Virginia and Steve are joined by Patti Davis, author of the book, Floating in The Deep End, and daughter of former United States President, Ronald Reagan. She recounts several different experiences she had while caring for her father who publicly lived with Alzheimer’s disease. She also provides the listeners with sage advice she learned from her caregiver journey and from her time with Beyond Alzheimer’s, a caregiver support group she started at UCLA. To learn more about Patti’s experience, purchase her book, Floating in the deep end: How caregivers can see beyond Alzheimer’s visit: https://www.amazon.com/Floating-Deep-End-Caregivers-Alzheimers/dp/1631497987
From the University of California, Irvine, this is UCI MINDs, spotlight on care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias.
Welcome to spotlight on care. I'm Virginia Naeve, and I'm here with my co host, Mr. Steve O'Leary. Today, Steve and I are happy to have a very special guest with us. We are welcoming Patti Davis, daughter of former United States President Ronald Reagan. Patti was a very involved caregiver for her father after he was diagnosed with Alzheimer's disease. And later, she started a support group called Beyond Alzheimer's at UCLA Medical Center to help other caregivers. Patty wrote a book called “Floating in the deep end”. And I personally found it profoundly helpful and beautifully written. While reading it, I was wishing I had been able to refer to this book while caring for my mom who had Alzheimer's disease. Welcome Patty. We're glad you're here.
Thank you so much for having me.
You bet. Patti, tell us how the journey of caring for your father began. And tell us how you continued to help other caregivers.
Well, my father was diagnosed in 1994, when many people had Alzheimer's and many people were caring for people with Alzheimer's or other forms of dementia, but no one was really talking about the disease. So when he put out his letter, saying that he had Alzheimer's, we, we kind of became the poster family for for Alzheimer's. I was living in New York at the time. And, you know, I, I sort of felt like, Okay, I'm on a journey that I know nothing about. And sometimes people will tell me little snippets of information, but no one will really tell me much. I kind of felt like I was in the French underground, people only giving me partial information. So I really had to kind of chart my way myself, which was challenging and lonely. Ultimately, I think it was probably a good thing, because it did help me form the principles that down the line would would create Beyond Alzheimer's, my my support group, absolutely, I started flying back and forth from New York to California until I couldn't afford to do that anymore. And then I moved back to California to be closer to my father. And, you know, a couple of the things that grounded me for the 10 years that it turned out, the disease stole from him, was that I didn't believe that his soul could have Alzheimer's. It's partly why I ended up calling my support group beyond Alzheimer's because I wanted people to look beyond the disease. So I believed there was a soul there beyond the disease.
Oh, I didn't know that's how you came up with the name. Oh, I love that. I love that.
The other thing that I that was really sort of my mantra for those 10 years was, was I don't know, I don't know what I'm going to face. When I drive up to my parents house that day. I don't know how my father is going to be. I don't know how I'm going to feel about how he is. But I'm willing to learn, I'm willing to grow, I'm willing to try and accept whatever it is. And that I think was more helpful than I realized at the time. Because it takes you out of that the mode of sort of making decisions that you have no business making, obviously, a lot of decisions have to be made in the realm of dementia and any form of dementia. But I think people tend to decide, you know, how they're going to feel about something. One one big thing that people hold up and I heard it again and again in my support group was when my loved one forgets my name when they forget what when they forget my name that then I'll consider in home care when they forget my name, then I'll then we'll talk about whether or not we should put them in a facility because it's going to be devastating well, ultimately, they probably will forget your name, but they could be burning the house down by that point. So to to hold that up as this sort of guidepost. You don't know the sequence of a disease. You don't know what's going to happen when and you also don't know how you're going to feel about it because that's the other thing I'm going to be devastated when they don't when they, when they don't remember my name. Well, how about not deciding how you're going to feel?
You took a giant leap faster than I did, it took me a lot longer. This is what I mean about, I wish I'd had your book. It took me a long time to learn. But that is the way to start this disease, not pick it up in the middle of it, for one minute, they can seem absolutely 100% Fine. And the next minute, you know, and everybody else is telling you, there's nothing wrong with your mother. There's nothing wrong with your father. And then the next minute, you're scratching your head going, what was that? I want you to tell everyone about the the visit from the physician with your father. And you just couldn't believe what was coming out of his mouth do tell us?
Well, I was still living in New York at the time, I had flown back to California. And I was sitting in xxx my parents house, just my father and me and the doctor, I don't. My mother was not in the room. And the doctor started talking about my father in third person in front of him and saying to me, Well, have you noticed any decline in him since the last time you were here? Because you're not here consistently. So you know, you just you come in and out of town. So you would be you would notice more than other people. So do you notice like, you know, have you noticed him getting worse? And I said, my father, he's sitting right here And you're talking about him in third person. And the doctor looked at me like I was crazy. And so he doesn't understand what we're talking about. I said, How do you know? And then he really kind of got pissed off at me because it was like, I'm a doctor. So I know. And I said, No, you don't know. I said, there's a soul in there that doesn't have Alzheimer's and this whole time, my father was looking at me with his very, very direct point of look. And I believed that he and still believe he understood everything that was being said, whether he could cognitively process it or not. He understood everything that was being said he was kind of he was kind of waiting to see what I would do, which emboldened me more. And I mean, at a certain point, there was no point saying anything else to this doctor, because we were miles apart. And I, he was released as my father's doctor shortly after that. I did tell my mother about that. But I don't think that was the entire reason she fired him. I think she fired him because he didn't return her phone call rapidly enough. It may have a phone call, that was the last straw, but I think I xxx
Well, you you had mentioned that, you know Alzheimer's disease will be in control. And if you are a controlling person you are in for a bumpy ride.
Yeah, this disease brings up everything, it brings up everything in the person who has it. I mean, you it's a peeling away of everything. So you get to see the essence of that person, which can be a good thing or a bad thing. You know, people have discovered things about their parents that they didn't know like, they were a racist and stuff now. But it also it peels away everything in caregivers, you know, I think that you have to look at that as as a gift. Because you're being asked to be the person who you were meant to be. I remember somebody in my support group talking about getting finally getting in home care. And then they said, Well, this is even more exhausting, because now I have to monitor the caregiver. And I said, Well, you either got the wrong caregiver if you have to monitor them, or you just want to monitor them. And they said, Well, no, they're doing an okay job. But instead, I'm just a very controlling person. And I said, Well, you know, there's the way that we are, and then there's the way that we are supposed to be. And usually there's a lot of distance between the two. I don't think God put anybody could put people on earth and so okay, you, you're going to be really controlling, and you are going to be really insecure. And you're going to have an anger issue, you know, right, we develop these things, and then we're meant to correct them and, and work with them.
I think you're on a really, you know, important point for our audience, which is this whole idea of putting yourself second and putting you're the person you know, that you care for first and thinking about them rather than thinking about yourself and it's not an easy transition to make. But how easy Was that for you?
Well, the thing is, you can do both.
Okay. Oh, good point
you can do both. I mean, there's not we're not that limited that we can only think about one person. And, you know, the idea of I have to sacrifice everything in my life because my loved one is ill makes no logical sense. First of all, how is that benefiting them? It's not. And, you know, you, you are a human being on this earth to you get to still have a life. I know, you know, when my father was first diagnosed, and as I said, I was living in New York, I was sort of overwhelmed with sadness. I mean, I didn't, I mean, I had these thoughts about how I'm going to progress through this journey. But, you know, emotionally, I was really kind of consumed with sadness. And that's sort of what I carried around with me all the time. My father has Alzheimer's, I, it's like, I have to be this sad person. And I wondered why nobody wanted to spend any time with me. Because I really wasn't very much fun to be around, you know,
what people don't know what to say either. They, they don't know what they're sorry for what you're going through. But what are they? They don't know what to say?
Right, that's true. And I think that, that, that also you have to, I think this takes a little bit of time. But I, I've written about this, you have to kind of choose the people you talk to about this. If somebody has no experience with this disease, that is not the person you want to talk to someone who has either has no experience with grief, which would be unusual, what would be more usual, as someone who has had the experience with grief, but has pushed it aside and hasn't embraced it? That's not the person you want to talk to. Right. You want to talk to people who you know what, that's the point of a support group, you know, everybody's going through the same thing. And there's an openness of, of communication. And I kind of learned that the the hard way, you know, there were people who said things to me that were very inappropriate. So yeah, you know, you have to, you have to choose your but But you, you have the right to enjoy yourself, you know, you can grieve and still go out and have a nice time with your friends. There are a lot of colors on that palette of, of grief. And we tend to think in very narrow terms. It's like, okay, this is just a really dark, sorrowful time. Well, there is darkness, and there is sorrow, but there's a lot of other things too.
Oh, I know, I have several points, I want you to tell our listeners about finding that little spark of joy or laughter or humor. It's not easy, we get it, we get it. It's not easy, but you found a way to do it. And I do want to bring that up. It's, it's my thought that most people really have no idea what's in store for them while caring for someone with dementia. But you have so many good helpful tips and ideas, what you learned, of course, from caring for your father. But you also gained a lot of knowledge from your support group, which is which is really helpful and wonderful. Okay, so you brought up a lot of things about making the home while they're still at home a safe place to be and you brought up things that I hadn't even thought about. Can you
Like the door locks?
Yes. The bathroom door lock from the inside. Okay, a lot of people these days. I hate to say this, but they have weapons at home.
Yep. Yeah. Okay, so that would be right up there on the list with taking the car keys away. You know, if someone has weapons, you need to get those out of the house and the ammunition. And, you know, think of kitchen utensils as weapons also, you know, think of when you childproof your, if you childproof your kitchen, when you when you had kids, but you have to be more creative because this is an adult, even though they have dementia. This is an adult so that little plastic thingy on the door is not going to it's not going to work, you know, take the knives and put them way up. You know, get them out of reach.
power tools, also. Yeah, I mean, I, I can't remember if I wrote about this, but I think I did, about the sign the wall.
Yeah, the man who wanted a bigger room where he grew and
Bigger room and took a chainsaw was like, yea sawed his house up. Yeah.
Gosh, people don't think of these things. That's very practical advice, because we don't think of those things. And you think oh, yeah, I can have a knife in the kitchen. No, you can't.
Right. And the lock on the bathroom door, you know, it's just rote for people to go into a bathroom and lock that so so it's not so cognitively, someone who doesn't even have to think about that because it's so ingrained in them. But then they might not know how to unlock it or and they might not want to unlock it. And then you know, you're gonna have to call a locksmith, you're gonna have to break the door down or something, you know
people don't think of these things
Right. And any other interior doors, obviously you don't want to take the lock off your extra door. But you know, any other interior doors that have did have locks on them.
That's right. And even alarms. We just had a guest tell us about how her husband got out, even with the house alarm in the middle of the night. he got out and fell and broke his nose. Yes. It was tough. Okay, the concept I had not really given much thought to this one. But the concept that the world gets smaller. Now the story about the drive to your beloved Santa Barbara ranch with your dad. Tell us how that went?
I wasn't there for that my mother told me about.
Okay. Tell us about that.
Yeah, she told me that she was they drove him to the ranch thinking that, you know, he would be happy there. And the drive up was just apparently, according to her absolutely excruciating because he was so alarmed at being taken out of his home environment, which was his security at that, at that point. It's all about, you know, it's all about security and where the person feels secure. And so the world does get smaller for them. Because, yes, you know, this, this home where they feel secure this room is where they feel secure. And then you take them out into the wide open spaces, which of course my father always loved. But suddenly, it was, you know, we're driving up the coast highway, and there's just space on and there's an ocean on one side, you know, he didn't, he didn't know what to make of that. And he panicked, Yeah, it was, it was last time they they took him there.
Did they turn around and just go home?
No, they didn't. They went all the way up there. I think he calmed down a little bit, once he was up there. But I think they came back the next day or something
kind of along the same line is you bring up solutions for unexpected fear of something, the drive to your dad's office, and he didn't want to get out of the car.
So I went to visit him when he was still going into his office, I went to visit him. And the Secretary said, Well, he's in the parking garage, and he won't get out of the car. So and they can't the Secret Service agents don't know how to get him out of the car. So maybe you can go down there and try something I thought, Okay, well, I don't know what I'm going to do, but I'll try it. And I got in the backseat with him. He's obviously agitated, he kept pointing at one of the walls or doorways or something in the underground garage, there was obviously something he was afraid of. And he couldn't communicate it because he kind of had a bit of word salad at that by that point. So there really weren't any words in there that gave you a clue. But his fear was very evident. And I just tried something I just I said to the agents, you know, what can we get out of here? Let's just drive around the block, and then come back and see what happens. Excuse me. Um, and, and they did. And it was in Century City. So driving around the block, it's not a quick thing. It's kind of a big block, and there's traffic. But it was a change of scenery. And when we got back in, he was okay.
Wow. And he just got out of the car.
Yeah. You know, I just thought well, and, you know, now obviously, a lot of people have figured that out, and you just change the scenery, and then they see something different. And they forget what they were upset about.
You talked about ways to get them out of a mental loop
Yes. And that's, that gets down to changing the scenery too and sometimes it works. And sometimes it doesn't. But that's your best bet. You know, take them, take them out of whatever room they're in, show them something different. Take them out in under the trees and talk about the birds in the trees are taught, you know, try to redirect their thoughts and redirect visually what they're seeing because what they're seeing visually does matter. And that does, you know travel into the brain, right. So it's basically just an exercise in distraction. And like I said, sometimes it works. Sometimes it doesn't. They're not going to hold on to what are this loop forever. They might hold on to it a lot longer than you want them to But they they will get out of it eventually. But those are the tools at your disposal to just distract them.
He was watching a football game one day.
Yeah, I wasn't I again heard about this from my mother. And I know, listen, nobody knows how to deal with this. Initially. I mean, that's why I was why I wrote this book is why I started a support group so that people could get help in these situations. And I don't think anybody knew how to how to handle that when that happened. And there was a football game on television, and my father was watching it, and he thought that he was supposed to be and he thought it was his college football team. And he was supposed to be there in the game. And he was very upset that he wasn't there. You know, my, my mother was trying to tell him that. It wasn't that it was a television game and stuff. And I think I think sometime later, I ended up talking about because I think he referenced it. And I and I said to him, I said to him, Well, oh, you know what, you are going to sit out that game. Yeah, you were gonna sit out that game. So you never want to like invalidate what their misperception is, because that's how they perceive it.
See, that's what took me a while to learn.
Yeah, well, it takes everybody a while to learn.
My mom would look at a picture of dad and call him her father.
Yeah, I see. Well, that's normal tendency. If somebody else did that, you go, No, that's not. So we have to correct our normal tendencies and and realize you're not in a normal world right now. You're in the world of Alzheimer's. Right. There's nothing normal there. So you don't want to make them wrong. Who cares if she thinks that's ultimately what you have to? Do? You know, who cares? She thinks that her parents are still alive. Right? You know, you have to make up an excuse of why they're not visiting. But you can come up with something.
See, this is why people need your book, because you have so many of these examples. Okay, learning to lie. I had support group leaders say to me one time, you know, you were probably taught not to lie. Yeah. On your. Yeah. I was taught not to lie. Yeah.
Well, forget about that. In this world. Yeah. Lying is your friend.
Okay, so there's a sweet, sweet story you had about ice skating?
Yeah, um, I was sitting with my father. And I was telling him about this when I was still living in New York. And I was going to Wollman Rink every morning, early morning, to ice skate in the winter. And I was telling him about that. And he said something about when we used to ice skate together. Well, I mean, he did ice skate when he was younger. He was great skater. But we never did ice skate together. And I started to say that and I caught myself. And I just spun out this whole story of how we went ice skating on a lakes of frozen lake and the trees and the owls and the trees. And I had this. I just spun out this whole story.
Isn't that great?
Yeah. I mean, I don't know where you find a frozen lake in California, but he didn't pick up on that. So it was, you know, I just like I said, I just, I just found out this whole story that he got completely caught up in.
And he loved it.
You made him really happy. Hallucinations, your support group people kept bringing that up. But Did your dad have any?
Alzheimer's does not typically come with hallucinations. Other forms of dementia do. And it's, you don't you don't want to argue with someone who is having hallucinations. You just, you just don't because that's what they're seeing. And Lewy body dementia in particular comes with hallucinations. And I told a story of a friend of mine who has a friend who was diagnosed with Lewy body dementia, and she believed that there were men on the roof. And he and he couldn't talk her out of it. And he called me and said, she just keeps thinking there are men on the roof and I keep telling her there aren't and she keeps getting angry and telling me there are and I said well stop doing that. Stop telling her there aren't. Tell her. There were and I saw them, and I chased them away. But if they come back, you let me know and I'll chase them away again. You don't want to invalidate a hallucination is a very real thing. Anyone who ever took psychedelics knows that, you are seeing what you think you're seeing, you know. And for someone to say it's not real is you don't want to do that.
They can be very descriptive too down to the color of somebody's buttons.
Yes. So just validate them and try to steer them away from it.
Caregiver Anger, let's face it, we're human, we're all human. And oh, there were times I found myself so angry. And you brought up a solution to that, that I thought was so interesting limiting time to blow off steam. Tell us
Yeah, I read somewhere that that physiologically, our anger response plays itself out. And I can't remember now it was like 20 minutes or something like that. Like, if we get really angry about something like we're, you know, driving and someone almost hits us or something like that. And we get angry like that. And our physiological anger response plays out in something like, I don't know, 18-20 minutes, something like that. So anything beyond that is a choice. We are choosing to stay with that anger. so I found that, I think a really good tool is to say, Okay, I'm going to allow myself to be angry for 30 minutes or an hour, give yourself whatever time you want, I'm going not 20 hours, but you know, of yourself, like reasonable amount of time, I'm going to allow myself to be angry for this amount of time and go do something to let it out, go for a run, go for a hike, go find a go find a punching bag at a gym and punch or something or do something, you know. And but then when that whether it's 30 minutes or an hour or whatever, when the clock hits that you're done. You know, it works. I mean, you have to stick to that you don't you don't get to do snooze alarm thing, you don't get to xxx more. You have to be really strict with yourself. If it's 30 minutes or 30 minutes.
It's kind of a good thing to keep in mind just for general living even if you're not being a caregiver, you know?
yeah, I get very pissed off driving when people do stupid things, which is pretty much every day. And and I can come back to it like five hours later and get and feel that anger come up in me again, and I have to go, okay, there is no point in this stop it, you know, that person is going to go get in an accident somewhere. And right, because they're driving like an idiot. So you don't need to still be angry about it.
Maybe they're having a maybe somebody in their family just died. You don't know. They could be having a bad day.
Or maybe they just drive like that all the time.
Maybe they're just an idiot. Okay, we're, we're, we're laughing right now. And my next topic for you is to tell us about finding humor. I loved the dog barking story. Tell us about that.
Yeah, when my father could still go on walks. The Secret Service agents would take him down to this park near my parents house and walk around there. And I would go sometimes with them. And one day, we were walking past a house and the dog was on the other side of the fence was barking and my father started barking back at the dog. And, you know, my initial response was embarrassed when I was kind of looking around and going, Oh, my God, people are gonna see, like, barking at a dog. And then, but then right on the heels of that feeling. I thought, well, the whole world knows he has Alzheimer's. So what if he's barking at a dog? I mean, it's kind of funny, you know? You know, they'll get some insight into what can happen if someone has Alzheimer's.
Yeah, that's a good Caregiver Tip too, because you've, you've got to just think about some of these things that happen. And maybe there is humor in it. You know, when when my mom's phone rang? She answered the remote control. Yeah. And I we just laughed.
Yeah, and when you laugh, they laugh. I mean, laughter is contagious. So you know, that's the truth of the matter is that people with with Alzheimer's do funny things they do. And you're not laughing at them. harshly You're not laughing at them into ridicule. You're laughing at them because it's funny. And but again, I think, you know, you have to be really careful who you share that experience with because someone who has no experience with them might think that you are laughing at them, derisively.
At them. And and there are important sweet moments to remember to like the comment about the storm passing that your dad made. Do you remember what you said?
Yeah. And so we were sitting outside of their house which was on a hill and you could look at the city and and so sunlight was coming through the clouds and was sort of glinting off of the buildings. And I mean, it was quite a lovely, you know, view from their house. And he said, he said he does good work. And I just took a guess. And I said, God, and he said, Yes.
Sweet. Yeah. Glad you remembered that moment. And I love that you said the soul doesn't have Alzheimer's, just the brain.
Right? Well, I think, you know, believing that enabled me to, to pick up on moments like that and to pick up on moments of, you know, there are moments of lucidity even deep into the disease when you feel like the person is there, they've shown up, but they're very fleeting. And they're very quick. Yes. And then if you don't believe that there is a soul in there that is intact, you're going to miss those moments, because you don't believe they could be there.
Yes. So true. Steve, we’re, we're going to be closing pretty soon. So Steve, do you have any thing you want to ask or say?
Well, you ran a caregivers group, and so have I. And it's a challenge. And it's also reward. I just curious about, you know, what you would say to people who are considering caregiver groups and what you found the value of them being
my support group, I ran it for six years, twice a week, my particular goal was to dig a little bit deeper, as I did in this book, and not just stick to what do I do if this happens? I wanted to dig down to Who who are you in this situation, you know, if you are particularly with a parent, if you're still resentful, 17 year old, you're not going to do very well in this in this environment. I wanted to like I say, you know, peel away some layers a bit, and get down to more of the emotional core of the caregiver who is now faced with this situation.
How did the people in your group feel about that process?
Well, pretty good. Because, you know, a lot of people kept coming, I would say there are one or two people who was too much for them. And they came like once and went, This is too much for me and didn't come back, which is fine. That was too much for them.
The people got something out of it. What did they say about the value of of digging that deep?
Well, ultimately, that it changed how they dealt with their loved one. Right? I mean, if you because that that was really pivotal for me, I realized I had to grow up. But I was still going to be that daughter who always wanted more from her father and was never going to get more from her father, then I was going to be taking on a very adult journey as not an adult. And this is grown up stuff dealing with Alzheimer's dealing with dementia is grown up stuff. So you really can't haul in all of your childhood wounds, and all of the ways that your parents slighted you and all the resentments you've been carrying around. They're part of your life. But you're gonna have to put those aside, compartmentalize them, and grow up.
Great advice. Really great advice.
Really, really great advice. I think this is probably a good place to wrap up. I I do want to say that I was very touched when you said that your father saved your life. You've done a beautiful job. Just a beautiful job helping caregivers.
Yeah, thank you.
You wrote a book that as I said before, I wish I had while I was caring for my mom. And we will of course include in our show notes. The link to “Floating in the deep end” is the name of the book. Yes, of course. It's available on Amazon and and we'll make it easy for people to find it. And thank you so much for joining us today.
Yeah, thank you. I enjoyed it.
Yeah, thank you, Patti.
Yeah, we really appreciated it. And to our listeners. Please join us again. For more helpful caregiving tips and advice on spotlight on care.
Spotlight on care is produced by the University of California Irvine Institute on memory impairments and neurological disorders, UCI MIND. Interviews focus on personal caregiving journeys, and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention or treatment should seek expert diagnosis and care. Please subscribe to the spotlight on care podcast wherever you listen. For more information, visit mind.uci.edu