Sometimes I get to go on some really interesting adventures, thanks to my reporter’s gig at the newspaper. (And sometimes I just sit at my desk wondering what it would be like to have a normal job with normal hours that lets you see the sun.) I had such an experience last week, when I scheduled a “virtual dementia tour.”
One of our local assisted living centers is hosting free virtual dementia tours soon, so my editor asked me to write a first-person account of what such a tour is like. I had no idea what to expect going in. I knew the ins and outs of the event, but I decided not to research the actual “tour” part because I wanted to go into it like a person off the street would.
Uh, and also I didn’t have time. 😉
The assisted living center had two of its employees take the “tour” with me, and we assembled in a staging room, where we were handed a box of supplies that would aid the simulation: Glasses to mimic macular degeneration, textured shoe inserts to make walking difficult, earphones and an iPod for a constant stream of background noise, and two pairs of gloves — one plastic, one mitten-like, with one of those turned purposely inside out — to restrict coordination. (This was a “worst case scenario” situation.) We got ourselves ready, and I already was noticing a problem — not only could I not see, but walking on those inserts (I was wearing sandals with no socks) was going to be a major problem.
We made our way carefully down the hall, and then they lined us up in front of another room. One of the “tour” leaders started talking to me — and it wasn’t until she was halfway through that I realized she was giving me a set of instructions for what I was supposed to do inside. I was first in line, so I heard the other two women’s instructions as well, even though I was trying to tune them out. I tried to repeat my list to myself, but I couldn’t. The noise in my ears made it impossible to think, and my feet were hurting to the point of distraction.
And then they let us into the room.
It was dark. I couldn’t find a light switch and gave up trying to find one. I wandered a bit trying to get my bearings, but didn’t really want to walk much, given how painful it was. I saw a notepad by the TV and did my first task — drawing and labeling my family. The gloves made it hard to grip the pen, but I’m not an artist anyway, so whatever. Done!
I sat on the bed before a pile of laundry and started sorting and folding six pairs of socks. I couldn’t see very well, and I couldn’t get a good grip on the socks, but I managed.
Task done, I tried to think about what I was supposed to do next. Any time one of us stopped moving, one of the leaders would tell us how many tasks we had left to do. One of the women asked for help, but the leader just repeated she had to finish her tasks. (They’d warned us ahead of time they would offer no help.) I went to the closet, found a belt on the top shelf (good thing I’m 6-feet or I might not have seen it) and thought about my instructions: Thread the belt though pant-loops. Did they mean my pants? I was wearing a dress, so that was going to be awkward. But I found a pair of pants hanging in the closet — not hard, there were only four items in there — and took that whole ordeal back to the bed to get to work. Anytime I could sit down and get off my aching feet, I did it.
That done, I was rather at a loss as to what to do next. We each had five tasks, and I’d done three. One of the leaders kept telling me I had three more tasks to do, which made no sense since I’d done three. I finally gave up and sat on the bed to wait it out. By my calculations, I’d been in the room for a half an hour. I was frustrated and anxious, and knew I’d let everyone down.
And then it was over.
Getting debriefed was interesting. They told me completing two tasks was actually pretty good — which compelled me to correct them with a patient, no, I did three, and they were like, uh, yeah, that first one you did was actually someone else’s task.
Then they asked how long we thought we’d been in there. “Forever” was the consensus, but it had only been nine minutes.
Did we remember they’d told us there was a list of each task group in the room that we could have looked at? No, none of us did. Why didn’t we turn on the lights? I couldn’t find the switch, I said. Why didn’t you open the curtain? she asked.
Because that hadn’t occurred to me, to be honest. Light was about the farthest thing from my mind.
What I took away from this is that when dealing with someone with memory loss, giving clear, one-item directions is the way to go. And you can’t change the person, you can only change yourself and the environment — turn on the lights, be positive and affirming, keep it simple. Introduce yourself even if this person has known you forever. Don’t compare what they used to be able to do with what they can do now.
Anyway, should you have the opportunity to take such a “tour,” I highly recommend it. (This is a national program.) My empathy level and understanding now is so much higher. I wish I’d have known all of this when my Grammie M. was showing signs of memory loss — she’d get so frustrated, and I didn’t know how to help her.
I don’t know what this has to do with minimalism or zero waste, you guys, but I felt compelled to share. In retrospect, the sparsely-decorated room and limited personal items probably helped us — had I just walked around and took note of what was there, I may have been able to figure out better what my tasks were. But wow, it’s hard to think when you hurt and you can’t see and you can’t concentrate because it’s so noisy …
Thoughts, feelings, insights to share with the group?