LISTEN TO EP.89

New, Eye-Opening Film on Alzheimer’s Gives Hope and Encouragement to Families

With over six million people in the US diagnosed with Alzheimer’s/Dementia, most of us have someone in our life that has struggled with this disease. Greg O’Brien, award-winning journalist, and bestselling author speaks with Scott Young about his ongoing battle with Alzheimer’s and how his faith, hope, and humor are helping him to weather the storms of the disease. Based on his life, the documentary “Have You Heard About Greg?” pulls back the curtain and puts a human face on an often silenced and dreaded disease, and challenges you to push aside the stigma of Alzheimer’s, and get the conversation started with the family members, friends, and caregivers who are all impacted.

Intro

Welcome to the Influencers Podcast. I’m Scott Young cohost along with Dave Donaldson. Dave is out on assignment, not in the studio today, and we will carry on in his absence. We’re here to see the influence of your life grow to make your world a better world and to make the world a better world.

I’ve got one question for you today, “Have you heard about Greg?” Greg O’Brien is an investigative reporter. He’s written for national publications, like the Associated Press, Time Magazine, USA Today, the Washington Post. He’s written a fascinating book that’s been turned into a movie. The book is called “On Pluto, Inside the Mind of Alzheimer’s”, and the documentary movie that’s coming out, “Have you heard about Greg” a journey through Alzheimer’s with faith hope and humor, and Greg, I want to thank you for joining us. You really help us. You help us to not turn away from Alzheimer’s, but you help us to have a conversation about this very important subject. 6 million Americans now projected in 2015 to go to 13 million Americans. Your story is fascinating. In your fifties, they told you that you had Alzheimer’s. How did you respond when they gave you that news, my friend?

Well, first of all, it’s an honor to be on your show. Just for background, I lost my maternal grandfather, my mother, and paternal uncle to Alzheimer’s and before my father’s death, he too was diagnosed with dementia. I was the caregiver for both and one in 10 kids. We were raised outside Manhattan, New York, but my parents were retired on Cape Cod and I was living there and was their caregiver, was there at their death death beds, which was a sad time to see. And I noticed over time that I started the symptoms and I had two serious head traumas that doctors had said unleashed a monster. And and I was afraid. And part of this is denial. When the mind doesn’t work we want to be in denial on it. There’s a chapter in my book, a quote from Mark Twain that says, “Denial, ain’t just a river in Egypt”. And I had the brain scans, spec scans, clinical tests also the Alzheimer’s gene test, which revealed I had a PE four gene. And I remember sitting in the neurologist office outside of Boston and he delivered the diagnosis. I was 59; I’m 72. Now Alzheimer’s is a disease that can take 20 to 25 years to run its course and said that I was a trademark case you know, in terms of my diagnosis. And I remember sitting in the doctor’s office next to my wife, Mary Catherine, and I could feel the tears coming down the side of my face. And the only thing I could think to say was, “What about the kids?”

FAITH, HOPE, HUMOR

And Alzheimer’s form of dementia is about the kids. Because if we can’t find ways to beat this demon back, it’s not only going to take out the baby boom generation like me, it’s going to take out our children. And you have to in life, walk in faith, hope and humor. I don’t know how and I’m most imperfect guy in the world, a typical Irishman. And I always joke that I’ve committed every sin a man can commit, but murder and adultery, and I’ve been tested in both. But I know my God. And I can’t live my life without my faith and hope. And the humor part comes from maybe being Irish.

What Alzheimer’s Feels Like

Well, every good Irishman has a good sense of humor. How does one have humor in the midst of this horrendous? I listened to somebody talk about you. And they said Alzheimer’s is like a silent thief that comes in the night. And I think maybe you said it’s like a little bit of your brain shaved every day.
Yeah. So it’s like having a sliver of your brain shaved every day. My brain today, I’m operating to some extent and your listeners can look this up off of what the doctors call “cognitive reserve”, which is an extra fuel tank, so to speak. And my mom had it, but what happens is that the fuel tank gets drained down as it is with me. And I could do this interview, but when it’s done, I’ll be done. And I tell people, my mind is like an iPhone, still a sophisticated device, but it has a short term memory, it pocket dials, and it gets lost very easily. And 30% of my short term memory now can be gone in 30 to 60 seconds. If you put me in a room where there are people I’ve known for 20 years, I won’t know who they are or their names. I see things that aren’t there. I go into tremendous rage at times. Deep, deep depression. I also have advancing prostate cancer and twice I toyed with and came close to leaving this planet and told the good Lord Who said, “No, we’re not done yet.”

Wow. So in the midst of that faith hope and humor, how does humor flow into that very dark place?

Well, I think if you can’t face an enemy and stare the enemy down, the enemy owns you. And I’ve learned that I have a lot of dreams. . And when I was a young man, a young reporter, I was raised Irish Catholic, but starting more my evangelical walk. And I had a dream one night where – and maybe it was more than a dream – Satan had one foot in my chest. And in the dream or in between the dream, I saw a hand come across my face and I heard, “I am God. And you can’t have him”. That’s where the faith comes from. And there was another time when early in life, when I was doing what normal kids in their twenties do – drinking and carousing – I’m just a regular guy. I don’t want to be portrayed as anything else. And I was at this bar one night, overlooking a beautiful swath of the Atlantic and all of a sudden, it wasn’t fun being there. And I felt called out. And I drove my car up the street to a sand dune about 75 feet above the sea. And it was one of those nights where you could see the Milky way on Cape Cod. And I started asking questions like who is God, who’s the Father, Son, Holy Spirit, is this real? And I found myself in a conversation, I wasn’t sure with who . And I kept coming back because I wanted to be there and fast forward to that, it was about 25, 26.

And I have notes here I’m looking at, but I was down at the beach. It was a beautiful beach. It was a beautiful September day. The sky was blue and I was running and I felt a peace, Scott, that I’ve never felt before. And I yelled out, “If that’s You, God touch me!” And the next thing I know, I’m in the sand and I’m balling my eyes out. And I heard in my heart, which is, I believe the place of the soul. I’m an imperfect guy, Scott, but I heard in my heart, the place of the soul, “Yes, I am real. I am God. And I’m never going to leave you”. So how now in my life, can I refuse to do anything other than follow God as an imperfect person? And that’s what I’m trying to do to tell the story of – not only Alzheimer’s, but to tell the story of how you leave this planet in faith, hope and humor.

Well, it’s obvious. I think God loves all his kids, but it’s been obvious to see God’s hand both in dreams, which I think do come from God oftentimes. And in his spiritually speaking to your heart, I think it’s nurtured your faith. And are you saying that your faith has helped you in your battle? The fight and it, I think it is a war. Your battle with Alzheimer’s?

Yeah. That’s what is getting me through it. And I think the faith is allowing me to hold on longer until God says, the Lord says, “We’re done”. I was so angry at God. I think God has big shoulders. This was a while back. And I went into rage when the lights in my brain went out and I started screaming and I started yelling at God and I had what I call the WTF. And you could figure out what the initials mean, talk with God. But I used the real words cause I was that angry. And I said, “What the WTF?” And I said, “You gave me Alzheimer’s, I have advancing cancer”. The body breaks down in Alzheimer’s because brain signals don’t go down.

I have no feeling for the most part from my knee to my feet. I had my spine recently rebuilt. I’m trying to do the best I can. “Do you have a clue who I am?” And I was angry and I believe God, the Lord Jesus, Father, Son, Holy Spirit talks to us in language that we use often. So we know it’s him. And you know what? I heard what I heard a word that I use all the time. I said, “Do you have a clue who I am?” And I heard because I want a tough God. And I heard in my heart, “Yes, dumb ass. I made you and I have you right where I want you.” And I said, “Okay, then we can move on”. “I just needed to know you were there”. But I was so excited that my God called me a “dumb ass” that made me love God. Even more. He knows you. And every we’re all different in our relationships with God.

Encouraging Those Struggling

I think God does know us personally, as an individual. I think he has a personal relationship with you. And I know someone’s listening right now, Greg, and they’re going through Alzheimer’s and they’re looking for something that you have found. You have found a phrase, a personal faith that is helping to pull you through. So if you are going to talk to somebody that’s struggling, maybe today’s been a day of rage. Maybe they’re having a moment of clarity. What would you say to them to encourage them in their journey to fight this, this demon?

Well, the first thing I would say is you don’t have to fight it alone. You can fight it with the Father, Son, Holy Spirit, and an army of angels. That’s what I would tell. And my mom, who was the hero, taught me in her Alzheimer’s how to write and speak from the heart . And the heart, I believe is the place of the soul, which is our essence and survives- our body decays, our mind decays, our soul never does. And she taught me how to find that place of the heart. and there’s some work there. You can’t do it without prayer. You can’t do it without meditation. But when you find that place of the heart, I find that you have more of a direct line to heaven, and it’s very humbling. I have to tell you this, Scott, it’s incredibly humbling, but how can I give up? I know I’m repeating myself as my wife says all the time. I am a dumb ass and I’m an Irish guy and I’m not an angel, but God has asked rough people around the edges to do a lot of things in life.

Do’s and Do Nots of Alzheimer’s

Well, the book is, the Bible is filled with men and women who are not perfect by any stretch of the imagination, but God’s grace came to them and gave them what they needed to walk through what they had to go through. We love when the Bible says that we would know Christ in the power of resurrection, we love that. We love the power of resurrection, but the Bible also says that we would know God, we would know Christ in the fellowship of suffering. And you’re walking through the fellowship of suffering. You’re walking through a valley. I think maybe you understand Christ work on the cross a little deeper than some of us. And I think that faith is helping to pull you through, which is amazing. Just to hear now, let me say, I know someone that has, Alzheimer’s, a friend, a family member, or someone that’s listening has a friend or a family member. What can we do to help people that have Alzheimer’s and what should we not do when we’re around people with Alzheimer’s?

Well, that’s a very good question. The first thing I would say it’s a four letterer word, but don’t get nervous is not what you might think. It’s called love. L O V E. And showing that love and touch is so important. Just a soft touch of the hand on a shoulder. In the late stages, people don’t connect that much. Again, I could have another 10 on this journey. So in the early stages you know, something’s wrong. So to have a friend, a relative say, “Hey, I love you. I’m with you, and I know in your heart and your soul, you’re a hundred percent there and you’re dealing through this and I’m going to stand with you”. And I think that’s so important. The other thing is let’s say you’re talking to someone with Alzheimer’s and they say, “That’s a lovely red wall”, when the wall’s really blue. And then sometimes people will try to correct them, say, “No, it’s a blue wall”. And what that does is it reinforces that there’s something wrong for the person. Does it matter if it’s red or blue? Just say, “You’re right. It’s a lovely wall”.
Well, they say everyone sees color different anyway. So we all see gradations of color. “That’s a lovely blue wall.” When we talk about colors, can I talk about my mother and the color yellow?
When my mother was in her journey in Alzheimer’s she started noticing yellow cars and things that were the color yellow. And my wife had said, “What it is about your mom?” And then I started spending more time with my mom and she was talking about yellow and seeing that yellow car. And finally, as a journalist, I studied the color yellow and people should Google it. It’s got a lot of interesting definitions, but yellow, it tells you was also “the color of angels”. And I said, “Oh my God, the angels are coming to take my mom home”. She talked about it so much that my brother, Tim, and one of 10 kids bought a yellow Jeep. And my mom was thrilled. And he pulled the Jeep up to the house on Cape Cod and came in and my mom is in the throws of Alzheimer’s. And she looked out, and Tim, I didn’t know this until recently, Tim said, “I love that yellow Jeep”. And then she said to him in her Alzheimer’s, “Did you know that yellow is the color of angels?” So when it came time to take her to the nursing home, I’m driving down. My brother, Tim, is back at the house. And the nursing home was like 15 minutes away. Driving down, two yellow cars in front of us, two yellow cars behind us. I called my brother and said, “You’re not going to believe this”. Then the cars peel off. Then they came back all the way down, yellow cars surrounded us to the nursing home. And I know my mother went there to die and she died like four or five months later. And before we’re through, I’d like to tell the, if I could tell the story of my mom’s death, because it’s about faith.

Personal Story: Family with Alzheimer’s

I’m with you on this as well. I believe that as the physical and many times the intellectual diminishes that the Spirit can become enlivened. So we’re talking to someone sometimes in a hospital bed and they don’t look responsive, but I think that their spirit can be very much alive to the presence of God. So we should talk to them fully. Like they are present, we should affirm them like they are present because I think many times they’re connected to the Kingdom of God in a greater way than we may be at that moment. But go ahead and tell the, the story of your mom.

I think you’re totally right. And that gets back to your earlier question about talking with people. My father had passed away. She clearly went there to die. And I had taken a picture from her house of her father, my grandfather, who died of Alzheimer’s and put it at the foot of her bed in the nursing home. So when she woke up every morning, she saw him. I get a call one night, four months or so, right at the end, from the nurse there saying, “Your mom is very scared. She’s upset. You have to come down”. So I came down, she was asleep in a private room. I woke her up, she was five foot, one a hundred all through her life. She’s gorgeous. She’s brilliant. Five foot, like 110 pounds. And she’s lying about, and I woke her up and I said, “Mom, I’m sorry to wake you up. They said that you were scared”. She said, “No, Greg, I’m glad you’re here”, Scott. That was the first time in eight months, she could use my name. And I know people will question and people are, they can question all they want – that’s that’s their right. But I felt the spirit of my grandfather in the room and I said, “Oh my God, something’s going to happen. And I held my mom’s hand and we talked little talk, but this is defying. The stereotype of all, she was talking from her soul and because her mind was dead. She was talking through her soul and I waited there until she fell asleep.

I kissed her on the forehead. She woke up immediately and said to me, Greg, “Where are you going?” And I realized Scott, that this was emotional to tell her, but I realized that moment was at hand. And I said, “Mom, I’m not going anywhere. We’re going to ride this one out together”. And I sat down, held her hand until she fell asleep. I kissed her on the forehead and she never woke up again. Fast forward, six months later, I was asked by, and then I’ll get to the end of this, asked by the National Alzheimer’s Association to speak out in Hollywood and Beverly Hills that it’s called an at night of SARS. Then they don’t call that now. But all the top Hollywood people Emmy award Oscar awards Tony award winners. And they had entertainment that night, but I was the keynote Alzheimer’s speaker.

And I’m backstage looking out at a sea of a thousand people saying, “Oh my God, there’s a lot of people – stand in these shoes that I’m in. And generally I’m not nervous if I’m going to speak or write, but I was very nervous and I looked up to heaven and I said, “Mom, this is for you”. I heard again in my heart, my soul, very plainly. She said, “Greg, you rock this. You just rock it”. That’s how she talked. I went out, I had a prepared speech and Scott, I rocked it. And as I was rocking it, it was kind of cool. There was a woman standing behind me, made me feel so comfortable. So secure so much at peace, so confident. And I kept giving the speech. I wanted to look to see who it was. And I just said, “No, it’s just stay focused.”

So when I was done, a thousand people stood up in a standing ovation. David Hyde Pierce, who was the actor, was the MC and said, “See, that’s what we’re talking about”. And I was crying. And people in the audience were crying, and I turned around to thank the woman and she was wasn’t there. So I go back to the tables of 10, and I sat down, and I said to my wife, “Who was the woman standing behind me, she made me feel so comfortable. So confident; who was she?” And my wife said, “What?” And I said, “Who was the woman who was standing behind me? She made me feel so loved, so comfortable. So much in the place”. And my wife, Mary Catherine said, “Greg, there was no woman behind you”. I went around the table to 10 people and they said, Greg, “There was no woman. You were on the stage alone”. And I said, “No, I wasn’t”. I said, “The spirit of my mom and the spirit maybe of hundreds or thousands of others were there in this disease to give people faith, hope and humor”. So I’m guess I’m telling anyone who is listening, there is faith hope and humor. That’s not only going to help you on your journey, but it’s going to lead you to the promised land.

And I hear you, Greg, saying we respect humanity at all stages.

Yes, we are there to support and to love and to affirm the humanity.

Connecting with Greg O’Brien and His Work

We don’t stigmatize Alzheimer’s we don’t pull away from it. And I’m just loving the conversation because you’re just causing us not to turn away, but to look full face in this darkness and bring light into the darkness. I want to just tell people, remind them, you’ve written this incredible book, “Pluto Inside the Mind of Alzheimer’s” and then coming out in may have you heard about right?

The film has been released and its in select theaters. It’s, “Have you heard about Greg?” I’m not good on an acronyms, so maybe you could help me Scott, take the letters of, haveyouheardaboutgreg.com and that’s the website.

Here’s how to find it. Here’s how to find it. It’s have you heard about Greg? https://www.hyhag.com And that’ll connect you with the movie site or they can go to the, the title of your book, which is on Pluto. They can go to https://onpluto.org/ But Greg, I want to thank you so much for sharing.

Shout out real quick to the producer, Steve Kelson LA filmmaker. We grew up in New York, outside of Manhattan. Steve’s mom and my mom were friends. They were Cub Scout, den mothers together. They both died of Alzheimer’s and part of this film is dedicated to them.

So good. And thank you for your contribution to the conversation and the encouragement that you’ve brought today. Thanks for being part of the Influencers Podcast for all of our listeners, keep influencing your world for the Influencers Podcast. I’m Scott Young.