Episode Transcript
[00:00:10] Welcome back to Lewy Body and Mindful Caregiving. I'm Crystal Tchaikowski, and I'm glad that you're here today. I want to talk about hallucinations and Lewy Body in and of itself. But first, we always talk about self care. So what have I done? I've spent some time just creating, enjoying the Pottery Barn again, but also working a little bit on some projects that I want to do with welding. It's a great winter kind of thing where I can just cozy up and. And create something big. So we'll see how it goes.
[00:00:46] Hallucinations, this is our topic for today, and I don't know how long this one will be. It might be short, but it is definitely something that I want to cover because it is extremely common for someone with dementia, Lewy Body Specific as well, to have hallucinations. And how do we deal with that? What do we do with that?
[00:01:16] Hallucinations in and of themselves vary. They range widely from one end of the spectrum to another end of the spectrum. Some of them are completely harmless and little and tiny, and others are more frightening and upsetting and stressful.
[00:01:35] You cannot control what type your loved one has. And they might have totally benign, not a big deal, hallucinations one day, but then another day have something that's really upsetting. There's just no rhyme or reason to it. It just kind of is what it is. Now, there are medications that can help minimize the hallucinations, make them not as big or bad or frequent.
[00:02:06] The truth is that even though they're on that medication, the disease is still declining in the background, which means that they will eventually get worse, and you'll have to either adjust the medication somehow or switch to something else.
[00:02:19] The hallucinations themselves, they're obviously, the nature of a hallucination is that it is something that is not real, but somebody perceives that it is there. Now, this can be. I. My mom has said a few times I was sleeping last night, and I swear there were two men in the living room, and I was really scared, but then they just went away.
[00:02:43] Okay, well, I'm glad they went away, and I'm glad they didn't bother you in any way, shape or form.
[00:02:49] My mom's. Most of her hallucinations are very simple. They are not that big of a deal. It's. The pictures on the walls will crawl up the wall. They never stay still.
[00:03:03] She'll look at the floor and the patterns on the floor. The boards of the wood flooring will move. They won't stay still.
[00:03:15] It sounds pretty simple. That's not something that's terribly upsetting. It's not like a monster knocking at your door or coming at you kind of thing. It does mean that when you're in the car, if the hallucinations are going on, then the white lines and the yellow lines are moving and the other cars are moving, but they're really moving, and things are really upsetting and stressful. It could be that a car ride is just too much and overwhelming. And many of us, when we have that kind of an ooh, off feeling and we're still driving, we end up feeling nauseous and car sick, and we struggle with that. My mom doesn't do that yet. That's good. But the truth of the matter is, if I was to take her on a windy road so that we went up to Estes and just enjoyed Estes for the day, or to see the fall colors, that that windy road might be too much for her because her head can't handle all of that movement that's already going on with her hallucinations and the unsteady wonkiness that happens for her.
[00:04:22] Some loved ones might sit at the window and look outside and watch a little girl playing with a ball.
[00:04:33] There's not really a little girl out there playing with the ball, but that's what your loved one sees. And every now and then, she waves at them and that's great. Hi, I can see you. It's delightful. I'm here.
[00:04:48] These are not real to us, but they are very real to our loved ones.
[00:04:58] And the thing with that is it's really hard. You can't say, that's not there. That's just upsetting. You're completely negating their experience, and it's just going to make them more upset and more frustrated. No, they're there. I can see them. No, mom, that's your dementia. Makes her feel like crap.
[00:05:19] We don't want to do that to our loved ones. This is their reality. Oh, really? Well, tell me what's going on and how you know. Let me. What? Tell me about the girl. What. What's she wearing? You don't see the girl, but asking in that way lets them know it's okay and it's not a big deal.
[00:05:41] If it's a scary one, maybe you can work with your loved one and say, oh, that is really scary. What can we do to make it go away? Does it burn up? Does it like, poof. Did a fairy come in and add some magic and now it's gone? Like, what can we do to make it better?
[00:06:01] How can we help move them through what's going on in it being so real, so very real for them?
[00:06:17] Anytime we argue with them, anytime we tell them that it's not real, it just adds to the sad, sad, upsetting, frustrating existence that they're already dealing with. The best thing we can do is, oh, okay, semi acknowledge it and then, well, if we play cards, do you think it'll go away?
[00:06:43] How can you refocus them on something else if it's a harmless hallucination? Maybe you don't need to refocus them and it's perfectly fine to let them sit there staring out the window with the little girl.
[00:06:59] Maybe that's not a big deal and it brings them peace because they have a play friend.
[00:07:07] Maybe they do need to be refocused on something else because it's upsetting and scary and you can be there with them and say, man, that really is scary.
[00:07:20] Are you hungry? Would you like some ice cream?
[00:07:24] Would you like to eat some lunch?
[00:07:28] Would you like a little snack?
[00:07:31] I've got this and I've got that.
[00:07:35] Is there a way that you can help them through it or refocus so that it's not as upsetting?
[00:07:44] You are the one who's going to have to figure out how that works and what works for you and your loved one. It might take some trial and error, especially if you're already dealing with it or if you've never dealt with it before and the first time it comes up and you go, that's not, oh, I wonder if that's what's going on now.
[00:08:01] Because it's their world. So you pause and you take it in and then you work with it.
[00:08:14] I don't think I have much more to say on this topic. Nothing else is coming in so short and sweet today. Just want you to know that it is absolutely something that you may end up dealing with and have to work through. Remember, it's not them, it's the disease. Their brain is not working like a normal brain. And if they are having upsetting hallucinations, it is going to feed into the rest of their day and the challenge of emotions that come with that. And they don't know how to regulate the emotions because they were just frightened or worried or stressed.
[00:08:59] We end up helping soothe and nurture them. We are guiding them through this endless ocean.
[00:09:09] It's our challenge and some of us enjoy it more than others. And enjoy might be a really rough word. Some of us find ways to find the joy in it, which helps make it less difficult.
[00:09:25] Some of us are born nurturers and it seems to come a little bit easier, but even those people I know get drained and need a little break.
[00:09:34] Give yourself self care. Give yourself a little love. Give your loved one a little extra love too.
[00:09:43] Knowing that this path really sucks and you're on it together and hopefully knowing that you're on it together and that you are supported, you are not alone makes it a little bit easier.
[00:09:58] Thanks for coming and sharing this time for me with me.
[00:10:04] I think I'm going to go take a nap. I hope you have a wonderful day and I'll see you here next time for Lewy Body and Mindful caregiving. Take care.
