The Caregiver Cup Podcast

Navigating Alzheimer's Agitation with Barbara Corcoran

• Cathy VandenHeuvel • Episode 233

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What happens when one of the sharpest minds in business takes on the deeply personal role of a caregiver? Barbara Corcoran, the iconic entrepreneur from Shark Tank, joins us to share her heartfelt journey of caring for her mother, Florence, who battled Alzheimer's Agitation disease. With her characteristic humor and unflinching honesty, Barbara brings a unique perspective to the emotional challenges and rewards of caregiving, offering listeners a blend of practical advice and inspiring insights.

Throughout our conversation, we address the rollercoaster of emotions that caregivers often face, from frustration and guilt to moments of pure joy. Barbara candidly discusses the significance of setting boundaries, prioritizing self-care, and seeking out resources to provide the best possible care for loved ones. Her personal stories emphasize the importance of empathy, family support, and understanding the emotional landscape of both caregivers and patients. Listeners will find themselves nodding along to Barbara's relatable experiences and invaluable tips.

Barbara also unveils her strategies for balancing a demanding career with the responsibilities of caregiving, showcasing the emotional returns of dedication and consistent care. She fondly recalls the "Sunday fun days" she created for her mother, highlighting the joy and hope these moments brought. Barbara’s advocacy for Alzheimer's Agitation awareness and her commitment to providing resources for those affected underscore her passion for the cause. If you’re looking to learn more or support Barbara’s campaign, be sure to visit RecognizeAlzheimersAgitation.com. It’s a valuable resource for anyone caring for someone with Alzheimer’s dementia and experiencing agitation.

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Cathy:

Hello, my Caregiver Cup friend, I am beyond thrilled and honored to bring you a truly special episode this week. Today marks a milestone for the Caregiver Cup podcast as we welcome our very first celebrity guest, and she is the incredible Barbara Corcoran. Barbara is a renowned entrepreneur, bestselling author and one of the iconic sharks from the ABC's Emmy Award-winning show Shark Tanks. Over 15 seasons she has invested in more than 120 businesses, showcasing her sharp business acumen and passion for empowering entrepreneurs. But Barbara's story is so much more than her business success. She was building her career and thriving and raising a beautiful family and then, all of a sudden, she took on the caregiving and physical demands of caring for Florence, witnessing her mother's gradual drift into Alzheimer's and the heartbreaking symptoms of agitation and restlessness.

Cathy:

In this episode today, barbara opens up about her deeply personal caregiving journey, sharing the resilience, love and the lessons learned along the way. Journey sharing the resilience, love and the lessons learned along the way. She combines her trademark humor you're going to hear it with heartfelt insights, offering invaluable advice for anyone caring for a loved one with Alzheimer's. But whether you're caring for a loved one in this role with Alzheimer's or not, I think you're going to go ahead and feel inspiration, and she's going to uplift you. And again, even if you haven't faced this caregiving challenge yourself, barbara's experiences provide powerful lessons on compassion, patience and strength that we can all apply in our lives.

Cathy:

Oh my gosh, I can't wait for you to listen to this unforgettable conversation, so I want you to grab your earbuds or your headphones and settle in and join me for this remarkable episode on the Caregiver Cup podcast. It's a must listen for Alzheimer's awareness and caregiver support. So let's dive in. Well, barbara, like I said, it's a complete pleasure to have you on the Caregiver Cup podcast and, as a matter of fact, this past month, I must be manifesting you and the universe when it comes to Alzheimer's, because there's been a lot of listeners saying is there any more resources out there for dementia and Alzheimer's? And I've been hearing from them. So, and Caregiver Cup listeners you probably have known Barbara for her celebrity status on Shark Tank and the renowned entrepreneur and author and leader and speaker I could go on and on Beauty queen you left out, oh gosh, yes.

Cathy:

And for me really, not, really. I wish I was. Well, you should be, you should be, but I don't think very many people know you for being a caregiver or the advocate for this terrible disease that your mother Florence went through L So I cannot wait for you to share your story and start with that right away. et's go ahead and share the story, because I was watching a few of your videos and you called your mom a love bug Exactly, it's the best word to describe her. I had tears rolling down my eyes because I lost my mom two years ago, and so I felt that connection the same way. So tell me about your mom Florence.

Barbara Corcoran:

Well, other than her being a love bug, which I guess is the best word to describe her personality. Everybody talks about their mother, oh, usually the same way. So I don't mean to be boring, but everybody loved my mother. Her kids, the neighborhood, the friends. Everybody loved my mother and she was filled with life and energy. I always say I never saw my mother sleep until she died. It's the truth. I never saw her lay down in my life. She was always on her feet through the night, through the day. I don't know how she did it.

Barbara Corcoran:

You were from a family of 10? You have 10 siblings, 10 children, and she had us in a two-bedroom house. She made all those children a living room couch with my dad. I don't know how they did it, but she had a baby every year and a half, just about, and their dream was to have 12 children. They only got 10. So she kind of felt let down a little Crazy, isn't it? I think she did enough, but they had the goal of mutually having 12 children, an even dozen.

Barbara Corcoran:

My mother was very capable until, very abruptly, we started seeing signs of what we thought were her normal aging and we all talked about as siblings because we visited her at that point. She had been in Florida two years with my father, who had retired and had an easy life in Florida, had a little house, my dad was golfing, everything was happy, but she started becoming very forgetful fast. Everything was happy, but she started becoming very forgetful fast. Uh, things that usually happen when people get older, uh like forgetting her keys, not knowing where her glasses were. But then one day, when I was visiting her in florida, she couldn't remember her best friend's name who came to visit. Her name was marion. I'm like you remember marion, mom. She's been your best friend your whole life. She could not remember marion's name, which gave me pause for thought.

Barbara Corcoran:

But shortly after that she came to take care of my brother, t, who was hospitalized for about a month with some illness. And she came to Brooklyn to take care of him and she didn't recognize the house. The second day she was there she didn't know where she was, and then the day after that she couldn't recognize the house. The second day she was there, she didn't know where she was, and then the day after that she couldn't recognize T. She said who's that man? Who are you? And that was really creepy. So T said something's wrong with mom. It's just not forgetful.

Barbara Corcoran:

Yeah, once she was diagnosed, t took a course in Brooklyn that weekend on how to deal with Alzheimer's patients and brought the whole family together. Partially out of the goodness of his heart and partially out of instruction from the course, he brought us all together and we all discussed mom probably having Alzheimer's and it's going to get worse, and what we could all do, and we all surveyed each other as to the best use of us. So we had an incredible group of kids, really all close in age and equally adoring my mother and we assigned duties. My job because I had the most money was to pay for everything, the easiest job in the world, which took a lot of angst out of the whole program.

Barbara Corcoran:

Right away I had my sister who was a hospice nurse. Her job was to make all the medical decisions because she had an awareness of it. My other sister quit her job as an administrator and took care of my mother and father, at first together, then later my mother in Florida, and then later she moved and was taken care of my mother and father, at first together, then later my mother in Florida, and then later she moved and was taken care of by another sister in a home in New Jersey until she finally wound up in the home. This whole long story took about eight years before she died.

Cathy:

Isn't that amazing? Isn't it amazing how the family can come together and all of everybody finds their role. It happened with my brother and my sister too. We kind of had our roles too.

Barbara Corcoran:

And if you work together, how did you decide on your roles?

Cathy:

My sister was a certified nursing assistant, so she knew how to do the care piece. My brother just listened to instructions.

Barbara Corcoran:

Really well we had him doing all of those.

Cathy:

Yeah, yeah, and I was really good at the administrative stuff and being able to take care of all of that insurance and the paperwork and advocating yeah.

Barbara Corcoran:

So we kind of did that with our parents and you know, the best thing of all was neither of you had resentment toward one another. Everybody was participating. That's not usually the case that I've seen with, certainly with Alzheimer's dementia. It's not usually the case that everybody participates. There's usually a lot of resentment, unfortunately.

Cathy:

Unfortunately.

Barbara Corcoran:

And some people that have to go it alone even though they have other siblings. So you and I were both lucky in that way.

Cathy:

Yeah, we were lucky.

Barbara Corcoran:

Yeah, things change. When a mother got to the home right as she got to the home actually, which was the last two years of her life my sister in New Jersey, you know she was bedridden and everything was going wrong. So we all knew it was time and three of my siblings drove her to the home when that decision was collectively made and she screamed at us we never saw this side of my mother. You don't care for me. Look what you're doing to me. Anger, ferocious anger. I guess we thought it was probably expected because she's going to a home and didn't want to go to a home. But more than that, we were so shocked to see a side of my mother we had never seen before. An angry, bitter woman was like that's not our mom, she's a love bug. No, that's not my mom.

Barbara Corcoran:

But that started her down a slightly different path and it didn't seem just like Alzheimer's dementia anymore. It sounded, even though we didn't know the name for it then. I don't even know if they had a name for it, but today it's called agitation and Alzheimer's dementia and it's a separate but a related condition but shows itself very differently. I think the symptoms there are typically restlessness, verbal and physical aggression. My mother wasn't physical, but she was verbally aggressive and she was certainly restless.

Barbara Corcoran:

The home which my sister ran, which we were so lucky for, so she got excellent attention um, she would constantly be restless. My mother never could settle in the spot angry, angry and restless, I would say it and she would wander around the home and the home eventually locked her in a room to protect her, which was terrible. But someone in the home was smart enough to figure out what she was restless for, and she was looking for the laundry room, because she had done so many loads of wash her whole life for 10 children that she wanted to do her laundry. And so the nurses parked her in the laundry room and gave her the same 10 towels to fold over and over again, and she was happy.

Barbara Corcoran:

It really made a big difference that somebody was on their feet and thinking, thank goodness they identified it, versus just keeping her locked up why that was or who that was. I should have really thanked them, but we were just so relieved I didn't really think that far, you know, yeah, but um, in hindsight we should have called the doctor her doctor. We only had to visit the doctor to make the diagnosis and then we were off on our own taking care of her. But we could have said, hey, there's something else going on, but we didn't know it. We just thought it was part of a typical dementia person, you know. And eventually she regressed to a much younger age, after being upset at the veins in her hands when she thought she was 23 and beautiful, after being upset that she couldn't find her children because my brother hadn't yet bought her a baby doll to take care of. Yeah, just she regressed, regressed, regressed, and then she died about two years after she was in the home.

Cathy:

Oh geez, yeah, my husband's grandpa had Alzheimer's and I remember visiting the Alzheimer's facility with my little at the time now he's 40, but he was only two years old and the lady was carrying around a baby but she kept sticking a bottle into my son's mouth saying he's hungry he's hungry he's hungry, feed him, feed him.

Cathy:

And then at one time she snuck a candy bar in his mouth. So and I had to say he's not hungry. You need to go ahead and eat the candy by yourself or give it to your baby. I wish you didn't shout at her.

Barbara Corcoran:

A lot of people would have shouted at her. Yeah, yeah, I bet your son wanted the candy bar. Why did you keep it for him?

Cathy:

Right, yeah, you're a mean mother to your son, I know it, yeah, so I think this is just fascinating because I'm starting to see commercials on TV now. Finally, about the agitation side of Alzheimer's. It should really be well known.

Barbara Corcoran:

The word has to get out there, because you know why? Because people do this journey on their own and they enclose themselves, and it's really meant to open the doors and get information. You know there's a there's a great website called recognize Alzheimers agitationcom. That's chock full of information that can make people feel like, oh, that's it. Oh, that's it, I mean when it applies cause. It applies to 50% of the cases, but people don't realize they have access to good information.

Cathy:

Right. So how long did your mom have the disease then? That, from when you went to the doctor until she passed away? Nine years exactly. Oh my gosh, it was a long nine years. It felt like a hundred years, right, yeah. And so I can't. Only, I know I have caregivers that are saying they feel frustrated, they feel resentment, they feel angry. I'm sure you felt that way. You're just the patient. You mean no, sure you felt that way, caregiver. So the patient you mean no, the caregiver felt that way. Oh, what advice would you have for a caregiver that is feeling this way with their loved one? I'm assuming they're in the early stages, where they're recognizing the issue, kind of like your sister was taking care of your mom.

Barbara Corcoran:

I think it's okay to be impatient. I mean, it's a human condition we all have, it's a hard disease to live with and impatience is okay. But I think where the line is crossed is when a caregiver verbally puts someone down. You know acts to put them down and fortunately we didn't have that because we had family caring for her and compassionate family. Yeah. But I have advised a number of my friends children, I don't like that caregiver, get rid of her. I mean I'm harsh, right Right, you can help what the tests are? How can I make it easy? How can I help you? But you can't change attitude.

Cathy:

I don't find you can never change it Right, because you can't blame the patient or the loved one, because it's the disease you know what else enters into that situation.

Barbara Corcoran:

I honestly think, kathy, I think there's some level of guilt toward the caregiver and mother, because the caregiver is taking care of the parent, which you might be paying for. So you're doing the best you can, doing the job you can. You may be working, but there's a sense always with me. It was a sense like shouldn't I be here all the time with her? Shouldn't it be me? So you tend to settle a little more than you should. I think I agree.

Cathy:

I just did a podcast episode that's my whole platform is. You know, you have to find, you have to be the manager of this caregiving journey. You can't do it all yourself and you have to go ahead and take care of yourself so you can give the quality of care to your loved one. Give the quality of care to your loved one and really treat, if you're the solo caregiver, treat that like your business and really saying how can I give the best possible care to my mother, how can I give the best possible care to my loved one? And being able to do that, yeah, I think.

Barbara Corcoran:

Uh, that's a good way of framing it, what you just said. I think too often it becomes someone's obsession and they're not taking care of themselves.

Cathy:

Very good point can you help us with? Let's say, you go to the doctor now and the doctor diagnoses your loved one with Alzheimer's, how can you, how can they be a better advocate in this journey, knowing that we probably because you had said we wish we would have been able to go ahead and be with meet with that doctor at least that's what I thought you had said more often, more often.

Barbara Corcoran:

Yeah, honestly, I don't think you could expect that from a medical doctor making the diagnosis. I think their job is to make the diagnosis. I think it's on the part of the family to say what resources do I have available to me? So far as insurance goes very important because it involves money. So far as resources to get assistance with home care, all that stuff, why invent it yourself? There's so much out there, but you got to push for that information. I think to get yourself educated as fast as you can, from as many sources as you can, is key. I think it makes all the difference.

Cathy:

So your brother T, when he went and got that education, I think that was probably the game changer for all of you, you all jumped right into action.

Barbara Corcoran:

We would have been explaining to my mother every two weeks for the rest of her life sorry, mommy, daddy's dead and watch her go through the morning versus T, who taught them to come into yours is key, I think, to changing the care for someone with Alzheimer's. Okay.

Cathy:

I did not know that. I'm fortunate enough not to have it, but you never know in this world.

Barbara Corcoran:

It's really good to have. You never know. It's right around the corner when you're not looking.

Cathy:

Right. I run for my life, yeah, and live in their world versus fighting them.

Barbara Corcoran:

and you know, doing that, that's a really good point, but I think a lot of illustration of another thing that I that we learned the lesson. I was with my brother, kitty, visiting my mother's together, and she said there's a, there's a snake under my bed, there's a snake under my bed. And I got on my hands and knees, had her helped her bend down and say see, there's no snake there, there's no snake there, mom. And she kept saying there's a snake under my bed, there's a snake under my bed. And my brother got down with the broom and killed the snake. And boy, was that a life lesson. And we followed that course of action every time with it to agree with what she saw because it was real to her, versus dismiss it, which was really what we were operating from. A dismissal attitude at first like no, you remember, mom, you remember we told you about you. And she didn't remember. No, because it was mean, mean for us to do that. We didn't see it, but it was, was me.

Cathy:

When you would dismiss it. What would happen? She?

Barbara Corcoran:

would persist. And then you had two grownups, because she's still a grownup, with her own dignity, and ourselves arguing over something. What, for? We weren't there to argue or to prove anything. We were there to make her feel good, right?

Cathy:

right, yeah, wow, that's so insightful, oh my gosh, so insightful. So, yeah, so I think the sending the caregivers to the, your, your site Now I heard from Aaron that you have I wish I knew Is that the the platform that you are trying to promote this awareness on that you are trying to?

Barbara Corcoran:

promote this awareness on? I am certainly, and the reason for that is whether we even had labels for it back when my mother was so sick. The fact of the matter is I wish I knew a lot more than I knew. We just took my brother's direction. We felt whole as a unit because we had so many of us protecting her. But I'm thinking of all the people that are on their own or with just one person and they should be saying I wish I knew or never saying I wish I knew, finding out what they don't know right now, because knowledge is power and knowledge is options and knowledge makes things better. Even holding hands with someone is a certain kind of emotional knowledge that you need help. So it's more of a collective we wish we knew. You know, with my family it was we wish we knew. But everybody they wish they knew. They should really wish they knew. I won't say it again Wish they knew.

Cathy:

It's silly as I say it. No, I have two more questions for you here and then I'm just going to let you do a closing piece here. And I think for me is if you had to tell a new caregiver and they walked in and they got that diagnosis and they kind of knew it was coming, what advice would you give them? I?

Barbara Corcoran:

know what I'd say when they start. I'd be very clear about what the expectation was, but in attitude I'd address it right up on the front side. I would say a number one job here is not to differ with my mother or my father, whoever's sick, not to differ with them. Whatever they say goes, you know you can insist that you care for them and do that. But whatever is in their imagination you agree with that's my key takeaway today.

Barbara Corcoran:

Because that's always so much of the angst. So much of the angst that's so unnecessary. Nobody wants to be a lady on that escalator in Bloomingdale scolding her mother.

Cathy:

So sad, it's sad, it's sad and I can, I can kind of relate to that and I kind of feel bad now with not knowing that, with my mom at the very end as well, you know, and and some of the things that she did in her two weeks of hospice care, if I would have just went with it and let her. Yeah, I think that's a good advice and it's so insightful, yeah, yeah. Now I want to end on a light note and a fun note.

Barbara Corcoran:

A light note.

Cathy:

Yes, what is your? What is something that you are most proud of in that caregiving journey with your mom and your family and helping your mom through those grueling last years of her life? But what made you most proud Most?

Barbara Corcoran:

proud spending the time. There were Sundays where it was my only day off. I was dog tied from traveling around the country because I traveled for a living and the last thing I wanted to do is get in a car and travel two and a half hours to visit my mother and there was never a visit that I'd say thank God I went, thank God I went. You don't know how long you're going to have somebody in your life, but I think I was proud that I put forward the effort and it takes a lot of effort. It really does Without a lot of return, but consummately there's a lot of return over the long haul.

Barbara Corcoran:

Because, you feel like you did the right thing.

Cathy:

Yeah, I call those Sunday fun days With my mom. As far as fun day, yeah. Yeah, with my mom. She wanted me to be with her all the time, all the time, and I'm like I can't, mom, I'm working, I'm running a business, I'm doing this, I'm doing that, but you know what? Sunday is our fun day.

Barbara Corcoran:

That's a great idea.

Cathy:

Did you remember that she did, and she had this agenda mapped out of all the things we were going to do on Sunday.

Barbara Corcoran:

Great, and you gave her the possibility of looking forward. How important is that? Yeah?

Cathy:

So that's just one of the.

Barbara Corcoran:

Yeah, yeah, you know most people who visit people in homes. You know what they say I'll see you, I'll see you. No conclusion as to when they'll see you.

Cathy:

Because they really don't have it in their head when they'll see you. Because they really don't have it in their head when they'll see you. Yeah, very smart. Yeah, we circled the days, my mom, but that's a good one. Yeah, we circled the day and she would write and and saying, we want to do this and we want to do that. And yeah, she definitely looked forward to it.

Barbara Corcoran:

So I'm going to make that my other piece of advice and not give you any credit.

Cathy:

I don't care that I'll be honored, no matter what. Well it is. It was a complete pleasure to meet you, and I have this fan crush because you have been heard that fan crush. I've been asked like by different people, if you could have five people go to dinner with you. Who would those five people be? Well, you're at the dinner table, good enough, you're going to make some pasta for me. You like your pasta and salad or what do you like.

Barbara Corcoran:

Any form of pasta. It's fattening.

Cathy:

I love it you are such a skinny lady anyway, so you probably can Believe me, I don't like being the skinny. Oh really.

Barbara Corcoran:

Oh yeah, that's what my mom was You're too fat when you get older. You don't have a choice.

Cathy:

I know I'm the other way. I'm the other way, I want to be the other way, so you don't want to wish the other way.

Barbara Corcoran:

I very often will leave a situation. A friend will say so. Andso was asking me, are you? Well, that's not a good thing.

Cathy:

You're a beautiful lady. You're a beautiful lady inside and out, so thank you.

Cathy:

I will do my best to promote this from my end and share the website that Aaron gave me. So I'm cheering you on behind the scenes and hoping to help other caregivers. Cheering you on behind the scenes and hoping to help other caregivers. I just started this four years ago, just putting going behind the mic, and I wanted to help other caregivers because You're so good at it. Nobody's paying attention to you. I know what I have to do. Yeah, well, maybe you'll help me get a little bit more traction now. Your name, well, okay, well, thank you very much. If I was there, I'd give you a hug.

Barbara Corcoran:

I don't know if you're a hugger or not, but thank you, I took a hug for me too. You look like a good one.

Cathy:

Well, thank you very, very much for your time and I look forward to going ahead and sharing your message. Thanks, Kathy, bye-bye, okay, bye now. Wow, what an incredible conversation we had today with Barbara Corcoran. I'd love to hear your thoughts. What did you think of her story? What insights did you glean from her conversations and the advice that she shared? I want you to think about your key takeaways and don't hesitate to hit that. Send Kathy a message button right in the show notes below and I'll share those next week on the podcast episode notes below and I'll share those next week on the podcast episode.

Cathy:

Here are some of my thoughts that stood out to me. I was deeply moved by Barbara's advice and it's sticking with me about never dismissing your loved one's thoughts, actions or emotions. Her story about the snake underneath the bed or her mom asking about where her husband her late husband was really reinforced the importance of meeting our loved ones where they are at, emotionally and mentally. Another beautiful moment was when Barbara referred to her mom as a love bug and dedicated time in her busy, busy life to be with her mom on Sundays, even when her mom didn't recognize her. It's a powerful reminder of love and patience that we need in caregiving. Barbara also emphasized the importance of education, just as her brother did, and how he pulled the family together and how significant that significant difference that made. If you personally want to learn more about Barbara's campaign to support her or help yourself when it comes to Alzheimer's, be sure to visit recognizealzheimeragitationcom, and I'll put that link in the show notes. It's a valuable resource for anyone caring for someone with Alzheimer's, dementia and experiencing agitation. This is just not something that has happened overnight, but it's taken a long time for us to get that education.

Cathy:

Thank you so much. To kind of conclude here, thank you so much for joining us on this very special episode of the Caregiver Cup podcast. Barbara's story is not only inspiring, but also packed with practical advice that can help so many of us navigate the challenges of caregiving. If you found this episode helpful, please hit that follow button, subscribe button, leave a review and share it with someone who might benefit from Barbara's insights. Don't forget to follow me on social media. I'm on Instagram @cathylynnvan Facebook at , and stay tuned in for more inspiring episodes and valuable tips. This is my fourth year going forward on the Caregiver Cup podcast. Until next time, my friend, take care of yourself and each other. I can't wait to bring you more amazing guests and stories in the future, and thank you for being part of the Caregiver Cup community. Bye for now, thank you, thank you, thank you.