In our LiveTalk series, Being Patient spoke with Patti Davis, daughter of former U.S. President Ronald Reagan, about the memories she shared with her father and how his Alzheimer’s diagnosis gave her the chance to make a needed change in her own life.
Alzheimer’s can often be a long, drawn-out illness, and for Patti Davis, this long goodbye was also a blessing. Looking back on her late father Ronald Reagan’s decade-long journey with Alzheimer’s, Davis thinks of the small but precious moments they shared. Amid the sorrow and grief of witnessing her dad’s decline, she is grateful for these moments.
In her book, Floating in the Deep End: How Caregivers Can See Beyond Alzheimer’s, she writes: “I had to remind myself again and again that there are many colors on the palette of Alzheimer’s — some dark, some bright. I owed it to myself, and I owed it to my father, to embrace all of them. Gratitude was one of the brightest colors, and it has followed me through the years, anchoring my memories and reminding me that as complicated as life can be, it can also be as simple as a shiny afternoon after the rain has passed and it feels like God is smiling.”
Being Patient spoke with Davis about how she grew as a person as she accompanied her father on the journey that followed his diagnosis, about the challenges that her family faced, and about her faith that her father’s soul would remain unscathed by the illness he grappled with.
Being Patient: Your late mother, Nancy Reagan, told you about your father’s Alzheimer’s diagnosis shortly before he revealed it to the public in 1994. How did you feel when you found out about his diagnosis?
Patti Davis: I was in an extremely dark period of my life at that point. Everything seemed to have fallen apart and gone wrong. I was so low that I was thinking I didn’t want to be here anymore. Then I found out that my father had Alzheimer’s. That could have been the last straw — what pushed me over the edge. Instead, it actually pulled me back from the edge, because it was bigger than me. It was bigger than my despair. It was bigger than everything that I was going through and I wanted to show up for him. I never told anybody about this before, and when I sat down to write this book, I thought long and hard about whether or not I wanted to put it in the book.
“It was bigger than my despair. It was
bigger than everything that I was going
through and I wanted to show up for him.”
The reason that I did was that I thought someone might be reading this who is in a really dark time, and I wanted to impart to them the idea that there is something bigger than the pain you’re going through, that there is someone out there who needs you. It doesn’t mean that all your problems and pain are going to go away, but it does mean that there’s a little bit of a balance.
Being Patient: In a way, your dad’s diagnosis gave you the chance to do something right.
Patti Davis: Yeah … I remember walking around Manhattan after I found out and thinking, ‘I’ve gotten so many things wrong in my life, I have to get this right.’ Looking back on it, I can see that that really forged one of the main ideas for Beyond Alzheimer’s (a support group established by Davis) and for [the] 10 years of his illness, which is the willingness to see things differently.
I could have seen this as the nail in the coffin. Instead, I saw it differently. I saw it as my way out of pain. I think that’s a really important grounding principle probably for life, but particularly dealing with someone with dementia. If you only look at what is in front of you, the person is losing cognition. They’re losing memory. They’re becoming less familiar to you. But if you look at it differently, there’s still a human being there. There’s still a soul there. There’s still someone with needs and desires and emotions.
Being Patient: You wrote that you anchored yourself in the faith that your dad’s soul wouldn’t be affected by Alzheimer’s. Can you tell us more about what that means?
Patti Davis: One was how can I see this differently. The second was I didn’t believe his soul could have Alzheimer’s. If that doesn’t fit with your belief system, or lack of beliefs, that’s fine. Your beliefs are none of my business. Just consider the possibility, because it’s going to change how you deal with that person.
You’re going to be more alert to those openings in the disease when you can see the essence of that person. Those moments do come and they’re fleeting. If you don’t believe that that person is even there anymore, you’re going to miss them.
Being Patient: It must have been difficult for you to anchor on that faith throughout your father’s decade-long journey with Alzheimer’s.
Patti Davis: None of this is easy. None of us know how to do this when [Alzheimer’s] enters our lives. There was a period where I almost felt like I was losing my faith. But ultimately, [my faith] is what grounded me. He opened his eyes the moment before he died and he was present. He showed up before he died. I thought everything I had believed and thought was validated.
“If you look at it differently, there’s still a human
being there. There’s still a soul there. There’s still
someone with needs and desires and emotions.”
Being Patient: After your father had a fall and received a hip surgery in 2001, you described that he wasn’t the same as before. The main challenge for you then was anchoring yourself in your faith. Can you share with us how you grounded yourself back to this faith?
Patti Davis: That was the time that I lost grip a little bit on my faith. It was seven years into his Alzheimer’s so we’ve been all dealing with it for a long time.
I think my faith was restored in moments sitting with him. I really believe that there was a communication that went on sometimes in total silence. I returned to the man who taught me as a child to talk to God.
I tell the story in the book about being a little girl and going up to our kite flying hill behind our house, asking my father, ‘If I stand on my tiptoes and reach my arm up really high, how high up do I have to reach to touch God?’
He got down on my level and said, ‘You don’t have to reach up. God is everywhere and he’s inside of you and you just talk to him. You just have a conversation with God.’
We talked about that a lot when I was a little girl, so that really was my foundation. In that time when I felt like I was losing my grip, that was the foundation that restored my faith.
Being Patient: One of the topics that you could engage with your dad was water. Can you tell us about his love for water?
Patti Davis: He was a lifeguard when he was younger and boasted about saving [more than 70] lives. He taught us to swim practically before we could walk. Water was a big element of our lives. Then when I was older, we would go to the beach [and] he taught me how to body surf. I would follow him out into the surf that scared me. But I wanted to be with him, and I wanted to impress him and do what he did.
A lot of the life lessons that he taught were in the ocean and were about the ocean. That if a wave is coming at you and it hasn’t quite crested yet, you can go up through the top of it and come down on the other side. But if it’s already starting to crest [and] if you dive down deep to where the waters are still, it will go over you and you’ll be okay and then you could come up on the other side.
Being Patient: One of the messages that you hope readers can take away from the book is to embrace grief. Tell us more about how important this is.
Patti Davis: A woman had told me [a story] long before my father got diagnosed with Alzheimer’s. Her husband had cancer and died, and she had been the main caregiver. Even though she could well afford to have help in the house, she didn’t really have help in the house. She took on pretty much the entire task herself.
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After her husband died, she got agoraphobia. She couldn’t leave the house. She was wise enough to know what it was and she said, ‘I hadn’t allowed myself to grieve. I was restricted to my home. I couldn’t walk out the front door without a panic attack. I had to stay there and deal with the grief that I had been shoving away.’
It was such a poignant story for me and I thought about it early on when my father was diagnosed, and I thought, ‘That’s not going to be me. I’m going to deal with this grief as it unfolds and I’m going to go willingly on this journey.’
Being Patient: How do you think your mother dealt with her grief throughout your father’s illness?
Patti Davis: My mother did not share a lot. The one moment that I write about in the book was not too long before my father died and I was leaving the house late in the afternoon. She fell against me and cried on my shoulder and said, ‘Nothing is ever going to be the same without him.’ That was the most overt and real expression of grief that I had ever seen from her.
I’m sure she wept when she was by herself, but we didn’t have that close, cohesive family where people could grieve together. It just wasn’t the reality.
Being Patient: Based on your observations at Beyond Alzheimer’s, how big of a toll does dementia take on family relationships?
Patti Davis: It does take a toll, but I think if you step back and look at your family through clear eyes, not a lot changes. If you’ve been a close cohesive family, you’re going to continue to be that, probably more so. If you’re a fractured family, you’re going to be that and probably even more so. When difficult things happen, people cling to what’s familiar.
The idea that this really challenging thing happened and the family banded together as they never have before [is] great for lifetime movies, but in real life — I’m not saying it could never happen, maybe it has — for the most part it doesn’t happen. Your family’s going to be what it’s always been.
Being Patient: Do you think that was the case for your family?
Patti Davis: Yeah. There was no foundation of closeness. We had always been this fractured family — everyone on their own path. We tried. Maureen (Davis’ late half-sibling) and I tried to learn how to be sisters.
But it was like building a house on sand. There was no foundation there and it was very sad. My mother really was the architect of that split family and now she was losing the love of her life. She didn’t have that fold of the family around her to comfort her, not that we didn’t want to and try. But like I said, there was no foundation and nobody knew how to do it.
Being Patient: You wrote that the long goodbye in Alzheimer’s can actually be looked at as a gift compared to other tragedies in life. What do you mean by that?
Patti Davis: That came to me after the Pulse nightclub shooting. The next support group that I had right after that had happened, I said, ‘I’ve been thinking that we gather in this room to talk about and deal with this long goodbye of dementia. We talk about the sorrow, sadness and difficulty of it, but you look at something like this mass shooting, I bet every one of those people would have loved to have a long goodbye.
“‘How can I grow and how can I
show up and be the strongest, the
best I can be in this situation?'”
They didn’t even get to say goodbye at all. Their lives ended looking into the heart of darkness, into evil. I think it’s important, even though you recognize the sorrow of this long drawn out illness and the difficulty of it, to also say it’s also a gift. We get to have time with them. We get to have this unfolding of different experiences. Someone with dementia pretty much dies between clean sheets, and if they’re lucky, with loved ones around, not so with people in that nightclub or any of the other mass shootings.’
Being Patient: As you’ve mentioned earlier, there was a special moment just before your father passed away.
Patti Davis: It was quite remarkable. His eyes had been closed for the better part of a week. His eyes really hadn’t been blue for like a year. They’d faded to this grayish blue color. The moment before he died, he opened his eyes. They were blue. They were twinkly. He was there and he looked at my mother and then he was gone.
Being Patient: How did your father’s experience with Alzheimer’s change you as a person?
Patti Davis: I grew up. The younger girl wanted more from her father, acting out sometimes to get his attention. When Alzheimer’s entered the picture, I thought, ‘It’s time to grow up, because that young girl reaching for things that [she’s] never going to get from him is not going to do very well in this situation. What can I learn here? How can I grow and how can I show up and be the strongest, the best I can be in this situation?’
Being Patient: Any words of advice for family members with loved ones living with dementia?
Patti Davis: You’re never going to be the same person at the end of this journey as you were at the beginning. But how you are different is a matter of choice. You’re either going to be harder or softer, more brittle, more closed off or more open, more compassionate, and that gets down to the choices that you make consistently through the whole duration of the illness.
The interview has been edited for length and clarity.
Contact Nicholas Chan at firstname.lastname@example.org