At the window with Dementia - Episode 3 "Changing your location"

Why it is so important to understand the world they live in instead of trying to make them fit into your's.

Transcript

Hi, and welcome to "At the window with dementia", I'm Laura banner, and I'm your host.

Today's topic is changing your location. I don't mean, literally. I mean, figuratively. Of course, if you do need to literally change your location that's a whole separate topic.

But what I'm referring to is the need to meet your loved one where they are not to have them fit into our world, but instead for us to try to fit into their world.

I'll give you an example of something that happened to me recently. As I've mentioned in previous podcasts, my mom lives with me, my mom is definitely having some recall problems, she's having word-finding difficulty, she's having difficulty following the sequencing of events, and she likes to spend time on the computer, which is good in some respects, but problematic in others. One challenge that we frequently have is that she said she can't get into an account, can't get into a bank account, can't get into an email account, and so she does something on the computer that I'm unaware of, and by the time that I get involved, it's a hot mess.

So, awhile back when we first started having this issue, I asked her what her password was, and she pulled out a piece of paper because my mom is very organized, and I kid you not, I counted up 109 passwords. 1 - 0 - 9!

She had passwords for every site imaginable, never used the same password twice, and although I agree, you should have a few different passwords depending on the level of sensitivity but a hundred and nine?

Good lord, who could remember a hundred and nine! And so every time it was asking for a password, she would just create a new password, and you can quickly see how we accumulated a hundred and nine passwords.

So I went through, and I cleaned up everything, and we came up with just a handful of passwords, and we wrote it down. And I said, do not change anything please don't change anything. And I know she didn't intentionally do it, but it happened. And so, between myself and my daughter, probably once every week to week and a half, we're going downstairs to her apartment, and we're trying to retrieve a password.

So it happened again this morning, and I know the poor thing was so frustrated. And my knee jerk reaction that I, fortunately, kept in check was, Are you serious? Again? And I know that sounds so callous, and I really don't mean it to, but it's just frustrating because it seems like every time that we have to retrieve a password, it becomes a more and more difficult process. So I paused, I looked at her computer screen, and my heart broke.

Because the last time I was down in her apartment on her computer, she had so many icons, lots of different apps, she went to lots of different sites, and I think she's really, really fearful of making a mistake. And this time today, She had four icons. I wanted to cry, and it was so sad. I know that she is doing her very best to simplify her life so that she won't make mistakes, and I know it just kills her to have to ask for help.

Hopefully, we've never made her feel bad about it, but she has her own pride. And it's got to be really crushing her soul to have to ask, over and over and over again for this. So again, I took a deep breath, and we talked about it, and we were able to retrieve it, fortunately, but what dawned on me, and it's so obvious but again missing the forest for the trees. She can't fit into our world or her old world as it was. We need to fit into her world. We need to understand what she's going through. And although I'm sure no matter how hard I try, or how hard all of you try, we really don't get it.

Now I've gone through something called "Virtual reality dementia tour," and if you've never done it, I highly encourage you to go ahead and see if there's one of these tours in your area. Basically, what it is, it is an opportunity to go through an experience where you become very disoriented, where what you touch is no longer familiar with, what you hear you can't make sense of, you don't know where you are, you don't know what you're supposed to do. It's purposefully disorienting. And you come out of that with a whole new appreciation and understanding, to some degree of what they go through. And it's awful I'm going to tell you it's absolutely awful.

What I came away from that tour really surprised me. I really did not expect to have this revelation about it. So when I started the tour, my nurse actually went in, and she went through the tour before me, and there was a little bit of overlap, so when I entered the room, she was in there, and her session ended before mine, and as they escorted her out, I was in there alone. And there was this sense of loneliness. I wanted her back in the room. I felt comfortable having someone familiar within eyesight. And when she left, I don't want to say I was scared because that's certainly an exaggeration, I was uncomfortable.

And, I'm sure all of you who care for someone with some level of dementia,  You've probably noticed that when you walk out of the room, they're calling for you, they become anxious, they want to know where you are, even if you're only one room away. Maybe you just stepped out of the room to go make a snack or to take a phone call. But that brief distance away from them, that brief moment of them not having you within eyesight provoked anxiety. But to a much milder degree, that's what I felt when my nurse was taken out of the room. And I've never forgotten that.

When I talk with families, one of the things that I hear frequently is, they always want me right next to them, and I reassure them that that's natural. They are that person, Everyone has their person, and it's usually the primary caregiver, spouse, child. So, having them out of sight provokes a lot of fear.

So again, going back to where they are, meeting them in their location, really is something we need to keep in mind. Because things that appear one way to us, and seem to make sense in our world doesn't necessarily translate to their world the same way. So I would encourage you all to think about this and think about what it must be like for them to try to fit into our world, at the pace that we talk, at the rate of our daily activities, at our quick response to a question.

What about our flexibility to make a change at a moment's notice? Doesn't that disrupt their day? You all know what I'm talking about. Any kind of change in their usual routine. They struggle with it, can really create a perfect setup for a bad evening.

So, what I want everyone to think about is what you can do to meet your loved one, where they are?

Anyway, with that, I want to say, please check out my Instagram at compassionate_education or my website at compassionateeducation.com

We have lots of information that you can find on both sides, and certainly, if you have any questions or topics that you'd like me to address, please send me a message through either platform because I'd love to hear from you. 

I hope you check back regularly this will be a weekly series, and I'm sure glad to be here, I hope you're enjoying the podcast as well. Take care, and have a great day.