This is the whole care network helping you tell your story. One podcast at a time content presented in the following podcast is for information purposes, only views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the whole care network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the whole care network.

 

For someone to say you’re so strong. I don’t know how you do it. Well, we don’t have a choice when a crisis hits you personally, your family, you rise up, you do everything you can right out of love, out of love and, and we didn’t have a choice and yes, I could have run away, but I didn’t. I chose to stay and I chose to rise up and do everything possible to be the best caregiver.

 

Caring for aging parents or other loved ones while working, raising Children and trying to live your own life, wondering how to find the time for your personal health and happiness. Well, you’re in the right place. Welcome to the Happy Healthy Caregiver podcast. The show where real family caregivers share how to be happy and healthy while caring for others. Now, here’s your host, Family caregiver and certified caregiving consultant, Elizabeth Miller.

 

Hello, everyone. Thanks for tuning in to the Happy Healthy Caregiver podcast, which is part of the whole care network. If this is your first time listening, welcome. This is a show produced biweekly to help family caregivers integrate self care and caregiving into their lives. Each episode has an accompanying show notes page.

 

So if you’d like more details about the topics, products and resources we speak about, or you wanna see the related photos, you’ll find the show notes by going on the website Happy healthy caregiver. com underneath the podcast menu. Click the image or episode number for the show. The link is also going to be available in your podcast episodes, description on whichever podcast platform. You are listening to this show on Come Cruise with me and some of my fellow care advocates in October of 2025. We’ve planned this respite filled self care at sea cruise with family caregivers in mind.

 

We have removed a few of the barriers we know caregivers could have. We’re giving you lots of notice over a year to make a plan for your care recipient to have backup care, an affordable rate with a payment plan option and just enough activities to connect with your caregiving community without interrupting the rest and fun. We know that you need. It’s a Norwegian cruise on one of their new ships called Aqua. We’re going to some great destinations including the Dominican Republic, us and British Virgin Islands and the Bahamas.

 

I hope you’ll make memories with us on the self care at sea cruise in the fall of 2025. You’re not only going to get the much needed energizing vacation but return home with a lifeline of support and community. You can learn more at bit dot Lee forward slash HHC self care cruise. I’ll also link to this in the show notes. And if you decide the book, don’t forget to choose Happy healthy caregiver as the answer for the question, how you heard about the cruise. By the way, if you’re a business looking to become a sponsor for this special self care at sea cruise, reach out to me and I can share the sponsor opportunities we have.

 

I’d like to thank our episode sponsor, Rare Patient Voice. Do you want to earn cash in exchange for your opinion? Rare patient voice or R PV? Helps connect researchers with patients and family caregivers for over 700 diseases and conditions for patients and caregivers. R PV provides the opportunity to voice their opinions to improve medical products and services while earning cash rewards, rare patient voice, helping patients and caregivers share their voices if you’re interested. Join the PV panel at Rare patient voice. com/happy, healthy caregiver. I recently finished The Keeper of Happy Endings by Barbara Davis.

 

And I got to tell you this is an enchanting novel about fate second chances and really hope it tells the story of two women whose lives are intertwined. Despite being decades in age apart. These two creative women find community and support through each other, which is a theme that resonates deeply me as a family, caregiver. The keeper of happy endings earned four out of five stars for me. I’ll link to it in the show notes if you’d like to check it out. My favorite thing is I think maybe it deserves some kind of round of applause.

 

Frankly, I finished all 12 seasons of Call The Midwife on Netflix and these episodes were longer than 30 minutes. Yes, it did take me a long time to go through them. I found this show to be some self comfort for me while I was eating lunch or hanging out by myself. So really just needing an opportunity to check out for a bit. Call The Midwife is a British drama series based on the Memoirs of Jennifer. We, it’s set in the late fifties and sixties in an impoverished East London.

 

The show follows the lives of midwives and nuns at Nar’s house and it’s a nursing convent. The series highlights their daily challenges and triumphs as they provide medical care and support to the impoverished community and they deal with really issues that happened such as childbirth back in the times and poverty and societal changes with medicines and drugs and different procedures and treatments. And honestly, I think you’re going to fall in love with the characters. I’m anxiously awaiting season 13. I’ll link to the show on Netflix so you can check it out.

 

Let’s meet today’s caregiver in the spotlight. Jessica Patay is a reformed perfectionist and dedicated caregiving mother provides compassionate support and resources to other moms, caring for Children with disabilities or unique needs. In this episode of the Happy Healthy caregiver podcast, Jessica shares how she manages and supports her son Ryan who has a rare genetic condition called Prader Willi syndrome while maintaining her own well being. At the same time, we discussed helpful and unhelpful language from friends and family and explore the various ways caregiving mothers can find support through Jessica’s community book podcast and retreats. Jessica also highlights the difference between self care and self comfort. Enjoy the show.

 

Hi, Jessica. Welcome to the Happy Healthy Caregiver Podcast. Hi, Elizabeth. It’s so good to be with you. It’s so good to be with you. I’ve been wanting to spotlight more stories like yours. And so I’m just so grateful for you and the time that you um are, are committing, I know you’re uh seizing the day before it seizes you. So I really appreciate our time together, Jessica and we always clicked off the show with some.

 

Um This is a very fancy jar. It’s called the happy, healthy caregiver jar and in it is like 100 and 50 quotes and sayings and things that inspired me as a caregiver. Uh And then I created it as a product. So I gave it to my sister when we transitioned care from my mom, from me as the primary to her. Uh And then I used to stuff it full of other quotes and stuff when I would go see them. I’d just be like, oh, I’m gonna put more in there and sometimes I’d write in my own things too.

 

And so now it can be a gift. It can be a gift for other caregivers. But let’s see what, what the jar is gonna pull out for you today, Jessica, I’d love to get your thoughts on this. OK? It says be strong enough to stand alone, smart enough to know when you need help and brave enough to ask for it. Mm That’s good. Be strong enough to know you have to stand alone, strong enough to stand alone, smart enough to know when you need the help and brave enough to ask for it.

 

So I think we think that like be asking for help is like bailing. Did you feel like that? I, well, I don’t, but I think our culture teaches us this. And so I am always reminding moms that this is not a one person, two person job, you know, exponential motherhood requires exponential support and we have to ask for help. I mean, just parenthood alone is a lot. It is a lot and we’re made to feel that we need to do it alone. This country and culture of values independence and, you know, pulling yourself up by your bootstraps alone.

 

But that is a fast track to burn out. Yeah. Yeah. Even the front part of this, like, be strong enough to stand alone. Like, I don’t even necessarily love that, but I love the best of it. The smart enough to know when you need help, brave enough to ask for it, I think is the critical part of art of, of this. And um well, let’s get into your story, Jessica, like tell us a little bit about, you know how caregiving entered your life. Thank you Elizabeth. So I say that my second son, Ryan is the one that made me a caregiver.

 

Uh a little bit about my family. I’ve been married to my husband Chris for 20223 years. We have three kids in the adult ish phase of life. My oldest is 23 and is finishing up last semester of school uh college and then Ryan is 21. He has um you left in the school district. He’s in the transition program. And then I have a daughter Kate who is 18 and working and taking classes. So yes, that phase of life. Um you think it gets easier and in some ways it does, but it’s very it’s, it, it has its own challenges and I love how you say adultish.

 

It’s like, yeah, they, they, they want to be treated as adults but then there’s certain situations you’re like. Oh, yeah. No, you really, you really still are tethered in many ways. It is exciting though. When they get off the payroll. I’m gonna tell you like, but our youngest just got off the payroll and we felt like we got a raise. It was amazing. Um Well, so your second son, Ryan is now 21 but still in the school system, you said um what, how did you realize that Ryan was um neurodivergent and in some ways.

 

So right away when he was born, he could not cry, couldn’t suck. He didn’t wake up to eat, he didn’t cry because he had a wet diaper. In fact, he didn’t cry his whole first year of life. Um So we spent a month in the hospital not knowing what was wrong. Um There were medical issues going on and, you know, we just, we, I, we had no idea and this is before smartphones. So I wasn’t looking up anything. Uh and even the two nights that I slept in my own bed, I did not go to the computer to Google because I was just really trying to pro protect my mind and heart.

 

But my husband googled the symptoms that were told to us, you know, failure to thrive and hypotonia and so on. And he found Prader Willi Syndrome, which is a rare genetic disorder. And so thankfully, we did get an early diagnosis. Ryan was five weeks of age when our pediatrician called to tell us and Prader Willi Syndrome, I always say there’s no cocktail party uh explanation, there’s no short explanation. So I’ll do my best. But when you’re born with low muscle tone, all your milestones are delayed. Ryan didn’t walk till he was three, which was even uh slower than the average in PWS and he was on growth hormone uh starting in infancy, which is a, is a great help.

 

Um And it is the only medication currently indicated for Prader Willi syndrome. So again, milestones are the focus in the early years. OTPT speech, you know, that those services carried on all the way into high school. Um And if PWS makes the news, it’s because there’s an insatiable food drive that kicks in in childhood. So kids are academically, cognitively, emotionally, psychologically affected. And there’s this food drive that kicks in in childhood. So by the time Ryan was 13, the food drive was um so uh increased that we needed to lock our kitchen.

 

I thought we would have to lock our kitchen when he is five when you read about PWS and you see the really crazy array of symptoms. You’ve got medical, you’ve got, you know, behaviors and anxiety and you’ve got this food drive. What, what are you kidding? Me, this is a thing. This is an actual thing and it’s life threatening kids and adults with the syndrome pass away from overeating because they don’t have the gag reflex. Most people, if they eat themselves sick, they will throw up PWS.

 

There’s no gag reflex. So kids and adults will rupture their stomach. It leads to a premature death. It’s just terrible. Right. Terrible. So, um, we are very vigilant. I am very vigilant. I am always checking the kitchen because I’m not the only person who lives here with Ryan. I’m not the last person to go to bed. So I’m always always checking and he will notice that one second that somebody walks away from the fridge to go to the bathroom or gets distracted and he’ll grab something. So we have to be very vigilant.

 

Um Thankfully, we didn’t have to lock up till he was 13 and by the time he was 16, we had to become extremely, extremely vigilant. What, what is life look like for him? Like as a 21 year old now and for you too, like as the, you know, as the um as the caregiver for him and the parent. Thank you. So, you know, Ryan is pretty impacted. Um he cannot be left alone ever. I mean, can he be in his room alone? Can he be in the family room alone?

 

Can be in the back room or backyard? Yes. Yes, those kinds of things. But he will never be at the house without somebody watching him. Um He, we probably knew by the time he was in third or fourth grade that he wasn’t going to get his high school diploma. And he’s, and he’s a deep soul and he’s compassionate and he’s intuitive and he’s a sweetheart and a ball of anxiety. So, I would say in our day to day lives, certainly managing the food drive. Um, how that looks like besides living with a locked kitchen is we don’t go to restaurants as a family hardly ever.

 

We did for his 21st birthday. Um you know, grandpa might take him out for his birthday. His brother just took him out for his birthday. But as a rule, we try to avoid parties, restaurants, we don’t do family vacations anymore. All five of us because his anxiety is so high. He becomes, it’s irrational, but he becomes really insecure like he’s not going to get fed on a trip. Now, one on one with me or one on one with Chris. My husband, he does pretty well. So we will try to do those one on one trips with him because we do those trips with my other kids for the four of us without Ryan.

 

Um, he goes to the transition program during um the school year. So, you know, kind of like a school day, Monday through Friday summers. He has summer school, which is only a band aid. It’s you know, 803 half days of the summer and when he hits 22 which will be June 2025 he will end his time in the school district. And that transition feels the scariest, all transitions I think are scary for caregiving parents. And this one is a big one because we’ve had a plan for so many years and once he exits the school district, there isn’t a solid plan.

 

It’s something that we have to create research, work really hard and hope and pray that it works and that he’s in a good situation. I wish there was more, that’s a long time of life, right from, from that age of 22 till, you know, long out into the future. Like I really wish, you know, and as a sibling of somebody who needs that also those support systems in some ways, like we’re, we’re failing, I think as far as our, our adult systems go there, I wanna kind of wheel back a little bit Jessica to the early part when you know, the, the diagnosis and what that was like for you, um, navigated that grief. Really?

 

Um um And you called it, I think altered motherhood somewhere. I read that. Yeah. What was that like? How did you kind of, you know, come to accept this big huge life change that just was put in front of you on a, on your um on the day of birth. It was devastating. I it was just so shocking. I mean, just such a crazy, it wasn’t like, well, your child has diabetes and that is not to minimize diabetes. But I could wrap my head around that. Well, it’s not a rare disease.

 

It’s not a rare disease. But here we are with this really rare disease with this really weird combination of symptoms. And, you know, I was, I was a perfectionist. You know, I went into marriage. I, you know, with this with such crazy high ideals and expectations because I came from a really unique is just the, the nicest way to say it, unique family situation. Uh And I wanted to create this like perfect little nuclear family with traditions and, you know, everyone’s close and committed and no divorce and just all of it. Right?

 

So I went in with um such high ideals of what I wanted to create and it just was shattered with a diagnosis. And so yes, I grieved. Yes, I, I was just so full of fear and what ifs and anxiety. Thankfully, my husband and I got plugged into support groups right away for the diagnosis. There were support groups in our area in Los Angeles. It was unbelievable that we found something so close by. So immediately we got connected to other families, we made friends with other couples and it really, really relieved us to know that we were not alone and some of the bad is off of what’s the name is there an organization that kind of helps with the support um for the for this diagnosis. Yes.

 

So where we live in California, there’s a foundation called Prader Will Found PC f.org. And then there’s a National organization, Prader Willi Syndrome Association uh that is based out of Florida to those for sure. Thank you. Thank you. Somebody’s listening and, you know, I’m sure too as you were grieving this and kind of, you know, sharing your news with the world and throughout the years, these 220 years of um being Ryan’s mom and Ryan’s um caregiver as well, like what are the things that people like your pet peeves about what people say or like preferred language?

 

Because I think that’s all something it does change over the years, I feel like. And so if, if we’re asking you Jessica, like, what are your pet peeves about? The things that people say and the things that they could, could offer or say better? Um Well, I would say when people say God only gives special kids to special parents that’s not helpful at all. And then you’re just minimizing the parents who have neurotypical Children, right? Um I think when people say God doesn’t give you more than you can handle, I don’t believe that.

 

I don’t think it’s sound, I think people just try to offer things to make you feel better. I think they’re well intentioned, but they are not helpful at all. Um for someone to say, well, you’re so strong. I don’t know how you do. It sounds like such a compliment. Again, I would rather someone acknowledge. Well, this must be quite a difficult and challenging journey. How can I offer support? I would like to support you. I would like to walk through this with you or I admire you and I would like to learn from you, you know, something else other than you’re so strong.

 

I don’t know how you do it. Well, we don’t have a choice when a crisis hits you personally, your family, you rise up, you do everything you can right out of love, out of love and, and we didn’t have a choice and yes, I could have run away, but I didn’t, I chose to stay and I chose to rise up and do everything possible to be the best caregiver. Right. Right. I appreciate you saying all of that because I think, you know, it is probably well intended, but until we kind of know better, we don’t do better.

 

And so maybe this will kind of catch people’s tongue before they, before they um say out, I’m glad that you found your community. Um I initially, but then you essentially created your own community and tell us a little bit about that journey how that came about. Thanks. So I created, we are brave together. It’s a nonprofit organization that’s been around for seven years and our intent was to combat the isolation, loneliness, and burn out and compassion, fatigue that caregiving moms face. And so we launched with a support group in person in Southern California and started off with one retreat per year.

 

And uh we grew, we have grown from there to then offer what we call connection circles are our support groups. We have them all across the United States, virtual and in person, we have grown from offering one retreat per year a weekend retreat that we subsidize 2100 to 225% the cost um from 212 to 224. So we um we’ve grown tremendously and we have our own podcast called Brave Together Parenting. And so we’re just all about preserving and protecting the mental health of caregiving moms. And uh you know, when I switched from why me to what now, then I was open to the possibility that something meaningful and beautiful could come out of crisis or chronic hardship or this awful diagnosis that was delivered.

 

And that shift just left me very open and waiting for some idea to fall. And the idea landed. I love that, you know, we talk sometimes and as a coach like about uh care for caregivers, about worrying and how worrying is just really not very productive um and fear based type thing and it really is action that can help you move out of that space of like worry and fear. And that’s essentially what you did, Jessica and starting we are brave together is, it’s, you know, what, now, what action can I take?

 

Like, rolling up your sleeves and kind of that pragmatic practical of like, ok, this is, this is where I am. How am I going to move forward and like, and wouldn’t it be fun to kind of take people with me? Like, let’s, let’s do this together? Yes. Well, and I knew that I know that caregiving moms are exhausted and overwhelmed. So I thought if I create community and they can show up and if, if all they do is participate in our, you know, private Facebook group because it’s a great way to connect or ask questions or seek resources. Great.

 

If you’re able to jump into a connection circle or come to a retreat even better. And if you know, maybe you want to listen to the podcast because it’s just inspiration and practical resources in your ears and that’s accessible and easy. Wonderful. We’re just trying to put out content in all different kinds of ways to really support moms. Yeah, that’s relatable. And in your story of, of, you know, why me to what now also is very relatable for me. Um And kind of the, the timing is pretty close.

 

Like I was, I was founded in 22022. So we were kind of on the same, same thing. Well, I love the idea too of retreats and things like that. We’re um taking a group on a cruise next year called Self Care at Sea. So I’m excited about that and I think that, that it’s more than just about the rest, but it’s about the lifeline that happens when you are in this like, and I’ve been a, a guide for caregiving retreats with Brutally Beautiful is another organization that I’m affiliated with.

 

And, you know, you see all these people kind of come in and they are brave. Right? Just in showing up like a lot of them don’t necessarily know one another, right? And they’re coming in and then they get very transparent and vulnerable and as guides and I’m sure you do this to Jessica. You are, you are being vulnerable to so that they feel safe to do that. And then you leave right with this lifeline of caregiving community and that’s very sustainable. Yes. Yes, it is sustainable. And it doesn’t mean you have to have, you know, 5003 people that you’re keeping up with if you have one or two people that are in your corner that are part of your lifeline.

 

I love that, that phrase because it is, it is a lifeline. We are a lifeline to each other, whatever shared lived experience, you know, whether it’s loss or divorce or death or caregiving or I don’t know a terrible accident, right? We have to have people in our life who understand we have to have people who get it is what I always say, girlfriends who get your sacred and mandatory and it’s just comforting. It’s transforming. So that cruise sounds amazing and, and I mean, yes, the treat to get away and have a break from caregiving is really, really important to have some space away, which is why we created our retreats.

 

And you have, you feel like you, you leave with a whole new group of dear close friends. Yes. And you’re just someone you could send a quick text to and like, you know, maybe they’re new to this food drive problem and they can text Jessica and be like, oh my gosh, help me, you know, and then you’re like, do this, you know, help, try this, try that. And I mean, that is to fast track people to the resources. Um And just to listen, amazing, amazing. Um we talk about your podcast too.

 

I love that your fellow podcast host and it’s called Brave Together. What makes it unique or special? Well, we, we launched it during uh 2500. It was actually in the works before the shutdown. Thank goodness because it was a way that we could offer content. Uh that was accessible because, you know, we’re all about the power of gathering and gathering in person mostly. And then that was taken from us. So I’m so glad we were able to launch the podcast in 2500. It’s gone through different um uh seasons of different types of episodes.

 

And right now we have ask us anything episodes with a clinical psychologist and a coach, both who are also fellow caregiving moms, Doctor Zoe Shaw and Susanna Pace Lavell. And so we offer, ask us anything episodes, we offer story episodes. So a mom, a sibling could submit a story 210 to 700 words. And then we have them actually record themselves telling the story and then we interview the writer and slice it all together beautifully for our story episodes. Uh We also have our practical episodes or expert episodes that uh we write a coach and advocate, an attorney, you know, an expert in some way to talk about a particular topic.

 

And then something new for season seven are, is our thriving adults. So we’re interviewing adults with disabilities and hearing how they’re thriving. What do they want to tell parents? I can’t wait. So that’s so exciting. Well, I mean, that was a whole lot of stuff that makes it special and unique. And I listened to, I look forward to listening because, um, you know, we mentioned before the show, like I’m a sibling caregiver, support caregiver for my brother. And it is a totally different path to navigate resources and, and help for him.

 

And, you know, he does not have like a diagnose like a really clear diagnosis. It’s like intellectual developmental disability is very broad um diagnosis, but he certainly has a lot of behavior and things I think that would help us. So I’m going to be a new follower and listener um for that. And you know, you are you um you credited with the superpower of honesty and truth telling and the trenches of motherhood. Like what is? And I, I love that because people need that space to be really, really transparent on.

 

It’s like, what are one of your truths about motherhood that um you know, that, that has been well received, I think by your community. Well, one thing I say is that, you know, it’s ok to say my kid is awful and my kid is amazing and my kid is awful again. It’s ok. It’s ok to have days where I don’t really like my child because I’m struggling with their behavior. So I’m struggling with this, that or the other. It’s ok to say that it doesn’t mean you don’t love your child.

 

It doesn’t mean you’re not a fierce advocate for your child, doesn’t mean you lack compassion, but you’re human. You are human and you’re allowed to be human as a parent, as a caregiver. Uh Something else I say is that just because we grieve the diagnosis or the disability or the impact on your child’s life and your family’s life doesn’t mean you don’t love your child. Yes. Yeah. I, I raise that kind of too like, as two things can be true at the same time, you know, this, the year of 2014 in particular was like a crazy spiral year for our family.

 

And, yeah, there was a lot of really cool stuff that happened in that in that year too. So, it’s like not an all or nothing type of mentality. And to your point, like, we’re not robots, we, you know, we show up differently and I know sometimes I don’t even like myself. So it’s ok to like, you know, other, other people um, where you don’t wanna be in your own skin. Well, you’ve, you’ve put together a project um for you and other folks uh in similar situations. Um It’s an anthology.

 

I love an anthology where you get a lot of different types of voices called becoming brave together, heroic, and extraordinary caregiving stories from mothers hidden in plain sight. Tell us about this. Yes, becoming frame together. Tell us more. Well, I’m a writer and a lover of words and I had this idea of really, you know, gathering a collection of stories and not just mine. And yes, someday I will do my own book, but I’ve had the privilege of using my voice for many years. And I wanted to give that opportunity to my fellow caregiving moms because I’m all about supporting and elevating my fellow women and mothers.

 

And so also I know that the impact of hearing 22 stories versus one of my, you know, a book just of my stories can have a really powerful ripple effect. I think this is my own. I’m not a psychologist. But this is my own little psychological theory is that when we know one person in our life who has a child with a disability or medical complexity or even mental health struggles, we only know that one person, it’s really easy for us as the family or friend uh to minimize the intensity and severity of what they’re going through as a parent.

 

But here you have a book sharing 22 stories representing different diagnoses, different ages of Children. And it is eye opening and heart opening. And this is, you know, the feedback that we’re getting from family and friends and strangers. I didn’t know, I never knew. I never realized. Wow. So I am excited to have these writers, one be validated as parent caregivers and be validated as writers, but really to share this with the world and hopefully they just have a little more grace and compassion and support for caregivers.

 

I love that. I think this would be a great, a great book for fellow um moms, caregiving moms like yourself or people who are working with Children with different abilities. Um and coming in contact with people with different like it, it’s, it’s um I wish the people at my brother’s Bingo Hall would read it like, yes, yes. It’s so frustrating. He recently got kicked out of Bingo Jessica like it’s so heartbreaking because yeah, people just don’t get it. They don’t talk about. Let’s let’s change gears here for a second and um and I’m gonna link to the book of course, and I put it in the Amazon store under Caregiving books too because there’s, you know, like you said, we don’t have time to kind of like go looking through all of these different resources.

 

So we’re going to help fast track you through the, you know, happy healthy caregiver Amazon store to the caregiving books that we feel like could potentially um fit your situation. I also have a curated page like a different caregiving communities. So whether you’re sandwich generation dementia. Um And so for moms and dads uh or someone filling that mother or father type of role for folks. Um and kids and even people like myself who I’m kind of like, I’m not a parent to my brother, but it’s like somebody now that our parents are deceased, we have to kind of play that role, so kind of curating those resources and I’m happy to kind of include that in that space as well.

 

Um We’re gonna switch to self care type of thing because like that’s, this is where the magic happens. Jessica, like you’ve lived through, you know, 21 years so far of raising, raising kids alone is, is tough and then you’ve got a kid that needs more, more love and attention in some ways um from you. So we want to know how, how, how you’ve infused the self care. So what did, what did it look like, like in early days, like what do you tell your, your moms who are young at this and trying to figure out how to infuse some time for themselves.

 

Where do they start? Well, I always tell moms who are early in their journey to ask for help from the beginning, expect, you know, if you have a spouse or a partner, expect that they’re going to be hands on and helpful. Don’t assume whether you’re working or a stay at home mom that it all falls on you. I mean, that is our culture, right? That the mom is usually the default parent caregiver. Um But I would say ask for help from the beginning so that you establish from the beginning a routine of taking breaks for yourself and, and be intentional, you know, really think about am I engaging in self care which is investing in practices that support your mental health, help you access joy, help you access peace um or you engaging in self comfort, like getting your nails done or, you know, watching Netflix and having a glass of wine, nothing wrong with self comfort practices, but they will not sustain you for the long haul of caregiving or, or just even parenthood, parenthood is hard on its own.

 

So I, I encourage you to really evaluate what you’re doing and what is, what, what is actually helping you. You know, I say practices like meditation, prayer journaling, um movement exercise. Um you know, creative practices help you access joy and peace. Whether that’s, you know, cooking, reading ceramics, I don’t, you know, whatever it could be anything if golf is your, I think it doesn’t really matter. Like the list is endless. But even before that, you have to really believe that you deserve to invest in your own mental health as a human being, you have to believe that or any ideas that you or I come up with for self care, for our audience, it doesn’t matter, but you have to believe you’re worthy of investing in and it is not selfish to invest in your own mental health.

 

No, it’s, it’s, it’s critical, especially, you know, we’re not talking about like, you know, they say the average caregiver is a caregiver for 4.5 years. But in, in the case of, of yours, Jessica and many other moms and dads out there, like when you have give birth to a child um that needs special care, like that’s a life, a lifetime of, of care needs. Uh So that’s a recipe for burnout. If you think that this is a solo caregiving thing, that’s, that’s not gonna work. Um And so finding the people, finding the technology, finding the different systems.

 

And I think those I’m sure that that’s what your community is also offering is a lot of uh tips about that. And I love that your, your definition of self care. I’ve never really looked it up to even to see what it says in the, in the dictionary. But I love that you make the distinction between self comfort and self care because people will say, oh, I need the glass of wine for my self care. But you’re right, like that’s not self care actually, you know, that’s not so great for us in the long run.

 

Um But it could, it could be comforting. But for me, I define self care as anything that is going to give me energy. Uh that’s going to provide peace of mind or is just pure joy. Yeah. Would you add anything to that to, to align with your definition? I think, I, I mean, I think that’s perfect. I think anything that helps to access playfulness and joy and peace um grounded um that really gives you, I love how you say gives you energy. I’m gonna add that to my list because um we need more energy for this role that we’re in and we think sometimes that certain practices might zap our energy, but actually it adds to our energy and pay attention to what you’re doing like afterward.

 

Do you feel better or do you feel worse? And nothing is a, is a quick. So I don’t mean that like, oh, I, I meditated for five minutes and I, I still have monkey mind and I still have this anxiety. No, it’s, it’s, it’s a, you know, it’s a daily practice you know, that will have an effect. It’s not a one time thing. So uh I think the way you define it is beautiful and I agree. Yeah, it’s thank you for that. I um I do think it’s a lot of trying on like trying on clothes and seeing like how does this work for me?

 

Because your, your, your idea of self care and mine is gonna be different. I found a link on your site where you have like some bite size self care suggestions. I’m going to put that out there. What, what do you do that energizes you, Jessica. Like, what, what did you do or what do you do now? Well, thankfully for me, I, I’ve always been compulsive about exercise and I keep meaning to like, write a piece on this because it really saved me because when I got married and I started having kids and I was running and when I say running, I mean, slow jogging, um I, you know, I, I had to like, I just had to, I had to sweat, I had to exercise.

 

And so, you know, even when motherhood began, I would ask my husband Chris like, hey, can I just get a break for, you know, a jog? And because I had to, I couldn’t just stop like, oh, everything stops because I’ve become a mother. And um I didn’t want to deny myself something that really energized me that brought me joy that helped me sweat out stress. And so, um, I just always continued that practice. Um, fast forward to now I’m not running. I thought I would run till I was like 5003.

 

But I’ve stopped. Then your body is like, my body, I’m 53. This week is like, my body is like, no, no more that, yeah, walking. I’m a walker. Yeah. Yeah, I love walking but I just yoga, hot yoga and I, I will not skip it. I go at least three times a week and if I can get more in, I will get more in somehow. But I, I love that and I definitely love, you know, the calm app and I like reading and I like, um you know, walks with life giving friends, all of that is very, very helpful and sustains me for the long haul. Yeah.

 

And some of them take minutes and some of them take a, you know, maybe a half hour or an hour. But you’re not talking about like huge, huge chunks of time. Do you have a shout out for your yoga studio? Oh, sure. I, so the, the yoga studio that I practice is cafe Yoga in Torrance and it’s a great community with a wonderful group of instructors. So if anyone is in the South Bay of Los Angeles and you want to try it out, please try it out.

 

How do you spell it, Kef? I, OK, I just put 122 Fs in there. Well, we’ll check that out. I go to a hot works. It’s like AAA, whatever a boutique studio and, yeah, people would think like you’re crazy. That doesn’t sound energizing to sit in 100 and 20 100 and 25 degree heat and sweat. But I leave there energized. Yeah. Would make sense. Right. It’s infrared energy and, um, in that particular studio. So, so shout out for our favorite little yoga places. Um And I do Pilates and other stuff in that I can do whatever I want.

 

There’s um six different classes um or more than that, even six studios, 12 classes I think. What do you um All right. I think we should head into the Lightning Round. So this is my book. It’s called Just For You, a Daily self care journal. And writing was very therapeutic for me, Jessica as a caregiver to just kind of process and like you say, whatever you want, even if nobody ever reads it. And I wanted to give folks an easy way to try that on to see if it works for them.

 

So written with caregivers of mine but not ne necessarily just for caregivers. So I put a couple bookmarks in here. Let’s see what you got. Um n one name, one place you’ve always wanted to visit. Oh Italy. Uh There’s a part of Italy I haven’t been to, I mean, I, I went to Italy 24 years ago. Um So I haven’t been in a long time but I would love to go to like Positano and the Amalfi Coast. Uh Just sounds so dreamy. We just, we did that in 2022.

 

My daughter did a backpacking trip after college and we met her at the end and Amalfi don’t wait too long. Jessica. That’s what I’m going to tell you is like you gotta be fit to go to the Amalfi Coast. It is not a place for 80 year old people who are have mobility issues. Like you don’t see that in the cute little tiktoks and all of that. But you got to go 500 steps to the restaurant, 500 steps afterwards to get to the beach clubs and then stay on the beach.

 

That’s would be my other tip is like you can always do the water taxis and then you can take the cabs to go and have the amazing views. But I think being on the water level was a lesson, a lesson learned for us. When you’re ready to go, reach out, I’ll share more tips with you. What are you looking forward to doing like this week? What am I looking forward to doing this for this month? That could be, you know, in the near future. Uh That is a good question.

 

I’m trying to think about what’s coming. Well, I’m excited to do our first retreat in Savannah, Georgia actually. Yes. Yes. Yes. So we’ll be, um, we’ve rented a house on Tybee Island. So I’m very excited. I always love to explore a new location for a retreat and I’m very excited about that. Yeah, you’re going to love it. Um, and not in July. I hope, you know, it’s not going to be this month. It sounds like so good for you. It’s beautiful. And I went for a sister’s weekend.

 

So, with my sisters and my cousins who are like sisters and we had an amazing time. I hope you get to do some karaoke at this little bar that we went to. It was so fun. The kind of karaoke where nobody knows you. I, I love that so much. Ok. Is that, is that Tybee Island? Was that Tybee Island? Oh, I’m looking that up. Yes, there’s all these little bars and restaurants. So, so fun. Ok. What is there any new skills that you’d like to develop? Ok. That is a good one.

 

Um, I go, I’ve been thinking of while you’re thinking, um, my daughter made me this woo. So it’s like almost, it’s almost like better than a stress ball. And I love bees. My maiden name is be he. So she made me this little w will be where she was learning how to, I think this is crochet but like it’s kind of inspired me like, oh, maybe I wanna learn how to crochet. Um But yeah, is there anything that you’re thinking about, well, I mean, I’ve definitely thought about this off and on.

 

I even, like, took a couple lessons but learning to play the guitar, I think would be amazing and really hard. I know. It’s, like, really hard to get over the hump. But there, the desire is still there. I just sometimes think, I don’t have time for another hobby. I mean, my husband and I should pick up a hobby together before I pick up another hobby for just me. So, uh, that’s, yeah, but that would be fun. I used to go to guitar lessons with my daughter and I have to sit in the room so that when she was practicing at home I could be like, that doesn’t sound right or, you know, whatever.

 

Um, but it did look fun but you gotta, gotta wear those little finger tips. I gotta, they’re gonna get strong. Um, and you can’t have nails, no nails, which I don’t know, nails anyway. I’m a contact lens wearer. So I feel like I’m stabbing myself. Um, and then as far as a, uh, a great sport for maybe both of y’all. I don’t know. Have you? My husband and I picked up pickleball and we’ve been married about the same amount of time that y’all have. So, is that something you’ve thought about?

 

Um, you know, I’ve thought about it. Uh, ok. My husband grew up playing tennis and so he would just, he would probably be natural at it and I did not grow up playing tennis. So it would be a little bit of a struggle for me. I have thought of it but he, my husband’s obsessed with stand up paddle. So, every Saturday and Sunday he’s out on the water for, you know, a few hours. So, I don’t really know where we’d fit it in. I don’t think we’d want to play in the afternoon per se.

 

I mean, I guess it depends on the time of year. So afternoons could work maybe on a weekend if we had a sitter. Yeah. Yeah, I thought about it because people do lots of fun and I never play great exercise. And what we do have folks on that have played tennis on our tennis team and I feel like sometimes they’re even more challenged in a way because it’s different. It’s same, same but different. You know, there’s a NAD but it’s, the ball is different and everything. All right.

 

Last question for you, Jessica is, what do you geek out about? Oh, words. I just, I mean, I just love good writing. I love good books. I, you know, I love listening to people who are so smart and like, oh, that was a good word, you know. Um, I, you know, I certainly geek out about, um, you know, self help, psychology, personal transformation stuff. So I, I love listening to podcasts. I love reading, you know, nonfiction, good stuff. What is there any works of words that you would recommend?

 

Oh, gosh, um, or like favorite podcast? Like, I would just listen to Julia Louis Dreyfus’s podcast this morning. And I literally was listening to her and thinking she uses good words. So maybe check it out if you, um if you haven’t, I think the episode I was listening to was um with um Julie Andrews, but it’s a little bit about aging well, and you know, all of those things to see the, how, how they have evolved. Some of these people that we respect, how they have evolved and elevated and they, you know, learn new things.

 

I it’s so hard for me to choose like one book or one writer or one podcast. Um Oh, goodness, I should have this, like, not easily accessible. Um Do you love to play Scrabble? I bet you’re good at. I do, I do love Scrabble. I, I do the word all now. I don’t know. It took me forever to do word all. I thought I do the word. It’s pretty much part of my daily routine. Yes, it is now incorporated into my daily routine. Um OK. So some of the top podcasts that I listen to um for fun would be armchair expert.

 

But Dax, who’s one of the hosts, you would never realize like how smart he is. He is such a great host. He is asked great questions. He is so knowledgeable about so many things. But then they have, you know, a whole variety of types of episodes. So that’s a fun one. I like listening to. Um Well, I love, love, love how I built this with Guy Raz who is uh a host, interviewing entrepreneurs. And it’s really, really fascinating. He’s a great host and then he also has an advice line which I love listening to.

 

Um I like Laura Tremain’s 10 things to tell you podcast. Um Of course, I listen to a lot of, you know, disability and parenting podcast. Um I love doctor. She’s podcast, even though I, and, you know, out of the little kid parenting stage, I still like listening to, you know, like conscious parenting podcasts. Um It affirms and validates like what you went through. Yeah, you’re still processing it. I’m sure because like you’re, you’re processing it while you’re changing the tires and washing the windows and all of that.

 

So it’s, it’s, it’s a unique situation for sure. Um And I appreciate all these recommendations. We’ll link to that. So I’ve listened to a couple of these, but I’ve a few of them are new to me. So I add them to my, to my cue and kind of put something in there. Sometimes. I’m like, why I just listen to Caregiving podcasts. I need something else, but I’m a big audio book and you are. Oh, that’s so good. Yeah, sometimes I read and listen, like I’m like, ok, I’m reading while I’m in bed.

 

Ok. What chapter is on? Update my audio book? Listen to that like, yeah, with the Libby app through, through the library? Amazing. Well, is there anything else Jessica that you’re wishing that we, we mentioned um any parts of parting words of wisdom for, for caregivers? And then how do people stay in touch with you? Well, I just want to say you’re not alone and you don’t have to do this alone. And although caretaking can be um a solitary act, you don’t have to do this alone. And it’s really important to have a few people in your life that are regularly in your life, whether that’s over a text over a video over, you know, coffee or a glass of wine that are life giving and that really understand you and support you fully.

 

Thank you. Thank you. And how do people find you? You can find me uh through our Instagram at. We are brave together if you want to send a message, if you are caregiving, Erin and you’d like to join, we are brave together. Just go to our website. We are brave together. org everything that we offer you will see on our website. You’ll see, you know, our podcast, our book, our Connection Circles, our retreats, we have scholarships for the retreats. Um We have a Facebook page, we have a secret Facebook group.

 

So if you are care, you want to get involved, we will help you get involved. We’ll help you find others in your area and um you can always, you know, send any kind of inquiry to. Hello at. We are brave together.org. Amazing, lots of opportunities for people to kind of get connected and meet them where they are. And Jessica, I know you’re living this, but you’re also like pulling people on the train with you. Like let’s let’s go and helping yourself while helping others. And um I appreciate what you’ve put together these past seven plus years. Amazing.

 

Thank you. It’s honestly, it’s so joyful. It doesn’t really feel like work. I mean, maybe schlepping boxes to a retreat, feels like work, but everything else doesn’t feel like work. And I, I feel so lucky to be doing this work and, you know, involved in my fellow caregiving mom’s lives. Thank you so much for coming on the show. Thank you.

 

If you are a fan of this Happy Healthy caregiver podcast, then you’re gonna love confessions of a reluctant caregiver podcast, which is also part of the whole care network family. Join sisters JJ and Natalie who offer a candid unfiltered space to confess the good, the bad and the ugly of being a caregiver from heartfelt confessions to insightful guest interviews. They’ve got it covered. You’ll laugh, cry and everything in between. Tune into the confessions of a Reluctant podcast on your favorite podcast platform or visit confessions of a reluctant caregiver.com.

 

Thanks for joining us today on the Happy Healthy Caregiver podcast on the whole care network. As always show notes that a company today’s episode can be found on my website Happy Healthy caregiver.com. Just look under the podcast menu for today’s episode image and that will take you to the page with the links and information we spoke about today. You’ll also find other resources on the website along with links to purchase the just for you daily self care journal. When you purchase from my website, you’ll get a signed copy and for a limited time free shipping. If you’ve enjoyed what you heard today, consider subscribing to the show on your podcast platform. It really helps other family caregivers find the podcast and you’ll automatically receive our biweekly shows in your podcast listening queue.

 

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