Maybe I Can® with Debbie Weiss

Ep. 151: Lessons From a Lifetime of Caregiving

• Debbie Weiss • Episode 151

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In this week’s episode of Maybe I Can, I’m opening my heart about a role that has shaped most of my life — caregiving.

From becoming a caregiver at 17 for my father after his stroke, to raising a son with autism, to walking alongside my husband through terminal illness… these experiences changed me in ways I could never have imagined.

I share what I’ve learned about balancing compassion with boundaries, why self-care is a necessity (not a luxury), and how asking for help doesn’t make you weak — it makes you human.

Whether you’re a caregiver right now, have been one, or may one day find yourself in that role, I hope this episode reminds you that you’re not alone, and that taking care of yourself is one of the greatest gifts you can give to others.

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SPEAKER_00:

Hello and welcome back to the Maybe I Can Podcast. I'm your host, Debbie Weiss, and thank you so much for joining me today. I know there are so many options out there, so I want you to know from my heart, I truly appreciate you joining me. Today I want to talk about something near and dear to my heart, which is caregiving. So November is National Family Caregiver Month. And last year I spent the whole month of November discussing this subject because I'm going to share with you some statistics. But let me open with a quote by Rosalind Carter, who said there are only four kinds of people in the world. Those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers. Boy, that is such an accurate quote. And I want that to sink in because I don't want you to think, oh, this doesn't apply to me. Maybe it doesn't right now, but as Rosalind said, chances are in the future it could absolutely be applicable. Let me share with you some statistics done by the National Alliance for Caregiving as well as AARP. And this is caregiving in the U.S. in 2025. Right now, there are 63 million Americans who are family caregivers. That's one in four adults. And let me clarify by saying that a family caregiver, because this was a term a decade ago that I was completely unfamiliar with, I didn't know that what I had been doing my whole life actually had a name. So family caregivers are a loved one or a friend who are taking care of their caree, someone in their life who is sick. In 2015, there were 20 million caregivers. That means in 10 years, that number has tripled. It went from 20 million to 63 million. So who are America's family caregivers? 61% of them are women. 29% are sandwich generation caregivers, meaning they're caring both for their children and adults. 18% have disability themselves, which I find so incredible. And 27% are caring for someone with dementia or a cognitive impairment. One in five can't even afford basic needs like food and housing. One in four family caregivers feel alone. Almost four in ten report emotional stress, which quite frankly, I'm surprised that's not higher. And 23% find it difficult to take care of their own health. It's a crisis. And like I said, I didn't even know this had a name. It was something that back when I became a caregiver, when I was 17, so in 1981, it wasn't even discussed. There was no support. So today I want to honor you. I want to honor all the current caregivers, the past caregivers, the future caregivers, anybody who has been or will be a caregiver. And I want to support you by reminding you that self-care is something that is imperative for all of us, but even more so as a family caregiver. And I'm going to share my caregiving story with you again. If you've been listening for a long time or following me on social media, I'm sure you've heard it, but it bears repeating to those of you who haven't. As a matter of fact, earlier today, I just finished an interview on a caregiver podcast, and the woman was unfamiliar with my books. She knew that I wrote books, and she said to me, Well, I'm sure your books came out of caregiving or the lessons you learned in caregiving. And I said to her, Actually, they're not. They're about an awareness that I had after decades of caregiving, but the books per se aren't about caregiving. And this happened kind of in a pre-conversation to the podcast. And so for a minute, I got a little anxious, like, oh gosh, maybe she doesn't want to talk about me. Maybe I don't know enough about caregiving. But then once I started telling my story, it reminded me just how much experience I have and how much wisdom I really do have to share on the matter. I became a family caregiver when I was 17 and my father had a massive stroke at 46 years old and was permanently disabled. My parents soon divorced. My father survived but was unable to work. He lived 30 years from basically almost to the day that he had the stroke. And for 30 years, I was his caregiver. He didn't live with me, but I was his person. I kept track of his finances, where he was going to live, did shopping for him, clothes shopping, food shopping, prescriptions, doctors, everything you can imagine. Just obviously visiting him on a very frequent basis, taking him to holidays and just caring for him, making sure that he had everything that he needed. And then while my dad was alive, when my oldest son was diagnosed at two with autism spectrum disorder, that started a second phase of my caregiving, something very different than dealing with my dad. Very different relationship, obviously, different reasons, and different ways that I needed to care. So in my son's case, you know, back then, which was 22, almost 23 years ago, there was no handbook on autism. That was another area that really was underserved. And when my son was diagnosed, the doctor handed me a pamphlet and said, good luck to you. And off I went. There was no internet, there was no way to do the research and find the resources that you can today. And so I just started learning all I could about autism, about the different types, about the different types of therapies, which so many of them were experimental. There was nothing, and there was and is no cure, so to speak, just things to try and improve some of the behaviors and other things that come along with it. And of course, advocating for my son when it came to getting different services, mostly with school districts, very different from being a caregiver of an ill father. And then moving on from that situation came a caregiving story with my husband that really lasted over several years, but crystallized the last six months of his life when he received a terminal cancer diagnosis coming right off a hospitalization for depression and anxiety. And not only was he dealing with the terminal cancer, but then it caused the depression and anxiety to really go through the roof, which is understandable, but required different caregiving yet again, and caregiving to a different relation. Is that the right way to say it? Relationship, I guess, right? I mean, this is your partner. So now, and even as a mom and a daughter and all the things, right? I, you know, my dad had the stroke and I was so young, I stepped into that role. But really, what happened too at a young age for me is I I lost my father. I mean, yes, thank goodness he was physically on this earth, but mentally he was different, and he wasn't daddy that I could rely on that was there to take care of me, like a catch-all, that kind of thing. Nope. That man was gone, and now I was the one caring for him. So later on in my life, I realized that I really had that relationship to grief. I lost having a father in the traditional sense of the word at 17. And then if you're a mama bear out there, you know what it's like when your child is hurting, when your child has a problem, whatever it is, you that feeling that you have is just magnified. It's a million times worse than anything else because you're just so desperate to fix it. And then with my husband, kind of a similar situation as with my father is I was grieving the relationship while he was still alive of having a partner, a partner in life who I knew I was going to lose. I had lost that partnership, even though he was still here on this planet. But I didn't really realize that even though I had lost that partnership when he was alive, just how different it would feel after he passed away. And dealing with those challenges of his cancer, but as I said, more so his mental illness and his anger and his resentment towards me and not understanding that I was going through something as well. And it was rough, boy, I'll tell you. And I've had peaks and valleys through these past 40 plus years of caregiving. But what I realized, unfortunately, it took me about 30 years to realize this, is that when I was ignoring myself, when I was prioritizing everybody else's needs before mine, I was doing a disservice both to myself and to my loved ones because I became exhausted, resentful, angry, burdened. All the things, right? I ate to cover up my feelings or swallow my feelings. It was too much. I was so quick to anger all the time. When I was showing up, I was certainly not showing up specifically with my father as my best self because I was annoyed all the time. And, you know, here as caregivers, we think we're doing the right thing, right? I'm taking care of, especially when you're in that sandwich generation as I was in, I'm taking care of my father, I'm trying to take care of my kids, I'm trying to take care of things at my office, I'm juggling all of these plates. When is there possibly time for myself? There wasn't. Or at least I believed there wasn't. It wasn't until I came to that realization and I started having physical manifestations of my stress that something had to give. And that's when I realized that it was not selfish to prioritize my own self-care. It never is. Because once I started doing that, I was able to relax a little bit. I was able to de-stress. I also saw that this was the story I was telling myself, that there wasn't time, that it was selfish, feeling guilty, all the things. It was a story I made up in my head. A common one, I think for most women, whether you are caring for an ill-loved one or not, if you're in the thick of, you know, being a mom and having other responsibilities as well, you feel like, no, I can't do something for myself. Well, I'm here to tell you, remove that story. That is not the case. Because once I did start prioritizing my own needs, I showed up as a better caregiver, as a better mom, as a better wife, as a better boss and team member, and all the things. And prioritizing your own self-care doesn't mean going and getting a manicure, although that's fine, something I'd do. But there are so many other ways that you can take care of yourself. Early on, one of the first things that I did was I set a boundary with my loved ones. I decided, you know what, three times a week, I'm going to jazz or size, which is what I did for exercise back at the time. And it's only an hour class. It's five or ten minutes from my house. For an hour and a half, three times a week, I will not be bothered unless it's an emergency. Nobody try and call me. Nobody tell me I gotta stay home. Nope. Your questions, your problems, your everything can wait. Of course, like I said, emergency, different story. But, you know, at first my family member was like, but wait, but wait, what about my homework? What about whatever it is? That's okay. I'll be back at 7:30 and we can talk about it then. And it was me setting those boundaries because in the past, if one of them needed me for something, I'd say, okay, it's fine. I won't go to jazz or size. I'll help you with whatever, I'll take you wherever, whatever it was. And no, that was not okay. Because for me, jazz or size, exercise really helped me de-stress. Of course, it was great for my physical body, but honestly, I feel like it was even more important for my own mental health. And when I was able to de-stress, I would come home a different person. I can remember showing up to class sometimes and just being so tightly wound up. Oh my gosh. And when the music started, I would be following the steps, but my mind would still be going with what was irritating me or worrying me. But I'll tell you, by the third song in, all of that flew away from my head. And it was like I could just take a big deep breath. So the key really is finding what that is for you. What activity it could be reading, it could be going upstairs saying, I am unavailable. I did this actually when my husband was dying. I would make sure everybody was good, everyone had what they needed, including him, and say, All right, if you're all set, I am going upstairs. This is when I was writing my memoir. I am going upstairs for an hour. Do not bother me unless it's an emergency. And I would go upstairs, close the door, and be in my solitude and able to focus on something other than the caregiving situation that was going on in my life then. Maybe it's you're going to take a bath, maybe it's call a friend, take a walk, going out to a support group. One of the ways that I have always received help and comfort is by joining support groups. Whether it was back in the day with my father, there was no online thing, obviously, in 1981, and nobody talked about caregiving. So I remember that there were support groups for stroke victims, but I don't recall there being support groups for stroke victim family members. But nowadays, there are. Regardless of what your loved ones' ailments, issues, illnesses are, I can guarantee you can find a support group. It is so nice to talk to people who get it. If you want to cry, they get it. You can tell them what's going on, they understand. Maybe they've had something similar and they told you what they share, you know, what they did and give you ideas that you never thought of. Maybe there are people who give you permission to go take a nap, a break, prioritize yourself, whatever that may be. That support is invaluable because I know that through the past 40 years, nobody understood unless they had literally walked in my shoes. They just didn't get it. And so I can't say enough about support groups. Something else you can do is ask for help. We all know what happens. You're in a situation and it could be the worst situation imaginable. And everyone says, let me know what I can do to help. Oh, thank you, thank you. Do you ever let them know? Probably not. Most of us think that we need to do it by ourselves. At least that's what I thought. Well, if I can't do it, I'm weak. I'm not a good enough caregiver. She did it, why can't I? You know what? That's not true. You have got to reach out and specifically tell people what you need and ask them. And believe me, they are more than happy to do it. Because think about if the table is turned. I know when I've been in those situations and I'm watching a friend struggle with something, and I so desperately want to do something to help her or make her feel better, but I just don't know. And it's hard. And if she comes to me and says, Listen, would you do me a favor and go food shopping for me? Or go to the store and get me these 10 things. Yes, I feel great that she actually gave me a task and I am actually doing something that will make her life just a little bit easier. So don't feel badly. You are actually doing that person a favor as well. Say no when you need to. Oh my goodness, for me, this is just such a big thing. I felt that if I said no, I think I'm a recovering people pleaser. If I said no, if somebody needed me to volunteer, I was like, you know, all they basically had to do was ask me, and I was almost guilt-tripped into it because, oh, they need me, and if I don't do it, nobody's gonna do it, and oh, it's not that big a deal. I can just help them with that. It's not gonna take up a lot of my time, and maybe it won't. But what I didn't realize was I, as a caregiver in my most active caregiving days, didn't have the capacity. I didn't have the capacity for that. And you know what? If I told someone that, and I don't even have to explain it, the reason for saying no. Actually, you know, have you ever heard no, period, is a sentence full stop. But if you're like me and you feel like you need an explanation, you could just say, I'm so sorry, I'd love to help, but I have too much on my plate right now. Done. What does you think the person's gonna do? Say no. It's okay. That is actually self-care. Saying no. And then how about thinking about scheduling in something fun that brings you joy, pleasure every single day, even if it's just for 10 minutes? Right now, as I'm recording this, I'm looking outside, it's beautiful weather, 59 degrees, sunny New Jersey in November. Why aren't I taking advantage of it? It's amazing when you just go outside, even when it's cold, honestly. Get some fresh air, if that's your thing, turn on the radio, dance, I don't know, whatever it is that brings you joy. Binge watch a show, right? If it makes you happy and helps you relax, give yourself permission to do it. We're not superwoman, superman. We're not those things. And that's okay. But maybe you need to take time for yourself and you need to research respite cares or adult daycare centers or in-home help, or maybe asking a family or friend if your loved one needs to be with someone 24 hours a day to just come and sit with your loved one, even if you're there. You know, sometimes just a different face, someone to engage in different conversation can be helpful. Also, if you currently don't meditate or journal, one of those kinds of practices, it could be helpful. And lastly, I'll say gratitude. A gratitude practice really will change your life. It doesn't have to be anything fancy, even though writing it down for me is helpful, even if in the morning or at night or both, you just say out loud or think to yourself, three things that I'm grateful for today. Because it will remind you that even though you're going through a very difficult period, there are still so many things in your life to be grateful for. So, happy National Family Caregiver Month. I am here for my caregivers because I'm still one of them, I think always will be. And it's hard, and all of you need to be saluted. Now, before I go, I would be remiss for not mentioning to you that the Sprinkle Effect card deck is now live on sale on my website. Very excited. And for a limited time, when you go to check out, you can use the discount code JOY10 to get 10% off the deck. I am obsessed with this deck. I have been thinking about creating it for years. I've hit a lot of stumbling roadblocks, and to actually be holding it in my hand and using it myself every day and love, love, loving it. I am just, I'm excited, and I'm excited to have you hold it in your hands because you know what? Whether you're a caregiver or not, all of us every day can use a little sprinkle. And the nice thing about this is you decide what sprinkle you'd need today. Maybe you need a sprinkle of courage, a sprinkle of resilience, or a sprinkle of joy. It's in here. Every sprinkle comes with three different cards: an affirmation, a quote, and a journal prompt to always keep your sprinkles top of mind. So we'll put the link in the show notes. If you have any questions, always email me at Debbie at DebrWiss.com or DM me on Instagram, debi.r.wiss. Thank you so much for joining me today, and I can't wait to talk to you next week.

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Debbie Weiss

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