The Messy Middle of Caregiving

Susanne White is the founder of Caregiver Warrior. She was faced with the opportunity to care for her parents and embarked on a caregiving journey that would change her life. She ventured into this journey with a true cargiver warrior spirit and uses that same spirit to empower other caregivers through their caregiving opportunities.   

This episode is filled with observations that Susanne made of herself and what she was going through - both in her caregiving and her recent brain surgery.  Her brain surgery is teaching her a lot about the healing process and as she adjusts to her new normal, post-surgery, she is exploring ways to impart new lessons to others.

She blogs about her journey on her website, caregiverwarrior.com and shares her experience, strength and hope with others so that they too may navigate caregiving with grace and empowerment. Susanne’s latest book, Self-Care for Caregivers: A Practical Guide to Caring for You While You Care for Your Loved One, is now available at your favorite book stores. Visit caregiverwarrior.com for more information from Susanne White, or follow her on X (formerly Twitter), LinkedIn, Facebook and Instagram and don't forget to check out her Weapon of the Day!

Transcript

Thank you for tuning in to the Island Treasures podcast.

We value the insights shared by our guests and hosts, but it's important to note that their personal experiences are intended to inform and encourage, and not to replace professional, legal, or medical advice.

With that, we are ready for today's exciting episode.

Welcome to Island Treasures, a place for caregivers to hear encouragement from other caregivers who, by sharing their experiences, offer helpful information and resources for your caregiving journey.

I am your host and caregiver consultant, Alison van Schie from beautiful Vancouver Island in British Columbia, Canada.

And before we dive in to today's episode, I want to let you know that Island Treasures is set up to receive fan mail, so you can text the podcast directly through the link at the bottom of the show notes.

If you've ever doubted that you're a good caregiver, today's episode is just for you. My guest has been through the ups and downs of caregiving and is now a true caregiver warrior.

When the opportunity to step in to care for her parents presented itself, she dove right in. And from that day forward, her life changed. She chose to embrace her journey, and daily she utilized her ultimate weapons of love and personal courage.

She is all about empowering other caregivers to prepare them for their caregiving battles and to win those battles. Let's hear more about her journey, her strength, hope and humor. Please join me now as I welcome Susanne White, the Caregiver Warrior.

So today, I have Susanne White with me, and I'm thrilled. So welcome, Susanne.

Thank you so much. It's so lovely to be here.

Well, it's lovely to have met you in person, well, in person over Zoom. We worked together back in the days of the Self-Caregiving Strategies podcast because you were one of the sponsors of one of the episodes. So it was fun working with you then.

And now I get to meet you and spend time with you.

Absolutely. And that was a wonderful podcast. That was a great series.

It was.

Fabulous series. And still being appreciated by many caregivers. And it's on a topic that's very dear to your heart.

Self-care for caregivers.

Yes. Yes, yes, yes. The very difficult journey that we seem to all have as caregivers.

Looking after number one.

Prioritizing number one.

Yeah.

So let's talk about what got you to be so wise as a caregiver warrior. Let's talk about your caregiving story.

I don't know. I think I became wise from my mistakes probably. I don't think it was the journey itself.

I think it was all the times they screwed it up that made me smarter. I don't know if it made me wise or not, but it made me smarter. So I took care of my parents.

I had my mom who had dementia and my dad who had manageable heart issues until he didn't, until they weren't manageable anymore. And the two of those little stinkers were hiding from us. The fact that my mom, I mean, they worked really well together.

They had an amazing relationship. I didn't have a great one with my mom at the time, but they had a great relationship. He was a World War II hero, Bombardier pilot.

He was wounded. He had scars from his ankles to his butt. And she took care of him.

I look back now, I realize she was a caregiver warrior, to a warrior, and they bonded over that. They bonded over people. They were whatever.

So they were really close. So they were sort of joined at the hips. So sure enough, they were hiding from us that she was starting to be in the early stages and that he was failing and getting really, really tired.

And we all used to go to Florida at my sister's for the holidays as my parents got older. And my dad collapsed on the plane, and they had to take him off the plane in a wheelchair.

It's not funny, but because he was so burnout and his heart, he was starting to affect everything. So as the one in the family who shows up, my sister was wonderful, very supportive, but I was close and I was the big sister.

I said, hey, do you need help? And my dad said, oh yeah, Supi, you can help me, right? Oh yeah, yeah.

So I said, okay. And there it was, that's the caregiver. Okay, I'm showing up.

There it is.

And you'd never been a caregiver before?

No, not in, no, not to this extent. No, I mean, I think caregivers are born caregivers. I think we're hardwired.

You know, those of us who are caregivers, I think we're born that way.

So I was very codependent and took care of people all my life, but I was a people pleaser, but not to this extent, not where it was such a huge shift in my life and my world and their world.

But he didn't skip a beat in saying, yes, he wanted help, which is really, really good.

He was the best. He was, I had direct opposites. I had my mom who I didn't get along with at all.

I mean, we were just, we fought.

For the minute I could speak up for myself, we were at each other's throats and trying to get the last word, you know, and I jokingly say that I thought it was because we were so different, but it was no, it was because I'm my mom.

I mean, I'm exactly like my mom.

I would have predicted that just the way you're describing it.

I get that now, you know, and I also get how wonderful and amazing she was. And through this journey, I healed. So it was amazing, but she was not having it.

She was like, you know, she's like five foot tall, Irish Catholic, you know, just you took care of everything. She ruled the roost, and he was really laid back and everything was okay.

Whatever you say, whatever you say, you know, and he was just the polar opposite.

He was just, and I guess that's why he survived what he went through in his life, because he was just easy breezy and that the glass was always half full, and it helped me so much because he was so appreciative and told me, like I still have a memory

of a hug he gave me once, you know, you were so special. I mean, I could tear up thinking about it. But so he was great.

Now, I'm not saying that there weren't issues there too, because when the child becomes the parent, and the parent becomes the child, that's very big, and nobody kind of warns you about that. So anyway, so I jumped in with both feet.

Yeah. So were you there when he got off the plane? Were you with him on flight?

No.

And that's because that was pre us knowing they were still working together to hide it.

So they flew down, and I was scheduled, they flew down to Florida to my sister's, you know, a couple days before me, I was still working full time, I was working full time, the whole time.

And then my sister went to meet the plane, you know, to get them, and it was an issue, you know?

Yeah.

He was exhausted. He had walking pneumonia, and his heart issues had gotten much worse. He had passed out, like, you know, four or five weeks earlier, didn't tell us.

Oh, yeah.

The signs were there, but nobody was seeing them because they were hiding them.

We weren't seeing them, you know, because I didn't go down as often as I did. I was on the phone a lot because my mom and I were, you know, we weren't happy to be around each other too much. Oh, I wasn't, you know, happy to be around her.

So, you know, I mean, they really had their act together. But when he got sick and then he wasn't, you know, and he was sleeping so much, we could kind of see that she was sort of repeating herself. And I could see he was burnt out.

I mean, he looked horrible. So, yeah, he said yes right away. So, I was like, okay.

And then I said I was going to do it by myself, because I could handle this. I was going to do it perfectly. And I was going to do it right away.

I was going to fix everything.

You had unachievable goals, but well done. You did have goals.

Yes. Yes, that's a very positive way. I had goals that were heading me right towards disaster.

You know, so I learned a lot. I learned a lot. And, you know, six to eight months later, because I was working full time and then commuting and staying with them, and then, you know, in the beginning, it just all hit me, caregiver burnout.

So I had to make some adjustments. And it's that journey that I went through of making the adjustments and figuring out what, you know, was going to help me take care of me because they weren't going to change.

I mean, they were going to change, but not in what was personality wise, or my mom was never going to change. So I had to.

Yeah, and they weren't going to change health wise for the better, unfortunately.

No, no. And I think, and that's great that you said that upfront here, because I think that's, you know, it's this whole thing about we're going to fix it.

You know, we're going to, that third thing for me that was going to fix it right, fix it and fix it right away. It's not about fixing anybody.

It's about walking them home, you know, being supportive about, you know, but this whole thing, my whole life, I tried to fix everything.

Walking them home.

Walking them home. That's it. I won't take credit for that.

That's a Buddhist. Yeah, we're just walking each other home.

Wow. Oh, that's a good one.

Me too, right?

Yeah.

Me too. But that's true. I believe that.

I mean, I believe that with my soul. So it's hard to remember that a lot of time. But you know, I mean, that's really what it's about.

And we're blessed if we have somebody walking with us, and we're blessed if we can walk with somebody else. It's an honor, you know.

Well, he trusted you implicitly.

He did, you know, and that's very interesting that you're saying that because I don't think there was a question ever in his mind because I'm a Type A personality, you know, I'm very independent and very capable of, you know, I question myself a lot,

but I mean, I appear to be really capable. And part of that was because my mom was so hard on me, you know, I didn't want to, her criticism, so I was, I tried to be as perfect as possible. So I think he could see that I was capable.

But interestingly enough, he said to me during that journey, he said, you know, he said, gee, Supi, I, you know, I really see how you tick now. Oh, yeah. And I said, what do you mean, daddy?

He said, oh, I see how you operate. He said, you're something. And I said, I like it.

Oh, yeah.

You got a lot of accolades from your dad by the sound of it. I did.

I did. I did. And I got them from my mom at the end too.

I got, you know, it was an amazing, you know, people ask me, oh, should I do this? I don't get along with my, you know, and I hear that a lot.

And I empathize with people who have been either abused or traumatized in their childhood, that it's just not possible. I completely empathize and understand. I get that.

But I think there are times when people say to me, oh, you know, I can't do this. I don't get along with them, you know, where I just have to try and say, if you can do it and you can bite the bullet, there's a gift.

There's a pot at the end of the rainbow. I mean, there is a gift. I mean, I never thought I would heal my relationship with my mom or be able to be a better me, so she could sort of have some space.

Do you know what I mean? I never thought that was going to happen, and it did.

That's incredible. What a gift. Before she passed away, you had healed your relationship with her.

Yeah.

Yeah, I stood at her grave. Yeah, that was something that I was sort of... You have pre-grief, right?

So you worry about losing them. That can be a very silent killer, the pre-grief. And I said, you know, I want to be able to put her at rest and be at rest and be at peace, you know?

So it's cute, you know? And it happened. I mean, I can see myself right now standing there, and it was.

But it is okay when caregivers cannot.

Absolutely.

Yes, absolutely. And as I said, I empathize on that, you know what I mean? And here's the thing about that.

May I speak to that for a moment?

Please do.

It's absolutely okay. In other words, it's all okay.

I think, you know, I had someone say to me, you know, I was giving a speech, and I had someone say to me who felt really bad about taking a couple months, like after she put her husband in an assisted living, because that had to happen.

She could no longer care for him by herself. She said, I just disappeared for, you know, a couple months, and I didn't talk to anybody on it. I just isolated, and I said, because you were supposed to.

Like, she said, what do you mean? I said, obviously, you needed to do that, and you were allowed. Like, that's what you needed to do then.

She goes, oh. And I think those of us who struggle with our relationships, just in general, that's okay. It's all okay.

There's no rule book. You know, I wish for everybody to have peace, but I think, you know, you have to have grace with the fact that you might not have peace. Maybe that's what's meant to be.

And grace towards yourself.

And grace towards you, that it's okay.

You know, I hear that a lot, too.

Like, I don't want to do this. And it's eating away at them. But there are other options.

So let's explore those other options.

Right.

Yeah.

And again, it's the shame and the guilt around all this. You know, we're all different. You know, I think we're all on the same journey, but I always say we have different paths.

Like, we're all different. And I think we all have different skills. And, you know, like some of us can delegate really well, as opposed to doing it ourselves.

Do you know what I mean? Like, you know, I mean, I have a really hard time delegating. When I do, like, I'm micromanage, you know, like, you know?

And for some reason, there's this guilt and shame that that's not as good as somebody else's way of caregiving.

And that's unfortunate because you yourself might feel better about the situation, and your care recipient might feel better about the situation if you're not the one that's hands-on caregiving for them.

They might appreciate that other person that you're delegating.

Absolutely. Nobody wants a snarky caregiver. And I mean, they know, no matter what it is, even my mom, even whatever stage she went into when she was slipping away from me.

Like, they know how we feel. Like, it's an energy. Do you know what I mean?

You cannot hide that from them.

No.

And they feel guilty that they, I mean, my mom's biggest challenge was that she had to depend on somebody and ask for help from somebody, especially me, you know. She hated it. So had I not, like, anyway, I just think we all do what we can do.

And it's fine. There's just, there's no judge or jury on this.

Yeah.

You know, we all show up in different ways, and it may be to delegate to someone else. And have the brave, the courage to do that. That's courageous.

I always say my sister still feels guilty about what she wasn't like hands on, right? To this day. And I always say to her, look, I told you when it was happening that I had it, which I did pretty much, support me, which she really did.

And there will be a day when I call you up and say, get your butt on a plane right now. I need you. And sure enough, that happened.

She did it. She got her butt on a plane. She was there in three hours.

Yeah.

She did what you needed.

Yeah. Exactly. And I think that she's braver than I am because she let me do it.

Like, you know, I felt better because I was in, because I'm not such a control freak, right? So how brave was she? Did she let go of the control?

Yeah.

Like she was a better caregiver than I was, I think.

Have you told her that?

Yes.

But it's not enough.

Yeah.

You know what I mean? She's still, I mean, I tell her all the time, no, no, I didn't show up. I did not.

You took care of everything.

Funny. That's perspective.

It's all perspective.

So you're talking about Courage. Yes. And you call yourself the Caregiver Warrior.

Yes.

So let's talk about how you came to that name for yourself and all that's involved with what you do now.

Well, this is going to be a three-hour podcast, by the way.

Yeah. And I will talk forever with you because it's so easy, breezy, and it's so much fun and so interesting. So just shut me up whenever you want to.

Well, I wanted to get a name for the website and the initiative and whatever. And to me, caregivers are warriors. My dad was a World War II vet.

I have a lot of people around me who were warriors. And warriors go into battle every day to protect those, and the freedoms and the safety of their loved ones. I mean, they give up themselves every day to the point of death, really.

I mean, they do everything they can to protect those they love. And I thought, you know, that's what caregivers do. And they will not be broken, and they will not lay down, and they will crawl.

Myself, we've all done it, we'll crawl. You never see a white flag with a caregiver.

Oh, you have such amazing quotes. Like, you just come up with amazing pictures, word pictures.

But it's true. You know, you don't see a caregiver, oh, six months, I'm out of here. I'm going to...

No, dearie, so I mean, they give their lives up, just like, you know, our warriors, our military warriors do, really. So I thought that's apropos.

And I had a dear friend of mine say to me, I don't kind of like that, you know, it's kind of tough for the caregiver. And I said, yeah, it is, because caregiving isn't unicorns and roses.

I mean, caregivers are tough.

They're tough. And it's a battle, and it's a war. You know, we're fighting this war every day in multiple battles on multiple fronts, you know, to make sure they're safe and sound.

Yeah, it'd be nice to see that battle get won.

The warrior wins.

Yes. And I think it happens all the time. I think there's wins and victories every day.

And the first one being that we showed up and we got through the day. Do you know what I mean? I think there's numerous victories, silent victories.

And I think hopefully our work will remind caregivers of that, you know, not that one thing that happened, that one mistake that happened that day. How about the 14 other things you did for them?

You know, the dressing the wound, the doing the pills, calling the doctor, going to emergency room, changing the urine bag with a smile and a joke. Do you know what I mean? There's amazing victories there.

We don't celebrate them.

Well, and I'm seeing, you know, like the end of a battle, there is a huge celebration. And I'm just thinking that the caregivers need to have that celebration. Maybe at the end of each day, they make it through.

I agree.

A parade, something magnificent.

That's so funny, because in my book, I literally have a, because it's 140 self-care tips.

And I believe it's, have a parade.

Oh, cool.

That's perfect, right? Like at the end of every day, have a parade. You made it through, you know.

So your book.

Yes.

And is your book out now?

Yes.

So let's talk about that.

And it's called.

It is called Self Care for Caregivers. And it is actually on Amazon. And it's been out a little bit now.

I lost a little bit of track on it because I had an operation. So anyway, it came out almost a year ago.

Oh, okay.

Yes. Yes, yes, yes. So it's Self Care for Caregivers.

And it's 140 self-care tips. And what's lovely about it, and of course, as I was writing it, of course, it made sense, but that there's one tip on a page. So in other words, of course, when I was writing it, that's what I did.

But they did a beautiful job. It's a hardcover book. They did a beautiful job and they put one tip on a page.

So it's great for caregivers, even to put it by the bed. And they can just scroll. My goal is that to scroll through and they can find something like anything they need.

It's just a quick sort of like, hi, are you okay? Try this. And 140 of those.

And you were asked to write this book, were you not?

I was.

That's got to feel good.

It was amazing.

It was tough only because it was Simon & Schuster, it was Adam's Medias, which is Simon & Schuster. They came to me.

You brought my name.

I know. They found me through Instagram, the glory of social media, because they liked my short form, my short form writing, which is kind of good for me because it's not a tweet, but it's not a blog.

So they asked me to do it, but I had to do it in 90 days. Yeah. So I'll probably never do that again, but it was a great exercise.

And I literally was writing it when I was working in New York on the subway in the morning, I would do like a thousand words a day. Oh, wow. Yeah.

And what if you didn't get the thousand before your stop?

I would finish it at home, or work.

I was great, like halfway through, and anyone who's written a book, as you know, it's something. So but my friend said, well, you're just in the messy middle, just do it one sentence at a time. And I'm like, okay.

Yeah, that's wise too.

The messy middle.

The messy middle.

Isn't that life? There's a beginning and an end and a messy middle.

The messy middle. Most of my life is in the messy middle. It's that pretty.

I'm writing too many things down here.

This is great.

Thank you.

Like we're not even at the messy middle yet.

Yeah, we're not even at the messy middle yet.

Yeah. No, that's fabulous.

Yeah.

Oh, no, go ahead.

No, I was just saying that I think so much of my life in general is a messy middle. And then I think caregiving, I was constantly in the messy middle. It's just such an extraordinary experience.

I mean, I would just go in the bathroom and just wrap a towel around my head and just weep. So they couldn't hear me, and then wipe my face off and go back out. But I learned to let myself do that without feeling guilty about it.

Or I think that's my big, big, big, big message is, is just the shame thing that we can get ourselves into is just the devil. I mean, it's just we have to really be careful that the shame monster doesn't even enter our household.

And it's really hard because no matter how long I do this, no matter what the age of the caregiver, how many caregivers, no matter who they are, every single one of them doubts that they're a good caregiver at some point, or they feel it's something

Well, nobody's trained on how to do it.

And most people learn as they go along, and then they become caregiver consultants or caregiver advocates afterwards because they want to help people so that they don't have to go through what they went through. So yeah, messy middles of caregiving.

Yeah. And it's because your world's turned upside down when you're caregiving.

Yes. And I think the more, which is why I think the work we do is really great because I think we really need to get the word out that it's normal.

We need to normalize the caregiving journey, the intensity and the insanity of it, the craziness, the chaos. But my concern really is that we compound our emotions.

So like we're angry at ourselves that we're angry, or we get anxious that we're anxious, or we're resentful that we're resentful. I mean, it's the shame that's involved in all of that. It's the pressure we put on ourselves to be perfect.

Yeah, I was going to say it's that perfectionism.

Oh, it's the perfectionism and the expectations that we have.

On yourself. Yeah, on ourselves. I wrote a blog once that said, lower your expectations.

Yeah, and read that blog again.

Yeah, exactly.

And I mean, it's just the shame because making a mistake or feeling guilty is like, guilt is about something we did or we didn't do. Shame is like when we make a mistake, we think we are the mistake, right?

Or that if something bad happens, we are bad. So shame is about thinking that there's something wrong with us, and there's nothing wrong with us. The shame is no place in a caregiver's world because we're showing up.

And like I said, I believe they're miracle workers walking on Earth. I think they're angels walking on Earth, caregivers. And if you show up and you do the best you can with all your heart and soul, no shame, babe.

No shame.

No, you showed up.

But we're geared to it.

Yeah.

You know, a judge in jury.

High expectations.

Yeah.

Well, that's our takeaway today. No shame. No shame allowed.

And I'm envisioning the big X across the road sign. No shame allowed here. Yeah.

So Susanne, let's talk about your weapon of the day, which I think is a brilliant idea. And that's what I first was introduced to before I even met you, was your weapon of the day for caregivers. And you release them every day.

I do.

I do. From Monday, Monday through Friday, I do a weapon of the day every morning.

Yeah. So what was today's?

What was today's? I have to actually think about that. People say to me, how do you get whatever mood I'm in in the morning?

And whatever I'm going through in the morning, that's what I post. It helps me to kind of, yes, the weapon of the day is when we care for others, we might get lost in a storm for a while. There's no shame in being lost.

The storm will pass and we will find ourselves again.

Brilliant. Look at that. The word shame went into today's weapon of the day.

Yeah. I love that. Because it's a way of venting as well.

It's a very productive way of venting. Like you say, it's how you feel that day to help others.

And to help myself. That's why I always say to somebody, somebody say to me, I loved you up in the day. And I said, yeah, well, hopefully, I listened to it because I wrote it because I needed to hear it.

Like it's what I need to hear in the morning, guys. You know.

So would you consider yourself actively caregiving now?

I am. I have a family member that has bronchiectasis, and I'm sort of helping out with that, which is a chronic lung disease.

So she's very self-sufficient in working through whatever, but I'm definitely learning about it, and I'm a good backup if need be.

Oh, you're probably a really good resource right there.

Well, support, I think, is just about because it's a chronic disease. So my vision is the boat going up and down in the water. There's waves on that.

And I've also cared for another family member who had cirrhosis of the liver. So these chronic diseases are overwhelming. And bronchiectasis is not necessarily fatal in any way, shape, or form.

You can live with it, but it's something you have to live with. And it's pretty intense.

I've not heard of it.

Yeah, the airwaves are... And this is my take on this. This is my opinion about this.

I have to do a disclaimer. But your airway passages are larger than normal. So bacteria that you normally flush through your system, that you and I flush through our system, and very normal things like water and dirt get stuck in there.

So then they fester. So you gotta sometimes go on like major doses of antibiotics for like 18 months at a time. Yeah, it's, and you have to do airway clearance twice a day.

It's definitely a challenge.

So support, you know? Yeah.

Oh, thank you. Thank you. And yeah, and then I have other friends that are, you know, that are going through things.

So I try my best to be supportive in any way, shape, I can be. And that's sometimes all it needs is like, hey, you know, like, I'm listening.

Yeah. Let them know they're not alone. So what do you need right now?

In general?

Yeah.

Not as a job or anything, but you've given so much to others.

Thank you.

And what do you feel you still need?

I think there will probably be some kind of content from me about having brain surgery.

Okay. Let's talk about the brain surgery. That was the operation you were mentioning earlier.

Yeah.

Yeah. Yeah. MRI on Saturday and a phone call from a surgeon on Monday.

It was like completely, my balance was off and had been for some time and they were, so, vertigo and this, that, the other thing. And I finally, I was moving from New York to Florida.

And finally, I just said, because I was a caregiver advocate, because I was a caregiver taking care of people, I said, I want an MRI. So whatever we need to do, write me a prescription for an MRI. And I almost didn't go.

I mean, it was always like, I don't have to go. And then, I got to go. So yeah.

So it turns out I had a brain tumor that I'd had for probably 30 years. That was benign, thank God, back here. And they were thinking at the time, because anyway, it was pushing my spinal cord to the side.

Yeah. So nine hours on the table, and they got 94% of it. But the content would sort of be around the fact that there's not a lot of information about the healing process, which I think that...

I mean, my brain surgery is teaching me a lot. And it taught me a lot about healing, because of course, I want to heal right away. And you can be, and I was, up and running six to eight weeks afterwards.

I mean, I was walking around... I was out of the hospital in like two days, and walking around, I had to be careful on everything, but I couldn't walk a dog and stuff like that. But yeah, you're up and running, but you're not...

And I had a friend who also had brain tumor removed, who said, well, they fixed me, but I'm not the same.

Oh, yeah.

Yeah. And that's kind of, that's really sort of what it's like. There's a new normal, sort of.

And there's phases to it. And sadly, I think what a lot of us go through is this frustration and fear that we're not healing right, or we didn't heal right, because it just takes a really long time.

I mean, my spinal cord was like completely sideways. And now, so I had a doctor tell me recently that you're recalibrating. Like, it's not, you had it for 30 years, and it was growing, you know?

Like, there's a lot of, you know, so, that's a gift of many gifts of it, is that I'm learning about healing, you know? There's just healing doesn't have a time limit on it.

And it doesn't have a playbook.

Doesn't have a playbook.

And what a great visual with the recalibration, like that your body is recalibrating, your brain is recalibrating, you're recalibrating.

My soul is recalibrating. I mean, it was, you know, I mean, you tend to... I heard a friend of mine sent me an amazing podcast on Irish radio about actually a woman who was a singer and her neurosurgeon, and they did like a 15, 20-minute interview.

And two years. She was, you know, she's not doing a new album or whatever, but I mean, and he said a very interesting thing. He said that, you know, we all have a sense of immortality.

That's what keeps us in survival mode. You know, we're not going to die, you know. And when you have the shock of a big operation, or a big shock to your system, that goes away because it's like, oh my God, you know what I mean?

And you have to rebuild that. So sadly, you know, everything, you know, a hangnail becomes like, oh my God. You know, so it's really interesting to watch myself.

No, you're able to take a step back and observe yourself objectively.

I have to.

There are times when I have to, or I'm going to drive myself crazy, but you know, you worry. So I was always good at trying to, you know, I've always been on like self-searching. That's the kind of person I was.

I was always looking into philosophy and things like that. And I have a degree in psychology. But I mean, I always try to do that, you know, to be mindful, mindfulness and to step back.

And I knew that I could be a guinea pig, not only with that, but with, because I had caregivers, I had people taking care of me, you know? So I was like, oh, well, I'm going to see how good a patient I am, you know?

But yeah, I try to do that because the healing process is not real comfortable for me because I want everything to be perfect. I want to be perfect. I want to control everything.

I want to feel great. I don't, you know, oh, what's this? You know, and there's like little side things that happen.

So it's been a fascinating journey.

You did say you're out of control. You are not in control.

Yeah, no, you're not in control. Oh, I got that message loud and clear.

But that's with caregiving, you're not in control either.

Right, yeah, right, right. But I think the degree to, because I never had anything wrong with me really prior to this. And I think that this really taught me even a greater lesson about control, that we don't, we control very little.

You know, my survival as a person depended on me having control. I mean, that's how I function, that's how I go through life. If I can control everything perfectly, you know, then I'm going to be okay.

And to a certain extent, you know, that was a house of cards that held up for me for decades. And I think caregiving, you know, knocked kind of the top cards off, you know.

And then I think having brain surgery, sort of like the whole house fell down, and it was like, you know, oh, it's left, you know, like I really can't control this. How do I function? You know, I'm just learning to be vulnerable and day at a time.

But you still are holding the deck of cards.

I'm still, I will, they'll probably bury me with a deck of cards.

I buried my dad with his filly's hat, because we were from, and my mom's sunglasses, she always had these sunglasses on. So yeah, so they'll put a deck of cards in my, when they cremate me, they'll put a couple of decks of cards in.

Where do you want to go from here? I mean, in the podcast, where do you want to go from here?

Well, I just love our conversation about the mental health of caregivers and how we just beat ourselves up, the judge and jury and the no shame. And I mean, that's what this is all about.

I mean, is trying to be perfect, trying to keep control when we really don't have any, asking for help. I mean, I have such a hard time. I mean, to this day.

You know, and I wrote a book in the day recently that said, you know, caregivers get so much fulfillment, no matter what the situation is, I believe, that we get such a fulfillment out of helping somebody, right?

I mean, so we know that good feeling, right? That to help somebody. So why would we not give that to somebody else?

Well, it's like, why do we have such a hard time asking for help? It's crazy.

But it is most of us.

Most of us, you know? So, you know, that's the other thing.

And I, you know, and I, me too, I mean, I had a pivotal moment where I woke up at my parents' apartment, like at 5, 4, 4.30, 5 o'clock in the morning, a Sunday morning, just in a complete panic attack.

I mean, I was physically and emotionally just shaken, like I was shaking physically. I was just, you know, it was like total doom and gloom. I was going to die.

They were going to die. It was just awful.

And thank God, something inside of me made me reach for the phone, and I called a fellow caregiver, who completely talked me down off the ledge, really helped me, really listened, and whatever, you know, and I, but I was in such a state that I didn't

even think twice about, like that's how desperate I was, you know, I had to ask for help. That's how bad it was. So you can imagine how bad it was. And I hung the phone up and I thought, I don't feel shame around that.

Like she didn't make me feel ashamed, right? So, and actually I feel really good. I feel really heard and I'm not alone.

And I thought, well, you know, the sky didn't fall on me, you know? And I thought, oh, well, okay, I guess maybe this asking for help. So that kind of sent me on a journey to start sort of asking for help in like little tiny ways.

Like, you know, I didn't do it really well for quite a while, but like little bit by little bit by little bit. And by the time my parents passed, I had a team. They were taking them to doctors, appointments.

I had friends of my mom and dad who were nurses. They were administered during that. I mean, you know, it was just for some reason I couldn't be for some reason we had, I guess my dad had some kind of spell or some kind of emergency.

I don't know, something happened. And they sent a nurse, I guess maybe after his open heart surgery, he had an open heart surgery at 87 to take care of my mom. Like he did great for like two more years.

But for some reason, they sent visiting nurses or whatever, and she called me because they have to call me, because for some reason I couldn't be there. And I could tell she was high.

I could tell the nurse was high, whether she was drunk or whatever. And she was screwing up my dad's pills and calling the doctor. And so I thank God I had asked for help.

And their next door neighbor who they were really good friends with was a nurse, like a retired nurse, but a nurse. So I called her and said, please get over there and throw that lady out of the house, because my dad's too nice to do. So boom.

I mean, stuff like that.

How fortunate that you recognized that when you were speaking on the phone with her and had the nurse next door to send over there.

Well, that's where the miracle happened.

You killed your dad.

Oh, of course. Of course. Of course.

Of course.

I hope there was a follow up. Yeah.

Yeah. And, you know, I don't talk about this often, but I'm clean and sober 38 years. So I understand that that can be a hard journey.

So I wanted to be as empathetic as possible. However, it was dangerous. Yeah.

Very dangerous.

Yeah.

And hopefully, that was a bottom. And people got help, you know. But yeah, that was and I mean, it was just, you know, top of my head exploded that day.

I bet.

Well, you know, you say that we all have skills. We all have abilities. You have a history that helped you know exactly what you were listening to on the phone.

Yeah. You know, perhaps not everybody would have known. Right.

Yes, exactly.

I explored speech and, you know, yeah.

Yeah.

And just, yeah. You know, and that's why I always say, you know, expect the miracles because they happen. I mean, it's just, you know, things line up in miraculous ways.

I mean, I don't, you know, I there were times where I just I was my back was against the wall and things would just happen or fall into place or somebody would call me or whatever.

I mean, just maybe really believe in something in a higher power or whatever you want to believe in.

I believe that too. Yeah, definitely.

You know, I think caregivers are blessed.

They're empowered.

They're empowered.

Yes. And if they can seek supports through what we can offer. Yes.

That really helps empower them.

But yeah, there's nothing like another caregiver. Yeah.

Oh, I say the best resource for caregivers is another caregiver.

Yeah. Yeah. Yeah.

I mean, look, I had therapist. I've belonged to a caregiver group. I connected with other caregivers.

I would talk to people and I would... I mean, I'm a schmoozer anyway. I'm a big talker, but I would talk to people in the grocery line.

Yes.

Right?

Because you could.

Because I could.

And eight times out of ten, there was, oh, I'm taking care of my mom. Like, oh, I'm taking care of my brother. You know, and it would be just that five minute of, you know, oh my God, you believe what they did today.

I mean, you know, like, boom, instant, instant relatable stuff.

And it really gets it. Oh, they get it.

They get it. But nobody lives harder than two caregivers together. Right?

It's a vent.

Oh my God.

Oh, and it's a vent. Oh yeah. And cry.

I mean, yeah. But I mean, I've gotten, like, milk through my nose, laughing with, well, you know.

I'm appreciating that visual.

I'm sorry. I'm sorry. But you know how kids, when the kids, you know.

Yes, I totally know.

I got the visual.

But I mean, you know, I've gotten, like, laughing so hard with caregivers, like about, oh yeah, well, your mom. Yeah. Well, yeah.

Well, my mom, you know. Oh my God.

My support group, the only rule we have, well, other than to be confidential, anything said there stays there, but to have fun.

That's great, because it's very hard to keep your humor sometimes, but boy, does it work.

Yeah.

And that was one of the bridges for me and my mom. There were two bridges for me and my mom. There were a lot of bridges for me and my mom, but one of them was our sense of humor.

And as you can tell, I have kind of a goofy sense of humor. And my dad is very, and they got along because their sense of humor was kind of, we sort of all have the same sense of humor in my family.

And all my life I tried to get my mom to laugh out loud, like she had a really great laugh. I see that now, you know? And I have a picture of me actually doing something, and she's laughing out loud.

That's just one of the most precious pictures to me. So it helped me because if I could loosen up and stay in touch with my sense of humor and sort of like nudge her, she would get laughing.

Like she was like, you know, don't get all, there's no future in it. I mean, you know, that's one of her famous lines, you know? So I mean, you know, oh my god, you know, so that was a bridge.

And then the other bridge was sort of, you know, we had been so abrasive with each other for so long. So now I would walk into it that way. Like I would walk in the door that way.

Because, you know, they say if it's historical, if you're historical, it's historical. So I would just bring that.

And I realized that if I would soften that, you know, especially as she got worse with her dementia, the softer I got, the softer she got. Because she just had a lot of anxiety. That was her whole thing.

She was very anxious, I think, probably undiagnosed. So there were the two bridges right there that I learned to work quite a lot.

That's that knowledge. That's that awareness, knowing. And back to the humor, if you don't mind.

It's usually the silliest thing that sparks the humor.

Oh, yeah.

Silliest thing.

Yes. You know, and I would go on YouTube. I mean, I, oh, it's Sophie Rolls Down a Hill.

Who's? Sophie, go into YouTube. And this is my sense of humor.

I'm sorry. It's a really old video, but Sophie Rolls Down a Hill. Guess what?

If you love dogs and you want to laugh, Sophie Rolls Down a Hill. But I mean, there's stuff, there's cat videos. There, you know, I mean, there's, and now on Instagram and, you know, and animals, like animals doing people things, I find really funny.

I don't know why. If you dress up a parrot, you got me. So yeah, and my animals, all the animals that I've ever had, had a sense of humor.

All my animals are goofy. And as a matter of fact, I have a rescue from Puerto Rico. And he was, I mean, he was on the streets for two years and probably in a hurricane and whatever.

And he's really standoffish. He's not affectionate at all. He's the best dog in the universe.

But I had a hard time because I was like, you know, no snuggle boggles. And I got to him through his sense of humor. I could tease him.

And that was the bridge, you know? And he's funny.

What's his name? What did you call him?

Rodrigo from Puerto Rico. Freddy to his family and friends.

Oh. Freddy once you started to laugh with him.

Yes. Yes. And to tease, like let him tease me and tease him a little bit.

And he's got a sense of humor. So I think it's sort of a universal kind of thing of joy and just not being so serious. I can get so serious about everything.

Well, and I think that's tied in with perfectionism.

Like we've said before, I think it's tied in.

Yeah, I agree.

So we need to let loose and yeah.

And I'm the poster child for perfectionism. So that's why you're saying so much.

Maybe.

It's a big theme in my life. I'm very aware of it and I still struggle with it.

But that humor thing, I'm getting sore cheek muscles from laughing with you. Like they are really.

And it's joy. It's great. And here's two things.

You're bringing a lot of things out of me. Two things would happen to me that I learned during the period.

One was if I thought something was really funny, if like, you know, I think things are funny in general, but if you really get me to the point where I can't breathe, you know, milk that, like milk it.

Like, I would like, because we stop ourselves, kind of, you know, like because you're laughing so loud, or what are people going to think, or like my sister and I, like when we get together and we find something really, I mean, people have gotten mad

at us, especially in theaters and stuff, you know what I mean? Because we are sliding down, like in our seats, because we can't stop ourselves. Don't stop it, just like let it go.

And the other thing is, if you're weeping, if you're crying and you just let it rip.

Yeah. Don't stifle the tears. Yeah.

No, stop.

I think you should laugh and weep like until your body just can't do it anymore.

Yeah. It's cathartic. Both are cathartic.

But I think you nailed it too. You said like we're worried about what other people think.

Yeah.

However, there's been the giggles come in funerals too, and yeah.

Oh my God. Oh my God. And I'm Catholic, so in church, didn't I see something on TikTok or Instagram or whatever, because I have to be on all those platforms.

Whereas something about you want to have a friend that gets you in trouble in church, like you need that person in your life that makes you uncontrollably in trouble laughing at something.

Letting it all out.

Letting it all out. And just the joy of life. I mean, I just think that's absolute joy.

And we have a big thing about laughter here in the country right now. And I just, how could you think that laughing and feeling joy is a bad thing?

And it's freeing.

Oh, my God.

And it's unifying.

And it's unifying. And you're not taking yourself so seriously. Like, you're not so important.

You know, I think sometimes we think we're so important, and we have to be so, you know.

Image.

It's all about image. It's all about people pleasing and what people think.

However, my understanding of warriors is that they have to stifle or withhold their laughter. Well, we're going to have to soften that image a little bit.

Yeah, we'll have to soften that. But I do believe that if you're a true warrior, you laugh like a warrior.

Okay.

Yeah. I mean, if you're a true warrior, you're going to have a downtime that you deserve, right? To both cry and to laugh.

True.

Because warriors aren't like perfect beings.

They suffer, they bleed, they make mistakes, they stumble because they're in the dark a lot. But they still keep going to battle.

And they laugh.

Hopefully.

But not while they're standing up for inspection. Wow. You're giving us so much today, Susanne.

This is amazing. So we've talked about your book. We've talked about your Weapons of the Day, which I love.

We've talked about your caregiving story. We've talked about your brain tumor and how you're recovering and you're recalibrating at this point. You've given us many quotes, which I love.

And I'm going to enjoy going back and pulling them out of this recording. And so how can folks reach you on social media?

Thank you for asking. The best place is through my website, because there's my e-mails on there, and I get all of them myself. And DM me.

You can DM me in Instagram. All of my social media is at Caregiver Warrior, except for X. I'm going to have to call it X now, which is Caregiver Warrior.

But everything else is at Caregiver Warrior, TikTok and Instagram and Susanne White and LinkedIn. I'm trying to think of what else.

YouTube. Are you on YouTube?

I'm not. I mean, yes, I am, but there's not a lot there yet, and I think that that's got to change, because I want to get better at that, because I'm really expanding on my speaking career now, too.

So it's like important for people to be able to see me.

Yeah. Yeah. And is there a tidbit, a fun tidbit about you that you'd be willing to share with the listeners today?

Fun tidbit.

I used to be a singer-songwriter.

Oh, okay. That's not just going to stop there. That's going to expand a little bit.

Please tell me more.

Well, one of the things that my mom did for me, which is interesting to talk about now, but she really supported my creative side. So everything else in my life, she was really hard on me.

But boy, did she give me support and freedom with my creative side. So when I was a little girl, she said, do you want to take ballet? And I said, no, I want to play guitar like Elvis Presley.

So she got me an electric guitar. So yeah, I know it's amazing. And I always say that, you know, I never, you know, it's not necessarily good content all the time, but I never have a blank page in front of me.

Like, and I believe it's because she supported me. She came to every gig. So the years went by and I did singing, songwriting, sang my way through college, came to New York.

She was at every gig, so I would let her come to like sit in the front row, you know? So that was a great gift.

And that does not parallel with what you're saying about your relationship with her.

No. And sadly, although before she passed, we had a conversation because she said, are you singing? You're still singing, right?

And I said, oh, Mommy, not that much. Well, you have to do that. And okay.

So I always knew, I didn't really understand it until the healing happened, where I was able to look back. I didn't understand a lot of things about her, and I have grief about that.

I have grief that I lost years, because I only had her for those last five years.

So it's in retrospect that I can look back and say, wow, and work I've done with myself, or in therapy and whatever, where I say, wow, the reason I am never lost for content, or my expression, I never have writers block in any way, shape, or form, is my mom. Because it was just like, oh, that's what she just completely supported me, and made me feel like I could do anything when it came to that.

Oh, wonderful. That is a huge gift.

As a woman, too. I was a record producer in the days when there were no women, and I never thought I couldn't do anything because I was a girl. And that was my mom.

Wow.

And I still think that of you, there's nothing you can't do. And that is why you are the Caregiver Warrior.

Well, thank you.

Yeah. You're delightful.

Well, thank you so much. So are you. This is just this is we could do this all day.

I said we could.

Three hours. Might need a bathroom break every now and then. But no, this has been fabulous.

Great.

Yeah.

Is there anything else you want to add?

I think if we save one caregiver at a time, I think it's really important because I call caregiving a silent epidemic because caregivers are silent.

And I think the work that you do and the things that I try to do, I think we really want to save people from hurting themselves the way I might have hurt myself, by being hard on myself. And I think it's really important.

And I think it makes a big difference. So for that, I thank you.

And I say, you're more than welcome. And I agree. The one caregiver, let's save one caregiver.

It's the starfish on the beach story. And I just wrote a blog about that. We're helping the one.

And I always say, if this helps one person, and I hope it helps a lot more than one person, but that one person who's needing help right now, I hope it helps.

Mm-hmm, me too.

So thank you so much, Susanne, for being the Caregiver Warrior and for being such a delightful guest on the Island Treasures podcast today.

Thank you so much for having me. This is an absolute joy.

For me too. Thanks. Have you ever tried to keep control when you didn't have any control?

Perhaps like Susanne, you jumped into caregiving with both feet, wanting to fix everything before quickly learning that that wasn't possible.

Susanne learned from her caregiving experience and from her brain surgery, that there are times when she had to ask for help. Asking for help isn't comfortable for most of us. So Susanne suggests we start small.

She also reminded us that shame has no place in a caregiver's world.

So when we doubt ourselves and don't measure up to our own expectations, she suggests we focus on all the things we did right throughout the day, not the one thing we didn't do well in our own opinion. And she reminds us to laugh and laugh hard.

And conversely, if we need to cry, let the tears flow. For more self-care tips, be sure to check out Susanne's book, Self-care for Caregivers. And of course, her weapon of the day to empower us daily.

After all, caregiving isn't all unicorns and roses.

If you feel like you're in the messy middle of caregiving and need some supports, I invite you to tap into alongside caregiverconsulting.ca or alongside Caregiver Consulting's Facebook page or Instagram account or caregiverwarrior.com.

Thank you for tuning in today. And to Susanne White, thank you for sharing your insights and tips along with your journey and supports as the caregiver warrior. If you enjoyed today's episode, tell your friends and other caregivers about it.

And if you don't want to miss future episodes, be sure to subscribe to the Island Treasures podcast. See you next episode.