Susanne White: 0:00

I wanted to make sure that, I could make them as safe and sound and comfortable as possible. I just never thought I was gonna pull it off. And because of that, I think that in the beginning I was a lot more heavy handed, a lot more nervous, a lot more anxious and probably not the nicest person to be around.

Rayna Neises: 0:19

That was special guest Susanne White. Welcome to A Season of Caring Podcast where there’s hope for living loving and caring with no regrets. This is Rayna Neises your host. And today guest, Susanne is a founder of Caregiver Warrior. She was blessed with the opportunity to care for her parents and venture out on a caregiving journey that would change her life. She blogs about this journey on her website, Caregiver Warrior.com and shares her experience, strength and hope with others so that they too may survive caregiving with grace and empowerment. Her book will be out September 6th, Self Care for Caregivers. You can pre-order it, now at her website. Follow her on Twitter, LinkedIn, Facebook and Instagram. Thank you so much for being here today. I’m so excited to have you.

Susanne White: 1:08

Oh, thank you so much for having me. I really appreciate it. And spending time on you so much fun.

Rayna Neises: 1:14

So tell my listeners a little bit about how your caregiving journey started.

Susanne White: 1:20

My caregiving journey started when they took my very stoic, World War II hero, Bombardier dad. He was a Bombardier pilot), off an airplane in a wheelchair, cuz he was so burnt out from caring for my mom who was. Unbeknownst to us cuz they were hiding it showing early, early signs of dementia. So there was a second time he was taken off a plane. The first time was when he was shot down and landed it in England. They took him off then. Yep. Yep. And then they took him off now. So the irony, you know, was not lost on us and, and it was a shock, cuz they were sort of working together, my mom and dad. To sort of hide the fact that she was failing and they really wanted to keep it to themselves and in their own little group and didn’t wanna ask us for help and didn’t wanna admit it. So having this happened to him, and while he was recuperating, we were all together for the holidays. We could see that my mom was really lost without him. Cause she was so dependent on him and you know, that it wasn’t just like senior moment memory loss that it was that something was going on. So that started the whole thing for me. And, and I, you know, said to my dad, Dad, you. Do you want help? And he said, yes. So fast.

Rayna Neises: 2:33

Oh, wow.

Susanne White: 2:35

Yes. Yes. She, on the other hand was a completely different story. She wanted nothing to do with help from me, but yeah, he said, yes, so fast that I just sort of jumped in and there I began there. I began my journey as a warrior.

Rayna Neises: 2:48

So were you living close by or what did that look?

Susanne White: 2:52

I’m a Jersey girl. So they lived in south Jersey and I was living in New York. I was living in Brooklyn. So about 90 minutes on the Jersey turnpike and started out, really long distance it was about four or five years. And, you know, at the end I was spending much more time down there, but I would work all week and then commute during the weekend. So I was a long distance caregiver in the beginning. And just so I just sort of basically worked and then took care of them for about four and a half years.

Rayna Neises: 3:18

Wow. Yeah. So it’s amazing that he said Yes, cuz like you said, he was not of that generation to be open to say I need help. So I love that you saw it and offered it and that he accepted it. I’m sure that really made a difference. But how did you navigate that long distance part? Was he pretty open about what was happening or what he needed?

Susanne White: 3:40

Well, you know, like most of us, I mean, I, I just, you know, look, I thought, you know, I’m a control freak type A personality. So I thought, I mean, you know, so I

Rayna Neises: 3:48

Can’t relate at all.

Susanne White: 3:50

no, no, see, yeah. I don’t know how nobody can relate especially caregivers. So of course I, you know, I thought I was gonna do it perfectly, do it all, do it by myself that I was gonna fix everything. And. So, I mean, it was really snarky for, at least for the first couple months. And, and as I said, my mom, my mom and I did not get along well at all. And the last person, she wanted to take care of her with me. She never wanted me to help her. So it was really snarky and, and, and difficult. And I had to really work at the period of adjustment, we all did. And I had to really think about and watch myself because I was really miserable and it was really uncomfortable and I was making lots of mistakes and I was hovering over them like a hella, I mean, it was just a mess. So, you know, the first six months to a year were really challenging in that I couldn’t quite find my way. None of us could. So, you know, I mean, I was taking care of them and then they were safe and sound, but it, we weren’t, none of us were comfort. So I really had to kind of work really hard at figuring it out and it, it wasn’t, and it wasn’t always pretty and it wasn’t always great, but I got better at it. We all got better at it, but I, I, I, I, I helped them get better at it. I was the one that had a change. They weren’t about to.

Rayna Neises: 5:07

Right. And I think that is such an important point is it really is about us and our hearts more than it is about them and how we approach them comes from our heart. And if we are trying to control and trying to manipulate, they know that, and it’s not gonna be pretty. So such a good point.

Susanne White: 5:25

Yeah,

Rayna Neises: 5:25

What would you say is the hardest thing for you about caregiving?

Susanne White: 5:31

I think the hardest thing was, was first of all, my perfectionism, I think that was really that, that hurt me a lot. And my parents a lot just the pain around trying to, you know, we’re also afraid, someone else’s life is at stake, you know what I mean? It’s a really important responsibility and commitment, you know, it’s really serious. And I, I think the fear that we have, I think, I think my perfectionism, which came from my fear was one of the hardest things for me to cope with and understand. Because I, I didn’t wanna hurt them. I wanted them to be okay. I wanted to make sure I didn’t screw up. I wanted to make sure that, you know, I could make them as safe and sound and comfortable as possible. And I worried about it. So that was the challenge though. I just never thought I was gonna pull it off. And because of that, I think that in the beginning I was a lot more heavy handed, a lot more nervous, a lot more anxious and probably not the nicest person to be around. I.

Rayna Neises: 6:32

That’s beautiful to hear you say, because probably many of us can relate to that feeling of just feeling so outta control that we aren’t truly ourselves because we’re living in that fear and learning to let go of that fear, then lets us be ourself more and really lead with our heart versus the fear.

Susanne White: 6:53

Mm-hmm Mm-hmm and I think I I’m I’m to be honest, I don’t think I ever lost that fear. the fear was always there. And I think for so many of us, there’s always a current of fear. I think that runs under, you know, like sort of in the back of our minds or whatever you, in our souls or whatever, there’s always that anticipation and that fear and that worry. I think it’s just something we start to just get used to. And I don’t think I ever lost it, but I think in being more self-aware I really pushed myself to be more self-aware. So that I managed my fear. I tried to manage my fear. I tried to be kinder to myself and try to work around it and be aware of it, even if I couldn’t control it, you know, I could sort of say, okay. Now wait a minute. Let’s try to rethink this. Let’s reframe it emotions, aren’t facts. Let’s try to look at this a little differently, I try to set an alarm bell on my fear. I think that’s probably the best way of saying it that, you know, I had certain things that would, oh, okay. You know, like, are my shoulders up to my ears? Am I, is my stomach in my throat?. Like bodily things or, you know, like, oh my God, am I shaking? I mean, where’s my anxiety level. I mean, really, really watching out for that stuff helped me sort of get a little more right- sized when I could.

Rayna Neises: 8:10

Yeah. Self-awareness is such an important piece. And I think it’s one of the gifts from caregiving is that we really do have to become more self-aware because who we are, how we handle it, where our anxiety is. It’s all infectious. And the more anxious we are, the more we share that. And so really becoming aware of that anxiety and understanding how it’s impacting others helps us to be better caregivers I think. For me, I think that fear wasn’t near as great, but I think it’s because I’d been on this journey before and at such a young age to realize there was absolutely nothing I could do to fix my mom made it a little easier to walk it with my dad because I already knew I can’t fix this. So my lens was just happy and healthy as long as possible. I knew that there was no happy ending as far as him being healed or being okay, but he could be as okay as he could be. And I wanted him to be, you know, happy and healthy as long as he could be. And. That was really my mantra that helped me to understand that I can’t control it all. I can’t fix it all, but I have to, I can help it be as good as possible.

Susanne White: 9:29

And that’s brilliant cuz I, I, and I mean, that’s, that’s amazing. And it’s a great mantra because I think that so often, you know, especially for new caregivers, there’s this fix it thing we get into. And I mean, you can’t, I mean, you can’t fix anyone in life, the only person you can fix is yourself. And even then that can be, you know,

Rayna Neises: 9:50

Quite a challenge.

Susanne White: 9:52

Yeah. You know what I mean? But you, this whole, we kind of get into this, fix it thing with the best intentions. I mean, all of, all of this stuff is all. You know, walking each other home, you know, I mean the intention is to walk each other home and, and, and really take care of those we love. Sadly, I think that, you know, we really feel responsible and try to fix them. And it’s really important to be aware of that and to understand it’s not about fixing it’s about being there and walking them home. And it, it took me a minute. It took me a. To really figure that out and to sort of change. Yeah. Caregiving changed the person I am. I mean, the therapy or, you know, I’m sober 35 years. So all my 12 step, all of that was great. But caregiving was the thing that really brought me to the table to look at me and changed who I was, you know, that my, my, my Fixit urges and my controlling, or my perfectionism or fear of failure, had to go out, had to go out the window.

Rayna Neises: 10:54

Had to right.

Susanne White: 10:55

Had to go out the window, you know, because I, I needed to be soft. I needed to be soft and calm and open and vulnerable, all, all of which I wasn’t allowing myself to be before caregiving, you know, but if I was gonna be the best case, you know,

Rayna Neises: 11:13

That’s a great way of summarizing it soft and kind and vulnerable. I mean, they need that so much. And when we come in hurried and controlling and wanting everything to just be a certain way, we can’t be any of those things.

Susanne White: 11:28

Right,

Rayna Neises: 11:29

Powerful.

Susanne White: 11:29

right,

Rayna Neises: 11:30

So you mentioned earlier your mom and you had this difficult relationship.

Susanne White: 11:35

Mm.

Rayna Neises: 11:36

tell me about how taking care of her was a gift or how did that change that relationship?

Susanne White: 11:44

Well, it completely changed. I mean, I, I, the gift for me was that I healed my relationship with my mom. I always say that I used to think we were so different and now I realize it was cause we were exactly alike

Rayna Neises: 11:55

Mm.

Susanne White: 11:56

you know, I mean, and we always had, you know, it was, there was always, we always had to have a last word. We were always at each other, you know, we always had to be right. You know, I mean, and in caring for her, I was like, do you wanna be right? Or do you wanna be happy? you know, I mean, like, so, and she wasn’t gonna change. I mean, I was smart enough to know that she was gonna change, but then with dementia, I mean, there was no way she would, even, there was no way she was gonna change and just the way we were going at each other and how, how upsetting it was. I had a change, you know? So the gift was me being able to reframe how I dealt with the baggage of my childhood, how I was dealing with her on a daily basis, and being able to really see the person she was or the person she was in the moment, and not bringing like the 16 year old me to the table.

Rayna Neises: 12:50

yeah,

Susanne White: 12:51

What good was that gonna do? Do you know what I mean? I was really lucky cuz I had a moment, you know, that really really worked for me in that I, I had a big calendar on the refrigerator, you know, where you write in the dates and the times, so we can all stay on the same page. And I came around the corner and she wasn’t like expecting me. And she didn’t really notice me. And she was standing there with her finger, like pointing to a date and I could just see, she couldn’t make the connection to what that meant or what it was, my, my, my powerhouse, you know, organized, take care of everything, mom completely lost. I mean, she was just completely lost and her life, she was so frightened and it was like, it just hit me. So, and I was like this, if this was a stranger, I would be so kind to her.

Rayna Neises: 13:37

Mm

Susanne White: 13:37

This isn’t a stranger. It’s my mom, you know, so I, that opened the door to my compassion, empathy, it was like shock, you know? And it still was, you know, it still wasn’t pretty, but I still was able to just stop and just start over. Just hit the restart button with her. And like I said, it wasn’t always pretty, but I mean, it just gave me a different set of tools to deal with her. It was amazing.

Rayna Neises: 14:02

What a blessing. And just to have that moment of clarity, that really just brought it all to a point where you could see what you needed to see, to be able to do it differently.

Susanne White: 14:13

Mm. Yeah, it was amazing.

Rayna Neises: 14:16

Caregiving Warrior, why are you attracted to that?

Susanne White: 14:20

Well, I was attracted to that. I think part of it was because I, I look at the service my dad gave and, and so many of that generation, but I thought, you know, we go to battle every day. Caregivers If it’s not the healthcare system, you know, or the insurance, it’s getting that appointment or it’s that nurse that’s kind of snarky that you gotta like, be your best friends so that you can get what you need out of her or, or, you know what I mean, or navigating the emergency room or the medication. It’s like a battle, you know? And like our enemies are all these little things, and we, and we’re warriors. I mean, caregivers have unlimited kindness and compassion and resilience. I mean, it’s just, and, and we’re doing, we’re fighting every day for our loved ones, so they can be, feel safe and sound. And I just thought we’re warriors, we’re caregiver warriors, and it just felt like really, right. I just loved it.

Rayna Neises: 15:16

Yeah, I love that too, because I think oftentimes as a caregiver, you don’t see yourself as a warrior and you probably don’t realize why you’re so tired because you’re so busy in the battle every day. And that’s the norm that you kind of forget you are at battle and you’re tired because you’ve been battling.

Susanne White: 15:39

Absolutely. You know, and even Superman and Superwoman take their capes. You know what I mean? I mean, and, and most caregivers don’t even know their caregivers. I

Rayna Neises: 15:47

Yeah.

Susanne White: 15:49

like that’s so, so amazing to me. But yes, I mean, you, you have to realize you’re, you’re battling all day and most of the night, in most cases. All day and all night, it doesn’t stop, you know, you’re, you’re on the battlefield.

Rayna Neises: 16:06

You mentioned, and I always, I thought of that immediately as well, is that most people don’t identify as a caregiver. So putting that label on then gives us a better understanding of what we need and what resources are out there. I think taking the label of warrior can do that for us as well. It can help us to really see that we are in a battle and that it’s okay, that we’re tired and that we are maybe realizing that we need to be battling certain things, but who we’re caring for doesn’t need to be that person. They’re actually in this battle with us fighting alongside us. So that we aren’t fighting each other because it sounds like in the beginning you experienced that fighting against your parents and eventually learned how to all be on the same side and fight together.

Susanne White: 16:52

Yes. And I, I, I think that’s really a really important point. That, that we’re a team. We’re a team. You know two, you know, I had a friend who had Lupus, who she passed from Lupus in complications, and it was just, you know, and I, I was blessed with a conversation with her as I was driving on the Jersey turnpike and said, well, how do you feel about the people that care for you? Whoa, I, we were, we were friends from college, I said, man, I got an ear full, you know, and it, it, it, it showed me. You know, the thing that upset her most is that she felt quite often she was wasn’t consulted or wasn’t part of the conversation, which annoyed her. So, I mean, it, she, it was fury infuriating for her. So that really kind of helped me realize that, the more I couldn’t include my parents in any way, shape or form the easier it was for us to work together and for me to get what I needed for them. Even if my mom didn’t understand necessarily what I was trying to do or the decision I was making, how I approached her, the tone of voice that I used, the fact that I discussed it in front of her, that I included her in the conversation, all of that was, was really helped me and helped my relationship with her cuz she, she felt heard.

Rayna Neises: 18:12

Yes and seen. Yeah, so important. I love Teepa Snow says, We’re not doing this to them. We’re doing it with them. And that again, just helps us to remind ourselves we’re all In this together. We’re doing it together. We’re not doing it too. And all of us would feel completely invisible if everybody was making decisions for us and never talking to us or with us about them. So such important.

Susanne White: 18:40

Yes, really. And, and, you know, my mom was, was very proud, independent person like somebody else we know. And you know, I mean, just, you know, just the thought of needing help was, was so painful for her. My dad had a much much more easygoing, open personality. You know, it was really hard for my mom to ask for help. It’s hard for me to ask for help. You know, I had to sort of see myself in her shoes and realize that anything I could do to, to make that transition easier, you know, or to make that adjustment easier. I had to give her space and time and, and re and respect. I had to understand. It was very difficult for her to ask for and get help, you know, so I had to be really delicate around it.

Rayna Neises: 19:32

Hard hard journey, but so important. So many blessings throughout it. Caregivers, I just wanna encourage you if you, aren’t seeing the blessings to take a few moments and look for ’em because they’re there. Every day there are things we can be thankful for and having the practice of being thankful for them daily will help change your mindset and really help you to see more of them. So tell us a little bit about your book and where we can snag it once it.

Susanne White: 19:58

Oh, thank you for asking. I’m really proud of it. It’s called Self Care for Caregivers. It’s coming out September 6th and it’s covering four areas that I thought were really important. Emotional, Physical. Spiritual soul and then the Practical side. So it’s sort of thing. You know, things that I found that really worked for me sort of mistakes I made and things that I changed and strategies, I, I came up with to take care of our emotional self, to make sure that we took care of our physical self, our spiritual self, and then some practical ways to get organized and stay that way. 140 things that I really feel are great hacks for caregivers. To use and mindsets around them. You know, it’s really important to practice self-awareness and practice self love, and then self care.

Rayna Neises: 20:48

Definitely sounds great. So congratulations on that. And I know our listeners will be really excited to be. Pick up the, that wisdom sounds like it’s kind of bite size with 140 of them. It’s probably something they can pick up and just read a little bit here and there in the midst of all of the crazy.

Susanne White: 21:05

Exactly. That’s exactly what we wanted to do. You know, you can sort of pick it up and just grab it and pick something right there because pretty much everything that’s in there they’re gonna be able to relate to because I, I went through it, you know? So that’s kind of what I’m hoping. I’m hoping that it’s a book on the run that they can count on, you know?

Rayna Neises: 21:22

Great. So an available at all major retailers.

Susanne White: 21:25

Absolutely. And you can check my website now. And pre-order, if you’d like all the information is there and my website is Caregiver Warrior, and I, I love people to go there and just sort of move around and let me know what you think and leave feedback and comments. I love to talk to people.

Rayna Neises: 21:42

Great. Well, thank you so much for joining us today. It’s been a pleasure to be able to gather some of your wisdom and to learn a little bit more about your new book.

Susanne White: 21:51

Aw, thank you so much. And it’s always great to talk to you because I always learn something and I think that’s, what’s so important about sharing our stories with each other. There’s just so much wisdom and wonderful things we can learn from each other. So, and thank you for your work you do.

Rayna Neises: 22:05

Well, thank you. Just a reminder, A Season of Caring Podcast has been created for the encouragement of family caregivers. Be sure to consult your local professionals if you need financial, legal or medical advice and take heart in your season of caring. This episode of A Season of Caring Podcast has been brought to you by No Regrets: Hope for Your Caregiving Season, a five star book available at all major retailers. Teepa Snow, founder of a Positive Approach to Care shared. “Every page of Rayna Neises’book is filled with wisdom, compassion, and profound insights. Reading it is like walking alongside your best friend, only this best friend has embarked on the journey before and is now alongside to support instruct, encourage, and motivate you. Her intentional approach to caregiving will broaden and deepen your own experience, enabling you to also discover the joy and satisfaction in caring for another. In No Regrets, Rayna going to shares the beautiful, heartfelt story of caring for her parents and her passion to assist other caregivers.” If you would like to pick up a signed copy of no regrets. Visit no regrets-book.com and purchase a special bundle I’ve created just for you.