumpy areas in the rug the height of doorway thresholds. The women continued to jabber, talking about people who kept ringing their buzzers, saying someone else could answer the calls because they "do it all the time."

We approached a window and my chair stopped.

"Geez, there goes Harold again," my aide said. I'd better get him.

"Yeah, I've got to get Hazel, I suppose."

Even My Tormentors Abandoned Me

They left me without a word. It was kind of a relief, yet I felt fearful and frozen in time. I stared out the window seeing nothing but light. I was lonely and scared. Isolated and abandoned.

After a while — I don't know how long, as I had no sense of time — the woman came and said: "We're done. That was pretty over-the-top, wasn't it?”

She was jovial. Grinning. "It's greatly exaggerated, but we want to get the point across."

She was untying my arms as she talked. The other aide and her charge were back, too. They told us where we could empty the popcorn from our shoes. My first thought was: "You mean I can stand up? I'm free?”

Released From Captivity

I got out of the chair, somewhat amazed that I could. Humbly, quietly, as if I didn’t have a right to speak, I asked: "Where do we put the gloves?" I found I couldn't make eye contact.

Another woman came in the room carrying the eye glasses that had been put aside to make room on my face for the goggles. Then I was asked to stop in another room to take the same test I had before this began, the one about perceptions about care of those with dementia.

I still felt I should tiptoe, and speak very quietly, kind of like I'd be in trouble if they knew I was out of my chair. I went into the room to fill out the form. The pair of aides had left to gather their next two victims. Those two deserve Academy Awards, I thought.

After the test, I found my way out of the complex and got into my car. I sat there for a while, trying to regain my sense of reality. I touched the steering wheel and could feel it. I stared at the trees, just starting to bud with spring leaves. I could see them. Clearly.

My sense of self and my thinking were beginning to normalize.

I know I've been a good caregiver. As good as anyone could expect. But I wished that I'd had this experience before surgery destroyed my dad's brain. I'd done my best to get inside his head and figure out where he was at any given time. But now I knew more. Far more.

I wept as I drove back to work.

Carol Bradley Bursack
Meet Our Writer
Carol Bradley Bursack

Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. This experience provided her with her foundation upon which she built her reputation as a columnist, author, blogger, and consultant. Carol is as passionate about supporting caregivers work through the diverse challenges in their often confusing role as she is about preserving the dignity of the person needing care. Find out much more about Carol at mindingourelders.com.