Anxiety, Dementia and Care Partners with Pete DCalke

Are you caring for a loved one with dementia? You don't have to figure this out all on your own. Welcome to Truth, Lies Alzheimer's, the show that helps you reimagine a new relationship with your loved one, a relationship a little more free of stress and anxiety. Join host Lisa Skinner and her 30+ years of experience as she guides you on a new path to a better relationship with those you care for. Here's Lisa.

Welcome everybody to a brand new episode of the Truth, Lies Alzheimer's Show. And I'm Lisa Skinner, your host. I'm really, really excited about today's discussion because I have a very special guest here with me today. His name is Pete Donke, and he actually is the host of his own podcast called Pete Versus Anxiety Podcast. And interestingly enough, I met Pete at a national publicity summit where Probably 80 or so of us were introduced to podcasters and television producers and things like that to hopefully be invited onto their platforms to have a discussion. And Pete and I discovered that we had something very, very, very much in common. Pete's had two of his grandmothers who have been diagnosed with one of the brain diseases that causes of dementia. So we hit it off immediately, and then we decide— he, he decided that June would have been a great month, was a great month to have me on because it was Brain Health Awareness Month, and we dedicated the episode in honor of his two grandmothers. But let me just tell you real quickly about his podcast. He hosts a very bold and uplifting weekly podcast that tackles the realities of mental health head on. Each episode dives deep into meaningful conversations, blending heartfelt storytelling with expert insights to break down stigma and spark connection. Is any of this sounding familiar with My podcast? Yeah. So across the board, I think we can all agree that whatever it is that's causing a person's anxiety, there definitely is a connection between, you know, the other things that are going on in a person's life and Alzheimer's disease and dementia. You know, caregivers, family members, they experience one of the highest burnout rates from caring for people who are living with cognitive impairment. It's so, so difficult because you lose the ability to communicate, and it just makes it so, so difficult. So we're going to start off by welcoming Pete, and I'm just so, so grateful that you were able to come onto my show and we can talk about this further. But why don't we start off by you sharing with us the experience you had with your two grandmothers and why this has, you know, really resonated with you and this topic?

Well, you know, when they were going through it, it's hard to watch because you remember what they were at one point. You know, sweet, loving, things like that. But then you start to realize that they forget who you are. And it's like you have to constantly remind them, hey, I'm so-and-so, which, you know, a lot of us thought it's just, okay, getting old, but it's not. For their situation, it was even worse. You know, I remember hearing stories. My sister stayed with one of them and she was trying to kill her in the middle of the night. She was literally just chasing her around the house, like, you know, kind of thing. And I'm like, yeah, that doesn't sound great. You know, underneath those woods.

Wait, your grandmother was chasing your sister around the house and she, really felt threatened.

Grandma was thinking that, uh, Grandma Neal thought that my sister was somebody she didn't know it was because she remembered. Yeah, she, she just didn't remember. Yeah, that's very common. Yeah, she had no idea who she was. So she's like, I heard, I heard a story where my sister was telling me she had to put locks on the door at night because she was afraid she'd get up in the middle of the night not realizing who she is and try and do it again. I was like You know, and it's, it's always like you hear these stories, but like we, we covered in our episode, like, you know, not a lot of people have a lot of information about these things, you know. Yeah. Uh, and then my grandma Betty on the other side, she, she had really bad memory loss, so she started really forgetting who everybody was. So we had a memory book that we had put together for her that she could remember where everybody was. So we all contributed our own things, and, you know, we all remember her, you know, because she was always welcoming, always doing different things for us to make us feel welcome to come visit her and things like that. But to watch her slowly deteriorate, it was just, it was hard because it's like, you know, the person who you knew she was, she's not that person anymore. She just kept forgetting who everybody was little by little. And you know, the book was a nice constant reminder. And when she passed, I actually have the book in my own, uh, my own way of things. I have all this, all the book and all the pictures and stuff that are in there. So it's really cool. So I could look back on it, you know, and show it to my kids and be like, cuz they didn't get to meet her, you know, they just knew like my mom had grandmother had passed, didn't know really know her cuz they were still kind of young. So it was like, this is a good way to remember who she was.

That was her legacy that she left behind for your children. So her memories will live on indefinitely. That was a great idea. So, Pete, let me ask you this, because a lot of— over the 30 years that I've been helping families, a lot of them have said to me, it feels like I have lost my loved one not once but twice. Because when they're still with us, they can't remember us and they lose themselves. They lose the ability to recognize their loved ones, and then they eventually pass. So it's like we have to really go through the experience of grief twice. Does that resonate with you? Did you feel that way at all? Can you—

Yeah.

Can you kind of expound on that for, for us?

It's, it's hard because, you know, remember now, if you, you were— when you're a kid, you remember her being someone else, and now, now you're as an adult, you understand these things, but you're watching her deteriorate. So you've already lost the original person you saw, and now you're seeing this new person who has no idea who you are and can't remember things and has moments where she doesn't even know where she's at, freaks out, and, and things like that too. I know a friend of mine in Canada She stays with her dad now and he's the same way sometimes. She says he has episodes and things like that. And it's hard because you really do lose them twice. Like I said, you're losing the original person you knew and you all grew up with to now she's somebody who can't even remember your own name and you have to constantly remind them like, "Hey, this is so-and-so." And even at that, she still may not even remember you after you've been reminding them of that too. And it's tough for a lot of people to understand. And then when they pass, then it's like you're grieving twice because the person you remember her to be versus where she was at when she eventually passed, you know, that's why when people pass like that, I always tell them, just remember the good things that they were. So, you know, that's the lasting memories we all try to keep are the great things that they were, not what unfortunately had happened later on where you're slowly losing them and they're losing it themselves, you know. So you got to constantly play, you know, hey, listen, remember this is, you know, and it's stressful at times because you don't know when it's going to happen. And with anything, it's hard. You know, you go to that moment where you're like, you know, it's unpredictable with most conversations go, you know, it's very unpredictable. You can't predict when they're going to do something, you know, and they'll have episodes and things like that too. And you've just got to kind of play it by ear.

Yeah. And I've had a lot of adult children and partners of people living with dementia They say it's one of the worst hurts that exists. It cuts to the core when your loved one doesn't even recognize you as their spouse or their mom or their dad. But I think one of the things that we just have to continue to remind ourselves, and you mentioned it earlier, that the resources are limited and the information is limited. And that's why I always, always emphasize learn as much as you can about what it's truly like for people to live with these neurocognitive diseases that strip us of our cognitive abilities. Because this, what we just talked about, you and I, this is part of the disease.

Yeah.

And I think a lot of people who don't— aren't expecting it, or not quite wrapping their heads around that concept. They just feel so hurt that this person that they've had a relationship for a very, very long time all of a sudden doesn't know who they are. So it does— I don't know that it makes it any easier, but if you can constantly remind yourself that this is the disease that you are experiencing, that you are witnessing, it might make it a little easier to accept.

Yeah. Yeah.

What would you say to that?

I'd say be very sympathetic, you know, understand, like you said, you know, we have all these great devices in our hands, but we can't take 5 seconds to learn what these people deal with, you know. It's similar, like, when I, when I deal with people, I talk to people about BPD, it's like, take time, the same thing, learn what these people are going through. I think those are all great points, you know, like, Take 10 minutes to realize that this ain't about you anymore. It's about them. Once you understand what they're going to be going through, prepare yourself. And like we discussed, there wasn't a lot of information out there. It's crazy that there isn't. It's like this has been around for a while. Things like this have been happening, but there's still not a lot of knowledge that's known about it, or we're not educating enough people, or people don't even take 5 minutes to look for this. With the internet being a fast place, you can go to Google, type in You know, whatever you're looking for, and you'll have access to everything at your fingertips. But nobody wants to do that because their first reaction is, oh my God, they forgot me. But it's like I said, it's not about you anymore. It's about them now. You have to understand that that person you once knew is going to slowly deteriorate and it's going to be a rough ride. It's never easy. It's just like having cancer. Think of it the same way. These people are going to deteriorate little by little and you're going to have to prepare yourself for what may happen next because you don't know when they're going to leave you at any time. And it's hard. It's never easy losing people.

Wow. So this probably hits close to home for you because you host your own podcast and live in the world of anxiety from a lot of different perspectives, right? I don't know how much, how many people that you speak to are actually feeling anxious and nervous and frustrated because they are, they really are experiencing, um, the world of dementia. But I think it's all interrelated. So, um, I think we'd all love to hear more about, um, how you help people and the types of, you know, predicaments that your clients, your listeners come up against, and the professionals that you have come on your show as guests, because I think that there's a common thread with all of us, no matter what's causing the anxiety. So let's, let's speak to that because they hear me all the time about dementia, but, you know, we're, we're kind of approaching this from a completely different perspective. And I can't wait to hear how you have seen that, that this topic is, is really, they're, they're interrelated.

Yeah, they are very much interrelated. Like, you know, you have to think that a lot of people go through depression as well. So losing people, things like that. In the show, we've covered— God, we covered everything. I— when I did the show originally, I set out to have the conversation to break the stigma about mental health. Later on, I decided to go even bigger. I'm like, you know what, let's invite the most interesting people I can find, different stories, you know, and just start to understand what some of these people deal with, you know. Like, like BPD was one I had an expert come on finally, uh, Dr. Jenny Bellinger came on, and we were talking about that. That was a whole interesting thing because I was actually in a relationship with somebody, and I, I was talking to her about it a little bit, about what it, what it was like, because a lot of people demonize that as well, you know. Then we've had somebody come with OCD and explain to you that OCD isn't what you think it is. All these little cute comments of, oh, I'm so OCD, is really hurtful to them because you have no idea what these guys are dealing with, you know. There, there was a girl last season we had, she was like— we were starting to talk about something else and she got into the story. Like, once you hit record, this thing goes anywhere. She went down the story to tell us that, you know, something had happened when she was 6 years old, didn't know about it until she started doing hypnotherapy, you know.. And then we got into a whole conversation about that for 50 minutes. And it was like, it's an emotional roller coaster. It's rough, you know, and my anxiety level's through the roof because I'm like, oh God, where's this thing going next? Because you don't know where these conversations are going to lead you to, you know, you just kind of had to, you know, when you hit record, when we're doing this show, it's like, get ready because we don't know where this is going to take us depending on what it is they're dealing with. I've had people come on with DND, which it used to be called multiple personality disorder. And those were interesting individuals as well, because if you watch them, it's more of small little tics and things like that. You know, they talk, you know, you have to notice these things. But after a while, you know, I start to understand like where a lot of these conversations are going so I can anticipate a little bit of where we may go. But there are some that have left me speechless for a little bit. I was just like, whoa, wow. Because it's this, this is someone's life they went through. There's people that go season 1 or season 3's first episode. She came on. And she dropped a bombshell on us. She had gone through drug addiction, everything under the sun. This girl had been through everything and then told us, you know, what she tried. She tried to take her own life and described exactly how she did it, everything else. You know, it's like you get into those conversations and it gets intense, you know. And, you know, some days when I'm recording like 5 or 6 of these episodes, it's like, it's a rough day for me some days. So sometimes I have to check out and reschedule things, which, you know, it's a great thing about pre-recording stuff is I can, Hey, listen, I'm not, I'm not gonna be able to give you 100% Pete, you know? And usually it's because I've gotten into an intense conversation of narcissism and, and some of those other ones are really hard for me to get through. Those conversations are tough because I've lived through that stuff. It's like, you know, you're reliving it in your mind as you're, you're going through these things, you know? And these people are telling their side of the story, how it is for them. And when you start relating to a lot of them and it's like, it's, it's tough because being an empath, I feel a lot of those emotions. I, I can go most places, I can feel the energy of everybody around me and things like that too. And it's, it's draining some days. You know, I love what I do. I love what I do, though. Don't get me wrong.

I totally relate to what you're saying, Pete, because I absorb people's emotions too, and I have my entire life, and it is draining. And it's not something that we really have control over. I don't think there's an off button. It just, it's just, it is what it is. But it's, some people say it's a gift. I don't know if I consider it a gift because I mean, it drains you.

Understand things from other people. You, you're more, you're more in tune to what people are telling you. Now, there's ways to protect your energy. I've had a lot of energy healers come on and different people that do energy work type things have told me different tips on ways to protect your energy. So if you go somewhere, you don't feel as drained. But it's still a conversation at the end of the day. You're still feeling your emotions of what's going on. These people are coming on and telling you their stories about what they've been going through, and some of them, they, they really pick at heartstrings. I think the only time I've ever shed a tear on the show was I was talking talking to a woman named Tiff Carson during the first season, and she was talking about her brother and his drug addiction. And it was, it was rough. It was a rough story to listen to, you know. And I was choking up on the camera with her, but I was like— it— because you feel it. These people are telling you about what is going on, and it's, it's crazy because, like, at the same time, you know, it's like you don't know what people are going through. Because if you look at it like the internet now, most people will tell you that everything's great, but really, in the back scene, it could be a complete mess. Because no one wants to talk about these subjects. And it's the whole idea of the show is just that, to create that safe space where people come in and we could talk about anything and you're not being judged. Because I, I understand a lot more than most people do, you know. I've been there for a lot of these things. I've been through my own journeys of things too.

We have covered a lot of mental health conditions that exist, um, and people live with day after day after day. We talked about multiple personality disorder, we talked about narcissism, we talked about, um, OCD. If there is one thing, or maybe a couple things, that you've learned— as you've mentioned that you've lived with a lot of, um, things yourself, experienced it What would you want the listeners who are tuned in today to know about living with one of these mental health disorders? What they should do, what they shouldn't do? I know that each condition is different, but there's a lot of commonalities between them too. So what What would you say is the most important piece of advice you could give people who don't know what to do? They don't know how to deal with whatever it is that's causing their anxiety.

I absolutely love this question. You know, since starting the show, I've learned a lot of things. Breathwork, for example, is really great for those moments when I feel like my heart starts racing, when I know I'm close to an attack of some sort. You know, just— and it's real simple. You breathe in, you know, all these kind of things. I do journaling as well. Journaling's really great. Just get the thoughts out of your head, basically, is the idea behind this. I meditate a lot too. A lot of people, I tell people, I meditate and talk to my inner child and things like that. It helps reduce that thing. But I can tell a lot of times, I can tell when it's coming because I know what signs to look for. If you're experiencing anything like that, my first suggestion is to get some help. We all are out there dealing with these things. But if we don't know what you're dealing with, it's the hardest part. You know, don't feel like you're alone either because there's plenty of us out here that deal with things that you'd be amazed that a lot of people won't tell you about, you know, and things like that too. You're not alone, honestly. And it's okay not to be okay. You know, you hear a lot of people say that, but it's really the truth is that it's okay not to be okay. You know, if you don't know what it is that you're dealing with, you know, and then you find out how better to attack it, you'll find that your life will be a little bit better. I pushed it off for like 39 years. I didn't even think about it, you know. I had an incident happen when I was 10 that caused these things to just build up, you know, and it was horrible. But now I have better control of it. People come up to me and tell me how different I am versus what I used to be. And they always ask me what I did differently. And it's like, you know, now that I address my anxiety and everything else, I don't feel so, you know, I don't feel like it takes control of me. So the idea of the show, like it's called Pete vs. Anxiety because every day I battle my anxiety. Some days I'll wake up and it's it's full throttle, sometimes it's not. Sometimes I could wake up in the middle of the night, you wake up, my heart's racing and I can't go back to sleep, but it's like a trigger that something's going on I need to be alert of. Turn it into a superpower like I did. If it wasn't for me having anxiety, I wouldn't have this show, I wouldn't have this opportunity to meet people like Lisa Skinner and everybody else I've met through all this time doing the show. It's been great. I make new friends all the time. I have new podcaster friends I have too. I have other people that go podcasting because of me and they ask me all these different things. But understand, you can expand your toolkit. Uh, there's plenty of things you could do out there. I have an anxiety journal a friend gifted me in the beginning of this show that I used to— it helps make your thoughts retrain, redirect your thoughts to other places. You know, sometimes, uh, people could see me talking to myself out loud, and it's like, well, what are you doing? It's because I'm getting the thoughts out of my head. Um, I used to do, uh, what I call downloading my brain to people too. I'd send sound clips of just random thoughts coming through my head, and it'd just be complete gibberish. And my friends knew what I was doing because they're like, if you get a message from Pete at 2 in the morning and it's just a WAV file, you know exactly what you're about to get. It's probably just complete chaos, but it's the thoughts that are going through my head. And if I get them out of there, they won't be bouncing around and cycling through and things like that, you know. And we all deal with it differently.

You know, I think a lot of people, I think a lot of people listening to this today can completely relate to a lot of things that you just described. We are Running out of time, but before we wrap, I just want to ask you one more question because I think you're, you're an ideal person to address it. What is your feeling? You probably have a lot of people who— you mentioned it earlier in the conversation, um, what, what is your— what are your thoughts about repressed memories? Do you think it's a real thing? Because there's a lot of controversy out there about it. I personally believe it's a total real thing, and it happens to a lot of people. But what are your thoughts on that?

I agree with you. I think it is. A lot of times, you know, they talk about the, the brain cuts off these memories, and they're still there to protect us. Exactly.

The way that we protect ourselves.

Yeah, I think I, I— it's, yeah, it's got to be yes, because if you think about it, the way that works is that the brain cuts it off and it goes to your subconscious, and in your subconscious is where a lot of that stuff will be, you know. And a lot of people don't realize your subconscious is way more powerful than your, your other parts of your brain and things like that too. But that's why hypnotherapists, when they go in there, they have to be careful because these memories are in there and they unlock them, and then they— you find out that, okay, well, something happened that my brain cut off, but my body remembers, you know. And a lot of times, you know, like, how do you explain that to somebody then? Exactly what it is, a repressed memory, because it's there It's still there. It still exists. It just— you just don't remember it because they cut it off to protect you.

You know, that reminds me of a lot of examples that I've used in my show of, uh, be careful not to correct somebody who is having a delusion or a false belief. And a very common one is that, um, your loved one might tell you that their spouse is waiting for them at home, but they really passed away years earlier. And they're telling you this. And can you imagine? This is reminding me, and the connection between that and repressed memory. If we try to correct our mother, let's say, and say, Mom, what are you talking about? Dad passed away 5 years ago. And she believes wholeheartedly that Dad's waiting for her at home, you might be telling her something that actually throws her into a panic. Like, what are you talking about? What happened? He was fine when I left him this morning. Now you're telling me he's gone? So be careful with the correcting because I want to emphasize, if they're telling you something that doesn't make any sense to you, they believe it wholeheartedly. This is their reality, even if it's temporary. She could snap out of it in the next minute and you know, come back to the same reality that, that, you know, you're living in. But if she's telling you that something, she believes it at the moment. So I think that this is probably another example of, you know, a professional needing to work with somebody very carefully and very cautiously who actually has buried something into their subconscious. And when it's brought to light, you don't know how they're going to react to it, right?

Mm-hmm. No, I agree 100%.

Yeah. So anyway, this is a great place to wrap this conversation up. It's been extremely insightful, extremely powerful. I hope a lot of people at least picked up some golden nuggets from it today, but Thank you so much, Pete, for coming on the show today. Where can people find you? I think that you probably have some people that want to, uh, check you out and listen to your podcast after today's episode, right?

Guys, very simple. Spotify all the way down to iHeartRadio, Pandora. I'm everywhere you can find your podcasts at. YouTube if you prefer the video version of it. Um, if you need to, just go to PeteForstAnxietyPodcast.com, but I'm on every social media site possible. So you can find me anywhere. I made it accessible to everybody because there's that, oh, I use Amazon. I'm everywhere. I promise you, I'm everywhere I could possibly be at this moment.

That's great to know. So great resource for people, caregivers, family members dealing with anxiety every day. Now you have another resource to turn to, to maybe help you through that aspect of being part of the dementia world. So thanks again for being here, everybody. Thanks again, Pete, for coming on and contributing your valuable insights to us. And I'll be back next week, everybody, with another brand new episode of The Truth, Lies Alzheimer's Show. I'm Lisa Skinner, your host, and have a great rest of your week. Try to stay happy, try to stay healthy, and we'll be back next week with another episode. Episode for you. Bye for now.

Thank you for listening to Truth, Lies Alzheimer's. We hope you found something in today's episode that helps. We understand that caring for a loved one with dementia can be the challenge of a lifetime, but you don't have to do it alone. If you're ready for exclusive access to even more great content and resources, head on over Facebook and join Lisa Skinner's Minding Dementia support group. We're a community of like-minded caregivers, and we're here to help.