inside alzheimer’s…o’brien #2

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…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…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.

There are times when I, 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.

Alzheimer’s…is like ‘a death in slow motion.’

It’s like a plug in a loose socket… 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.

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.”

LISTEN! IT’S 24/7.

What is there to look forward to anymore? What does the future look like to someone with Alzheimer’s disease?

You want an honest answer?

I DON’T KNOW HOW LONG I CAN KEEP THIS FIGHT UP.

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.

…like being buried alive.

………hugmamma.

 

 

 

 

how do you tell your children?…

That you have…ALZHEIMER’S???

As we usually do while driving around on errands, my husband and I listen to NPR News on the radio. In addition to the news, it offers regular anecdotal snippets of ordinary peoples’ lives.

The following hit home because my mom had Alzheimer’s for almost the entire decade prior to her death. It was rough-going for she and her caretakers, one of my older sister’s and her husband.

Hearing about the the disease from someone caught up in its web of deceit, might help us understand the victim’s traumatic journey into the unknown from which there is no return. Perhaps when we glimpse the unrelenting misery of someone losing his identity, built up over a lifetime, we can understand that the person we once knew is metamorphosing into a complete stranger. 

And yet, he is no stranger at all.

He is like a newborn having to begin again. Unlike a baby, however, he is fully grown making it difficult for us to embrace him as though cuddling a tiny human being.

Journeying with someone stricken with Alzheimer’s is like living in Purgatory…halfway between earth and Heaven. As such we can’t expect to be completely human, and we’re certainly not angels or saints. 

Alzheimer’s is…what it is…for both the victim and those suffering alongside him. No more…no less.

Here’s NPR’S broadcast…

ARUN RATH, HOST:

It’s ALL THINGS CONSIDERED from NPR News. I’m Arun Rath. Today we hear from a man who’s chronicling his own experience with Alzheimer’s disease. Greg O’Brien is a writer and journalist.

O’BRIEN: You ask me the question of who I am, there are days when I’m not quite sure. But in reality, my name is Greg O’Brien. I’m 64 years old. I’ve been married 34 years. We have three beautiful children. At age 59, I was diagnosed with early onset Alzheimer’s. The disease stole my maternal grandfather, my mother, and now it’s coming for me.

I was diagnosed in 2009. It was scary. I remember sitting in my neurologist’s office. He had all the tests results and the clinical tests that I failed and all that. And he’s sitting next to my wife. And he said that you have Alzheimer’s. The doctor looked at me, and he said, are you getting this? You have a battle on your hands. I’m talking to you – excuse me, this is hard to talk about -as if you’re terminal.

Now I have a strong faith, and I know I’m going to a better place, but I started thinking of my wife and kids. And I could feel water running down the side of my face, and they were my tears. How do you tell your kids that you got Alzheimer’s? It sucks. I had planned this family meeting so all the kids were home, and we were going to go out to dinner. I’m in the bathroom, you know, I felt a little bit like Luca Brasi in “The Godfather” practicing my speech, you know, on the day of your daughter’s wedding. And so I could hear, Daddy, where are you? So I came out and, you know, went over the fact that their great-grandfather, my grandfather had died of Alzheimer’s and my mother, which they knew, and now it’s come for me. And they were stunned. They didn’t quite know what to say. And Conor kind of cut through it, and he says, so, Dad, you’re losing your mind. And everyone laughed, and I laughed. And I said, you know what? That’s enough talk for today. Let’s go to dinner. And that’s what we did. And we started talking about the Boston Red Sox and the patriots and the Celtics. And I felt more comfortable in that.

So about a week later, we had a family outing in Coronado Island. And I had just basically assigned my son to be my guardian should something happen to Mary Catherine, and made him power of attorney. So I said we need to talk about this, and he didn’t want to. He wanted nothing to do with the discussion. So I said, OK, I’ll be right back. And I went inside, and I got 80 pages of medical notes that talked about my diagnosis. And I said, Brendan, you need to read it. I don’t want to read it, he said. So I started reading it. And he started yelling and screaming. I don’t know what words I can use here. He started saying bull [bleep], bull [bleep], bull [bleep]. And then he said, expletive, bull [bleep]. And I said, Brendan, you need to get this. He grabbed my medical records, tore them up and threw them off the balcony. And then turned to me and said, Dad, it’s bull [bleep] ’cause I know it’s true. Excuse me. He put his head in my chest. Here’s this guy now in his late 20s, and he cried like a little boy.

It’s difficult doing interviews like this. It’s like getting up for a big sporting event. You know, I say my mind is like my prized iPhone – still a very sophisticated device, but one with a short-term battery, one that breaks down easily, pocket dials and gets lost. So in writing and in doing an interview like this, it beats the crap out of me. But I’m feeling and doing it. I’m beating the crap out of Alzheimer’s. And 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. There are millions more out there suffering through the stages of early onset Alzheimer’s who are afraid to seek help; they’re afraid to talk to people. And if I can help give them that voice so maybe things get a little better for them, then that’s good.

RATH: Greg O’Brien is a writer on Cape Cod. His memoir is “On Pluto: Inside The Mind of Alzheimer’s.” We’ll be following Greg as he chronicles his experience with the disease. Next week, he tells us about how his life changed since his diagnosis five years ago.

O’BRIEN: 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.

RATH: That’s next week. And you can read more about Greg O’Brien at our website, npr.org.

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chilean miners…33 men

On NPR news this morning, there was a segment about the 33 Chilean miners who, last year, had been trapped underground. Their near death experience made them front page news worldwide, as their ordeal dragged on for an interminable amount of time. After their rescue, one of the reporters following the story continued to do so, keeping track of the miners in the aftermath. He’s since written the book, 33 Men. 33 Men Inside the Miraculous Survival and Dramatic Rescue of the Chilean MinersThe author is Jonathan Franklin.

Chile rescue

Image by thomaswanhoff via Flickr

According to the interview on NPR news, Franklin said the surviving miners went from celebrity headliners to normal Chileans living without running water. Most are unemployed, only a few have taken to other jobs such as truck drivers and vegetable stand vendors. Two men attempted to return to work in the mines. One lasted only minutes, having been so petrified he fled the mine almost immediately. The other viewed the mouth of the mine, tears welling in his eyes. When asked why he was so sad when he had escaped death and survived, the former miner proclaimed that he had been happy there…in the mine. A puzzling response, to be sure.

Franklin went on to explain that when the miners were first trapped, they bonded in their misery. The men became a team, working together to stay alive. However upon receiving assistance from the outside world, their cohesiveness dissipated. A TV sent down to them became the primary focus of some, taking them away from assigned tasks. Those men just wanted to watch TV all the time. IPhones that had also been distributed to entertain the miners, were returned by some who indicated that the recorded music wasn’t to their liking. I don’t even own an IPhone…not that I’m clamoring for one.

Fame, as we all know, is fleeting unless one forever chases it. Lottery winners are big news, quickly returning to the shadows from whence they came. Those who are able to maintain their former selves in spite of the moolah and the hooplah, fare better than those who are caught up in the moment, relinquishing themselves to all that fame and money can buy. What chance have these Chilean men, saved from death’s grasp, of surviving all the media hype that turned their world upside-down. Will they be rich and famous? Or will they return to poverty and obscurity? Only time will tell, it seems. For Hollywood has come-a-calling, and the red carpet will be rolled out, and money will be made…but will it be shared proportionately…between those who have…and those who, as yet, have not?

One person it seemed escaped the post traumatic effects of those rescued from the mine…a priest. I’m not sure why he was amongst the miners, but according to Franklin, the clergyman acted the leader while underground. Most likely as a result of his position and his spirituality, he escaped the psychological ailments that still bedevils the others. So while celebrity and financial gain are of no significance to the priest, who is once again leading a normal life, where will the miners who jump back onto the media’s bandwagon hoping to cash in…find themselves…

after their fleeting moment in the spotlight…is finally spent…and gone?………hugmamma.