Dementia, Masks, and a New Not-Normal in Nursing Homes

I wear a mask, and I encourage others to wear masks. None of what I am about to say changes that.

But…masks are rough for people with dementia.

Sure–it might be hard for someone with dementia to wear a mask correctly. But it’s more than that…

Being around people wearing masks can be difficult, confusing, and agitating for people living with dementia.

Masks are often linked with situations that aren’t positive. People in masks surround us when we go to the dentist. Or when we are going in for surgery. People in masks rob us. Many of us have developed negative connotations of masks, and for good reason.

A few weeks ago I was running out on the trails in our community. A big guy was walking toward me. He was wearing a black sweatsuit and a black baseball cap. He was also wearing a mask.

If this situation would have unfolded a year ago, I would have been scared. I might have even pulled out my phone so it looked like I was going to make a phone call…that’s a trick I use if I feel uncomfortable when running alone.

This year, however, the first thing that came to mind was “How thoughtful.”

Oh, 2020.

Imagine if, in that moment, I couldn’t remember why someone might wear a mask. Imagine if I had been unable to process the consequences of COVID.

That’s the thing. When we understand why people are wearing masks, it’s okay. When we don’t, it can be terrifying.

Add to that difficulties with communication. I have had quite a few people without dementia tell me that they have recently realized how much they rely on facial expressions and lip reading. Masks have made communication more challenging for many of us.

I am always telling people that those with dementia understand a facial expression (say, a smile) much longer than they understand words and phrases.

Recently I heard someone who works at a memory care community complain about how the residents have been giving her a hard time lately. You know what? They aren’t giving her a hard time. They are having a hard time.

Think about it.

You’re in a space that doesn’t make sense to you. There are a lot of people there, and they are wearing masks. You’re not sure why they’re wearing masks. It’s often hard for you to understand what people are saying, and it’s pretty much impossible with these masks. You’re not sure if they’re doctors. Maybe you’re sick. Or maybe they’re hiding their faces because they are doing something wrong. They might be criminals.

You plan to tell your family about this when they come. But they don’t come. You’re not sure why. You don’t know how long it’s been since you’ve seen them. You asked where they were, and someone said something about a virus or illness. You’re worried they’re sick. They could’ve died. But, then again, you might’ve said something wrong. Maybe they’re mad at you.

You used to get to go places. Outings. Kinda like school field trips. You went on a van or a little bus. That doesn’t happen anymore. You wonder if you’ve done something wrong. Maybe you’re grounded.

For a while, you couldn’t even leave your own room. It was just you and your roommate. Your roommate doesn’t seem to like you much. You try to talk to them. No response. Maybe they’re angry at you.

People in masks come by. Some look familiar, but you aren’t sure who they are. They bring your food. You don’t get to go eat with your friends in the dining area like you used to. You miss that. Some of those people were fun to talk to.

There used to be an art group and a baking group. Where are these friendly people who used to come get you to go to these groups? Now it’s just these new people in masks. And they never ask you to go anywhere except to take a bath.

That’s bit scary in itself. Sometimes you’re in the whirlpool tub and the people in masks seem to be looking deep into your soul. And you want to put your clothes on and run, but you don’t know where they put your clothes. And your body wouldn’t allow you to run anyway. Every once in a while, you get this weird idea in your head that you’re a subject in a science lab and they are going to dissect you.

There’s a window in your room. You can see cars driving around outside, almost like the world is normal. You wonder if everyone out there knows what’s going on where you are. How can you let them know? What if you yell?

You see some people in masks. Every once in a while you think one looks like your daughter or your son, and you get your hopes up that they’re coming your way. But they never do.

Is it any wonder that people with dementia are struggling? Is it any wonder that they are having a hard time?

I don’t have any easy answers. I don’t want people to take their masks off. I am all about safely allowing family caregivers into facilities, but I understand that facilities have to follow guidelines…and an outbreak could be fatal.

This isn’t normal and it isn’t okay.

3 Comments

  1. You do such a great job helping others understand all the things that might be going on inside a brain battling dementia. Thank you.

    Like

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