American actress Patty Davis spent ten years caring for her father, former U.S. President Ronald Reagan. We dive into the specific challenges of dementia, the universal struggles of being a caregiver, and the surprising gifts that can come from this experience.
Find all of Patti Davis’ books here: https://booksbypattidavis.com
Sarah Cavanaugh: Hi, I'm Sarah Cavanaugh, and this is Peaceful Exit. Every episode we explore death, dying, and grief through stories by authors familiar with the topic. Writers are our translators. They take what is inexpressible impossible to explain, and they translate it into words on a page. Today I'm talking with American actress and author Patty Davis. She's the daughter of US, president Ronald Reagan and Nancy Reagan. Patty has written many books including The Long Goodbye and Her Latest floating In the Deep End, how Caregivers Can See Beyond Alzheimer's. It's part guidebook for the often overlooked caregiver and part memoir as Patty Shares what it's like being the daughter of a father who is slowly slipping away. This is such a beautiful book, and I'm so grateful to be speaking with Patty today as we dive into the universal struggles of being a caregiver and the surprising gifts that can come from this experience. It's so great to meet you. Patty Davis: Thank you. Sarah Cavanaugh: I'm curious, what motivated you to write this book? Patty Davis: I think this book sort of came about, I think really out of a little bit of anger and frustration. 2011 years after my father passed away from Alzheimer's, people were coming up to me and telling me very intimate stories about their own situation with their loved one who had dementia. Sometimes even in the grocery store, if someone recognized me and I knew they were telling me things that they probably weren't even telling friends of theirs, and it started to become clear to me that there wasn't enough care for the caregivers. So I woke up at three o'clock one morning and thought, I'm going to start a support group. I was sort of off and running then, and after six years I thought, I'm going to take this to a different phase. I'll write a book and put all this out there. And it is also obviously part memoir because if I'm giving advice to people, they need to know that where I got that advice, and then I kind of know what I'm talking about. Right? Sarah Cavanaugh: Yes, you absolutely do, and what I love about the book is it creates community around this. It can be so isolating to care for someone who's terminally ill. Patty Davis: I mean, people would even say that in the group. They'd go, "God, I thought I was the only person who felt like this. I thought I was the only person going through this." And then they find out the commonality of this experience. It's very comforting. Sarah Cavanaugh: Extremely comforting. It is part memoir. You say sometimes our homes are built with shadows and how you articulate the transformation in this process of walking with your father through this illness, it feels like you really mind it for the lessons you learned. Patty Davis: Yeah. When my father was first diagnosed, I was in a very dark time in my life. I had moved from California across the country to the East Coast where I knew nobody I'd fled an abusive relationship. I sold my house at the bottom of the market, lost pretty much everything, and I didn't know that I wanted to go on. I was tired down to my soul, and I really didn't want to go on. And in the midst of that is when this diagnosis happened, and right on the heels of that, it was like, oh, my mother called me and said, "well, in an hour there's going to be a letter released to the world." Sarah Cavanaugh: That's a lot of lead notice there. Patty Davis: And this was 1994, we didn't have cell phones. I happened to be home. What if I haven't been home? I thought of that. Sarah Cavanaugh: You would've found out with everyone else. Patty Davis: I would've been walking around Manhattan and someone would've gone, Hey, do you know that your father just released a letter? Sarah Cavanaugh: Yeah. Patty Davis: So it could have been the last straw. It could have pushed me over the edge. Instead, it ended up being sort of a lifeline to me because I thought, well, if he is handling this with the grace that he's handling it with, then I can step up and do the same. And also, I want to show up for this. I thought, I have to get this right. I've gotten so many things wrong in my life, I'm going to get this right. It didn't sort of magically make all my problems go away, of course, but it gave me a rope to hang on to. And sort of in that context also, I was aware that if I was going to show up for this experience, I had to show up as a grownup. I had a very long post-adolescent. I had hung on to my resentments and been the girl who doubt he didn't pay a lot of attention to or enough attention to, which frankly, all of his children felt. Not that he deliberately withheld things, he just, that's who he was. So if I show up with that, dragging that along with me, I'm not really showing up. It's just a rerun of what's gone on before. So in other words, I have to grow up. I just have to grow up like now. And that ended up being a big theme in my support group and also in this book, when I started my support group, when I started Beyond Alzheimer's, I didn't want to just do a group of saying, okay, when this happens, this is what you should is how you get the car keys away from, this is what you do when they'll go out wandering around. This is what you do when they ask the same question 55 times. That's part of it. I mean, these tools are part of it, but more importantly, before asking what should I do when asked, who am I right now? What person is coming into this situation within me that's trying to handle it form will always follow content. So if you're still the resentful 17-year-old, you're not going to do very well. So I learned that by going through it. I learned that by going, checking in with myself, and to be honest, it was much easier to do that... Well it was never easy, but I could get a grasp on it better with my father than with my mother because my mother was the trigger for everything. So I could feel like a real grown on be handling things with my father, and then my mother would walk into the room and different movie. Right? Sarah Cavanaugh: Different movie. Patty Davis: Different movie. Yeah. Sarah Cavanaugh: I love how you frame it that it dementia sort of saved your life in a way. Patty Davis: Yeah, it did. Sarah Cavanaugh: It's so encouraging to me because I also had a father who was gone the majority of my childhood. He was traveling, building a life elsewhere, and I think what dementia did for me was just a continuation of that absence. And you didn't just accept that, oh, he's absent. He's gone. You showed up for him in a way, Patty Davis: Well, I don't believe his soul can have Alzheimer's. I don't believe his soul can be sick. And that's why I titled my support group Beyond Alzheimers. I was always trying to look beyond the disease, not out of denial, not out of saying, oh, it's not so bad or what, but recognizing the severity and the sadness of the disease, recognizing that the disease is in control here, I have no control over it, but also that there is beyond fat disease, beyond the lack of the absence of cognition, there's a soul in there that knows everything.
Sarah Cavanaugh: I've heard it saying that people who get dementia, some get angry and frustrated, some get gentle and quiet. It's almost as if what is essential to you comes forward, and it feels like, your father was such a good man, and that sort of goodness and quietness, and my father as well, a man of integrity, and he's quiet and he's happy, and he cracks jokes. Patty Davis: So this is how I see dementia. I see it as a stripping away to the essential self of that person, the essential self that has evolved in their life. I mean, we don't walk around emotionally naked, and we all have personas and things that we sort of paper over in ourselves, not in a bad way, but some people more than others. But when dementia happens, literally all that is stripped away, and you are left with the essential core of that person who they are have chosen to be, who they have grown into. This can be a good thing or a bad thing. I've had people in my support group say, well, you know what? My father, once he got Alzheimer's, he turned into a racist. Dementia does not turn you into a racist. Dementia does not turn you into an angry, selfish person. It can reveal that you are a racist. It can reveal that you are an angry, selfish person or can reveal that you're a really sweet person. I think that's really illuminating and that's really kind of eye-opening to see, oh my God, that's who this person always was. And maybe you knew that and maybe you didn't, but it's interesting to see that. And my father, yes, was a very sweet, gentle person and remained so. It doesn't mean that there weren't, especially early on, that there weren't times of upset or even tantrums or something like that. I mean, that goes along with the disease particularly early on. That's not what I'm talking about. I'm talking about their presence. Sarah Cavanaugh: Did you ever think about him as someone else? There was the sort of before dementia and after dementia, or did you just see his soul all the way through? Patty Davis: I kind of saw his soul all the way through, and I think because he was a very sweet, gentle person, that was the continuous thread. Sarah Cavanaugh: Yeah, that makes sense. There's a lot of stress around caregiving. Patty Davis: Yeah. Sarah Cavanaugh: How did you take care of yourself as a caregiver as a daughter over 10 years, as you titled your other book? The Long Goodbye. It's a very long time. Patty Davis: Listen, it is a gift if people have the means to hire outside help, particularly to the degree that my father had it, that's something to be very, very grateful for that. But you're still a caregiver. You're still if you're emotionally if you're showing up and you're caring for that person and being present for them, you are still a caregiver. And I think for me, the real lesson and the real sort of passage was to recognize that this did not define me. I was not just a daughter who was losing her father to Alzheimer's, and I didn't get that at first. It was just like, okay, this is the box that's around me and this is who I am. And I was kind of walking around sad most of the time and didn't feel that I deserved to be happy and didn't feel that I deserved to have fun and all of that that many people go through. And I was still living in New York at the time, and I wondered why no one wanted to be around me. I wasn't very fun to be around. It took me a while to sit there and figure out that sadness is part of this, but my life is part of it too. I can have my life and I can have this other experience that I'm going through. They can both coincide and I don't have to sacrifice having fun with friends or something because I'm going through a sad thing. In fact, I'm going to be better going through this sad thing if I have that balance. Sarah Cavanaugh: Yeah. Do you feel like the depth of your grief expands your ability to feel joy too? Patty Davis: Yes. Yeah. I think grief is a wider river than people usually think it is. Sarah Cavanaugh: Yes. Patty Davis: In the 10 years that my father was ill, I don't remember anyone ever asking me how I was doing, and that was just the norm, I guess, to me. So it never really dawned on me. Oh, I think it dawned on me before I wrote the book. I think it dawned on me in my support group, because we would ask, I and my co-facilitator would say to people when they come, well, how are you doing? And people would look shocked because it was the same thing. No one was asking them how they were doing. People were asking them how their loved one was doing. People were always asking me how my father was doing, but no one ever asked me how... So we would obviously make a point of how well they would tell us why they were there and their father, their mother, their sibling, their spouse, whoever, and give us all the details. And then we would say, well, how are you doing? And almost across the board, people would be surprised that they were being asked that, it was so unfamiliar. And I think it's for anybody who knows someone who is a caregiver, ask them how they're doing. Sarah Cavanaugh: Yeah. There's a beautiful passage and the section called The world just changed. Grief arrives early, grief constantly asks us to acknowledge it. Most of us want to avoid it for the obvious reason that it hurts. And Alzheimer's offers ample opportunities for avoidance. You can keep yourself so busy with caregiving duties that you have no time to grieve or even think about grief. This is one of the reasons people plunge into hands-on caregiving intuitively. They know they won't have time to wrestle with the enormity of their loss. And somewhere in all that busyness is the idea that maybe if they just ignore grief long enough, it will go away and they'll never have to deal with it. This speaks so profoundly to peaceful exit because what we're talking about is befriending grief, not avoiding it, and how healthy it is the way you are speaking about befriending grief. Patty Davis: Yeah. I think there is, people have this assumption, and if I just keep pushing it away, sending it far away, it will disintegrate. And what I've always said to people is that grief is not biodegradable. It will wait for you and it will come find you. And if it has to come find you, it will bring you to your knees until you deal with it. You'll have an accident, you'll have an illness, you'll have something that makes you stand there, sit there, be still, and deal with it. So you are better off taking a deep breath and saying, okay, you know what? I'm going to go with it right now, and I will accept wherever it takes me. And it is scary sometimes, you know will get through it, you'll get to the other side and you'll be a different person when you get to the other side. Sarah Cavanaugh: I love that. I often wonder, my mother died 20 years ago of cancer. She'd never processed her grief. She lost a child. She lost many things. We never spoke about it. I'm just curious, were you ever able, as a child growing up, did your family ever talk about death or was that a taboo subject? Patty Davis: My father talked about death a lot. He talked about heaven a lot, about how beautiful it was. In fact, I remember actually, I said this in my eulogy from my father told this story that I had a little aquarium of fish, and one of the fish died and my father sat me out in the backyard up on this wall, and we dug a little grave for the fish, and he tied two sticks together and we put it in a little graveside for the fish, and he was talking about how my fish was now swimming in heaven with these beautiful, clear waters, and there weren't any predators there, and he could just swim forever, and it was so beautiful. He was talking about the sunlight coming through the water, and it sounded so beautiful. I felt sorry for the other fish trapped in the aquarium, and I said, well, let's go kill the others. So he was quite brilliant when as young children, talking about death, but yet when his mother died, we were told about it, but I didn't go to the service. I didn't even know how much of a service there was. It was like that sort of magic thing when we were children, and then later on, not so much. I didn't really know how to talk to him when I got older. Sarah Cavanaugh: What did you grieve while he was still alive and now following his passing are you still mining that grief? Patty Davis: I think in terms of my father, there will always be some grief that follows me because he wasn't an inaccessible father, particularly as we got older. I think that grief is that sort of emptiness or that kind of longing lives inside you, but grief over his passing, I think because I did accept it along the way, it was still very wrenching when he died, but I wrote in here about the moment of his death and that it was probably the most beautiful experience of my life. He hadn't opened his eyes for, I don't know, days and days and a moment before he died, he opened his eyes. They were blue again. They hadn't been blue for probably a year. They kind of faded to this grayish, and they were alert. I mean, he showed up. He showed up a moment before he died, and it was remarkable, and it was literally one of the most beautiful experiences I've ever had. Sarah Cavanaugh: I love what you said about how he looks at your mother, and she received his love in that moment. It was really, really beautiful. Patty Davis: Yeah. Sarah Cavanaugh: Do you think your mom was afraid of death? Is that why she wasn't present as much? She was making phone calls, that sort of thing when things were happening? Patty Davis: I don't think it was fear. I was there, my brother was there, we're a very fractured family, and I think she just didn't know how to walk into the fold of a family because there had never been the fold of a family. I think it was just habit. I think it was just habit. Sarah Cavanaugh: Did that experience with your father change at all, your feeling about your own death? Patty Davis: Well, I think it probably took maybe a little bit of fear out of me, but I think most of us are afraid of death. I mean, it's the unknown, and so I can't say that, oh, I have no fear of death anymore. That would not be true, but I think it certainly softened some of it. Definitely. Sarah Cavanaugh: I'm going to read this quote from your book, see what comes up for you. Patty Davis: Okay. Sarah Cavanaugh: One of the unique aspects of losing a loved one to dementia is that you think during the years of their illness that you are becoming accustomed to their absence, but when they die, you suddenly realize that they were in fact taking up a lot of space. Patty Davis: I mean, your life kind of in many ways, revolves around them to one degree or another. When I was running my support group, I never wanted tell people what to say or what to think, but I did make exceptions in that. And if someone came in and said, well, they're just not there. My mother, my father, my spouse, whoever, they're just not there, I would always go, okay, you know what? Hold on. Don't say that. They are there. Sarah Cavanaugh: Yeah. Patty Davis: They're physically there, they're emotionally there. They're not there in the same way that they were before, but they're there. You know? Can't just dismiss a human being or disregard a human being. That's what you realize. Also, when they die, even though I've called Alzheimer's a death before dying, and it is in many ways, that person is still there and they still take up a great deal of room in your life, and then suddenly they're not there. Sarah Cavanaugh: Especially if you've chosen to show up for them. Patty Davis: And I think that plays a lot into how you handle your grief, because I think the longer the disease goes on, the assumption is, well, I've been grieving all this time. I'm not going to have any more grief left when they die. And that's a natural thing to think. It just doesn't work like that because it's a different phase of grief. Sarah Cavanaugh: What's your hope for this book? Patty Davis: I want people to have this as their handbook and dog ear it and mark it up. I hope this is one of those books that people just keep there and then go, oh, I remember something in there, and go back and look it up. Sarah Cavanaugh: Well, I believe it's timeless. Patty Davis: Yeah. Sarah Cavanaugh: I learned so much from this conversation, having my own father slipping away, and I just wanted to really thank you, Patty, for writing this book For documenting your experience so that those of us who are going through it now can really learn from you. Patty Davis: Aw, thank you. Sarah Cavanaugh: Thank you for listening to Peaceful Exit. You can learn more about this podcast and my online course at my website, peacefulexit.net. If you enjoyed this episode, please let us know. You can rate and review this show on Spotify and Apple Podcasts. This episode was produced by large media. You can find them at larjmedia.com. Special thanks to Ricardo Russell for the original music throughout this podcast. More of his music can be found on Band Camp. As always, thanks for listening. I'm Sarah Cavanaugh, and this is Peaceful Exit.