In this excerpt from her deeply empathetic guidebook for dementia caregivers, author Patti Davis shares the lessons about grief that she learned from losing her father, Ronald Reagan, to Alzheimer’s disease.
We tend to think of grief as something we have to deal with after a loved one dies. Before that, as disease ravages the person we love, we refer to our sorrow, our despair, the waves of tears that come at odd times. But we don’t usually mention grief. We consider the weightiness of grief as something that awaits us at the end, after death. Alzheimer’s, though, is a death before dying. So grief needs to be embraced early on. You will watch as the person you know so well fades from view. Alzheimer’s piracy is unpredictable and unrelenting. The disease is in control; it will steal what it chooses when it chooses and there is nothing you can do to stop it.
When I sat with my father, I anchored myself in the faith that his soul was unencumbered by dementia. I imagined a clear, calm lake far beneath the choppy waters of Alzheimer’s. I felt I had entered a different reality, a sort of suspended state where I could look at the disease from enough of a distance that, no matter what was going on physically, his spirit still whispered to me. Those visits had a serenity to them, despite my sorrow. I would often drive away from my parents’ house and have to pull over to the side of the road to sit in my car and cry. This is my reality now, I told myself. I’m straddling two worlds—the spiritual realm of faith in the soul’s endurance, its imperviousness to disease, and the physical realm of loss, helplessness, and sorrow beyond measure.
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. But it doesn’t work like that. Grief is not biodegradable. You can’t send it out to the farthest field and wait for it to decompose. You might be able to avoid it for months, even years. But eventually it will come find you. When that happens, it usually stops you in your tracks with an illness, or an accident—something that will leave you no choice but to sink into the heartbreak you’ve been avoiding.
Taking time to grieve
Many years ago I knew a woman whose husband had died of cancer. He was at home for the last stages of the disease, after it was determined that there was nothing more the doctors could do. She took on the task of primary caregiver, allowing little or no help in the house. It wasn’t because of financial limitations, it was simply a choice she made. A couple of months after he died, she suddenly became agoraphobic—she couldn’t leave her house. She would open the door and a panic attack would slam her back in. She was wise enough to quickly figure out what it was. She told me that she had kept herself so busy caring for her husband, she took no time to grieve. When she was suddenly unable to leave her house, grief was all she had. She had little choice but to sit there and surrender to it. By the time I met her, she was fine—no more agoraphobia.
Floating in the Deep End: How Caregivers Can See Beyond Alzheimer's
We grieve because we have loved. The pain we feel when someone is leaving this world is the pain of a heart that opened itself, was willing to be vulnerable. If you never loved, you would never grieve. But that would be an awful way to go through life. I found myself being grateful for the slow pace of grief that comes with a disease like Alzheimer’s. I was grateful that I had time with the stages of loss, with grief’s different twists and turns. At nineteen, I lost a close friend very suddenly in a hiking accident. I remember the paralysis of shock, and how it took time to even begin mourning his death. I felt ill equipped to handle both the initial paralysis and the flood of emotions that came after.
As a child, I mourned the deaths of beloved pets. My father consoled me, talked about the beautiful times we’d had with them, and how those times would always be with me. We were always rescuing dogs who had been abandoned near our ranch, so another dog would be brought into our home shortly after an older pet died. My father believed strongly that even though you’re grieving, your heart needs to love, and filling the emptiness left by a pet’s passing was important. He was brilliant in teaching a child about moving through the sorrow that death brings into life, at least where it concerned animals.
But when my paternal grandmother died, I had to hide my sadness. I wasn’t supposed to know. I think my parents believed they were protecting me, but at ten years old I had become adept at eavesdropping and had heard through a closed door that Nelle had passed away. She had been put into a facility when she began showing signs of dementia, and the last time I saw her was when my parents took me for a visit. She was in a narrow bed in a room with about ten other beds. The walls were pea-soup green and the smell of urine hung in the air. It was 1962 and there were very few options for placing elderly people who couldn’t live on their own and could no longer care for themselves. I can still picture that room, I can still hear nurses padding across the hard linoleum floor, and I can still see my grandmother’s wide, empty eyes.
Eventually, my parents told me she had died, and I have a memory of saying, “I know,” but I’m not sure if I actually did say that. Grief had suddenly become confusing to me. Why, when one of our family pets died, could we talk about it and share our feelings, but when my grandmother died it was kept hidden from me? To this day, I don’t know if there was a service for my grandmother. As difficult as it may be to shepherd a child through the grieving process, it’s profoundly important. Those memories stay with us throughout our life. Our earliest lessons about sorrow and loss help form the foundation of who we are. I vividly remember the loneliness of knowing my grandmother had died but having to keep it to myself. I remember it as a physical pain deep inside my ribcage. And I remember the awful weight of questions—why wouldn’t my parents talk to me about it? Was it daytime or night when she died? Was she alone? I still don’t know the answers and I never will.
Each experience of loss is different
Recently I lost a friend of thirty-five years to a sudden heart attack. I got the news in the evening, and I felt the forces of denial and shock moving into me. I couldn’t cry. My mind knew it was true—he was gone—but my heart couldn’t absorb it yet. I couldn’t fathom the world without him in it. The next day, all I wanted to do was cry. I knew, from the moment I got the news, that I had to let grief move at its own pace. As familiar as grief becomes in our lives, each occurrence seems unique. When this friend died, I felt completely unprepared for the ravages of my emotions. Each time I experience loss, part of me watches the process as if I need to memorize it for the next time, yet I know that next time will have its own imprint and will not resemble anything that came before.
The long goodbye of dementia: The gift of time
My support group met one night shortly after the Orlando nightclub shooting. I remember looking around at the group members who were going through the long goodbye of dementia. It occurred to me that those who lose a loved one in this slow passage might reflect on the gift of time that has been given them. The family and friends of people who are murdered brutally in mass shootings never get to say goodbye, never get to sit beside that person and talk about the life they shared together. They never get a chance to reflect on death as it moves slowly toward them. For them, death comes in a blinding flash of gunfire. In an instant their sons, daughters, husbands, wives, friends are gone. And the victims of such shootings spent their last moments on earth staring into the heart of darkness. Evil defined the end of their lives. That’s profoundly different from the experience of being cared for, either at home or in a facility, where they will likely die between soft sheets, surrounded by people who care about them.
For those of us who lose someone to dementia, the one thing we have in abundance is time. The person who is ill also has time. Many things might be going on inside them that they aren’t able to communicate, so they might be benefiting from that time in ways we will never know. It’s a blessing to be able to say goodbye in stages. In the midst of grieving, it’s important to remember that death comes in many ways. And a long goodbye is actually one of the gentler ways. The pain is deep, the sorrow is vast, but it’s important to widen our view and consider the losses suffered by others.
The messy process of grief
Elisabeth Kübler Ross wrote about five stages of grief, and they are very real: denial, anger, bargaining, sorrow, and acceptance. These don’t necessarily unfold in a linear manner, though. Grief is a messy process. You can be deep in sorrow and suddenly stumble into denial. Or you can emerge into a clearing that you know is acceptance, only to find yourself slipping back into anger over the unfairness of the disease. As much as it can feel like Mr. Toad’s Wild Ride, giving in to whatever stage of grief you’re in is a healthier choice than trying to fight it.
When I was younger, I used to follow my father out into the ocean to bodysurf. He was fearless, heading out to meet huge waves, turning his back and swimming hard to catch the wave at just the right point so he could ride it to shore. He taught me everything I know about the sea, about tides and currents and waves. He taught me that if a wave is about to break on you, dive down deep to where the water is still and wait until it passes over you. He taught me that if you’re caught in a current that’s pulling you out, you’re going to be in more trouble if you fight against it. You’ll get exhausted, and the current will win. A better choice is to let yourself be carried for a while and wait until you feel it shift or weaken. Then you’ll have the strength to swim back. His lessons about the ocean always seemed to translate to lessons about life. I thought of them often throughout his illness.
How to handle grief: Keep swimming
There is something lonely and majestic in a swimmer cutting through the water, trailing bubbles and breaking the surface with a clean line of strokes. One of the ways I could always engage my father, even deep into the disease, was to talk about water—either the ocean or the river in the town where he grew up. Long after he had forgotten that he once commanded the world stage, long after he no longer knew he’d been president of the United States, he remembered the river. In the deeply rooted memories that Alzheimer’s couldn’t kill, he was plunging happily into deep waters, confident that he could master the currents. His eyes would light up when I began reciting to him the stories he had once told me—the icy-white afternoons skating on the river that was “wide as the town and twice as long,” and the long days of summer, diving into cool water.
“The river is deceptive,” my father used to tell me. “On the surface it looks calm, but underneath there are strong currents.” The stories and images that marked my childhood became my sustenance in adulthood, in the seasons of his leaving. I dreamt one night that I was standing on the banks of a river. I was all alone, and I knew I had to cross. I was shivering as I stepped into the water, and then the currents started pulling me. I swam hard but felt at some spots that the currents were too strong for me, and I might drown. I remember the sky in my dream—it looked like early evening, and I was scared that night would move in before I got to the other side. Then I suddenly felt hands pulling me and I glided smoothly through the water to the other side. I stood on the riverbank and looked back across the water; I saw a small shape in the distance, and in the dream I knew it was me—another me, before I crossed the river to the other side.
It was one of those dreams that never fade. It’s vivid to this day. I decided to tell my father about it. He was still in the early stages of Alzheimer’s, still going to the office for a few hours during the week. At home, he had started to regularly scoop fallen magnolia blossoms out of the pool. Since he had been forbidden to swim, I think it was a way to stay close to the water, and since he clearly enjoyed it, the Secret Service agents used to gather magnolia blossoms and throw them into the pool so he would have more to scoop out.
That’s where I found him late on a Sunday morning, sunlight slicing through the trees, the pool scooper rippling the water. I described my dream to him, told him how invisible hands had guided me across the river. I didn’t really expect him to say anything, but when I was done, he said, “You gotta keep swimming.” I have no idea what meaning lay behind those words, but it’s an awfully good description of how to handle grief. Keep swimming.
How grief reveals us
Michelangelo said that when he looked at a block of marble, he believed the shape that wanted to be born from it already existed. David, the Pietà, Moses were already there. His job as sculptor was simply to remove the excess marble and reveal the shape hidden within the stone. That’s how life is supposed to work. Our loves, our joys, our sorrows, and our losses are meant to reveal us—by chipping away at everything that conceals who we are capable of being so we can emerge as the people we were created to be. It just sometimes hurts along the way.
Patti Davis is the best-selling author of over a dozen books, including The Long Goodbye, a memoir of losing her father, Ronald Reagan, to Alzheimer's disease, and Floating in the Deep End, a handbook for Alzheimer's and dementia caregivers. In 2011, Davis created Beyond Alzheimer's, a support group program for family caregivers of people with dementia. This program has been offered at hospitals including UCLA Medical Center and Providence Saint John's Health Center, and can currently be found at Geisinger Medical Center in Pennsylvania and Cleveland Clinic in Las Vegas.