One year ago, we visited Greg O’Brien, a journalist attempting to document his own decline into early onset Alzheimer’s disease. Now he discusses the past year and the difficulties he’s meeting as his disease progresses.
- Greg O’Brien, author, On Pluto: Inside the Mind of Alzheimer’s
Links for more info:
15-45 Alzheimer’s From Inside
Reed pence: For more than 35 years, Greg O’Brien was an award-winning newspaper reporter in New England. He’s covered presidents & politics, and written more front-page stories than you can count. But he says the biggest story he’s ever covered… Is all about him. And the story will go on as long as he can tell it. Five years ago, at age 59, O’Brien was diagnosed with early onset Alzheimer’s disease. Now he’s devoting the rest of his life to documenting what it’s like to lose his identity, piece by piece. The product so far is a memoir titled on Pluto: inside the mind of Alzheimer’s.
Greg O’Brien: This is a blessing in its own way for me because I know the ending. It’s like I know the ending of the story I’m writing. And I felt that the lord was telling me “Hey pal!” this is the most important story of your life. I’ve written about the mafia, I’ve covered Supreme Court justices, I’ve covered politics around the country. I’ve covered just about every imaginable story. And I feel that god is telling me that this is the biggest story of your life and you tell it and you tell people to walk in faith, walk in hope, walk in humor and walk to try to live with Alzheimer’s not die with it and in the process encourage others to try to maybe raise the visibility so we stop this demon.
Reed Pence: O’Brien knows the end of the story all too well. He says that both his grandfather and his mother died of Alzheimer’s. He could only watch as his beloved mother desperately tried to hang on to her mind, caring for O’Brien’s dying father, until she couldn’t take it any more.
Greg O’Brien: Were in the emergency room and she said “Greg would you take over?” And I said “Sure mom I’m gonna go get the doctor and he’ll take care of dad”. She held my arm again I’m the oldest boy in a family of ten and she said “No Greg would you take over?”. She was saying goodbye. There are no two cases of Alzheimer’s that are the same. This woman fought it like I’m doing and fought it and then it took her out. And I looked at her like I was watching someone holding onto a dock on an outgoing tide. She drifted out. Within 5 minutes she curled up into my dads hospital bed like a kitten. And her progression from there increased rapidly and within a year she was dead.
Reed Pence: That personal connection drives O’Brien to warn that hundreds of millions of people will share this Alzheimer’s story in the next few decades. And they’re not all in their 70’s and 80’s. O’Brien now realizes he started having memory problems in his 40’s, when he began to fail to recognize familiar people and places. But it took a battery of tests after a serious head injury to get a diagnosis. By then, O’Brien had already considered that what had happened to his mother and her father might also happen to him.
Greg O’Brien: When I realized something was wrong seven years ago by the way I started writing down detailed notes while I knew I could. Detailed anecdotes. I compiled about 650, 700 pages of notes of anecdotes from my childhood from watching my Mother and my Grandfather to make sure that that long-term memory was locked up. You know you try to put on a good face and I try but you know my Mom gave me high intellect and I know what’s happening and it’s scaring the crap out of me.
Reed Pence: Today O’Brien is entering the middle stages of Alzheimer’s. He says that every morning, his brain seems to have turned into a room with file folders strewn all around, and he spends the entire day trying to pick them up. Some days it doesn’t go well.
Greg O’Brien: 60% of my short-term memory is gone in thirty seconds there are times where I don’t recognize where I am in familiar places. There are times when I don’t recognize familiar people, on two occasions my own wife. There are times when I see things that aren’t there. There are times when I am in intense rage as a result of the disease and sometimes that’s out of frustration and other times it’s a complication from the disease when I pick up the phone sometimes and I don’t remember how to dial. I’m a lawn guy and I pick up my sprinkler, I have an acre and a half of lawn on Cape Cod, and I don’t know what the sprinkler is and in anger I throw the sprinkler against an oak tree and try to break it up into a million pieces.
Reed Pence: One thing that makes coping so hard is that O’Brien never knows how much of his memory will show up at any given moment. Sometimes it’s good. Sometimes it’s gone.
Greg O’Brien: Imagine a light that’s put into a socket where the plug is loose and it doesn’t fit into the socket and the light flickers. And you don’t know when that’s gonna happen and every once in a while the plug falls out and the light goes dark and you pick the plug up and you put it back in. And then your sitting there reading and the light flickers again and it falls out and at some point it falls out and you can’t put it back in. The Rage comes from not knowing when this is going to happen. You often don’t know who is gonna show up every day.
Reed Pence: O’Brien says he regrets the rage–after it’s gone. Emotional swings are a hallmark of the progression of his disease. Sometimes, there’s despair in knowing what lies ahead, as he experienced three years ago when a prostate biopsy started to bleed.
Greg O’Brien: For three days I was hemorrhaging and I didn’t tell anyone because I thought that was my ticket out. In the end I lost eight pints of blood. I remember being in the same emergency cubicle where my Mother had let go and when you lose eight pints of blood you’re on the edge. Some people are gone at that point. And I had a come to Jesus moment where I felt I didn’t have the right to do this.
Reed Pence: Still, O’Brien doesn’t plan to stave off death as long as he can. He has prostate cancer, but won’t have it treated. And he has his low moments, when he cries in fear that no one cares.
Greg O’Brien: One of the toughest things for people with Alzheimer’s you feel your alone, sure people come up and say I support you but in those darkest moments man your out there your alone I don’t care what anyone says. And that’s where my faith has lifted me up and I know God’s there. I know some people like to hear that and some people don’t but that’s my reality today and I’m as imperfect a person as anyone else. I just feel that I’m going to a better place someday and maybe I could do something right and honor my mother and honor my grandfather on the way out.
Reed Pence: O’Brien plans to
do that by describing his descent for as long as he can in a way people can understand. His experiences seem to represent the struggles that many Alzheimer’s patients go through. But it appears that no one this far into Alzheimer’s has ever written much about it for public consumption… Or been able to tap the remaining mental reserves to talk about it. But O’Brien says it makes sense that it’s taken a reporter to do it.
Greg O’Brien: Alzheimer’s I believe what it tries to do is it attacks the weakest parts if you’re willing to fight it. The creative side of my brain has always been the stronger side it’s attacking the executive type functions. Doctors tell me that they believe that I will write and communicate with declining articulation right until the end just as my mother did
Reed Pence: Today O’Brien’s office is lined with scrapbooks and clippings that remind him of who he was as his memories slowly slip away. The oldest memories will stay in his mind the longest—the ones where he’s the oldest son of 10 kids in an Irish catholic family. O’Brien admits he retreats into his childhood in his mind as much as he can. It’s the safest place he can remember. But he no longer believes that when those memories are gone and nothing is left…that his identity will have vanished.
Greg O’Brien: We can lose our memories and when you lose the memory your soul that person is still inside. I believe whether it’s Alzheimer’s or autism or whatever the affliction is that inner soul, that inner sense of who that person is never goes away. Even when memory fails. And my Mother taught me that.
Reed Pence: O’Brien says he learned that unfailingly on the night his mother died. She had lost all of her memory by then… Until one final moment that proved she was still there.
Greg O’Brien: Her little eyes closed and I kissed her and her eyes popped open and she couldn’t remember anyone’s name the week before and she said “Greg where are you going?” And I realized the moment and I said “Mom I’m not going anywhere. Were gonna ride this out together.” And I held her hand and I stayed there until her eyes closed and I kissed her. And those eyes never opened again. She knew who she was even though she had lost her memory in her moment to pass on.
Reed Pence: So it may be no surprise that as O’Brien sees his memories fading away in the same way, and contemplates his future… His mind returns to childhood… And to a search for his mother.
Greg O’Brien: I believe that when my time comes my mother is gonna be… Excuse me this is very difficult but… my Mother will be waiting for me on the other side. Right there. And she’ll say “You did well. You did good kid.” And that’s all I want to hear.
Reed pence: Greg O’Brien’s book, On Pluto, is available through his website, onpluto.org, and at amazon.com. It can be found in bookstores early next month. I’m Reed Pence.
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