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No Barriers Podcast Episode 71: Heather Zoccali – Caring for Caregivers



Our No Barriers hosts, Erik and Dave, catch up with Heather Zoccali as part of our sponsored Alchemy Series. Heather has long been a leader in our No Barriers community. She heads our Caregivers Program: a curriculum-based program of transformative workshops, retreats and expeditions designed to improve the lives of family caregivers. And Heather knows firsthand the stress and isolation that comes with being a caregiver. She was thrust into the role as a child and then again experienced tragedy in her adult life when her son, Connor, was in a vehicle-pedestrian accident that led to a Spinal Cord injury that put him in a wheelchair. But Heather is the ultimate Alchemist. Her attitude and mindset have helped her to be strong in the face of adversity and to turn her pain into action that benefits those around her.

A continuation of our Alchemy Series, sponsored by Wells Fargo and Prudential, we speak to Heather Zoccali. Heather hails from Kentucky and has made Colorado her home since 2002. Heather taught dance in public schools but personal tragedies in her life led her in a new direction. Heather found that caregivers were often a forgotten part of the rehabilitation and recovery process and needed opportunities to practice self-care. With that in mind, she founded The Arch Foundation in 2017, to help bridge that gap and provide caregivers with resources.

She has since been honored as a Colorado State University Hometown Hero, as Rookie of the Year for Volunteer Disaster Aid Work with The American Red Cross, and received a Tribute from the State of Colorado for her pioneering work for Family Caregivers. Heather firmly believes in the notion that a broken spirit grows back stronger in the face of tremendous life challenges and lives her life accordingly.
She continues to live in Fort Collins, CO with her husband Matt and her two sons, Connor & Max, and now with her mother ‘Nana.’

Additional Resources:

No Barriers Caregiver Program
No Barriers Caregiver Resources
No Barriers Caregivers Facebook Group (Private)
AARP
Elizabeth Dole Foundation
National Caregiver Alliance
Aging and Disability Resources Centers

 

 

 


“We are all capable of the choice to forgive, the choice to find magic in the world – especially at times when it seems near-impossible – and last but surely not least, the choice to be happy and find within yourself a resilience that we all possess.”


 

 

 

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Episode Transcript

Heather : Caregivers have to get to that self identify, right? So, then they realize, "Okay, this is why I'm so stressed," or, "This is why I'm depressed." Start setting up boundaries to begin with. I need 10 minutes a day. A lot of caregivers have guilt over self care and you feel like you have to be there 24/7, but in order to be a good caregiver, you have to take those moments or otherwise, it just goes horrible.

Erik: It's easy to talk about the successes, but what doesn't get talked about enough is the struggle. My name is Eric Winemer. I've gotten the chance to ascend Mount Everest, to climb the tallest mountain in every continent, to kayak the Grand Canyon and I happen to be blind. It's been a struggle to live what I call a no barriers life. To define it, to push the parameters of what it means and part of the equation is diving into the learning process and trying to aluminate the universal elements that exist along the way. An unexplored terrain between those dark places we find ourselves in. In the summit exists a map. That map, that way forward is what we call No Barriers.

Dave : Today we speak with Heather Zocalo. Heather taught dance in public schools, but personal tragedies in her life, including a vehicle pedestrian accident that left her eldest son Connor with a severe spinal cord injury, led her in a new direction. Heather found that caregivers were often a forgotten part of the rehabilitation and recovery process and needed opportunities to practice self care. With that in mind, she founded the Arch Foundation in 2017 to help bridge that gap and provide caregivers with resources. She has since been honored as a Colorado State University hometown hero, as Rookie Of The Year for Volunteer Disaster Aid Work with the American Red Cross and she received a tribute from the State of Colorado for her pioneering work for family caregivers. Heather firmly believes in the notion that a broken spirit grows back stronger in the face of tremendous life challenges and she lives her life according. Enjoy the conversation.

Dave : Welcome to our weekly No Barriers Podcast series, where we continue to explore this extraordinary moment in our lives while remaining true to the theme we've always emphasized, which is what's within you is stronger than what's in your way. Special thanks to Prudential and Wells Fargo for their generous support of this podcast series. Well, Eric, welcome back. It's another great conversation. Heather, welcome to the show.

Heather : Hey you all. How's it going? Thanks for having me. I appreciate it. Excited to have a conversation with you all.

Dave : I thought I'd kick us off. Just I wanted to... I know that one of the things we're going to be talking to you about today, Heather, is about caregivers and the role that they play in society and how we can support them and so, before we get into all that, just a super basic thing. What is a caregiver in the context of today's conversation? What does that even mean?

Heather : So, we're talking about family caregivers and the definition, it's an unpaid family member that cares for people living with a disability, chronic mental illness, aging disorder and so, that's what we're talking about. We're not talking about a proper caregiver and that's someone who is a nurse or a CNA. These are family members that care for a loved one. There's actually new research out. There's 53 million family caregivers in the US and 3 million youth caregivers and a youth caregiver is someone that's eight to 18 years old that's the primary caregiver and they can have a secondary caregiver and often they are in the dark and no one thinks of them and they're the ones that help get everybody to all those amazing moments. They are in the shadows a lot. 40 to 60% of caregivers have major depression and that doesn't get dealt with because they're worrying about the other people that they take care of. So, it's definitely something out there that we need to keep bringing the light to and giving them support-

Dave : And in the spirit of bringing that light, can you tell us, you mentioned depression. Tell us what some of the things that caregivers really struggle with and maybe unite around in terms of those struggles.

Heather : Oh goodness. I think the biggest thing that we hear over and over and over is loss of self. You ask them, like I don't know who I am anymore. I look in the mirror, I do not recognize this person anymore. That's the biggest, common theme that we hear and then the other is just, I mean the average caregiver juggles 23 hours of caregiving on top of everything else and so, let's say you have a 40 hour a week job and then you have friendships that you're trying to keep, relationships. You have other kids and then you have your marriage and then you add the caregiving on top of it.

Heather : So, it can just be completely overwhelming and yourself, most typical caregivers have themselves at the end of that list and we talk about it all the time, you got to take care of yourself before you take care of everybody else because you're going to run out and usually it's when people are running out of that steam is when they're really like, "Oh my God. I can't handle this anymore." The every day stresses dealing with insurance, dealing with the financial part of it is super stressful. Let's say you have somebody in our situation. The wheelchairs cost $7,000. The catheters every month are $6,000 and that's just two things that they're dealing with financially. So, finance is a big one. Not enough time, loss of self.

Erik: My buddy's taking care of his dad right now. His dad's 90 and I'm always encouraging him, "Dude, you got to get outside," right? You got to take a walk. You got to ride a bike. You got to go walk on the beach with your dog and he's like, "Eric, I can't do any of this stuff. My dad needs," as you said, 24 hour attention. He'll wander outside. he'll fall down the stairs. I can't leave him for a minute. I can't work. I can't do anything, right? So I mean, I know we're diving right into it, but how do you find any sense of self or balance?

Heather : That's the trick, right? I think you have to, first, caregivers have to get to that self identify, right? So, then they realize, "Okay, this is why I'm so stressed out. This is why I'm depressed." Start setting up boundaries to begin with. I need 10 minutes a day and unless the house is burning down, you do not interrupt. I'm in my room unless I hear someone say there's blood and bones or fire. It's my time and you really start sticking to that and that's the first small step I give people that are like, "I don't know how to do it. I'm not sure. I feel guilty," and then I'd say, "You really need to give yourself permission. It's okay to take care of you and it's okay to let all that guilt [crosstalk 00:07:14] go. Just try it for 10 minutes." So, that's usually the first step I give people.

Heather : And if they're past that and already doing that and looking for other things, community is a huge one. Let's find your rope team, so to speak, because you need people that get it and speak that language and talk about, that you can go, "Oh my God, I want to push my kid out the door right now," and they won't think you're horrible or you're like, "I'm so sick of cleaning up pee and poo," or just, "I want to [inaudible 00:07:47] take me away," type of moment and it's that safe space. So, finding other caregivers that you can connect with either online or in person and just having those folks that get it because it's hard to describe it if you're not in the thick of it. Those two things are the first like you feel human again and you're like, "Wait, okay. I can do this. There are people that get it. I'm not alone," and then from there you just seem to build on it, but those are the first two steps.

Erik: You're an expert in this area, but you're not necessarily an extrovert by choice, right? I mean, you've been thrust into this in so many ways, right? I read that you were a caregiver from nine years old, right? And then with your son and then with your dad and then your mom. I mean, so yeah. Tell us a bit about your history and your past and how you got pulled into this arena.

Heather : Yeah. It's not the chosen profession, right? You don't wake up as a nine year old and go, "Oh, I can't wait to be a youth caregiver." My father at 32 had a major stroke and he was paralyzed on his left side and my dad was this big guy, 6'2, the Southern character, big [inaudible 00:09:01]. Everybody knew him and he was the hero in our lives to begin with and so, all of a sudden it was just this drastic change in our lives. I knew nothing was ever going to be the same after that and then my mom had to go back to work. She stayed at home and so, a lot of the daily therapy, like putting Legos together for dad and all this stuff, they just handed to me. It just happened that way.

Heather : It wasn't an official, "Hey, this is how you're going to do it. This, that." It just was like, "There you go," and with that stroke came a lot of behavior, like dad's emotional part of the brain got hit and he was a five year old, basically. Five, six year old. So, then you have not only that physical, which is super hard, but you also had the emotional part that goes in, which I think every caregiver has to deal with that and so, dad went from being a sweet, lovable guy to all of a sudden, we would see plates being thrown across the room if he was upset and you're like, "Ah! Duck!" And I mean, I say that jokingly, but it was like that and the next second he was really loving, the next second he was crying. And so, as you're a nine year old trying to wrap your brain around all that and my family didn't talk about stuff.

Erik: I can't image that. I mean, well I can imagine that, but I mean so, obviously there's all the work that you have to adjust to and changes, but there's that person who has changed in so many ways. A nine year old kid is not equipped to deal with this dad who was one thing and then the next minute he's a different thing. That seems, to me, just incredibly challenging.

Heather : Yeah. I don't know. There's so many things caregivers go through. You have grief and loss, right? Because you've lost the whole world you had envisioned for yourself. You lose your dreams for yourself and then also the dreams that were lost for that person that you care for are gone. So, it's a double whammy.

Erik: And then you fast forward to being a mom and then what happened with Connor? If you don't mind.

Heather : Yeah. Fast forward to Connor bug, March 10th, 2015 and I look back and it's so crazy. We were having what you would say a typical teenage mother fight where I didn't think he was living up to his potential and he was just really mad at me for even going there and normally if we were having that kind of fight, when he left, we would always say, "I love you and make good choices." It's just what we did because I didn't really have that. So, I wanted to make sure the boys all knew I loved him and even if we were fighting and I did not say it that morning and he got out the door before I could go and then I'd had a really bad headache that morning and so, I went to go lay down and I remember hearing tons of sirens.

Heather : And I was like, "Man, I hope whoever that is, is okay," and back then, I never had my phone charged. So, my phone didn't have batteries, to make it even better and then all of a sudden, probably five minutes later, my husband comes screeching in and slamming the door. He's like, "Why aren't you answering your phone?" And I was like, "I had a headache. The phone's not on," and he's like, "Connor's been in a serious," as they just put it, a vehicle versus pedestrian accident and he's in critical condition down at MCR Medical Center of the Rockies and so, it hit me first of all, "Oh my God. I hope those weren't the last words we said," and then second, "Those sirens. That was Connor." And so, I said, "Okay, let's just go," and Matt and I were obviously in a little bit of shock and when I called the care, I'm blanking on the word. They're like caseworker.

Heather : She wouldn't give me any information over the phone. She just said, "You need to get here. He's in critical condition," and Matt and I just both looked at each other and we're like, "Oh my God, the fight. The fight this morning," and I said, "Please just don't let that be the last thing that we say to each other." And so, we walk in and he takes us into what I call, has always been, seemed to be the room of doom, nothing good ever comes out of going in that room and the ER doctor was like, "Look, I'm just going to shoot it to you straight. His legs aren't working. We don't know if they will. We've got to get him into surgery," and when I finally get to see Connor, he's like, "Mom, I was trying to call you. Can you please forgive me for this morning? I was a horrible son."

Heather : And he's like, "I was an asshole," and I was like, "Oh my God, Connor. Don't even. That's the last [crosstalk 00:13:47]," and I'm like, "Oh my God, I'm sorry." And I was like, "Look, we both said it. We weren't kind to each other this morning and we got to let that go. You're here now. You're with me." And I said, "Look, life is obviously going to look different, but we're going to get back out there and we're going to do everything we did before and have a badass life." And he looked at me and then he said, "Can you fix my legs?"

Heather : And that still was like, "Oh." Because as a parent, you're supposed to be able to fix stuff, right? For your children. And I had to look at him and all the doctors and nurses were all kind of that audible gasp when he said that. And I was like, "I can't. I cannot fix your legs, but I'll be here and when you get out of this, I'll be right beside you the whole way to try to make it as easy as possible for us to get through this and I just got to promise we're going to have a kick ass life. Not that it's not going to be hard, but I'll be there."

Heather : Two months to rehab, relearning everything. That's brutal watching your child have to relearn absolutely everything and then realize personal care is changed forever down the road. Not sure about sex life, all that and you're the one that's there 24/7 for two months. So, you get hit with the anger and the tears that you have to dodge for him and then you're dealing with your own grief and loss and then you're dealing with guilt too, especially in a place like Craig, because we were lucky with Connor, really. He was waist down and had his arms and could breathe. He didn't have to have a ventilator. All of that. So, I don't know. It was just a crazy, floral, different than dad, but that same you have grief, you have loss of dreams. You realize your life has changed. I'm like, "I'm not working anymore. I'm taking care of him full-time."

Dave : Tell us a little bit more about your life and how that changed your life since we're focusing here on the caregiver experience. How did that immediately impact your life forever?

Heather : Yeah, Dave. That's a good question. Super common theme of a lot of caregivers, if it's a drastic change like that, an accident or something that happens, we had Max at home with Matt and they stayed home because I didn't want it to super. It obviously interrupted his life, but I wanted him to carry on as normal as possible, quote unquote. And then for me, I had to immediately not... I used to teach dance in schools and English lessons in movement or math through movement and I couldn't do that anymore because I knew I had to go down and spend two months with him. And then once I was down there, I realized, "Wow, this is full time. I have to give up whatever that career and then take care of him full time."

Heather : And so, that's the reality of a lot of care workers. You're now home taking care and you don't have that other self identity. A lot of us identify with our work, right? That's what you do. And maybe you're proud of it or you just do it to get by. And so, that's ripped away from you in an instant. And so, I'm like, "Okay."

Erik: So, I'm learning a lot as a parent and as a husband about the power of parenthood and the love and the guilt. When I was a kid, I remember going to the doctors up in Boston and they said, "Hey, your disease. Your blindness is a hereditary disease and it's brought on by this X chromosome by your mom." And so, we're at lunch later and I was just totally kidding around. I was like, "Yeah, thanks mom for passing on that gene to me." And she bursts out crying and I had no clue what I was doing blundering into that, right? But I was touching mom's guilt. So, do you just have to live with that or is there a way to work through that, if that is the case in your situation? I mean, it's zero. It's nothing you did, right? But still I imagine that guilt just lingers. I don't know.

Heather : Yeah. Eric, you do and I think more than anything is that I wish it would have been me and-

Erik: You want to take it on.

Heather : Yeah and you can't.

Dave : I wonder if on this topic of guilt, in your particular case, the guilt of, gosh, could this have been me? Could I have done something differently? But there's also then this guilt, I think of you just wanting to have your own freaking life and not always be surrounded by having to take care of your son. You love him so much, obviously, but there's a guilt that comes with wanting to have your own sense of self.

Heather : Yeah, totally. And to be honest, 100% I feel like right now, I feel like sometimes as a caregiver and a human, you just have to embrace the suck, is what I like to say. Yeah. It's sucky to feel guilty. Right now sucks. There's nothing I can do to get out of it and just you have to go there and I think with me, I am such an emotional person, that Dave with that, and every caregiver goes through it, but I'll just take, I think I had told you before, three days and just feel horrible and angry and sad and guilty and all that. Just go to the depths of mortar like we're choking and really own that. Be like, "Man, I feel guilty that I'm going to start a foundation and it's not for Connor. It's for caregivers."

Heather : That was a big one. Oh, what are people going to think? And then I was like, "Ah, let that go." Take three days. Just feel it all and then blew it and on the fourth day, I usually, I like to write and what is vomit writing and then I love boxing and I'll just punch it out physically and then get it out emotionally during those few days. Cry, scream, throw rocks, do whatever you need to do and so, that's how I deal with it, Dave. But I know a lot of caregivers have guilt over self care and you feel like you have to be there 24/7, but in order to be a good caregiver, you have to take those moments or otherwise it just goes horrible. And then you have guilt too. Like, okay, am I giving my younger kiddo enough time?

Heather : Because Max had said at one point he was really mad. I know he'd gotten the leadership award and I looked at him and I said, "I'm so proud of you keeping it all together." That was super dumb on me to say that now back, and he said, "Mom, I just feel like a fucking ghost in this house right now." And I was like, "Oh, dang it. That's not good." But then on the flip side, I said, "You know what, max? I'm really proud of you for being open and being able to say that to me because now I know where you're at. I can't read your mind and I wouldn't have known that."

Heather : And so then I started making a date night with me and him, just me and him and we would not talk about Connor. And then I asked my friends, I said, "Hey, when you come into the house, can you please ask Max first how's he doing? What's he got going on? And then you can ask me," right? Like, okay, I could use some of that love and then ask about Connor and that's not to be mean or anything. That's just to flip it around a little bit so that those other people bring a little bit of light to them and let them know hey, I see you. I hear you. I got you.

Erik: Yeah. So, we hit all of that. It's so many heavy subjects. We've talked about depression and guilt and what about anger? Because I mean, as a mom, you want to kill this guy who hits your son, right? I mean, there must just be a fierce anger at first and I know you've worked through that and you've done stuff with, is it called Impact? I think-

Heather : The Restorative Justice Program.

Erik: Yeah. So, talk about the process of anger.

Heather : The anger comes, for me, it leads to forgiveness. I knew I had some forgiveness work in the past that I think led me to that. In order for me to model this for the boys, show you can find some light in this and be able to move on and release it. I had to have two types of forgiveness, self forgiveness, which is super hard for me and then forgiveness of the person that blew up our lives and blew up Connor's life, changed it drastically forever.

Erik: And you joined that program, right? The Restorative Justice Program and you actually got the perpetrator, Reggie? I believe and you guys do some work together or did some work together.

Heather : So, I had written early on that I had hoped two lives would become better instead of two lives become worse, meaning that the man that hit Connor and Connor and Restorative Justice had somehow ran that and reached out and said, "Hey, I read that. If you're ever interested, we have a program," and I was like, "Oh, what's Restorative Justice?" And they said, "Well, it's where if you're open to it, you can meet the man that hit Connor." It took me two years, Eric, to get there. Two years too... I wanted to wait and see if he was going to be better and improve his life, which we knew through the Pearl and how they gave us updates and stuff that, yeah, he was. He was off of any substances. He was trying to see his kids again, all that. And so, I was like, you know what?

Heather : He's trying to be better and in order for me to really let this go and move on with my life, I feel like I'm ready for this. And I went to Connor and I said, "Can I have your blessing to do this? You're welcome to join me." I knew it was going to be no, but I put it out there and he said, "Yeah, mom." He's like, "I know that's big to you and so, go ahead and do it." And so, Connor giving me the grace, first of all, was awesome and then going in there, I felt really good about like yeah, I'm going to be able to forgive him. It seemed like there wasn't a lot of forgiveness for Reggie for anything. And so, to me it felt like maybe if he receives this from me, he'll be able to move on too and be better.

Heather : So, we get in and see him, meet him and you get to have a support person. And my friend Tamra was my support person. And he had brought a good friend of his and they said, "Heather, take the floor. You get the first talk," and I just said, "Look, I want you to know that I forgive you. I forgive you, but I want you to be better. I want you to be better than that day. You left Connor on the side of the road. Everyday you get up to walk and kids go to the bathroom with ease, see your kids run around. I want you to remember today I'm going to be better." I'm like, "You're going to fail at it. We all fail at it. I try. I fail every day, but you need to forgive yourself and I need you to know that I forgive you and I want you to just be better."

Heather : And I said, "I'm trying to be better and I'm hoping together we can both make the world a little bit of a better place." And I remember, and it felt so good to say that. For me, I was able to be like, "Oh, God, just take it universe." And Reggie looked at me and he started crying and he was like, "Well, I don't understand why you're doing this. I thought you were going to come in and cuss me out. I don't deserve it." And I was like, "You do, because I'm giving it to you and you've done better since you got out. So, let's do this together," and then it was a really cool process of, and that's crazy to say, right?

Heather : It was cool to talk to the guy that paralyzed my son forever, but it was this beautiful moment of shared understanding between us. I was trying to understand him. He was trying to understand me. He asked all about, talk to me about being paralyzed. And he's like, "Oh my God, I didn't have any idea that people who are paralyzed can't go to the bathrooms by themselves. You have to look for bedsores, you have to do all this stuff." And he was super inquisitive, which I found, I was really appreciative myself of that, for him to care and want to know what is it that I did do? And I had no idea that one mistake caused all those ripple effects and completely changed her life. And so afterwards I hugged them and I said, "Look, like I said, we're both going to make this pack to be better together."

Heather : And it felt, like I said, it was just this really beautiful moment that if you'd have told me two years beforehand I would be sitting across from the guy that paralyzed Connor and left him on that cold ground alone and that it would be one of the most powerful moments of my life, I don't know if I would have believed you. But it was. It is and now I know for a while he was going and talking to parolees about the impact that crime can have and if you can meet with the person that you injured, it would be worth it. And then I've spoken to parolees about it. And that's taught me so much too. That's been amazing and you have great conversations and great questions. And so, it's been, yeah. Apart from what I've done for caregivers, that part has been really fascinating to me too. It's just, I don't know.

Erik: You also know about this caregiving from the other side as well because didn't you get sick and so, you were at the receiving end of caregiving for a long while, I understand. What'd you learn from that?

Heather : It's postural orthostatic tachycardia syndrome [inaudible 00:27:12] and then adrenal insufficiency and then I [crosstalk 00:27:17] and had to have a radical hysterectomy and then worst of that, seizures, right? [inaudible 00:27:25] Seizures came on, I don't know where and they still don't know. It's nocturnal. It's when I'm asleep and so, all that piled together. My body [crosstalk 00:27:35] revolted against me. The hardest thing for me was accepting that I was sick and that I was now a person living with a disability and the biggest fight Matt and I ever got in was he's like, "We need to apply for SSDI. Social security disability. Get you some benefits right now. I need that help," and I was like, "Why? Why would you do that? I don't understand." Just was in his face and he was like, "Heather, you're sick," and that acceptance of me looking at myself, I wasn't who I was before. I didn't physically have all the same parts I had and that-

Erik: So, you're a good caregiver, but sometimes that means you're a terrible care receiver.

Heather : Yes. [crosstalk 00:28:21] agree with that. So, I think it taught me to just be empathetic and not treat Connor like he couldn't do things and I think that's why right away I just started pushing him. And maybe sometimes too soon. If you want that soda, get off the couch, get into your chair and roll and go get it. I was like, "You have wheels." I would have been like, "You have legs." I'm like, "You have wheels. Go do it," because I wanted him to be empowered in this new body he had.

Erik: That is another tendency I would imagine for a caregiver, right? You baby the person. You want to take care of them. You want to protect them extra carefully now and that maybe doesn't do them any favors, right? So as a mom, how do you empower Connor? You tell him to go get his own apple, right?

Heather : Yeah and I think you've give him... Maybe that's why I was so crazy finding so many things and saying, "These are the avenues." We've set out outdoor buddies, we found you guys, we found No Barriers, wheelchair basketball and I said, "I could have you do 1000 things, but I need you to make that choice. What is it that you're interested in?"

Heather : And so, he feels that I'm not just shuttling him around, like mom picked this for me and I feel like that was one of the ways and then just, I think pushing him too. Not letting him get all like, "Oh, well, it was me." And I was like, "You know what? You are lucky. This sucks, but look at what you have now. Look at all these blessings that have come into our lives and you have all these avenues that you wouldn't have," but then letting him pick those avenues and his brother treating him the same. Max and Connor, the first day they saw each other, they fought down at Craig. I was super embarrassed, but I didn't stop that because I felt I want Connor to... I know it's not the same, but we're going to treat you the same. I'm not going to change necessarily how I treat him. I might even push you harder.

Dave : Heather, we often joke, you and I often joke that your story reads and sounds a little like something out of a terrible movie about hardship and the hardships that a family faces-

Erik: Hallmark movie.

Dave : Yeah and we haven't even talked about what recently happened with your father and now you're taking care of your mother too, but one of the things that I find to be striking about you is despite this movie scene, that the response you have and the energy you have in terms of positivity and hope and optimism doesn't seem to equate to the story and so, I wonder if you can talk a little bit about how you managed. I mean, I'm sure you're not that way all the time, but there is this part of you that still has this amazing, positive, optimistic, hopeful spirit, despite this string of things that you have been through in your life.

Heather : First of all, I was really fortunate. I had amazing grandparents. They were the most beautiful, kind, wonderful giving people and they believed in me and they spent extra time with me and they were just like... Oh, you couldn't create better grandparents. So, I think having just that little bit, it shows you. Dave, I think it speaks to if you're given love and you're given belief from someone at an early age, you're empowering them to get through so much.

Heather : Later on in life, you build that foundation and they gave me that small foundation. And so, whenever I went through hard stuff or I didn't believe in myself, I would just channel them. And I was thinking if those beautiful people believe in me, then maybe I can get through this because that's how awesome they were. And then I think too, that I think it goes back to really conscious choices. I saw my mom and my dad and my brothers choose bitterness and choose anger and choose always outward blame, never looking in, not having any self-awareness, not taking responsibility. And so, making that choice that, yeah, this sucks right now and I'm going to take some time and totally feel it and be angry and sad and why is me? But then making the choice to be like okay, that's enough time. Time to snap out of it.

Erik: And tagging onto that question, Dave of yours, I mean it's a painful journey. It seems like that was a beautiful moment with you and Reggie, right? There's some beauty, there's some fulfillment, there's some joy, there's some empowerment along the way. Any signposts of that, that you can talk about with us? Maybe something you and Connor have done recently or something that just says, "Hey, things are okay, we're moving in the right direction?"

Heather : I think, Eric, none where I came from and then looking at my family and they all saw it and me and Matty are like, I just love Matt to pieces. Sometimes I want to strangle him to pieces, but he's just my best friend and been my partner and that we've built that even amongst the chaos I grew up, but then all of the chaos we've had to deal with and we're coming out okay. I think that's probably, I know it might not sound big to people, but that's my proudest moment, that we can sit around and we love each other and we can laugh.

Dave : And for those listeners who aren't aware, NoBarriersUSA.org, you can go to our website and click on caregivers for some of the programs that are there and get some direction. There's also a great community that Heather has built that's around that No Barriers community where people are sharing resources and sharing struggles and sharing joys.

Heather : Thanks Dave.

Dave : Yeah. Well, I did the plug for you. You got to do it, right? You got to do it. Well, Heather, this has been an amazing journey with you. We are honored that you are doing this work for caregivers across the nation and as always, listeners, you can go to our show notes at NoBarriersPodcast.com to get any of the links to organizations that were referenced during this conversation, but Heather, we wish you the very best of luck in your continued journey.

Heather : Well-

Erik: Thanks Heather.

Heather : Yeah. You're welcome. Thank you so much for having me. I love you guys and it was great to have a conversation by myself. Yay.

Dave : Well Eric, what did you hear from today's conversation that stood out for you?

Erik: I mean, I might take away, it's so simple, but for me it's profound. I mean, I just have huge empathy for one, parents and moms and caregivers and she, Heather, just validated so many feelings that are natural, right? I mean, somebody is in this situation and they're going through all the stuff Heather talked about and I think she just went through the list and validated everything. So, all this stuff is natural and there's a way through it. It's a messy, hard, painful process, but there's a way forward to a little bit of light and joy and peace and fulfillment and empowerment, as she said.

Erik: So, I like that and it's such an authentic message, right? That there are big challenging days and dark periods, right? But you come out and you take that walk and you're moving in the right direction.

Dave : Yeah and for me, we didn't go too deep into this topic, but this whole conversation we had around isolation and how caregivers often feel very isolated. And I imagine even in terms of what's happening now with COVID and people at home, probably even all the more so isolated. It's just that commitment to build community that we have in No Barriers. Specifically, how do you build community for people who need it? Who feel isolated? How do you go about creating that?

Dave : I mean, even as Heather said, she wasn't looking for it particularly online at first, but how do you do that? Because it's very easy to hold up on your own and to get to pretty dark places if you don't have that community of support around you.

Erik: Yeah, for sure.

Dave : Well, thank you all for joining us today. As always, if you enjoyed the conversation, please share it with one other person. If you are interested in joining any No Barriers program, whether it be for caregivers or our No Barriers Summit or online programming, you can find out more at NoBarriersUSA.org. Thanks so much for listening.

Erik: No Barriers. The production team behind this podcast includes senior producer, Pauline Schaffer, executive producer, Diedrich Jong, sound design, editing, and mixing by Tyler Cottman, graphics by Sam Davis and marketing support by Megan Lee and Carly Sandsmark. Special thanks to the Dan Ryan Band for our intro song Guidance and thanks to all of you for


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