The siren blared as I groped for the closet handle, sending me stumbling back on prickling feet.
I knew I had to find a belt, but it wasn't in plain sight, and I could barely see into the shadows. There were other tasks I was supposed to do — something about a grocery list? — but I missed half of them when they were listed and forgot the other half. The garbled instructions hanging on the walls were no help.
As my heartbeat slowed, I realized the siren hadn't been an alarm. It had played on the headset covering my ears, which were now filled with chatter and radio static. My feet were being pricked by a plastic insert in my shoes; my vision distorted by dark goggles; my hands covered in cumbersome gloves.
I was clumsy, confused, stressed and startled. That's what life can be like inside the mind and body of someone with dementia.
Wednesday, Integrity Home Care and Valley Park Retirement brought the Virtual Dementia Tour to Fulton. A program of charity Second Wind Dreams, the tour is designed to inspire empathy and accommodations for those with dementia.
"I've been doing hospice care for 15 years, and 10 years ago I went through the tour with another company," said Machelle Gilhaus with Integrity. "It sat with me a long time. I think I learned more through this tour than I did through my education."
Here's how it works. First, you suit up in the gear listed above.
"The items are based on research — thousands of hours of interviews with both caretakers and people with mild to moderate dementia," Gilhaus said.
The shoe inserts simulate neuralgia. That's the prickly nerve pain that often makes it difficult for dementia patients to walk. The glasses limit your peripheral vision and block out light. Dementia patients often lose their fine motor skills and depth perception, thus the gloves. The headphones simulate age-related hearing loss and the difficulty people with dementia have at tuning out background noises.
Then, you shuffle down the hall to a door. As you step into the dark bedroom on the other side, the headphones kick in. The proctor quickly reads you a list of five simple-seeming tasks, in a voice that's barely audible over the sounds in your ears. The list will not be repeated. You're on your own, fumbling with pill jars and trying to remember what's next.
The average person completes just two of the five tasks. I managed one.
Gilhaus and fellow Integrity employee Susan Streit led a discussion after the four members of my group stumbled their way through the tour. Streit said the debriefing is important: The experience can be emotionally difficult for people, especially those who have loved ones with dementia.
"I see people struggling or upset, and I just want to reach out and hug them," said Streit, who supervised the tour. "It's different for everyone. We've had people have panic attacks. Some people just giggle nervously."
I was a giggler. I also exhibited a number of dementia symptoms: pacing, shuffling, talking to myself, forgetting simple tasks, following other people around.
My experience lasted eight minutes. I can't imagine how difficult and scary it would be to slip permanently into that state.
"If you see someone with dementia get angry, they're probably just frustrated," Gilhaus said. "They're trying to make sense of their world."
That world can be a confusing place. Someone with dementia may look at a toothbrush and know they're supposed to do something with it, but be unable to remember what. A shiny tile floor may look like water. They may also lose the ability to recognize their own face in the mirror.
"If they're getting agitated in the bathroom, it may be because they see the reflection and think someone else is in the room," Gilhaus said. "Try covering the mirror."
Lois Long was among the tour participants Wednesday. She leads a support group in Fulton for caregivers of those with Alzheimer's, and she shared some other tips for caregivers and those visiting someone with dementia.
Play old favorite tunes and see what memories that sparks.
Tell the person who you are when approaching, rather than asking, "Do you know who I am?"
Label the bathroom.
Turn off the TV and other sources of background noise when you chat.
Don't argue with them — change the subject.
Invite them to do things (only one task at a time) rather than giving orders.
If they begin getting anxious, distract by talking about something nearby or take some deep breaths.
Be patient if they're struggling with what should be a familiar task.
If they seem suspicious of you, refer them to a trusted friend or minister to talk.
Take a break when you need one, by recruiting family or friends to visit or enrolling the person in an adult day care.
To learn more about locally available resources, visit the support group 11 a.m.-noon on the third Tuesday of each month at Fulton Presbyterian Church, or visit alz.org