The dragonflies swarmed in pairs above our heads, a hawk dropped in the distance, and the glass-like water sliced open with each slow stroke of our arms. Swimming beside me was my father. Once a powerfully large and imposing figure, my father’s arms and legs had become shriveled and his body gaunt. My attention to the slow unfolding of a late summer’s day continued to swing back to him. Was the water shallow enough for him to stand if needed? Was his increased weakness causing him to pause or was it a new gauze of confusion?
His nights were punctuated by vivid dreams — ones of spiders that any nightmare could hold. But perhaps more unique to this increasingly gentle giant of a man, falling from the world, were dreams of loss and hope that were like shadows of his seemingly outsized prior life as a political commentator and adviser to four presidents. Dreams of giving speeches to a great crowd but torrential rains coming and driving everyone away, leaving him alone and looking for us, his family. Dreams of running through airports, late for board meetings. Dreams of meetings with international leaders in Vienna. Dreams of meetings, speeches, and writings.
My father, David Gergen, has Lewy body dementia. Though it is the second most common cause of dementia after Alzheimer’s disease, Lewy body dementia is rarely talked about, and its exact causes are still poorly understood. As a primary care physician, I often explain LBD as a combination of Parkinson’s meets Alzheimer’s. People with LBD have abnormal aggregates of alpha-synuclein protein in their brain (these aggregates are called “Lewy bodies”) that cause a progressive neurological disorder.
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LBD’s symptoms include cognitive decline, motor symptoms (tremors, stiffness, slow movements), sleep disturbances, visual hallucinations, and autonomic dysfunction (affecting issues such as digestion). Those living with LBD also often suffer from depression, anxiety, and agitation. While there are medications that can help diminish some of the mood and physical symptoms, there are few clinical trials and even fewer medications specifically geared toward halting LBD.
Like so many millions of families whose loved ones suffer from terminal diseases, we were stunned by the diagnosis.
Watching the wrecking ball of Lewy body dementia careen into the fortress of my father’s mind has been devastating. And now, just four months after our afternoon swim, his body and mind have declined so quickly that it is impossible to imagine ever again accompanying him for a swim.
But on a recent afternoon as we were sitting together watching the migrating birds and capturing the last of the autumnal sunshine, my father awoke to more words of clarity. I ran for my pen and tried to capture some of his departing thoughts, many of which were words of advice for our country — one that he has spent his life dedicated to and believing in.
Like the migrating birds above us, his thoughts moved quickly across the sky and then were gone. And while there are certainly treasure troves of words written and spoken by my father when he was well, I wanted to share his waning reflections here, as perhaps some of them contain the ingredients we need for the future healing of our society.
On service: “As awful as life is currently in the public sphere, there is still reason to believe in our country and its leadership and to go into service. The country has given a great deal to us and lots of people have been killed or lost their families for our country. We must give a salute to those who are trying to change the country and have fought for our country. Young people entering national service — military, AmeriCorps, Teach for America — people like that are holding things together. There should be more people that should run [for office] and contribute for a few years.”
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On future generations: “Many in the next generation are going to the best schools and not giving back what is remotely needed by our country. We need to continue to ensure that we have people in the next generation out front pulling the wagon — innovators and people in the public sector — delivering on the goods.”
On resilience: “Working through years when you are challenged and being pushed down, you grow. On the cusp of the Civil War, people were grieving the loss of life on farms and villages but leaders like Dwight Eisenhower reminded people to accept responsibility and move on. We do not need to continue to relive the past. Americans can endure any crisis, but they need to continue to take a sense of responsibility for their country.”
On heroes: “Remember the Greeks who said, ‘Pity the country who has no heroes. No, pity the country that needs heroes.’ … But I would argue we do need heroes, and good-hearted people are more heroic than those who are simply smart.”
On fear: “We are going through a period of fear. People are terrified. We have been tested, we are being tested now, but we must recognize that politics in our country is like a pendulum. The pendulum has swung back in a way that may be very dangerous. But books such as Arthur Schlesinger Jr.’s ‘The Cycles of American History’ show us that as a country we have been here before. We must hold onto the inspirational moments of our history and use them to light our path forward. … I keep thinking about Martin Luther King Jr.’s ‘I Have a Dream’ speech — and though we still have so far to go as a country, you could not have imagined everything that could have happened from that moment.”
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On the strength of our country: “This is a country that has carried the weight of the world. We carry the intellectual leadership and have the highest number of Nobel laureates in the world. We have a dynamic economy, host the great universities and centers of education, and are leaders in innovation and technology. We have the strongest military and some of the greatest medical breakthroughs, such as vaccine development. We still have a strong global leadership presence, though we must not take that for granted.”
On purpose: “Bill Moyers once wrote that to be a fulfilled person in today’s world, people must shape their purpose. If everyone needed to put three logs into a fire in their lifetime, my question would be ‘what are your three logs?’ ”
On timeliness: “In Ecclesiastes, we read ‘Is there anything new under the sun?’ Ultimately, we know that everything here has been said before but must be said again.”
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As we wrapped up our conversation, the sun was setting. I realized in my grief that many of these lessons had indeed already been taught to so many of us, both near and far. And while my father used to be the first phone call I received after finishing an interview on public radio or having a piece printed in public media, he is no longer able to call. But his voice remains, pushing me and so many others to be courageous in bringing forward our own wisdom, moderation, sense of public service, hope, and purpose into this very much alive and ever-changing world.
Dr. Katherine Gergen Barnett is vice chair of Primary Care Innovation and Transformation in the Department of Family Medicine at Boston Medical Center, an associate professor at the Boston University Chobanian & Avedisian School of Medicine, an associate at Harvard’s Center for Primary Care, and a health innovator fellow at the Aspen Institute.
Note: For a personal letter to the Gergen family, please send to davidgergenfamily@gmail.com. For a Globe letter to the editor, please send to letter@globe.com.
