Greg O’Brien has a unique perspective on what it takes to be a caregiver.
In fact, his point of view on caregiving is unlike anyone else’s, particularly when it comes to caring for someone living with Alzheimer’s Disease.
O’Brien’s caregiving story began over twenty years ago in Cape Cod, where his parents had moved from Long Island following his dad’s retirement. O’Brien was the oldest boy in a family of 10 and was the only one of his siblings living in the area at the time. There, following a few great years of retirement for his parents, O’Brien began to see firsthand the physical, emotional, and cognitive challenges caregivers can face.
Alzheimer’s That Runs in the Family
While Greg O’Brien’s dad did develop dementia towards the end of his life, it was other serious issues with his health that thrust his mom into the role of caregiver. “Unremittingly, she cared for my dad,” O’Brien wrote in his book, On Pluto: Inside the Mind of Alzheimer’s.
O’Brien has had a front-row seat to Alzheimer’s disease in his family. His maternal grandfather and paternal uncle both experienced severe cognitive decline at the end of their lives. And now, while his dad was battling multiple health issues, including dementia, Greg and others began noticing that his mom was also experiencing cognitive issues of her own.
As his mom’s memory problems progressed, eventually leading to her own diagnosis of Alzheimer’s disease, she continued to care for her husband while “always refusing to succumb to disability.” Then came an extraordinary reversal: after a rough patch and a hospitalization, O’Brien’s mother reached a breaking point and asked him to “take over.” It was now Greg’s turn to take on greater caregiving responsibilities.
Being a Caregiver Living with Alzheimer’s Disease
O’Brien has been a professional journalist his entire adult life. And while he tried to ease the burden of caregiving on his mother by taking on some of those responsibilities himself, he could not help but be amazed when he considered how far she had come without asking for help. “She taught me how to fight,” wrote O’Brien. “How to live with Alzheimer’s, how to never give into it.”
“My mom became my role model in the resolute life she lived,” O’Brien says, though he admits he wished she had asked for help earlier. But even a career journalist and prolific writer like Greg could not imagine the plot twist his own story would take.
After watching the impact of his mom’s cognitive decline while she had cared for his dad, Greg would soon begin experiencing his own symptoms of the disease that runs in his family. At the age of 59, Greg O’Brien was diagnosed with Early-Onset Alzheimer’s disease.
Writing About Caregiving and Living with Alzheimer’s
Greg O’Brien is now 76 years old. Since his diagnosis, he has written a book, been the focus of several documentaries, given countless talks about living with Alzheimer’s disease, and serves as a board member for US Against Alzheimer’s. “I put a stake in the ground as a journalist and said we’re going to start talking about it,” O’Brien says in one of films about his Alzheimer’s journey, “Have You Heard About Greg?”
Even after nearly two decades of living with Alzheimer’s disease, Greg O’Brien continues to write. He writes from the perspective of someone who was a family caregiver, until he himself needed that same care and support. He talks frankly about living with the disease, using his investigative skills to share his experience inside the mind of the disease. He talks about his own loved ones—his wife, his son, and others—who have served as caregivers to him.
O’Brien also writes about his time as a young court reporter at the Arizona Republic, where he covered cases overseen by then-Maricopa County Superior Court Judge Sandra Day O’Connor. Justice O’Connor would retire from the United States Supreme Court in 2006 to care for her own husband living with dementia. She would count O’Brien as a valuable resource as she navigated her husband’s cognitive decline before experiencing her own dementia symptoms prior to her death.
Greg O’Brien’s most recent article, published this week on Psychology Today, follows the familiar formula of a career journalist who was taught how to fight a progressive disease from his tough-as-nails caregiving mom, while learning along the way that it is best to enlist others to help in the fight. The article blends his documented memories as a caregiver and his experiences receiving care with insights from a psychiatric nurse specializing in dementia.
He promised to keep writing about Alzheimer’s and to keep talking about the disease and how it affects everyone in its orbit. Each piece Greg O’Brien shares with an audience of caregivers across the country is filled with insights and strategies for those on the frontlines of dementia caregiving. His is a truly unique voice: that of “an investigative reporter living with Early-Onset Alzheimer’s, not dying with it.”
