After Alzheimer's Diagnosis, 'The Stripping Away Of My Identity'
This is the second in NPR's series "Inside Alzheimer's," about the experience of living with Alzheimer's. In part one, Greg O'Brien talked about learning that he had the disease.
A diagnosis of Alzheimer's disease, says Greg O'Brien, doesn't mean your life is instantly over. "There is this stereotype that ... you're in a nursing home and you're getting ready to die," he told NPR. "That's not true."
In fact, in the five years since he was diagnosed with early-onset Alzheimer's, O'Brien has taken copious notes about his condition and published a memoir.
Alzheimer's, he says, is like "a death in slow motion."
"It's like a plug in a loose socket," he says. "Think of yourself, wherever you are in the country, and you're sitting down and you want to read a good book, and you're in a nice sofa chair next to a lamp at night. And the lamp starts to blink.
"You push the plug in and it blinks again and you push the plug in. ... Well, pretty soon you can't put the plug back in again because it's so loose, it won't stay there. And the lights go out forever."
When Greg O'Brien was 59 years old he was diagnosed with early-onset Alzheimer's. Now, he's documenting his experience with the disease.
Interview Highlights
On putting his assets in his wife's name
The doctors told me that I needed to turn everything that I had over to my wife. I'm not allowed to own anything anymore. That was a difficult thing for me because our house on Cape Cod, which I had built, was exactly the kind of home that I wanted to live in and raise my children in. And now I felt that I was a renter.
And that was the beginning of the stripping away of my identity. And I knew no one got that but me. You know, God bless all the doctors and many of the caregivers in the world, but it's really the people who are fighting through early Alzheimer's who ... who get it.
And ... now I forgot the rest of your question. Can you repeat it?
On waking up confused each morning
I don't have a self-identity; I have to find it. I'm an old-school guy, and I think of a file cabinet and think of the who, where, what, when, why and how of your life, arranged in files in this filing cabinet. Then at night, someone comes in and they take all the files out and they throw them all over the floor.
And then you wake up in the morning and say, "Oh my God, I have to put these files back before I realize my identity."
On labeling everyday objects
Right now I have to label toothpaste because I'll grab for soap or lotion and brush my teeth. I also label mouthwash, because there was a time when I grabbed the rubbing alcohol. Knowing, looking at it — it said rubbing alcohol, Greg!
But I said, "No," and I took a swig. Let me tell you, rubbing alcohol doesn't have a thin, minty taste.
On short-term memory loss
Sixty percent now of my short term memory can be gone in 30 seconds. More and more, I don't recognize people. And now people understand that and, God bless them, they come up and introduce themselves to me. These are people I've known since childhood.
In addition to my short-term memory loss, there are times when I've hurled a phone across the room, a perfect strike to the sink, because in the moment I didn't know how to dial. I'll smash my lawnmower against an oak tree in the backyard in summertime because I don't remember how it works.
I cry privately. It's an emotional thing, the tears of a little boy, because I fear I'm alone and the innings are starting to fade. You know, a fish rots from the head down.
Greg O'Brien will share more of his experience with Alzheimer's in future installments on Weekend All Things Considered.
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Transcript
ARUN RATH, HOST:
Last week, we heard from Greg O'Brien. At the age of 59, he was diagnosed with early-onset Alzheimer's.
(SOUNDBITE OF ARCHIVED BROADCAST)
GREG O'BRIEN: There is a stereotype that Alzheimer's is just the end stage when, you know, you're in a nursing home and you're getting ready to die. And the point is no, that's not true.
RATH: Today, Greg takes us into his everyday life, five years after his diagnosis. In 2009, Greg was a working journalist. He owned a home on Cape Cod where he had raised three children. Now, a lot has changed. Here's Greg.
O'BRIEN: What Alzheimer's is in layman's terms, it's like a plug in a loose socket. And think of yourself, wherever you are in the country, and you're sitting down and you want to read a good book, and you're in a nice sofa chair next to a lamp at night. And the lamp starts to blink. And you push the plug in and it blinks again. You push the plug in, and you're getting a little annoyed. Well, pretty soon you can't put the plug back in again because it's so loose it won't stay there, and the lights go out forever. And that's what Alzheimer's is.
The doctors told me that I needed to turn everything that I had over to my wife. I'm not allowed to own anything anymore. That was a difficult thing for me because our house on Cape Cod, which, you know, I had built, was exactly the kind of home that I wanted to live in and raise my children in, and now I felt that I was a renter.
And that was a beginning of the stripping away of my identity. And now I forgot the rest of your question. Could you repeat it? And this is going to happen on this a little bit. But, you know, I had a good answer and I just can't remember it.
I don't have a self-identity. I have to find it. I'm an old-school guy. And I think of a file cabinet and think of the who, where, what, when, why and how of your life arranged in files in this file cabinet. And then at night, someone comes in and they take all the files out and they throw them all over the floor. And then you wake up in the morning and say oh my God, I have to put these files back before I realize my identity. And that's before I go to the bathroom. And, you know, right now I have to label toothpaste, because I'll grab for soap or lotion and brush my teeth. And I also - I label mouthwash because there was a time when I grabbed the rubbing alcohol - knowing, looking at it - it said rubbing alcohol, Greg. But I said no, and I took a swig. And let me tell you, rubbing alcohol doesn't have a thin, minty taste.
Sixty percent now of my short-term memory can be gone in 30 seconds. More and more, I don't recognize people. And now people understand that. And God bless them, they come up and they introduce themselves to me. These are people I've known since childhood.
Right now, you know, in addition to my short-term memory loss, there are times when, you know, I've hurled a phone across the room, a perfect strike to the sink because in the moment I didn't know how to dial. And I'll smash my lawnmower against an oak tree in the backyard in summer time because I don't remember how it works. I cry privately. It's an emotional thing, the tears of a little boy, because I fear I'm alone, nobody cares and the innings are starting to fade. You know, a fish rots from the head down.
You want an honest answer? What am I looking forward to most now? Making sure that my wife and kids are taken care of and going home to heaven. I've got to tell you, this fight - I don't know how much longer - excuse me - I don't how much longer I can do it. I mean, you've got - you've got the Alzheimer's thing that the progression goes, and then you've got the toll that it takes on you. I don't know how long I can keep this fight up. It's 24-7. It sucks. And there are days when I just want to go home.
RATH: Greg O'Brien is a writer on Cape Cod. His memoir is "On Pluto: Inside The Mind Of Alzheimer's." Greg is still fighting the disease every day and he'll be sharing his experience with us as he does. You can read more about him and hear previous installments in this series at our website npr.org. Transcript provided by NPR, Copyright NPR.
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