Carrying On a Legendary Legacy with Sisters Johanna and Antonia Bennett

Episode Transcript

Dr. Correa:
From the American Academy of Neurology. I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katie Peters. And this is The Brain and Life podcast.

Dr. Correa:
Welcome back to the Brain and Life Podcast. And for our regular listeners, you probably already figured out today, our guests have a musical background given the featured music in this introduction, and I want to thank Antonia Bennett's family for sharing their music. Katie, have you and your family listened to Tony Bennett over the years?

Dr. Peters:
Yes, absolutely. Tony Bennett is an icon and so many of his songs are great. I Left My Heart in San Francisco. Wow. Did I just attempt to sing? Oh my gosh. My father used to sing that song, but like me, he did not have much melody or tone like the wonderful Tony Bennett.

Dr. Correa:
Well, I did grow up singing in a choir, but I am going to avoid any attempt to try to sing anything. But I've always been a fan of his jazz albums and the jazz album he did with Bill Evans, and especially a lot of his songs and albums with his iconic duets like Cold, Cold Heart, his career and work truly spans many of our family's generations.

Dr. Peters:
He was just so collaborative, Tony Bennett and I really enjoyed his duets. I agree with you completely. And what he did with Lady Gaga was just like so awesome. And so I'm a fan also.

Dr. Correa:
And as many of our listeners and readers of the Brain and Life Magazine know later in his life, Tony lived with and shared his diagnosis of Alzheimer's Disease and he still continued to perform for a long time, very close to the end. And today we're joined by his daughters Antonia and Joanna to share more about Tony, his life and their experience as family members and children of someone living with Alzheimer's Disease. And make sure to listen all the way through for our medical expert discussion where we welcome back cognitive disorder specialist Dr. Joel Salinas.

Singer:
Met the woman of your dreams. Because love never dies, it only changes with the times. I hope you will remember me. Do you still remember me?

Dr. Correa:
Welcome back to the Brain and Life podcast. Today we've got two guests for you, even better. All of you as our listeners and our Brain and Life readers know that within the arts and the community living with neurologic conditions, we have a love for musicians. And today we are coming to a musical family. We have with us Johanna Bennett. She's a live events and film producer, and now in New York City and Antonia Bennett, a singer, songwriter and talented jazz musician who performed at times alongside her father for over 25 years. You guys may have all caught it. The last name Bennett. Tony Bennett, as many of our audience knows, their father, Tony Bennett, was diagnosed with Alzheimer's Disease in 2016 and continued to celebrate his love for his family and music for seven years. And they are here today to share their story and perspective as family members touched by Alzheimer's. Thank you so much, Joanna and Antonia for joining us.

Johanna Bennett:
You're welcome. Thank you for having us.

Antonia Bennett:
Thank you.

Dr. Correa:
So I wanted to hear some, and I'm sure we all want to know, what was it like living in the house and in the midst of Tony Bennett's musical career and what does that childhood look like?

Johanna Bennett:
Well, that's a little bit of a complicated answer because when we were quite young, our parents divorced and lived on different coasts. So I mean, I'll let Antonia tell you her own feelings and experiences on it, but for me and my memories there was before the split and after the split and before the split, my parents separated when I was about eight. So Antonia was four. It varied. We were on the road, we were living in different places. Dad wanted to record a lot with the London Symphony, so we picked up and moved to London, which I kind of remember as if it was a dream. And then he wanted to play tennis all the time.
So we picked up and then moved to LA and we're back and forth between London and LA lot in that four year period before dad left the house. And then everything was dramatically different. It was the times that we were with dad or that dad would come to LA spend with us and the times that weren't, and they were two different dimensions as far as my memory goes, but I'll let Antonia speak to it herself.

Antonia Bennett:
Yeah, I don't remember really any of the, I know we were there because I've been told and I've seen pictures, but I certainly don't remember England at all or being in London. But what I do remember, my memories are mostly of them apart. So I remember spending all the holidays with him and then a lot of weekends in places like the Fairmont Hotel in San Francisco, which is so funny because I'm here in San Francisco right now working or Atlantic City or Lake Tahoe because it was close or Vegas because it was close. And we would do a lot of these places annually or he would have kind of residency. So he'd be there several times a year. And so a lot of the time that we spent were in places like that. Or he would come to LA and rent a house for a few months, so we would be within walking distance of each other.
And the memories that I have with him are really going to museums. We spent a lot of time going to museums or drawing and painting together or listening to music or going to see music and musical theater. I think both of our parents, both our father and our mother, did a really good job of exploring us to all the different art forms and it was important to them both. So we did have a fairly good kind of life on the road education of different cultural arts.

Johanna Bennett:
I mean to just riff on that, one of the things that we did do a lot with our dad is that he had this kind of thing with other celebrities that he really respected or were heroes to him or that again, that he really respected. He felt that was kind of artistically a contemporary of his. For example, he had this incredible bromance with David Hockney. So all of a sudden we were in a car going to David Hockney's to hang out with him. He used to tell a story, I don't really remember, or I might remember because he told it to me so many times, so it might just be an imagination. But there was this time when we first moved to LA that he took me to John Cassavetes house and we sat in his garage and watched him edit and talk.
Funny enough, the last time I went with dad to one of those things, dad was about 85 or 86 and we went to dinner at Eli Wallach and his wife Ann's house. And he still had this same kind of childlike wonder that he always had of really asking the other artists, questioning them about their process and different things and their points of view basically.

Antonia Bennett:
He was very curious and he really asked a lot of questions and a lot of books that he loved. One of the books he loved was The Artist's Way. He must've read it a gazillion times, I don't know. But he would always underline the book in the same place. And I think many, probably Joanna, you and I both received that book from him with his hand. I think I still have it with-

Johanna Bennett:
A couple copies over the years, right?

Antonia Bennett:
Where he would inscribe something to us that he thought was poignant to one of us and the way that we were evolving. And then he would underline things in the book that he thought was so important and he would do that with many books, but that's just the one that comes to my mind right now that he loved. There was another book that he loved, which was all the famous bad reviews that different famous composers like Beethoven and Bach got over the year for their most famous symphonies.
And he loved that book because he thought that book was great. But there's many things like that he really just loved to learn and to relearn and to re-go over things. And I think that that was something that was maybe sometimes it took him for certain things. There might've been some undiagnosed ADD or something like that for him, but really had his own way. He was really driven to do the things that he loved and he would just go back into things and go over and revisit things over and over and over again if he was interested.

Dr. Correa:
Along those lines, I mean, that's just amazing to have something like that. Things and notes that he's written and books and experiences that he has shared and you can kind of go back to, but your father has something unique and you have something unique that very few people have that, he has literally song books of music recorded and him speaking. How is it now in your experience, going back to that and being able to connect to his voice and his own speaking as you reflect now on your time with him?

Antonia Bennett:
I find it very comforting personally. I often listen to his records and I'm going back and listening to records that I never really listened to very much of. I mean, there are certain records that I always love that I listen to a lot, but his catalog was so large and I find myself going back and listening to records that I really never listened to or maybe were not his most popular records, and just getting cues and learning things about my own craft, but also about him, just it's a way for me to feel close to him and I'm glad that I have it and that there's, in a lot of ways, to me, it feels like he's still here. It's a very strange thing. It's kind of bittersweet. I mean, I know he's not here, but at the same time, it's hard to imagine a world where he's not in it. So somehow I still feel connected to him. He's still around.

Johanna Bennett:
For me. It's a little bit of a different experience. It's pretty hard for me to listen to him. I still feel pretty strong in the grief process. It's been almost two years, but we also had a very difficult time in the moments leading up to and after him passing just in our own personal lives. So it's still a little hard. The thing is, is that with Dad, because he was such an icon, he is so all pervasive. People don't, I think even really realize how pervasive dad's music is that you walk into a restaurant or a department store or into an elevator of a building and there's some music playing. A good 80% of the time I'll hear my dad. So it can be a little bit, oh God, steady.

Dr. Correa:
Now, Antonia, you were mentioning before that at some point each of you started to notice that this kind of interaction, the discussion, his outreach started to decrease or you needed to be the one to engage. Was this something that you noticed even before the diagnosis in 2016 and what were some of the things that were changing at that time?

Antonia Bennett:
For me, I noticed that there was, he always had certain things that he always had kind of a, I don't know how you would say it, a slippery memory for certain things that sometimes it would be one way or the other, and then other things he was very spot-on for. So it's really hard to say, but I noticed a lot of big changes and I think once you have understanding of what's going on, a lot of things are easier to accept. But in the beginning you start wondering, and so this is a big, I think I'm probably not the only one who's gone through this, but I felt that, oh, is this just something that happens when you get older?

Johanna Bennett:
Yeah, I thought a lot of it was old guy stuff.

Antonia Bennett:
He was a young old man for so long.

Dr. Correa:
And was there a thing that changed and things that he was able to do or the way he was communicating and interacting with your guys that you really noticed? Okay, this seems to be more than just a little slippery memory.

Antonia Bennett:
So I remember one time being in the car with him and him saying something like, oh, well, when I was living with you girls when you were 16, at that point, he had been separated from my mother since I was, so he was kind of rewriting the whole history of my childhood.

Johanna Bennett:
I lived with him when I was 16. I ended up going to boarding school in Connecticut and then being in New York with him.

Dr. Correa:
I see.

Antonia Bennett:
But he was rewriting it as we were all living together in Los Angeles. I thought, wow, this is really, that to me, as I said, he did have a slippery memory sometimes that would not remembering things exactly the way that they were, whatnot, but that seemed like a huge departure from what was normal for him.

Johanna Bennett:
For me, it took a minute for me to really realize that he wasn't there because I was also maybe just more frustrated with him from a young age with his cognitive issues. There were a couple of head injuries from famously one from the war, and there was another incident that happened when he was a kid in the famous, there's a famous public pool in Queens, I can't remember what it's called, but some bullies had thrown him underwater and he hit his head and he actually had to be revived. And this is when he was quite young, I would say 10 or 11 years old, something like that. So there was that, and then there was a car accident in the war where the Jeep flipped over and he had a hand injury from that. And then he was also a jazz musician for crying out loud. Honestly, the two things, the dementia, the Alzheimer's dementia, and the kind of being out of it from either the head injuries or the drug use or both, they look the same.

Antonia Bennett:
I mean, you feel kind of stupid when you realize, oh wow. There were a lot of kind aha moments that I had that I felt like, oh, I had been upset about something with him or whatever, or I thought he was just being difficult. And I realized after the fact like, oh wow, no, this wasn't necessarily his fault. He was having a hard time.

Dr. Correa:
Having the information of a diagnosis is helpful, but it's not the only answer and doesn't resolve all the issues. So even once you had that information, if it was shared with you, what ended up being still some of the more challenging or rewarding moments that you had moving forward with him?

Antonia Bennett:
I think in general, if you're lucky enough, it's a strange way to put it, but if you're lucky enough to have a patient with dementia or Alzheimer's that is not volatile all the time or something like that, then you just kind of have to meet them where they are. And that means that if they're happy about something, you tell and they laugh and then two minutes later they tell the same story and they laugh again. You should just be in that moment with them because they're still experiencing joy and happiness. And he was very blessed to be able to perform for as long as he did with The Dementia and the Alzheimer's, and he was getting a lot of joy and reward from that. And it was like his medicine in a lot of ways, it kept him going.
But on the nights that we had off, I certainly remember him saying, oh, do I have a show tonight? No, dad, you've got a show tomorrow night. And then two minutes later asking the same question. Those types of things happen, but I think really the most important thing is to just really try to stay in the moment because they're living in the moment. Everything. Joanna, I heard you say many times it's like he's in a dream state. It's like that Songheim song. If life were made of moments, then you'd never have a bad one. And I think it's really true. You kind of have to meet them where they are and just be there. And I can imagine we were not his full-time caregiver towards the end, but I can imagine that it's very challenging. That could be quite challenging for somebody who's over exhausted and maybe caring for somebody all the time. That could be quite a lot and challenging.

Johanna Bennett:
I want to point out or let everybody know that he didn't really decline until he was forced to stop performing. We may have had him for another five or 10 years if not for Covid, and not having to stop. It was like, and Tony is right, it was his medicine and he was also taking energy somehow from the audience. It forced his brain to work. But when he was off the road and he was really just sitting around watching TV principally of what was either Turner classics or tennis, and then sometimes the news, those were his-

Antonia Bennett:
And Jeopardy or something.

Johanna Bennett:
And it was very much like he was in a dream. He was having the sleeping a lot thing. And then he would wake up and he would see me and he'd be like, Joanna, but I could tell he was trying to understand whether or not this was part of the dream or if he was awake, things like that. And then he would just kind of slip back into sleeping again. The being awake took too much out of him, so he would just go back to sleep. So it was like that all the way up until the end.

Dr. Correa:
And I think balancing those good moments and those lucid times for people living with dementia is something many people can relate to. But how did the family and caregivers help him balance the emotional and physical demands of, because in his situation, his good moments weren't just hanging out with family, he was actually even still performing. How did you guys help him balance those two sides? I think very few of us would have a family member at that stage that would still be working and performing at that level.

Antonia Bennett:
I think I can talk about that a little bit because I was on the road with him during that time, and all the guys in the band, we were all there to support him. His wife did a very good job of, I don't think in those later years had she not been with him traveling, clearly he wouldn't have been able to do it, but everybody supported him. A lot of times he would sing the same song twice, once after another on stage. And I mean the audience never seemed to mind it. A lot of times he would get a standing ovation for doing it and the guys would just support him. I mean, they would just be there. We were all there. It was a little family and kind of road family combined with some of his actual family, and we just made it real comfortable.
And I think for so many people, if they can facilitate helping their loved ones to do something that they really can still do, that they enjoy to do that. That's a big part of it is being relevant in the world still and being a part of society.

Johanna Bennett:
Having a reason to get up and do something also.

Antonia Bennett:
Yeah, because if he didn't have anything to do, he would sleep all day in and out and still be able to sleep all night.

Johanna Bennett:
And even when he was off the road, he was doing his entire show in, his ninety-minute show in his living room every day. And then really towards the end it was more like three days a week, but still that kept him and engaged and yeah.

Antonia Bennett:
He was very good, if he was prompted to do something, he would do it. He may not do it on his own, but if he said, okay-

Johanna Bennett:
Time for you to vocalize or your piano player's coming over in 20 minutes, go vocalize, get ready. He would just get up and do it.

Antonia Bennett:
So he was really good like that for a long time.

Dr. Correa:
And from your experiences through all this, both as children and Antonia's working alongside him, what advice would you give to other families and other individuals kind of navigating the complexities of Alzheimer's or another dementia?

Johanna Bennett:
I actually have a close friend that is dealing with this with her mother right now, and it's really, really rough. But I would say that you have to find time to take care of yourself, that you need help to do it, and you shouldn't be the only one, if that's at all a possibility. And then the other thing that I would really, really stress is being very open and honest with all the other family members. If you're the main caregiver.

Antonia Bennett:
I think it's hard for a lot of caregivers, they are taking so much on themselves and it's hard on the whole family, and it's a balance for sure. But really my advice would be just the things that we've been talking about, to stay in the moment with that person. What Joanna said too, taking care of yourself and helping your loved ones to be able to facilitate them to do something that they still really enjoy and be present and part of a community or activity. I think those things are, if it's possible, those things are really important in making the quality of their life. Just because you have Alzheimer's doesn't mean that the quality of your life necessarily has to be poor.

Dr. Correa:
Now in the public space, we're seeing more and more members of the arts community sharing how Alzheimer's and other dementia's and many other neurologic conditions are impacting their lives. How do you see that now as affecting all of our understanding about these conditions, but also reflecting on it as family members of someone in that position?

Antonia Bennett:
I think it's good that people are talking about it. I think a lot of times with older people or any kind of diseases that have to do with older people, a lot of times don't get the funding that they need for research. People are more focused on things that attack people young, but I feel that that's really wrong because it's something that attacks the whole family and then the whole family has to come together to kind of manage it. And I mean on a lot of levels it's wrong, but on the minimum. And I think that now there's a lot more research being done and a lot more openness to talk about it.
And generations before maybe had more of a, well, you don't do your dirty laundry in public type of idea or I'm not sure what, but we live in a time now where there's a lot more openness. And I think that's wonderful. That's a way through because if you can't have the conversation, then there's a lot of loneliness that happens and other kinds of issues that happen, and it's important for people to be able to have support and know that they're not the only ones that are going through something like this.

Dr. Correa:
So how are you taking this experience on for yourselves when you're thinking of your own brain health and your family's brain health?

Johanna Bennett:
Well, right when dad got the diagnosis, I kind of entered into menopause. So I mean the brain fog stuff and then every time I can't remember where I put the car keys or something or I forgot somebody's name or something that I am supposed to know. I definitely think it's the Alzheimer's, but it's more likely that it's just the menopause. And it's been interesting like that, and it's been much better since I started taking bioidentical hormone replacement. So there's that, and you go through a thing, am I going to lose my mind? And you try to push that out of your head. I had a doctor that when we found out about dad that I said, do I go get myself tested for something?
Do I go get scanned now? And she said, "Honestly, even though you have Alzheimer's pretty directly in your family, I would suggest that you don't." And I said, why? And she said, because you've got a 50/50 chance of it manifesting, and I don't want you to think every time you forget something that you're getting Alzheimer's and you go down this kind of psychological rabbit hole. So far I've been taking that advice, but I might change my mind.

Antonia Bennett:
For me, I really think that I have really good chances that I could potentially have this because I have ADD, I have auditory processing and I'm dyslexic, and I do things like I can't find my keys. And I call my husband and I say, I can't find my keys. Where do you think I could have left them? And he'll say, "Did you check the front door?" And they'll be in the door or things like this. And so I think, okay, this looks really familiar. Our father never took the keys to his house. He would leave the door unlocked all the time, and everybody said, you can't just leave your apartment unlocked.

Johanna Bennett:
Well, yeah, he could. He lived in very fancy buildings.

Antonia Bennett:
But he would just leave the door unlocked all the time. So I think there's a lot of similarities there in the way that we learn. And so it does scare me, but the only thing I can think of as far as just remaining calm about it is just doing the best that I can. So that's eating well. There are certain foods that I eat that if I eat too much of, I find it very hard to concentrate like sugar. I do drink a lot of coffee, but I'm not on any kind of stimulants for my ADD. And I try to eat clean, get a moderate amount of exercise and not indulge in substances other than caffeine. And really that's my way through. But I don't know. I don't know if that's enough, and I don't know if I am a very big candidate for it. I think it's probably best not to know.

Dr. Correa:
I wanted to hear from each of you as your perspectives. What do you see? I know I feel a great importance for the research that should move forward, having had grandparents both touched by vascular dementia and Alzheimer's and wanting to invest in my own in all of our community's brain health. But it seems like right now there are a lot of challenges to the funding of research for dementia and Alzheimer's and many other conditions. What actions do you think are important for people to consider and to ensure that this progress continues?

Antonia Bennett:
Well, I think the numbers are one in every two people that, one in every two people will develop Alzheimer's or dementia. Those are pretty high numbers. I think it's really important for people to realize that, and not just also with Alzheimer's, but for people that are maybe challenged in other ways, autistic people as well. These people are now a part of our society. They're functioning in our society. They're not all at the level of not being able to do something for themselves. There are now people out on the street that maybe get confused in the middle of the day. And it's important for us to understand that we're dealing with all different kinds of people that are at all different types of level, and not everybody has the same capacity, and that's okay. Again, people can still contribute to society in different ways. And I think my overall theme is really what I've been saying. You have to kind of meet people where they are and look at the broader picture.
And it's very disappointing to me that there isn't more being done for this considering that there are so many of us at risk. And if you're not a patient, you'll probably the end up being a caretaker at some point. So those are pretty big numbers, and I think we all need to wake up to the fact that this is what's going on now in our lives and that we're all probably going to have to deal with it in one way or another at some point. So better to stay on top of it. Knowledge is power and to be aware and check out our resources and to make as many accommodations for people suffering in this way as possible for both the caregiver and the patient.

Johanna Bennett:
Yeah, I mean also the thing is that as Antonio was saying, is if it is true that it's like one in two, then everybody's got a 50/50 shot at this, and you would think that that would be of importance to a lot of people.

Dr. Correa:
Yeah, let's hope we all move forward together and find ways to support our own possibilities of improved long-term brain health, but if nothing else than those in our family, in our community. Thank you so much Antonia and Joanna for joining us today. We love taking the opportunity to celebrate Tony Bennett's music and his time and really appreciate you sharing your stories.

Johanna Bennett:
Thank you so much.

Antonia Bennett:
Thank you for having us.

Dr. Correa:
Are there questions you have about living with and thriving with one of many neurologic conditions? We're excited to start taking your questions and feedback and sharing those responses here with you on the podcast. You can also email or record audio message and send it to blpodcast@brainandlife.org. And of course you can also reach Audrey and I on social media or the Brain and Life team at Brain and Life MAG, that's M-A-G.

Singer:
Do you still think of me? And time is passing by.

Dr. Correa:
Thanks again to Antonia for sharing her music for this episode. We really hope you enjoyed it as both the intro to the episode that transitions between our interview with them and our expert discussion now. And as we close out, we'll have another piece. So make sure you listen all the way through. Now, last week we aired a live podcast recording with neurologists living with neurologic conditions and neurologic traits. And in fact, we're happy to welcome back Dr. Joel Salinas again as a medical expert with us to follow the discussion that we had with Joanna and Antonia about Tony Bennett's experience living with Alzheimer's and their experience being his children. And you've heard him before on our podcast. He is a dementia specialist at NYU, the founder of a telehealth service called Isaac Health that focuses on brain health and dementia. And you may have heard him in past episodes along with last week sharing about his experience with synesthesia and how other people experienced different neurologic conditions. So thank you again, Joel for joining us here on the podcast.

Dr. Salinas:
Good to be back. Good to be back. Thanks for having me.

Dr. Correa:
So one of the things that came out in our discussion with Joanna and Antonia is they were telling us about Tony Bennett's life as a jazz musician. Those late nights, the fun that jazz musicians have of all varying types. And it's like as we have aging family members around us and we love who they are as people, we start to wonder, how do we have discussions about some of the risk factors that are being discussed for brain health, for dementia, and hoping that we can support people to have their best optimal outcomes in life, but then prevent some of these conditions like dementia and Alzheimer's?

Dr. Salinas:
Yeah, it's always really prickly to talk about how you can change people's behaviors even if it serves them well, and I think that there is some benefit. Just know this might have the listener's rest at ease. Just bringing it up is already a benefit just because people who don't have other family members or others that can, for lack of a better word, nag around health, don't do as well because they don't have even that slightest level of awareness.
So even if you're coming in raggedy, I think you're half the way there at least. But really, really powerful ways to approach this can really have a focus on shared values and shared interests. So health is a really big one. It's not the same for everybody. Some people care more or less about their health, but you can frame it sometimes around independence, especially around brain health. If you want to be able to continue to drive on your own, if you want to be able to experience life on your own, these are some of the things that could help that by helping to improve your brain health. So that's one piece. There's so many factors that can help to promote brain health. So there's physical activity and heart-healthy diet or Mediterranean or mind diet, social engagement, mental health activities, better sleep. It's a long list of a lot of things that can be done.
It can be really overwhelming to just come in hot with your loved one and just tell them you got to do all these things. So I would say start low and go slow. So find one thing that you can work with them on in the spirit of helping to improve health and if you can participate in that with them, even better. We know that engaging in these types of habits in a social context but in a shared social context can be really powerful. So for example, if you're going to talk about increasing physical activity, figure out ways that you can both do that physical activity together. So whether it's going on a walk or going to the gym together or doing a class together, I always love the recommendation around classes because it's got the physical, the social and the learning. So the mentally stimulating element to it.
And if you encounter resistance and you might encounter resistance, it can be helpful to bring in some lessons from motivational interviewing. So in particular just really listen for motivation words as you talk to them about that change. So for example, if it's independence that they want or being healthy or looking good or feeling good or helping their mental health or not being a burden on the family, that can be something that can be motivating for others or aging well if you listen for those words and then couch what you're trying to bring to them as an offering within that context, how can you help to further their interests by doing this other thing? And you can also be helpful to highlight what's at risk if they don't do the thing. I try not to hang too far in that side. It can make the experience negative. Kind of like with diet, I don't like to talk too much about what not to eat.
I like to focus a lot more on what you can eat to help to improve your health, but really making the experience with the positive, really collaborative and one that's a shared experience, ideally if you're also doing those things as well with them, can help to improve the odds that you'll be able to make that behavior change that will help to reduce those risks over the long term.

Dr. Correa:
And along that point of collaborative, how do you suggest, as you said, there's a long list of possible things to work on and improve, and I liked your idea of starting a little bit smaller, picking one or two, but how do you suggest you're really picking that it is, should we try to identify with our family members what is the most significant thing that needs to be changed? Should we identify the thing that we are going to be most helpful or think that we can help them fix most? Or should we be allowing, even the term allowing? Should we have a conversation with them and them set that whatever that goal and target is to start?

Dr. Salinas:
Yeah, it should definitely be collaborative in a shared process. So the more sense of agency and a sense of control they have over the experience, the better. I mean, think about if you were in their shoes, what kind of a conversation would you like to have? Would you want someone to just tell you what to do or would you like someone to work with you to figure out what you want to do or what fits within your lifestyle best within behavior change, there's these two levers that are really powerful. One is thinking about motivators and the other is thinking about barriers. So in figuring through what is that one next thing to do, think about what the person's already motivated to do. So if they're motivated to learn, you might want to focus a lot more on the stimulating activities like learning a new language, a new topic, a new skill.
If they're really motivated to be physically active, then you can focus on the physical activity piece with walking, for example, if they're already, and this is kind of going into the more barriers piece thinking of how can you make the process as frictionless as possible if they already do a trip every day to the grocery store or to a relative's house, maybe working on how you can work on walking some of the way or parking a bit further away so you can do some physical activity that way.
Or another suggestion on this kind of concept of reducing friction is if you think about the whole process from let's say going to the gym is the thing and the thing that you want to do is go to the gym in the morning, rather than focusing on just waking up in the morning and then figuring out what you're going to wear and pack up your bag and then head over to the gym, have everything packed already, have your trip already planned, and then if you can, I would suggest going to bed in your workout clothes because that's one less thing that you have to cognitively think about in that decision making and that helps to reduce more of that barrier.
And alternatively, just like another factor like diet, if we're thinking of something more like the Mediterranean and mind diet, if you're already sharing meals with somebody or you're hoping to do meal prep for somebody, I mean that's an easier one. You can start to figure out how can I select more meals or prepare more meals that are more brain healthy for them within the context of what they want for quality of life. So if the issue is that they're eating too many sweet things like sugary beverages or too many sweets, figure out how you can still satisfy that sweet tooth with some healthier options or still have that what we call, in medicine like a dietary indiscretion, which always sounds so very naughty, the dietary indiscretion, but how to have that little bit of cake or that cookie at the end as a reward for something that was really, really healthy. It's a lot of what we call design thinking and just figuring out what the situation is and asking a lot of curious questions and figuring out what's the lowest hanging fruit.

Dr. Correa:
Just also the curiosity and the questions and actually having a conversation that is being so key. Now, one thing I was thinking about and also reflecting back from that conversation with Joanna and Antonia is, they had within their family, some awareness of the memory challenges and the cognitive changes that Tony was going through earlier on. How do you suggest for the family members, the children of some of the patients that you work with, how do they balance and handle that grief for what the loss of that interaction and that communication and that relationship with their who they see as their parent or their family member now and what they anticipate in the future about what's going to happen with their dementia?

Dr. Salinas:
Yeah, I mean this is one of the more challenging pieces around these conditions is navigating the changes that are going on and that will come and there's just so much uncertainty there that makes it so much more challenging and then add in that additional layer of discomfort around these topics which are very serious topics that it just becomes extra challenging. I think a couple of things that I've seen that can be really helpful here, is to start to have these conversations really early. It can be lighthearted, but have it in a way that's more focused on if this happens or when this happens. So I have this saying, if it's no longer awkward to have these types of conversations, it's probably a little late. You want to have these conversations while they're still early, which means that they're likely still going to be awkward and uncomfortable.
And I think it helps to be really vulnerable and frame it that way to just say, I wanted to have a conversation with you about something that's going to be really awkward and I'm not really sure how you're going to respond to this, but just know that it's coming from a place of love and care for you and that it's really out of the place of connection in the family. And then really help to frame it in as a way that's as aligned to their values as you can. The other thing to think about when you're likely to get pushback is to just be compassionate with yourself in the process. I think a lot of people really put a lot of pressure on themselves to talk about all the topics regardless of how the response will be.
And that can lead to a lot of upset and agitation and that can start to erode the relationship I think in the continuum of not talking about it at all and being way too aggressive. There's a sweet spot there in the middle where you want to find the right place in the right time and broach just enough of the topic as you can. One of the books that I just published is a Conflict Resilience is what it's called with my co-author who's an expert in mediation and negotiation. And this is a lot of what we talk about is how do you navigate that discomfort for yourself and just up at the top, it's really just having a pause for yourself in that situation and taking a breath to help to really calm these emotional systems in your brain so that way you can better engage with it.
And knowing that just sitting with a discomfort is already a big benefit of it, so that way you can continue to have that connection, which is much better than the opposite of just kind of avoiding or plowing through it, which is surely going to hurt the relationship. And on your point about the anticipatory grief, it's a very real thing. I think it's an important thing to keep in mind. I think for a lot of the listeners who've never heard of this phrase before, it can actually be really powerful to just have a word for this feeling. Anticipatory grief is just the grief around something that is likely to come in the future, usually a loss. It's something that we see a lot in patients who are experiencing cancer or the anticipatory grief is the grief about complications and death with the disease. And I think it's kind of similar within these conditions as well, which is a loss of functioning, a loss of independence, a loss of potentially of identity, a loss of personality and relationship, and a limitation of health and death.
These are life-limiting illnesses. We always encourage people to work with a professional to help to manage through some of these feelings, especially when they're very complicated. When you have a really complicated relationship with the loved one, you can rely on friends, family supports, other people who have been through this experience, but there'll be a place where they will tap out in terms of their skill level. And so it does help to have a professional involved like a psychotherapist or a counselor, but just one very basic technique that people use is to manage anticipatory grief is a visualization and giving yourself weary time.
So if it's on your mind, if you're ruminating on it a lot, and it can feel really hard to feel like you have some control over this, but if you just block out time on your calendar, let's say it's an hour from one to 2:00 PM or four to five or whatever time works for you and that's your worry time and that's your time to worry as much as you want about any of the extremes, think about all the possible outcomes and scenarios and how challenging it'll be. Make it as vivid as you can and that's your time for the worrying. And then anytime outside of that, when you find your mind going towards the worries about it, use that opportunity if you can catch yourself to be like, oh, actually I'm going to put that as a part of my agenda in my worry time. I'm going to worry about that specific thing during the worry time.
And it helps to reduce the amount of rumination throughout the day, kind of a pretty Buddhist concept, to just do a lot of the visualization of what's going to happen and do the processing as if the loss is happening right there in the moment. And really, really visualize it. Thinking about the worst possible outcome can really help to reduce some of the fear and anxiety about what might happen so that way you can really start to process what that can look like. And when it does happen, it doesn't mean you'll grieve less. It just helps you to be more present when that loved one is still there, when that functioning is still there to really be there in the moment with them and really enjoy that time that you have together to help to really be present for that quality of life because there'll be time for a lot more grief later on.

Dr. Correa:
That's really helpful. And maybe it's just me, but I see the uncertainty that comes with progressive neurodegenerative cognitive disorders like Alzheimer's Disease, in some ways being similar to some of the uncertainty that many of us might feel with things in our world and society right now. And I think that was a very helpful idea of both visualizing and having some set aside worry time. But are there other ways that you or other tools that you suggest in making space for being present now with those that we love around us, whether it's someone with a progressive neurologic condition and we want to be able to prepare and be there as care partners and for support in the future, but also want to optimize the time that we have to appreciate where they are now?

Dr. Salinas:
Yeah, I mean, I think one general recommendation around this is just, I mean, it's kind of this mindfulness in the experience just really being in the sadness, but also the joy of it and just being really attentive to that experience. And it sounds really easy, but it can be really challenging when your thoughts go new in different places and you have a lot of judgments, right? We have all these judgments that come up and we have a lot of positive and negative tags that we put onto these thoughts. It can be helpful to one, give them voice for yourself on your own, but when you're with your loved one, it can help to just really focus on the changes that are happening. So there's just kind of mindfulness hack that people have with children. When you have kids, it's very hard not to be present with your kids when you're watching them grow and evolve and learn over time.
Every day is a new day with your kids. And in a way it's kind of like that where you are paying attention to who your loved one is becoming and how they're evolving as a person and just thinking that each day this is a new version of themselves, each change that they have each day is just a new day to learn who this person is and develop a relationship with that person knowing that tomorrow there'll be another person and you'll get to learn what that relationship will be with that person expecting and accepting that there will be lows, right? There'll be low points in here, but also being really aware when the positive is happening that you don't lose sight of that. And so some people might recommend journaling.
I'll often have just the gratitude journaling, but I think just any kind of journaling where you're reflecting on both what was hard today, what gave me delight today, and then what am I looking forward to tomorrow? Just those three simple prompts can be really helpful. Some people use the rose, but a thorn of mnemonic for that where the rose is the positive, the thorn was the negative, and the bud is where you're looking forward to, can help you be a little bit more present and have some gratitude that there are some positive things to look forward to for the next day.

Dr. Correa:
And I like that the reflection or the idea of watching a young child as they grow and every moment is something new to observe, but then it brings back sort of the trope of often that people will state about an aging family member that you end up parenting your parent. And do you think that ends up being a helpful conceptualization or sometimes a challenge?

Dr. Salinas:
Yeah, I think it's both. It depends on how you frame it for yourself. Parenting can be really loaded based off of your background, so parenting can be a sign of love and nurturing and care and attention and respect and loyalty. I mean in Hispanic communities, family is incredibly important. So really focusing on the purpose that comes with serving your family and that us of the family can be really powerful. But parenting can also, for some people, be a really negative thing. It can feel like it's a task or a chore. It can feel like a burden. It can feel like a subordination of somebody when you don't want to subordinate them because you really respect them. And so you really want to figure through what your relationship with these dynamics really are and figure out how you want to frame it a way that will best sustain you.
When caregivers, whether it's adult children or spouses or other loved ones of someone with dementia are asked, why do you caregive? Why do you provide care for this person? A lot of them will bring up things like loyalty to the family or the opportunity to really be a part of this stage of this person who I love. And I think it can be really powerful to just really think about what an honor it can be to be a part of this process for somebody who you care about and respect and to really make that experience for them the best possible. And you're not going to be able to walk into the situations with that framework every day, right? There can be really hard days, they're agitated, or you're having to manage issues of incontinence, which can take a lot of time, but just having that as a touch point for yourself when you really need it.
One thing that caregivers will say in terms of just giving themselves a break is that there's this concept of respite, giving yourself a break and there's paid respite, there's informal respite, and that can come through day programs or home care aids or home health aids or respite through any other particular program that you can have someone take care of or have a neighbor or a family member come in and watch your loved one for you. But respite can also be microscopic moments. Some people call it micro respite.
So an example of that is taking a shower. When you're taking a shower, that's for you. I mean, certainly someone can barge in there, but if you lock the door and you're in the shower, that's your moment of just you. And so just really being aware of those moments that are just for you and really honoring that for yourself as best you can. Even if it's microscopic moments, multiple times throughout the day, ideally, the more time you can be present within that respite, the more likely you are to be able to look back and remember that, oh yeah, I did have a moment to myself.

Dr. Correa:
So we both have large Hispanic families. Many more people have blended families with different generations, maybe different partners and spouses, and sometimes those of us who are there and loving and thinking of that aging family member that we care about, we may not be the care partner or the caregiver who's there in the house. Maybe it's a newer spouse or partner in their life, like in Tony's experience, maybe it's someone that was hired to bring in. How do you discuss with families managing the expectations for the people who are there and the discussions about what everyone, roles and responsibilities, care, what they're contributing financially, time, love. It seems like there's just so many things and not everyone can do everything.

Dr. Salinas:
Yeah, it gets very tricky, especially if you're coming in with a lot of expectations of obligation, what somebody's role should be. We all come into these situations with people call invisible contracts. It's that we've engaged in a contract with this person that they're unaware that you've engaged them in that contract of what they're supposed to do and what they're not supposed to do. And I think it can be really helpful for the long-term, even if it's uncomfortable at first, to have a very frank, fully open and transparent exchange with family members and other people who can fill that caregiving role to figure out what can they do? What are they capable of doing? What's their capacity for it?
Because what you don't want is to be in a situation where you've kind of assigned somebody a role and they're not very good at it at all, or it's just causing a lot more distress. And if they're unable to fill that role, I think there may be some feelings to work through in terms of disappointment about what you had expected that they would be able to do, but at least you know where they're at and you know that you might need to bring in somebody else or reach out to somebody else in your support group who can support you better in the situation.
And it doesn't mean that they have a hard time with taking on the full responsibility that it means that they take no responsibility. You can figure out, okay, if you're not comfortable being the primary caregiver, well what can you do? Do you feel comfortable with supervision? Can you watch them for a few hours? Or can you help with sorting through belongings? Or you can help with prompting on things like dressing or can you help them with, bathing is a hard one, so can you get in the shower with them if it's a partner, right? Finding ways where there is some daylight in terms of how they can contribute in a very purposeful way can help to keep them included and also help everybody else who's in the caregiving role be a little bit more sane so that they have a little bit more access to respite than they had before.

Dr. Correa:
Well, thank you Joel, so much for everything that you do for helping the families and the individuals that you support in their path, resolve conflicts and find joy together in the time that they have and the time they share. And thank you again for joining us and being here for our listeners.

Dr. Salinas:
Thank you. Always a pleasure.

Dr. Correa:
Thank you again for joining us today on the Brandon Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain and Life magazine for free at Brain and Life.org.

Dr. Peters:
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Dr. Correa:
You can also find that information in our show notes, and you can follow Katie and me and the Brain and Life magazine on many of your preferred social media channels. We are Dr. Correa, connecting with you from New York City and online at Neuro Dr Correa.

Dr. Peters:
And Dr. Katie Peters joining you from Durham, North Carolina and online at Katie Peters MD-PhD.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
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Funny thing, how memories come flooding back when I pass the places we used to go and those silly things you used to do to make you laugh, and those secret places only we know. I'm happy to see the man you turned out to be and you met the woman of your dreams. Because love never dies. It only changes with the tide. I hope you'll remember me. Do you still remember me?

Carrying On a Legendary Legacy with Sisters Johanna and Antonia Bennett

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