Dementia, Being Vulnerable, and Strangers in Your Bedroom (aka Have You Really Ever Thought About What It Might Be Like to Have Dementia?)

How often do you allow a stranger in your bedroom when you aren’t fully dressed?

Do you like it when random people you’ve never met walk into your bedroom while you’re in bed? And then try to touch you?

I often ask these questions of my audience when I do presentations. They usually make people laugh uncomfortably.

But I don’t let it rest. Honestly, I ask them, do you have a lot of strangers who just walk into your bedroom like they belong there when you are half-naked? Are you okay with these people touching you? What if they want you to take a shower or a bath in front of them? How would you feel if they watched you go to the bathroom? You said you were fine peeing alone, but they insisted.

What would be an appropriate response on your part? Shouting for help? Cursing at them? Threatening to call the police? Kicking? Throwing a left hook to the chin? Trying to locate a sharp object?

But if I’m a person living with dementia who is in my own sacred space, perhaps in my bedroom at home or my room at a nursing home, and a person I don’t immediately recognize comes in to provide care, “behaviors” like telling them to leave or pushing them away are not well-received. In fact, those “behaviors” are perceived as symptoms of dementia and will often earn you a sedative.

Let me explain why I don’t see these “behaviors” as symptoms of dementia….

Because it is a perfectly natural and normal reaction to a potential pervert you don’t recognize being in your bedroom.

Sure, not recognizing individuals you’ve known for years can be a part of dementia. Not understanding that a person is actually there to help (or at least try to help) could be a result of having dementia. Not remembering that your husband hired this person to assist you when he told you twenty times today could a part of having a type of dementia….but objecting to perceived threats to your own personal safety and being…THAT’S JUST NORMAL.

I was thinking the other day about my friends. I wouldn’t say I’m the hostess with the mostess (because it’s not true and also because I’ve always objected to the phrase as sexist—does anyone say the “host the most?”) but my husband and I like to have friends over to our home. If you’ve been in our house, you’ve likely been in our kitchen and our living room. You’ve probably been in one of our main bathrooms. And it’s likely you’ve hung out in our basement.

There are very few friends who have been in our bedroom. And those who have been in our bedroom are there for a specific reason, like “Hey, we are rearranging our furniture. Can you help us move that armoire?” (That’s just a hypothetical example. I’m not sure I know what an armoire actually is and I’m pretty sure we don’t have one.)

My point is that most of us don’t have a lot of traffic in our bedrooms (with the exception, perhaps, of parents of young kids…although I know parents who have declared their own bedroom off-limits to their kids)—especially when we are literally in our bed or not fully clothed. Bedrooms are sacred and for most of us (nudists aside) our culture dictates that being not fully clothed leaves you a bit on the vulnerable side.

When you barge into a nursing home room, you are stepping into a space that you may see as institutional and hospital-like. Although I’d agree that many nursing home rooms are institutional and hospital-like, they are the only space belonging to those who reside in them. Maybe a woman and her husband owned a large farm house before she downsized to an apartment after his death and then moved to a nursing home when her health declined. Her space in this world is getting smaller and smaller. Maybe that room is like every other room on the hall and she shares it with another woman, but it’s her space.

It’s the space where she sleeps, wakes, dresses, and brushes her hair. Think about the space where you do those things. Aren’t you a bit protective of that space? Doesn’t someone in that space have to have a good reason to be there? What if they offer you no reason at all? What if they act as if they belong—and they seem to think you’re the one being weird for being bothered by the situation?

But it’s a “behavior.” It’s people with dementia just acting up, right? They’re giving us a hard time. They’re not behaving like they should….maybe it’s a full moon (oh, I love it when someone throws that one out there).

But let’s think about it.

When you open your eyes tomorrow morning, just for a second imagine this….

A stranger blows into your bedroom. No knock. No introduction. They’re suddenly at your bedside. You realize you’re wearing a t-shirt but no pajama pants—you took them off because it was hot last night. They want you to sit up. The want you to take off your shirt because they say it’s dirty. You think that’s just a line to get you to take your shirt off. You’re not sure what to do, so you fight it.

They want you to take a shower. You don’t feel like getting up, but they practically drag you out of bed to go down the hall to the shower.

Maybe this is a nurse’s aid that you’ve seen five days a week for a year. Maybe it’s your daughter. Or your grandson. Maybe you recognized this person yesterday and perhaps you’ll recognize them again tomorrow, but if you don’t immediately recognize that person and why they must approach you in that space and moment, your response to fight back is normal.

I mean, I don’t really let strangers in my bedroom when I’m in bed and half naked. If one did make it in, there’s probably not much I could do to make you think I overreacted. Pretty much anything goes.

So why is it so hard for us to understand why people living with dementia may be agitated, fearful, and angry as hell when that same thing happens to them?