Love is so powerful that it can move mountains, push someone to change careers, move across countries, or sacrifice a dream to be with your loved one. How beautiful it is to hear someone’s inspiring story about the things she can do for love. Today, Kristen Cusato, Director of Communications for the Connecticut Chapter of the Alzheimer’s Association, shares her journey in changing purpose through crisis for her best friend – her mom. Her world changed when her mother received a dementia diagnosis. Join Kristen as she shares her inspiring journey of love, loss, and the unexpected beauty of caregiving. Learn how crisis can ignite a passion to help others, and how finding meaning in the midst of difficulty can transform your life.
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Changing Purpose Through Crisis For The Ones You Love With Kristen Cusato
The things we do for love. Some change careers, move across the country or sacrifice a dream situation to be with the ones they love. Kristen Cusato is joining us to share how her purpose changed at an instant when her best friend, her mom, was diagnosed with Lewy Body Dementia. Kristen is passing on her mom’s legacy by educating and supporting families as a Director of Communications for the New England region at the Alzheimer’s Association Connecticut Chapter and is the New England Research Champion. Learn more about her journey, early science to be on the lookout for Alzheimer’s, and the support available to you as a caregiver. Open your heart to family members who might need your help and do the best you can to be there for them. Enjoy the show.
Welcome, Kristen, to the show. It’s great to see you. How are you doing?
I’m so good. Thank you so much for having me.
I’m so excited to dive in. It’s great to see you. Tell me a little bit about what you are passionate about.
Kristen’s Passion For Helping Caregivers
I am always passionate about helping caregivers with Alzheimer’s. It’s not just what I do. It’s who I am. I had a mom who was diagnosed with dementia at the age of 61. I learned so much and then started working for the Alzheimer’s Association. It’s always that someone will call and say, “My friend has this. Something’s going on in their family. Can they talk to you?” or I run into somebody at a restaurant or talk to somebody about it at a mammogram. I’ll talk about it anywhere. That’s really what I do and where the passion comes from, my mom and losing her so young.
Doing a podcast, I’m pretty excited about that. As we talk on a podcast, it’s really fun to delve in and find out information about people that you didn’t know with these little nuggets that you keep uncovering with people. I love that. That’s so fun. I’m also a huge music fan, so any sort of shows that come up,
I’m sorry about the loss of your mom. I’d love to hear more about what’s going on with your story. It’s amazing where we all come from and how we got to where we are. That’s a lot about this show. It’s to understand what are the things that have happened and what are you doing about it. I’m curious. How long ago was that when your mom fell ill?
Caring For A Mother With Dementia
I was a journalist my entire career, and then I was on television in San Diego, working at a TV station out there. My mom was living back here on the East Coast. She started having marbling mouth conversations and saying some things over and over again, and she was really down. I was hearing from relatives that she was falling a lot. I was hearing that she was leaving the garage door open all night or was not able to find her way back from a rotary meeting that she would go to every week.
My relatives took her to some neurology appointments and some different things. We got a diagnosis of dementia at the age of 61. I learned later that if you are diagnosed below the age of 65, it’s called younger-onset because most of the folks are diagnosed over the age of 65. With that diagnosis, it was not even a heartbeat of hesitation. I packed up fourteen boxes, gave away all the furniture from my apartment, grabbed my bicycle and my cat, and moved back east to be with her through the whole thing. That was in 2009. That’s when that whole thing started.
Caregiving is a bunch of different things. It’s hard, ugly, and painful, and you find the strength you didn’t know you had, but it has also got some beautiful moments, especially the moments towards the end when you connect with your person, their soul, and who they are before they leave this earth. It made me who I am.
Caregiving is a bunch of different things. It's hard. It's ugly and painful. But you can find strength you didn't know you had. Caregiving also has some really beautiful moments. Share on XDo you mind sharing any of those moments that really touched you?
Of course. My mom was quiet, but she was really powerful. She was strong and graceful and was doing HR for an entire county. She was president of that rotary club I was mentioning. She was my best friend. We have been best friends since I was born. She’d call me every year on my birthday at the exact time of my birth and say, “Happy birthday. This is the time I met my best friend.” I say, “Yes, it is.”
Later on in the disease process, she stopped talking because nothing was making sense. She’d say, “Something, 203 tree, whatever,” and couldn’t come up with the rest of the sentence. Eventually, she stopped talking altogether. That’s tough. You’re having a one-sided conversation with someone who always was so interactive. I can always bring her any issue, problem, or any chat that I need to. I’d bring it to her and we’d always work things out together.
Later on in the disease process, she hadn’t spoken for quite a while. I remember sitting with her. She was in a memory care facility, which is a family choice. Some people choose not to, but that’s what we chose because she kept falling and we wanted her to be around people versus being in our apartment or being in my house or something. She was young. She was 62. You still need that interaction.
I remember sitting with her. We were watching that double duo of fantastic shows, which are Jeopardy and Wheel of Fortune. I remember watching Wheel of Fortune with her. There were maybe two letters or something and then someone guessed the whole puzzle. I said, “Mom, can you believe that he guessed in two letters? That’s amazing.” She said, “Yes, it is.” I was like, “Words. She tuned in.”
A million years later, I’m still telling that story because it was that moment that proved to me that she was always and is always in there. The people who have this disease are always in there. Try to keep connecting with them and try to give them love. Keep giving that, and sometimes, you’ll get a little present like that.
That is a gift. Your connection sounds so beautiful.
Connecting Through A Medium
I still feel her. I talk to a friend of mine who’s a medium. Mom and I talk about once a year. I connect with her through this woman who’s a medium. Some people don’t believe it, but it’s amazing. Have you ever done that?
No. I’m fascinated by it. Can you share a little bit of how that works?
Sometimes, you’ll see these things or these movies where people go into the voice of the person. This girl who I know has had this gift for a long time. I started connecting with her probably five years or so after my mom passed away. We do it over Zoom. She looks at me and is like, “Your mom’s got a lot to say. It’s your mom who comes through,” and then she starts telling me things. She says, “Your mom says this. She talks about this.” I write as fast as I possibly can all these things. She’s like, “Now, she wants to talk about your brother. Now, she wants to talk about your work.” It’s so cool.
Whoever comes through comes through. It’s always mom for me, but a couple of years ago, a friend of mine lost her husband after a cancer diagnosis. They were like one human. They’ve been together for 50-something years. He came through and told me some things to share with his wife, and I did. I was like, “This whole thing blows my mind.” It makes me feel at peace knowing that Mom is with me all the time. It’s this beautiful spirit and presence that I feel all the time. It’s really cool.
I’m in awe of that. It’s beautiful. I imagine it helps you stay grounded. You know there’s something out there and she’s there, and she’s part of it. She’s part of this bigger being.
She is always with me. When you’re not sure, that, for sure, tells me that she is because she’ll say, “This, this, and this happened.” I’m like, “Yes, mom. You were there.”
That’s got to warm your heart.
It’s so cool.
How does somebody find someone who could connect them to a loved one that they lost?
You could look them up. You could look up medium. There are TV shows and stuff, but there are people who have websites and such. Everyone should have testimonials, like, “So and so helps me connect with this,” or, “So and so helps me connect with that.” It’s so cool.
I’ve done a mini-podcast. I called it Conversations with Cusato during COVID when we were all stuck in our homes. On Instagram, I would do “Instagram lives” with a bunch of my friends, different friends, because I have such cool, interesting friends. She was one of them. We were talking and I was like, “How did you find out that you had this?” She said she felt it for a while, but she wasn’t sure what it was, and then she knew it, but she couldn’t say it to anyone. She’d say, “I had a dream about your dad,” which wasn’t really a dream. The dad came to her and told her something. It’s amazing.
I believe it’s possible. It’s amazing. It’s incredible. I talk with folks who see signs and remind them of a lost loved one. It could be a red cardinal because it’s very spiritual to many. Some people find pennies or feathers. They find different things. We’ve talked in the past about pareidolias. These are forms of objects we see that have meaning to us as individuals which gives us such peace. It gives us a space where we can be and feel spiritual. Stay connected to our hearts and minds, and let that transcendence be.
That is so hard to do because we’re in a society where everything is so every second. Everyone has such short attention spans, me included. Sometimes, I wish I could throw the phone into the sea, but you need it to connect with other humans as well.
It’s all about connections. How did you get up to speed about the disease, and how did you get comfortable with it to the point where you’re really a voice?
Alzheimer’s Association
I’m the Communications Director for Connecticut and Rhode Island, the chapters of the Alzheimer’s Association. I’m at this cool part of my job called Research Champion. What I do and about 30 or so other people across the country from other chapters, because we’re under the national umbrella of the Alzheimer’s Association and there are a number of chapters in every state, is as a research champion, we’re schooled where we learn all the things that we’re funding. We learn about what direction we’re going in and what’s happening with the new medications. We learn all this great stuff, and then we connect with our local researchers who are funded. I go and share them. I’ve done this presentation about what’s happening locally in research to colleges, donors, different committees that we have, schools, and rotary clubs. It’s an opportunity to share what’s going on.
Since we have all these new things and there’s not only research into medications, which we finally have that changed the course of the disease versus symptomatic, we are talking about lifestyle interventions, exercise studies, studies about too much processed foods, studies about sleep, and all of these things that we weren’t really talking about like brain health. That’s critical because there are so many of us who have had parents who have this disease. Some of us are probably pretty worried about ourselves, like, “What can we do to reduce our risk?” There are things. That’s exciting. I love that part of my job, talking about research and chatting with everyone. We’re in this constant learning mode about what’s going on.
It’s really important to raise awareness. I feel like when a family gets this diagnosis, it is almost like being hit with a Mack Truck of Alzheimer’s or another form of dementia. There are people there to help put you back together. If you call the Alzheimer’s Association, we can help you and help put you back on that road and piece you together so you can start on the journey of this disease, however long your loved one lives. We don’t want people to do it alone. There are support groups, an 800 number, and classes you can take. There’s so much available. You don’t have to do it in a silo.
Where could they call? You mentioned that number.
The Alzheimer’s Association 24/7 helpline is (800) 272-3900. You can call at any time, day or night. You can call and say, “We got a diagnosis. Where do we start? Can I have an hour-long conversation with somebody?” We’re like, “Yes.” You could be like, “Do you know of any doctor’s offices in Newington?” We’re like, “Yes.” You could be like, “It’s 2:00 in the morning. My mom is at the front door with her bag saying she wants to go home, yet she lives here. How do I distract her and make sure that she’s feeling okay with this but keep her in the house and keep her safe?” Call that number with any questions. It’s great.
Thanks for sharing that. When you think about evolution and the journey, you’ve shared some concepts. Is there anything folks should be aware of in this day and age that there are certain treatments available? I know you mentioned a couple, but are there more specific details? I’m sure there are plenty of us out there reading that have parents or maybe worried about ourselves and about what we’re noticing about what’s showing up for us.
The Difference Between Normal Aging And Dementia
I appreciate the opportunity. There are a couple of things people need to know. Not everybody gets dementia. It’s a fatal brain disease, but not everyone gets this disease. It is really important to know the difference between normal aging and memory concerns that you should take to a doctor. That’s what we’re talking about. We’re talking about complete changes in behavior. It’s like if you could make a pot of coffee and then you can’t. It takes 42 steps to make a pot of coffee with all the things you have to do.
Alzheimer’s is a processing disease because things get in the brain that shouldn’t be there, like biomarkers, hallmarks of the disease like amyloid protein, tau, and different things that change the way your brain works. You see a change in behavior where you’re no longer able to do this. My mom was a to-the-penny checkbook person. Suddenly, she had cross-outs and math mistakes. She was cutting up credit cards saying, “I don’t want to pay this anymore.” I’m like, “That’s not how this goes. There are other ways we can cancel a credit card. Cutting it and leaving it on the stairwell is not going to work, Mom,” but she doesn’t know. She’s got this disease.
We have classes called “Know the 10 Signs.” How do you know when to take those concerns to a doctor and what doctor to go to first? It’s a general practitioner because they will go through and do a blood workup to see if it’s not something else. To throw a wrench into all of this, your memory concerns could be due to a B12 deficiency or you’ve got some medication mix-up, or you’re depressed. There are a lot of things that could be checked out to see if that’s it. You probably go to an expert and a specialist to find out if you have a type of dementia.
As far as younger people or people who are worried about themselves, it’s really doing those lifestyle interventions. We call them ten healthy habits. There is stuff that’s pretty basic stuff. It’s stuff that’s good for the heart, which is also good for the brain. It’s exercise. It’s cognitive and social stimulation. It’s learning something new. It’s playing Wordle, but also doing other word games at the same time to change up and do strategy. It’s learning an instrument and getting sleep. Sleep is so critical. There are all these different things that you can do to try to reduce your own risk. Part of it is up to us to incorporate these things before any sort of symptoms come out.
I appreciate you sharing all that and helping me and our audience be able to learn more and where to go to help ourselves, our family members, and people we know. I love what you shared earlier about how your mom was present. She was there but couldn’t communicate back the way you were used to. That’s so important because sometimes, we don’t know the effect we have on people or the effect that you have had on her. Moving away from San Diego and your career and changing your purpose, it seems like, to not only take care of her but help others take care of their loved ones like you did, what a way to set an example for everybody else. It’s amazing. I really appreciate that.
I feel like my mother, even though she couldn’t talk, the woman who lost her voice, was able to give me license to use my voice to tell her story, to help others tell their stories, and to really make sure the word is spread about the fact that you don’t have to go through this journey alone.
You’re carrying her legacy on. Her voice is coming to you through someone else. You’re carrying this voice on and it’s going to other families. You’re truly having this ripple effect. You might know that or not. It’s a beautiful thing. You’re leading the way, which is something to think about, especially for folks that get to this point where you have this life purpose, and then all of a sudden, it changed. It seemed like your purpose had changed quite instantly.
Changing Purpose Through Crisis
It’s so bizarre because I was 40 years old. I remember this. I was on my way to a shoot with my photographer in San Diego. I’m driving along and I’m talking to my brother back here on the east coast. I said, “I’m 40. What does this mean? What is my purpose? What is my purpose in life?” A couple of months later, my mother’s diagnosis came flying into our lives. That became my purpose. Be careful what you ask for. Be careful what you wish for. I was happy I wasn’t married and I didn’t have children because I was able to do that. Not everyone is able to drop their entire life and do that, but I was lucky I was in the position that I could.
You were accepting of it. You have your best friend and your connection with your mom. That helped you get back here, which is great. Do you ever go back in different ways to continue that work as far as being in the media or in communications? I know you’ve done a lot of different roles. I’m curious how you keep up with that because you seem very good at it. I’ve talked with you in different venues in Connecticut. You have such a way about you.
You’re very nice. Thank you. I still represent the Alzheimer’s Association in a number of different places and media, radio, newspaper, and TV. My job is also to get other people up to speed so that they can share their stories in sound bites, the way the media likes it. I know because I used to be in the media. I know how it has got to be short and sweet but really important and poignant. Those soundbites have to be important to share.
The media hits are usually only about three and a half minutes long, so you don’t have a lot of time. I help get people ready for that. I do that. The podcast is very exciting. I’m doing some storytelling. I love storytelling. That’s really fun. Getting into telling some stories, I went to New York City and did a Moth StorySLAM. Have you gone to The Moth?
I haven’t. I’ve heard about it. Tell us more about that.
It’s super cool. It’s more of a storytelling. It’s less TED Talk-y. With TED Talk, there’s got to be some basic stuff. There’s got to be some science. It’s an idea worth sharing. The Moths are stories. You go to a Moth and you can put your name in a hat and see if they choose you to tell your story in under five minutes about the topic at hand. It’s cool to experiment with storytelling with the Moth. There’s a big Moth event. It’s sold out, but it’s coming in fall 2024 in New Haven.
Are you going?
Yeah. There are different storytelling things. There was one in Danbury. There was one in Westport. There are different ways to share your story. I’m still on the TEDx Hartford team. I’m on their team. I was coaching different speakers for quite a while, our mutual friend Brent being one of them. I’m on the team for a little bit of coaching but also helping market, get the word out, and stuff like that. That’s fun.
In short, what tips would you give folks about communication in general? If someone were looking to create a story, is there a quick path? Can people hire you to get some ongoing support and advice?
Thank you. I would love to be a coach to help people tell their stories. Hook up with me on LinkedIn. That’d be great. You know this because you’re pretty authentic. You’re authentic from minute one when you start talking to somebody. Eye contact is critical and the no BS-ing around. You’re who you are. You’re pretty honest. That’s really important when you come forward to meeting people in communication and also asking a lot of questions.
I have a friend who asks a lot of questions. I used to ask a lot of questions as a reporter. All my girlfriends and guy friends would be like, “Here’s the new person I’m dating. Be careful. You’re going to get the treatment from Kristen because she’s going to run down every bit of your life. We’ll see in an hour.” I’m like, “I’m going to go over here to make sure this person is cool and find out there’s scoop. Did you know this and this? They’re like, “No. I started dating them.” I’m like, “Make sure you know that.” I have a friend who asks a lot of questions. It’s important to make sure that you ask a lot of questions but also listen.
Here’s something really cool to share with you. When I am with my medium friend, my mother sometimes has these amazing nuggets that she’ll say through my medium friend. She said to me about communication, “Never speak louder than the person who needs to be heard.” Try to remember not to interrupt and to not talk your story over someone else’s story if that’s the venue you’re at. Let that person vent. Let that person share because that’s where that connection happens. It was pretty special.
It’s that space. What’s ironic is you coach Brent Robertson and he is all about listening and his experience with his mom.
I know.
I’m sure you two created a lot of space for you two to bounce around these ideas and allowed each other to hear what’s so special about those stories. Your stories are somewhat similar in the connection.
It’s important to also hear people. I could listen to people and then say, “That’s a good way to start your story.” You’re like, “It happened later on.” I’m like, “It doesn’t always have to be chronological. You can start with this moment or build up to a mic drop moment.” There are different ways to storytell and practice. Practice on your friends. Practice in the mirror. Watch your tone. You can also use the level of your voice.
You can use your hands. I’m Italian and I can’t stop using my hands. You use your body language. You step forward, lean, and gesture. There are a lot of different ways you can use it. Use the power of the pause. I’m huge on that even though it doesn’t seem like I use it a lot. It’s very important for people to use it so that whatever you say can soak in.
Your pause is natural too.
With a TED Talk, 14 to 18 minutes is the sweet spot. Sometimes, when you go for that long talking, it seems like you’re droning on and on. If you pause, multiple things can happen in this pause. It’s this beautiful thing where you stop talking, and if someone whose mind went somewhere else for a minute, they’ll go, “There’s no more noise coming from that person. Maybe I should look up,” or, “Maybe I should refocus and pay attention,” or, “Did I hear that right? I want to hear that again.” There are all sorts of cool things that can happen at that moment. That’s where some of the magic happens. It’s the pause.
TEDx, that experience has to be pretty incredible too. I hear it’s a lot of work. Is it a lot of fun too?
Yeah. I started volunteering for TEDx in San Diego. I was on the TEDx San Diego team. I went up to these people and was like, “I want to help. I want to do something. I want to volunteer. I don’t care.” The first year, I was escorting people from downstairs to the stage when they were getting ready to go on. The second year, I was the voice of a goddess, and then I went into speaker coaching out there.
I then came here, jumped in and attacked Lee and Laura who are in charge of TEDx Hartford, and said, “I did this in San Diego. Do you have any space? Do you need me? I would love to do anything. I’d love to volunteer and get back involved.” That was 2019. 2020 jumped in the COVID situation. It’s a really cool experience. It’s all year. You work on it all year. For a talk in December, people apply in maybe February or March. They go through some interviews, and then they pick people.
They announce roughly in June, and then they match the person with a coach. Those two people spend their time, whatever works for them, crafting this story and making sure it’s backed up. They make sure it makes sense and get to the point where it’s going to be an awesome talk that people are talking about when they leave.
You do good work because Brent Robertson with the listening talk, you guys are quite the team. I know you did a really fun sit session at the end of 2023, showcasing what a good team you are. We won’t go there. Another generative listening platform that he has, I don’t know if you know this, is one of the top programs on Vistage worldwide. He is being asked to come into so many Vistage committee meetings to talk about how we listen better and differently, especially as leaders. It’s phenomenal the work he’s doing. You’re a part of that. You have to feel good about it too.
Thank you. Brent is very talented on his own. He is traveling all over doing this. This is so cool.
It’s pretty cool. You talked about music. Do you have any favorite songs? Do you have favorite groups? I’m curious why. What shows up for you?
Music
Sometimes, I reference that mom used to sing Harmony in the car on long trips. Her favorite musician back in the day. My parents listen to The Carpenters and The Righteous Brothers. My mom really loved Chuck Mangione, which is that horn. Singing with her and listening to her sing. I was a drummer in high school. I was in the marching band with the big Q-tip hat. I love it, and I love it now even more than ever. I go on a rock and roll cruise every year. I go to different festivals. I see as much music as I possibly can and love it. I love Matt Nathanson. I don’t know if you’ve heard of him.
What type of music is his music?
Folky but rocky. He is a singer-songwriter-ish. His song is Come On Get Higher. That was his one huge hit. I love Switchfoot. They’re a band out of San Diego. They’re amazing.
Does it bring you to a different state of mind?
You don’t have to worry about anything else. You’re in the moment with all these people who also love the music and who are also moving to it and are feeling it. It’s a great escape, but it’s also a great connector. There are a number of times I’ve cried listening to music and getting chills. I love it.
Music is a great escape, but it's also a great connector. Share on XI love it too. I also recognize there are moments where I’ve listened to songs over and over again, and depending on where I’m at in life, there are different meanings, different emotions, and different connections back to my parents or other memories I’ve had. I love your story with your parents that they sing the songs together. I always hold those and cherish those moments.
I like the lyricists. I like people who are writing really good songs. I’m not into as much of the new stuff, but the Indigo Girls are great songwriters. It’s folks like that. Sarah McLaughlin is going on tour. I can’t believe it. This is 30 years after her amazing albums that I used to listen to in the late ‘90s. It’s good stuff.
Is there anything else you’d want to share with the audience? I know we’ve shared quite a bit about your story, your impact, your purpose, and what you’re up to these days. Is there anything else that’s showing up that’s on top of your mind that you want to share?
I’ve had some friends and family going through some stuff. Try to be there for your people. That’s where you find your purpose. It is being there and being a good friend or being a good supporter. It goes back to talking about dementia. A lot of us have heavy stuff. People have heavy stuff that they’re going through. Be with them.
You don’t have to go through it alone. Reach out and make sure that you can lean on people. Make sure you have your village around you when something happens. We were talking about this before. Enjoy every moment. Try to revel in those positive, beautiful moments that you see and encounter because life is tough. Try to be there for each other. I so appreciate you having me on because this is a really nice, open conversation. I appreciate it.
Enjoy every moment. Revel in those positive, beautiful moments you see and encounter because life is tough. Just be there for each other. Share on XI really appreciate you. I appreciate all that you’re doing for families that recognize what you’ve gone through. You’re sharing it, so hopefully, it’s easier for the next family to understand, recognize, and make it a process that people can cherish for the rest of their lives while we’re here together. I admire everything you’re doing. I appreciate your guidance over time. I look forward to continuing our friendship.
Thank you. I appreciate it.
Thank you.
Important Links
- Alzheimer’s Association Connecticut Chapter
- Speaking of Alzheimer’s Podcast
- Instagram – Kristen Cusato
- LinkedIn – Kristen Cusato
- https://www.Alz.org/
- https://www.Alz.org/abam/overview.asp#:~:text=June%20Is,Awareness%20Month&text=Worldwide%2C%20more%20than%2055%20million
- Brent Robertson’s TEDxHartford Talk – Listening Our Future Into Existence
About Kristen Cusato
Kristen Cusato spent more than 20 years as a television journalist, in New York, Texas, Connecticut and California. Her mother’s diagnosis of Lewy Body Dementia in 2009 changed everything. Kristen moved from San Diego to New York to help her best friend – her Mom – on this difficult journey. Kristen worked for the Connecticut chapter of the Alzheimer’s Association while her Mom was ill, sharing what she was learning as a caregiver, and teaching people about this disease. Her Mom passed at the age of 65. Now Kristen is Director of Communications for the Connecticut Chapter and also a Research Champion for the New England Region. Her goal is to spread awareness of the disease, share the services the chapter offers those with the disease and caregivers and educate about research towards new treatments and a cure.
