Greg O’Brien is an award-winning investigative reporter who’s written for many national and regional publications, including The Washington Post. He was diagnosed with early onset Alzheimer’s at the age of 59 after a traumatic brain injury. Unfortunately, O’Brien has had lots of experience with the disease. Both his late parents and other close family members had it, but that wasn’t going to stop him from living his best life for as long as he could.
Continued Optimism Years After His Diagnosis
Thirteen years have passed since his diagnosis, and O’Brien’s tenacity as an investigative reporter has taught him to live with Alzheimer’s, “not to die from it.” He is still thriving because he decided to approach the disease with faith, hope, and humor. Surrounded by his family, O’Brien pushes aside the stigma of Alzheimer’s and vows to educate others on a diagnosis that is often subject to a conspiracy of silence.
In an effort to get the word out about Alzheimer’s and his experience, O’Brien wrote the international bestseller On Pluto: Inside the Mind of Alzheimer’s to get the conversation started about the disease with all the family members, friends, and caregivers around the world who are impacted.
Feelings that O’Brien Experienced
In his book, O’Brien talks about the feelings of denial that he experienced early on. He describes how he quickly pushed them aside as he recognized symptoms in himself that he saw in his family members who had the disease, such as short-term memory loss, seeing things that weren’t there, loss of place, and loss of self. He got to a point where he couldn’t multitask as a journalist anymore or take care of his parents. He remembered taking the gene test and finding out that he carries the APOE4 gene, from both his mother’s and his father’s sides. He’ll never forget being in the neurologist’s office and getting the diagnosis of Early-Onset Alzheimer’s that he already knew was there. Unlike many who experience shock, he found it comforting. According to O’Brien, “(i)f you want to fight an enemy, you have to know who the enemy is. And I was out of my mind with fear. And finally knowing who the enemy was, there was a comfort to that.”
He describes how he got emotional one day, grabbing his wife Mary Catherine’s hand. He thought about his children and grandchildren. He vowed to spend time with them, while he could, thinking of the blessing of how early diagnosis can help with strategies and medication.
Greg O’Brien offers the following advice to others who have been diagnosed with Alzheimer’s:
- “Persevere. Fight it. Talk about it. Get it out into the open.” The way O’Brien does this is by being a public spokesman and advocate for the disease. He serves on the UsAgainstAlzheimer’s board in Washington, DC; he’s an advisor to the Cure Alzheimer’s Fund of Boston; and he’s done a lot of work over the years for the Alzheimer’s Association.
- “Get the right sleep and eat the right diet.” O’Brien sticks to a Mediterranean diet and tries to get eight hours of sleep each night.
- “Fight against social withdrawal.” O’Brien feels like there aren’t a lot of people he wants to be around anymore, and he has to fight against that. Greg describes how uncomfortable he is at family reunions, even with his own family. According to O’Brien, “(m)y brain is like my iPhone, still a sophisticated device, but has a short term battery, pocket dials, and can get lost very easily. Let’s say I go into a room where there are a bunch of people that I’ve known for all my life. 70%, I won’t know who they are, but I’ll know they’re a person of interest. I’ll work the room, shake a hand, look someone in the eye and say, how are you doing? How’s your family? I have no clue who they are. And I’ll walk out and I look for an exit door. After I work the room, I then go sit by myself for an hour and a half.”
- “Take good notes.” When O’Brien got his diagnosis, he was worried about things he would forget. He took lots of notes on information including anecdotes and family stuff — close to 2,000 pages of notes that he used to write his book. He always has his laptop with him, and he’s always taking notes. He puts information into categories and even saves emails to provide background on past events.
- “Hope is not giving up.” According to O’Brien, “(l)ying down and wrestling is a position of defeat. Hope is saying, okay, I have issues, but how can I make chicken salad without mayonnaise? Hope is realizing that there are people out there that are really hurting. This afternoon, I’m interviewing a very close friend of mine who has ALS. When I go to church, I’m sitting there, I’m not worried about me. I’m worried about him, praying for him. And you look and try to give hope to other people and try to reach out to them. That gives you purpose.”
- “Sometimes you can feel it coming on.” O’Brien describes how his brain just shuts down without notice, and that’s when he goes into “tremendous rage.” There are times when he can feel it coming on. According to O’Brien, “(i)t’s almost like being out on the water, say Cape Cod. And in the distance, you see the fog coming in. And you turn the boat around and race to safe harbor. And I can feel at times, the fogginess coming up the back of my neck, over my head, and into my forehead. And that’s a slower thing. So it’s like someone turns the light off, and sometimes you can feel it coming on.”
Steve Ecclesine Makes Documentary about O’Brien’s Journey
O’Brien’s book and speaking engagements inspired the documentary “Have You Heard About Greg, A Journey through Alzheimer’s with Faith, Hope, and Humor.” The idea happened at a 50-year high school reunion when one of O’Brien’s childhood friends asked film producer Steve Ecclesine, “Have you heard about Greg?” Turns out both of their mothers had died of Alzheimer’s. After reconnecting at a caregivers’ conference in Scottsdale, Arizona, where O’Brien was the keynote speaker, Ecclesine realized he wanted to tell a powerful story about O’Brien, who he sees as “a real-life hero on a real-life hero’s journey and attempt to put a human face on a most dreaded disease.”
Currently, there are over 6 million people living in the US who have been diagnosed with Alzheimer’s and other forms of dementia. The goals of the film are to get people talking about the disease that “threatens to destroy the US health care system along with millions of lives by 2050.”
“This film truly underscores the crucial sense of urgency needed to address this devastating disease and the importance of clinical trials,” said O’Brien. “I’m grateful to have this platform to share my story and help others cope with some of the things I face all the time along with my family.”
The film appeared in select theaters nationwide last spring. For details on how you can view the film on Amazon Prime, click here.
How Can You or a Loved One Stay Optimistic After an Alzheimer’s Diagnosis?
An initial diagnosis of Alzheimer’s disease can be overwhelming for patients. Emotional stress, along with cognitive changes, memory loss, and physical deterioration can lead to sadness and depression. Losing interest in activities that used to be meaningful, withdrawing socially, and a general attitude of passivity or “giving up” on life are all potential responses to a diagnosis. Similar to Greg O’Brien, it’s important for you to address these feelings. Here are some things you can do:
- Focus on activities that provide enjoyment and a sense of meaning is a great way to stave off depression and improve quality of life.
- Encourage individuals with Alzheimer’s to take part in things that bring them joy, provide a positive distraction, and promote the retention of cognitive abilities.
- A comfortable environment, meaningful activities, healthy diet, regular exercise, and an active social network can help relieve depression and improve patients’ quality of life.
- For loved ones, take the necessary measures to ensure your mental and physical well-being is stable. After all, a caregiver’s emotional health is one of the most influential factors in a patient’s life; if you are optimistic, your loved one will be as well.
I hope that some of these tips and the advice of Greg O’Brien help those who have been diagnosed with Alzheimer’s and their caregivers maintain optimism. For more details on the Alzheimer’s diagnosis, please read my articles on the subject here.
Planning for Long-Term Care
Here at the Farr Law Firm, we are dedicated to easing the financial and emotional burden on those suffering from dementia and their loved ones. If you have a loved one with Alzheimer’s or another form of dementia, it is likely that your loved one will eventually need continuous licensed nursing care in a skilled care facility as the disease progresses. Nursing homes in the DC Metro area cost between $12,000–$14,000 a month, which is a catastrophic amount for most of us. With proper planning, Medicaid will pay for most or all of the nursing home expenses.
In cases where a family member is in the early stages of dementia or Alzheimer’s disease, early planning is especially important. The family member needs to make decisions about financial matters while the person still has the mental capacity to do so. Please call us as soon as possible to make an appointment for a consultation:
Fairfax Elder Law: 703-691-1888
Fredericksburg Elder Law: 540-479-1435
Maryland Elder Law: 301-519-8041
DC Elder Law: 202-587-2797
About Evan H Farr, CELA, CAP
