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45 Years Of Caregiving – And The Aha Moment That Changed Everything With Debbie Weiss
I am so excited to welcome Debbie Weiss to the show. Debbie, tell us who you are and what you do.
First of all, thank you so much for having me, I’m excited to be here. My name is Debbie Weiss, I’m an Author and a Speaker, and I basically speak from my own experience of being a lifelong family caregiver, something I didn’t know I was signing up for 45 years ago. It’s been a journey and around the age of 50, I found myself overwhelmed, unhappy, burnt out, all the things and had an a-ha moment, made a decision to make a change, and now at 62, I’m living my best life.
Caregiving For Her Father, Husband, And Child
Yes, you definitely have an epic story. Let’s delve into that a little bit. You mentioned that you were inadvertently a lifetime caregiver. What were some of the roles that you were playing there? Who were you taking care of?
It started when I was 17, and my father, who was days shy of 46, had a massive stroke. Thankfully survived, but he became permanently disabled, and my parents were divorced, and from that age on, I became his primary caregiver for the next 30 years. Maybe about twenty years in, I had my oldest son, and he was diagnosed on the autism spectrum.
As parents, we’re all caregivers, but I have two kids and I can say that there is definitely a difference parenting one with special needs. That became my second caregiving role. Later on down the line, actually after I turned 50 and had my little a-ha moment, I became my husband’s caregiver and he suffered from a variety of both physical and mental illness, but out of the blue was diagnosed with terminal cancer. For the last six months of his life, I was intensely his caregiver as well.
Did you actually sleep? That’s three high-needs people who need your time.
Yes, if I was sleeping, I was probably dreaming about what I had to do the next day.
Probably. Truly an epic journey and what I might call the epic unexpected. Those things that happen that change our life that we could never have predicted. Interested in delving into each one of these. With your dad, what was the level of care that he needed? You said he was disabled but there’s obviously a large amount of being disabled. Maybe not being able to work, but able to real walk around on his own, able to feed himself, he may have made meals, but so what did that look like?
Yeah. Thankfully, eventually after a year or two, he was able to walk with a four-prong cane. He never got back the use of one of his arms. My mom actually helped us get him into a facility where it was for independent living. It wasn’t like just like you mentioned. Thankfully he didn’t need that type of assistance feeding himself. He learned through therapy how to dress himself even though it was a slow process and it took years for him to learn how to bathe himself and all the things. By living in a facility that was for independent living, he had his own apartment, but there was a dining room where he went for three meals.
Parents are all caregivers. But there is definitely a difference in parenting a child with special needs.
There was support around him, but he still had a measure of his own independence and stuff. That’s really good.
Yeah. It was. The thing was, having a stroke at such an early age, we didn’t have an abundance of money. I would say that we were maybe middle class.
Not quite on the plan of when you needed independent living care. Yeah, I get that.
Yes, exactly. He had the stroke in 1981. These facilities were very far and few between. We couldn’t find any facility where we lived. I’m originally from Long Island in New York and we could not find a facility there. He wound up being in New Jersey, which mile-wise, it’s not a big difference, but if you’ve ever been to Long Island or New York what is 60 miles could take you 3 hours.
Thankfully my aunt, his sister, and her family lived about fifteen minutes from where he was so at least it was comforting knowing that they were there. At twenty-something years old, I had to understand and learn what is Medicare? What is institutional Medicaid? What is social security? What twenty-year-old knows these things?
Right, no, absolutely. Not to ask a too personal question, but he didn’t have long-term care insurance because at 46, why would you? You don’t have any indication that anything that you’re going to need that anytime soon.
I’ll tell you, I don’t even know if long-term care was a product then. He did have private disability. It wasn’t a large amount and he had that and then he did get social security disability, but what wound up happening was as he got older and things changed, I then had to move him around to different facilities over the years. At 65, his private disability went away. That turned into quite a financial challenge.
I’m sure. You said that you had a son who’s on the spectrum. As a mental health provider, I’m familiar with that. Again, being a spectrum there are different ways to classify. Sometimes we say that someone is high on the spectrum meaning, at least the way I’ve heard it, they’re very functional. There may be some social interactions, but in general, able to take care of themselves, hold a job and stuff. As you go “down” the spectrum, the amount of care is greater because the ability to understand, take care of themselves, avoid danger, etc. For your son, if you don’t mind my asking, where was he falling within that spectrum?
When he was first diagnosed, he hadn’t really spoken yet so we didn’t know what was going to happen. Time-wise, we forget what it was like. When he was two, literally, the developmental pediatrician handed me a brochure. That was it. Good luck to you. My mindset was I have to make my son be “typical” by the time he’s in kindergarten.
I reached out to every therapy. I started spending money we did not have, I remortgaged our house, I had this just feeling that if I didn’t do anything and everything that could possibly help, I would always regret it. I remember used to say to my husband, “If we sell our house and we have to live in a 1-bedroom apartment all 4 of us,” because I have a younger son, “then it would be worth it to have done whatever we could to help Sam.”
That’s pretty much what we did. Back then I had a $6,000 a month bill for his therapy. I brought in therapists were in the house 30 hours a week. It was intense. As a parent who has no familiarity with any of this, you’re constantly learning, you’re constantly stressed, you’re dealing with the school district, they want to do one thing, but you’re learning that hey that might not work for my son.
I would say he is absolutely on the high end of the high functioning. As a matter of fact, he added an ADHD diagnosis when he was 5, depression and anxiety when he was 9. They actually took away the ASD diagnosis. Whether he is, whether he’s not, it doesn’t make a difference because as he got older, his mental illness definitely became much more prevalent and more of a factor than anything associated with autism. At twenty, he wound up being involuntarily committed into a mental hospital. That was probably the worst time of my life, and I’ve been through a lot.
I can imagine, Debbie. For the trifecta of care, then you had your husband, who as you mentioned in the intro, had some physical and mental challenges and then he got terminal cancer.
I think honestly, my son’s hospitalization was the nail in the coffin, so to speak, for my husband’s mental health. It shook us both, like I said. It was an awful thing and it was during COVID so we were not allowed to see him and just a lot of stuff happened. Anyhow, yeah, so my husband also suffered with depression and anxiety, ADHD as well. Something that I really didn’t realize until I started to see it in my son and then I was able to piece together the similarities.
Funny that all of a sudden, you become familiar with what the symptoms are and go, “Okay.”
Apple doesn’t fall far from the tree, let me tell you.
Normally with stuff like that it really doesn’t.
I was going to say, actually since we’re just talking about the mental health piece of it, when the six months that my husband from the time he was diagnosed until he passed away, the cancer was the “easy” part. He slipped into, understandably by the way, who wouldn’t, an incredible period of depression and anxiety that eventually led to him being involuntarily committed. With cancer, with the whole thing, so to say the cancer was the easy part seems ridiculous, but it was.
Experiencing A Aha Moment At 50 Years Old
Debbie, here you are. You have you’ve written books, I see them over your shoulder. Congratulations on that. I too have written books and know what an arduous process that is. I don’t know about you but I know the writing was challenging but I have to say the editing part was perhaps more challenging.
Here’s a question I ask for the authors I have on. When your book actually came out, how long was it before you actually wanted to look at your own book again? At least for me, when I did the editing process, I had read my book at least six times all the way through. As with any book, if you read it six times back to back, you’re like, “I know everything that’s in this book but I’m not sure I actually want to go into chapter two again.”
Exactly. I couldn’t agree more about the editing process. With the first one, which is my memoir, I was just so excited to finish, and it was like, “I’m done,” because I didn’t know any better because I had never done this before, I never wanted to do this before. As you said, the editing process comes along. I don’t know about you, but right before it came out, I decided to record it as an audiobook and I did it myself. Now it’s done. There was no changing it. When you sit down and you read for an extended period of time, you start to notice things that you don’t like. I’m thinking to myself, “How many times am I going to say that same phrase? I can’t believe this, I can’t put this out there.”
Once your book is done, there is no changing it. But when you sit down and read it for an extended period of time, you will still notice things you do not like.
There has to be a good enough. What I discovered was at some point you want it to be as good as it can be but there comes a point where you just have to say, “Here is what I have.” Inevitably, even though there was myself and I had proofreaders and stuff, there’s always a comma fault, a period missed, a word that we all missed. Five people going through it 6, 7 times and we all missed because we all know what it’s supposed to say.
You just forget like you’re writing, “I am,” whatever but you’ve got the am and so it just goes, “I so happy,” and then you’re like, “How did we all miss that?” On the mental health side, I go, “I get it.” You know what it’s supposed to say. In your mind you fill in the word because you know. You wrote it, you’ve read it so many times. Yeah, absolutely. Your first book, I believe, is On Second Thought…Maybe I Can. Is that your memoir?
That’s my memoir and it is about 30-plus stories of different stories that happened in my life, just taking you through my childhood and how I developed a lot of my limiting beliefs and then the middle section where a lot of this stuff that we’re talking about happened, and then my a-ha moment at 50 and what I’ve done in the decade since.
I love a-ha moments because it’s like all of a sudden, this weight is lifted off of you. Where were you when you had that a-ha moment?
I call it an a-ha moment. It’s not like in the movies or in a cartoon where all of a sudden, the character bubble pops into his head and eyes open wide. It was a slow a-ha that happened when I turned 50 because for me, something about the number 50 really hit me hard. One, I couldn’t believe I was 50. How did 50 years just fly by? Thinking, “Okay, the next 50 are going to go even faster.”
I watched my dad had passed away about a year before and I know that he died with so many regrets and my mom, who’s still alive, also shared a lot of regrets. I thought, “I don’t want to be that person at the end of their lives looking back thinking, ‘Why didn’t I?’” Shoulda, coulda, woulda thing. Here was the issue, I didn’t have any particular dream, anything like, “I always wanted to be an artist or an author.” No I had nothing. I didn’t know what it was that I was looking for.
That was the first part. The second part was that my friends took me away. They insisted because I have very good friends on taking me away for the weekend to celebrate. One night at dinner, we were chatting and my friend said, “Let’s go around the table and talk about our hopes and dreams.” When they got to me, I didn’t have any. I had dreams for my kids but not for myself.
When I got back, I said, “Something’s got to change. I don’t know what it is. I don’t know where to start since I have no idea where I’m headed.” At that point, I knew that the one glaring thing in my life that was out of control was my health because I’ve always struggled with my weight from the second I was born. At that point, I think because of how burnt out, exhausted, resentful, all the things I found myself after so many decades of caregiving, I was more than 100 pounds overweight.
It does happen to caregivers because all of your energy goes to someone else and you rarely think of yourself.
Exactly. When you’re younger, and not that it still doesn’t apply, but when you’re younger, you’re really looking at it from a vanity perspective. “I want to wear these clothes. I want to look good.” At 50, with kids, now you start to say to yourself, “I want to be around. This is affecting my health.” What wound up happening was I’d lost probably thousands of pounds lost thousands of pounds.
I knew how to do it but clearly, it wasn’t working for the long term so I had to go about it a little differently. What I wound up doing was I went back to Weight Watchers because for me, that had been I’ve been the most successful and I thought to myself, “Something’s got to change.” Usually, I would approach it as, “I have to at least lose 25 pounds in 3 months or by the summer or by my birthday. Otherwise, I’m a failure.”
This time I said, “I’m not putting that pressure on myself.” The only thing I’m going to do, my only goal when I started was to just show up every single week at a meeting. I didn’t care about what I ate, drinking the water, exercise, none of it. That was it. Every week when I showed up, I was proud of myself because I did what I had set out to accomplish. I probably gained 5 pounds in 3 months but I still showed up.
Once I had that down then I added another little piece and another little piece. During that time, I had a mindset shift because I realized this is not on again, off again. This is forever. That realization really changed things for me. It took about three and a half years, which in the past, if it had taken that long, I would have definitely given up.
It took about three and a half years to lose 90 pounds. I have not yet hit the 100-pound mark, which was about 10 years ago. However, I have maintained that weight loss. That’s the first time that I’ve ever done that. I then took that concept of breaking things down in in bite-sized pieces, changing my mindset, seeing how I’m looking at something and then I started applying that to different areas of my life.
Absolutely. It’s so funny because you just mentioned two things that I talk about in my book. First of all, those two very important words, not yet. It’s so powerful. It should absolutely be all of our companions on whatever journey we’re on. Why? It’s because not yet leaves the door open that you’re working on it. I’ll jump back. Weight loss, definitely. Not yet has to be your companion.
Here is my goal and not forgetting the fact that you probably, along that journey to lose that weight, had a heck of a lot more successes than failures. Yet human nature whatever is we focus on what we didn’t achieve and completely ignore all the good things that we did right? In losing weight, you’re like, “I had that cookie,” even though you might have exercised, drunk your water, and otherwise done everything that you needed to do. Yet you just focus on what you didn’t do.
I talk about it all the time. I’m sure the people read the show are like, “Here he goes about not yet and the 97-3 rule,” but it’s really true. There’s so much more good in our day on average than there is that’s not good. Yet we want to focus on that little 3% that didn’t go right. Debbie, you and I woke up this morning. Not that we doubted we would but that’s a really good start. Here we are.
You said, and I love this because I talk about it all the time with our epic goals, put it into bite-sized pieces. I call it my pizza analogy which is unless you have a teenage boy in the house, we eat pizza one slice at a time. Now if there’s a teenage boy, as you know, you had two of them, any food that’s there, if you want it, it is like the Serengeti. You better eat it quickly because it will be gone.
You’re not enjoying that slice of pizza. You’re trying to get in before they just decimate it. Yet you’re right. The only way we can do things is step by step, no matter what your journey. For your weight loss journey, you got to take it one pound at a time. You can think about the bigger goals, but really, you got to focus on what you’re doing now that gets you one step closer to your goal. I think that’s great. Writing our books. I guarantee you didn’t sit down and just knock the whole thing out in one day.
Definitely not. I had good days and bad days with that too, right?
Absolutely. There the days where you really want to get something down and then writer’s block. You’re just like, “I don’t know. I can’t write this thing.” Mindset is so important on whatever we do and weight is something that lots of Americans struggle with. It is a mindset change of, as you said, “This is a lifestyle now. Here is how I need to do it.”
It was also a mindset shift in I had that victim mentality. “Why me? Why did this happen to me? Look at her. Look at what she’s eating. She’s able to eat that.” This is what I was thinking to myself. “She doesn’t have a weight problem,” except I was not thinking, “I’m seeing that woman eat the ice cream now. Does that mean that she’s eating that every day, all day long? No, I don’t know what other habits that she has.”
I was so in my own head feeling sorry for myself that this has been my journey with this instead of realizing just take responsibility. It is what it is. Don’t compare yourself to other people. You don’t know. We don’t know. We think we always know, especially now with social media, what’s going on in everyone’s lives. We don’t know.
I have said on the show before that we look at our neighbor’s yard and see the grass is so green and we’re envious of their beautiful lawn, yet we don’t know what’s fertilizing their lawn. I guarantee that same neighbor looks out and may say, “I really need to go clean up all the dog poop in my yard.” It’s the same with that woman who’s eating the ice cream. You have no idea. Maybe she’s mad at herself for having the ice cream, maybe she’s excited because she’s rewarding herself, she’s achieved some goal.
Also, along the way, you need to have milestones along the way. When I have lost 25 pounds, I get to go buy some new clothes or something. I find on any of my epic journeys, that makes it more manageable. I have the bigger goal but I know along the way, I want to get here because then I will get to go do this.
I’ve done that. I did that with my weight loss. Every five pounds. I didn’t reward myself with food necessarily, but whatever.
Get In Touch With Debbie
No. There may be something that when you were at your heaviest you couldn’t do. I’ll just arbitrarily pick something. Maybe there was an amusement park ride that you were just too big to ride on. You’re like, “When I have lost fifteen pounds, I will be able to ride this ride that I’ve wanted to ride but couldn’t otherwise do.” All of that is great. Your journeys, because there’s not just one, are really so incredibly epic. How can people get a hold of you, Debbie?
I think the best place is to go to my website, which is DebbieRWeiss.com. From there, all my information, all the social media, all the things are there.
When you bring together little sprinkles, you can make life more fulfilling and colorful.
From your other book, The Sprinkle Effect. Can you just quickly share 1 or 2 things that people should know about The Sprinkle Effect?
I think The Sprinkle Effect came out of just what we’re talking about. It’s about how little sprinkles, sprinkling in little things into your life when you bring them together, can make your life more fulfilling and colorful.
Debbie, I’m going to thank you so much for being on with me, truly an epic conversation. What a journey.
Thank you for having me.
Of course. I want to remind everyone that if you’re ready to begin your epic journey, go to EpicBegins.com. As always, remember, epic choices lead to the epic life that you want.
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About Debbie Weiss
Debbie Weiss is a best-selling author and professional speaker known for her candid conversations about midlife change, caregiving, loss, and what it truly takes to rebuild a life after years of putting others first.
For decades, she lived with a victim mentality, believing that her struggles with weight, years of family caregiving, infertility, and later widowhood were reasons life could never become what she hoped for. Turning 50 marked a pivotal shift, as she realized that waiting for circumstances to change was what kept her stuck. While that shift did not remove her challenges, it transformed how she chose to show up for her life.
That transformation became the foundation for her inspirational memoir, On Second Thought… Maybe I Can!, which she later shared on The Kelly Clarkson Show. She is also the author of The Sprinkle Effect, a practical guide that encourages forward movement through small, intentional changes rather than overwhelming reinvention.
Today, Debbie speaks on stages and podcasts about responsibility, resilience, identity, and starting over later than expected. She is known for her honest, relatable style that blends insight, warmth, and lived experience. Her goal is to leave audiences feeling seen, less alone, and empowered to take a meaningful next step.