Sacred Spaces, Being Vulnerable, and Strangers in Your Bedroom in Dementialand

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?

14 thoughts on “Sacred Spaces, Being Vulnerable, and Strangers in Your Bedroom in Dementialand

  1. You say it so well, Elaine. I observed this just two days ago when I was visiting my husband. He immediately gritted his teeth and stared angrily at the wall. In that case it was just the cleaning lady emptying the wastebaskets, so what happens, I wonder, if he is half-dressed when someone comes in? I can only imagine.

    Liked by 1 person

    1. You just brought up something totally related to a conversation I had today—that we need to educate ALL STAFF including environmental/housekeeping on dementia! And many places don’t realize the importance of this!

      Liked by 2 people

  2. I’m glad this is being discussed more. LTCFs are geared for efficiency, not for compassion, and most professional caregivers aren’t properly trained to provide that compassion, from what I’ve seen, read and learned over the past four years. Even family caregivers forget about their loved ones’ dignity when we’re trying too hard to be efficient. That’s why the Butterfly method is so ingenious; I’ve noticed that caregivers who are made to feel part of the family are much better integrated. Check your ego at the door! You need to provide help without provoking resistance; if you come in with respect, a smile and a greeting, remain positive and loving while attending to what needs to be done, you will make the person feel safe and cared for, even if they don’t recognize you. Sometimes it’s just a small shift in attitude that makes a world of difference. We need solutions, so would love to hear how other people handle it.

    Liked by 3 people

    1. You’re so right Lorrie, LTC is still heavily entrenched in the medical model and so task focused it appears to be lacking in compassion, although I believe most people involved want to e compassionate. The Butterfly Household Model of Care turns that on it’s ear and brings a sense of family into the home. Love, respect, purpose, fun all found in abundance.

      Berni

      Liked by 1 person

  3. I hadn’t considered this at all. Thank you for encouraging people to put themselves in the position of the person being cared for — sometimes we are so caught up in our own viewpoint, we can’t see anything else.

    Liked by 1 person

  4. Related, but not related to today’s post: Do you have any posts that talk about the very beginning of living with someone developing dementia? I don’t want to believe that this change in my husband is happening, but it’s developing that something happens each day that proves that it actually IS happening. We don’t have a diagnosis, but the signs/symptoms are there and they’re real. I don’t want to say anything to friends (family already knows something is amiss because they’ve seen it) for fear they will begin treating him differently. I imagine there are others out there who are in the same place I’m in (or have been there). I’m still looking for a local support group but there isn’t one. How do others handle the first part of this life change?

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  5. Love it! I do a similar thing with participants in my education sessions and ask them why it’s normal for them to try and defend themselves or resist, but it’s a “behaviour” in a person living with dementia. I wish people would start to “get it”. It’s time to throw out the medical model of care and bring love & a sense of family back into the care environment. It’s a win/win for all.

    Berni

    Liked by 1 person

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