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Before Thursday, I already had a healthy dose of fear when it came to dementia. Being the daughter of a psychiatric nurse and creative writer will do that to you. 

As a nurse who has worked with older patients and psychiatric patients for over 40 years, my mom’s biggest fear has always been developing dementia. Every time she loses her keys or forgets someone’s birthday, a shock of fear appears on her face. It’s worth noting that she also works the night shift and has insomnia and ADHD — which contribute to her forgetfulness.

I’ve always given her a hard time about it but of course, the worry is there. I even focused one of my research papers in college on Alzheimer’s disease research and prevention. But words can only do so much, and in this case, no amount of them can truly do justice to the experience I had on Thursday when I attended a “Dementia Tour,” a simulation experience put on by the Three Rivers Area on Aging (AAA). 

Three Rivers Area on Aging (AAA), a division of the Three Rivers Regional Commission, has a lot of programming to help seniors, caregivers and senior centers across ten counties, including Troup County. They do everything from providing respite care to hosting farmers’ markets with cultivated local farms for low-income seniors. 

The Dementia Tour is meant to help caregivers and family members better understand the experience of individuals living with dementia. 

After the tour, I realized just how frightening it must be to have the disease. It was explained to me that the experience simulates the late stages of the disease, when communicating, cognition, and motor skills, have all but deteriorated. That’s exactly how I felt after the experience. 

Before going into the tour, I could already feel nervous energy bubbling up inside me. The man to my left was jovial and talkative. He chattered in a booming voice as the staff placed goggles over his eyes. My own went on and suddenly, my vision was blurred. They led him away and while I waited to be brought back to the simulation room, I heard bumps and jolts through the wall. I hadn’t even started the experience and already my heart was pounding with nerves. 

Finally, the staff member returned for me and guided me into the room. She placed the headphones on my ears and instantly, I was bombarded with noise. I felt my heart race. I tried to make out her instructions but I heard none of it. I stood at the door where the staff member had left me, frozen in my spot. I was thrumming with nerves.

Later, after I was led out of the room and had slowly peeled the equipment off my body, I had time to think. The man who had gone in with me was much quieter than before as they led him away for the debriefing.

My own hands were still shaking, and I was worried I might topple over on my way to the debriefing room. I was told that I had muttered things I didn’t remember saying. I had wandered around nervously. I had shallow breathing and gasped as if I couldn’t catch my breath.

I don’t remember any of this but I wasn’t surprised. Even after sitting for several minutes back in the real world, returning to my own reality, I felt disoriented. Nothing about that room had made sense. 

I can’t give too specific details because visitors aren’t supposed to have any background knowledge of the experience before they go in. But what I can say of my experience, is it was one of the most uncomfortable ones of my life. 

After experiencing the Dementia Tour, I realized just how startling the reality of what those living with the disease is. It’s not enough to care for our elders by putting them in homes, patting ourselves on the back and calling it a day. There is always something we can do to help carry the burden of our senior communities. 

Now when I think about the fear my mother has, I can’t laugh it off quite as easily as I would’ve before. There are never enough resources out there for caregivers. They are often overlooked when it comes to dementia care and palliative care. Being an ally who can advocate for respite services and support groups is one of the very best things I think we can do for caregivers.

And when, inevitably, our lives or families are touched by it, it’s important to remember patience and empathy.