Episode 4: Turning it Around -- How Caregiver Debbie Weiss learned to care for herself

Unknown Speaker  0:25  
Hello, and welcome to the Storied Human. Each week I will tell you a story. Or I will talk to someone who has their own compelling story to tell. I'm a writer who loves to write. But even more I love to hear stories. Did you know that humans have been telling each other stories since before they wrote, it is one of our most basic forms of communication. And we still love stories that are really old. There's just something wonderful for humans in stories. I hope to explore the treasures inside of our stories. Hopefully, we will all connect and feel close. learn together, and just maybe start to remember who we really are. So tell me, what's your story. I'd love to hear it. Hi, this is Lynne Thompson with the storied human. Today I'm really honored to have my guest, Debbie Weiss. She happens to be my insurance agent, which I didn't know when I contacted her about this interview, but it's so fun. And she also is she's been running the caregiver support squad. She provides support for caregivers because she herself is a lifelong caregiver who's who finally did learn how to take care of herself, and wants to share that with others. And I think it's a wonderful mission. I can't think of anything better. And I would love for people to learn from her. She has a lot, lot to share. So welcome, Debbie.

Unknown Speaker  1:43  
Thank you so much for having me. I'm so excited for our conversation.

Unknown Speaker  1:47  
It's just wonderful. It's it's so funny that we weren't connected. And I didn't know it, we have a friend in common who recommended you. It's just lovely to meet you. I think your story is really powerful. I wanted to start maybe farther back than you thought. Just hear a little bit about how you were raised, like how your parents were or what it was like How many siblings you had, I'd like to get a feel for where somebody comes from.

Unknown Speaker  2:10  
Sure, absolutely. So I'm originally from Long Island, I have one brother, he's four years younger. And as a child, I was timid, very insecure. I was the kind of kid who, even as I was like a teenager, I wouldn't go up to a counter and order something. My brother who was four years younger, I'd be like Michael go in there and get me a soda. So definitely lacked a lot of self confidence. My parents. I mean, you know, I don't recall anything. We were a regular middle class family. My however, when I was 12, my parents were separated. And that was a very traumatic for me. I was always daddy's little girl kind of grew up feeling like, It's dad and I and my mother and my brother. Certainly that wasn't intentional. But it definitely was that way. And then after about a year or two that they were separated off and on, off and on. They did come back together. Oh, nice.

Unknown Speaker  3:25  
But I'm struck by that idea that when we're 12, especially back then there weren't as many divorces because we're just a little bit older. Yep. I think that you don't even think that's possible. You know. And when they tell you that it's just as a little child, it's so shocking.

Unknown Speaker  3:39  
Oh, I was so devastated. I can remember everything about it. I can remember being told I can remember helping my father pack. And I was then a vicious teenager to my mother. I gosh.

Unknown Speaker  3:58  
There's a connection there. And I also think like, you think back that's one of the first times you learn that things can come out of the blue and squash your life. You know, like just like destroy your peace. And it's you don't know how to handle it when you're young, but I'm so happy to hear they got back

Unknown Speaker  4:13  
together. Well, not forever. Oh,

Unknown Speaker  4:16  
I was gonna say the story continues. You never know what somebody has in their story.

Unknown Speaker  4:23  
That's right. So they stayed together. I can. I can of course only go by how old I was. Right. So I think I was probably you know, let's say 13 or 14 when they got back together. And then I really don't recall and my mom's still alive and I really should speak to her about this after they got back together. You know, I was a teenager I don't recall there were no arguments. There were no you know, it was insignificant kind of everything seemed to just be moving along fine. And then the day after I graduated from high school, my father had a massive stroke he was just turned 46 years old. And that changed the trajectory trajectory of all of our lives.

Unknown Speaker  5:08  
Now, were they still together when he had the stroke? So they were

Unknown Speaker  5:11  
together, when they had when he had the stroke. My mother was six years younger. So she was only 39 years old. And I mean, we can talk about the specifics, but my mother decided to have get a divorce. I think that she just, you know, which I didn't understand at the time. But I think she wasn't willing to give up her life for him. And and let me just say that they were separated early on, because he was unfaithful. Okay, so

Unknown Speaker  5:54  
there was a big reason. Yeah. So I think the whole thing is just tinged with sadness. Yeah. What I worry about is I think she passed the torch to you.

Unknown Speaker  6:02  
Right, exactly. I mean, obviously, that wasn't her intent. I don't. Again, I can't answer for her. But that's exactly what happened. Because after the first couple of months after the stroke, when it became apparent that he wasn't going back to his former self. I did at that time, become his main caregiver. And I had gone away to college, which was extremely difficult to leave. In that situation where, you know, my mother hadn't said she wanted to get a divorce. But I could tell that she wasn't as caring maybe as I thought she should be. And since I was daddy's little girl, and I felt this sense of responsibility. I wanted to be the one there for him. I went away to school, but I could never get acclimated. Because this was always on my mind. And he had some experimental surgery done to try and reconnect the part of the brain that had been affected. And my mom wouldn't let me come home from school. And that was super tough. And again, I understand what she was doing, then I didn't, but now I do. You know, she didn't want my life to be affected because of this. You know, she wanted me to have that college experience. But I just couldn't handle it. So

Unknown Speaker  7:32  
thing. Yeah, no, we did it for moms. Yeah. But Oh.

Unknown Speaker  7:36  
And then I came home, she did let me come home after the surgery. And I'll never forget, again, you know, how you just picture these things that I don't watch scary movies. But he was in Columbia Presbyterian in New York, in their neurological division, or whatever. And it was like this big old building with these dark hallways with these really high ceilings. And I turned the corner and there's my father sitting in a wheelchair at the end with his head wrapped in bandages. I mean, my heart crumbled into a million pieces. And that day, he said to me, I want you to come home.

Unknown Speaker  8:19  
Hmm. Wow. And that's why you did it.

Unknown Speaker  8:23  
Well, I, again, I wasn't enjoying myself because I wasn't letting myself enjoy myself at school. And my mother, and again, I totally get this. Because I'm feel the same way now with my own kids. But my aunt, my father's sister who am extremely close to how to basically convince my mother, she's it's not working, you know, she's not going to be successful there. Let her come home. It wasn't like I was dropping out of college. I was just going to make a change, live at home and commute to a university that was close to me. And that's what I did.

Unknown Speaker  9:02  
Wow. So you were able to be in college and not have that awful overwhelming thing hanging over your head. You were able to be in college during the day and then then then be with your dad.

Unknown Speaker  9:14  
Yeah. And and during that time, that was pretty much where my mom started to check out. So I was really, even though we were all living together in the same house. I was, you know, my father needed to have his limbs move to a certain number of times a day and I helped him take a shower, but I had to get a bathing suit on him. So I didn't see without any clothes on. And it was a you know, it was a whole thing. So I was commuting to a university. I was working part time and I was taking care of my dad. And after about a year when I saw the experience that my friends were having away at school, I did start to think to myself You know, I'm missing out. And even though I want to be there for my dad, I was starting to get a little resentful.

Unknown Speaker  10:11  
sounds normal to me. Yeah, we're young. Yeah.

Unknown Speaker  10:15  
And in the end, I did transfer to yet a third school. As a junior, and I a different school than I originally had gone to, and I did go away to school for the remaining two years. That's bad. Yeah. And then some

Unknown Speaker  10:36  
of that college experience took care of him while you were at that school.

Unknown Speaker  10:41  
Well, so I had a boyfriend as a senior in high school, and we were very, very close. And he also he actually left college kind of when I did, and he was great with my dad. And so my mom made a deal with him. And he actually moved into my house while I was away at college, for free room and board, and he was my father's caregiver.

Unknown Speaker  11:09  
That's a lovely solution. That's wonderful. Yeah.

Unknown Speaker  11:13  
It was awfully odd to be away at school and your boyfriend's like doing things with your family to get

Unknown Speaker  11:19  
care of your dad and your home? Yes. But it worked. It did work. It didn't move back home after college.

Unknown Speaker  11:27  
So then after college. At that point, then I guess when I was a senior, you know, I knew that they were getting divorced. And my mom had been looking for a place where my dad could live. So again, remember, he was only you know, now he's 40, whatever, 50, let's say. And he didn't need a nursing home environment, he had regained the ability to walk with a four prong cane. And he only had the use of one arm. So back then, all of these independent living facilities that were around nowadays, they didn't exist, that there wasn't

Unknown Speaker  12:09  
an alternative, not really.

Unknown Speaker  12:10  
So where we were, which was surprising, there was nothing. So she found a place. Again, I was in Long Island, she found a place in New Jersey, where my aunt, her sister, his sister lived. And so that's where he went. And I did come home. But even though we weren't living together, people often think of caregivers only as people who are living with their carry. However, that's not the case. Because I once heard a definition, if you are the person worried all the time about that individual. You're the caregiver. And, you know, I was his person, I had to be there for everything. I had to make sure his bills were paid. And, you know, he had enough snacking food in his apartment and doctor's appointments and, you know, visiting and taking the holidays, and it's a lot. It's yeah, and I was in my young, you know,

Unknown Speaker  13:18  
early, still young. Yeah, that's a lot on a person. Yeah.

Unknown Speaker  13:22  
So you continued, did you work nearby, or I didn't work where he was, I worked where I you know, where I was from. And I would just, every few weeks, take the trip to see him on the weekends. And probably have, well, this, this can get this is so crazy that I could really go into the weeds with this. So I'm going to try not to make it too too much. But so he finds again, he's still young, he finds this wacky woman who lives there who thinks that he has money but he doesn't have money. And so she convinces him to get married. Even though I said you can't get married, you can't leave this place. If you lose your spot here. We'll never get you back in she convinces him and he had a very small amount of money from when my mother sold the house you know, our my childhood home that he got and he moved out of the facility. And in with this woman, again still far from me some you know close to where he had been. She This was when the the QVC and the home shopping that work was like a new thing. She they got married. She charged she was a hoarder she bought every day she's ordering stuff on his credit cards. and any money that he had was gone. And then she was psychologically abusing him. And he would call me crying. And she was crazy. And we were afraid. So long story short, I actually had a kidnap him. I had to make this whole plan. When she was out visiting, you know, far away when we knew she wasn't going to be back, I found a facility that had now open near me. And I had a whole bunch of people helping me orchestrate this whole thing. And so somewhere in my mid 20s, I think that was he actually did then move close to me.

Unknown Speaker  15:51  
Crazy story. What were easy.

Unknown Speaker  15:53  
I mean, I had to get them divorced. I had to hire an attorney. I mean, for goodness sake. I didn't even have a boyfriend. You weren't

Unknown Speaker  16:01  
even allowed to have a youth. Yep. But that makes me feel better. You got him away from her?

Unknown Speaker  16:09  
Yes, we got him away from her. And, and much like right around the corner from me, which was actually made it so much easier for me.

Unknown Speaker  16:18  
Good. Well, it sounds like your father really needed you. And you did the right by him. But I wish that woman hadn't taken all this money. That's terrible. Yeah, it was terrible. So when did you meet your husband? Like, I'm wondering, like, how did this happen?

Unknown Speaker  16:31  
So I met my husband, I had a different career. I wasn't an insurance agent, then. I was actually a CPA, and worked for a small firm and traveled to different clients, same clients every month, and my husband had nothing to do with accounting or money. He was a salesman at one of the one of my clients. And that's how we met. That's cool. Yeah. Yeah.

Unknown Speaker  17:02  
And how long have you been married?

Unknown Speaker  17:03  
I've been married in May, it will be 28 years. That's fantastic.

Unknown Speaker  17:11  
And how many kids do you have? Give two

Unknown Speaker  17:13  
to two boys?

Unknown Speaker  17:17  
Now I know you live pretty near me, how long have you been out here in Hunterdon? County.

Unknown Speaker  17:22  
So I got the opportunity in 1995 to become an insurance agent. And, but the only option was to move, you know, move out of state to this other state. It was, you know, here are nothing. And my husband and I decided, You know what? We were young. We were married a little older. He was 36. And I was 30. But let's give it a try. Right? What's the worst thing that can happen? That's great. Yep. So we moved here in 1995.

Unknown Speaker  18:04  
I would say it worked out.

Unknown Speaker  18:06  
I would say it did work

Unknown Speaker  18:08  
out. Great. We love your service. We love your thank you and your firm. So, so you you took a chance it worked out. You settled out here. But the caregiving continued. Right. Like, and not just your dad, right. You had kids who busy?

Unknown Speaker  18:22  
Yep. The caregiver continued. It's

Unknown Speaker  18:24  
your dad. Yeah. Yep. My

Unknown Speaker  18:27  
dad then, of course, I had to move my dad out here, because now he was now he was in New York, and I was in New Jersey. So we, I had to work that all out. And actually he had to move MIT several times in the remainder of his life, because he didn't have a lot of money. And when some funds were running out, when he turned 65, I had to find out. You know, it was a whole education, about Medicaid and Medicare and Social Security and all of that very, my husband

Unknown Speaker  18:56  
had to do that. For his parents. It's so complex. It's very hard. It's

Unknown Speaker  19:01  
yeah, very confusing and very hard to get straight answers or the whole answer. Yeah. So I did move him several times. Yes. So we have two sons, my oldest son is going to be 21 in a few weeks, and at 15 months, he was diagnosed with developmental disabilities, and then that turned into an autistic spectrum disorder diagnosis around two and a half. And when he was nine, well, when he was six, he added ADHD when he was nine, he had a depression and anxiety talked about killing himself. And then when he was about 18, or 19, he added bipolar two disorder. So from the minute that he was diagnosed, just developmental disabilities. I was on a mission. I was a one Men on a mission. Always, what does he need? What's the next therapy? I don't care if I'm going to mortgage my house to the moon, which I did, where I have to drive him to. And this went on for several years, several years.

Unknown Speaker  20:19  
So now you have that, which is, that's a lot. And you still have your dad. Yep. And at the same time, other business, you have your home, you have your other son. Yep. Yep.

Unknown Speaker  20:31  
Yep. So at the same time, you know, again, since he was so young, I, my, I had my sights set on kindergarten, you know, I have to get him to x place by kindergarten. So he looks quote unquote, typical. Of course, you know, somebody back then gave me the advice that I always, even to this day, think about, which is, I had to realize this is not a sprint, it's a marathon. Because, you know, I was just burning myself out. And him out,

Unknown Speaker  21:15  
you were trials. That's what we do. We try to solve it. We think if we fight hard enough as moms, we can solve it.

Unknown Speaker  21:23  
Exactly. Exactly. And yeah, and then I still had my dad at that same time, and it kind of all came to a crescendo, so to speak. When my son was he was going into fourth grade, he just started fourth grade. And he started talking about wanting to die, and to kill himself. And that was kind of the same time where my dad through a variety of things that had happened, we knew where he was on the decline and didn't know just how much longer he had to live. So it was, and then at that point, he was in a nursing home about 20 minutes from me. So I felt very, you know, torn? And you know, where do I go first? Right? Who do I take care of first? And then, you know, I do still have a business. And my customers are still, you know, sometimes I wouldn't be there because I'd be either with my son or with my father. And then you know, customers would say, I tried to call you and, you know, I get it. I have a business if I wasn't there, they didn't want to talk to anybody else. And so,

Unknown Speaker  22:30  
you know, at a pressure though, yeah. Just a really difficult life.

Unknown Speaker  22:34  
Yeah, you feel like an octopus, everybody grabbing

Unknown Speaker  22:37  
everybody. And there's no time for you. This is what sort of, when did it occur to you that you weren't taking care of yourself?

Unknown Speaker  22:47  
I would say that it started to occur to me when I turned 50. And at that point, my dad had passed away about a year and a half before. And my girlfriend's convinced me to go away for my birthday with them on a girls trip just for two nights, because I couldn't even handle the fact that I was going to leave the rest of them without me. And it was truly transformative. Because it was honestly at 50 years old, the first time in my adult life, that I thought I don't have to think about anybody else. You mean, you want to know what I want to do for dinner? Or what activity I want to do? Like, it was amazing. And I think that was the moment where I realized, you know, when that five oh, number was, you know, I don't want to say scary because it wasn't scary, but just a

Unknown Speaker  23:49  
big one. It makes us think yeah, I was just gonna

Unknown Speaker  23:51  
say it kind of just, it's like hit pause for a minute and say, Okay, now what, because I'm already 50 And I want to do whatever I can to enjoy the rest of my life and I wasn't enjoying my life. I was always I was a victim, you know, and either looking back did I enjoy being the victim like I I've decided I don't need to psychologically, you know, analyze myself.

Unknown Speaker  24:20  
You weren't. You were a dedicated daughter and I'm a dedicated mom and I think we don't know sometimes how to how to temper that how to turn that down right in to me that feels normal. You're just a very dutiful person. You know, you were a dutiful daughter and a dutiful mom and nothing gets you nothing stopped you kind of but that didn't serve you very well. I'm so glad your friends dragged you away because sometimes those moments I mean, I feel like we all owe them because you now offer this wonderful caregiver squad, you know, care support squad, and I feel like it all came out of that. You know, it started there

Unknown Speaker  24:58  
definitely is It definitely started there. I mean, I came back from that trip. And I, I honestly did not just say to myself, Oh, okay, so what I really need is to take care of myself. Mm hmm. I think it was subconsciously. And, you know, my weight has always been an issue. So that's kind of where I started. And then, you know, I realized, with my weight, it can't be an all or nothing thinking. And that can really be applied to any habit, right? You know, I, to me, it was if I'm not perfect. I'm a failure.

Unknown Speaker  25:36  
That's so many women. I know. In fact, the Podcast, the podcast class I took was more about mindset and how you approach things. And I remember, this hit me so hard, she said, messy and Done is better than perfect. But we're not raised that way. And especially like, I feel like you and I, I mean, you're, I think you're way ahead of me, but I think we're both very conscientious daughters, right? We're the cont, it's, in fact, for me, it's like a codependence kind of thing that I had to grow out of. But, yeah, the perfect thing that'll get you, right,

Unknown Speaker  26:10  
it really does. And it got me my whole life, but the weight thing, it's like, all or nothing, I'm on, I'm off, I'm on I'm off, up and down. I'm up and down. I'm up and down. And I think, you know, and and also with that, you know, what, if it takes me five years, it takes me five years, like who what? What timeline Am I on? You know, it's always oh, I want to get in before the summer I want to lose weight before this wedding. And I realized, no, I want to do it to feel good. And I want to do it because I want to be around and, and it was all mindset and it still is all mindset and I agree 1,000%, it doesn't matter what it is. And and that's something that I really want to get across. And we'll talk in a bit about to other caregivers. It's all in your perspective, it really is if you can just shift a little bit. Yeah, it really can do and take that told you

Unknown Speaker  27:09  
what strikes me about your saying, and I could totally relate to it because and who what woman can't like I want to get then by summer, I want to get them by this wedding. But that's not self love, right? That's not loving ourselves. That's not caring for ourselves. loving ourselves is saying, you know, it may take a little while but I'm going to get healthier. And I've got the long goal in mind that's more like loving yourself and taking care of yourself and saying that you're worth, you know, a couple years, right? Really working on yourself. So you're at that point, you start with the weight and then what

Unknown Speaker  27:42  
then I think I I've always liked exercise, but I I've actually had a lot of surgeries, I have a lot of physical stuff. So that always it seemed like anytime I started to make a little progress with the movement, something else happened and I need to have this hip replaced and that hip and back and this and that. So that can kind of like wear on you. Um, so whenever I could, I was always with the movement piece. But then I really you know, I did I started listening to some podcasts all about mindset started to just on my own nothing formal, just really by tuning in. Yeah, right, that I started to make those shifts. I said to myself, Okay, I never wanted to try yoga, my pain management doctor for my back for five years. Oh, yoga and swimming, yoga and swimming. I'm like, I'm not getting in a bathing suit. So just forget that right there. That's not doesn't sound fun. And, um, I am no, I'm not one of those yoga women, you know? And finally, I had a friend who is a yoga woman. And I thought, Okay, let me try this. And it was horrible. I didn't know what the hell they were saying. I couldn't do pretty much like they people would go and downward dog and they say okay, to rest going downward dog rest. This is horrible. I can't even stay in this. But I gave myself grace. Yeah, I quickly realized, you know what? Darn it. That darn doctor was right. And this makes my backfield. Good. Isn't that great? Yep. And I realized, I don't have to do what they're doing. I don't have to measure myself against those things that everybody else can do that I can't do. I'm gonna do what feels

Unknown Speaker  29:44  
good for me. Again, it's not all or nothing. That's so great. Yep.

Unknown Speaker  29:49  
And this friend one day, she came into something, a meeting or something. And she said, Oh, yeah, I'm going to this 530 yoga class and I was like, Little bit sarcastic and thought, you know, I'm thinking 5:30pm I can't make it to a class, you know, I don't get home from work. And I said, and she doesn't work, but she's a caregiver. And I said, Oh, that works. Yeah. Oh, big. She has an adult daughter who requires full time caregiving. She works more than me. And but she knows she's a good example for self care. And I saw I said, Oh, must, you know, must be nice to be able to do that. And she said, You can do it too. It's 5:30am. I, what? And then I thought to myself, You know what? She's right. If she can do it, why the heck can I and for about a year, pre pandemic, I was taking a 5:30am class that I physically went to, but luckily, it's right around the corner from my house, three days a week, there was only three or four of us same teacher, we developed such a nice community, a wonderful relationship. And when the pandemic hit, and that ended, that was really tough, because it turned into so much more than just the Yoga, you know, lovely.

Unknown Speaker  31:30  
Yeah, that's so good that you did that for yourself.

Unknown Speaker  31:33  
Yep. So I did that. And then I've added meditation, I've added journaling, you know, being open to different trying different things, you know, I'm a scaredy cat. So, I would always be, like I said, I was timid. So I didn't want to put myself out there to embarrass myself. I feel like, yeah, it's kind of like everything else. Like, I was so embarrassed that day in yoga, and for many more days, embarrassed. But you know, what, if I hadn't done it, I wouldn't have discovered something that's really made a difference in how

Unknown Speaker  32:11  
it really works for you. But what I'm struck with is that you kept going, even though you're embarrassed, you went to the next class in the next class. So some part of you wanted to feel better some part of you wanted to keep, you know, to change up your pattern, like not be afraid not stop, just because you couldn't do what the others were doing. And that's a very powerful when we change like that, because it means some part of you really wants to feel better. Oh, mind and body, you know, actly.

Unknown Speaker  32:36  
Exactly. And you know, the funny thing is even now, so I'm hoping it's a long story, but hoping to be able, I'm scheduled to go away for two nights Wednesday and Thursday this week. It was. But it's not just it's a spa with a lot of exercise classes. Nice. And when I look at the schedule, I have to tell you, the thing that's still crossed my mind is, I can't go into that yoga class. Oh, oh, it's still there. But I go there, but I'm gonna go.

Unknown Speaker  33:08  
But it's not there. You know, I've done some yoga. And I find, well, I first of all, I found the teacher makes a huge difference, which really surprised me, I didn't understand like, huge difference, yes. But also that they're very accepting. You know, no matter where you're at, they're very kind and accepting. So it doesn't matter how far ahead, they are a view. Also, this, I have to return to this all or nothing, because that's what they call in a, they call it stinking thinking. And you don't have to have an alcoholic person in your family to have that, you know, to have that part of your makeup. Because I think it's sort of, there's a lot of theories that it's even out there in our society that we're very codependent as a society. And it's really damaging to think that way. And I grew up that way. It's all or nothing. It's like, Oh, it didn't work. That's it? I'm not going to do it. Exactly. Oh, he didn't like me the first time. That's it, we're not gonna you know, it's just this kind of, it closes doors. So I'm very struck by the fact that you learned how not to do that anymore. And I feel like I've learned that too. And I wanted to ask you, do you feel like, I have seen people who they raised their children to 18, especially, like, not so much now. But in the day back in the day, and then they kick them out of the house, or it's like all or nothing. It's like, oh, you're on your own now. And I feel like it's a transition. And I said to my son, I see it as a transition. As long as you're making progress, and you're getting towards the goal of having your own life. That's what I want to see. And I began to apply that everywhere. So I feel like you did that for yourself. You said, Well, it's a transition. I'm going to be better at yoga next year. I'm going to transition to yoga, right? And it's so much more natural and so much kinder to yourself. So when did you start the caregiver support squad?

Unknown Speaker  34:56  
So I started about four or five months ago now. Oh, cool, I think I realized, so my husband is now also disabled. So even though my dad's 10 years since he passed away, but my husband, actually, these last few months has been more of a concern. So in my head, my son is still home and not doing anything. Yeah. So the two of them are home. And I kind of through speaking to different people realized that I had something that could help I have information or a story that could help other caregivers. And I, I've never seen that, you know, people, and I don't like when people say, Oh, you're so strong? Well, I mean, I, my feeling is, anybody would do the same thing. I don't think that I'm anything. I still, I'm not saying I'm special, because I'm not. I just feel like we do what we have to do in life. You didn't ask for any of these things, but we just you do it. And I, you know, if I was gonna walk around miserable all the time, there's a I don't even know how you get out of bed. And every morning, well, what choice do I have? You know, other people are depending on me. You just have to put one foot in front of the other. And then I had this moment where I realized, well, not everybody can easily do that. Not that I easily do it every day. And I realized that, you know, I can hopefully share a few of the things that I've learned and something. Not everything. And I'm not saying Oh, so you should do yoga, and you should meditate. No, you should do what works for you find your thing. Right, exactly. But you have to realize that you're important. And as caregivers we put ourselves last, yeah. And as women and as women. Absolutely. And look, there's a time and a caregiver journey. You can't be first, right. When somebody is in crisis. You know, you're not worried about your yoga class. Oh, I get that. And that's a completely different story. But, but kind of when you're in it for the long haul like this. Yeah. You have to put yourself first because

Unknown Speaker  37:37  
to them, you owe to yourself, right? Yes, they say put that mask on you first and then on the airplane. Yeah. Because you're not going to have anything left for them. I think you are strong. Honestly, you handled. But I also think you had a lot of years to practice this. And I think that's what we're all benefiting from when we talk to you. Because you know how to do it. And you know, you know how not to do it?

Unknown Speaker  38:00  
I agree. It is a lot of years of practice. Because honestly, if you could, I'm thinking about this this morning, actually, when I was taking a shower, if I think about the person that I was, and I think that we can all say this, if you had told anybody in my life, looking at that girl at 17 as to where I am now 40 plus years later, no way they would have bet their life, there is no way that she's going to become this. But we each learn with every challenge, right? So at first, you know, yeah, all you want to do is hide under the covers, and why me but then you know, you survived something. And then the next one and the next one. And so each time that you're faced with that, you're better able to handle it because you've practiced.

Unknown Speaker  38:49  
It's wonderful. I think people need to give themselves credit, too. They don't, I think the I see a problem with just isolating yourself when you're when you're especially when you're living close to someone that you're caregiving for, or you live with them. It just becomes all about them. You know, and your world gets smaller, you're isolated. Maybe you're just not seeing your life in a realistic way, you know that you still have choices like you were saying, there's always choices and a better way to look at things. I would love to hear more about that. Like your perspective.

Unknown Speaker  39:20  
Yeah, I mean, I think something that I read recently said, This is my one and only life. And that really connects with me that I think back to that all the time. This is my life. Yes, I choose to take care of my now my husband and my son. Absolutely. However, it doesn't have to all be about that. Yes. I don't want to look back right on my life and say, I never did this. I was afraid to I never you know this is my one and only life? Yeah, that's so why don't I deserve to have part of you? Right? We all know. We all

Unknown Speaker  40:07  
love that. And you know you reminded me of that study they did. They said people on their deathbed they they don't miss things. They don't regret things they did. They they regret things they didn't do. We need to learn from that. And you're right. It's it's your life, your one and only. Also part of this whole podcast Part of my reason is I love when people have a story they can share, and we can learn from your story. But also, like, when we talk about coming into our own, you have a real coming into your own story, because you went from a timid scared curl to someone who's really reaching out to others. And I think that is very powerful. And here's why I think that I think that we all have I'm not the only one we all say, we all have unique gifts, you know, whether you're spiritual or religious or whatever, God or the universe or whatever. In in, gave you gifts, you're the only one you're it, nobody's like you. So if you like I always like to say that Christian song, hide it under a bushel. If you hide your light under a bushel, then you're not honoring who created you, you're not honoring who you were supposed to be, you know, you're saying, Well, I'm not going to share, you know, and that's not right. It's better that we could be more fully who we are. And that's like a big push for my podcast is I want us all to learn how to be more fully who we are. Because we all have something, you know, I think that you found your something like you just have this wonderful ability to share what you've learned. And to me that just touches my heart because you went through so much. And what you see is, I can share that and help others not go through maybe as much. So to me, that's golden. I just love that.

Unknown Speaker  41:56  
Well, thank you. And And honestly, since I've started and right now I have a free Facebook group, free Facebook community of caregivers,

Unknown Speaker  42:08  
and in the name again, so we get it on recording.

Unknown Speaker  42:13  
So the name of my website is the caregiver support squad.com. And on there, there's a link to the Facebook group, it has a little bit of a different name. So I don't it's a little confusing. So that's the best place. So are we start, right? That's where we start. But in the group when I post things. And somebody writes, actually, it happened today. Somebody wrote, I really needed to see that today. Or I thought I was the only one who felt this way. I honestly could cry.

Unknown Speaker  42:49  
Oh, yes. You know, there's something sacred about that. It's like a ministry. It's like God's work, because you're connecting with people that you don't even know. And you're giving them hope. And you're helping just hold them up, you're holding their hand virtually. That's such a beautiful thing. And to get feedback like that. That's wonderful. I've seen some of your posts, they're very lively, I really enjoy them.

Unknown Speaker  43:10  
Thank you. Well, I try to mix it up a little bit. You know, I, I am an upbeat person. So

Unknown Speaker  43:17  
you get to be creative. I love that part of it. So tell me some of the things that you do talk about on your group or some of the things that you share?

Unknown Speaker  43:27  
Um, well. Today, I or yesterday, I wrote, what's the one question you don't like to be asked? Because as a caregiver, you know, look, we all do this, right? You have to say, how are you? How's your mother, how's your, you know, this is what we do politely. And sometimes in your head when someone's asking that you want. And I've had this so many times, I want to say you really want to know how it

Unknown Speaker  43:53  
is. So right. You don't they don't really want to know most people don't. Yeah,

Unknown Speaker  44:00  
so the funny thing is actually, so through this whole social media thing, you know, my extended family, of course, they know the situation. But until you're in it, you don't know it. And I'm sometimes posting vulnerable videos at a point where some things happened in my house, or it's just not a good moment. And I post these videos, and all of a sudden, I'm getting texts from all these people. Are you okay, I saw your video. Like, it's a regular Tuesday. This is like reality. No, but

Unknown Speaker  44:38  
how wonderful is that? That you're sharing the bad stuff, too. Like you're sharing your real life so that everyone else who's struggling that way too. Can see oh, yeah, she goes through that too. But it's interesting that your family says oh my goodness. But I've had a little bit of that with some. It's so funny. I just said to someone I never think of myself as someone who's been ill or had a lot of illness. But I have, I just don't think of myself that way. And I think you're the same way. And I just kind of played it down, you know. And I remember, I had breast cancer three years ago, and it was not bad. They found it really early, I only needed radiation. And I almost felt like, you know, I don't need meals and not getting chemo, please don't make a big deal. But I kind of overdid it, and I didn't share enough and people were like, you have just started doing the same kind of thing. And I'm like, Well, this is just, you know, it's okay. The end of the world. It's okay. No, radiation takes two minutes. Like I just, I think radiation is such a scary word. It is. It's really nothing. I've got to tell you, it is nothing. It's nothing like chemo these people who do chemo. That's like a whole other ballgame. Absolutely. It is funny that you reveal a little more. And some of your family members or your friends are like, wow, I didn't. I didn't know. You know,

Unknown Speaker  45:50  
I started to tell them don't text me every time I post something, I'm fine. You'll know when I'm not fine.

Unknown Speaker  45:57  
You just didn't realize this is my everyday. Yeah. But that's good for them to sort of, it's just, again, when we hide stuff, right? It doesn't help anybody. Right? It doesn't help us know, and it certainly doesn't help them understand. And when we hide stuff, we separate ourselves from others. We were talking about this on another podcast, like shame and what it does to us. There's shame, like attached to so many things.

Unknown Speaker  46:23  
Well, I mean, mental illness, I was just gonna say that my husband and my husband suffer from mental illness. It is an eye you know, until them, I had no experience. It is just,

Unknown Speaker  46:41  
you see, they're awful. It's

Unknown Speaker  46:43  
awful. You should probably listen

Unknown Speaker  46:44  
this Monday I'm I'm dropping, interview with my ex sister in law. Okay. She's a retired comedian. And she's had a really interesting life. She actually ran a repo company like she went and repoed people's cars. But she's, she was diagnosed with bipolar in her late 20s. So she's now I think she's around 60. And she's lived her whole adult life with this disease. And she talks so honestly about it. And so practically, and she just tells people like, I love her analogy. She said, somebody said to her one time because she sometimes had outbursts, you know? Yes, I know. And they said, Well, you just have to stop doing that. Yeah. And she said, if I was blind, like, Would you tell me to start seeing, you just have to see. And they're like, Well, no, of course not. Because it's the same thing. And then other people just expect sort of, in this culture of seeing those advertisements, and you, you take this medicine, and you'll be better. But real life doesn't always work like that. And she talks very honestly about, do you think your diabetes is going to go away? No, my bipolar is never going to go away. I have to manage it. I have to learn how to the medicine doesn't cure me. And so I just thought that was so good. I wish we saw more of that, where people, it's just like having a physical problem. And how to get better about it. We have to get better about

Unknown Speaker  48:09  
it. But it's invisible. Because it is oh, don't see it. Right. They can usually see most other they do it says and you know, I'm hopeful that we're starting starting to lift the veil on it is a little better.

Unknown Speaker  48:25  
People are a little more comfortable. And that's nice. I have this in my family. My grandma was a schizophrenic, she was diagnosed schizophrenic. And back then they didn't really have a lot of choices. Now had, they had a drug that like zonked you out? And usually they put you if you got bad, they put you in a mental hospital. Yep, she was in a mental hospital for six years. When my mom was a child, and it just gave me this sensitivity to I would just always visit someone if they had to go to a mental hospital. It just gave me like this sensitivity to it. And my mother had compassion, like, and became a therapist in her later life, because I just, you know, I think it's just really sad. I think of my grandma. I know, she painted. She wrote, she wrote poems. And I just think that we, I think sometimes what we could have seen, you know, and what so many people could do, if they could learn to manage, you know, we could find a way to help them. So to me, it's really personal. Yeah. It really is. It's super personal. And I do suffer from mild depression. And I tried to talk about that. Yeah, I tried to normalize it. And I try to encourage people to go to therapy, unlike Little Miss therapy. I think people get tired of hearing it, but it's helped me so much.

Unknown Speaker  49:45  
And pretty much everybody can benefit, right? I know at different times in our lives or all the time. I have I have been in therapy often on different times. A lot of times I'm not because was, depending on what the situation is, it could be expensive, and everybody else needed it more than I did. So that was my choice. But um, yeah, everybody can can definitely benefit but but what you just said about your sister in law on the outbursts, you know, when my son was young, and I can't let my mother or my brother listen to this, but they don't live close. And so they weren't, you know, they didn't know my children intimately in that way other than a few times a year. And when my son would have outbursts, and they would think it was the way I was raising him, I hate that. Yep. And I have another son who's 21 months older, younger, he didn't have those outbursts. So, you know, and, and we would kind of butt heads because they would say you make everything about his diagnosis. And I would say you don't give enough credit, and understand his diagnosis, and as a caregiver. And that is something that I have talked about in the Facebook group, because there's nothing worse than not getting support from your family members. And that's one kind of support, right? But then there's that other kind of support where you have an older parent and your siblings want nothing to do with helping, right. And it's all on you. That's, you know, that's a different type of support.

Unknown Speaker  51:36  
That's a typical situation. I keep hearing about that. Yeah. So there's a lot, there's a lot for people to learn about, and get better at, because it's hard enough without the lack of support. I mean, that's just really hard. Yep. Some people don't understand, you know, they just don't. So I love that you've reached out in this way, and that you're turning maybe some of your harder times of your life into something good for others. And you seem to have gotten a great response.

Unknown Speaker  52:08  
Yeah, very excited. I mean, I have to say, I'm always like, Oh, my goodness, somebody else, somebody else joined our Facebook group. Yay. And I'd love to watch how they support each other to, you

Unknown Speaker  52:20  
know, not great. You created this community. And I love how excited you get when you talk about it. That's your sign that you're supposed to be doing it because it it lights you up, right?

Unknown Speaker  52:29  
Oh, my goodness. I mean, I actually just took a walk with a woman this morning, who's local, but didn't know she didn't know that I was such a caregiver. But she saw it online, and she's a caregiver to her husband. And she said to me, I don't understand what you're telling me like, how do you possibly have time to do this? And, you know, I, sometimes I do want to pull my hair out. But it is so fulfilling. And it does not feel like a burden or work or it just feels great. And like you said that, you know, it's I'm still on the outlook, I'm still on the caregiver self care journey. It's your never get there, right. I'm always evolving and always having things that I can improve, and it helps me as well.

Unknown Speaker  53:22  
I think it's great because I I do talk about a time in my life where I really, I was struggling with some health things. They weren't diagnosed, I was going through symptoms, and I didn't want to see people, I had Lyme disease that was really bad. And then I ended up with Hashimotos. And my thyroid and it's difficult when they don't diagnose you right away and you're struggling. So I kind of hid from people. Yep. And that's common. And even when I got better, I just, I guess I was just protecting myself, you know, and I was hiding. But this feels much nicer, like reaching out to people and hearing people like you and just, I feel the same way. It's not like work at all. I work full time. But this is my fun thing. And it's so good for me. And it's so good for what I'm trying to say is just so much better being connected to people.

Unknown Speaker  54:10  
Exactly. What may you be able to break out of that cycle?

Unknown Speaker  54:16  
I don't know. I was trying to think of that the other day. Because I mean, not to belabor the point. But I do have mild PTSD because I was mugged years ago at gunpoint, and I never really dealt with it. And I never you know how we are like I was just like, well, you know, now it's time to get past that. Yeah, it's very it right. But it came out in a psychological test that I took years later. And I was like, Oh my gosh, I didn't even know I had it. So 25% of women who are diagnosed with breast cancer end up with PTSD, because it's just kind of, you know, a shock and you weren't, you don't know how to deal with it. So that that happened to me. It happened to me and it was mild and I went about my life but I began to notice when I was sitting in the living room. And I was having these thoughts like, Yeah, but I don't want to go outside. I don't want to go there. It was just this fear. It wasn't big. But I wish more people would think about these kinds of things. Like I was able to think about it, because I've had therapy, and I was aware of it. And I, I'm not sure how I got past it, I guess, I'm trying to think of the moment when I got past it. Maybe it's just a couple of years, you know, it's been like, it's been three years. And I think that was like really important. The three years just seem to do it. Like I, I felt more like myself. But we were coming out of the pandemic a little bit. And I started to be more active, I started to enjoy work more, I got a job that I really liked. And it kind of came together. And but I'd still people, I still don't know how or why I clicked on this podcast class. I don't, I don't consciously remember how I just remember seeing something and saying to myself, that looks interesting. And clicking on it. And before I knew it, I was in this five day intensive free class, where I just fell in love with Kathy Heller, she's a really famous, very successful podcaster. And I was like, How did I end up getting her time? You know, this is great. And then I signed up for the class, which was more intensive. I don't know these things. Just they lead you along. Right? They just you take a leap. Right? You take a

Unknown Speaker  56:22  
leap? Absolutely. That's, you know, something similar happened to me to get me to the caregiver support squad. But how you said how you got out of it. I think that that's what people don't realize. With that all or nothing thinking it's such small steps with the transactions, right? Right. Maybe you went outside, or you did something one time, and you're like, Oh, okay. And again, you might not have consciously planned it, but each little teeny success. I mean, I'm actually trying to do it now back with my nutrition situation. And it's like, okay, it, this is all I'm going to commit to this little thing. And sometimes you feel like, what's that going to do? But then, I mean, that's what kind of got me where I am today. If I didn't start with one small step, and here it is eight years later. Well, those small steps really do start to add up. And once you have very teeny successes, it makes you say, oh, okay,

Unknown Speaker  57:31  
I could do this. Yeah, I can do this thing. Stone. Yeah, I think that's what I did. I also started like, being within nature more. Yeah, remembering how much I loved, I have woods behind my house, and I would go outside and with my bare feet, I would step on the earth. And I would meditate. And I would send love to Mother Earth. I do tell people that I know, it sounds weird. But I just started to feel more connected to like the spirit of the earth and the woods in a way that I always have my whole life. But this became very obvious to me, you know, and I think that's very healing. Oh, my gosh, I think Facebook healed me. And that sounds crazy, because people probably thought I was spending too much time on Facebook. But I began to connect with positive people. And I, I gravitated to them. And I began to share, like, on purpose, much more uplifting messages. And I lived in that space for a long time. And I think that's also what healed me. Because people, if I took time off, people would say, Oh, we really miss your posts. And I think all of that was leading to this where I just feel more positive. And I feel, you know, ready to really step out and, and do something different. But you're so right. It's so incremental. It's so little, and we are so bad to ourselves when we go no, you can't do this. And we were taught that as children may be like, and I think it's a nice thing. Our parents are trying to protect us, you know, from from failure or falling on our face. But that's what I was taught. It was we were told stories like, oh, remember Uncle Al, he started a business. You don't want to do that he lost his shirt. Yeah, those were stories that were told. And I know it was well, meaning they wanted to protect us. But that's not how real life works. Real life works is you fail and you pivot and you fail and you pivot and you you get along the way you get where you want to go.

Unknown Speaker  59:17  
Exactly something I heard this morning on a podcast and I am not going to probably I can't articulate it exactly. But it was basically that progress gives you pleasure. won't realize I love how much happiness you get from watching yourself progress. Oh, that's so you might be thinking, Oh, I can't do x. Or I don't want to let's just say, I don't know. I don't want to keep using food. So like, you know, with it with somebody who wants to stop a drinking habit or smoking. You know, I need that cigarette because cuz I need that pleasure in the moment. But really, in the end, you're gonna get more pleasure out of the fact that you delayed that cigarette two hours.

Unknown Speaker  1:00:10  
And that you did. Yeah, that you conquered each little. Yeah, that's so true. You know what else we weren't made. Like I said, we weren't made to hide we weren't made to, to, to be not moving, right? We weren't made to be not progressing. That's not we were made for. There's that beautiful quotation about the ship, a ship can do fine in the harbor. But that's not what ships are made for. And that was very powerful to me, because I love the ocean, and I love ships. And just the idea that you know, you're built for sailing. What are you doing in the harbor? I just love that idea. That is that idea to that progress that makes you happy? And and Kathy Heller had another saying where she said, How did she say it? She said courage. Courage gives you confidence, you don't have confidence first, you step out on courage, and then you get confident because you progress and you feel like, hey, I can do this. So we got it kind of backwards. I think the way we were raised, it's like, you have to have all your ducks in a row before you start anything. And and how often does that tell people like, oh, well, I can't do this. Because I don't have enough money to start a business or I don't have this or that or I don't have all these things in a row. But that's not necessary. I mean, I have nothing in a row. I just, yeah, I just have zoom. It's a nice people to talk to you. I'm just enjoying myself.

Unknown Speaker  1:01:30  
Exactly. That is so. So true, is you just do it. It's like Nike, I hate to say it, but it is true. It's just you're not you're not progressing, if you're always comfortable. Yes. And and I think that's a really good that that resonated with me at my day job. You know, especially because I'm self employed. So nobody's on me saying you should do this, this and this. They suggest it, but it's not really the same. I'll just go I'll do this. I'm comfortable with this. Why? Why stretch myself? This is fine. Find a word I hate. I'm known for fine every time I say this is fine. Everyone knows Oh, that can't be good. It's not fun. Well, I mean, it's just okay. And yeah. So, and I realized, yeah, you know what? I'm moving along. Yes, I go about my days, and I go about my life. And I'm doing checking the boxes, paying the bills, working all that stuff. Is that what

Unknown Speaker  1:02:36  
I want? Oh, good question.

Unknown Speaker  1:02:39  
You know, again, always thinking, because this does resonate with me looking back, am I gonna say, Huh? I basically survived. I survived through my life. I didn't arrive. I just, I made it through.

Unknown Speaker  1:02:54  
That's what that's not what any one of us once.

Unknown Speaker  1:02:58  
It's pretty brave enough to do it. Yeah. It is for you.

Unknown Speaker  1:03:03  
And sometimes the bravery is is barely there. But you got to do it anyway. And then you get brave, which is so cool. Like, it's just the movement, the action, like you said, progress. It makes you happy. I love that. I love that idea.

Unknown Speaker  1:03:15  
I do too.

Unknown Speaker  1:03:16  
So somehow we found it. We found these answers for ourselves. And we're moving forward. And I think you're helping a lot of people. So I love that. Well, thank you. And nothing makes you feel better than helping people really that's the one thing. I love talking to you. You too.

Unknown Speaker  1:03:32  
Oh my gosh, we could talk for hours.

Unknown Speaker  1:03:34  
I know we could I have to, I have to shut it off, like artificially. But thank you for sharing so much with us. And I know people will be encouraged and they'll check out caregiver support squad COMM And they'll learn they'll learn from hearing you on my podcast, but they'll also come and learn from your support group, which I think is fantastic.

Unknown Speaker  1:03:55  
Well, thank you nothing met. Like I said, Nothing makes me happier to be able to help others and maybe they don't have to, quote unquote, suffer as long as I did until I you know, so it doesn't have to be this way.

Unknown Speaker  1:04:10  
I love that. I believe that with all my heart I believe we do not have to go through something to learn. We can learn from someone else. And I think that's being I think that's being human is we connect with each other and share and tell our stories. Stories are powerful. Completely sorry. Anyway, until the end, gave us like interviews over

Unknown Speaker  1:04:34  
one more thing because again, this woman that I listened to on podcast, excellent. And and she always says, think about what story you're telling yourself. Because we tell ourselves our story, right? I can't do this because like you said, I don't have enough money. I don't know what I'm doing. How am I going to start a podcast and then you back away. You're the one telling yourself that story and you can change that So,

Unknown Speaker  1:05:00  
you are singing my song girl. That's another like whole part of this the story of human is that we, we try to talk about what stories are you telling yourself, and maybe some of them are old, they were told maybe to you by your family, and maybe they don't fit anymore. You know, and I think maybe my, my mother's story was she was a martyr. You're just a martyr and you take care of everyone. And that's, that's your identity. And she reached a point where she was like, No, I'm not, you know, and that's really powerful. And I told myself this story, like, you don't need to risk that you don't want it. You know, I was afraid for a long time. And I, I rewrote that story. So yeah, you're exactly right. I love that. And when I started this podcast, I found out there's like a whole branch of psychology, like a discipline within psychology called Narrative psychology. And therapists are using stories and the stories that people tell about themselves. So you're right on, you're like, right on. Got your finger on the pulse. It's very powerful stuff. So I thank you so much. I love talking to you your time and have a great day. You too,

Unknown Speaker  1:06:07  
Lynn. To thank you so much, you too. Bye, bye, bye bye.

Unknown Speaker  1:06:13  
like to say a special thank you to Debbie Weiss, for sharing just so much about her life and and what led her to this place where she's reaching out to caregivers and really helping them using what she's learned. And what could be better than that. So make sure you check out caregiver support squad.com And thank you for listening to the story of human and take care. And now enjoy a few more bars of my new intro and outro song written by my son Brendan Talion. I love that Brazilian feel, and I really like having his original music on my show. So enjoy

Transcribed by https://otter.ai