Jon Henes,

Jon Henes, "Alzheimer's Disease: A Letter to My Mom"

I’m super excited to be here today with Jon Henes. Jon is a partner in the restructuring group at law firm Kirkland & Ellis where he has led some of the largest deals in the world. He has written extensively online for CNBC, Bloomerberg, CNN, The Wall Street Journal, The Deal, Forbes, and Medium. He frequently appears on CNBC as a guest expert. Jon serves on the board of CaringKind: The Heart of Alzheimer’s Caregiving, Common Sense Media, The Foundation for Education in Honduras, and many other nonprofits. Jon has lectured at Harvard Business School, NYU, Wharton Business School, Wake Forest Law School, and Cardozo Law School, where he is an adjunct professor. He lives in Manhattan with his wife and five children. His series of essays about coping with his mother’s Alzheimer’s disease are absolutely brilliant.

For Jon’s Medium essays, click here.

Zibby: Welcome to Jon.

Jon Henes: Thank you very much.

Zibby: You’re welcome. Jon, you are an amazingly prolific writer. Your writing style is crisp, clear, and relatable. You even made me understand the top five reasons why the debt ceiling might not be raised, or at least I now have a grasp on the issue from 2011 in a whole new way. How did you learn to write so well? When did you start writing for publications?

Jon: I don’t know if I write so well, but I started writing for publications back when the financial world exploded. A guy named John Walt who used to run CNBC at that time was somebody I knew. He reached out to me and said, “We have nobody here who truly understands bankruptcy. Can you write something, try not to write it like a lawyer, and send it to me and let me see? If I like it, I’ll post it.” I wrote it. He said, “Oh. This doesn’t look how a lawyer would write something.” It went from there. I never had to submit things. I would just hand them over to CNBC and they would post them. I found that I liked to write. I could write very quickly. I would have a few minutes in the day and would have some idea and would write it. That’s how it started with CNBC and Bloomberg and those types of organizations.

Zibby: So you never even had to pitch? People were just comin’ after you?

Jon: Yeah. I don’t even know if they were chasing me. It became very easy to go onto their blogs and put things on there. It was fun.

Zibby: While you’re this amazing writer about all sorts of legal and business issues and really help distill the essence into something very simple for everyone to understand, I really wanted you, on this show, to talk about your series of essays on Medium about your beautiful mother Karen, now age seventy-one, who is living with Alzheimer’s. In your piece from March 2016 called “My Mom’s Vacant Eyes – Living with Alzheimer’s Disease,” I’m going to quote, if that’s okay.

You wrote, “Yesterday, on my birthday, I visited my mom. For the past ten years, my mom has been living with Alzheimer’s disease. She is not alone. More than five million Americans live with the insidious, carnivorous disease, which attacks their brains and steals their memories. The disease is not merciful; it does not impose a quick death sentence. Instead, it sadistically devastates its victims from strong, thoughtful, compassionate people to empty, distorted images of their former selves. It’s horrifying and heartbreaking to watch. It’s not like watching a car crash in slow motion; it’s actually watching the person you love disappear slowly one memory at a time before your very eyes.”

I’m literally about to start crying again. This is heartbreaking and so beautifully written.

How did you switch gears from professional writing and start writing about your mom?

Jon: Alzheimer’s is an amazingly difficult disease to grasp. Everybody deals with it differently. For a very long time, I just didn’t deal with it. One day my son was asking me some questions. This is when he was, obviously, younger. I wrote a letter to my mom. I decided I was going to take my son with me, because he wanted to see her, and read it to her. Then after I read it, I showed it to a couple of people. People said, “You should try to publish this.” Then I ran around knowing nothing about publishing and asking people, some reporters that I knew and things, “Where should I put this? Where should I publish it?”

Somebody mentioned Medium to me, so I did it on Medium. I sent it around. Maybe I posted it on Facebook. I can’t remember a hundred percent how I got it out there. Then it picked up. Five or six thousand people read it. More importantly, I started getting calls and emails from people, friends and others, who said, “I’m going through the same thing. I don’t really know how to deal with it. Reading this helped a little bit, to see somebody else going through it as well.” Everybody had a similar story, but their own unique story. Writing it, it helped me cope. I was not reaching out to other people and talking about it. I wasn’t letting people know about it. Then when I wrote this and I got the response in terms of, “Hey, this is helping me,” then I thought maybe I’ll write a little bit more.

Jon Henes,

Zibby: That’s great. Were there some things that you found that you had been struggling with and not talking about that other people specifically had been struggling with?

Jon: Yeah. The thing about Alzheimer’s disease is that it doesn’t happen all at once. It’s not like you wake up one morning and you find out that your loved one doesn’t remember anything. It’s very slow. Every family deals with it, and every person deals with it, differently. In my family, my father started to see differences in my mom. She was a financial planner. Her partner saw differences in my mom. They raised them with her. She got defensive. “No, that’s not true. I’m not forgetting things.”

Zibby: Differences like what? What’s a good example?

Jon: My mother went back to school to get her MBA and then became a financial planner. My mother was the type of person who connected with everybody. She always looked for a connection. People loved being around her because she was incredibly caring and looked for the good in people. When she was a financial planner, her clients loved her because she was trustworthy and honorable and good at what she did. Then, she would just forget. She wouldn’t call people back. She always called people back. People would say, “We’re not hearing from Karen. Why is Karen not getting back to us? This financial report that we were supposed to get because we needed it for our taxes, she didn’t get it to us.” It’s things like that. They would ask her about it. Since her memory was going, she would say, “That’s not true. Of course I’m calling people back. I always call people back.”

It was little things at first. My dad, he’s a veterinarian. He had his medical/scientist hat on. He’s like, “There’s something wrong. We need to find out what’s wrong.” He ran around going to different experts and hospitals to try to find out what was going on. In the meantime for me and for my wife, we were hearing little bits and pieces of this. None of it made sense. Of course there’s nothing wrong with my mom. The genes in our family are amazing. Her grandmother lived to be 105. Her great aunt lived to be 107. She was as healthy as the day —

Zibby: — No Alzheimer’s in the family?

Jon: No Alzheimer’s. My grandfather, her father, late in life developed it, but it was in his eighties. It was very quick. He got Alzheimer’s and died within a few months. He was in his eighties. There was no early, sixty years old having Alzheimer’s. For our family, my dad’s running around trying to figure out what’s going on. I’m sitting there saying, “Wait. This has got to be stress related.” My dad had sold his veterinary practice. That was a whole new thing for them. My mother’s father had died. Her mother was sick. She was the breadwinner now for the family. I said, “This is all stress related. She’s fine. She doesn’t have Alzheimer’s disease. This is crazy.” The rest of the family, her brothers, didn’t believe it either. It became actually a thing, for lack of a better word, where people were like, to my dad, “You’re crazy. She’s fine,” my mother being like, “I don’t have this. I’m fine,” me not wanting her to have it, so not wanting to believe it. As all of this is going on — this is all happening over a couple of years — it pushes family members apart. My father and my mother’s youngest brother don’t talk at all anymore. They were very close for fifty, however many years.

Zibby: There’s wasn’t any sort of vindication when he turned out to be right?

Jon: Nope. I still they think don’t want to believe that it’s all true.

Zibby: Really? Even now?

Jon: Yes. People run away. It’s a very scary thing. As we were preparing for this, people start thinking, “Wait a second. What if it happens to me?” It gets very scary. People want to run away from that sometimes. Some people run towards it. Some people run away from it. What I found when I wrote that letter to my mom and published it, one friend came to me and said, “I want to talk to you very, very confidentially.” I’ll do that confidentially now. “My father has Alzheimer’s disease. My mother will not allow anybody to know. She hides him now from everybody.” He was a very prominent person, got fired from his job, all because of the Alzheimer’s disease-related things, but nobody knew he had it. People thought he’s just fallin’ down on the job. Maybe he has some other problem, who knows, substance abuse. What could it be? He said to me, “I’m struggling because I want to go get help. My mother, she’s embarrassed by it. I don’t know what to do.” That, I think, a lot of families go through.

Zibby: That’s so interesting. I never would’ve thought that.

Jon: It’s a crazy, crazy thing. I’m like this. When I wrote the letter to my mom, people were like, “We had no idea that your mom even was going through this.”

Zibby: People that knew her?

Jon: People that knew me because I never talked about it. I still don’t really talk about it. This is as much talking about it as I’ve done in a long time.

Zibby: I’ve seen Still Alice, a movie about Alzheimer’s which I never stopped thinking about. There was a quote you wrote in one of your pieces when she didn’t recognize you. It was from Thanksgiving. You were saying, “How can I be thankful when I said to my mom, ‘I am Jon, your son,’ and she smiled at me and responded, ‘I think maybe I do know you, but I don’t know how.’” What is that like? It’s so devasting to even read it. Do you want to just cry? I would feel like I would burst into tears.

Jon: It’s devasting. You sit there and say, “This is my mother.” I think I’ve come in that full circle, 180. I don’t know what the exact degree is. My initial reaction was, “I can’t do this.” She’s already gone. She’s not there anymore. Why am I dealing with this? I’m now at the point where I’ve said, “I need to go see her.” Maybe it’s for me. Maybe it’s for her. I don’t know who it’s for. I need to go and at least spend some time with her.

Zibby: You stopped seeing her for a while, right?

Jon: I haven’t seen her probably for six months now. It hasn’t been a conscious thing. It hasn’t been, “I’m not going.” It’s been much more, I’m just incredibly busy. I’ve got five kids. I’m running around. I’ve got work. When do I have time to jump in the car and drive to Westchester to see my mom? I just don’t have time. I can always make that excuse. It’s not a conscious, “I’m making that excuse. I don’t want to go.” At the same time, anybody else in the world could look at that and say, “You mean you can’t jump in a car and drive forty-five minutes to go see your mom? Of course you could.” It’s a hard thing.

Now, she’s passed that. She can’t really speak at all. It’s not going to be, “Hey. Do you remember me? Do you know who I am?” “Oh, I think I recognize you.” It would be, “Do you know who I am?” Her body’s tightening up. She clenches her jaw. The doctors said she’s going to break her jaw because she grinds her teeth so hard. I just saw a friend of mine. I should say, he’s a friend of mine, but I haven’t seen him for years. I ran into him. He came over and said, “I don’t know if you know, but my mom has Alzheimer’s. She’s in a nursing home. They just called to say she forgot how to eat.” That’s what happens. If the person with Alzheimer’s lives long enough, their whole body forgets everything. At the end, the way they die is they forget how to swallow. That’s it. They get some tubes to feed them until they die. It’s a terrible thing. It’s horrible.

Zibby: You wrote in one of your essays that you were in the Jewish Quarter in Italy, and it made you realize that you wanted to reconnect with your mom and all her love of Italian language and everything. Tell me about what happened there.

Jon: My wife and I just went to Italy. We were in Rome. We went to the Jewish Quarter. The second we walked into the Jewish Quarter — I don’t know if you’ve been there, but it’s very small — my mother was with me right away. That is where she would’ve gone first.

Zibby: Are you Italian?

Jon: No, Jewish.

Zibby: There are Italian Jews.

Jon: There are Italian Jews. I don’t think we’re Italian Jews. Anytime she would go anywhere, when she would come back there would be some discussion about some synagogue, could be anywhere in the world that she’d go. When we walked in, I was like, “If she was here right now…” Between the Hebrew letters everywhere to the mandel bread which my great grandmother used to make, to just having this small group of Jewish people in this incredibly Christian country, she would’ve been all over that and loved it. My wife and I had been talking for a while. My wife’s been pushing me to go see my mother, which I appreciate. She’s right about it. At that moment, I was like, “She’s with me.”

One of the things I’ve written about and maybe talked about a little bit, I was at a funeral. This is now years ago. A grandfather died. We were at Central Synagogue for the funeral. Obviously, it was incredibly sad because funerals are terribly sad. Somebody that everybody loved so much died. We sat there. The kids got up. The grandkids got up. They talked about this man and how much they loved him and how much he meaned to them. They told all these stories about how funny he was, how incredible he was in this way. Business colleagues got up. Friends got up. You saw this whole picture of this person and their whole life. I was sitting there. While it was sad and felt terribly for the family, then I watched everybody come together for this family. You had five hundred people, however many people were there, that all were there to celebrate this man and to be there for this family. Then I realized that with Alzheimer’s disease, you don’t have that. I’ve said this to my wife. When my mother finally dies, physically dies, I’m not sure they’ll be anybody at the funeral.

Zibby: I’m sure that’s not true.

Jon: I’m not sure how many people really will be there. So many people have left and gone on with their lives. She’s gone to so many people. Even for me, it’s as if she died years ago. Then, do you remember all the stories? They’re not fresh in your mind anymore. It’s almost like talking about somebody who died years ago. With Alzheimer’s, you see that. How long can you expect somebody’s friend to sit around while this person’s disappearing to just be there? My father has said that too.

When she first got diagnosed with Alzheimer’s, there were so many friends around. Then one at a time, they would go off. My dad, I don’t know he a hundred percent understood it. He’d be like, “This doesn’t seem fair. Everybody’s leaving me. I got this to myself?” I would sit and be like, “Dad, what are they going to do? They have their own lives, their own things to go to. They can’t just sit around and watch mom.” It’s a very difficult thing. When I was sitting in the Jewish Quarter, I was like, “She may be gone, but as if she has already died, she’s always going to be with me.” As we were sitting there walking through the Jewish Quarter talking about her, that’s how you keep people alive.

Zibby: The process of mourning, it starts so much earlier for you. There’s so many societal things where people gather together, like the funeral, and yet you miss that. Instead, you’re silently suffering. It must feel so lonely in a way, to be mourning the loss of a person slowly versus…

Jon: Exactly. It’s not a real mourning.

Zibby: Because they’re still there.

Jon: They’re still there.

Zibby: It’s still losing the soul of somebody, right? The soul is slipping away.

Jon: Yes, a hundred percent. You don’t know when it happens. It’s this thing that you’re watching the person disappear. One day you’re like, “Oh, wait. That person’s now gone,” but you didn’t know when. I’ve said this to my wife. I almost feel like if somebody gets diagnosed with Alzheimer’s, you should go have a memorial service right then. Let the person be there. Do something so everybody can come around. Then it’s just a slow — usually slow, especially if it hits early in somebody’s life — decline until .

Zibby: I think they should have memorial services for everybody while they’re alive. Why not hear all the good stories? My grandmother, who’s ninety-five, keeps being like, “Read me your speech. Let me hear it.” I’m like, “I’m not ready to write it yet.” She’s like, “Come on. Come on. I don’t want to miss it. Let me read it now.”

Jon: I get that.

Zibby: I get it too. If you could go back in time fifteen years ago, say, when your mom and you had this great relationship, would you handle things any differently? Would you be a different type of son? Would you tell her what was to come? Would you do anything differently?

Jon: I don’t know if I’d do anything different with my mom. My mother and I were incredibly close my whole life. She was my confidant.

Zibby: Were you the oldest? Are you the only?

Jon: I have a sister who’s eight and a half years younger than I am. My mother, we were incredibly close. We look a lot alike. We’re very similar in a lot of ways. I hope I was a good son to her. I think I was. I think I’d do different things now since she got Alzheimer’s disease. One thing, maybe, I would’ve done is to say, “What would you really want?” This is going to sound really horrible, but this is from my perspective. If somebody told me today, “You have Alzheimer’s disease now. Now, not like you’re going to have in twenty years, but you have it now. You’re going to start forgetting everything. Everything’s going to go away. Your body’s going to shut down,” I really do think I would say, “At some point, you’ve got to find a way just to — for everybody, for me, for you, for the family, for friends — just let me die. Find a way to let that happen.”

Her life now, there is no life. My father, it took him a long time. It was incredibly hard on him. He went and got help early on. He now has another life. He’s doing a lot of things. He’s still taking care of her. She’s still living at home. He’s still there. That’s so hard for him and so hard for him to watch it all, and for me, for my sister, my kids. My oldest two kids, they know her. They knew her because she was still around in there when they were little. My three youngest, they talk about her a little bit, but they have no idea. We don’t bring them there because I don’t know what it would even mean to them. I don’t think I would do anything different. I’m sure there were little things here and there I would do differently looking back. I do think it’s more of how do you deal with it moving forward?

Zibby: I mentioned to you I took that 23andMe test that says I’m at highest risk for Alzheimer’s later in life. I have Alzheimer’s in my family. Knowing that, in my head at least, I’ve been like, well, let’s say my risk is higher when I’m seventy-five. Now, I’m almost forty-two. What’s that? I have thirty-three good years? That’s thirty-three Christmas vacations. Where should I go? Work backwards. Not to say it will definitely happen. For so many people, it’s a possibility out there. It maybe helps live life better now. Whether or not it’s seventy-five — obviously, any of could get hit by a car tomorrow. Everyone has their expiration date at some point.

How do you live life today knowing that either this type of thing is coming or just something is coming? How do you keep that in every day and be more present or mindful?

Jon: For me, I try not to think about what would happen if I, or somebody else, got Alzheimer’s disease. To your point, you could get hit by a car tomorrow. You just got to live life to the fullest. Life expectancy’s getting longer. We’re seeing more and more people getting Alzheimer’s disease. I think some of that’s from longevity. There’s other people that are talking about all the different drugs people take now to help them sleep, or anxiety, can also have an impact.

Zibby: Perfect.

Jon: I know. Trying to find a cure, at the end of the day, is so important. If you look at how much money the federal government spends on diseases and Alzheimer’s, it’s so small, which to me is crazy. All diseases are bad and if we could have a cure for every disease, that would be amazing. So many people are impacted. I don’t know how many it is exactly today. Let’s say it’s five million people with Alzheimer’s. If you think about how many other people are impacted by that, their families and everything else, you could be talking about twenty, thirty, forty million people. Obviously, everybody should live life to their fullest and enjoy every moment. You never know when it’s going to end. That goes for not just us because who knows if somebody that we love gets it. With my mother, watching that happen.

Zibby: I’m so sorry.

Jon: Thank you. I appreciate it.

Zibby: It’s so awful. I’m sorry you had to go through this. The good that has come out of it is your ability to share so honestly and openly with so many people, and the writing. Do you have any other aspirations with your writing? I think this would be such a beautiful memoir.

Jon: I appreciate it. I’ll say this, two things on that. The way that I generally write is I — the thing I wrote about my mother and the Jewish Quarter, it came to me. I had my phone. I go onto to my Notes while I’m sitting in the car, going to the next, going to the Colosseum or whatever, I just type it out. I write it. I send it to Pam, my wife. She reads it. Then I post it. It’s generally just inspirational. Something inspires me, and then I write something quickly. I’ve always thought about publishing, if I really thought it would help people. I can’t help it, this is just my own personality; I sit there and say, “Yeah, I wrote something. Maybe it helped somebody, but is it really that meaningful?” I do think about writing it and putting it together. I have no idea how I would do that.

Zibby: Connecting with people and making people feel less alone on whatever journey they’re on always is helpful. I haven’t even gone through this yet, and I was so personally moved by what you wrote. I think you should keep it up. It’s beautiful. I want to read one more passage that you wrote to close. It was the same essay that I started by reading, the one about “My Mom’s Vacant Eyes.” You had been looking at a picture of your mom back when she was fully present.

“I turned from the picture and walked back to my mom. I smiled at her and looked into her eyes. They were vacant. Behind her eyes is a disease – a disease slowly eating away at her brain, although the ferocity with which the disease is acting is now increasing in strength and speed. I so wanted to connect with her right then. It was my birthday and if only for one moment I wanted my mom back. I wanted her to know how much I love her and how much I appreciate everything she did for me. I wanted her to know how much I miss her and how so often I would do anything just for a hug from her or to hear her amazing words of wisdom and understanding. But, as I stood there, smiling at her and looking into her eyes, it was clear that my mom left some time ago. She was no longer there behind those vacant eyes. She no longer lives in that frail human frame that topples over; she no longer lives behind those eyes that stare straight ahead. Instead, she lives within all of those people who she connected with and loved. Instead, she lives within me.”

It’s so pretty. It’s so beautiful. Thank you for sharing.

Jon: Thank you for this.

Zibby: Thanks for sharing with listeners.

Jon: Thank you.

Zibby: Thanks, Jon.