Spirit in Action
Alzheimer’s from the Inside: Fear, Anger, Faith & Healing
[music] ♪ Let us sing this song for the healing of the world ♪ ♪ That we may hear as one ♪ ♪ With every voice of every song ♪ ♪ We will move this world along ♪ ♪ And our lives will feel the echo of our healing ♪ ♪ With every voice of every song ♪ Welcome to Spirit in Action. My name is Mark Helpes Me. Each week, I'll be bringing you stories of people living lives of fruitful service, of peace, community, compassion, creative action, and progressive efforts. I'll be tracing the spiritual roots that support and nourish them in their service. Hoping to inspire and encourage you to sink deep roots and produce sacred food in your own life. ♪ Let us sing this song for the dreaming of the world ♪ ♪ That we may dream as one ♪ ♪ With every voice of every song ♪ ♪ We will move this world along ♪ Today for Spirit in Action, we're going to be delving into Alzheimer's disease. How to live fruitfully with it, and what to do about it personally and as a nation. Our guest is writer, editor, investigative reporter, publisher, and president of a political and communication strategy company, Greg O'Brien. Greg's new book is "On Pluto, Inside the Mind of Alzheimer's." A disease which Greg has traveled with for several years now. With Greg, we have psychologist Molly Perdue, who uses her training and compassion to help people like Greg cope with early onset Alzheimer's. Greg O'Brien and Molly Perdue join me by phone from Cape Cod, Massachusetts. Greg, I'm so pleased to have you here today for Spirit in Action, and Molly, I'm so glad you could join us too. Thanks, Mark. Yeah, thank you very much, Mark. Appreciate that. I got your book "On Pluto, Inside the Mind of Alzheimer's," and it very much grabbed me the story of what it's like to live with the disease seen from the inside. I want to make clear who you are, Molly, versus you, Greg. Greg, you wrote the book, you've had a diagnosis of Alzheimer's for some time. Molly, would you explain your role working with Greg? Well, Greg considers me his counselor of sorts. I have a master's degree in counseling, and I've been working with families all over Cape Cod. They're dealing with Alzheimer's disease or some form of dementia, and I also run a support group for people that have early onset. So they're early in the disease progression, and they want to come together and find support from each other and find ways to continue living with the disease and trying to live as well as possible. Perhaps we'll start with you, Molly, since you're the actual technical person with respect to this disease. You mentioned you have groups with early onset. Could you explain about what the spectrum of Alzheimer's is? So Alzheimer's, it's staged. So people begin, and now they keep changing the classifications because they want to identify people earlier and earlier in this disease progression, because they're hopeful that they're able to help people find ways to live better while they are dealing with the disease. So you have what's now free clinical, which are people that are symptomatic maybe 10 years before they're starting to show symptoms, and research is just trying to create that category of person. And then as a person progresses, they move into what's called mild cognitive impairment, and this is where the person is experiencing some impairment in their daily life, but they're still capable of living and doing many things like they used to. They just need a little bit of support. And for people that have mild cognitive impairment, there's a certain percentage of people over half to 75% that will progress into some form of Alzheimer's. And so as someone gets an Alzheimer's diagnosis, then it is staged in many ways. There's many different stages, but usually mild, moderate, and then severe. So if that makes sense, you can see that the continuum is rather lengthy. The disease progression can last up to 20 years, so that's a very, very long disease progression for someone like Greg O'Brien's case, you know, he is trying to figure out how to live well with the disease. And that's something people are trying to understand how to do, because there's no real road map. And it's what makes Greg's book on Pluto so important, because he talks from the perspective of a person that is grappling with this disease every day of his life. And another thing that makes it interesting, Greg, is that your mother was diagnosed with Alzheimer's before, and you were caring for her. You were very much engaged with her progression of the disease before you got your own. How long did you live with her diagnosis of Alzheimer's? And when did that dovetail with when your diagnosis came in? Well, the best way to answer that is a little perspective. My maternal grandfather died of Alzheimer's. My mother died of Alzheimer's. I'm 64. At age 59, I was diagnosed after serious symptoms in terms of horrific, short-term memory, not recognizing people in familiar places, not recognizing familiar places. At times, seeing things that weren't there, a tremendous rage, a lot of the symptoms that my mother was going through. Then on top of that, I had a serious head injury that doctors say unmasked a disease in the making, very similar to pro football players and athletes who get hit in the head and often can, not in all cases, end up with dementia or Alzheimer's. Then I had the brain scan and the spec scan and the clinical test that confirmed it. And I, after that, had a gene test, and I carried the marker gene for Alzheimer's APOE4. And Molly, I don't know if you want to talk about APOE4 if you have any background on that, but that's a gene that doctors have identified as a marker for Alzheimer's. So the key about this is denial. There was denial in me. There was a denial in my mother. So often Alzheimer's, from my understanding, is it can start five, ten years before it's diagnosed. And it can take 20 years to take its course. It is, as it's been said, a death and slow motion, like having a sliver of your brain shaved every day. One of the purposes of my book, it's not a misery memoir. It's a book about living with Alzheimer's with faith, humor, and hope. Because there are a lot of people out there who are walking around with Alzheimer's far more, millions more, I suspect, than those diagnosed because this is a disease that's going to take out of the baby boom generation. They're afraid to talk about it. The symptoms are horrific. People have the stereotype of Alzheimer's as the final stage in the nursing home. And yes, that's a terrible stage where you don't know who you are and you're incontinent, but there are people like me walking around today who can still talk and we have to live. And we are incontinent at times. 60% at times of my short-term memory is gone in 30 seconds. I regularly don't recognize people, including my own wife after church the other day. When I was in a coffee shop writing and she came in, I don't often recognize where I am from their places. I see very scary things. The doctors call it misperceptions. The unpolite word is hallucination. The times I pick up a phone and I don't know how to dial. I don't remember. Or I pick up a lawn sprinkler and throw it against a tree in a million pieces because I can't remember how to use it. It's a horrible disease and it's very difficult to pinpoint when it starts. Again, my book, which is available now, it was just released in Bookstore soon, but available on Amazon on my website on Pluto.org. So Amazon on my website Pluto.org in Barnes and Noble.com. It's a book of strategies. It's a book of hope. It's a book of faith in living with Alzheimer's. The death part comes later. You got to be there with your mother as she was dealing with her Alzheimer's. How long was she in denial? How long did you care for her in the course of her disease? Well, we have a large Irish Catholic family. My parents, second generation and third generation, 48 branches of the family tree, 47 go back directly to Ireland. With the Irish denials like an island, just like Ireland, we love to live on it. So my mother had to be in denial because she had 10 kids in my dad. I was in denial because I saw the denial of my parents. I saw the taboo that everyone placed on Alzheimer's and I was afraid to talk about it. It wasn't until my mother. And so I, on Cape Cod, I became the family caregiver and my mom was taking care of my dad. He had prostate cancer, which I also have. And he had circulation bypass surgery and he was in a wheelchair. She just kept saying, "I can't give up. I can't give up. I can't give up." And she fought it and she taught me how to live with Alzheimer's. I don't know if that answers your question along the way. I actually forgot your question. So it was a good question, but I forgot. I have to tell you that I forgot. How long was she in denial before? I mean, you saw symptoms. You saw forgetfulness. And you saw it in yourself as well before you were diagnosed. I would say my mom were on a similar path. She fought it out for 10 years. It got worse and worse. We knew what was happening. And we finally got a diagnosis from a doctor. But still she fought it. My father was reluctant to accept it. I remember a time, which I write about it in my book, which is, as I said before, on Amazon and on Pluto.org, my website, where my mom was telling me, "Greg, I don't know how much longer I could hold on." And I believe in Alzheimer's, you can fight it off. Not everyone can, but in places you can and, again, in faith, you learn hope. And I said, "Mom, we've got your back." An hour later, I went by the house and I showed her a picture of all the kids. She couldn't recognize and name one of them. And I thought of that line from Chief Brody and Jaws when they saw them. And then the shark and Brody turns to everyone and says, "We're going to need a bigger boat." And an hour later, my dad is rest of the hospital with internal bleeding. My mom is with him. I get the call from the ambulance. You've got to get here. I go down and my mom says, "I don't know how much longer I can do this." And she sees my dad. He was internally bleeding on the floor on his wheelchair. And I said, "Mom, that she was horrified." And I could say at that point, I just saw Kurt go down in front of her eyes. And I said, "Mom, I'm going to go get the doctor." She said, "Greg, would you take over?" And I said, "Yeah, Mom, I'm going to go get the doctor." And this is a moment that's burned in my mind. It's a hard moment to discuss, but she reached for my elbow. She was behind me and she squeezed it. And she said very slowly and very loudly, "No, Greg, would you take over?" And it was the passing of a baton. It looked like I was watching someone who had been holding on to a dock on an outgoing tide let go. And within 15 seconds, she had curled up in my dad's bed like a kitten. And my dad sat there in the wheelchair, bleeding on the floor. And I said to myself, "Who are the parents now?" And within the next year, my mother was dead. That's so hard to live through and even to hear because we all know that we're vulnerable to that. There's one thing that you mentioned earlier, Greg, that I wanted to come back to because you kind of passed it glancingly in the book. Your symptoms, I guess, were unmasked early because of accident. You were biking without a bike helmet, had a head injury. I had the symptoms before that and they worsened at that point with the injury. So a year or so before that, I started the symptoms and then they worsened after that. And so you got the diagnosis earlier because of that bike accident. And in the book, you kind of glancingly mentioned it's like I'm stupidly biking without a helmet. Now I have to admit, I'm 60, Greg, and I have never used a bike helmet. As a matter of fact, later today, my wife and I will be going out on our tandem. And I've never had a bike helmet and I think it's maybe time for you to convince me to do something smarter. So go ahead. Give it your best shot. Convince me to wear a bike helmet. All right. I'll let you use the word for you, but I was a dumbass for not using a bike helmet. And you hit your head and Molly could talk about that. A lot of bad things can happen. Yeah. And I think, Mark, I want to just mention about the denial and the lack of diagnosis around this illness is that people are frightened to death. So what happens is you don't wear the bike helmet. You start to notice cognitive changes and you're too frightened because of the stigma and the fear to have that conversation with your doctor. And so people live in isolation with this fear that something is happening to them and they don't get the help that they need to get. And this is a real travesty. This is where 50% of people that are dealing with some type of dementia or mild cognitive impairment have not had that conversation with their doctor. And we can extrapolate that the reason for that is fear. I think that starting to have these conversations and you being so generous to have Greg and I on your show and to allow people to know where to get his book from Amazon and to contact him on on Pluto.org is really important because what I experience as a counselor are talking to people like Greg that haven't yet taken that first step. That are noticing these cognitive changes and they don't want to talk to their doctor for fear. He's going to say or she's going to say you may have some type of neurological disease. And the problem with that, just as if getting into a bike accident and realizing changes is that there are reversible forms of dementia that you could talk to your doctor about that could be remedied. For example, there's a lot of memory loss that's associated with depression. There are people that have thyroid abnormalities that when they're put on the proper thyroid medication, they find that their memory does a little better. So there are things that happen to people that if you don't find the courage to have that initial conversation so that you can talk to your doctor about is this an accelerated form of memory loss? Is there an organic reason for what I'm experiencing? Or could this be something else? Then you suffer in isolation. And I don't think that's something that we want to see happen to anybody in our community. It's one of the reasons that I'm doing this work because of what I experienced with my own mother. We're talking about maternal ties to this disease and I felt that she needed some support so that she could continue to enjoy her life even though she had cognitive impairment and was diagnosed eventually with Alzheimer's. So back to the bike helmet, it's important that we do what we can and we know that there are things lifestyle changes that are important. We know that what's good for your heart is good for your brain. So eating well, exercising we know is critically important. And Greg could talk about the exercise because we live in the same town and I would see him at the gym. And he used to tell me that he would go to the gym and run for miles to get his brain moving and then he'd go home and ride. So I don't know, Greg, if you want to talk a little about exercise. Yeah, I hope you first of all, Mark, wear your helmet. We live on Cape Cod and you've probably heard about all the sharks here. So that would be akin to going out of the water and putting chum all over you with the shark. Give me your hand. Please wear your helmet and anyone who's listening, don't be a dumbass like me. Now what you asked me to do, now I forgot what I was supposed to. I shouldn't be a wise guy because I forgot what I was supposed to do. And that's part of, by the way, my humor is an Irishman. I think that exercise and exercise in the brain is essential. My doctors have told me that. The end of the day, and I'll have Molly talk about it in more detail. When the lights go dim, it has an impact on the brain. And so I work out, try to work out at least an hour, hour and a half every day to restart my brain and then I go right for an hour or an hour and a half. And it's akin here. We live back on Cape Cod and it gets pretty cold here in the wintertime. And it's like trying to start a chainsaw that's been sitting on your deck overnight. You've got to rip at it. But I've described, in my book, on Pluto, I've described Alzheimer's. And I try to do it in a way that the layman can understand, written as a reporter embedded inside the mind of Alzheimer's. Describe it as, think of yourself as sitting in your living room reading a good book at night and the lights start to blink because the plug is loose. So you get up and you push the plug back in and then it blinks again. And then you push the plug back in. And it's very annoying and it blinks again and you start to get a little mad. And then the plug is so loose that it falls out. And then you put the plug back in. Pretty soon the plug doesn't go back in the socket. It's out forever and the lights go dark. And maybe Molly can talk a little bit about sundowning. One of the benefits of exercise is not only that it helps kind of restart the brain, which is what Greg is talking about, but when they did studies they found that it also helps with mood regulation. Some of the studies that came out of the NIH around exercise, they were able to test people that were in a group that were exercising and test them afterwards. And they saw that their test scores seemed to remain stable. So their cognitive scores remained stable, but the other finding was that they actually felt better from the exercise. And we don't really talk about the behavioral changes, the personality and mood swings that can come from these dimensions, but it's a part of what Greg has to deal with probably every day of his life. And the exercise can help mediate that. And the sundowning is something that happens as the sun goes down, people tend to have more confusion, more difficulty, and need a little more support to get through that time of day. It sounds like a great strategy. And this is something that we talk about in my support group with people that have early onset, is trying to find strategies so that every day of their life they can do a little better. And they can find some way to combat the symptoms of these diseases so that they can continue to live. You know, as Greg talks about in his book that's available on Amazon or on Tudo.org is that you want to help people figure out how to live with Alzheimer's. You know, the dying, as he says, comes later. I want to remind folks that you're listening to spirit and action. My guest today is Greg O'Brien. He's author of "On Tudo, Inside the Mind of Alzheimer's." Accompanying him is Molly Perdue. She has masters in counseling and PhD in social sciences, and she works with groups of people with Alzheimer's early onset. She's here to join us because Greg does have short-term memory loss. It's part of the progression of his disease being inside the mind of Alzheimer's. One of the things I wanted to make clear about, we didn't mention this up front, the book is called "On Pluto, Inside the Mind of Alzheimer's." Why on Pluto? On Pluto is, first of all, I've been a newspaper reporter magazine writer for 40 years in different places in the country. And my book is written from a perspective of a reporter, investigative reporter embedded inside the mind of Alzheimer's, in this case, chronicling my own progression, which I took notes for many years with the help of three New York Times best-selling writers, Chief of All, Lisa Janova, who wrote the Alzheimer's best-selling novel, still allows soon to be a movie, and I would urge everyone to go see this movie, as well as another movie, by the way, about Glen Campbell that has been produced by two Hollywood producers, Stacey Keas and James Albert, Glen Campbell, I'll be me. And the more we know about Alzheimer's, the more we'll be able to understand it and to fight it. The title on Pluto came from when I was an investigative reporter, and I was a young man at the Arizona Republic, and I was writing about organized crime in the mafia. I used to tell friends of mine when we went off the record, not friends, but sources. We're going off the record, and I'm going to take you out to Pluto, a place where no one can hear what is said and everything stays there. And it was a common phrase for me and just something I connected with. Then later in life, when I got together with my buddies in social situations, and we talked about all the unmentionables of life, which we all do, then we didn't want anyone to know what we were saying, my buddies would say, Greg, are you taking us back out to Pluto? And I said, you're darn right, I am. And that became a mantra with my buddies. And Alzheimer's, as I described before about the plug analogy, Alzheimer's is a loose plug in a socket that keeps falling out when the synapse, the electrical charge, doesn't happen. And there's a surge to drift out because you're fighting, and you can't fight anymore. And you have to give up and go out to a place that's called the Alzheimer's days or haze, and maybe Molly could talk about that a little bit, where you have to give up for a little bit just to kind of catch yourself, or you have no control over it. And so I had to invent a place that I felt safe going to, so I called it Pluto. And, you know, like my mother, there'll be a day I don't return from Pluto, and maybe Molly might want to add to that. I think Greg O'Brien is so candid and so honest in his telling of his experience. It helps people understand what a person is going through. And because he was a journalist, and is a journalist, he's able to write from this place as an observer. Kind of exploring what an experience of Alzheimer's is like. It's fascinating, and it's incredible that we have this document that documents what a person is going through through this disease. I have not seen anything like it anywhere else. So it's fascinating, and it's insightful, and it's helpful because what I say about these diseases is that although it affects the individual, it also affects the family. And by extension, it affects the entire community. And so as in, you know, raising children, we say it takes a village, and the reality is it really is going to take all of us to get involved and to figure out what we can do to help families through this, and to help individuals through this, and to find a path. The numbers are rising, and they're talking about, you know, right now it's 5.4 million people in the U.S., and we're talking about 16 million in 2050. So, you know, exponentially that's a very, very big rise in numbers, and we have to figure out, you know, as a community how we're going to support these families. It's a scary disease. I learned a lot about it, Greg, from your book, just the inside experience of it. Of course, I knew that there was short term memory loss. I'd heard that about Alzheimer's, and then longer term, and not recognizing people. I'd heard that. I'd heard about the mood swings and the anger that happens. But you mentioned earlier in the interview too, the profane word for it is hallucinations, and you don't perceive what's there in the normal way. There are two stories that you told in the book that were particularly gripping for me. One is you're going to join some friends in a bar restaurant area, and you see them in a glass through a window, but you can't get over to them. And then the other one was you're flying on a plane with your daughter. Could you mention those stories? Because I think they really increased my understanding of what Alzheimer's dislike from the inside. Yes, I was with some clients on Martha's Vineyard in addition to my writing. I'm a political and communication consultant. And, you know, God bless my friends and clients. They know, and I would say this is encouragement to others who are concerned about speaking out. I've had family, colleagues, and friends come and support me, and I said, "Look, when I can't do it anymore, you'll know. But there are things I can't do now on the left side, but can't we celebrate what I can do right?" And they've stood behind me. So it was this place where we went to a Martha's Vineyard for dinner after this meeting. And, you know, I tell people, "I'm not stupid. I just have a disease." And the brain gets sapped down. And I say, "My brain is like an iPhone. It's got a short-term battery." You know, an interview like this, God bless Molly for being with me because there's no freaking way I could do this for an hour. And thank you for understanding that. And so I say, "My brain is like an iPhone. It's still a sophisticated device, but it pocket dials. It breaks down. It has a short battery, and it gets lost all the time." So I went into this restaurant by Martha's Vineyard, and I'm looking through, you know, there were two rooms there. There was the bar area, and then there was an area where people were sitting down, and there were some glass separating it. And so I looked in and I saw my colleagues, and I was waving at them, and so they waved back. And then I waved again, and they waved back. And then, you know, I kind of shrugged like, "I can't figure out how to get in there." Then they started laughing, so I figured there was a way to get in there. And then in my mind told me that if I go in the men's room, there's going to be a door from there into this other room. I don't know why my mind would tell me that, but it did. And then I came back out, and I looked at him again, and I started talking through the window, and then I tried this other exit. What had happened was I was playing his day, and I would have known this a few years ago. This is after meeting. No one's drinking here, so just for the record. But I was staring at a mirror, and they were behind me. And what was so cool about it, they knew that my brain was shutting down. They've always had a sense of humor. And they knew that I would think it's a funny story, and then they came up and they hugged me. But it was real. In my brain, my perception told me that there were two rooms there, and I was convinced of that. That story is pretty funny, but the one about the plane is a bit scary. Well, yeah, I was out in San Francisco with my daughter on a book-related event, and I don't travel alone anymore, and she was just getting engaged, and it was kind of that last father-daughter event, which is beautiful out in San Francisco and Berkeley. So we had a wonderful time together, and did some book promotion. On the way back, flying home, I got disorientated, and I was going to say the nurses, but that's the wrong word. The flight attendants put me in the chair, go figure, but how do they know, right next to the emergency exit? And my daughter, she didn't think anything of it. She just said, "Okay." So we're talking, and she kind of fell asleep, and I had to go to the bathroom, and first of all, I should tell you, my dad was a director of pensions for Pan American Airlines. I had a free pass. I flown all over the world as a kid on airlines. Okay, so this is not my first rodeo, as they say. So something in my brain said that the door to the bathroom was to the right of where I was sitting, and I got up and I put my hand on the emergency exit to pop it open. And my daughter was awoken when I said, "She screamed that you could hear from the front road in the back." All of a sudden, everyone, and I had to sit down and everyone realized I had a problem, which is Alzheimer's. So what I said is because it's the Irish anyway, I told my daughter because she said, "Daddy, how could you know?" And I said, "That would have been a hell of an ending to the trip, huh?" I said, "I would have taken out everyone on the plane. It would have been a tough story if you would have explained to mom that dad's flying somewhere over a Cleveland right now." I had a blazer glory, I guess. Something in my brain said, and that's what, and maybe Molly can shed some light on that, said, "That's the door to the bathroom, pal, just like my brain told me that those people were sitting in a room on the other side of that mirror." And I thought it was a window, and I know the difference between a window and a mirror at 64, but my brain said, "Nope, that's a window." And Mark, this is a confounding thing about these diseases, is that you can have a conversation with Greg like you're having today, and yet he can have a moment where he can't recognize the mirror or the emergency handle on an airplane. And this is why it's so difficult for families to understand what they need to do to care for their loved one, and it's why it's so difficult for the community to figure out what do we do to help people live with this disease. If we lived in Europe, they put billions of dollars into their educational program, so they can make sure that people understand the disease, people understand the symptomology, and so people are educated so you can have more dementia-friendly communities. And we haven't figured that piece out yet. Hopefully we will soon, so that we can have people educated about the symptoms. We can have people understanding that everybody, even early in the disease, will have moments, but it doesn't mean that they have lost their intelligence. It doesn't mean that they can't function at other points in time. It could be a minute. It could be a bad day. Sometimes people function better at different weeks. The connections can be made, and people can seem to be alright, and then there's a moment where the connection doesn't happen in the brain. And they experience some difficulty, such as what Greg talks about. It's amazing to hear these stories and know that somewhere, at some point in this progression, 5.4 million people have been going through this. And yet, there's no accounting of what all of those stories are about because of the denial and the fact that we have not yet decided to grapple with these issues and find a way to help people live with the disease. We'll talk more about that in a moment. I want to remind you, you're listening to Spirit in Action, which is a Northern Spirit radio production on the web at northernspiritradio.org. On that site, you'll find more than nine years of our programs for free listening and download. You'll find links to our guests, so you'll find links to Greg O'Brien and onpluto.org. You'll also find comments, and we'd like you to leave a comment when you visit. Let us know what you're thinking. There's a place to donate, and we fund this program through your donations. Please visit northernspiritradio.org and contribute. But even more so, I want you to support your local community radio station. They provide an invaluable slice of music and news that you get nowhere else on the radio dial. So please support first your local community radio station. We have Greg O'Brien with us today. He's author of a new book on Pluto Inside the Mind of Alzheimer's, and accompanying him is Molly Perdue, PhD in Social Sciences, and she works with people who have Alzheimer's. I want to go to another topic right away. One of the things that strikes me so significant about Alzheimer's, both Greg and Molly, is that I think in the U.S. or particular for many of us, so much of our identity is wrapped up in what we think and how we think and that we think. I think for maybe for some athletes, it's more wrapped up in their sense of their physical ability, their ability to perform physically, and as our bodies decay, we lose that sense of ourselves. As our minds decay, it goes right to our core, and Greg, you've been a heavy-duty thinker. I get the sense of you from on Pluto that you value your incisive and discerning and organized mind so much that Alzheimer's for you has to be a threat right to your core, and yet you write so vulnerably about it. How does that affect you, the fact that it's your mind that's going, as opposed to your prostate? First of all, when you were talking about others, you hit out a good topic, and I'll answer the question this way. All of us like to see ourselves as the resume or the title on the business card or the stock portfolio. As a writer, I've made a good living, but my focus has always been the mind in writing, and that's always been my identity, and when you lose that, when you lose your health, or you lose your stock portfolio, or you lose a child or a spouse, it brings you right down to who are you. This is not just a book about Alzheimer's. This is a window into the baby boom generation. It's not a book about me and my family. I'm the window into that. Sure, my friends care about me, but anyone listening needs to care more about them. This is a book about you and your family and your grandkids, and anyone is listening. Alzheimer's is a perfect example of when you get strip naked, and I've had to look at myself in the mirror, and there were things that I didn't like. I said before, I have a strong faith, but one of the world's greatest sinners isn't perfect as anyone else. The blessing for me of Alzheimer's in my relationship with the Lord is now I have an opportunity to see myself naked, to see into my heart and my soul, and an opportunity to try to change some things, and that's a blessing, and it's really at the core of who we are. I don't want to proselytize here, but I believe in heaven, and when we go there, we go there naked. You don't get a bigger mansion in heaven because you had a big mansion on Cape Cod. It's about what your heart is about. In Alzheimer's, I've learned I don't trust my brain anymore. I used to be my best friend, and now I see little chance of reconciliation, but I trust my heart. I've talked to Molly about this, and I'm curious what she thinks. I've learned to speak through my heart and soul, and it's an unfiltered process. Obviously, sometimes you say things that maybe are too honest or too candid, but speaking from the heart and writing from the heart is a lot easier to process it. You come in connection, and I know that, again, I said before, the different people with different spiritual values, and I respect that, but it allows you to connect with God or connect with the universe, or whatever you want to define, and all a powerful spiritual being. But there's something a heck of a lot bigger out there than we are. One of the things I want to mention is that I'm doing this work with many, many families, and many tend to be elderly. And one of the things we often discuss is that, okay, the body ages, but the spirit seems to be young, and that's something that many people tell me. That they don't feel that, from a spiritual perspective, that they are no longer useful or able, or they have lost the spiritual abilities that they've always had, in that sense, that youthfulness remains. And on that note, when we talk about Alzheimer's from an emotional perspective, from how someone feels that's going through this disease, and Greg talks about this heart connection a lot, and I've heard this from many people that attend my group, is that the emotive center remains intact. So although people that are progressing may not know the proper name of someone, may not know exactly who that person is that has come into their room if they were asked, who am I? But they know that that person means them well. They know that that person treats them with kindness. They know that that person has compassion, and they know that there's a familiarity with that human being that transcends any loss of memory. And we don't really talk about that much, and I'm really happy, Mark, that we're able to mention that on your radio show, because it is important. There is a spiritual aspect to this disease that allows people to touch this compassionate place that they may not have otherwise. And maybe that's some strange silver lining that we can associate with some of these progressions. That it challenges all of us to find that place of compassion in ourselves, to find that place of communication that is no longer about that sense of identity of your stock portfolio or what you've achieved. But it's just about being in the present with another person and being kind in that moment. The other thing I would just add is that no one should go through this disease alone. People that have questions need to reach out and talk to their doctor or reach out to the Alzheimer's organization that is in their town or their city so that they can get more information. And if a family is suffering from this disease, someone in their family, they need to reach out and get some education and get some dementia training. So they know how to help someone through this progression. So all of that is available just about anywhere through local organizations. That's the way we start to move people towards action. You know, we say, okay, you know, contact us, get ahold of someone, have this discussion. Don't just listen to this show, buy the book, talk to somebody. And if people can do that, they can start to alleviate some of their fear. And I think we're going to be able to deal with some of the denial that prevents people from being able to get connected to the help they need. I'm really glad that you brought this up, Greg, and, you know, that you elaborate on this, Molly. My wife has told me for years that one of the things she wants to -- she's a psychotherapist, as well as a yoga teacher. But one of the things she's aware of is that she wants to heal her wounds, the psychic damage that we all have. And maybe it's related to the sin stuff that you're talking about, Greg. She wants to get that healed before she reaches dementia. Because when you reach dementia, unfiltered stuff comes out. So she says it's really important to get that all cleared up before I reach the part where my book gets thrown wide open. Greg, you didn't get to clear up the entire book before it got thrown wide open. But you seem to be grateful about that as opposed to horrified at what comes out. Well, you know, I think your wife is a wise woman, and that's what this book is about, getting people to realize that the process of Alzheimer's, it's the long kiss goodbye. Okay. It's the death and slow motion. Please, my urge to anyone who's listening, don't get concerned about Alzheimer's or interested in finding a cure when somebody's 90 years old in the nursing home. That person who's 90 years old in the nursing home has had horrific moments of symptoms for 20 years. Allow these people in this country to speak out so they might have an opportunity while they can to look into their hearts to make changes before they lose their total sense of identity. But I believe in Alzheimer's and Molly touched on it. The heart, as I believe it is with autism and other places, is alive and the soul is alive. And again, I'm not trying to walk people over the head, but I believe that's really who we are. I'm not the guy with the nice shirt on or whatever, or someone else is not the person with the big bank account. It's who they are in their heart. And my mother, if I could just tell a brief story right before she died, I was called to the nursing home. And I was sad to stay in my life on how to put her in a nursing home, and she was three miles away. And the nurse called me and said, "Your mother's very upset. You need to come down." I came down and she was asleep, and I woke her up. It was about 9.30 at night. I said, "Mom, I'm sorry I woke you up," and her little eyes popped open. And she said, "No, Greg, I'm glad you're here." And there was a continent so that she couldn't say my name the day before. And I realized, "Well, we're in the final moment here." And I had put a photo of her father, George Brown, who's called Daddy George. She died at Baltimore Thomas at the foot of the bed. And I don't care what anyone said, and maybe I was wrong, but I felt my grandfather, his spirit, was in the room that night. And I knew we were on a journey. So I held my mom's hand as she laid in bed. I pulled my chair next to the bed. And again, she talked, and she was talking from her heart mark, not her head. And then her little eyes fell asleep. I got up and I kissed her on the forehead. And her eyes popped wide open, and she said, "Clear the day. Greg, where are you gone?" And one of the most dramatic moments in my life, I realized the moment was at hand. And I grabbed her little hand, and I said, "Mom, I'm not going anywhere. We're riding this one out together." I stayed there until she fell asleep. I kissed her on her forehead, and she never opened her eyes again. Wow, that's some powerful stuff. And of course, you've got people traveling with you. You've got your three children, and you've got Mary Catherine with you. And they're riding this journey with you. And it's been great to read in the book. And again, the book is On Pluto Inside the Mind of Alzheimer's by Greg O'Brien. In the book, you talk about how you come out, I guess, to your kids, to your wife, to your business associates. The vulnerability with which you have to do that, the openness, it's one of those embarrassing things no one wants to admit. I forget, I don't recognize you. And yet, somehow you find the strength to do that. Is there something in your personal faith, or is this just a power of mind thing? What enables you to be vulnerable when it's so embarrassing, so hard for us in our society? You know, on the power of mind, I know there's been a lot written, and I think it's good. And so I don't dispute any of that, because there's something real to that, okay? But I would be remiss in not answering your question if I said that power of my mind is the Lord. That's just what I believe. When I got this diagnosis, I had, I don't know if I could say this myself, I had the WTF discussion with God. And I felt, and I believe if you listen to the Lord or Supreme Being, however you want to define it, you get some answers. And I heard, Greg, there's a, again, we're comfortable in our worlds. My world is a Christian, is the Bible, and it's a Catholic, and a developing Christian. And I wish I knew the passage, but I don't. But there's something in Corinthians, which my heart, not my mind, was drawn to. It said, "Put on the mind of Christ." And I heard, "Greg, your mind will atrophy, but my mind won't." And we're going to do some things now, and when we're done, you're done. There was a time when I was in my office, and I was writing, and my brain shut down. And I went into tremendous rage, and I started, which I won't repeat now, using four letter words to God. You don't care, blah, blah, blah. What about me, blah, blah? I'm trying to do the best I can, blah, blah, blah, just screaming. And then I realized I had an appointment, and I went out to my yellow Jeep, and the back tire was flat as a pancake. I wrote about this in my book. Again, expletors flying against God, talking about blasphemous things. You know, I should have been blowing up the Pluto for what I said, but God's got big shoulders. And I lived down to the booster mobile station with the flat tire. I couldn't even take it off, because I didn't know how to. And I saw the attendant, and the attendant was a friend of my son, and he said, "Mr. O'Brien, I'll take it." And I started screaming at expletors again, and then he came back to me and he said, "I found the culprit." And I said, "Okay, fine, just please fix the tire and throw the nail away." And he goes, "No, Mr. O'Brien, you need to see this." And I said, "Okay, show me." I got to tell you, and I have taken this on the road, and many of my friends have seen this. He showed me, in the palm of my hand, a piece of bent scrap metal that had been shaped into a perfect cross. I started weeping, and I fell to my heart till we talked now. And from that moment, and I don't care, and people, and I respect that, they can have their own points of view. So I don't, you know, they can take this and say whatever they want, and I will totally respect them for that. But in my heart, that's not coincidence. I held that, and I never looked back again on my disease from that point. Wow, that's powerful. And you will read that in "On Pluto, Inside the Mind of Alzheimer's" by Greg O'Brien, and many more stories. There's a whole lot in there, and I want you to share one more. I don't know if this is a promise of Alzheimer's to come or whatever, but your first experience serving mass as an altar boy. And by the way, since I was raised Catholic, and when I was in fifth grade, I started altar boy classes myself, but then we moved, and so I never finished. So I never actually got to serve mass, as you did. Your first experience, though, is wonderfully, horrifyingly delightful. You want to tell about that, Greg? When you become an altar boy, and, you know, I went to a Catholic grammar school, and four years of old boys, Catholic High School, and Archbishop Stephanie High School of White Plains, New York. And then I went to two years of Fairfield University at Jesuit School, and I transferred the University of Arizona, and I saw women, really, for the first time, and I was like, "Hermi in the summer of '42." So that took me a while to understand myself down. So they have, when you're not a full-fledged altar boy, you kind of serve on the side, and the main altar boys serve, and one of them didn't show up, and this guy said, "Well, Greg, you can, you can do it." I didn't, you know, it's like my filter, and I kept saying, "Well, I was the little engine that could, you know, I could do it, I could do it." So, there's a – at Capix would know this or people go to church might – you know, the author boys move around and they do things and they genuflect and I would just follow with him. And he needed to be on the right side because that's the side where you ring the bells when they hold the host up after the consecration and any Protestant denominations and they know how that goes and sometimes they don't ring bells when the Capix church they ring bells. Everybody was about senior who was just – actually was named a Brian who was this real tough ex-marine. So, this guy Jackie and I were doing stuff and he had come to the middle of the altar and you genuflect and you move and I'm on the left. Something went horribly wrong and we genuflected and I ended up on the right next to the bells. And the look on Jackie's face was like I had just burned down a common full of nuns. He was scared. And he's like – and my mom is – you know, my hero, you know, she's a woman with all – she didn't have it then what she probably did but she's in the third row and she's all nervous because Jackie's hand signaling made about what to do. So, the priest in the most dramatic part of the mass after the consecration of the host, the priest holds the host up and that's – you're supposed to ring the bells three times and he holds it up, watching you, Brian, and nothing happens and I panic. I have my hand on the bell and I can't ring it and Jackie is monitoring and my mother is almost crying. Everyone in the church is realizing I'm not supposed to be in this position and they're watching. And he goes ring the bell and I hit my hand froze and he said ring the bell. Now people in the first six rows are starting to laugh and then the third time he goes ring the bell. Now you could hear throughout the whole church, the whole church is laughing. My mother is crying and finally he yelled out ring the damn bell and I started ringing this thing for like 20 minutes and there wasn't a dry eye in the church and so, you know, maybe Alzheimer's goes back a long time. You know, Greg is an exceptional human being. I would, you know, hope that everybody would pick up his book and read this because it's just an amazing insight into what he experienced and by extension what other people may be experiencing in the future when they are symptomatic. It's available on Amazon, just highly recommend it for anyone, clinicians, people that are concerned about their own cognition, people that just want to know, you know, what is this like. I mean, I think it's a book that is so well written it would appeal to just about anyone. And in it we can also learn there's resources in the back of the book, websites for more information or what you can do to support it. There's research going on, there's medication, there's way we support each other through our diseases. All of that is available. Again, the book on Pluto inside the mind of Alzheimer's website on Pluto.org or follow the link from Nordenspiritradio.org. Greg O'Brien's the author and accompanying him has been Molly Perdue. Thank you so much, both of you. Thank you, Greg, for writing the book, for being vulnerable, for helping us look nakedly at the progression of this disease, both in your mother and in yourself, and what we can do to cope with it decently, and particularly that piece of faith strikes me as very important. And thank you, Molly, for supporting Greg and so many other people. And thank you both for joining me today for spirit and action. God bless you. Thanks, Mark. See you. Five years into his diagnosis with Alzheimer's, Greg O'Brien is still churning out the good stuff, and you can find Greg's writing at his Huffington Post blog and in psychology today and plenty of other places. Find the links on Nordenspiritradio.org, as well as a link to the following clip from YouTube of a mother and daughter lying side by side in a bed, and the mother is well into Alzheimer's. I think this clip wraps up a lot of the fears, but also hopes of walking with someone who has the disease. We'll see you next week for spirit and action, but we'll leave you today with this heart open exchange between an Alzheimer's patient and her daughter. Do you know you're my mama? Uh-huh. You do? Uh-huh. A while ago, you said you didn't know you're my mama. Well, you act like my mama. I act like your mama. Mm-hmm. You know what I'm saying? You're my mama. I'm your mama. Yeah. All right. I'll be your mama. But I would lay here with just anybody. No. I think you want to have to love them if they want to. Yeah, you do have to love them to lay down with them like this. Yeah. And I love you, mama. I love you. But do you know who I am though? Uh-huh. Uh, Kelly. Yes, mama. Yes, I am Kelly. Uh-huh. Well, I love Kelly. And didn't I name you Kelly? Yes, you did. Well, I love you, Kelly. I love you, mama. I thought you -- a while ago, you didn't know who I was. I know it well. It was something because when I have some fears, I get here, and I'm thinking, "My lord, what am I thinking about?" You are. Yeah. What are you thinking about right now? Well, I'm loving you. I'm loving you too, mama. Oh, we're about to do the same thing. Yeah, we are. Oh, isn't it wonderful? Yes, it is. The theme music for this program is "Turning of the World" performed by Sarah Thompson. This spirit-in-action program is an effort of Northern spirit radio. You can listen to our programs and find links and information about us and our guests on our website, northernspiritradio.org. Thank you for listening. I am your host, Mark Helpsmeet, and I welcome your comments and stories of those leading lives of spiritual fruit. May you find deep roots to support you and grow steadily toward the light. This is spirit-in-action. With every voice, with every song, we will move this world along. With every voice, with every song, we will move this world along. And our lives will feel the echo of our healing. (upbeat music)
Investigative reporter Greg O'Brien shares the inside story of coping with Alzheimer's Disease, an experience that mixes faith and fury.