Alzheimer’s Gifts: Wisdom from President Ronald Reagan’s Daughter
When U.S. President Ronald Reagan died June 5, 2004, after living a decade with Alzheimer’s disease, daughter Patti Davis thought for a brief time that she was “finished” with Alzheimer’s. She quickly realized, “How could I possibly be?”
Soon after, she wrote The Long Goodbye; then she founded her caregiver support group, “Beyond Alzheimer’s,” which she ran from 2011-2017 and is currently licensed at Geisinger Medical Center in Pennsylvania and Cleveland Clinic in Las Vegas. This year, she published a new book, Floating in the Deep End: How Caregivers Can See Beyond Alzheimer’s. The Alzheimer’s Foundation of America spent some time with Davis contemplating what she’s learned and wants others to know, nearly 20 years later.
WHAT WAS YOUR REACTION TO LEARNING OF YOUR FATHER’S ALZHEIMER’S DIAGNOSIS?
It was a very, very dark time in my life. Everything had gone wrong. I really didn’t know if I still wanted to be here. I was tired down to my soul; and I thought, “No one is going to miss me.” I didn’t see any reason to go on. Then I found out
that my father had been diagnosed with Alzheimer’s. It could have been the last straw. But, instead, it was the opposite.
It took me out of my despair enough to say, you know what, this is bigger than me. This is bigger than the pain that I’m going through. And I want to be here for this. I want to show up for this. I want to be as positive a force in this journey as I can.
When I was writing this book, I thought very hard about whether I wanted to include this fact. Then I thought there might be somebody reading who is in a really dark time in their life. I wanted to impart the idea that there is something bigger than your own pain. There is some situation out there that needs you. It gives you a bigger lens through which to look at life.
YOU TALK ABOUT THE GIFTS OF ALZHEIMER’S THROUGHOUT THE BOOK. CAN YOU EXPLAIN WHAT YOU MEAN BY THAT?
With Alzheimer’s, or really with any version of dementia, there is a stripping away of everything. It’s a stripping away
of everything for the person who has the disease; and it’s also a stripping away for the caregivers, the loved ones, the family members.
I’ve often said that Alzheimer’s brings up everything. It brings up everything in families. It brings up everything in
you. So it gives you an opportunity to work on the things that you need to work on…because there they are. They are just raw and uncovered.
I remember someone in my support group having an issue with control. I said, “You are trying to control something that you can’t control,” and they said, “It’s just the way I am.” I said, “Well, there’s the way that we are; and there’s the way that we are meant to be. Can we look at the way we were meant to be?”
I don’t think God put anyone on this earth and went, “You, I think you’re going to be the control freak.” We are supposed to work our way out of that stuff.
YOU MENTION THAT THE SOUL OF THE PERSON IS THERE.
Yes, that was my other grounding for the ten years of my journey through this. I didn’t believe my father’s soul could
have Alzheimer’s, so that kept me looking past the disease to find glimmers of his soul in there.
I’m very aware when I say that to people that there are those who go, “I’m an agnostic or I’m an atheist, that doesn’t jibe with my beliefs.”
Fine….Just consider that it might be possible. Just consider it. Because it will change how you deal with that person.
ANY ADVICE TO DEAL WITH THE ONGOING GRIEF?
You have to go with it, because it will catch up with you if you don’t.
I’ve always said, Alzheimer’s is a death before dying. The grieving process needs to start at the beginning. If you allow yourself to go with it, you will learn a lot from moving through that grief, especially if it’s someone with whom you have sweet relationship or sweet memories. There is a sweetness to that grief.
It’s more difficult if it’s a person you didn’t get along with. That’s a very hard situation. If you had a parent who was
mean or abusive and then they get dementia—that’s a tough one. You have to look past what was done to you and
hopefully choose compassion in yourself.
SWEET MEMORIES IN THE GRIEF. YOU HAD SOME OF YOUR OWN THAT YOU NOTE IN THE BOOK?
My father was a very magical father when we were little kids. He knew how to talk about leprechauns,
and he certainly knew how to teach us how to swim. That was a big one.
My memories of him when I was younger was riding horses with him, following him out into the ocean and learning to
body surf. He was very big on teaching his children to swim as soon as possible. He was a lifeguard when he was younger. He’d say to my mother, “My children are never going to drown!” [Davis chuckling.]
When he had Alzheimer’s, we would take him down to the beach in Venice sometimes and walk on the boardwalk, so he could be close to the ocean. Water was very important to him.
WHAT ADVICE DO YOU HAVE FOR CAREGIVER STRESS?
You have to take time for yourself. You have to. Particularly if it’s a family member, because you have the emotional
I think a lot of what comes into play when people don’t take time for themselves is an avoidance of grief.
We don’t want to give ourselves over to grief. It hurts. And we’ll do anything to avoid it. Dementia gives you ample
opportunity to avoid grief. You can just stay really busy with the person you are caring for and say, “I don’t have time to sit there silently with myself or to meditate or anything like that….I don’t have time.” Really what’s driving that is,
“I don’t want to take the time.”
DO YOU THINK THE PUBLIC’S PERCEPTION OF ALZHEIMER’S HAS CHANGED SINCE YOUR FATHER’S DIAGNOSIS?
Well, I do in the sense that we are more open about it, and willing to talk about it. People like Glen Campbell and Tony
Bennett helped out with that. I think we are much better about talking about the disease.
I don’t think we are much better at caring for the caregivers and recognizing what they go through though.
I don’t think in the 10 years that my father was ill I can remember anyone asking me how I was doing.
And I know when I was running my support group, almost every time when someone new came in and either I or my co-facilitators said, “How are you doing?” They would be startled. Like “Oh, no one has ever asked me that before.”
WHAT THINGS DID YOU LEARN THAT YOU WOULD LIKE OTHER CAREGIVERS TO KNOW?
There is always another way of looking at things. That applies to any aspect of life, and it certainly can to this disease.
You can look at what is in front of you, which is the loss of cognition, the loss of memory, someone becoming unfamiliar to you. You can stop right there, if you want. Or you can look deeper and remember that there is still a human being. There is still someone with emotions, desires, and needs.
I’m not advocating denial. I’m not advocating turning away from what’s in front of you. I’m saying that our physical senses don’t tell the whole story. We know that. People used to look at boats out in the ocean and think the earth was flat, because the boats just disappeared. Our eyes, our ears, what we are witnessing is not always the whole story.