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.

 

Like don’t, don’t judge like you are surviving and if you make it through today, you have more opportunity to do something else tomorrow, but there’s nothing wrong or bad about what you had to do to survive.

 

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 to 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.

 

Hey there. Thanks for tuning in to the Happy Healthy Caregiver podcast, which is part of the whole care network and the WCN streaming radio channel. If this is your first time listening, welcome. This is a show produced biweekly to help family caregivers infuse self care and caregiving into their lives.

 

Each of our episodes has an accompanying show notes page so that if you want more details about the topics and the products and the stuff that we’re gonna talk about or you wanna see more pictures, you can head over to the website Happy Healthy caregiver. com underneath the podcast menu. Click the image or the episode number for today’s show. We’re also gonna put that show notes, link in whatever podcast platform you’re listening to their episode description, come cruise with me and some of my fellow care advocates in October 210.

 

We’re taking a Norwegian cruise on their aqua ship. We’ve planned a respite filled self care at sea cruise with family caregivers in mind. We’ve tried to remove the barriers. We’re giving you lots of notice. We’re giving you a payment plan and we want you to come and relax and rejuvenate and connect to the caregiving community and we want you to leave with that lifeline of support. Learn more about this fabulous opportunity at Bit dot Lee forward slash HHC self care cruise. By the way, if you’re a business that you want to look to become a sponsor in some way for some kind of moment.

 

Even on this self care cruise, just reach out to me and I can share which opportunities remain. 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 251 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 that R PV panel at Rare patient voice. com/happy, healthy caregiver. I read a great book. It’s called Romantic Comedy by Curtis Sittenfeld. If you want to explore what a budding relationship could look like on a fictional Saturday Night live comedy show between a writer and maybe one of their highlighted guests. Well, it sounded really interesting to me. So I let this book Suck me in reading. This was like being behind the scenes of SNL and what I liked that it wasn’t a typical rom com story where you really got to learn vulnerable things about the main characters and not just what they wanted the outside world to know.

 

This is also the first fiction story that I’ve read that takes place a chunk of the time during the pandemic, we just lived it. But it seems so long ago in some ways when reading this, the book is structured. Interestingly, the middle email section really just read so fast. I don’t go in with deep expectations on this book and I don’t want you to either just enjoy this modern day type of romance. This was also by way, I Reese book club pick. Those are usually a good bet for me.

 

I’ll link to it in the show notes. Favorite thing that I want to talk about is packing cubes. I was skeptical but I was influenced frankly by my daughter, Natalie. It felt like it made sense when we went on our trip to Costa Rica, this past May as we moved around to five different hotels during our 267 days there. So if you like organization or organized chaos, I think you’re going to find that these are going to be a game changer. Once I started dirty those travel clothes, I was like sweating through them in Costa Rica.

 

I used one of those packing cubes to separate my dirty laundry. And when I got back from the trip, I just washed the cubes and now they’re ready and they’re waiting for me to go on that next trip as a caregiver related product though. I think that these packing cubes would have worked great in my mom’s various tote bags with all of her care and personal items too. I purposely picked a bright color that was bright and different from my luggage so that the pieces really stood out. And I think it is a fun opportunity to just pick a fun and wild color or pattern as nobody’s gonna really see this. But you, I’ll link to it in the show notes page.

 

Let’s meet today’s caregiver in the spotlight. Sabrina Ortolano has been a caregiver for her wife Cindy since 213 when Cindy was diagnosed with a rare form of brain cancer in this episode of the Happy Healthy Caregiver podcast. Sabrina and I talk about her identity crisis that sprouted from caregiving, the importance of body work, fundraising for brain surgery, asking for the right help and managing judgment from others and that unsolicited advice. Enjoy the show.

 

Hi, Sabrina. Welcome to the Happy Healthy Caregiver Podcast. Hi, Elizabeth. I’m happy to be here today. Thank you for having me. Yeah. Well, we always kick off the show with a little bit of like good stuff. Uh, you know, we’ll talk about a lot of heavy stuff. I like to always kind of kick off the show on a positive note. So these are some things that I that have spoken to me over the years that I’ve collected in the happy healthy caregiver jar. And I wanted to get your thoughts on this one, Sabrina.

 

It says sometimes good things fall apart so better things can fall together. And Marilyn Monroe said that so sometimes good things fall apart, so better things can fall together. Oh, that it’s, you know, it’s funny. That’s, that is. So, yeah, that, that’s, that’s a, that’s a serious caregiver quote there. Well, you don’t know, sometimes like you’re living in the mess and you’re trying to, like, navigate through the murky this and you’re like, why is this happening to me or it happening to us? And it’s not, I think until hindsight later that you’re like, oh, there’s, it wasn’t all bad. Yeah.

 

So, well, and also, you know, it’s, I think about, like, with things like that, I think about like, I, I do well, I’m not doing it now but I for, for a long time in my life, I did a lot of gardening and I think about like compost. Like, you know, like some of the best things you could like some of the best things you eat come from, from, from the things that have that you thought were really good that you forgot about in the fridge that you had to compost because you didn’t want to waste it and it fed all of the things that are beautiful today and it smelled disgusting in the process.

 

Yeah, that’s so true. I love that. I love that, that visual I think is, is important because I can and, and caregiving kind of is like that and I feel like the diamonds are, are there, we look for them and extract them. And I’d love to, for you to share Sabrina a little bit about your Caregiving story. Like share a summary of what it’s been like for you as a care partner. Well, I’ll go a little bit before so I can kind of set the scene for it.

 

But really quick in 290 I started a bath and body care company with a friend of mine and we were, I mean, it, it blew up like we did not expect it to do what it did. It went from like, oh, here’s a little project in our garage to, I live in this, in my business and I almost never see my wife and, like, we’re in every state in the country and exporting to five countries and everything’s made by hand. It’s, it was insane and it was good problems. Yeah.

 

But I was also totally unprepared for how it, like, took me out of my life and my relationship and this was supposed to be like a side hobby, side hustle thing that just took over. So, what happened in 2100 is I, you know, Christmas season starting October, I would just be living at my business because, like, we had 103 hour shifts and I managed everything. So there’d be sometimes, of course, all the holidays which are the fun times to see people where I wouldn’t see her sometimes for weeks at a time.

 

And so it was really hard and really shocking to go from that style of life to, you know, I’ve been having this, like, thing that I think might be an ear infection since November. I’ve had a little bit of like a ringing in my ear problem. Like, let’s, you know, we’re, and we’re like, we’re wellness practitioners, we’re massage therapists. Right? Like, I didn’t plan on going to make soap for my living. So, like, we, we go to our acupuncturists, we take the herbs, we do all the things we do, all the stuff that we do and it’s not getting better, it’s not getting better and, and I finally check in with her again after like coming off my holiday season and realize she’s had this issue all through the holidays while I’ve been gone and, and I’m like, ok, so we need to really get that looked at that’s way too long.

 

So I take her to a GP and he’s like, yeah, it’s been a long time. We’ll do a couple of things like, you know, just rule some stuff out and, but I want you to go get a, get an MRI just to be sure. Right. Just because, you know, it, it is a long time and I wanna rule out a neurologic stuff and I cannot tell you how terrifying it is to have the MRI Tech come out of there and go with the disc, go, you need to hand deliver this.

 

Now call your doctor like really like RS it escalated quickly. Yeah, we thought it was an ear infection. No, it was a massive brain tumor that was sitting on the nerve in her ear. So the, the ear, the ear stuff never went away. She has vertigo, it just never went away. But we went from, I am 210% committed to making this business work so we can get it to the point where we can sell it. And I’ve got a few years left on that project to, I’m now 220% committed to raising money to pay for brain surgery because we of course, had catastrophic insurance because we had been healthy our entire lives and never had any, like, never ever had any need to go to a regular doctor.

 

You know, it’s a complete shift in perspective and all we did. You know, and I had, I between myself and like our group of friends, we had, we had to raise 2100 and $60,000 in two weeks because we, our insurance did not cover the brain surgery. What’s the point of having catastrophic insurance? If it doesn’t cover a catastrophe, wanted to go to a hospital where they didn’t have a doctor who’d done it recently. Oh, we could do that. And I feel like you shouldn’t bargain shop for brain surgeons now.

 

You probably shouldn’t do that. I’m like, I feel like when you’re messing around in your brain, you should, you should know what you’re doing. So we, so we found a surgeon that was competent for doing that. I’m glad we did that. She was amazing. The, the brain surgery went really well. It was, I, I was still in denial about the idea that it was cancer. I was hoping that it was just going to be something that was like, maybe this is just a weird slow growing anomaly thing that we just didn’t know anything about.

 

And then we went right into ok, so we have to do really serious aggressive treatment because my wife is a delicate flower who does whatever she wants. What are you if she’s the delicate flower? What are you? Sabrina? II, I think, I, you know, I’m, I’m a Leo. I think I’m probably the son that helps her grow that way. Yeah. Good God. She’s like, she, she made her own special type of cancer. They’re still studying her. Oh, wow. 10 years. It’s been 10 years. Wow. She’s not officially in remission because she, they couldn’t remove all of the tumor.

 

So they will be watching and studying her. And also because she regrew some, they were benign tumors. She grew some new nerve tumors which is common with radiation. Their secondary secondary tumors after seven years or so after radiation are really common. But she grew, of course something they were not looking for and did not expect and missed the first couple of scans because they were like at the very, very bottom of her spine beyond where it’s normal for them to grow. She just does her own thing.

 

She’s very she’s, she, she’s gonna do it the way she was to do it. So, they removed the tumor. We did radiation. She reacted very poorly to radiation because she’s a delicate little pansy. She must not mind you calling her a big pansy tattoo because there you go. Yeah. No, she, she knows she’s like, she’s like, yes. Ok. She’s, she’s loud and she’s Italian and she seems like she would be, like, rough and dumble about everything. But she’s the most delicate pansy in the world. So, so no, she’s fine with that.

 

She knows like she, she, she is very, very delicate, like a normal dose of medication is often too much for her, a normal dose of radiation. The, the normal lowest end of treatment protocol nearly killed her for the radiation. I finally had to like she was, I was fairly certain she was dying when I signed an A MA to take her home. I was like, she’s not gonna die in the hospital. This is, we can’t continue doing this. I’m just gonna take her home. We’re, we’re done.

 

It was really bad. She went from like walking into radiation with a whole group of people who were doing a similar protocol and she’s the only one who was being wheeled in a hospital bed within a couple of weeks. How does that change your role as a care partner? Like, you know, her, you know, you’ve got the tattoo. Like, what are the how do you explain that to people that you like when you’re advocating? Well, you know, it’s, it’s really America is such a weird thing because for profit medicine and this is, this is like, I know this is like a, it’s a challenging road to navigate because I feel like people who go into medicine generally go into medicine because they want to help people and they want to heal people.

 

And the problem with for profit medicine is that decisions are made based on what you know about the, the financial results. And it’s all about avoiding being sued. And because she’s so delicate, the the treatment parameters are defined on, on the, on the norm, not on the, the ends of the bell curve. And it means that my, her doctors were really like, hobbled in being able to alter it. They did the least they could do and it was still way too much and they couldn’t say this is not a good idea because you have to do the standard of care or you put yourself at risk for, for being sued.

 

And so they’re in a position of, you know, we had these kind of weird coded conversations of like she’s really not reacting well to this. And they can’t say if I had the room, I would, I would cut this or we would do less or we would space it out longer because that we’re doing that we’re doing that. There’s a standard of care. That is if you be, if you take us to court because she died, if we did the standard of care, even if it was the, the radiation that killed her, we are because we follow, we follow the standard of care.

 

And so there’s, there’s not the freedom with the doctors to say this particular patient doesn’t meet the parameters for standard of care. And it’s, it means that these, these people who, I mean, our doctors are amazing. They’re beautiful people. They have, they’ve stuck with us and been with us through all of this and they’re, they have done their very best to help us navigate everything. I don’t, I feel like we made some really good choices with our care providers. It’s just that the system that we’re in it hobbles everyone in the, in the care. Right. Right.

 

And you’re also like, I feel like you’ve got a little bit with your massage therapy and things like that and love of nature and like a little bit of a holistic approach to things. So how did you all balance that? Like, oh, no, we’ve got a brain tumor that can’t be that that needs beyond this. But like you’re way out of your comfort zone and that was a really hard process, especially, I don’t know, I grew up in a, my family has a long history of cancer.

 

Ok. So I, I really, if I’m being completely honest, I thought I was going to be the person who ended up with cancer of some kind because everybody in my family has cancer of some kind. Right. It’s just the thing, like, I, I started my colonoscopies really young because I’m like, colon cancer has gotten most of the women in my family is the age. We’re not going to do that. Right. So, I have a, I have a balance with the, like western and like the holistic concepts.

 

I feel like if my, if my arm is broken, I want the Western medicine to set it, but I’m gonna do all the things that will help it heal faster, right? That’s my, that’s my approach in general. So we try to stay really balanced with it. But God, our community had such a hard time in a lot of ways. Like we had a lot of people who you really see the disconnect in, in particular, in the US, the disconnect between the idea of aging and dying, the disconnect and the avoidance of illness in our culture.

 

And the the there’s this, there’s this really weird thing in American culture, in particular where we really try to pretend if we do all the right things, you’ll never get sick. And it’s this magical thinking, right? Like our systems are built to break down, eventually, we’re not gonna live forever. We can do as much as we can do to do all the right things and you can still have a problem. Right. Right. It’s not, there’s not a magical miracle thing. Like, I, I know I have, I have some friends who in the last few months have passed away, they randomly had strokes and it’s, they’re, you know, outside nature, hiking, healthy, eating all the right things, doing all the right things.

 

It was their time and, and I, I grew up in a, in a, in a large family that had a lot of people who were aging when I was very young. So the idea of dying is well, it, it has all the normal like terrifying. Like I don’t wanna do that things, but I know I’m gonna have to, it’s not outside my experience. And so I was really shocked at the lesson of, wow, there’s some crazy denial and in particular in the wellness industry and our culture around like, no, if you just do this magical thing, you won’t, you won’t ever have to get sick.

 

Like no, like if we get sick, the goal is to like, have the best you can mitigate. Maybe you can maybe be a person who’s going to bounce back, hopefully, you know. But yeah, you can, but also that, that becomes ablest, right? Because then it’s that, that it’s we are blaming the person who’s sick because they didn’t do the right thing. I’m, I don’t have that experience. So you must have done something wrong. It’s, you know, it, it becomes this really like that was a really interesting experience for us because, you know, you never, never go back to being completely normal after having a massive brain tumor removed from your head, there is always going to be stuff she is going to deal with.

 

There is always going to be things we have to mitigate. There is always going to be some form of caregiving that has to happen in our life. This is just our life is completely and profoundly changed and that is what it is. You know, I was thinking about it today as like on the way, on the way to work. It’s like we had, there’s so many people who thought we would just be done with it like she’d be over it. It’s been 10 years. She should be done, right?

 

Like people think that way about grief too. It’s like, no, you just kind of figure out how to like how it’s a part of you and how you can navigate it. And yeah. Yeah. It doesn’t, it doesn’t go away. It’s just now our life is different than it was before this happened, right? Like now we turned a page and this is, we’re, we’re in this part of the book now. It doesn’t, it doesn’t change. And you know, we had some, I, you know, I love, I love our, I love our people, but we had some crazy like, no, you need to escape the hospital and go do this thing and I’ll bring you this crystal or I’ll bring you this.

 

I’m like, stop calling me like, do you really think that I didn’t think of all the things or try all the things or do all the research? And we didn’t do all of the things. This is a rapidly progressing situation and a lot of holistic treatments and support, take lots of time to be effective and we do not have time, right. Time and time, money, all of those things and unsolicited advice is, is a lot, it’s a lot like was there like a phrase that you said was there?

 

Like I, you know what I, I finally, I’m like, I, I was, I was kind of tapped out on everything. I, I, what I actually did was I stopped answering the phone and III I allocate, I dedicated a person to be my point person for calls. I would just text the phone number to them and then they would hook them into our Facebook group. So we set up a family Facebook group that was private and all updates, comments and information went through there and I just stopped answering the phone.

 

I did not have the emotional stamina to deal with other people’s processing their experience of my partner’s illness, right? It’s good for you for setting the bo like realizing that it was affecting you and setting a boundary and a process to manage it. Funny is like I was sitting there with my wife. She’s like, she, she’s just had brain, brain cancer or brain, a brain tumor removal was like, shortly after the, after the surgery and she’s really loaded because they gave her a lot of pain medications.

 

So, and I’m like, so frustrating. She’s like, honey, what’s going on? And I’m like, I’m about to set all of our relationships on fire. You and me on an island. Hope you’re ready for it. She’s like, maybe let’s not do that. Can we find a solution? I’m like, ok, I will call our friends. I call like our, our core support people and see if they have any ideas. So, you know, that was, that was a great solution. I mean, Facebook isn’t great for everyone, especially now. I mean, it’s been 10 years, right?

 

But, but the, the having a private free online group where I could post, there was a story feed. I would put pictures whenever we felt up to it. I would post pictures and updates and, and you can read the comments and stuff if you wanted to or just completely not or not. And there’s also a site just to mention for those that are listening. Caring bridge. org is a nonprofit that is very, you might not have known about it. I didn’t, I didn’t love the way it’s interaction, but I haven’t looked at it in 203 years. Yeah.

 

And Facebook is definitely like, people know Facebook, you know, for the most part. But I, I like that you did a private group because sometimes I think, you know, you can put it on your regular news feed and it’s like, it’s a lot, it’s a lot for, like, you know, the people who aren’t in your inner circle. Um, and they might miss something. So you, you, you know, you talk about how Cindy is a delicate pansy. Um And that, you know, even when you have the majority of the responsibilities, you wanted to support her independence at the various stages, like, what did, what did that look like?

 

I’m curious. So like currently she is, you know, she’s been teaching at the school that we, we purchased in September since 1995. It’s a massage and, and there, there’s a lot of like complex things to teach and a lot of theories and ways we approach things and it’s, you know, I have these moments of being like when she’s having a bad day with her vertigo, I have moments of being like, terrified to leave her alone, you know, just, just because I’m like, ok, she’s gotta go out and be a grown up and be an adult human who does not have me hovering like she’s got, she’s gotta go teach her class and do the thing, right?

 

And part of the reason that we took over the school was because this has been her home and her experience and identity for decades. And it’s to some extent. This is where she, she feels the most herself doing body work and teaching body work is the thing that she feels the most herself. And you know, the thing that’s interesting about it too is like integrating movement and touch with, with um the things that she’s teaching has helped her recover memory stuff better than a lot of the other things like having a multi sensory experience makes sense.

 

I mean, hand eye coordinations like all those things and aromatherapy it makes, yeah, it’s like, it’s part of her therapy and her and her career and I’m like, ok, this is, this is great. We’ll, we’ll continue to do that. But it’s also like, I, I have such a hard time. Like I had to teach her how to walk again. Like we had to get back like through that. Like she couldn’t walk for a while. She was in bed for two years. Like the whole thing like letting her go off into the world.

 

Like the first time she drove somewhere, I was like, don’t panic your baby bird leaving the nest. Like, and you know, you’re obviously this is this when she got a diagnosis, you got a diagnosis. I say like you’re her person, like her, her lifeline in so many ways. Like where did you find support Sabrina for you? You know, it’s funny, I have, I have a couple of really, like, I have a couple of friends that really stuck through and, and we were a part of this with, with me, like they took point on, on navigating our fundraising and doing all of these different things and coordinating people and like helping me just do things and then her, you know, her, her brother-in-law or my brother-in-law, her brother, he’s a, he’s a nurse and he, like, whenever he and his partner could come here and show up, they would, they would fly out and, and stay for a while because they’re in Massachusetts.

 

We’re in, we’re in Los Angeles. So, you know, when he had a break or his partner had a break because his partner was a teacher at the time that he would take, when he had a school break, he come out and just help us so we could get a, get a break. And she had a few instances where she was, was having um vaso bal synco. So she was, she was collapsing, which is terrifying. Yes. I, I witnessed a syncope episode one time and it’s frightening, you know, and now every time that person coughs, I’m like, oh, no, they’re gonna Right. Yeah.

 

If you don’t know what that is, it basically means they pass out, right? And they like, something happened, something profoundly like that. She’s, she’s used to me like talking, talking about all the stuff, but like she was, she was going to the bathroom and it was like she fell off the toilet passed out because the pre the pressure of just and this is one of the things of like your body, your body changes pressure when it, when it focuses on moving blood. So she her, her blood pressure was so completely deregulated because of the way the radiation affected her brain stem that even just going to the bathroom was dangerous.

 

And so there was a point where like, I wasn’t sleeping and all of a whole bunch of our friends were like, I will take Tuesdays, I’m gonna come and I will sit with you. I will be there overnight. So there will be another person there so you could sleep. Yeah, there’s like PTSD. Even where you’re like, you, you just something triggers that um I, I’m curious too, like backing up to the fundraising stuff because like, I, that is, I’m sure something that people have to, to, to deal with.

 

Like, what did, what did you all find successful in raising your money? So one of the things that we did, we had, we had a massive event within the, like she had just had her surgery. So it was within the month of, of being diagnosed. We have, I mean, we, we, we have a lot of creative friends. We live in an artist colony and you know, I’m, I’m a, I’m a, I’m a creative in general. I’m a painter and sculptor. But if I was doing my soap company at the time, so all of my staff at the soap company, everyone that we, that our community basically, there was everyone put a big call out for donations.

 

And we did a massive um silent auction that was done all hosted online. And then, and then we did an event that was like all the silent auction items were at the event. So one of our neighbors donated their um loft space for us to do that in another neighbor donated their taco truck to feed everyone beautiful. And then a bunch of our musician friends came and performed and everybody just, it was open to everyone in the community. So everybody just, and they, they invited all their friends, their friends invited their friends.

 

We had several 100 people show up, which was amazing and we sold just tons of like, it was really beautiful paintings and stuff that, that showed up. It was, it was, it was really a little overwhelming and, and a lot to process emotionally. I was really, really glad that my friends were heading it because I did not have the like, again, it’s like, I only have so much emotional capacity. Yes. It’s like then this is happening. It’s like you’ve, you’re just coping with the grief of like, you know, the the and also the good things are draining, you know, and that was, that was the thing where I was like, OK, so I know I should be really happy and excited and I should socialize but I, I can’t, I can’t, I’m starting to have an anxiety attack.

 

I can’t with anymore. So, like I tried to, I talked to, you know, the people that were organizing and I’m like, I don’t know if we can stay for more than, like, 45 minutes. I know it’s a six hour day, but we don’t have it. Yeah. Good. So, I’m glad that you said something. Um, and I’m glad that they, they, they showed up for you, you know, your community. Amazing. And you know, your job and Cindy’s job too is like teaching these massage therapy students how to best care and hold space for people who are their clients frankly, that could be experiencing similar things or chronic illness or major life transitions and milestones.

 

Like what are, how has this informed, how you educate your, you know, is that I think that’s my favorite thing about the gift that came out of us doing that and going through that like yesterday, I had a conversation with one of my students. So she graduated years ago and she called me and she’s like, ok, so I have this client who, you know, she fell and hit her head yesterday and I’m like, ok, so, you know, healthy, not healthy, what’s going on. And we, we went through this whole conversation and she’s like, well, you know, she has this, it’s, it, she has a genetic disorder that’s like a long term, progressive, slow decline or she has a muscle wasting issue and, and I’m like, ok, so falls are going to be part of her life.

 

So why don’t you find a strategy for how you’re going to going to work with her? Like, let’s talk this through and let’s find strategy because you don’t want her to feel like she can’t receive this care she desperately needs because she’ll stop telling you when she fell. Yeah. And it could make her confident that like, hey, this is gonna happen. Let’s figure out how to mitigate it and exactly the part of her life. So these are the things that are high risk. If you have had an injury, when you have a chronic stuff, these are the, these are the massage tools you use to allow them to still have touch because when you have chronic illness, a lot of the time you stop being a person, you’re a patient and being touched in a way that is about you feeling good in your body is so rare.

 

When you have something chronic, it is so precious that you know, the things that are high risk with that. Like there’s a, there’s a risk of spreading clots if you have an injury, right? So we don’t want anyone to stroke out. So we change the tools we use, we do different things, we don’t do anything that’s gonna spread, move fluid, right? Like what would you use? I’m just curious compressions, stretching and jostling the bodies, you know, doing things that are rather than big flushing strokes because that moves fluid.

 

We, we change our approach and how we’re handling that. We’re, we’re gonna, we’ll do a little mild facial work, which means we’re stretching the fascia, try and address what the complaints are, but also just being with the person in a way that’s about them, feeling good in their body is such a gift when you have a chronic issue that it’s, it really affects your mental health. If you don’t get those things, when you’re looking forward to it. Interesting, if people like they’re not masseuse or massage therapists, like what, what are some things that maybe we could do at home to kind of bring some of those tools in for ourselves as caregivers or for, for our care partners.

 

You know, one of the things that I think is important first is always the idea of consent and touch and having, especially when you’re, you, you have an illness because you feel like in a lot of ways you lose the right to say no, I don’t want to be touched that way because you have to have these things done because you’re, you’re in a medical situation. And like just even even watching some of the things that happened with my wife, like she was really because she teaches this, she’s very particular about like, don’t touch me unless you say hello.

 

You don’t use my name, like my first favorite, you acknowledge that I’m a person here. Like, don’t just come in and start touching me. She was very, very particular about that and she got, you know, and some of the nurses got it and some of them were annoyed because they have very limited time. But she’s like, I wanna see your name. Can you flip over your, your, your, your card? Who are you? You know, don’t, don’t just come in and touch me without like acknowledging I’m a person.

 

So the idea of consent and the setting up a designated time to do a thing. So the idea is like, ok, so we’re gonna shift from the idea of like, OK, I’m, I’m getting you dressed. I’m doing like life things because you get lost in that to, I wanna take some time to, I’m just gonna put my hand on your low back. Like if you’re lying down, I put my hand under your low back, my other hand on your belly and we’re just gonna sit for a little bit and I’m just gonna let the warmth of my hands soften your back and just be with you just as a person.

 

You don’t have to know how to do particular things. It’s just having the intention of touching a person as you’re a person II I care about and I want to be present with that is so valuable and it allows you to slow down and be present with this person that you are, you’ve committed to care for. Right. Right. Especially because you’re, you’re, you have a, you know, relationship. How is it, how did it change the, you know, your partner or your relationship with your, with your wife?

 

Like, what caregiving does become sometimes so transactional, like you’re doing these things, what did you do to kind of be intentional about maintaining that relationship outside of it? I think that’s been one of the hardest parts about going through this. And I know like I’ve talked to other caregivers, it’s a similar thing is like, you know, she and I had a conversation a little while ago about I need, there are certain things because she’s, she’s better. She has short term memory loss from a lot of it.

 

Um So, you know, we work on strategies for her to be able to be as independent as possible without me having to worry about stuff. And I have to intentionally let go and let her be an adult human who makes mistakes or doesn’t. And I’m not responsible for all of those things because she is capable in, in many ways and some days less capable than others. But it’s, you know, this is, this is being an adult human. Yeah, it’s gonna be hard. It’s easier said than done even, you know, caring for parents and things like watching people do make different choices, navigate things differently.

 

It’s um it’s hard and you know, it’s been, it’s been 10 years, you know, since all this is what happened for you, Sabrina. Like, how, how have you, you know, did you experience caregiver burnout? Oh, yeah. II, I still fight with that. Like, that’s a hard thing. Yeah. Especially, especially what were some of the signs for you that you were, like, oh, I’m not Sabrina like she used to be, you know, especially because, um, like, lately I’m, I’m noticing this a lot lately as we’re looking at, you know, shifting how we go about living our life.

 

Like before all this happened, part of the reason we moved into the loft win is because there was a great big garden space. We’re, we’re living downtown L A and there’s a massive garden space. It was awesome. So I spent multiple years like setting that up and I had a whole bunch of raised beds and I had chickens and I had this whole thing and this was like, this is a key part of like my identity and I’m at the point where I’m like, I really wanna not do things, you know, I wanna, I wanna downsize, I wanna move into a smaller place.

 

I want everything to be like, I wanna be able to clean my entire house in half a day and like really clean it. I don’t want this massive loft anymore. Like the idea of the of like the things that were so key to my identity I’m an artist. I’m a, you know, an urban farmer. I’m all of these things, those, those things are, I’m choosing ease in my life because my partner and our relationship and what we make together is more important to me than, than those things that were part of my identity. Right?

 

But that has been a really hard process to work through, you know, and, and this is, this is also a part, it’s part of aging too, you know, I mean, I’m 51 this year and I’m like, ok, I had to have my knee replaced two years ago. It was amazing to have her have an opportunity to care for me. Yeah. You know, you do. Great. Ok, great. Well, you’ve showed her how it’s done for many, many years. Well, we happen to have all of the, the medical equipment already.

 

So we go, we’ve got all the accessories but, but she did, she did an amazing job, you know, and she was so good with me and like our, you know, our friends stepped in and helped her and help take care of things and stuff, you know, and the things that she couldn’t do I could take care of. But, you know, realizing my priorities have shifted and part of my priorities shifting are because I’m, you know, I’m a little fried frankly from, from having to manage our life to the extent that I do.

 

And I’m back to work this caregiving is not my full time job. You know, it’s been the last five years or so. I’m full time work. We went, you know, we went through a pandemic and now we bought this company and we are, I am full time, you know, 67, sometimes more days a week. Yeah. Working caregiver like that adds another whole layer of things which, you know, I don’t, for me it was a little bit of a, I knew how to do that. Like, you know, it’s, it’s a little bit of a like, oh, I know how to do this.

 

It’s, it’s, you can kind of separate it in the box and I totally get what you’re saying about the identity shifting. I mean, I just craved less to take care of like I want less. Like how can I simplify my life, my mantra for the last few months? I’m like, I just, I can’t, I don’t have room for that. No, whatever it is. I don’t need it, you know, like I’m purging and selling things right now because I’m like, I wanna, I wanna, I wanna reconsider where we live.

 

I wanna reconsider everything I want what it, what can be the least amount of effort on everything because I have to put energy here. This gets the, this is the priority everything else gets, get, gets shunted off. I’m done. Right. Right. And that was, that’s been a really interesting personality change. But I mean, we went through, I think at that probably the eight year mark. I was like, you know, I had a really big identity crisis around that because I was like, you know, what am I doing?

 

Where is my life? Like, I, you know, I’ve, I’ve spent my entire life on the, with the idea of like, I wanna be a working artist. I want all of these things. And I’m like, I our life and the things that are key to our survival, take up so much more energy than someone who has, you know, is, is two partners who are healthy. So I need to prioritize like first we have to survive and function and then keep the lights on. I call it. We’re just gonna keep the lights on.

 

Like, you know, we just want to, at least I want to eat. I want to know we can take care of our basics and, and I wanna not be resentful because there is so much to care for that. Like washing the dishes feels like too much. Right. Right. So what, how can I get to the point where dealing with our basic life is not so draining that I can’t function. I realized I was like, starting to dislike our, like, we’ve lived in our loft for 13 years. I love it.

 

It’s, it’s beautiful. We’ve always said like, we just want to live here till we die. We love this place so much. It’s, it’s, we love the community. We love the area. It’s amazing. But I realized, like, I can’t keep up with caring for it. Right. It’s, it’s huge, you know, and, and we are no longer as active in our massage businesses as we were, we were looking at creating a wellness center over across town. And, you know, I had the, there, there are a few days where, like she fell, you know, she’s discovered ago, she falls and in L A, like if you’re on one side of town and the persons on the other side of town, that’s like a sometimes a 90 minute drive to get there.

 

And I might, my, my nervous system can’t handle the stress of like, do I need to get her to the hospital that is now on the side of town I’m on right now that she’s not right. I mean, I think especially because you were always like, for caregivers are always kind of close to that crisis. Like you’d never really fully recover. And so it’s just like you’re living in this, always on state where you just never, you’re just kind of waiting for the other shoe to drop in a lot of ways.

 

Um That’s, it’s very real like, what would you tell somebody, Sabrina who’s like back where you were, you know, two years in one year in and you’re, and now you’re the seasoned, you know, caregiver of somebody who still needs care. Um But you have kind of learned a lot in these, in this time. Like, what would you pass on to that person? Um, the biggest, I think the biggest thing honestly is everything you’re feeling is real. You know, and you feel absolutely everything you can feel, you’re gonna feel all of it all at the same time some days and, and you just have, do you have to survive from day to day?

 

And I just put this on my wall here the other day. I’m like, you have survived 100% of your worst days. Yes. Yeah. Good job. Yeah, I’ve survived 100% of my very worst days and some days survival is the best you can ask for. You get up and do it again tomorrow. You know, and all of the little things that you thought were important are not as important as surviving to the next day. Hm. So, just let it go. Doesn’t matter if your floors are dirty or your dishes aren’t done or there’s no, your laundry is not done.

 

You know, the, the, did you, did you make it through the day? And, you know, it’s funny because it’s like with, I was just telling one of my students about this the other day. We have this moment where, like, I refuse to judge whatever it is someone’s doing to get through being a caregiver. Like there was a period of time because of the way that my wife’s capacity to taste was affected by the radiation that, like, the only thing she would or could eat was a subway veggie sandwich of very specific, very specific things.

 

Very specific bread. But the only thing she would eat and she was eating so rarely that I was just so excited that she would put something in her mouth. I’m like, I don’t want to hear about it. I don’t care if it’s GMO, whatever or whatever. I’m like, I don’t care. Yeah. You know, we’re, we’re just, we’re gonna, we’re, there’s food in her mouth and that’s, that’s what’s important today. Tomorrow we can figure out if we’re making her homemade bone broth. Right? Like, yeah, like, you know, I, because I was, I was that person.

 

I’m like, I’m urban farming and making bone bra, the blah, blah, blah, blah and doing all those things and I’m like, I give up like, what’s most important is there’s something in her body and we are surviving till tomorrow and tomorrow we can try something else. If, if that, if we have the capacity, it may not be for several weeks or couple of years, but for right now we have to get to the next day. So I will never judge anyone. Like I’m sorry if you mcdonald’s is the only thing your person is gonna eat like great.

 

Ok. Make it to tomorrow, right? Yeah, I mean that’s a big statement, you know, coming from the, the previous Sabrina to you. Oh God, it was so hard and there was so, there was so much judgment, like, how could you possibly beat her? Something that wasn’t organic? Like, you know, that, that could cause cancer and blah, blah, blah. And I’m like, you know, what will be worse is if she dies because she starves. Yeah, that would suck. Yes. Ok. So, like what’s most important right now is this is the only thing she can stomach or eat or sounds appealing.

 

And I’m, I’m just trying to keep water and anything in her body. We will judge about all of the other stuff later when we can get to the point where she can actually keep something else down. Yeah, same for you too. As a caregiver. You like you, you know, you’re like, listen when you’re tired and you’re like at the end of, you know, at the end of all that, like there’s Yeah, no judgment. Which is why like this podcast only, only spotlights people who are living in the trenches because I don’t want somebody to come on and, and spout something that’s like, no, you haven’t lived it.

 

You Yeah, we don’t have space for you here. Like, don’t, don’t judge like you are surviving and if you make it through today, you have more opportunity to do something else tomorrow, but there’s nothing wrong or bad about what you had to do to survive, you know, and that’s, that’s the biggest thing for me is like, yeah, there’s all of these, like, aspirational things and this stuff. Like, yes, I would love to do yoga every day and I would love to all of these things and I’d love to go back to being the person who lived, grew their own food and made bone broth every day.

 

That would be amazing. I had a lot more time. Yeah. You know, I had a lot more capacity. I had a lot more energy. I was 10 years younger, you know, and I, and there, and there’s all sorts of stuff that like that person would be, would have been horrified when I first started going through all of this, of like, no, I get to the point of such desperation of like, please just eat anything right. You know, and it was like such an exciting moment to see her like just take a bite of something.

 

I was like I sat there crying, I’m like, oh my God, you found something like like that’s that, that’s like I refuse to judge. But yeah, people need to hear that. I mean, I think this will, this is, you know, that some, this message will fall on something that’s probably beating themselves up, you know, for like, yeah, and you, and you just can’t, you have to, you have to make it through when you have more capacity and you have more resource and you have more room and everything. Great.

 

You know, the other thing too is I always tell people who are like, oh, how can I actually help someone? Like my friends who are, like, they’re the first person who’s had a baby in their group. Right? Like, holy cow, like being a newborn parent is like, that’s like going through like the first year of cancer. It just is like, it’s draining, it’s exhausting, it’s all encompassing. There’s a crystal ball like you just on every child is different, you know. So like, even if you have one, you don’t know what, how this one’s going to be.

 

And you know, I’m, I’m a, I’m a birth do list. So I spend a lot of time with people who just have babies. Love that and, and I’m always like, look, if I show up to visit you, like, can I help you do your dishes or can like, can I bring you something? Do you need furniture or whatever? Like our community has a constant rotation of like random furniture. Do you need anything? But like, tell the people in your life if you wanna come visit, I need you to do a load of laundry.

 

I need you to do a load of dishes. I don’t need you to hold my baby because that’s the only thing I can really do right now because I’m in recovery from having a major physical body event. Well said, well said and I need to use your voice to really say what you really, really, really need, it’s hard, it’s hard for people to do that. Um, and yet it’s so necessary because you can’t, your, your life was already full before all of these things and then it’s like you get to decide what’s spilling over the plate, you know, you choose. Yeah.

 

I mean, it’s the same with caregivers. It’s like, it’s so hard to admit you need help because it feels like you don’t have your shit together. It’s how you feel, right? It’s like, oh no, I’m somehow failing at this. No, you’re human and, and we need our community. We need people to show up and say I’m gonna sit next to you so you can sleep. Yeah, we need someone who’s gonna show up and be like, you don’t need to talk to me. I know you’re exhausted. I’m just gonna do your dishes, right?

 

Brought dinner. We don’t, you don’t need to talk to me like that was so soothing to just have another adult person in the house. So I didn’t have to be anxious all the time that if something happened because we live, we live in a weird complex. It’s really marked. If, when I call an ambulance, I had to call the security office also on a different phone and tell them to go find the ambulance and direct them to us because they couldn’t find us. Like the additional stress of like trying to navigate safety stuff is like just so hard. Right?

 

And it’s like the idea of like, no, there’s another adult human that’s going to be here who’s like, I’ve got, you, you, you have a minute to breath, it’s like so powerful and you don’t have to have as much like stressful stuff as what we went through. It’s like you, everyone needs that. Yeah, you lean on someone else and be like, I just need to breathe for a minute because this is crazy and hard. Yeah. And that, that is what self care looks like as caregivers is asking for help.

 

And you mentioned setting boundaries earlier and, and really for anybody but particularly for, for caregivers. I think, you know, people think it’s like exercise and I’m like, no, it’s no, it’s not that it’s, it’s all of that. It’s the fundraising you did for your financial self care. It’s like all of that, all of those pieces together. Um So that you can just have that breathing space of, of what that looks like. So thank you for, for sharing all of that. I would love to get your thoughts on some of the prompts and the and the self care journal.

 

So this is a book that I wrote to help prioritize. I had to learn it for myself and then hopefully, you know, people can try on and see what’s working for them. But I would love what’s a life accomplishment. Sabrina that makes you proud of yourself honestly though. That my relationship has lasted as long as it has. Like, we’re going on 20 years and that feels, that feels really good. You know, like, it’s funny because I always think about all what, what other things are there. But, like, really like that we, we’re, we still like each other. Yeah.

 

It’s easy to say you love someone. But do you like them? I know. We, we, we still really like each other. Like, we like to hang out together and we, like, despite everything that’s been challenging and stuff, like, we still like each other, I think that that’s like the greatest accomplishment. I’ve, I’ve got going nice. Nice. How do you cope with a difficult day now? Um, the, the I’ve survived 100% of my worst day is my mantra. Yeah. And if I need to just stop and, and shut down, then I just do now because I’m, like, pushing myself and trying to, like, I just torture everyone around me when I’m grouchy.

 

Like, why, why, why it helps no one, you know, just, just be like, I’m gonna tap out today. Like, I need to go back to bed also. The, if I hate everyone, I probably need to eat and if I think everyone hates me, I need a nap. Right. Like, that’s, that’s funny because it’s like, that’s a rule for toddlers, right. Where you’re like, oh, do you hate everyone? It’s probably time for it. But it, it works for adults too. That never changes. Right. No, no. Especially been in a relationship a long time with people like you get to know for sure.

 

Um, ok, you couldn’t imagine a world without dot dot dot Something. Um I’m gonna say body work honestly and is body work being more than massager? That same thing, like in my, it’s a, it’s a lot of different, I think we, we, we refer to what we do as body work because there’s a whole bunch of different techniques that we incorporate. Some of it can be like you can be fully clothed and we can compress and stretch and move your body. The idea of um part of the reason I got into massage is because I learned a lot about failure to thrive and failure to thrive really comes from not being touched enough.

 

We have, you know, the chemical response babies have from being held by their parent, the release of Oxytocin with parent and child. That is that mechanism happens for our whole lives. When I got into body work school, I was like for the first time in my life because you know, being a massage school, you get, you get four or five massages a week, which is amazing. Never felt so good. Yeah, but, but what I realized was for the first time in my life, I felt full and I realized I was making emotional decisions from a place of feeling satiated rather than needy.

 

And body work is one of those things that helps people cope with those things. And it, I found that II, I exited unhealthy relationships. I made better emotional decisions. So the more, more consistently I get body work, more resourced I feel. So it’s energizing too. Like it sounds like for, for, for everybody. Ok, because I know you, you love, um, or you, your identity of, of gardening, describe the ingredients in your favorite salad. I like, I love a chunky salad. Like I, I love, like, there, the salads for me are like the, yes, there’s, there’s, there’s mixed greens, but I love garbanzo beans and cannellini beans and chunk, chunky chopped peppers and, um, Persian cucumbers and just all sorts of any sort of vegetable that’s in season that smells really good right now.

 

Green onions and we do a lot of, um, olive oil with a balsamic production like a balsamic glaze and then toss everything in that. I’m, I’m like, I could just sit and eat a whole bowl of that. So I don’t know why everybody’s salad is always better when someone else makes it. I feel like, but make this Italian summer salad. It’s like she just, she’s so funny because she like, holds on to these recipes for like decades and then she busts them out and she’s like last year it was the summer salad.

 

I’m like, babe, you’ve known how to do this all along. She’s like look, I’m playing a long game. I’ve got to keep you interested. Yeah. So, every so often I’m on a bus. Tell something new. Yeah. Keep it fresh and interesting. So good. Like, hers is all like, um, sausages and cheese and peppers and stuff and it was like a chunky hearty because she’s Italian. I love it. Yes, I love it. I’m a better eater than I am a chef. So, um, that’s, nobody’s going to be like, oh, that Elizabeth, she really made something amazing.

 

We work out well because we love to cook. So we love people who like to eat. So that makes us very happy because small. Anything perfect. Perfect. Well, is there anything else Sabrina that you wish that we um talked about? Or do you have any like parting words for people listening? Um, I mean, the, the most, I think the most important thing is to just be gentle with yourself and the people around you. You know, we come up with the idea of, of having a lot of expectations for how we think things should be and they never are, but some days they’re better than they were.

 

Some days they’re worse. But the reality is, is like, life is what happening is happens while you’re laying out your plans and expectations, you know, and being present with where you’re at is what, what helps you find the joy in those days, especially when they’re hard. Yeah. Yeah. Good. Well, said, well, said, how do people stay in touch or learn more about you and the resources, Sabrina, the be, you know, the best way to get in touch with me is our school. So the, the website is IP sb.

 

com and my email is just Sabrina at IP sp.com. Ok. Wonderful. Well, thank you so much for just, you know, sharing your wisdom of what you’ve learned and what you’re still working on and that you necessarily don’t necessarily have it all figured out and that you’re still, you know, trying to give yourself grace and, and hopefully teaching the other people, um you know, in your school, in your community, kind of educate them about caregiving and what that’s really like. So thank you for being you. Thank you for having us here. Take care. You too.

 

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.

 

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