Lily Johnson White (00:01):
It's a monster, it's a beast. And once you've seen it up close, you don't want anybody else to have to see it. And if they're going to see it, you want to be standing by them and giving them every piece of advice and access to care that you can offer, because no one ever should have to go through this alone.
Opening (00:21):
Welcome to BrainStorm by UsAgainstAlzheimer's, a patient-centered nonprofit organization. Your host, Meryl Comer, is a co-founder, 24-year caregiver and Emmy award-winning journalist and the author of the New York Times bestseller, Slow Dancing With a Stranger.
Meryl Comer (00:40):
This is BrainStorm, and I'm Meryl Come. Today's edition is the first in a series of podcasts on breaking through the silence of Alzheimer's disease. Our guest is Lily Johnson White, a philanthropist, businesswoman, mother of three, an activist committed to promoting social responsibility, civic engagement, and public art. She is sharing her family's personal Alzheimer's journey publicly for the first time. Lily, thank you so much for joining us.
Lily Johnson White (01:09):
Hi Meryl. Thank you for having me.
Meryl Comer (01:11):
Lily, it's been six years since your mother's passing. Why now? And what persuades you that this is the right time to speak out?
Lily Johnson White (01:21):
I think I needed maybe six years to process that experience, and unfortunately, I think like many of us, I have more and more friends who have family members or people they know going through this disease together. So I think I would've benefited greatly and my family would've benefited greatly from being able to hear stories like ours. So that's why I wanted to talk about it now.
Meryl Comer (01:49):
It took me 10 years, Lily, to step out myself, so I appreciate your comment. Your mother's obituary read Elizabeth Ross Johnson, the Johnson and Johnson heiress, one of New York's wealthiest women and a high fit life fixture since the 90s passed away at her home in New York on June 3rd, 2017 after a lengthy battle with Alzheimer's disease. She was 66. Now Lily, family dynamics are always complicated and private, and when a family is high profile, one has to assume that it's even harder. Is there a family conversation that went on before you stepped out, or what's the dynamic about going more public?
Lily Johnson White (02:31):
I'm really sharing my personal story here. I have four siblings and I think we all had very different experiences going through our journey with our mother. My sister pretty much gave up her life to take care of my mother and my brothers and I, in varying degrees also had to drastically change our lives. And I'm so proud of all of us. I'm so proud that we came together and worked together to take care of our mother. It's really not an easy thing to do and everybody showed up. I would like to thank her best friends and the caregivers who stayed with us and my uncles and our physicians. They were wonderful people. We were very lucky to have them. And my friends who supported me. It takes a big network. It's an absolute communal effort. There's no way you could ever do this on your own.
Meryl Comer (03:24):
Can you describe your mother for us in the best of times? Her personality or style, her persona with friends and family, along with a reputation for blazing her own trail.
Lily Johnson White (03:36):
Yes. My mother at her best was absolutely full of life. She was a go-getter. She was incredibly adventurous. She was always wanting to be on the edge of life. She always said that, you know, the sweetest fruit is out on the thinnest branches. And that's how I remember her. She was the most fun. She was always ready for a laugh and ready for an adventure. She loved to bring in as many wild and interesting characters into our home as she could find. She was incredibly well read. She loved to write. She gave the best toast at every dinner party. She loved to dance. She made sure that her kids saw as much of the world as she could show us. So I think she was just a very bright soul.
Meryl Comer (04:24):
What are the most endearing qualities about your mother when you were a child, which you try to emulate with your own children?
Lily Johnson White (04:31):
She was so loving, you know, you couldn't walk by her without her giving you a hug and telling you that she loved you. She really valued family time. And so every breakfast, lunch, and dinner that we could spend together, we spent together. And she had enormous compassion. She just believed that everybody's experience in the world was valid and that we should celebrate all walks of people. And I think that that was a really beautiful lesson that she passed on to me and my siblings that I hope I'm passing on to my kids.
Meryl Comer (05:04):
In a very touching obituary, it was written that your mother reportedly lived by the credo, that when you were given much, you have a duty to give a great deal back in return. Can you share her diverse philanthropic endeavors?
Lily Johnson White (05:19):
From my earliest memories of her, she was always working in communities to offer whatever resources she had, whether it was to help the homeless or working with the AIDS community in New York. She was a huge advocate for any underdog that came her way later in life. Her great passion became a project that she started in Cambodia, where she wanted to educate Cambodian orphans and help them through higher education later in life so that they could come back and be citizens of their great country. She loved children. I think if I, I look throughout her life, her greatest passion was, was caring for children and helping families.
Meryl Comer (06:02):
So when I did some reading, it was her early development and support for the Dance Theater of Harlem to advocacy for the AIDS crisis backing wildlife conservation in Africa to her love of the Central Park Conservancy.
Lily Johnson White (06:17):
She was not a stand on the sides write a check sort of person. She wanted to know, she would do her research, she would get involved. She really, really believed in giving back and she felt very fortunate. So she knew how much she she be giving back.
Meryl Comer (06:32):
For those of us who have lived the journey, we have a hindsight that offers us a different perspective when you're right in the middle of the disease. So what were the earliest symptoms that were easy to miss?
Lily Johnson White (06:46):
In hindsight, looking back, she was somebody who really was a go-getter. She loved to drive fast cars. She loved to go to parties, she loved to have lots of people around. She loved to travel, and some of those things started to fade. Looking back, one of the big markers was that she stopped driving. She didn't wanna drive anymore, and that had been something she absolutely loved to do. She started to push people away and become more agoraphobic. I would say that took a while, but looking back, that was a big shift. She loved to read and stopped reading in the moment, it didn't really register when these things were happening, and it's really only in hindsight that I see them. It felt like she started to shrink as a person and become more afraid of life and become more suspicious of people. And those were big differences.
Meryl Comer (07:38):
Alzheimer's creeps up on you and your family, so it's hard to see many of those aspects change because they're subtle and they become the new normal for us all. Do you think at some level she was cognizant that something was different and wrong?
Lily Johnson White (07:55):
Oh, very much so. I mean, she was misdiagnosed a few times. It took us years to get a diagnoses. She had been told that she was vitamin B deficient and that that was what was causing the cognitive fog. She had gone and flown fighter jets in Russia, <laugh> and gotten a concussion, and she was told that this was because of that. It took us a long time. It took her a long time. She felt very much like something was wrong. She knew something was wrong, but no one could give her a real answer about what it was.
Meryl Comer (08:27):
She was also young.
Lily Johnson White (08:29):
Yes, very young.
Meryl Comer (08:30):
Most doctors don't like to tell because there hasn't been anything to treat. We're just on the breakthroughs right now. How did she respond to the diagnosis when she got it?
Lily Johnson White (08:43):
She was devastated. We were all absolutely devastated because when she was diagnosed, the doctor that gave us her prognosis said, you know, she's got three to five years to live. And we were all just floored. We had never heard of early onset before. We didn't know what that meant because we didn't know anything. I think for her, she was such an optimistic person. She's like, I'm going to beat it.
Meryl Comer (09:08):
It brings up a very important point in family dynamics when a loved one makes that kind of assertion, you don't want to take something away from them. So did you adopt that same attitude? We're going to beat it.
Lily Johnson White (09:22):
Yes and no. I think my sister and I really threw ourselves into finding as many resources as we could in trying to figure out where to turn. My mom had a very big life. We knew that no matter how many years it took that there would be a lot to manage with the running of her life and her care. And so we were really lucky. One of her best friends was deeply involved with Alzheimer's and research and had resources for us. So we were lucky. We had access to information, but even with that access and access to amazing doctors, there was so little, like there was just nothing for us, and there was no way to predict what was going to happen and what responsibility we would end up having, which I'm sure every person who's come on this podcast has said, it's just wildly overwhelming and there's no reference for it anywhere else in our society for the kind of care that family members end up taking on and having to give. So yeah, it was, it was a big shock. We all tried to stay as positive as we could, and I think we did. And that is somewhat of a family culture. Yeah, it quickly got very scary and, and very sad.
Meryl Comer (10:35):
Where were you in your own life at that time?
Lily Johnson White (10:38):
I had just gotten married and I had just found out that I was pregnant with my first child, and it was a, it was a big blow. It was really sad. She loved baby. She was so excited that we were going to have a child and that she was going to become a grandmother. And my relationship with her and her relationship with my children turned out to be very different than what I think we had all been expecting to happen. When my first son was born, she was starting to have real cognitive decline, and I remember coming home from the hospital and her coming over and holding the baby and being so happy and so excited. But then five minutes later, needing to hand the baby back and, and just being so uncomfortable - that was hard not to have her in my corner in that phase of my life.
Meryl Comer (11:28):
You managed her care at home. I like to say I made it up as I went along because there weren't resources out there to really help. What was the hardest part? Because your mother was so fiercely independent, would she accept help?
Lily Johnson White (11:44):
No, in the beginning, definitely not. She was fiercely independent, unbelievably stubborn, and very strong, very strong minded, and it took us a long time. We cycled through a lot of caregivers and support people throughout the entire experience. We were really lucky that we could find those people because as you said, it's such an opaque experience to try and find those people with those specific skill sets, and you need more than one every day. It's extraordinary. The amount of support that someone with Alzheimer's needs in the later stages.
Meryl Comer (12:23):
Her Friends - What happens to those, who were around your mother? Did they disappear? Was it deliberate on your part to keep them at a distance? How do you manage that when she's the center of so much attention for so long?
Lily Johnson White (12:39):
I would say it was a mixture of all of those things. We did keep it very private and very quiet. Of course, her closest friends all knew, and I would say I have a lot of compassion for the different reactions that her friends had, because some of them, it was in their nature to show up, and they did, and they were unbelievable. They were just so loyal and so loving and fearless in their friendship. It's incredibly heartbreaking to see your friend become somebody else, which is what happens. They're not themselves anymore, and it can often be violent or aggressive, and that's really hard to watch, especially as a child. But you know, some of her friends showed up for that, and that was incredible, and other ones had to step away. I understand that too. You know, they just couldn't watch it happen. That was not the person that they were friends with and that they wanted to remember. Overall, her friends were incredible, and it was a small group, but they, to this day, still stay involved with my siblings and I and remind us of who she was and have told us incredible stories about her that we didn't even know. <laugh>, that's been one of the only silver linings. This entire experience has really made me understand how fragile our mental health is and how quickly it can become something very different. That's a universal human experience that's not just people dealing with Alzheimer's. So yeah, it's scary to watch.
Meryl Comer (14:08):
What are your life lessons from this journey, and how has it impacted the life you've chosen for yourself?
Lily Johnson White (14:16):
I would say for my family and I going through this, that the importance of community is huge on so many levels. I understand that in a way I didn't before. I would say if I was to go through this, I would tell my children to be as loud and public about it as they could be. I don't think anybody benefits from keeping this in the dark corners, and I think we're learning a lot, but we still don't know so much about the brain. And I'm 42, and I know now that taking care of my mental and, and brain health starts 10 years ago. In terms of how I raised my family, I, you know, I would say it's probably the same as how my mother raised me. I want to be as engaged in life as possible. I want to learn as much as I can. I want to be an eternal student, and I want my children to feel the same way.
Meryl Comer (15:10):
As you've recounted, your mother had the reputation of being somewhat fearless, how do you think your mother would feel about you breaking the silence to help other families who were living the Alzheimer's journey?
Lily Johnson White (15:23):
I think she'd be thrilled. I think she would've done the exact same thing. I think she would understand that we live in a world now where that's more encouraged maybe than in the generation she was brought up in. So she'd be proud for sure.
Meryl Comer (15:39):
So I took some notes from different obituaries that I read, vibrant, yet utterly shy, lovely mercurial, opinionated, spontaneous, generous. She leaves behind a legacy of love. Lily, how would you like your mother, Elizabeth Ross Johnson, to be remembered?
Lily Johnson White 15:59):
I remember her as an incredibly loving and adventurous person. I think she would like to be remembered as someone who always went to bat for the voiceless or the unrepresented. I think she was a very joyful person and would want to be remembered that way. I don't think anybody who suffers this disease would ever want to be remembered in that chapter of their life. So I think of her as the wild woman who traveled the world and helped as many people as she could.
Meryl Comer (16:38):
Lily, you me, there were many caregivers that your mother was challenging. Are there people that you'd like to recognize for supporting you and the family during the journey?
Lily Johnson White (16:51):
In my experience, we needed every single person who was willing to have hands on deck.
Meryl Comer (16:55):
My advice is when the doctor said you're going to wear out, you need help and for people to take the help. Mm,
Lily Johnson White (17:02):
Yes, absolutely.
Meryl Comer (17:04):
Once you've seen the disease up close, I think you're changed forever in some way.
Lily Johnson White (17:11):
Absolutely. Absolutely. I mean, it's a monster, it's a beast. And once you've seen it up close, you don't want anybody else to have to see it. And if they're going to see it, you want to be standing by them and giving them every piece of advice and access to care that you can offer, because no one ever should have to go through this alone.
Meryl Comer (17:33):
Our guest today has been Lily Johnson White, who is sharing her family's personal Alzheimer's journey publicly for the first time. That's it for this special edition, breaking Through the Silence. If it's time for you to share your personal story, please contact us at BrainStorm@UsAgainstAlzheimers.org. I'm Meryl Comer. Thank you for brainstorming with us. Our team is on a mission to help you stay up with the latest scientific breakthroughs from new therapies to technologies on early diagnosis and personal brain health advice from well-known experts using an equity lens that promotes brain health for all. Now, we'd like to hear what's on your mind, what are the topics and guests you'd like to hear featured on brainstorm? Send your comments to BrainStorm@UsAgainstAlzheimers.org.
Closing (18:28):
Support for BrainStorm by us against Alzheimer's comes from Eisai for four decades, as i's commitment to Alzheimer's disease has never wavered. Even when faced with complexities and challenges that caused others to relinquish pursuit, Eisai has never given up on developing therapeutic and ecosystem solutions for people and families living with Alzheimer's and other neurogenerative diseases. Subscribe to brainstorm on your favorite podcast platform and join us on the first and third Tuesday of every month.