In 1994, when my father was diagnosed with Alzheimer's, we became the most famous family dealing with this disease. At that time it was shockingly new to release such a thing publicly. There was a shroud of secrecy and shame over it. It is, after all, an embarrassing illness, rife with unknowns. You simply can’t predict what parts of a person will vanish, or what unexpected and awkward things they might say or do.
But my parents decided to tell the world, and my father wrote a heartbreakingly lovely letter to America. I had the salve of both friends and strangers offering my family prayers and sympathy. But because Alzheimer’s was still not openly discussed, I had no one to talk to about suddenly becoming a daughter who was losing her father to this mysterious and relentless conqueror. Obviously, there had to be other people out there in the same situation, but I didn’t know who they were.
My sister Maureen and I began talking more than we ever had before, but not long after our father’s diagnosis, she was stricken with the melanoma that would ultimately kill her, so her own battle for life marked our conversations.
My brothers, on the other hand, maintained their stoicism, believing they could chart their way through the emotions by understanding the mechanics of the disease - how amyloid plaque formed in the brain, brittle and cruel, making synapses break like dry twigs. It was my first indication of how differently men and women process bad news. Our father was going to leave us in stages, disappear piece by piece, memory by memory and my sister, my mother and I just tried to keep from drowning in the emotions that overtook us.
“What’s going to happen?” I asked my mother in those first early days.
“I don’t know,” she said.
She’d asked the same question of one of my father’s doctors. He had no answers for her either. Along the way, someone gave us a booklet, which I believe was called The Long Goodbye, a phrase my mother began using and which I later used as the title for my memoir about our sad, strange journey. The booklet they gave us was clinical, uninformative and I don’t think any of us even finished it.
I tried to look into the future, but all I could see was the past – the times I’d hurt my father with my rebelliousness, the times I turned him away and wouldn’t listen to him. My despair felt like a rising tide that would drown me if I didn’t figure out how to swim through it.
Yet another image from the past rose up – not one steeped in regrets, but alive with promise. My father – the old lifeguard who saved 77 people at Rock River when he was a teenager – had taught me to not fear the ocean. Respect it, he said, and learn from it. Learn about tides and waves and how to go over them if you need to, or under; how to ride them to shore and how to judge the pull of tides so you don’t get swept away. If there’s an undertow, don’t fight it – go with it until you can break free and swim to shore.
Alzheimer’s was a new ocean, and I had to find my way. I owed it to him. I’d done so many things wrong in my life and in my history with him that I had to get this right. I had to have faith in what he’d taught me. He believed our souls are eternally cradled in God’s hands. So - I thought - his soul doesn’t have Alzheimer’s. It can’t.
That became my compass.
Beyond his broken language, his memories that splintered and vanished, beyond the moments when his eyes bristled with the panic he had to be feeling – “I don’t know where I am,” he said once, standing in the living room of his own home – I held onto the faith that his soul floated clear and serene deep inside him. And, by holding onto that faith, I reasoned, I could hold onto him.
I felt like I was straddling two worlds – the world of my grief, the sorrow that felt like a twisted cord inside me – and the world I was now piecing together, my own map of how to reconnect with my father, how to be there for him even when he seemed lost in shadow. There was no one to tell me I was wrong or misguided. The Internet wasn’t as ubiquitous as it is now. In 1994, I didn’t even have web access, so searching for help online never popped into my head as an option. And doctors could offer no emotional help.
Things have changed on that front, but there is still a feeling of loneliness when the disease strikes. Strangers often approach me, confide intimate details about what they are going through with a parent who has Alzheimer’s. People post things on Facebook, trusting and hoping that the response they get will help them.
Early in my father’s disease, I caught myself trying not to laugh when he said something inadvertently funny. But my instinct told me that was silly – I wasn’t laughing at him, after all. And the sound of laughter made him brighten and smile. Occasionally, laughter would somehow inspire him to say something even funnier.
When the inevitable day came that he no longer recognized me as his daughter, I grabbed on tight to the faith that his soul remembered; it was just his brain that had forgotten. And then I looked at how sweet he was being with me – some woman who came by frequently to see him but whom he didn’t know was related to him. I told myself to cherish what that revealed about his character and his kindness. Looking at it that way kept me calm and focused while I was with him. But when I left my parents’ house, I pulled off to the side of the road and sat in my car sobbing like a baby.
My father “plateaued” for a long time – a few years, I think. He would spend a few hours a day in his office, mostly greeting visitors who had made appointments to see him. We realized that it helped him to have a printed schedule in front of him – something he’d had for years as governor and then president. Each morning he’d be given that printed sheet and he held onto it all day long.
One day, I came to see him and was told he was in the parking garage, in the back seat of the Secret Service car that always drove him, and he wouldn’t get out. I went down there and he was upset and agitated. He seemed to think there was a serious risk to getting out of the car. I tried to talk to him and he snapped at me, clearly annoyed by my inability to understand him.
Suddenly I felt like a kid who’d screwed up, who’d angered the parent who hardly ever showed anger. I pushed aside the feeling and suggested we drive around the block a couple of times.
It worked. By the time we got back, he’d forgotten whatever had made him upset. A person with Alzheimer’s lives in the moment; it’s a rhythm change that most of us find difficult to adjust to. But it has its benefits. I realized I didn’t need to sink into the feeling of being a kid who had misbehaved. At that point I was taking on an odd parental role, employing diversion tactics that work with fussy toddlers as well as they do on those with dementia.
On another day, I arrived at my parents’ home to find my father poking at his eyes, believing he had his contact lenses in. He didn’t. My mother was in a futile quest to stop him. I removed one of my own lenses, showed it to him, put it back in my eye, trying to prove to him that he wasn’t wearing lenses anymore. It didn’t work. Finally, we settled on walking him around the house. Once again, changing the scenery and his focus.
Dealing with Alzheimer’s is a series of small lessons, with huge gaping emotions beneath. I led my father like a child, the way he once led me.
My family’s journey ended on a June day, just as the thick morning fog had burned off and the sun was coming through. It ended in the room where my father had been bedridden for three years, in a moment of stunning beauty when he opened his eyes one last time and looked at my mother. Then he was gone.
Except no one is ever really gone – he taught me that, too.
He lived a huge life and left much behind – a soaring legacy and historical changes that students and scholars will study for years to come. But he also left behind a daughter who, once again, learned about tides and unpredictable seas. With all the regrets I have in my life, that ten-year odyssey when Alzheimer’s chose my family was one thing I got right, because I trusted what my father had taught me in the brighter, easier days when we were all younger and didn’t know what time had in store for us.
We carry on people’s memories in different ways. I feel my father’s presence every time I try and ease the loneliness of someone else’s journey. I see again his eyes opening, twinkling the way they always did when he felt all was right with the world, and I remember him telling me that God has a reason for everything – we just don’t always know what it is.
The night before he died, I sat outside looking at the nearly full moon. We knew the end was close and I felt like death was the harbor that would end the long voyage we’d been on. In a way it did. But I know now that it isn’t really a voyage with an end. I’m still discovering what I learned in those years - what I held onto, and what I had to let go of.
I had to trust in faith and let go of certainty. I held onto what my father had taught me about tides – don’t fight them. Understand them, go with them, figure out how to slip out of them before they carry you out to sea. We’re not always meant to understand this life, he said, we’re meant to trust that beyond the deepest mysteries and the harsh blows of fate, there is a reason, and someday our souls will understand.
Patti Davis, daughter of the late President Ronald Reagan, is the author of eight books, two of which were national best-sellers. Her most recent book, The Lives Our Mothers Leave Us, was published by Hay House in 2009. The Long Goodbye, her memoir about losing her father to Alzheimer’s, published in 2005, has just been re-released as an e-book.
Patti has contributed to numerous magazines and newspapers over the past 20 years, and one of her screenplays, Sacrifices of the Heart, was produced by Hallmark in 2007. She has just finished a script about a fictional First Daughter, and is working on another novel titled The Myth of Water.
She recently started a program of support groups at UCLA for family members of Alzheimer's patients to give people a place in which to share their emotions and struggles. For more information, call 310-825-8253.
Related: Patti Davis: My Body, Then and Now
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All photos courtesy of the Ronald Reagan Library.