Greg & Mary Catherine O’Brien: “Show love always, and everything will fall into place.”

Read the Q&A with Greg & Mary Catherine O’Brien below.

WAM: You say that after watching others in your family be diagnosed with Alzheimer’s, the disease “is now coming to get you.” What was the first inkling you had that Alzheimer’s was encroaching on your brain, and what was your emotional response to that?
Greg: I had a front row seat for Alzheimer’s in my family and the passing of family members: first my maternal grandfather, then my mother, then paternal uncle, and before my father’s death, he too was diagnosed with dementia. I was the family caregiver for both my parents on Cape Cod, then over time, I began experiencing symptoms myself, brought on by a traumatic head injury (foolishly riding my bicycle without a helmet) that doctors said “unleashed a monster in the making.” I’ve also had several serious head injuries/concussions over the years from baseball and football injuries in high school and college; also I was in a serious car crash where my head hit the windshield.

Given the family history, I was never in denial.

Hearing my diagnosis of Early Onset Alzheimer’s (with my wife by my side), I could feel the tears running down my cheeks. I reached for my wife Mary Catherine’s hand and said: “What about the kids!”

From the start, I’ve been concerned about our children and all children in the next generation. Doctors say there may be a 50 percent chance in our family that Alzheimer’s or other forms of dementia will rear its ugly head.

Following a battery of clinical tests and brain scans, my doctors told me that I needed to share the diagnosis with family, friends, and those I worked for. So I did. After telling my daughter Colleen, son Conor, and son Brendan, all together in the family room, Brendan turned to me instantly and said, “Well Dad, that explains a lot!” The kids were concerned that something was seriously wrong with me. As I was concerned beforehand. The diagnosis put everything on the table for them and for me. If you want to fight an enemy, you have to study the enemy and find ways of pushing back.

So I did…

Doctors say head injuries won’t cause Alzheimer’s and other forms of dementia, but if one is predisposed to this, head injuries can bring it on earlier, as it did with me. I also carry the Alzheimer’s marker gene: APOE-4.

The path of Alzheimer’s take time. The experts say the pathology of the disease, in some cases, can begin in one’s 40s without noticeable symptoms—the buildup of plaques and tangles in the brain.

In my case, I began feeling the symptoms while being a family caregiver for my parents on Cape Cod: disturbing loss of short-term memory, loss of self, loss of place, confusion, anger, repeating myself, asking the same questions, and at times, seeing things that weren’t really there, as my mother did.

My focus in the book, “On Pluto: Inside the Mind of Alzheimer’s, and the documentary is to give others a view from inside Alzheimer’s and other forms of dementia, and to encourage others to press on. I would suggest those concerned about cognitive decline should get a clinical test through experts. There is a lot of help available now. It can be disastrous to walk this journey alone. I’d also suggest they call-up the following websites for help and knowledge:

• The Women’s Alzheimer’s Movement (WAM), founded by Maria Shriver
• UsAgainstAlzheimer’s where I serve on the board (UsAgainstAlzheimers.org)
• the Cure Alzheimer’s Fund in Boston where I’m an advocate; and where Dr. Rudy Tanzi of Harvard and MassGeneral is a world expert in researching a cure(curealz.org)
• the Alzheimer’s Association where I have contributed over the years to outreaches (alz.org).

Alzheimer’s and other forms of dementia can take many years to run its twisted course. There are always exceptions. Sadly, many on this course early on are afraid to seek help early on from family and others, fearful to talk about it. So they suffer quietly for years before a diagnosis. As most know, you don’t get Alzheimer’s or cancer on the day one is diagnosed. That’s a fact, and there is help now.

Regarding the family documentary, I agreed to participate because the Los Angeles producer Steve Ecclesine grew up with me in Rye, NY outside Manhattan. We were friends; our mothers were friends. Both died of Alzheimer’s.

WAM: You describe Alzheimer’s as a “24-7 fight known only to those on this journey.” Can you describe what it feels like during an ordinary day to have your brain under attack?
Greg: Regarding my brain under attack, often I don’t see it until missiles are launched; then there are other days when I both see it, and fear, that it’s coming. For those familiar with boating, it’s like being on a boat and seeing an advancing dense fog on the horizon, and then racing for the safety of harbor before the fog envelops.

On these days, I can’t outrun dementia; I just have to fight in faith, hope, humor, and working off the cognitive reserve I was blessed with. I gird myself for the fight to stay in the moment, refusing to surrender for now. Privately in these moments, I drop a lot of “F” bombs…

A friend once told me that his immigrant grandfather once advised him: “Never mess with the stubborn Irish because they don’t know now to die!”

WAM: We’re an aging nation with more of us likely to be diagnosed with Alzheimer’s or dementia. What advice do you have about what to say and do when someone we love gets this diagnosis? Is there anything at all that is helpful to say or do?
Greg: The most powerful response to someone in the throes of Alzheimer’s and other forms of dementia is: LOVE. Those on this journey before the end stage are generally aware of the drifting, loss of memory, loss of place and the like. Not only is it deeply depressing, it can feel like an out-of-body experience. “This is not me!” I shout back at the demon. “You can’t have me now!”

There is strength in numbers and in Alzheimer’s and other forms of dementia, we need to fully and tightly circle the wagons in more love and support.

It is an inexorable journey, never knowing what the day will bring in terms of Greg’s confusion, loss of self, loss of place, his anger (mostly at himself), and other daily challenges. But Greg presses on, perhaps the journalist in him. He doesn’t feel sorry for himself; he feels sorry for others on this journey. He’s lost a lot of friends to Alzheimer’s and other dementias.

But Greg can’t press on alone. As a family, we’ve rallied around him—me, son Conor, daughter Colleen and son Brendan. Early on, Conor more than others.

Conor became Greg’s day-to-day caregiver while I was still teaching. We lost Conor a year ago last July from Grand Mal Seizures. He was 33. This has been devastating on all of us, perhaps in some ways more on Greg. Conor was living with us at the beginning of this journey. He began to take over caregiving, driving and traveling with Greg across the country on speeches and interviews. Conor and I leaned on one another on a daily basis. We shared our frustrations with Greg’s behavior. Conor and I especially found his rage, bad language, loss of filter, confusion very difficult to take. However, we also laughed and shared stories of things Greg did, that in another story would be considered “stupid behavior!” One has to have a sense of humor to get through all this.

On the caregiver front, it is critical, where possible, to have support from others, a backup, as we had with Conor and me. Notes the “Alzheimer’s Association, “ Alzheimer’s caregivers frequently report experiencing high levels of stress. It can be overwhelming to take care of a loved one with Alzheimer’s or other dementia, but too much stress can be harmful to both of you.”

WAM: Lots of people feel too ashamed or embarrassed to speak about their diagnosis, often leading them into a world of social isolation. Has it made life easier or more complicated for you and your children that Greg is so open about his experience?
Mary Catherine: Greg and I have a large extended family, and that’s tremendously helpful. Greg, one of ten kids, was raised outside Manhattan in Rye, NY on Long Island Sound. His dad was raised in the Bronx; his mother on Manhattan’s Upper West Side. I’m a polar opposite, raised on a rustic 1,120-acre ranch about 20 miles outside Phoenix in the 1950s

After Greg’s diagnosis, I was reluctant to talk with anyone about it, outside of family. I didn’t then know a lot about the disease and kept to myself about it. It wasn’t until a Boston television show, with host Anthony Everett, did an incredible half-hour segment on our family—one that won an Emmy and a National Headliner First Place Award—that the story hit hard at home. I never imagined the wide viewing it would get in my small little world on Cape Cod. The segment, I’m told, had hundreds of thousands of hits on Chronicle’s website. When I arrived the following morning at my teaching assistant job at Nauset Regional Middle School in Orleans, I was greeted with scores of tearful hugs, encouragement, flowers, and generous offers from our three caring guidance counselors that “their door is always open.” So thanks to Chronicle and Anthony Everett, everyone on Cape Cod knew, and I needed now to accept the disease as well.

WAM: What’s the hardest thing for you to watch as Greg battles Alzheimer’s?
Mary Catherine: One of the hardest things in this disease is to have patience with Greg on this journey. He constantly repeats himself and requires me to repeat myself with responses to his questions. He constantly forgets commitments, days of the week, constant repetition of information and questions that I’ve answered numerous times.

Now, I know the professionals suggest to be kind to the memory loss, but it’s so hard not to say: “I know Greg, you’ve told me hundreds of damn times!” I’m caring, but human like all of us.

What keeps us moving on is Greg’s Irish stubbornness not to give in to this disease— a black hole slowly sucking him in, often beyond the notice of others. It so upsets Greg when people don’t get the fact that he’s head-butting Alzheimer’s, rather than giving in. He also has prostate cancer, deep depression, and an advancing, gradual breakdown of mind and body.

Greg still hides a lot from us. But told me recently, “I am scared!” Countless times during the day he says, “I’m so confused…I’m so confused.” A lot of times, he just yells loudly; he’s angry with himself that this is happening, not angry at anyone else.

It’s sad to see this. I didn’t sign up for this, but I love Greg.

With Greg, it always has been about brains, about writing, about journalism—not material possessions.

Greg’s intense focus, I think, helps to keep him going. Others agree. Greg’s forceful faith in the Lord drives him as well…He’s an imperfect guy, and he will tell you that, but perseveres in God. He has deep faith–how anyone wants to define it, and he knows the Lord has his back.

We cry a lot; Greg visits Conor’s gravesite near by regularly. He bought the plot next to Conor.

Conor was Greg’s day-to-day caregiver, while I was still teaching. I couldn’t travel then, but was assisting at night and on weekends. We all played a role. Greg, all along, tried to keep us laughing, but he kept repeating his jokes, a part of the trek through this valley. Conor and Greg traveled the country together, speaking to groups of 500 to a thousand, and giving interviews when ask about how to fight, push back, on Alzheimer’s. Conor participated in all this. He was an All-Star in his own way.

I couldn’t have gotten through all this without the love and support of my children and extended family on both sides of the aisle.

We were all—Conor, Colleen, Brendan, Greg and me—featured in the Los Angeles documentary on our family journey, Have You Heard About Greg? It played in select theaters a year ago from LA to Manhattan, is now available online, and is airing on many PBS stations throughout the country. The film keeps Greg’s memory alive of Conor.

One of the most powerful words in the English language is: Family.

WAM: The same question we asked of Greg: What words of advice do you have about what to say and do when someone tells you that they have been diagnosed with Alzheimer’s?
Mary Catherine: I would agree with Greg, as he has said repeatedly in speeches and in interviews. The answer is a four-letter word: L-O-V-E.

Show love always, and everything will fall into place.