Several unrelated events have got me thinking about dementia.
At work, our role is to regulate the air emissions (pollution) coming from large industrial plants, like oil and gas plants. Part of that process involves those facilities sending us regular reports containing data about their emissions.
Last week an older gentlemen employed at one of those facilities was having a great deal of trouble getting his report sent to us. He called numerous times over the course of a couple weeks, repeatedly asking the same, very basic questions. They weren’t technical questions. They were questions about which form to use, and whether it needs to be notarized, and how to fill out the fed-ex mailer. All of which are reasonable enough questions the first time, but not the third or fourth time. (Luckily, he’s probably not the same person responsible for the accuracy of the data in the reports, because that part is surprisingly complicated.)
Then this weekend John and I had an encounter in a grocery store parking lot with an elderly woman leaning on her horn and shouting at us. Initially, our response was to feel angry, because she was being aggressive and there was no reason for it; she was clearly way out of line. But then we realized that it was just too incongruous. There was really no comprehendible reason for her behavior. That’s when it dawned on us that she probably had early stages of one of the types of dementia that cause anger and upset along with the confusion, such as Alzheimer’s.
Then this week, I came across this article in one of my magazines.
https://www.newyorker.com/magazine/2018/10/08/the-comforting-fictions-of-dementia-care
It’s a very in-depth look at one of the key controversies around dementia, which is how much should caretakers try to keep their patients grounded in our current reality, vs going along with whatever reality the patients are in at that moment.
Most people’s initial reaction is “don’t lie to them, it’s not ethical or respectful”. But is it ethical to tell someone over an over that their spouse is dead, they’re in a care facility, and they can never go home – when that message causes anguish every time they hear it? For the patients, it’s like they are hearing it for the very first time, every time they are reminded.
Wouldn’t it be more ethical to talk with them about the moment in time, 50 or more years ago, that their minds are currently occupying? But where do you draw the line between chatting with them about how things were 50 years ago vs saying things like, “Don’t worry, the children are fine. They’re just outside playing.”?
Turns out that most caregivers who are experienced with dementia care don’t try to bring their patients back to reality over and over, because it’s futile and upsetting. Nor do they ask reality-based questions that put their patients on the spot and make them scared and confused. They just join in the story. The article talked about how improv skills are useful. But really, any kind of unrehearsed communication is improv.
Memory care facilities are starting to deliberately create spaces that look and feel like a small town, rather than a nursing home. They even have fake bus stops, where patients will wait for awhile until they lose interest and go on to something else. Which seems very sad, but I think I’d rather sit outside at a fake bus stop that will never take me home, than be cooped up indoors for the rest of my life.
I’ve always been afraid of getting dementia. Possibly that’s because I know enough psychology to know that we cannot trust our minds at any point in life, and certainly not in old age. Or maybe I’m afraid of getting dementia because we are all afraid of getting dementia.
Dementia raises the question of who are we, really? Are we anything other than our minds? If we have an illness such that our leg isn’t working right or even our heart isn’t working right, we still have a sense of self. But if our illness changes our perceptions of reality, or causes personality changes, who are we now? Are we the same person? And if we are no longer ourselves, were we ever anything other than what our minds were doing?
It got me thinking about what I would like if I had dementia. Which of course I can’t know, because the dementia would change my preferences. But I can guess. For example, lock me up somewhere with a secure courtyard, please, give me the means to get outside. But do lock me up. I find the world scary enough now, with all my faculties mostly intact – I don’t want my future self wandering around lost and scared.
Since, with advanced dementia, every day is a new day, why not make it positive? Give me little stories about kids and dogs and parks and gardens. It doesn’t matter if they’re true, or even if they have anything to do with my life.
AI is too big of a topic for this already very long blog, but I am all for being entertained by a chat box. Put a little chip in a stuffed dog, let it spy on me if that helps my family care for me, and program it to talk with me. I’d even like that right now. (Just the chat part, not the spying part).
I’d love to have a decent chat box right now. My issue with them, (and the reason why I don’t currently use Siri or own an Alexa), is they are connected to the internet and beaming who-knows-what to who-knows-where. I’d like a disconnected one. I don’t need it to look things up on the internet for me. I just need it to chat with me in a relatively realistic manner.
At any rate, I’m veering off topic. Here’s my idea. I think if I had dementia, I’d like to have someone tell me stories. For example, someone to call me on the phone, and tell me the news of their day. This is one of the most basic aspects of our relationships with close friends and family members – is just relating our day. But current family news can be very confusing and upsetting for people with memory loss. I think it would be less upsetting if they were just stand-alone stories, where the person with memory loss wasn’t expected to know or remember the names of the people in the stories.
In addition, since our old memories are always in there somewhere, it would be emotionally impactful if those stories related to my own life, or at least believable in the context of my own past. It occurred to me that I could write those stories and record those stories myself, for my future self.
That sounds like a lot of work, given that I have no actual reason to believe I’ll end up with dementia. But I think the exercise could be useful for me now. I had a bit of a rough childhood, which I’m not going to describe in this blog. But, as these sorts of things invariably do, my experiences have had some lasting negative impacts on me. These unfortunate consequences can never be fixed, but they can be mitigated to some extent. One of the things that is known to help those who are dealing with difficult past events is to reinforce the positive memories that do exist – and maybe even augment them a little.
It occurred to me that if I wrote and recorded happy, brief, “family news” stories about a little girl named Tina (that was my childhood name), it would be potentially beneficial for me right now, regardless of my future. The narrator could be a made-up person, an aunt or big sister who never existed. And that person’s identity wouldn’t need to be explained.
It could be a series of phone calls, or maybe even videos, like a skype call, and each one of them would start out something like this: “Hi, I’m just calling to see how you’re feeling today – oh, and let me tell you what Tina did today, it was so cute…”
I think it could be fun to go back and listen to them someday, for the same reason it’s fun to go through old photo albums occasionally. I got this idea thinking about dementia, but now I think it could be a good idea even assuming I never get dementia.
I’m scared though, about trying to pull this off. I don’t think this will be an easy project to do. I’m much more comfortable with the present and future than I am with the past. I don’t know how to approach it. Should I write the stories first, and then record? Or should I just turn on the mic and start reminiscing? What if I can’t keep it positive? What if I can’t think of anything to say?
LOL, I sound just like my clients do when I suggest they try something that’s a bit of a stretch for them. “But…but…I don’t know how! I’m not good at that! It won’t work!”
Ok then, I’m doing this thing. I’ll let you know how it goes.