The Caregiver Warrior Provides Support for an Important Community | Susanne White

Welcome to My Hero 360! In this important interview, Jillian Comstock sits down with Susanne White, founder of the Caregiver Warrior, a website dedicated to offering resources and support to those who are caring for loved ones dealing with health impacts. Inspired by her own journey as her parents’ caregiver, Susanne is an inspiration to anyone navigating the challenging yet rewarding journey as a caregiver.

Key Highlights:

• Hear how Susanne White started her caregiving journey that launched a powerful new purpose and career.
• Learn about how Susanne advocated for the loved ones under her care.
• Hear how Susanne learned the importance of taking care of herself while also taking care of others.
• Be inspired by Susanne’s message to others who find themselves in a caregiver role.

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Transcript:

Jillian Comstock:

Hello, everyone. Welcome to My Hero 360. We are a story-sharing platform dedicated to sharing the stories of unsung heroes from around the world. Together we can empower each other and improve quality of life one story at a time. I’m Jill, and today we have yet another truly special episode lined up. We’re diving into the incredible journey of a remarkable individual whose story is nothing short of inspiring. Today, I have the immense pleasure of welcoming Susanne White to the platform. Susanne, thank you so, so much for joining us today. I’m beyond excited to have the chance to talk with you and share your story and insight with our audience. It’s truly an honor.

Susanne White:

Thank you so much. The honor is all mine. I just love the initiative and helping others help themselves, so I am just so pleased to be here.

Jillian Comstock:

Thank you. We really appreciate that. To kick things off, could you please introduce yourself to our listeners? Tell us a little bit about your background.

Susanne White:

Of course. I am Susanne White. I’m the founder of Caregiver Warrior, which is a lovely blog and website and a great source of caregiving, support, and tips. I originally founded this because I was a caregiver for my parents, both my parents, and then other family members, and I’m currently assisting in a caregiving journey. I really believed that my mistakes and how I handled my caregiving journey, if I shared my story about it, could really help other caregivers survive their journey with grace and empowerment.

Jillian Comstock:

Wonderful. Let’s jump right in. Susanne, you’ve eloquently earned the title of caregiver warrior, making a significant name for yourself in the process. Can you share the story of how your caregiving journey began? What were the initial challenges you encountered, and how did this shape your path?

Susanne White:

Yes, I most certainly can. I always say my caregiving journey began with a phone call. I was in New York. My parents had flown down to Florida to be with my sister for the holidays. They had to take my World War II hero, Bombardier pilot dad, very stoic man, never complained, never sick, they had to take him off a plane because he was so sick and so exhausted he couldn’t get off the plane by himself. When my sister called me, I was still in New York at the time, but she said, “Oh my gosh. They took Daddy off the plane.” I was like, “What?” She said, “Get down here right away.” What we came to find out was that my mom and dad together had planned and worked really hard to hide from us the fact that my mom was probably in the early stages of dementia and that his heart issues were getting a little bit worse.

They were a team. They were hiding it from us that they were now in a situation where my dad was actually in the midst of caregiver burnouts. He was in the midst of caregiver burnout. He had walking pneumonia, and his heart issues had escalated. In spending time with them and seeing that my mom, when he was sleeping so much and recuperating, was confused and repeating herself, asking questions, I took my dad aside and said, “Can I help, Daddy? Is there anything I can do?” He was like, “Oh, yeah. I would really appreciate that. Any help you can give me.” He said it so quickly. I said, “Okay. All right. Yeah, I’ll help you, Dad.” Knowing full well that I would absolutely show up for them, even though I didn’t get along with my mom that well, but that was my journey. I was going to care for people who cared for me and loved me, and I was going to show up for this caregiving no matter what it was, having no idea what I was getting into.

Jillian Comstock:

Absolutely. Thank you for sharing that. It’s clear that your early experiences have significantly shaped your approach to caregiving. Balancing such a demanding role must have required a great deal of resilience and resourcefulness. Speaking of balance, I’m interested in how you managed to juggle caregiving with your other personal and professional responsibilities. Can you share more about that aspect of your journey?

Susanne White:

Absolutely. Balancing, I was working full-time, so balancing a full-time job and caring for both my parents on what began on the weekends was very intense, to say the least, and extremely overwhelming. Again, like most caregivers, we just jump in rather clueless and about what that means. It means something different for every person because everyone is unique. The loved ones are unique, caregivers are unique, but caregivers don’t hesitate. I believe that caregivers are hardwired. We come here born as caregivers. There’s always one in the family. We’re wired to say yes and don’t necessarily know what that means, but we don’t make a list of the pros and cons of caretaking, like caregiving. We just do it. Sadly, often what happens is that we have jumped in, and we are now responsible for someone else’s life and wellbeing and health. We are caught in the midst of a thunderstorm, a tornado, a hurricane of emotions, practical issues that have to be addressed, all kinds of things that we need to deal with on a pretty immediate basis, having no idea really what’s going to happen and how we should do it.

But I think the intention is always there. Most of the time, most of us are … There are some reluctant caregivers who show up anyway, and they’re even more brave than I was. But I think that we show up, and I think that’s the secret. I think understanding that there’s no perfect way, there’s no perfect caregiver, there’s no perfect way to be a caregiver, that we’re all individuals, that we all bring different skillsets. I think if we bring our heart and our soul to it with good intentions, we’re already ahead of the game. It doesn’t mean that it’s going to be any less painful, or less frightening, or less intimidating. It just means that if we begin to understand we’re doing the best we can and be kind to ourselves about it, that it’s an easier journey.

Jillian Comstock:

I think you highlighted the complex nature of the caregiving role perfectly. Alongside managing these responsibilities, many caregivers also struggle with feelings of guilt. What advice would you give to someone experiencing this?

Susanne White:

Guilt and shame are 2 of my most favorite topics because I believe that we all suffer from feeling guilty and feeling shame, and we don’t talk about it a lot. I think that that’s in the middle, in the crux of this, exactly what we need to be talking about is the guilt and shame that we can feel as caregivers. We have to try to manage that and cope with that. I don’t think it’s ever going to go away. Guilt is when we feel bad about something that we didn’t do or something that we did do, which sadly caregivers feel a lot of guilt when in fact they’re doing the best they can, and they’re human, and guilt has no place in our lives.

However, shame is the feeling that there’s something wrong with us or that we’re flawed. If something happens, something bad happens, that we’re bad, or if we make a mistake, we are a mistake. I think that shame is something that we really need to address and be completely aware of because if we go in with very high expectations of ourselves, if we go in as perfectionists, I mean, I’m a recovering perfectionist. When we go in as perfectionists, we’re asking for a lot of trouble, and we could be in really big danger because mistakes are going to happen. Mistakes are going to be made, and unless we’re in a position where we view them as learning opportunities, they’re going to really hurt us, and we’re going to feel shame around them.

I want to do everything I can to share the fact that I made millions of mistakes. I was constantly adjusting. I was constantly learning. I’m still making mistakes. I’m still out of balance. I still have a hard time with the big emotions of caregiving. It’s an ongoing journey with myself while I’m on the journey of taking care of someone else, but shame has no place because it’s not my fault. I’m showing up. A lot of people can’t even show up. We are showing up, and we’re taking the responsibility of someone else’s life. It’s a huge commitment. Sadly, we get so involved in that responsibility and that commitment that we forget to be careful with ourselves.

Jillian Comstock:

Yes. I love that you bring up the idea of mistakes. I think so many people struggle with that. I, myself, can be a prisoner in my own head about the mistakes I’ve made in my life. Just the way you said it was so beautiful, and I’ve shared with you in the past how I live with my grandmother, and definitely feelings of guilt happen as well. Obviously, I’m not the primary caregiver in my household, but I can definitely relate to what you’re talking about. Thank you for that wonderful advice on dealing with guilt, really. It means a lot to not only me, but I’m sure the many that are watching. I think it’s reassuring for many going through their caregiving journey to know that there are ways to manage such challenging emotions. Beyond the emotional aspects, caregivers often find themselves in the role of an advocate for their loved ones, which can be equally demanding. How do you recommend others navigate the role of advocacy beyond caregiving?

Susanne White:

Yes. Again, what I have to stress for everybody is that when we compare, we despair, so compare and despair. Everyone’s different. We all have different ways of coping, and we all have different skill sets. I think it’s almost fascinating. If you look at the caregiver and the people that they care for, they’re ultimately matched, I think. If not, and they’re open to learning, they learn new skill sets. I think that’s why it’s so important that companies support working caregivers because the skillsets of a caregiver, the best employee you could possibly ever have is a caregiver because they’re developing skill sets all the time.

But we all have different skill sets, and I think the advocacy begins when you understand that there may be times that you have to be a voice for someone that you care for because their voice has been silenced. My mom had dementia, and I had to really learn how to make sure that she was as comfortable and felt as safe as she possibly could and as comfortable as she possibly could in her life with everything that was going on. I had to be really aware of her, and I had to be really aware of me. My greatest asset, I believe, was that I really tried, even though it was so difficult at times, to go into every single situation that I had to go in when I was advocating for her, whether it be the hospital or the healthcare system or the doctor’s office. However and whenever I had to get into a situation, I had to go in with a positive, open, willing attitude.

Jillian Comstock:

That’s so hard.

Susanne White:

Absolutely. You have to assume that everyone’s trying to do the best they can, including ourselves. I we’ve had a sleepless night, or we’re absolutely exhausted, or we haven’t eaten, or we’re stressed to the max because it’s a really, really bad or an emergency or a crisis that we’re in, we have to try to breathe, step back a little bit, and just trust ourselves and trust the people that we’re dealing with and trust that we’re going to get as much help as we can and to do the best we can. That’s all we have to do, and sometimes just showing up is enough. I want to scream it from the mountaintop that the bravest, most courageous thing we can do is show up. We don’t have to have it together, and it doesn’t have to be pretty, and it doesn’t have to be perfect, and it doesn’t have to be uber-professional. It just has to be, “Hey, I’m here. I’m claiming this space for me and my loved one and the people I’m dealing with, and I’m here. I’m showing up. Let’s see what we can do together to make this situation as good as it possibly can be for everyone involved.”

Jillian Comstock:

Absolutely. How can caregivers empower themselves while taking care of their loved ones? How did you personally realize the importance of self-care during your caregiving journey? What self-care strategies did you use, and do you have any recommendations for others?

Susanne White:

Absolutely. I do have recommendations. The first recommendation is nobody has all the answers, and it’s not immediate, and it takes time, and it takes practice, and we’re going to take 2 steps forward and 4 steps backward. When I started my caregiving journey, I was going to do it by myself. I was going to do it perfectly, and I was going to fix everything immediately. That’s a recipe for disaster. Nothing happened like that whatsoever. When I was most empowered, it was when I was just showing up and doing the best that I could and being self-aware. I had to realize that my parents weren’t going to change. They were never going to change. I had to change. They say if you’re hysteric, it’s historical. I had a lot of baggage with my mom. She could trigger me. We were so much alike. We were at each other all the time.

I had to really learn to be self-aware and watch me and see what I needed to be as positive of an influence with her as I could be. I had to understand. I had to really look at me. I had to look in the mirror. I had to become self-aware. How was I feeling? Were my shoulders up against my ears? Was my stomach in my throat? What was going on for me? The most important thing I learned was I had to understand I deserve to take care of me, that it wasn’t a luxury. Balance and coping and empowerment is that we deserve to take care of ourselves as we care for others. Who’s going to take care of them if we get sick?

We’re like an athlete. We’re like Olympian. We have to be in the best shape we can possibly be. We’ve got to be aware of what our body’s doing. We have to understand what we’re thinking and saying to ourselves. We have to understand what our heart is telling us. We have to really be self-aware. Ifthere’s anything we need, we have to understand or begin to understand what that is and give it to ourselves.

Jillian Comstock:

I love that you talk about self-awareness. There’s a quote that I live by that I want to just share quickly because I feel like it’s relevant to what we’re talking about. It’s a very short quote, and it just is, “People behave to the level of their self-awareness.” I try to live by that just in everyday life because it’s so true. Because you mentioned that your parents, they weren’t going to change because maybe they weren’t self-aware enough to change. It’s something that just helps me realize as I walk through this life. I have to just show up and do the best that I can because someone else may not have the self-awareness that I do or not. I’m working on that as well, but it’s just something that keeps me motivated and keeps me grounded in this life.

Susanne White:

That’s wonderful. Yes, because we have to be willing to be willing. Do you know what I mean? Expectations and perfectionism and all these things, and it’s all done with the best intention to fix everything, but we’re not here to fix anybody. We’re here to support them. There’s an amazing quote that’s, “We’re just walking each other home.”

I mean, I was walking my parents home. I was walking other family members home, and walking with them, walking them home, and I can’t fix anything. The only thing I can do is show up and be willing and watch the journey. Believe me, the answers come. Even when the answers don’t come, and I think this is really important also, there’s so much frustration and pain that we feel, and we compound our emotions. I would be angry at myself that I was angry. I would feel guilty when I was guilty. I would be anxious that I was going to get anxious. We’re so hard on ourselves.

The people that should be the kindest to themselves, people are serving other people or taking care of someone else or something outside of themselves. We should be running a victory lap and being kind to ourselves because we’re human. Believe me, it took me a very long time to even begin to get my coping skills. It was just because I was so miserable that I knew I had to change something. As I said, my parents weren’t going to change. I had to start to understand what I needed to make me feel better so that I could get to the next 24-hour period.

Jillian Comstock:

Sure. Right. That’s another thing. It’s so easy to worry. It’s so hard to be in this present moment and just face what’s happening in front of you. I think that really correlates with the whole caregiving role as well. In previous conversation, you mentioned that caregivers often experience a fear of the unknown. As a caregiver yourself, how have you navigated and managed these feelings?

Susanne White:

I’ve navigated very, very choppy waters with my fear of the unknown, and I still have it. It’s an ongoing process because that’s the future. I mean, the unknown is about the future. If we get stuck in the past or we get worried about the future, we’re missing extraordinarily precious time. Occasionally there I would have gratitude reminders where specifically that my parents weren’t going to be with me that long and that hello, wake up and be with them now. The unknown, most of the things I worried about did not happen; 80% of what we worry about doesn’t happen. It doesn’t mean that we’re not going to worry about it. It doesn’t mean that it doesn’t give us a lot of trouble or that our worry … It’s very difficult to stop worrying about what’s going to happen, and I understand that.

But if I look back on my life or what I survived and what I fixed and the things that didn’t happen, it was such a waste of my time to worry. It’s an ongoing battle with the unknown, but the bottom line of it is that the more we tell ourselves, “I really have no idea what’s going to happen. Let’s please concentrate on right now.” I’m a big fan of female sports, and I’m a big soccer girl. I love soccer, and there’s a player that I just love. Her name is Christen Press, and she’s been through a lot of injuries and a lot of physical problems. But she talked about how, and I never forgot this, during an interview, I heard her say that when she was on the field and something bad would happen, or she would miss a goal, or she would miss a kick, or she would miss a volley or whatever, she would have to really pull herself in and say to herself, “Where’s the ball? Where’s the ball? Where’s the ball?”

She would put her focus on that ball that she had to find to do the next right thing with. It’s always stuck in my mind, and I use that sometimes, and I use things like that. Where do I need to focus on right now? Because I’m wasting time and energy, and I’m getting frozen, and I’m in fear, and I’m not moving because of something that hasn’t even happened yet. I need to try to refocus myself on what I need to do and the next right thing right now.

Jillian Comstock:

I love that you shared about that female soccer player. That’s really good advice for anyone, I think. I assume when you are in the caregiver mindset, it consumes your whole world. You even said yourself, “It is a silent epidemic.” I love that you said that. That really stuck with me, leaving minimal time to think about your personal life. How do you transition out of that caregiver mindset once your caregiving duties are done?

Susanne White:

Yes. It is a difficult time, and I think grief is a very strange companion. We get very much into a pattern of behavior and management, self-management. I think that the caregiving journey is so intense, and it’s such a big commitment that when people that we care for are no longer with us, there’s a hole in our soul because we’ve put so much of our time and attention on making sure they’re safe and taken care of and loved. I believe that, like anything and like the caregiving journey itself, we just have to take a breath and go with it. We just have to sit there. No transition in caregiving is easy. The transition to be a caregiver is not easy. When we have to take on more responsibility during the caregiving journey, that’s not an easy transition. Then when we’re at a loss because we no longer are in a caregiving role, that’s an extremely difficult transition.

Again, it’s patience and kindness and self-awareness. What do we need? Whatever floats our boat to soothe ourselves and get through the period of grief and loss. I think that if we’re any good at all during the caregiving journey of getting in touch with who we are and what we need, I think that serves us really well at the end. That was one of the gifts of my caregiving journey. The first gift was that I healed my relationship with my mom because I found empathy and compassion for her and saw her in a way I had never seen her. I was able to really, really see the woman she was and how much we loved each other. But the second gift was that I became much more self-aware, and I learned so much about me. I had to. I had to learn why I did things, why I felt things, and how I could be a better me.

In coming out of the caregiving journey, I was a lot more self-aware than I was going in. At one point for me, I realized that my parents died within 7 weeks of each other. It was pretty powerful. After the initial shock and doing as many healthy things, as I believe in a team and touching base with other caregivers and therapy, anything we can do. But I was realized that I was really, really hurting to a point where it wasn’t comfortable in any way, shape, or form. I joined a bereavement group, and it was lovely, and it was wonderful, and it wasn’t rocket science. We were just people who lost people talking to each other with a spiritual guide, and it was just wonderful. I think there are things out there that we can tap into, but I think the most important thing we can tap into is self-awareness and what do we need to take care of us as the special amazing people that we are.

Jillian Comstock:

Thank you for sharing that. Hearing you talk about your journey and realizing why you needed to go through this, like you said, to heal the relationship with your mother, it’s genuinely so inspiring. I am just amazed. I’m just wondering if you don’t mind me asking, now that your caregiving duties are done, how did it change your identity? Did you feel like your purpose was different after?

Susanne White:

That’s a very interesting question, and I went on to other caregiving journeys afterward, but you’re right. The one with my parents was so primal. It’s so big for me. I really do think it was a life purpose. I’ve always been on a spiritual journey in my life. I mean, that’s just who I am, and I believe that that journey was a great gift to me because it really helped me. Like I said, I became a better me, and I understood who I was in relationship to my family and my parents. I understood who my parents were.

I think it grounded me in a way that I don’t think I would’ve been grounded had I not cared for them. It gave me a purpose of trying to help other caregivers. I’ve had people come to me and say to me, I had a dear friend of mine come to me and say, “Oh my God, I have to take care of my dad, and I can’t do it. I can’t stand him. He was really awful to me. I can’t do this. I don’t know how to do it. I’m not going to be able to do it.” I said, “Please just give it a try because there’s a promise in caregiving, and the promise is you’re going to heal a relationship.”

It’s strange, and it’s different for everyone, but I believe if we show up, and we work in unison with the universe, you’re healing a part of your own heart, especially if it’s someone that you have a bad relationship with. It doesn’t work for everyone. Everyone’s different. But I do believe in the possibility of healing our human relationships when we take care of other people, and I think that it’s an extraordinary gift, and your purpose does change and your heart does heal. Yes, walking through life with a heart that’s been healed a little bit in a certain area that was broken, I think was a great gift to me.

Jillian Comstock:

Wow. My last question, which I ask all of my interviewees that I interview, what would you tell your younger self knowing what you know now?

Susanne White:

I would tell my younger self that, “You’re going to take care of your mother, and it’s going to be a really good thing. Even though you’re going to tell me I’m crazy, and it’s never going to happen.” That the things we think are going to happen that are so important, whether they happen or not, are just leaves blowing in the wind. That the things that we think are so important are not important whatsoever. The things that we can’t even dream of yet, there’s dreams that we have and things that happen to us that put us on journeys and down paths that are extraordinary. Not to give up, and hang in there, that there’s a reason for everything, and it’s going to be a great rollercoaster ride.

Jillian Comstock:

Wonderful. Thank you, Susanne, for sharing your journey with us today. Your authenticity, vulnerability, and unwavering positivity are truly inspiring. Here at My Hero 360, we are deeply moved by the impact you’ve made through your advocacy and your work. Your story certainly serves as a beacon of hope for many. To our audience, thank you for tuning in. We hope to see you here again next time.

If you feel your story will ignite inspiration and positively impact others, go to our website at myhero360.com and submit your story there.

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Connect with Susanne White:

• Instagram: @caregiverwarrior
• Website: caregiverwarrior.com

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