Susanne White 2/25/25

(This interview has been edited and condensed for length)

Zack:  Let's start off with your caregiver journey. I know you have an incredible caregiver journey, and you’re actually kind of like me. I got drafted involuntarily into the role by complete surprise. So tell us about your caregiver journey.

Susanne:  I love that you were drafted. My dad would love that terminology because… he was drafted. He was in World War II. He got so excited to go to a war that he locked the key to his trunk in his trunk at college, because he was so excited to get going. So he would love the draft.

My caregiving journey started with a phone call. My sister lived in Florida and I'm a Jersey girl. My parents lived in South Jersey, and I was working in New York City. And they were getting older … and we flew them down to my sister, she entertained us for the holidays every year since my mom and dad were getting a little bit older. They had flown down ahead of me. And I got a phone call from my sister, she kept calling me, and I was like, why is she calling me?

I picked the phone up and she said that dad is in urgent care. They had to take him off the aircraft because he was so exhausted and sick, and he couldn't walk … This was our stoic, six foot tall, World War II bombardier, hero dad, who was actually shot down on a 69th mission … and landed the plane. Anyway, the bottom line of it was they [my parents] met after my mom had lost her fiance in war maneuvers, and my dad was injured… so they kind of met and bonded. My mom always said they sort of fell in love around their grief… They were working really hard together, to keep from my sister and me that my mom had the beginning stages of dementia, probably. And that my dad's heart… preliminary issues that weren't too serious at the time, were escalating and he was burned out.

Zack:  Were they living alone?

Susanne:  They were living alone. And they made a really smart move. They sold their house. They went into a senior apartment situation, which was not assisted living, but it was with a wonderful community….. They were doing great. So when my dad got sick and I flew down, we could see that my mom was not really confused, but she was sort of confused and kind of repeating herself.  And he was just exhausted. I just said to him, “Hey, Dad, what's going on?” And he said to me, “Oh, well, you know, she's kind of forgetting things, and it's getting to be kind of hard. And I'm like, “Well, do you want me to help?” And he said, “Yes!” so fast. I was like, “Okay, of course. Good. I got it.  Yeah. I'll help. Absolutely.” Having no idea what that meant or what they needed…  they didn't even know what they needed.  So there was the “caregiver warrior.”  For the next almost five years, I was working full time and taking care of them. So it was sort of a twenty four seven, seven days a week, journey. You know, which was the hardest and the best thing I ever did.

Selma:  I remember reading something you said about your mom, not giving in right away to your help, fighting you every step. How did you care for somebody who didn't want your help?

Susanne:  Well, not only did she not want my help, we didn't get along. I used to think that we were so different, but we were exactly alike…. Because of my caregiving journey, I always tell caregivers if they can, if they're reluctant, to just do it because there's a potential to heal that relationship. I healed my relationship with her. It wasn't easy. It took a lot of work, but I actually healed. I just started to see her, especially with dementia, as another human being that was suffering…. If she were a stranger, I'd be extremely kind and patient.

So, I think to answer your question, I had to learn that the softer I got, the more I was able to say, do I want to be right or do I want to be happy?... I had to look at that and say, stop. Give her a break. She has dementia for Pete's sake. So, there's a lot of that pushing myself and nudging me, and then it was amazing to actually notice that when I was soft and gentle, she was so much easier to get along with.

Zack:  Susanne, thank you for sharing that. You mentioned you were working in New York City when you got drafted as a caregiver. Tell us what that was like, and did you share things at work? Were they supportive? We’re here to learn from our experiences.

Susanne:  I was a personal assistant to a private family. I thought about it a lot because that kind of position, people depend on you for their livelihood, basically, and their well-being. So sort of a caregiving situation too…. I realized that for me, personally, I wanted to share what I was going through because I just felt it was going to give me a leg up on the situation. It didn't necessarily give me any more freedom than I ended up having, but I just think I made the decision that I was going to be honest about it.

 I know there's a lot of people who don't necessarily feel safe to tell their employers, and I think that's an issue for companies. I think we need to get rid of that stigma. Whenever I do an ERG or whenever I talk to caregivers within a company, I always make sure that they allow people to join anonymously. Because sadly, people are afraid. 

Zack:  Why do you think that is?

Susanne:  Well, I think we're afraid of losing our jobs. I think it's real simple. I think that we worry that our employers feel that we're going to be compromised and can't handle both duties. I think that the best employee you could possibly have is a caregiver. Right? I mean, we're overachievers.  We use all our skill sets. We grade in crisis management.

I couldn't lose my job. I financially needed that job to take care of them… they were on a fixed income, and my mom did really well with it. But… expenses escalated. You go in there, and it's like, wow they need a new bathrobe. And that's another thing, another conversation about making sure that you stay on a budget for your income. But, they want that extra tin of cookies. So, I needed that job. I couldn't lose that job. So, I think I was nervous. I think I was nervous that  people would think that I couldn't take care of them. But I made the decision that I was going to tell them just in case and appeal to whatever empathy they would have when I needed it.

Zack:  Which, apparently you received.

Susanne:  I think to be very honest with you… I could have been more honest about it. I think I put myself through more pressure than I needed to. I think that I didn't communicate as well as I could have, but that was me being a perfectionist….

Selma: In your caregiver's guide you made the statements, “Be as kind to yourself as you are to the person you're caring for. Be compassionate to yourself.” Can you talk about that?

Susanne: I think just in general, we get so focused on the needs of someone else and … it's critical that we're as kind to ourselves as we are to them. I was so hard on myself. The guilt and the shame, if I had to ask for help, I'm a bad caregiver… the shame we take on is just excruciating and so unnecessary and so damaging and takes our energy. 

Zack:  How do you suggest we stop it or do less of it?

Susanne: Well, I think the self awareness thing is really important. And having people to talk to… that you can get feedback from… to have other caregivers in my life and therapists and groups and literature… having them call me out and say, “Stop! We're all human”….

.Zack:  You mentioned that you speak to ERGs. You speak to organizations. What is your experience in doing that in terms of reactions to some of the things that you're sharing?

Susanne:  You two are going to understand this. No matter how many of us are out there having these conversations, sharing our stories, the same thing keeps coming up…. I feel so guilty, especially in work…. I feel like I'm not doing my job to the full extent. And then when I'm at my job, I feel like I'm not taking care of my parents.  Right? So they have this double edged guilt sword. So it's this constant beating themselves up about their responsibility and their duty and… trying to find a place with that or a safe space with that, or how do I get support for that, or how do I stop feeling that? I hear that a lot.

Selma:  Do you find it different where the caregiver has shared their situation with their employer? Does that provide any alleviation from the pressure of the dual responsibilities?

Susanne:  I think that's the perfect word that you used. Does it alleviate? Alleviating some of the pressure. I think for most people… if they're upfront and they get it and they get support, I think that's really important…. As an employee, you have to feel safe to be creative. I think employers have to create that kind of an environment anyway. And then, when you have caregivers, I think if they feel that they're supported and … they're understood and they're not going to lose their job and that there's resources for them, I think they're extremely relieved…

And if they're offered conversations, you know, in support groups or sharing their stories or having an ERG or having somebody taking a half an hour and having somebody come in like me or like you to just sort of say, hey, here's some thoughts on this. And… they can ask questions or they can say, “Hey, me too.”  I think the “me too” is really important. And I think when employers offer the situation for caregivers to hear, we got you, me too, I think it's tremendous and it's so smart because they're going to bend over backwards anyway, but now they feel even more like they want to bend over backwards for their employer. Not out of fear, out of gratitude.

Zack:  Can you tell us a little bit about what it is exactly you do as a caregiver coach? And then also, how has your experience helped you probably be one of the better caregiver coaches out there?

Susanne:  …I started journaling when I was taking care of my parents. I used to be a songwriter. I love writing. I just started blogging. And I had to ask… can I be really honest about this?... You've made so many mistakes, but you kinda came out of it, and it was like the best experience of my life… Learning more about myself made me a better me. So I just started blogging really honestly and authentically …. The more honest I was, I think the more people related to it….

I was then asked to write a book, which I was blessed to do, and people started asking me to speak for them. So I'm a keynote speaker… and I am now getting much more into content for working caregivers because I think corporations and companies see the value in that… there's so many employees now, caregivers … the numbers are really starting to get up there…. 

Selma: You've identified your sister as your caregiver, if the time comes. What would be your words of wisdom to her when she first steps into that care role for you?

Susanne:  I think my advice to her would be communicate, communicate, communicate. I think communication, really in-depth communication with somebody you care for, even though it's really hard and it can be snarky and difficult and scary. I think the more we talk about it, the better it is…. I think that's the biggest thing. When we get it all out on the table…. If we go around and hold it in, it's not good.

Zack:  Tell us how people can find you.

Susanne:  Caregiverwarrior.com. Caregiver warrior and all across social and Amazon, and it's all there.

Zack:  You're very good about being consistent on LinkedIn, so we encourage our readers to also check you out and connect with you on LinkedIn. Thank you so much, Susanne.