In the U.S., as many as 8.4 million people act as caregivers to adults with emotional or mental health conditions. That’s according to a recent report co-authored by the National Alliance for Caregiving (NAC) and the National Alliance on Mental Illness (NAMI). Mental health caregivers often have a heavier burden of care and higher stress levels than a typical family caregiver. One such caregiver who faced a heavy burden—and ultimately, heartbreak—is Kristi Horner, whose brother suffered from mental illness and took his own life. Kristi is the founder of Courage to Caregivers, a Northeast Ohio non-profit focused exclusively on helping caregivers for a loved one with mental illness. Jana talks with Kristi about her journey with her brother through mental illness, and about how Kristi’s organization is helping caregivers get past the stigma of mental illness by providing them with education, support and empowerment.
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JANA: In the United States as many as 8.4 million people act as caregivers to adults with emotional or mental health conditions. That’s according to a recent report coauthored by the National Alliance for Caregiving and the National Alliance on Mental Illness. Mental health care givers often have a heavier burden of care and higher stress levels than a typical family caregiver. One such caregiver who faced a heavy burden and ultimately heartbreak is Kristi Horner. In 2014 Kristi’s younger brother was suffering from mental illness and took his own life. A few years later, Kristi founded the organization Courage to Caregivers, a nonprofit organization based in Northeast Ohio that supports caregivers for a loved one with mental illness. I am so happy and honored to have Kristi on the show. Kristi Horner, welcome to The Agewyz Podcast.
KRISTI: Thank you so much. I appreciate it.
JANA: So Kristi, did you grow up in Ohio? Just to kind of put this in a context for listeners?
KRISTI: Sure. I’ve actually lived in Ohio my entire life. Different parts, but always in Ohio.
JANA: Okay. Siblings? Close family? Sounds like it from the article I read.
KRISTI: Oh, absolutely right. So I’m the oldest of what were four, and I have two other sisters and my younger brother as you just mentioned, and my family is all in Ohio at this time.
JANA: So I referenced your brother, but prior to 2014 you actually received a very fateful call in June of 2010 from your younger brother and maybe you could tell us about that. And where was he living at the time?
KRISTI: He was out of state and really just for the privacy of his family and his young children, that’s really all I tend to say. But he was out of state and so as you said, it was June in 2010 and you get a call from your younger brother and you’re like, Hey, how’s it going? And I was not prepared for the call. He really got right to the point and shared that he had wanted to end his life. I happened to be driving. So I immediately pulled over and I have experience as a Stephen Minister in our congregation, and essentially for anyone who is not familiar with that ministry, it’s a lay caring ministry, providing one to one support for those in need. And so I had been trained through understanding and supporting someone who is suicidal. So I knew enough to really ask some really hard questions at that moment, even though you’re never really prepared for that when it’s someone you love this much.
KRISTI: But I knew enough to ask him if he had a plan, and it’s really hard to hear when someone shares their plan. But he did. And then I asked if he had the means to execute the plans and he said he did not. So it gave me, again, some context for where he was in crisis. And then as I continued to talk and listen, he said, you know, just hearing your voice, just knowing you can be here, just you know, talking through this, I feel so much better. And I was like, great, I’ll be there in, you know, at that point it was like four or five hours. And so I was texting with my husband on the back end and he had gotten me on the next flight. And I turned my car around and headed to the airport instead. What followed were two weeks of like on the ground getting a care plan in place and supporting his family. At that point, he, again- what I knew from that care ministry as a Stephen Minister was you never give someone the idea to take their life by talking about it. Talking about it is what actually can prevent suicide. And so I knew that I just had to keep him talking and ultimately that’s what I did. And then he just backed down and realized he could use some help at that point.
JANA: I read that he was in a lot of chronic pain because of a gallbladder surgery. So up to that point, how was he managing his mental health condition? Or his health, given the chronic pain?
KRISTI: Exactly. So it turns out, you know, we have so much more context now, but he really cites his mental health challenges back to adolescence. There was some trauma in his adolescence with our parents divorce, and a custody battle… he was the only one at home and had to go through the worst of that and had gone off to boarding school, and kind of a trauma of those things sent him into his very first, what he cites depression. And then I’d say that he probably lived off and on managing — and I’m sure we all know and probably care for and love people who are managing at a pretty high level with depression or anxiety. It’s so common today, right? And then in 2008 the trauma again of getting his gallbladder out — which is pretty routine, I know a lot of people who’ve had their gallbladder out — and it left him in chronic pain. And he went all the way to the Mayo Clinic with that chronic pain, and ultimately they said, hey, there’s nothing we can do for you. Everything surgically, physically, is fine. And yet this pain was so horrible. And we saw the reaction of his body to this physical pain. It no longer allowed him to manage all of his underlying mental health challenges, and it compounded with obsessive compulsive disease, as well. So.
JANA: So at that point was he treated for mental illness? Was he on any medication for that? Not that that’s the only option.
KRISTI: Of course, oh, it’s so complicated as we all know, and I’ve come to know even more in the last few years. I think that’s everybody’s first reaction, like we were like, Hey– so you’ve got all this going on. We know there’s good medications out there and there’s so many good medications. We understand that if one doesn’t work, you try the next and try the next. There’s also talk therapy and there’s communities and there’s support groups. And yet the challenges of his mental health issues prohibited him from leaving the house and seeking help, first of all. But second of all, he really felt in his head that taking medication was going to only [exacerbate] his physical pain. And so in his mind there were no options for medication because it would make the physical pain worse. And so he tried to manage them with meditation and reading and exercise, and he loved the outdoors. But there were days that his mental health challenges just didn’t allow him to fully take advantage of all those good options to manage his mental health. He did see a counselor off and on, but it just was never enough, if you will.
JANA: When you designed the care plan for him and when you flew out there, what did that look like?
KRISTI: So it was, Hey, here are lists of therapists, and you know you need to start calling them. So it was really compiling a list of resources for him. Therapist’s for him, some joint counseling for the family. Ultimately, like looking back now, if I were to support a family through the same thing I had been through, I may not approach the care plan in quite the same way, because what I realized was, just like when you, I don’t know if you’ve ever parented teenagers or adolescent, right? And you give them five things to work on for the day, or five things to focus on, like clean your room, clean out your car, sweep the floors. Well you’re going to be lucky if one thing stuck. Exactly, and there’s this fine line of enabling and supporting. Codependency and supporting.
KRISTI: And so looking back, I left him with like a to do list. It was far too much now that I much better understand his challenges. It was just too much and so I probably would have approached it a little different, those two weeks that my one sister and I were there with the family. We improved things in the house during those two weeks I would say, and yet I probably should have treated it a little differently. I’m not sure I understood the depth of the extent of his abilities and inabilities to manage. Ultimately, what followed were four years of providing a lot of care to him and mostly through the form of active listening on the calls for two and three hours at a time, and then some visits in between. Again, things definitely improved. So we celebrated those little milestones of improvement. But recognizing now the depth to what he was not managing, we probably should have done a stronger intervention, to be quite honest. But again, hindsight is 20/20. I try not to live in the past because– I was just actually talking to one of my sisters — I will always live with some of that, and I’ve worked really hard to lose some of and let go of some of that. But it’s just part of my story. It’s part of what fuels me forward to help others, is my story and where I failed, to be quite honest.
JANA: Yeah. And it’s a strong motivator. I can tell you, in a different context I can certainly relate to that. But we’re not talking about me.
KRISTI: But it’s relatable, right?
JANA: Yeah, for sure. For sure. You want to make up for what you missed.
KRISTI: Yeah. When I changed my pitch, that I provide to my audiences — and I have, you know, short, medium and long versions — but I now start with: who here is providing care to someone they love? Because everyone in your audience is or has provided care to someone they love.
JANA: In one form or another. For sure.
KRISTI: Yes! So it makes it relatable.
JANA: Yeah, and you have to be away from it for awhile to really look at it objectively. It’s really just, it’s so hard. You’re really flying blind up to that point. Had you consulted with any medical professionals outside of the care plan you implemented, or tried to implement?
KRISTI: Right. Right, right, right. So my very first call outside of my husband, which was getting me on the flight to see my brother, was — one of my best friends, lifelong friends, who is a renowned physician here in Cleveland, and she was one of the smartest people I knew. I knew that she would direct me to the right place, and she did. She sent me to the suicide prevention lifeline. And so at that moment, on that day in 2010, the suicide prevention lifeline went in all our phones. His family, his, mine, my sisters, my parents, everyone had access to that lifeline. Because what we now know, especially is that that lifeline is there not just for the person who is contemplating suicide, but also for those who support that person. And so I’ve made everyone that I talk to put that in their phone so that number’s in their phone. And there’s also the crisis text line, but that time really it was a suicide prevention lifeline that went in our phone. You know, and then she said, you know, this is the level of care, this is the kind of care, these are the people you’re looking for.
KRISTI: So she actually helped me to distinguish between– a greater understanding between what kind of care, like psychologists, psychiatrists, counselors, social workers, all those levels of care. They all were jumbled up until that moment. And so she helped me gain some clarity on what kind of people, because again, she wasn’t diagnosing him, she wasn’t working with him. She was supporting me as the caregiver to: here’s what you need to do. So she absolutely directed me towards that path. And then it becomes this fine line, right? If he was my child, and that child was even a dependent or under 18, I would have much more control, if you will, over his care plan. He was every bit an adult and a very independent, stubborn adult even though he was my little brother by almost 10 years. And so he needed me for one thing, and that was the active listening.
KRISTI: He felt like he had no one else to turn to or talk to you about the depths of his darkness. And I became that primary person. And a few of the rest of the family members absolutely filled in and heard different pieces and parts to his story. So we each had a place for him in his toolbox, if you will. And that is what he valued most in the end. Those counselors and therapists, it was very hard for him to navigate that and to find a place — a source of comfort or help to him. So again, anyone who supports someone with a brain difference knows that the voices in their hea — and sometimes that’s literally for some people with mental health challenges. For my brother, it was those two voices in your head, which tells you, you know, right from wrong, good and bad. I’m on the right path. I’m not. It’s literally that voice that was just telling him, I’m not worthy. The world is better without me. I’m such a drag. I am not helping my kids. I no longer do things I used to love to do. Those negative voices in his head became stronger and louder than the ones like us that were telling him, you are worthy, you matter, you’re doing good things. Those loud voices just took over. And what we now know is that people don’t want to end their life. People want the pain to end. They want to end the pain. They don’t want to end their life. They want to end their pain. And so it’s not about them, really. It’s about the pain.
JANA: This is not something that most people would break down, in that way and think about. I certainly wouldn’t frame it that way ’cause I have no experience with that. So I appreciate your making that distinction. And you sound like you were doing pretty well. Then in 2014, you got a different kind of call.
KRISTI: Yeah, we did. So I just think that that’s one of those hardcore memory balls that you just don’t ever forget. I will never forget where I was… the few hours that transpired right beforehand… the way the call came through, our reaction. I will never ever forget that call. He had made such improvement and such great strides that it was almost unbelievable. And the first thing that goes through your mind is, you know, besides, No, this can’t be true, is — the very next question is why. And I’ve talked to literally hundreds of people in the last five years as we’ve shared our story. And it’s everyone’s first question: why? I just don’t understand. Why? And even though we did, you don’t want to accept any of that. And so it’s why, why, why? And you know, was there a note? Why? Maybe that will give us some understanding and context. Why. You want someone to blame.
KRISTI: Because that helps with the why. I mean, it just always goes back to, Why? When it’s so unbelievable. Like you and I talking, we just can’t even imagine the depth of the pain to which he must have been feeling to actually do this to himself. And yet he really believed that the rest of us would be better without him dragging us down, including his own family with two young kids and his ex wife. And all of us. I mean, he just really felt that we’d all be better off without him. That’s what his voices were telling him in his head. And so we actually, as a family, had to seek help to understand the why. Because it was just so unbearable to us that, you know, he called me the first time. And maybe it wasn’t the first time, but in my mind he called me the first time and allowed me to come and help him. Why didn’t he call us that time? And…
JANA: Yeah. For listeners, we’re talking about a phone call that Kristi received in May of 2014 from a detective who informed her of her brother’s suicide. Just to make that clear. I– I just I can’t even imagine. It’s unfathomable. … So Kristi, after that, you did form the non-profit Courage to Caregivers. And tell us when you decided to do that and, and sort of how that came about.
KRISTI: Right. So almost as soon as it happened, and my sisters and I raced out there again, and you know, we were really picking up the pieces and putting things back together, which is what we do. My sisters night take action, right? And we’re working together. Do all the nuts and bolts of what has to be done. And again, I’m the oldest so I quickly become the Special Administrator for his estate and we have to do all the nuts– and the nuts and bolts keep you, in grief, from really the depths of your grief, kind of right away. And as we were working together to kind of clean up things, if you will, literally and emotionally, and supporting his family. Because I have to be honest, telling my parents was absolutely the hardest thing I’ve ever done in my life. To deliver that news to them. They’re the ones who brought him life.
KRISTI: And so, as a parent your heart just explodes when you have to tell your own parents about this. And then to go and face his young children was the second hardest thing. Of course, I didn’t have to tell them. They already knew and they had their beautiful mom to support them through that. And yet in the depths of our grief, grieving together and taking that journey of understanding why, was really, really hard. During those two weeks of putting things back together in all these ways, I immediately realized there just had to be a better way of supporting someone you love with their mental health journey. There just had to be a better way. Of all the people we had talked to, and we also talked to some of his counselors post-mortem because you can do that, and to better understand where he was that week leading up to this. No one sent us to NAMI, the National Alliance on Mental Illness, which is the gold standard for supporting people in their mental health challenges, as well as caregivers. No one sent us there. And you know, as we’ve come to explore what they do and provide, they do excellent psychoeducational programming to better understand your loved one’s mental health challenges. They provide a lot of great resources. So in all of our experience, which again in the course of my lifetime was really only, you know, 8 to 10 years if you will. But in that experience, no one directed us towards taking care of ourselves.
JANA: That’s just shocking.
KRISTI: It was really entirely focused on supporting him. And so I just said, there has to be a better way. And to be quite honest, I’m just a problem solver. So I couldn’t let it go. I couldn’t let it go. And I’ve shared my story a hundred times, right away, because people wanted to understand. They wanted to know how they could support their own friends or family members. I think when you have someone who’s gone through this and you’re their friend, it’s comfortable to talk to them. So it was easier to call me as a first line of support, and then I directed them to other places. So I started to get the hang of this, like, wow — the more I tell my story, I bringing hope and healing to other people. Oh, I’m a source of resources for people now. Oh, people want to know what to do and what not to do.
KRISTI: Okay. I get that. And as I talked to people, one of the first people was, Hey, my kids have a lot of questions about mental health challenges of my partner. What do I do? How do I talk to them? And it was at that moment I said out loud for the first time, I’ve had this idea to start something that supports only the mental illness caregiver in their journey of caregiving. And this young entrepreneur said to me, you are not going to wait. This is too important. I’m going to help you. And she became my own personal entrepreneurial accelerator, if you will, pushing me to say, this is what we’re going to do next. Nope, we’re not going to take a rest. We got to talk to some more people. We have this idea, what’s it going to look like? How’s it gonna feel like? And it really just started by the first time I said it out loud. So.
JANA: What a wonderful gift, to have that person come into your life, too.
KRISTI: Oh, right. And I’m a person of faith, so I believe that every single person you meet is for a reason, that is much bigger than you could ever imagine. And sometimes you don’t ever know what that reason is for many years.
JANA: Yeah, I agree. Kristi, what unique challenges do caregivers of people with a mental illness face? I know the stigma is huge. The stigma of mental illness affects access to services. I wonder if you could speak on that — the particular challenges.
KRISTI: Right, so that stigma of mental illness is probably the number one barrier to both getting help and then taking care of yourself. Because what I’ve come to say now is it’s kind of acceptance is the first step. My loved one is living with mental health challenge, or a brain difference or whatever you choose to call it. And the umbrella of mental illness is huge. The DSM for mood disorders is huge, so there’s a lot of things that fall under that. So acceptance is the first step, right? My loved one is living with a brain difference, a mental health challenge, that, thereby, makes me a mental illness caregiver — someone who provides care to someone they love with a mental health challenge. And so accepting that that’s your role and that’s where you are, then saying to yourself, I need help because it’s really hard to navigate this alone.
KRISTI: So what does that look like? Again, saying those two things out loud, looking back for myself, it was: this was brother’s story of mental health challenges. I can’t share that story. I may be providing his care, but I can’t say that out loud. I’m protecting his privacy, his family’s privacy and confidentiality. So I can’t share that. And yet, I then didn’t own my own story of providing care to someone I love, not realizing I could separate the two. I was so focused on him, that it didn’t allow me to focus on me. So (a) acceptance that that’s your story, (b) acknowledging that you can’t do it alone, and then (c) which is, you have to prioritize your own self care. And I say all the time, it’s the analogy of the flight attendant and the oxygen mask, and I’m not sure if you know this, but when those oxygen masks deploy on an airline, you have 18 seconds before you will pass out.
JANA: Wow. I did not know that.
KRISTI: Yeah, 18 seconds. So my husband’s first reaction always is: absolutely, I’m going to put it on my three kids and my wife, I’m gonna take care of everybody else before I put it on my own. He would have been passed out before he could help anyone else. And then what good are you? So if you don’t put your own oxygen mask on first and you pass out, you will be of no good to anyone, including yourself. So it’s that perfect analogy and it’s not a Kristi analogy, right? It’s been out there for a long, long time with regards to caregiving, and yet it’s just what is so relatable for people, which is, Oh wow, I get it, 18 seconds? I have to start doing that, putting on my own quickly, and then I can attend to my young children and those around me. It sounds selfish. It’s so, not selfish.
JANA: Right, right it does, but it’s really the best advice. The fact that it is such a stigma really does, I think, differentiate it from– I hate to say garden variety caregiving, because it’s so hard to begin with, caregiving. But you know, you think about it, people are probably more inclined to talk about age related illnesses that their loved ones have to attend to. But there’s such a stigma. Fortunately, a little bit less so I think over time. Have you seen a generational difference in terms of the folks that you’re now serving in terms of their willingness to share? And what sort of people do you serve?
KRISTI: Right. And so to be quite honest, we just kicked off our first two in-person programming last week. And so a lot of people have been asking me, who do you serve? Who do you serve? And I said, well, let me find out who shows up. Right? Who resonates with the programs we’re doing? So what I have always said is if you can relate to our mission, which is to provide hope, support, and courage to caregivers and loved ones of those living with mental illness. If you can relate to our mission, if you feel that our programs and services would be of benefit to you– and I know we’re going to get into that later– then feel free to come and take advantage of our programs and services. I am not going to ask for your credentials for your loved one’s mental illness at the door. First of all, that doesn’t exist.
KRISTI: It’s not like there’s an AARP card that says you are over a certain age. I am not going to ask for your credentials. As a matter of fact, your loved one’s story, while it’s important to you and why you are here and your journey… your loved one’s story will not be discussed in our in-person programming because our in-person programming is all about you and your self care. So as the founder, I’ve heard a lot of different stories and I know most people’s stories who walks through the door, by virtue of the connections we’ve made. I’d say that we serve most people that look like me. So, I’m 56, I have supported a brother, we have people supporting spouses, we have some people supporting parents, a lot of siblings, and a lot of adolescents to college-age children. And I think that’s by virtue of the circles of our influence and our connections, right?
KRISTI: So if you start with me, and you go to my friends and family, which is what the first mailing list was, right? My friends and family. And then we go to their circles, which widens a little bit, it continues to look like me for a little while. And then by virtue of being a grassroots effort, our hope is that our circles of influence become wider as one person brings two people, brings four people, brings, you know, see the algorithm going forward. For now it starts with people that look a lot like me because that’s where it started. And then it will expand over time.
JANA: Right? And it’s brand new. Tell us about the programs.
KRISTI: Brand new. Right. So I feel like in my head we’ve been at this for almost five years. Cause that’s where it started. And yet, the reality, when people are like, Kristi you just started. I’m like, Oh right. My head is not where it is. And so we incorporated in April of ’17, and that’s when you do all your official paperwork. I had a Board, we created a corporate checking account, we got our 501(c)(3) that summer… we did a marketing research study to basically say, what do you mental illness caregivers– what are they looking for? What do they want? We had a lot of ideas. We had like 25 ideas. We sent it out to this marketing research, and we had about 150 responses from mental illness caregivers who helped us to prioritize those programs and services. So they narrowed it down to the top 6 and we drew a line there and said, great.
KRISTI: So we created a program model for the top 6 most requested services and we sent those to focus groups. And in those 6 focus groups for those programs, we got excellent feedback and really honed our models on 6 programs and services. So being the overachiever and excited person I am, highly-motivated to say we are going to pilot 6 programs in our launch phase, I’d talked to so many wonderful mentors along the way and one of my biggest heroes locally who runs a giant integrative health medicine program for one of the big hospitals here, basically said, Uh, no you’re not. You’re going to pilot 2 programs and you’re going to do them really well. Because then you’ll prove your credibility and you’ll prove the impact that you’re going to make and then you can decide what you want to do past that pilot. And of course I was like, okay, well we’re really going to pilot 3, so I kind of compromised between 6 and 2, because I was really excited about that third program if I were to go in order of what was most well-received by our focus groups and what’s got them most excited.
KRISTI: So I’m, I’m at three and I’m really glad we picked the 3 that we did. So here’s what we landed. We first piloted in the fall, our first program in November launched and it can be virtual, so this is great for your listeners who might be looking for extra support. It’s really peer support, purely for caregivers, but mental illness caregivers of course. But under that umbrella, dementia does fall under, and Alzheimer’s falls under, the brain difference umbrella. So we do have a few volunteers and caregivers we are supporting with dementia and Alzheimer’s. So it is one-to-one caregiver support and it’s really based on my Stephen Ministry experience of providing that one-to-one caring ministry. So we have people who register with us as volunteers or participants. Everyone is a caregiver with experience. Those volunteers are a little further along, so someone like me who could support someone who’s brand new on their journey. They are interviewed after they register, then we match them based on their stories of care.
KRISTI: It’s a very personalized concierge service of saying, you know, Joe would be a great match for Harry over here based on their stories and what Harry needs. And so then we train the volunteers. They have a series of 6 webinars that they do, they can do it again virtually from their home. They are trained. We give every volunteer who could be meeting with their caregiver in person, a background check and they sign all kinds of confidentiality waivers and we have a volunteer process. Then they get to match and then they get started on their caregiving journey of supporting their person. So we have 30 people registered for that program and I wish I could say there’s 15 matches, but we actually have more caregivers in need of support than we do volunteers. We’re actively seeking volunteers. Actively seeking volunteers based on personal stories. And so we’re actually, it’s very concierge-based at this point, and it can be virtual.
KRISTI: So that’s the beautiful thing. It can be done over the phone or Skype or Facetime. It does not have to be in person, because we have volunteers all over the country, which is so great. And our second two programs, which launched last week in Cleveland. So we serve Northeast Ohio and we have people from as far east and west– you know people are driving quite a ways to come because this service is not being provided. So we have east side and west side services, and the two programs we launched are Breathing Meditation and Support Groups. And they’re very different than what you would traditionally think about those two programs.
JANA: In what way?
KRISTI: In the fact that, again, this goes back to my experience with support groups and I’ve been to hundreds of support groups in my lifetime for a variety of issues or needs. And again, this is grossly stereotypical of a support group, so I do not want to offend anyone who may be leading a support group out there, and yet when they’re held in typically in the bottom of dark, dreary churches, because they’re in the basement, then you may walk in with a set of issues, but at the time you walk out, you walk out with a whole different set of issues. And mostly that’s because a support group that’s facilitated by a peer is pretty much a talk circle.
KRISTI: You’re in a circle. How’d your week go? You all talk a little bit. It goes to supporting the deepest, darkest person that week. And that’s fair. If you’re in crisis, you came and you want support, we’re there to support you. I typically was never that deepest, darkest person in the circle. So again, I walked in with one set of issues and walked out thinking, oh my gosh, my loved one’s going to die of a heroin overdose because heroin’s cheaper than pot right now. Did you know that? And you just, you walk out with all that extra baggage. And I never felt uplifted or positive or supported or feeling better about myself, let alone my loved one when I walked out of the support group. Ours is going to be so different. So it’s going to be also really hard. And here’s why. We’re asking you to check your loved one’s story at the door. And you are walking through into that room, whether it’s Breathing Mor 45 minutes or a Support Group for 45 minutes as yourself.
KRISTI: So you check your loved one. I would have checked my brother at the door. I walk through as Kristi. I walk into that room and I’m there purely to focus on myself. It is so hard to focus on yourself. There’s very few people who really love to focus on themselves, and so by being vulnerable to be there and then vulnerable to walk through the threshold, and then vulnerable to focus on yourself as a area of self-improvement. We’re asking a lot of people by doing that. And yet very rarely are we asking caregivers, how are you today? How are you doing? How was your day? We usually talk about our loved ones. How are they feeling? How are they doing? How is their hospital stay? How did their doctor’s appointment go? No one’s asking the caregiver, how are you doing? And so by just reframing the conversation to be about the caregiver and us saying, let us support you. Because when we can support you and you become stronger and more mentally and emotionally stronger and healthier, we know you are going to take better care of your loved one. We just know it. So that’s our focus during those two programs. We’re going to believe in you so much, until you can believe in you again and reclaim you. And we’re not saying it’s a sacrifice of your loved one at all. We are saying, let us help you to rebuild your own self- worth your own self-confidence, and give you some tools to take home to take better care of yourself at home.
JANA: That’s so important. And most support groups– again I’m generalizing like you are, but I’ve been to some support groups as a caregiver, and it is like a talk circle. And it’s therapeutic, but you walk away in a daze. You really need tools. You need people who are proactively helping you. So without naming names, would it be possible for you to tell us about one of the caregivers who came in and how that person benefited?
KRISTI: Sure. So as a matter of fact, we just, again, we just launched last week, right? And so I had some nice voicemails and emails of people who were surprised. They were surprised by the community building. Because we have some community building time beforehand for about 15 minutes in between the two sessions, and at the end. And we really didn’t know who’s going to stay for both, or who’s just there for one or the other. And to be quite honest, the Breathing Meditation, you come in and you are literally filled. It’s like a gift to yourself. And you don’t ever have to talk because the facilitator is leading you through this beautiful meditation and movement based on our theme and our topic of the week. And so literally you never have to speak if you don’t want to. So I was fully expecting people to come, be filled and leave without ever having to share. And yet they stayed for both.
KRISTI: So I thought that was a really interesting thing. And they definitely loved that aspect of just centering and um, the fact that deep breathing is such a tool that we don’t take time for and that is such a gift. It was hands down the favorite of our focus groups, hands down a fan favorite and I can already tell it’s going to be very popular. To be led through a meditation– some people can do that on their own and are really good at it, which is great, but you have to learn to do that. And you have to train your brain to do that. So that’s what we’re doing. We’re teaching people to reclaim that in all the hecticness of their life and business of their caregiving, to take time and train their brain to do this. And so we heard lots of great feedback from caregivers of, yes, what a gift this was, but I learned something new.
KRISTI: I didn’t think I was going to be able to do this. And yet quickly the facilitator helped me to get to a deep peace. And then we gave them a little bit of homework. The goal was, oh gosh, I hope I can do this at home. So this week tonight, as a matter of fact, we’re going to find out cause we’re going to say, how did that go? Were you able to keep this and sustain this at home? Where do we need to help? How can we support you, basically is the big question tonight. And then we carry on. We teach them another meditation and we give them a little more homework, and we hope this builds and becomes a tool in their toolbox. The Support Groups– a very different kind of energy, right? Again, we’re teaching them tools for their toolbox all towards building resilience of self care over time. And so we’ll be saying, how did that homework go? How did you do? We heard great feedback about our facilitators. We heard great feedback about just making time for them. They felt so special just being there with self care.
JANA: Yeah. I love the idea of the Breathing Meditation program because it’s really no pressure for the person who’s there. And you’re so right. We are distracted by so many things outside of us that we mostly move through the world in response to what is outside of us, not based on what we’re feeling in our own hearts and souls, even if we’re not aware of that, I think. I could be wrong, but I think that. Were there any other organizations doing this sort of work in Ohio?
KRISTI: We partnered with a lot of different community partners and continue to partner with more. You know, the ones that were obvious for me as community partners we found right away, by virtue of references and connections. And yet to this day people are like, hey, we want to be a community partner. We love what you’re doing. We do something similar, let’s meet. And so people I didn’t even know about, doing some of the same work, we are now meeting wiBh, talking about, because even though we just launched last week, our board is meeting this week and we’re going to be talking about scale. Where do we take this in 2020? I’m writing grants for 2020. Are we going to go deeper into what we are doing, and do it better and do it at more places? Or do we go wide? And I think my Board’s going to want to go deeper. And so as a result, these people who’ve come forward as community partners, they may be doing some similar things and yet very different. Because there’s a lot of yoga studios out there, and yet they’re not specializing in just breathing for caregivers. And so they recognize it as a need. They recognize it as an issue. Trauma-informed Yoga has been a huge thing. It’s just an explosive area within yoga, and so we’re starting to partner because we look at ourselves as operating in the trauma space, helping people through moments of crisis. And when you’re a caregiver there’s definitely a traumatic experience to that.
JANA: Oh yeah.
KRISTI: That’s any caregiver, right? So we look at partnering with people who are doing similar things, but we’re creating this niche expertise for programs and services specifically for mental illness caregivers. The Support Groups are one of the kind. No one is treating a support group like we are. They’re all looking at it through the lens of psychoeducational programming and understanding your loved one’s mental illness, and your journey of that support. So we are definitely pioneers there, and looking at probably just adding more locations. It’s going to be finding facilitators who are willing to take a try at something new, that’s going to be the hardest part there. Because we know that there’s people who want that. And the one-to-one caregiver support. Again, we’re the only ones providing that peer support, purely focused on the mental illness caregiver. There’s lots of peer support for their loved ones with mental illness, that are fully accredited and sanctioned by the state, but we’re going to continue to focus on those caregivers and I know we’ll see explosive growth in that program in 2020.
JANA: I understand the Courage to Caregivers programs are free for participants. Is that right?
KRISTI: So, right. In our pilot year, as we launched this in 2019 they are at no cost to the participants. Someone trained me early on to say that versus free, because free is as if we’re giving things away. At no cost means I’ve secured funding for this pilot year to launch these programs. Part of our pilot will be evaluating that price point. And if we can continue to be successful in our grant writing and be supported by those agencies, and we can continue to find community partners willing to host us at no cost to us, that might be our model going forward. It will be fleshed out this year as part of the pilot. Sometimes charging a small fee holds people accountable to showing up. So sometimes even when you’re in dire financial crisis, making a sacrifice to attend something important to you, holds them accountable. So finding that sweet spot of accountability and participation, it’s one of the things we’re measuring as part of our pilot.
JANA: Mm-hmm. You’ve really thought this through. I’m so impressed.
KRISTI: Some people would say I’ve overthought it, to be quite honest.
JANA: So for folks who live in Ohio, where can they learn more about your services?
KRISTI: The best place is our website, which is Couragetocaregivers.org. And we have a Programs and Services page that has all the details about when, where and how to show up and register. No registration required for the in-person programs, but we like to know who’s coming and stay in touch, so there’s a place to subscribe to our weekly inspirational email. And then of course you can direct dial. Our cell phone is (216) 536-7699. I’m the one who answers the phone. And again, in our launch we’re providing, very much, concierge services. So I do a lot of active listening and I have a lot of experience in that. So it’s just helping them to, helping quickly to triage in the sense of: is what they need, is what you need as a caregiver, what we can provide, what we know we can provide in our programs and services? Or am I referring you, first to NAMI because really everybody should start there to get their psychoeducational programming. Am I referring you to a private counselor or independent social worker? We have a lot of resources at our fingertips to get people to the right place based on the level of care that they need at that moment. So, we start there.
JANA: Great. And NAMI, for listeners who don’t know, is the National Alliance on Mental Illness. Kristi, I have one last question for you. How are your folks doing? And how is your family doing?
KRISTI: Right. You are so sweet to ask that, Jana. So I would say, as parents and of their generation, so they’re both in their 80s, that talking about this is really hard. And my mom’s a counselor. You know, she has gone on in her life to be a counselor. And they both had a really hard time finding grief resources that helped people of their age through suicide. And so it’s taken a long time for them to find that. But I would say that it’s still really, really hard. And for the same reasons I said that at the beginning: they brought my brother life, and this is just almost too unbearable or unbelievable to accept and understand. When we looked at the model for how to start and what to be involved, my family is very involved in Courage to Caregivers as a startup and everybody has played a role from referrals to marketing, to publicity, to hands on the ground to my sisters are at every outreach event and very involved.
KRISTI: I will say that I was the one that was willing to tell the story. And continually and consistently tell the story. And that’s how I became the Founder and Executive Director, but I am fully supported in every way. I talked to my sisters almost every day about something related to our non-profit and they’re both being trained to be me when I can’t be there. So they are interchangeable with me. We see our work with Courage to Caregivers and our programs and services as part of our healing journey. Telling our story not only brings hope and healing to those to share their own story, but it actually brings us so much healing in that trauma of better understanding, and helps to give meaning to our experience so that we can help people. And I would say it’s not a one-way street, right? I don’t just help people on their journey. I am receiving so much in return from them sharing their stories. It’s a two-way street. So we continue to receive healing through our work, and our continued conversation. So…
JANA: That’s wonderful. That’s really, really wonderful. Well, I’m about to close, but I want to offer you the opportunity for any last thoughts, if you have any,
KRISTI: Hmm… you’ve had such great questions, and you’ve done your homework and you’ve been very thoughtful in your approach because this is not an easy subject, right? I mean you work with, traditionally, the way people see caregivers, right? Those who are older. And I’m the sandwich generation. I support older parents, so I understand that role of caregiving. I will just say that there’s no competition here. No one’s out to win a race. Every story of caregiving is so important, and I’m not comparing my story of caregiving to your story of caregiving. Caregivers are heroes. They are doing this unpaid work. We know, based on all the national statistics, that being a caregiver is saving families across the entire world, so much in resources to provide that unpaid leave, unpaid work, and rarely do they get a thank you. So on behalf of all caregivers everywhere, I just want to say thank you to your audience for your role in caregiving, and just don’t forget to take care of yourself.
KRISTI: What I lost in those four years was sight of myself. And my lack of self care, which was really, I was an emotional eater. This care of my brother took me over the edge, of my story of support. So I would hang up and he’d say, Oh, I feel so much better. I’d hang up and I’d want to just collapse because I was physically and emotionally exhausted from our 2 and 3-hour calls. And I’d immediately go to the kitchen and I’d start eating. I gained almost 50 pounds in those four years. Now I wish I could blame my brother, I couldn’t. It was all on me as an emotional eater. So when I was able to reclaim me by focusing again on my self care, what I realized was: I matter, and I matter as much as my brother, so I have to take care of myself or I will not be there for the rest of my family. I just won’t. So my message to your listeners is: you matter… thank you… and do just one thing for yourself today. And it might just be opening the front door for some fresh air. It might be walking to get the mail. It might just be a shower. But take time in those moments to take a deep breath, and remember what you’re doing is so important. Take care of you.
JANA: We’ve been speaking with Kristi Horner, Founder and Executive Director of Courage to Caregivers…a Northeast Ohio non-profit organization that provides one-to-one caregiver support, support groups, educational programs and resources for family members and friends caring for someone with mental illness. We’ll have a link on the Agewyz website to Kristi’s organization, plus some additional resources you can tap into that Kristi mentioned in the show. Kristi, thank you so much for the work that you’re doing. I am so in awe of what you’re doing, and appreciate just as a caregiver what you’re doing. Thank you so much for being on the show, and for being so open about your story.
KRISTI: Well thank you for reaching out! Take care.
JANA: Bye Bye.