The lyrics are from Styx’s Crystal Ball, but they could have come from the heart of any number of people struggling with dementia-induced confusion, including Alzheimer’s patients:
“Tell me, tell me where I’m going
I don’t know where I’ve been
Tell me, tell me, won’t you tell me
And then tell me again
My heart is breaking, my body’s aching
And I don’t know where to go
Tell me, tell me, won’t you tell me
I’ve just got to know”
This is hardest on the patients themselves, and the only reason this post isn’t aimed at them is that there’s not much they can do about the situation. Instead I write to caregivers and others who will be interacting with the sufferers. Difficult as this is at all times, emergency situations will only make it worse. How can help your loved one cope with the confusion, uncertainty, and unfamiliar circumstances that arise during crises? How can you interact successfully with anyone who’s overwhelmed and confused by the changes in circumstance?
Who needs to think about this?
You do. I do. All people, and particularly all preppers, do. It’s not only the caregivers who are likely to be interacting with persons suffering from confusion in a disaster. For one thing, there are a lot of people with dementia out there (more than 11 million diagnosed in the US). Many more people are having enough cognitive difficulty that they do not respond well to dramatic changes.
Then there are the people who are ‘normal’ but have an astounding ability to tell themselves (and believe it) that “everything’s fine” or “it will all be back to normal soon.” They are slow to wrap their brains around new and uncertain cirucumstances. Some of the same approaches work for both people unable and just unwilling to face a new challenge.
Inability to remember can have unexpected consequences
I was recently sitting enjoying the evening with a couple of dear friends, one of whom has Alzheimer’s. We’d turned off the lights to better appreciate the moonrise. Even though we were all just sitting in our chairs, my affected friend became very concerned, asking again and again where we were and what we were doing.
I realized with a shock that this strong and capable man had become afraid of the dark. Why? Without normal visual clues, he had no idea where he was. He couldn’t keep recent events in his memory reliably, and was constantly relying on environmental cues to orient himself as to where he was and what he was supposed to be doing.
How would you feel if you lost track of where you were whenever the lights went out?
He was doing his best to put the pieces together — it was dark and there was starlight out the window, so he must be in his bed, right? But that didn’t feel right, leaving him at a loss. Once I understood what was going on, it left me deeply impressed with his coping skills. This inability to track events was his life now, and he usually did very well at figuring things out anew every few minutes. Given a new set of circumstances though, his ability to interpret the clues failed and his confusion grew. We don’t generally realize how much we’re relying on our memories to make sense of current reality.
Be ready to explain, and then explain again
As he became unable to track the unusual happenings, he needed to have it explained, both to ease his mind and to obtain his cooperation. Since he couldn’t keep the explanations in memory, he needed them to be repeated, again and again. Of course this task fell on his caretaker.
She did an amazing job of it, laying out the situation (where we were, what we were doing and why, what would happen later) repeatedly and calmly, without irritation or agitation in voice or manner. The latter was critical – the guy is prone to confusion due to not tracking, but he’s neither stupid nor insensitive. He would certainly have noticed and responded to any upset on her part.
It’s easy to say “Keep explaining everything clearly and calmly.” It’s harder to do when you’re also trying to deal with a crisis such as an evacuation/bug-out. One approach that helps is to shift your mindset. When most people ask us the same question ten times, they’re being massively inattentive or intentionally annoying. It works; we get annoyed. Seeing the questions of the confused person for what they are — honest attempts to extract important information — makes the repetition less burdensome.
Be ready to deal with the consequences of the confusion
My friends had experienced power outages since he developed his problem, so his caregiver was not caught unawares. She makes sure he always has a flashlight close to hand, and when the darkness falls immediately reminds him where to lay his hand on the nearest. Knowing he’s got the light gives him some peace.
This is just a single example; but it’s an example of looking ahead to situations that would be especially confusing if your short-term memory was shot and figuring out how to help the person through those situations. If you live or often associate with someone with dementia, pay attention to how they react in different circumstances and consider that when you make any plans involving the person.
It’s also an example that is likely to be a common situation. He was disoriented because his memory wasn’t up to putting together the small cues available in the dark to make a situation he could understand. Other people with short-term memory problems would be expected to have the same issue. The dark places of the world can be good spots to bug out to (more on that here (clicky)), but be prepared to help them cope if you’re bringing anyone with memory issues.
Confused people tend to wander
It makes perfect sense, if you don’t know where you are, that you might wander off to look for something familiar. Expect that a confused person might do this and plan for it. If the scenario you’re planning for is likely to have electronics working, there are lots of options for tracking people, such as these (clicky). That’s a backup plan though; keeping them from wandering in the first place is a better option. How to do that?
Here’s one option for an electronic locator. Others work with smartphones. Consider how difficult the catch of the bracelet is to open…
- Keeping the risk in mind at all times is the first and very helpful step. Even if the person has never wandered before, putting them in new circumstances may trigger the behavior.
- When we went camping, we had one big tent for sleeping and Mom and Dad slept right next to the entrance. Not coincidence.
- If you may be going through crowds, and you’re not trying to be all TactiCool and stealthy, making sure the person has bright and distinctive colors on is amazingly helpful. I can recognize Salty half a mile down a trail due to his biking shirts being what I call “don’t-run-over-me yellow”.
Be aware of problems with confusion in new people you meet and deal with
Given how many people might have trouble coping with emergencies, we should keep in mind the possibility that random strangers we meet are struggling with confusion. Are their facial expressions normal, or are they rather blank and looking off away somewhere? How are they standing and moving? The pic below shows stereotypical posture in Parkinson’s disease; but it applies equally well to many other causes of dementia. Moving with short, shuffling steps is also an indicator.
Dementia from several sources can include both this posture and confusion.
This assessment makes a difference in how you interact with them. Subtlety is often of no value with confused persons, for example. Preppers sometimes need to be concerned with OPSEC, sure; but we also need to communicate clearly at times. Being direct with a calm and pleasant demeanor is most likely to get good results. Again, patience. Their lack of comprehension is not directed at you, and they’re surely suffering by it more than you are.