Patti Davis, daughter of President Ronald Reagan, spoke to WAM about her new book, Floating in the Deep End: How Caregivers Can See Beyond Alzheimer’s. Davis explains the love, loss and lessons she learned while seeing her father battle Alzheimer’s disease.
Read the Q&A with Patti Davis below.
WAM: Your father, President Ronald Reagan, was diagnosed with Alzheimer’s in 1994, a time when there was almost no public discussion about the disease. A full quarter of a century later, have we made progress?
Patti Davis: In 1994 when my father was diagnosed with Alzheimer’s, almost no one was talking about the disease, despite the fact that statistics revealed many people were dealing with it. There was embarrassment, confusion, and very little information coming from the medical community. All these years later, I think we have become much better at taking Alzheimer’s out of the shadows and looking at it in the light. We have become more comfortable with our discomfort.
I hope that my father’s letter to the country and the world, announcing that he had the disease, helped to break down some barriers. People like Glen Campbell and Sandra Day O’Conner have also broken through the silence with their courage and their openness. Films like Still Alice have allowed people to slip inside the world of Alzheimer’s, see it as a baffling journey with few guideposts and little that is predictable.
More than any other disease, we need to learn about it through the personal experiences of others. That’s why support groups are so important. It’s invaluable to sit with others who are pilgrims on the same path and realize that you aren’t alone in what you’re feeling. It gives you the sustenance you need to look ahead as days and nights stretch out before you, with the disease dictating what happens next and when.
WAM: You share some touching memories of experiencing the Alzheimer’s journey right alongside your father. Does the title of the book, “Floating in the Deep End,” describe your father’s journey into dementia–or yours traversing that of caregiver?
Patti Davis: The title of my book, Floating in the Deep End, came to me because that’s how I felt in the decade of my father’s illness–like I had been carried out to deep water, where I could possibly drown. But I needed to float there–on faith, on the belief that his soul couldn’t have Alzheimer’s, and on the history between us that had often been troubled but was precious to me.
When I think about it, though, that title could actually apply to what someone with Alzheimer’s is going through. They are, metaphorically speaking, carried out to sea. They end up far from land, far from everything that was once familiar to them. Their eyes are etched with fear of being swept away, and the only relief when the disease worsens is that the fear seems to vanish. Most of the time, they seem content where they have drifted off to. It’s the caregivers who are left with longing and grief, staring at the distance between themselves and someone they once knew.
I frequently go to images of water to describe things, maybe because I learned to swim almost before I could walk. I have spoken to many people about grief as a river that needs to be crossed, with currents that sometimes pull you under, but eventually will carry you to the other side.
WAM: One of the dynamics you describe in your book was that between you and your siblings. What did you learn from your experiences with them that might help other children of Alzheimer’s?
Patti Davis: One of the things I think people have to accept is that the entrance of Alzheimer’s into your life is not going to magically alter your family relationships. I’m not saying it never happens, that there haven’t been instances of great healing and coming together. I’m sure there have been. But, honestly, that isn’t the norm. What usually happens is that the dynamics that have been in place for years become more obvious, and more permanent. If your sibling has always felt superior to you, has always made you feel like you don’t measure up, hang on because once Alzheimer’s claims one of your parents that will probably get worse. People tend to cling to what’s familiar when challenging times come. In families, the roles were set a long time ago. Alzheimer’s isn’t going to change that; if anything, it will exaggerate it.
My family was never close. We were always fractured–each of us on our own path with little support or connection to one another. There were times in the ten years of our father’s Alzheimer’s, when we made an effort to come together, to change that dynamic, but it was like trying to build a house on sand. What I came to realize was, it was better to simply accept that this was the family we were born into, our history couldn’t be re-written, and if there was to be any healing, it would come through compassion and understanding, even if those feeling were tinged with sadness. I have had people tell me in angry detail how horrible a sibling was being to them when they were trying to discuss their parent’s care–the parent who had dementia. I’ve then asked what the relationship was prior to their parent’s diagnosis, and pretty much every time, that person has said, “The same.” So, where’s the surprise? I would ask them. People rarely change. It’s easier to accept that and change instead of how you regard them–find compassion in your heart, even if you have to dig deep for it.
WAM: You say we must give caregiving “the reverence it deserves.” Describe what that means how we accomplish that?
Patti Davis: I don’t think caregiving gets the respect or reverence it deserves from the medical community. I ran my support group Beyond Alzheimer’s for 5 years at UCLA and then 1 year at Saint John’s Medical Center. When I stopped running it after 6 years, I set out to get it licensed in hospitals. Two hospitals licensed it–Cleveland Clinic in Las Vegas and Geisinger Medical Center in Pennsylvania. Many other hospitals said no, citing that it just wasn’t in their budget, even though the cost of running the group, with facilitators, is like pocket change to a hospital.
It is well known that caregiver stress, particularly in the realm of dementia, lands caregivers in the hospital way more than the people they are caring for. Doctors and hospitals know this. If there is a way to relieve some of that stress, a way to hopefully prevent caregivers from becoming patients themselves, why wouldn’t you do that? In Floating in the Deep End, I quoted a doctor who said to me, “Alzheimer’s is the least profitable area of medicine.” I’m not suggesting everyone in medicine has that attitude, but it’s out there, and it’s something that needs to change.
I also think caregivers need to have more reverence for what they do, for the extraordinary burden they take on. I’ve had people say that they don’t really see themselves as a caregiver because they have the means to hire outside caregivers to help with feeding, dressing, bathing. But those outside caregivers – who are definitely doing God’s work – can’t provide the emotional care that a loved one can. They don’t have the history or the connection that a family member has. So, if you are showing up in any capacity for your loved one, you are absolutely a caregiver, and you need to revere and respect the choice you have made.
WAM: You admit that while extremely painful, Alzheimer’s also allows for some gifts if you can acknowledge them. For which of those gifts are you most grateful?
Patti Davis: We can become deeper, more compassionate people through grief. I’m not the same person I was before my father’s diagnosis. I certainly haven’t evolved in every way possible–I still get angry when another driver makes a stupid move and I’ve been known to raise my middle finger in such circumstances. But I changed in fundamental ways that have enabled me to choose peace of mind in situations that would have previously set me on fire (even if I fall short of that in traffic.)
I learned to look at things from a different angle–to see that there is always another way of seeing something. It might seem like the person with Alzheimer’s, or any other kind of dementia, is no longer present, that they are completely out of reach. But if you consider the possibility that cognition isn’t everything, that there might be an untouched, perfectly intact soul in there, buried beneath layers of the disease, it will inform how you feel and how you behave. Thinking like that can translate into the rest of your life, allowing you to back up and look at certain situations from a different angle.
I learned to accept that I didn’t know what was going to happen tomorrow or the next day, or the next month. I could prepare as best I could, but I had no control.
And I learned about grief–that it comes from love. That there are more colors on the palette of grief than just dark sadness. There is laughter, there is the sweetness of memories, and there is the endurance of another person’s life entwined with yours. That doesn’t go away with disease, and it doesn’t go away with death. We grieve because we loved, which I think is what we were put on this earth to do. Henry Ellis said, “All of life is a fine mingling of letting go and holding on.” That could describe perfectly that journey of losing a loved one to Alzheimer’s.
You can purchase Patti Davis’ new book, Floating In The Deep End HERE.