Episode Transcript
[00:00:11] Hello, and welcome back to Lewy body and mindful caregiving. I'm Crystal, your host, and I'm glad that you're here.
[00:00:18] Today. I want to talk about sleeping and Lewy body. And before that, we always do self care. So what self care did I do? I played with some plants, I made some new clippings, and just grounded in my space to feel more centered and happy and at peace.
[00:00:41] And I just feel like I need that. I need to be present and hear and know that it's okay. So one of the hallmarks of Lewy body is sleep disturbances.
[00:00:59] And I wanted to talk about this. This will probably a short episode today, but I still felt like it was important to talk about, at least for a minute to bring out this point for people.
[00:01:15] Sleep disturbances can be a ton of different things, and it's very common with Lewy body patients.
[00:01:24] You've heard of people who sleepwalk, people who wake up and walk around, but they don't necessarily wake up. They're just walking around. Sleep walking is something people can do with Lewy body. They might even leave their house. What do you do in that case? You might get the child locks that are super high on the door. And so they. Even though they unlock the door and they turn the handle, they can't open the door because the lock at the top of the door keeps them inside their house or their room, whatever. Um, some people have, like, sleep eating, go to the fridge, and they'll just eat and eat and eat and eat. And so their caregivers have put child locks on the fridge or child locks on the cabinets so that they don't overeat, because that can be a problem, too, especially if your loved one is one of the ones who starts to choke when they try to swallow, um, which in and of itself can be a life threatening thing. They can choke to death. So sometimes putting child locks on those helps out a lot. Your loved ones, lewy body, you can fall out of bed. And so what they encourage is they have, you can cut a pool noodle, noodle in half, and you can kind of lay it on either side of their bed underneath their sheets so that it's kind of a bump, which makes it a little harder to roll out of bed. But it's still possible other people will pull away all of anything that they can fall and get hurt on. So if you fall out of bed, you might hit your head on your end table, your nightstand, and so you might put something soft around the upper edge of the nightstand, or you might move the nightstand away from the bed a little bit in order to protect them a little bit. Maybe you put on a child rail so that they don't roll out of bed. Maybe you end up putting, like, a cushion on the floor so that if they do roll out of bed, they land on a softer cushion instead of on a hard floor.
[00:03:31] Some people will jump out of bed and act out their dreams.
[00:03:36] Their dreams are vivid and might be very disturbing, so they end up acting out their dreams. Well, this can be a scary thing because they're still asleep and it's still sleepwalking, but they're nothing necessarily awake or aware, and it's hard to wake them up because it'll jostle them and upset them, that kind of thing. And then you have to deal with that aftermath as well. So how do you keep them safe while they're doing whatever is going on? And quite frankly, if they're dealing with these kind of sleep disturbances and they're at home and you are their loved one, it's quite possible that you also are not getting great sleep because you are up and navigating. When you hear them moving, there are bed alarms you can get so that when they get out of bed, it wakes you up as well. And so you can go work and deal with them. But that means your sleep is suffering. And how are you making sure that you've got self care and respite so that you can have a break and recuperate on the lost sleep so that you aren't also struggling and dealing with new health issues?
[00:04:44] Sleep is huge.
[00:04:46] It feeds into everything else.
[00:04:50] Think about. So my mom, she was struggling with sleep, and I got her on a sleep study, and we found out that she was. She was having seven breathing disturbances every hour.
[00:05:07] And in those breathing disturbances, her oxygen would tank because she wasn't breathing every hour seven times.
[00:05:16] So we got her on a CPAp machine. Now, she didn't want to go on a cPap. She was really upset about having to go on the CPAP, but it worked, and she's now able to sleep better through the night. Before we got her on that, the reason that I worked on the sleep study was because I knew that she had never had a really good relationship with sleep.
[00:05:37] But with this lewy body, it was even prior to the diagnosis that we got her on this, she was being forgetful, and she was very foggy brained, and she was a little dizzy and a little more unsteady. And she was just struggling in general, having more headaches. There are a ton of different physiological body responses that happen when you aren't getting enough oxygen and you're not sleeping. Like when you're not breathing and you're not getting enough rem sleep, your health takes your health struggles.
[00:06:13] So getting my mom onto a CPAP machine meant that now she slept a little bit better and her memory improved, and she wasn't as shaky and she wasn't as foggy. She was clearer in her mental thinking.
[00:06:30] It was a beautiful gift just to get her on a CPAP machine.
[00:06:37] And then it was like, two years later that we end up or a year later that we end up finding out she has lewy body dementia and that that also feeds into the sleep issues that she has.
[00:06:51] I wanted to talk about sleep and lewy body because I don't know how much people are aware of this, and I I want you to be aware of this. I want you to know so that you can proactively think about what will I do when and if. What will I do when or if my loved one starts getting out of bed and doing weird things?
[00:07:16] What do I need to do for their safety? What do I need to do for my safety? What do I need to do for my peace of mind to make sure that I know that they're okay?
[00:07:27] You can dive in. You can look more up. This is kind of just a basic kindergarten, middle school level of what can happen so that you can be aware and you can work through the possibilities with your loved one.
[00:07:45] Like I said, short and sweet on this one, just because I really want to get it out there, and I want you to be able to think about it. And I hope you come back next week for Lewy body and mindful caregiving. Until then, take care.
