Full Episode Transcript

Nancy Treaster 

I wish I had known about this child proofing tip before I spent so much money on locksmiths. In this episode we talk about wandering. Wandering outside and wandering inside. Sue, let’s get started. I’m ready. There are three kinds of wandering we’re going to be talking about that are concerning. The first one is when they’re leaving the house alone day or night. The second one is when they’re wandering in the house at night while we’re sleeping. And then the third one is when they’re wandering in the house during the day. We’ve put together five tips for each wandering outside and inside. When your care receiver leaves the house unnoticed, it’s really scary. it is. So I was comfortable with my husband working in the backyard. He loved to work in the yard. That was his thing.

 

And until I went into the backyard one day to look for him, just to check on him, and he was gone. Not good. Couldn’t find him anywhere. So I thought, well, maybe he’s wandered inside. Very good thought. How about that? So I went inside, started looking around for him, couldn’t find him. Fortunately, while I was in there looking for him, the phone rang and it was one of our neighbors. And it was one of our neighbors who knew he had dementia.

 

They said, your husband is here at our house. He seems confused. Would you like to come get him or would you like us to bring him down to you? I said, I’ll come get

 

Anyway, crisis averted, lesson learned. Like anything, we’re observing and adjusting, and it was no longer safe for him to be in the backyard by himself. Based on that here, five tips for wandering outside. The first one is the one that you used and one that I also used, which is using our grapevine.

 

Sue Ryan  

When my husband and I had the diagnosis, early, early, early in the diagnosis, we shared it with everyone. Anybody all the way through, he and I both agreed we were gonna share it with everybody to invite them in. he liked to walk outside every day. I shared with everyone in our community that he’d been diagnosed with dementia and that when he was walking, there was a good chance that he might, at some point in time, get lost. And one of the things that was so beautiful about that is I would see him outside walking and a neighbor would come by and say hi and sometimes they’d walk with them or they’d be visiting with them or he may have gone to the wrong unit to go home thinking he was going home and they’d help guide him home and it was really helpful that other people and I’ve noticed I mean it’s what we would want to do as well is to help other people. So many people leaned in and wanted to help. So using our grapevine is really really helpful and sharing our journey so people can share with us. Yeah. The second one

 

And had I already started this, it would have helped me, is to consider using wearable tracking devices. And there are a variety of them. And especially if they’re still able to get around, but they might get lost. And here’s why I would have benefited from a tracking device. the second part of it, two things. One, I would have benefited from the tracking device. But two, in tip three, is registering your loved one early in the journey with the emergency medical teams and the police and the fire. And the reason that that is so helpful is they get their, your loved one’s photo. They find out their nickname. They find out hobbies and different things about them. They find out medications. They get a lot of information about them. And if they do go wandering, you call 911 and they will immediately dispatch officers. And this happened to us.

 

One of my husband’s friends was bringing him back from church and as they had been doing, my friend pulled up, my husband got out, he walks into the garage and my friend backs up and leaves because he’s walking in the garage. About 20 minutes after he was supposed to have come back from church, they still hadn’t got back. I thought, well maybe they got coffee. So I called the friend and I said, did you guys stop for coffee? When are you gonna head home? And he goes.

 

Oh no, I dropped him about 20 minutes ago. Oh no. My body temperature immediately goes hot and I looked around outside, couldn’t find him, so I called 911 and they pulled his information up. They said we’re dispatching someone immediately. I got in the car and I started driving around our neighborhood and in a matter of minutes I got a call from the police that they had found him and they gave me his location. I drove over there.

 

Hey, and the police officer having a grand old time. They’re just having this really pleasant conversation. And the police officer had gotten down to his level, and they were just visiting. And it was wonderful. I got there, and Jack had no idea anything had happened. Wonderful. And he was just, it was so pleasant. So please, please, please, please, Tracking devices, great early on, even before you think they’re going to need it. And then also register them with emergency management medical teams.

 

Nancy Treaster

Tip four – before I get to it, I’ll tell a quick story as well. So my husband, of course, we know the story where he wandered up to the neighbors. So I thought, you know, I really need to have the chime turned on on my alarms so that I know when he goes in and out the external doors. smart. We had one on our door. I thought this is time. It’s time. I need to know where when he’s leaving the house.

 

So, I turned the chimes on one evening on the door and went to bed. And that night, the chimes went off all night long. All night long. I was up and down trying to see what he was doing. I don’t know if he’d been getting up all night long many times and opening the doors and I just didn’t know about it until the chimes. Or if the sound of the chimes was so interesting that that was causing him to open the doors. open and the door. All night

 

And every time of course I had to get up and go figure out what’s happening. So back to the original story, the child’s proof doorknob covers. Of course, my first reaction was, I’m calling the locksmith. I can fix this. The next morning, call the locksmith. Locksmith showed up. I said, I need double deadbolt bolts on every external door. Hundreds of dollars by the way. So double deadbolt.

 

He definitely wouldn’t get in out because you have to have a key to get out and a key to get in. So I thought, you know, I can solve this and I did. However, come to learn, a lot of people use childproof doorknob covers. And I thought, you know, I’m at the point now where I’m starting to limit where he can go inside as well. So I’ll buy some of those childproof doorknob covers. He’s going to be able to

 

They’re not gonna work. He’ll figure it out. It’s not that hard. So I got them. I put them on some inside doors. He has no idea how to open them. Still doesn’t. Matter of fact, a lot of other people don’t know how to open them either, but he definitely doesn’t know how to open them. But that’s okay. That’s their problem. And I should, and had I known that, I could have put them on all the external doors and saved a lot of money that I spent on the locksmith. 

 

Tip number five is don’t stop at the doors. So another thing that he likes to do, and he still does it today, but at that time he had just started, is play with the locks on the windows, the sashes. And of course he would unlock one and the top of the window would come down, even though the bottom didn’t go up. And I’d spend a bunch of time going to get in a ladder, trying to get the top of the window back up and the latch back Sure. That was quite difficult and annoying.

 

I bought locked window sash locks, which are just sash locks, but they have keys. So you have to have a key to unlock the windows. And I now have them on all the external windows. And like I’m saying, he still plays with fidgets with the window latches all the time. So I’m really glad that I have them. Right. So those are a really good suggestion. They really are. And then in our home, we have the big sliding door.

 

Sue Ryan 

I put a pole down in the track, in the bottom of the track. So when he would try to open it, he couldn’t get it open and you can’t really see it in the track. It’s just at the bottom of the track. So that’s one of the things for sliding doors. That’s perfect. Perfect. Well, thank you very much. Let’s switch to inside tips. Let’s do it. All So the first inside tip is let’s start with the definition. We’ve been talking about wandering. The definition of wandering is when they’re walking around with out of purpose, they’re just wandering and unlike early in the journey when you can easily redirect them by the time they get to wandering it’s not as easy to redirect them so what we want to be doing is as early as possible when they start this kind of wandering around you start safety safety proofing the home in any of the places where you’re still allowing them to go there may be room like you mentioned there were rooms you locked off so there may be rooms that you prevent them from going to but wherever they can you wanna be safety proofing those. 

 

Nancy Treaster

I agree, there are times early on where you can redirect, but when they get to wandering, there’s sort of a natural uneasiness that’s starting to happen. so that is, it’s almost just the best to just let them wander. As long as you’ve got it safety proofed, it’s really all good. And they’re they’re wandering. So making sure that because they’re going to be wandering that they’re safe when they’re doing it. Exactly. So the second tip is as they’re doing that one of the things that happens when they’re wandering and as the diagnosis progresses it sometimes impacts their sleep patterns and so it’s really helpful to have a conversation with the medical team about ways to support them getting healthy sleep because their healthy sleep and your healthy sleep are connected. Very much so. I know your husband slept like a baby.

 

Sue Ryan

He did. He never had a problem sleeping. Very lucky, very lucky. I know I am. definitely see this consistently in the support groups I go to. 

 

Nancy Treaster

My husband, not so much. So we went through a phase where he would stay up for 48 hours straight and then sleep for the third night and then stay up for 48 hours straight and then sleep for the third night. So that’s the time to have a conversation with your doctor. It’s really not all that surprising that unsettledness that causes the wandering during the day spills over into night. It’s that same unsettledness that is in both to be honest. So these usually happen about the same time. You can start with simplistic, just over the counter, natural sleep medications and go all the way through to prescription sedatives. It’s a trial and error process. It took us probably a couple of weeks to really get the right combination of medication so that my husband slept generally through the night. That didn’t mean he didn’t get up at all, but generally through the night. But that leads us to tip three, because tip three is at night, they’re still gonna get up probably to go to the bathroom. So you do need to allow them access to at a minimum a bedroom and a bathroom. But you wanna start to take not just everything you give them access to during the day.

 

In order for you to be able to sleep, you need to narrow down what they have access to at night so that you know they’re safe. That they’re actually getting up and finding the bathroom and getting to the bathroom. that’s because that’s something they need to do, but not getting into other things that you need to worry about, like the stove and the oven and things, or unless you’re going to be up all night long, making sure that they’re not doing that. So if you can narrow down, if you have an ensuite where the bathroom and the bedroom are connected and there’s just one door out to hall or wherever, you can use those child proof doorknob covers on the inside of the bedroom door. And then that limits their access, but they’ve got access to a bathroom, access to a bedroom. I turn the light on in the bathroom so they know where it is. And that keeps them safe at night and keeps your anxiety about what’s happening safe at night. If you don’t have access directly to a bathroom, then you can use extra tall pet gates to sort of create a path to whatever bathroom they have access to and limit where else they can go to try to minimize the safety hazards. You can use those childproof doorknob covers on any doors you don’t want them to be able to get into at night. Really try to give them a much narrower scope of accessibility during the nighttime. 

 

Sue Ryan 

One of the comments that comes up periodically about the pet gates is people say, well, that’s cruel. You’re using a gate on them. And yet when we think about what everything we’re talking about, it’s for the safety of our loved one. They don’t know how to help keep themselves safe. And so we’re doing what we can to help them have their independence and have their freedom and still maintain the safety that we know so we can also be getting some sleep. 

 

Nancy Treaster

I agree 100 % with and you hear about that a lot. On the discussion groups, in the support groups, on the online support groups, there’s definitely both extreme positions. I’m definitely on board with the side of my job is to keep my loved ones safe. Yes. And they are not safe if they are wandering around at night. And I am not helpful if I haven’t slept all night. And so it’s just not sustainable for them wander around the house all night. Yeah, it’s having a different perspective. It’s the perspective that our lens is out of love and safety. I agree 100 % with that. So another thing you can do to help you get more sleep and maintain their safety is get some sort of a camera in the bedroom and the bathroom or whatever amount of nighttime space you’ve given them access to.

 

So it could be something as simple as baby monitors. So that’s a great idea. That’s what my mother used. That’s what mother -in -law uses. It could be cameras. Like there’s plenty of camera solutions out there. And you want to have access to visibility into what’s happening so that you don’t have to get up and down all night wondering if you hear a noise or whatever. So what we did with my dad is we had a motion detector next to his bed not pointed so that every time he moved in the bed that we would hear it, but it was pointed so that when he got out of bed, the motion alarm would go off, which was the hint to look at the camera so you could see what he was up to. And if you needed to interject yourself into whatever was going on, you did. But otherwise, you’re not up and down all night long because you’re worried they’re up and down all night long. So think about cameras and think about everything from baby monitors to…more sophisticated cameras, but some way to have visibility into what’s happening in their space that you’ve given them access to at night. Excellent. Especially when, what happens so often when our loved one has received the diagnosis is we stop sleeping in the same room. Of course. And so a lot of these are also to give you some ability to have peace of mind so you can rest at night knowing that you’ve done everything you can to put them in the best position to be safe as well.

 

Sue Ryan  

And these are things that help you do that. Well, and let’s be fair, a lot of the reason you’re not sleeping in same room is because of all the restlessness and the getting up all night. So it’s a big circle. And you need your rest. care. So you’re sleeping in the other room so you can get some rest and yet you’re getting up all night and not getting any rest. you’ve got to find, so we’re suggesting these tips so that you

 

Try to find the balance between those two things. It’s great way of saying it, the balance, yes. tip five is the last one is just keep an eye on stairs. whether it’s during the day or whether it’s at night, if they don’t need access to stairs, we’re suggesting that you use that same pet gate strategy or something else, we’ll tell you in a second, where you don’t have to worry about them and stairs. And there’s a couple of reasons why. They become less and less stable.

 

And people with dementia have depth perception problems. It’s the vein behind some of the shower issues as well. They reach down to pick up shadows, they knock their head. So there’s a lot that goes on with depth perception that affects things, but it also really affects their confidence when they’re trying to walk upstairs or downstairs. My husband would walk upstairs, but try to get him to come back down.

 

That’s like a whole nother ball game. So best to just keep the stairs off limits if that’s possible in your house. And for ours, our living area is the second floor. so what I did to make sure that I could prevent my husband from accidentally going to the stairs, you if I went to the bathroom and like that would be when he would want to go to the stairs or whatever. just, I just wasn’t sure. I actually had a door installed at the end of the hallway and the, the lock was on our side. I would have, it was with a key, so he couldn’t unlock that door. could easily be opened from the other side. And I knew that he was locked in if I was gonna take a shower or go to the bathroom or anything like that. So it gave me peace of mind and it also helped keep him safe. Right, of course. And in the reality that’s, when we’re talking about wandering, we’re really talking about safety.

 

Nancy Treaster

And we have another podcast that’s on a lot broader range of topics about safety and we’ll put the episode in the show notes. We wanted to make sure that we focus because wandering is such a big part of the dementia journey that we focused on a variety of things with safety specific to wandering. Yes, this definitely was worth its own episode, I believe. So let’s summarize. OK. In this episode, we talked about wandering, wandering outside, wandering inside, both during the day and during the night.

 

We shared five tips for each outside and inside. And if you have tips that you think other people would benefit from when it comes to the topic of wandering, we would love it if you put those tips out on our Facebook page or our Instagram page so that other people can have the advantage of seeing your tips.

 

We also put links to any products we talk about in the show notes, as well some of the other things we’ve mentioned will all be in the show notes. So please check those as well as links to the Facebook page and the Instagram page also are in the show notes. So this is a pretty big topic and there’s a lot to unpack when it comes to wandering. But I am confident if you leverage some of these tips and if you just take a deep breath, you’ll be able to handle this. We’re all on this journey together.