Dealing with Lewy Body Dementia

Transcript of Interview: “Dealing with Lewy Body Dementia: A Caregiver Story”

Mike: We talk a lot about dementia, especially Alzheimer’s, because my mom has Alzheimer’s, so we’re very experienced with that. But there are other forms of dementia, and we hear a lot about Lewy body dementia.

Kim: And there can be a lot of confusion. Today we’re bringing in Michelle Cain, who’s written a book called “Did Mom Drop Acid?” about her experience with her mom having Lewy body dementia. So thanks so much for being with us, Michelle.

Michelle: Thanks for having me.

Kim: What do you feel like were some of the most challenging parts of your mom having Lewy body dementia?

Michelle: Well, the backdrop I’ll give you was the pandemic. So it was right in the middle of lockdown and all the isolation that was happening, and so the confusion of trying to understand was she actually hallucinating, or was she lonely, or was it the effects of the pandemic? It just made it so hard to—as a daughter, you know, you put a lot of things on the shelf like, “Well, that was a little odd, but okay,” you know?

And so that was one of the biggest challenges at the beginning. And then finally we could say, you know, like, “This isn’t normal,” and we would go in, and then the next challenges happen. And getting a diagnosis, I think for a lot of diseases, not just Lewy bodies, is really challenging. And I think as a person in it, you want to have a—this is something, like, what is this?

Mike: Yeah, right.

Kim: Yeah. What difference did it make once you had that diagnosis?

Michelle: You know, thanks for asking that, because, you know, I don’t know that it made much difference on the treatment, I’ll be honest. Treatment of Lewy bodies is very limited; there’s not a lot of pharmaceuticals for it. So I had this diagnosis, and it helped me put it in a box so that I could say, “Okay, this is what this is,” and then, of course, do some research around it. But in terms of actually navigating the disease with medical, it was a little bit limited, and so I don’t know that it did that much in that realm.

Mike: When someone comes to you and says that their mom or their dad has Lewy body dementia, do you have any advice for them?

Michelle: I do. So the very first thing is what I find with Lewy bodies that makes it stand out from the other dementias and Alzheimer’s—and certainly at my age, I can’t get around friends without us having an elderly parent that we’re talking about—is two things: hallucinations, very vivid hallucinations, not just kind of like, “Oh, that seems a little delusional,” like they are really seeing things, and in their world, it’s very real.

And then also there’s a parkinsonian side to Lewy bodies, so you’ll start seeing some very small changes in them physically. So if you start seeing that, my first stop would be a neurologist, because what you actually need is a neuropsychic eval, and that comes from the neurologist.

Kim: So for a lot of people who don’t have any experience, when you say hallucinations and seeing very vivid things, what are you thinking about?

Michelle: Okay, well, I’m going to give you a very specific example that also is a little bit funny now. I don’t know that I found it all that funny at the time. But so my mom had these people that we refer to as the attic people that lived in her attic. And I mean, they were a family; there was a dad that dropped off his daughter.

And it took us a minute to figure out what she was talking about because she’d constantly be looking at the ceiling and saying, you know, “I think they’re vacuuming,” or, you know, and then as a daughter, you’re like, “I don’t even know how to interact with this,” you know? So if they’re making comments about specific people that aren’t real, that’s a red flag.

Also, my mom started talking about pets that had passed away, and not just kind of like, “Oh, you know, Portia, I saw Portia,” her old Pomeranian. It would be like Portia was alive today, and she was telling stories about Portia being there that night.

Michelle: Yeah, so like, I mean, very specific.

Kim: Very specific and very real to her.

Michelle: Yeah, very real, very real.

Kim: Yeah. How did you handle that?

Michelle: Not well at the beginning. So I think as a loved one in that situation, you so desperately want the other person to act like they used to act that you argue, you know? And you say like, “Hey, that’s not real,” and then you go through all these like elaborate explanations of why it’s not real, you know? And you get to a point in this—at some point, I probably was a little slow, you know, on the uptake on this—but you just stop arguing, because they’re real to her. And I’d find myself saying all the time, “I know this is real to you.” Because it’s just easier, and I didn’t want to spend all my time arguing with my mom.

Mike: Yeah, that’s similar to what I’ve learned with my mom with her Alzheimer’s, because whenever I visit her, she talks about seeing her mother and her daddy all the time. And “Mother the other day said this,” and “Daddy just told me this,” and her mom’s been gone for like 30 years; her dad’s been gone for 60 years. So used to that, but not hallucinations, it’s not something imaginary like you’re talking about, which has to be strange. And I assume that’s where the title of your book comes from, “Did Mom Drop Acid?”

Michelle: You know, honestly, the very first interaction we had, it was my husband and I, and we had gone to her house because we had this really strange voicemail where she was talking about my sister and I being at her house, and I live 35 minutes away, my sister is in California. And then she’s talking about how we haven’t eaten in days and we won’t talk to her. And so she leaves—weirdly, she leaves this message for my husband. So it’s this funny marital, you know, “Hey, Michelle, can you come listen to your mom on this message for me?” You know, we’re gathered around this phone, you know, being like, “What?” You know?

And so then, of course, that definitely put you in the car to head up to check on her, you know? And then we got there, and she wasn’t there, and I thought, “Oh my gosh, I’m going to have to put out a Silver Alert,” you know?

So then she’s down talking to a neighbor but doesn’t tell us, and we get there, and she’s walking up the street after we’ve looked all over the neighborhood, and she’s like, “Well, I told you in the front room that I was leaving, and I left a hat out for you and to put sunscreen on,” and there was a hat and sunscreen on her front patio. And, you know, as a daughter, you’re just like, “I don’t even know how to interact with this.”

Kim: Well, especially at the very beginning when this had not been her normal behavior yet.

Michelle: No.

Kim: Yeah.

Mike: Yeah.

Kim: Wow. Wow. How did you get through it then?

Michelle: So, one is what we were talking about. I stopped arguing. I just stopped arguing. And then I had a lot of support. One, my husband—I mean, that poor man sat on the back patio with me for so many conversations, you know? I mean, I just don’t know how people do it alone, truthfully. And then, you know, we were very fortunate to get some good care around us. So once I had like what I call the village of people around us to help, that really made a big difference.

And then also just, you know, being human, I would get in my car and break down and cry, you know? And then there were times where I thought I was losing my mind because I had interacted with the hallucinations all day.

Kim: Yeah.

Michelle: So it’s just, it’s a roller coaster.

Mike: But it’s not a game you can play by yourself. Getting that support, whether it’s from family or from other people, helps tremendously, doesn’t it?

Michelle: Oh, for sure. And even friends—I have a group of women that I would get together with, and this is during the pandemic, so that added another layer of challenge to it. And we would sit outside six feet apart, you know, with our masks on, but they were just such a help to me because I could go and talk about it, and we could laugh. We could laugh about the hallucinations, that some of them are really quite funny, you know? And then that helped me kind of get through the next week of things.

Kim: So while in the moment of being so distraught potentially and just, “Oh my gosh, what is going on?” you really found using humor, and even as you’re sharing some of the stories today, obviously things are easier to be funny later than they are sometimes in the moment, but that seems like that’s been a real tool for you.

Michelle: Oh, absolutely. And I hope it comes through in the writing too. It’s such a blessing for me because some of it is so heavy, because what we don’t always talk about is when you get a diagnosis like this, the looming cloud is anticipatory grief, right? Like, I know you’re going to die, and that’s so heavy, and it’s always there, you know? And so then I would have to find the humor in the hallucinations or the things like that to kind of add that levity to it, because then you can navigate the really hard stuff, because there is really hard stuff in this too.

Kim: Yeah. How did you find yourself sort of as becoming a caregiver? Was that something that you thought you’d always be doing, or how was that experience?

Michelle: Wow, no. And I’m glad you asked that question because I know I’m not the only person on this, for sure. I felt like it was thrown on me, and it was unexpected. I was in my late 40s, and I guess in my mind’s eye, I always pictured myself being, you know, retired, and then my parents would age, you know? And that’s not how it went down at all. It was—all of a sudden, Lewy bodies can—not all situations, but can progress very, very quickly, and that was my mom’s case. And it was just one thing after the next, and all of a sudden I was in this caretaker role, and it was really challenging.

And the other layer to that was my mother and I had a challenging relationship. You’re not always, you know, in a caregiving situation with your loving spouse or, you know, and that stuff doesn’t just go away; it just kind of has a new face.

Mike: So yeah, sometimes there’s reluctance, sometimes there’s guilt, sometimes sadness. It’s dealing with those emotions and trying to get through it while also trying to be the caregiver along the way.

Michelle: For sure. And I think what I hope people get is that there were so many times I would leave a situation and feel guilty for the thoughts I had or the feelings I had, and it’s not like you can make those things go away, but you would always be in your mind like, “Oh, be a better person,” or, you know, and then that just compounds it, then it makes it even worse. So I really—and I know I’m not alone in that—that’s not a unique situation.

Kim: Yeah.

Mike: Yeah.

Kim: Anything—what would be the one thing that you would want people to take away from the book?

Michelle: Oh, definitely to laugh through hard things, but also if you happen to be going through specifically Lewy bodies, some of the memories that I have today were built in that humor, in that rawness, and in that humor. And when I get around family even now, it’s those things that come up that we can just still laugh at, and I’m so grateful for that, because it does take away from having to have the memories be, you know, just around memory care or just around the facility or something with that. And we were fortunate enough to have a really nice facility, but I’m so grateful to have the humor and the attic people.

Kim: Right, right. Yeah. Think you’ll think of them the rest of your life, I imagine.

Michelle: I pretty much—how they’re doing. They will always be with me, yes.

Kim: Yeah

Mike: And writing the book had to help you through the process as well, getting you through this and past this.

Michelle: Very much. In fact, when I was writing the book, I never knew if I would actually ever publish it. It was more—I was writing the book that I wanted to be out there, that I was looking for. But then on the other side, it was also to, like you said, to go through the things that—like, it’s almost like journaling, right? And it really was very cathartic. But at the end of the day, once I compiled all of it and talked to people, I was like, “No, this—I think this could be helpful,” you know?

Kim: Yeah, well, I think so much of what we are all doing in this journey is, you know, we really feel strongly about that when we do talk about these hard things, we can help other people who are going through those same things too and may not realize that there is—there’s community, there are lots of other people that are having those same experiences, that once we talk about it, we realize, and that we can help each other that way.

Michelle: Yeah, sure, and it makes you not feel so alone when you’re going through it.

Kim: Yeah, absolutely.

Mike: Well, again, the book is called “Did Mom Drop Acid.” Michelle, thank you so much for sharing your wealth of information and your humor with us.

Michelle: Thank you for having me.

Mike: I think the biggest thing that you learn from this, besides the fact, again, we always talk about you need to communicate, whether it’s with other people or just journaling and writing to vent your feelings about it, just have some humor about it. And I’m so proud of my dad because when he visits my mom, it’s not easy. Sometimes she thinks he’s her father instead of her husband, but he’s able to laugh about it.

Kim: Just that guy.

Mike: That guy. But laughter is good medicine, so keep that in mind.

Kim: Absolutely. Well, if you have other ideas that you’d like us to tackle, let us know at parentingagingparents.com.

*This transcript is auto-generated. Please excuse any typos or mistakes.