What Is Someone With Alzheimer’s Thinking?

Transcript of Interview: “What Is Someone With Alzheimer’s Thinking?”

Mike Barnes: We have a special guest here in Austin, Texas today at the GPS Navigation Conference for Caregivers. Dr. Peter Rabins is here. Thanks so much for being here. You’re the author of 36 Hour Day and Is It Alzheimer’s? He’s here thanks to Arden Court ProMedica Memory Care. We’re so thankful that you’re here because you know so much about Alzheimer’s dementia and for me that means a lot because of my mom having advanced Alzheimer’s. Tell me how you got started in this.

Dr. Peter Rabins: well, when I was in medical school, I became interested in mental health and psychiatry and also in brain diseases and, Alzheimer’s disease in a sense was just being discovered then, although it had been known, and that seemed a good way to put that together.

Mike Barnes: Not known very much back then.

How much has changed as you watch this grow and the knowledge of Alzheimer’s and the interest in Alzheimer’s and the way it’s infected so many people over the last 30 years?

Dr. Peter Rabins: it’s been quite extraordinary. When we first wrote the book, back in 1981, most doctors and nurses hadn’t heard of it, much less the public. So, in fact, when we wrote the book We had to stick a subtitle here telling people this was about diseases that affect memory and other things. So now, on the other hand, it’d be hard to find an adult who didn’t know about it. It affects so many people. And I think that’s been a real plus because then people can get the kind of education and knowledge that they need through things like what you’re doing, books, conferences like this. So, it changed a lot.

Mike Barnes: What’s the biggest tip that you wind up telling people with all the places that you speak and you talk?

Dr. Peter Rabins: Yeah, I think it’s using common sense, be practical and trial and error. Those sort of together. Yeah,

Mike Barnes: I always tell people you have to live in their world, which can be difficult because you want to correct them.

You want to make things different. When my mom says something that’s crazy, I want to correct her. I want to make sure she knows. No, that’s not the case. I’m your son, not your husband, different things like that, but you have to live in their world.

Dr. Peter Rabins: That’s absolutely correct. And that’s not easy to do.And even when you do that again, sometimes. You’re wrong. I mean, you, think this is what they’re thinking and you realize after you say something, oh, that’s upsetting to them and you change it. So that’s the practical side of it and the trial and error side.

Mike Barnes: What’s the biggest thing that we have problems with?Those of us who are sons or daughters of someone with Alzheimer’s. What do we need to work on?

Dr. Peter Rabins: I think the single biggest thing that I’ve run into in caregivers is guilt. People just feeling that they haven’t done enough. Or when things don’t go right, it’s their fault, not the disease. and, that’s different than other diseases where, most family members and loved ones are able to, work with the person, and, support them. And, this disease, because often the, person with the illness doesn’t really know what’s wrong, we make mistakes. And that just naturally leads to guilt. So Being able to talk with people, be informed like this, I think is really an important way to address that guilt.

Mike Barnes: I think one of the other problems, I guess you could say, that we face is the fact that, like, so many other diseases are very similar, no matter who has it. But with Alzheimer’s, it’s so different every time you see someone else with it. And so it’s hard for me to look at someone else whose mom has Alzheimer’s and go, Oh, well that’s what I need to do because my mom is so different.

Dr. Peter Rabins: Yes, I would say that, you know, when you’re a doctor and you see many people with any disease, you do see a real range of what people are experiencing. And, you know, some women with breast cancer are cured. Others, have a disease that becomes chronic, even with the best treatment. But you’re absolutely right. and the brain is a very complicated organ. And where Alzheimer’s disease or the other causes of dementia, actually, affect the brain can have a big effect on what kinds of symptoms people have. And so there is a tremendous amount of variability and that’s one of the things I want to emphasize in my talk today because, I’m, discussing what might be in the minds of people who have Alzheimer’s as they’re, experiencing their illness, but it comes down to the fact that everyone’s different.

Mike Barnes: The big question is what are people with Alzheimer’s thinking?

Dr. Peter Rabins: Sometimes they can tell us that, especially earlier in the disease, and if they have insight into the fact that they have memory and thinking problems. So that’s the first thing, then, try to listen to what they’re telling us. But many people either become unaware that they’re sick, or it’s hard to know because they can’t express it very well. So what partly led to our writing the book, 36 Hour Day, and my writing the other book. It’s partly the belief that if you understand the symptoms of the disease, you can a little bit put yourself in the position of the person with it and think, well, what is it like to be so forgetful or to not be able to get dressed when that’s something you’ve done all your life? And so it’s trying to understand what are the symptoms of the disease and who is this person always been and how have they responded to illness or stress or positive things in the past. and I think we can then make some pretty good guesses about what they might actually be thinking, feeling, and experiencing.

Mike Barnes: To me, a lot of times, if someone talks to me about something that I know nothing about, or they’re talking in a foreign language, I kind of have a blank look, like, I don’t know what you’re saying. And I feel like when I see my mom, I go visit her in the Dallas area, I say, hi mom, it’s me, Mike, your son, that’s the look she gives me, which probably doesn’t surprise you because that’s the way they act when they have Alzheimer’s.

Dr. Peter Rabins: I think many people with Alzheimer’s and other causes of dementia live in a kind of bewildered world. They don’t really understand, why am I here? Where am I? again, so understanding that. I think, for example, just the fact that you’re, in a sense introducing yourself as her son, which I’m sure that in itself is hard. But that can ground her on, who are you? And who am I? I’m, mom. I, think that helps get you into, understanding a little bit what she needs. and, I think one of the most important things, and you sort of hinted at this, is it’s just being there and having a conversation with her. is a lot more important than exactly what you talk about. Right? You can tell her the same stories about kids or grandkids. you can talk about, the football team or whatever kinds of things she liked. And even though you might have had that  conversation 15 minutes ago, much less a week ago. She can enjoy that. She engages with you in the moment.

Mike Barnes: Which is what happens with me because my mom smiles every time because probably 20 times over the last two years I’ve told her that her daughter moved to New York City. I mean, her granddaughter did. She’s like, she did.

Dr. Peter Rabins: Right, but then that gives you a way to interact with her, you know, as people and as a mom and a child. and, again, it’s hard to remember. Oh yeah, even though we just had that conversation. This is new to her. She’s going to get that pleasure all over again. So that’s important.

Mike Barnes: Tell me about your books, and everyone knows, or I think a lot of people know about this book. This book, they may not know as much about. Tell me about why you wrote two, and what the process was along the way.

Dr. Peter Rabins: so as I mentioned, we first wrote this in 1981, so that’s a long time ago. And, over time we’ve learned a lot, and so it’s gotten bigger and bigger. And I think for some people that’s intimidating. and when I give talks, like I am today, the questions people ask are what they really want answered. And so, I got the idea, well, why don’t I just take the hundred or so most common questions I get, and answer those in one paragraph. And so that’s how this came out. It’s much shorter, it’s to the point, you can look in, you don’t have to read the book. If you don’t want, but you can look in the index if you’ve got one question and try to find the answer to it there.

Mike Barnes: That’s great because again, so many of us who have parents with Alzheimer’s have those questions. And sometimes they’re just so simple and you have all the answers and we’re so appreciative for that. What comes next for you?

Dr. Peter Rabins: I continue to educate. I’m not practicing anymore or seeing patients and their families, but I continue to teach. At the medical school where I worked. And, I continue to write. Both of these books, excuse me, both of these books are being revised. And so, new editions will come out. Because there’s a lot of new information about blood tests and, brain scans, PET scans, and treatments. So, I also try to keep up with what’s new.

Mike Barnes: Well, thank you so much for all that you do. For those of us who are very affected by Alzheimer’s and dementia, it means a lot to us. If you have any other topics you’d like us to discuss, please let us know. Parenting Aging Parents.

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