Transformational Trauma and Healing: Caregivers Have Trauma Too

Join me as I speak with Sabrina Ortolano: birth doula, massage therapist, owner of IPSB massage therapy school, and caregiver of her wife Cyndi. Sabrina and Cyndi's journey is unique and can provide new perspective on what it means to be a supportive community. 

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Transcript

0:15 - Unidentified Speaker Welcome Sabrina.

0:16 - Carrie Rickert It is great to have you on the podcast.

0:20 - Sabrina (she/her) Ortolano Okay. Thank you for having me today. I really appreciate it.

0:22 - Unidentified Speaker Absolutely.

0:24 - Carrie Rickert So I am so interested in the topic that we're talking about today, because we are talking about caregiving. And we're kind of talking about how caregiving is its own trauma to navigate, right? So not only are you dealing with the trauma of a loved one, depending on you, but you're also dealing with the loved one's illness. I mean, caregiving is a trauma for people.

0:59 - Multiple Speakers So why don't we start out with your story?

1:02 - Carrie Rickert Let's talk about Cindy's diagnosis and how that has changed your life and your lives together.

1:09 - Sabrina (she/her) Ortolano So in, I'm gonna go back a little further so you can see the contrast. I started a company with a friend in 2009. And by the time we hit around 2013, we had gone from being a little project in my garage to a million plus dollar a year business.

1:29 - Carrie Rickert And it was cool, but also overwhelming.

1:32 - Sabrina (she/her) Ortolano It ate up my life really profoundly. It meant that just to keep up with the demand, I was at work. Sometimes I didn't even see Cindy for a week or two at a time.

1:42 - Unidentified Speaker Okay.

1:44 - Carrie Rickert During the holiday season, I slept on the floor there because there was no way.

1:46 - Sabrina (she/her) Ortolano We did 24-hour shifts and there was no other way I could keep up with the demand. And what that meant was I wasn't paying attention. And it was, this is one of the things that I had such a, I had a ton of guilt around when we first got her diagnosis was like, I was just not even present to what was going on with her. Like I thought she had an ear infection or some sort of cold that just drug on forever.

2:08 - Carrie Rickert And you know, we're massage therapists and hippies.

2:10 - Sabrina (she/her) Ortolano So we, you know, we do all that. We went to the acupuncturist, we do those things. Right.

2:13 - Unidentified Speaker Yeah.

2:15 - Carrie Rickert Like you do, we're wellness practitioners.

2:17 - Sabrina (she/her) Ortolano We both own, we're massage therapists and all these things, right? So when we finally were like, wow, this ear thing has been dragging on for a really long time. Maybe we should just go to our regular doctor. And we go into a regular doctor and he's like, well, let's, you know, you've done these things, let's do some of these things. So he gave her some antihistamines, which, you know, we know in retrospect helped with the swelling in her brain. So, which is why it seemed like there was some improvement, right?

2:43 - Sabrina (she/her) Ortolano Really high doses of antihistamines worked with some of that. And so that kind of delayed the, you know, what was going on, which was, was great. It was glad that I'm glad that he did that, but like, it was not, it wasn't intentional. Because none of the things that he suggested were working within five days, he's like, let's just rule out the catastrophic thing. Let's go get a brain scan. When we walked out of the MRI facility, the tech looks at us, he's holding a disc and he goes, you need to go call your doctor immediately.

3:18 - Carrie Rickert And we're just like, okay.

3:21 - Sabrina (she/her) Ortolano And we, like, we both, we, we're, you know, we've, I'm, I'm queen of a million jobs, but I have, you know, I w I've been teaching at the school that we bought here this last year for years at that point, like she and I both have. And so we're like, we're really familiar with anatomy. So we're like, we're just going to put that disc in our own computer and go see what's going on.

3:40 - Carrie Rickert And we're like, Oh, yeah, that's not normal.

3:43 - Sabrina (she/her) Ortolano That's a massive, massive tumor in your brain. And we went from, okay, so I'm like, full bore into this business, we hardly see each other, everything is crazy to like, Oh, my God, you have a massive brain tumor. And we've got two weeks to find enough money to cover it. Because all we have is catastrophic insurance. And I personally don't think you should bargain shop for brain surgeons.

4:06 - Carrie Rickert No, no.

4:09 - Sabrina (she/her) Ortolano I've had several, so yeah. No. You are the best.

4:14 - Multiple Speakers We were like, catastrophic insurance. Literally, the doctor was like, well, we don't do very many of these here.

4:19 - Sabrina (she/her) Ortolano And I'm like, that does not instill confidence in the hospital that was covered by what we were doing. And I'm like, great.

4:25 - Carrie Rickert So we had to raise the money to get her surgery.

4:28 - Sabrina (she/her) Ortolano It was two weeks from the initial scan to she's in the hospital having brain surgery. And it was just like, I spent that two weeks, I stopped eating, but also I was stress baking. So my house looked like it was like a little cafe. It was just full of all sorts, like I just, cause I'm like, I have to channel this somewhere and I'm freaking out. And she's, you know, and she went from the first week she was okay, but the second week she was, she went to the point where it had just progressed enough that it caused her, her physical affect to change.

5:00 - Sabrina (she/her) Ortolano So she stopped being able to talk normally and had just grown to the point where it was profoundly affecting her function. And so it was like watching her decline in rapid process was really terrifying. And then doing all the pre-surgery appointments and all these things, it was like super overwhelming and very goal-oriented. So it was really easy to focus on like, these are the things that need to happen, I need to find the money, I need to do the thing, and it's like hyper-focus.

5:27 - Sabrina (she/her) Ortolano But as soon as we got, like we got to have the surgery done and then we're like, okay, so we're going to start doing radiation. And my wife is like, if you ever meet her, she is a person who does everything her own way. She is a delicate flower who responds very differently to every medication and to every treatment. And everything is like very unique. And she is, she's like a six foot tall Italian. And she seems like she's going to be fierce and like rugged through everything, but she's in fact like the most delicate pansy you've ever met.

5:58 - Sabrina (she/her) Ortolano So, so she, she, she made her own type of cancer that they're still studying right now. Like later, 10 they're still watching her because she, she reacted uniquely to everything. And, and so like all of the normal, this is how we do things stuff was, was thrown out the window because she had her own unique response to everything. And so it was just this crazy, sudden, rapid, complete shift of our life, complete shift of goals. I was like, I can't go back to work because I need to be here at the hospital.

6:34 - Sabrina (she/her) Ortolano Because she reacted uniquely to everything. So every time I walked away, something horrible would happen. And I have to be there to advocate. And my business partner was not comfortable with that. And so it took a solid year of legal proceedings to divorce the company. And exit that. And then, you know, three years of me being a full-time caregiver and fundraising and doing side jobs and stuff that I could do out of my house for that whole time. And just crazy. I mean, it's like such a complete life shift, which is just wild, you know, and that going through that process was just a kind of, it was terrifying and traumatizing on every level.

7:17 - Carrie Rickert I'm sure that it was, and I would assume, and perhaps I'm wrong to do so, but I'm wondering what kind of, how easy was it to navigate and be the advocate for your wife and her healthcare as a couple in a same-sex marriage? Is that challenging?

7:46 - Multiple Speakers Well, okay.

7:47 - Sabrina (she/her) Ortolano So we're, we're very, we're lucky in some ways where you're in California. We were going UCLA happened to be the hospital that had the best surgeon and they're very queer friendly. That being said, I had to carry my marriage license with me everywhere. So anytime we checked her into emergency or the hospital or any of those things, I had to prove that I had a right to be there. Once they finally got in, we were frequent flyers enough. I didn't have to do that every time. But there was an initial like, well, who are you?

8:20 - Sabrina (she/her) Ortolano Are you her sister? Are you her blah, blah, blah. And this is the whole conversation. And it was interesting because I had this conversation with my brother. He and his wife, They're so sweet, but it's like it never had occurred to them that I would have to prove my right to be there. And he's like, no one would ever ask me. And I'm like, yeah, because you could go in and say, I'm I'm her husband. And they would just assume your every right to advocate for her and any of those things, especially if she's sitting there.

8:47 - Sabrina (she/her) Ortolano This is my spouse. Right.

8:49 - Carrie Rickert Right.

8:50 - Sabrina (she/her) Ortolano And that's and UCLA is better than most places. And still, I had to bring all of this stuff in. I carried our marriage license and our power of attorney stuff and all of our legal agreements with me out through the whole thing. Because when she had when she collapsed a couple times, we ended up in a different hospital. And I had to prove my right to advocate for her. And it's an additional stress that makes what is already a horrible situation so much worse because you have to prove your right to speak for them.

9:20 - Sabrina (she/her) Ortolano If I had gone in and said, I'm her sister, there would have been less trouble with having those conversations.

9:26 - Carrie Rickert And I wonder if they would have even made you prove it. Nope.

9:30 - Unidentified Speaker Right?

9:30 - Sabrina (she/her) Ortolano Yeah.

9:31 - Carrie Rickert Because I know my, we have a sick family friend right now and she's in the hospital and it was supposed to be a family only. And my mom's like, I just told them I was her sister because, you know, we are not blood related, but we're sisters. And I'm like, yeah, but then I was thinking about this conversation. I was like, I wonder if that is, you know, like even in progressive areas, you still have to explain and prove that you are her spouse. And it's not like you're doing things negatively, right?

10:16 - Carrie Rickert Like you're not advocating for her. So like, wouldn't any medical personnel want someone to advocate for their patient?

10:30 - Sabrina (she/her) Ortolano You would think, because I'm like, I have these moments where I'm like, I don't know about you, but I'm like, I'm looking at, you know, some of the situations that she was in where she had to make me, like we together made major life changing decisions. And like, she is too high and too sick to think through the questions they're asking. I don't know how And I always think of like, oh, the world should be a better place and everybody should have someone to support them in those things.

10:57 - Sabrina (she/her) Ortolano And I'm like, I know that I'm magical thinking that way. Like I wish things were better. But going through what we went through and I'm like, I don't know how someone who doesn't have someone who can be available there all the time, I understand why we have some of the outcomes we do.

11:13 - Carrie Rickert in our medical industry here.

11:15 - Sabrina (she/her) Ortolano I really do, because you're asking someone who is not clear-headed enough to make major life-changing decisions. Like I went to get coffee one day, and because she's such a little, strange, delicate flower who does her own thing, they had started putting her on medications for the side effects because they couldn't get some things managed. And so medications that would not normally be something you put her on because she doesn't have the problem that it's meant for, but the side effect is profound enough that they're looking for that, right?

11:42 - Sabrina (she/her) Ortolano And I go to get coffee. I'm like, we're in the hospital. I go to get coffee because I'm like, I just need some coffee in a minute. And I come back and the entire heart team is there. And they're like, okay, we're going to prep her for a pacemaker. And I'm like, can we wait on that for a minute? Because you just put her on some heart medication for an anti-nausea side effect. Have you reviewed her medication? And also, she has to be in an MRI tube every couple of months for the rest of her life, and you're going to put a piece of metal in her heart?

12:11 - Sabrina (she/her) Ortolano I think that those are, I think that's not, they're like, oh, she's going to have to do MRIs. I'm like, they haven't even really, none of the teams don't talk to each other well.

12:18 - Carrie Rickert Yeah. And they hadn't done a full workup on the, on the medication.

12:21 - Sabrina (she/her) Ortolano And, and it's like, I love teaching hospitals. I think they're brilliant because they're so innovative, but also in every teaching hospital, everyone who's doing their rotations has to get a certain number of procedures done. So they're, they're looking through charts to see if there's anything that they can fulfill that on. So like, it's, it's this weird thing where you're like, okay, well, can I even leave her alone? Can I really go home? I can't go home.

12:44 - Multiple Speakers I'd walk to Target and get new underwear because I'm like, I'm like, I'm not going home to do laundry.

12:49 - Sabrina (she/her) Ortolano I can't, I don't feel comfortable.

12:50 - Carrie Rickert Well, that's interesting because my, my mom, um, when I was in the hospital about 10 years ago and my mom stayed with me for the entire time and she, and But as Cindy is lucky, I was lucky to have somebody who could advocate for me. My mother is a former rehab and ICU nurse.

13:16 - Sabrina (she/her) Ortolano Oh, you are lucky.

13:17 - Carrie Rickert She was she was at least able to speak the language, right. And, you know, it's it's interesting. I know you talk about advocating for humanness. And I'm assuming that that is part of this, you know, broken system that is our medical Well, in regards to humanism, like, so, so Cindy and I are both body workers, right?

13:50 - Sabrina (she/her) Ortolano We, we're our whole, like, and this has been the through line for everything I did. Like even when we did the company that I had, it was all like skincare, things that are like, that we would use in our practices and such. And The thing that I know is human connection is integral to resilience, okay? Being touched in a way that is consent-driven and healthy is integral to alleviating depression and helping you be resilient and heal better. And our systems are not set up for human connection.

14:21 - Sabrina (she/her) Ortolano For one thing, I mean, especially, I mean, look at the pandemic for the last few years. It's like there's so many people coming through everything, it's traumatizing to the caregivers. And, and also like there's just too many patients per nurse for them to even, even have time to stop and say, hello, I know you're a person and I'm going to do a thing to your body.

14:40 - Carrie Rickert Right.

14:40 - Sabrina (she/her) Ortolano Like what I see a lot and like with Cindy in particular, but I have a, I have a lot of clients who have longterm illness or who have some sort of chronic condition and the experience of being a thing that something's done to. As opposed to a person you're asking consent and permission to connect with and do something with as a group thing, where you feel like you have a right to say no about something on your body, right? It's profound. And Cindy, when she was sober and awake enough and her brain was present enough, would stop people and say, I need to at least know your name before you touch my body.

15:20 - Sabrina (she/her) Ortolano Can you turn your card over so I can at least see your name before you start asking me questions? I don't know who you are and why are you doing this? I don't think it's necessarily that there is a negative intent. I think it's a side effect of the system that we have where there's just too much to do in too short a time.

15:41 - Multiple Speakers And also, there's a certain amount of trying to protect yourself from being too connected to people who might not survive. I think it's a natural response on the caregiver's part. Because it's devastating to work in an area where you've got people who are really, really ill.

15:58 - Sabrina (she/her) Ortolano And if you connect very deeply with them, and you lose them, you are grieving constantly.

16:04 - Carrie Rickert Yeah, absolutely. Um, I remember when I, along that same vein, when I went back to the hospital for a checkup, you know, um, we saw some of the nurses in the elevator and they were like, Oh my God, I can't believe it's you. And you look at you, you're doing so well. And, and I'm like, Wow, I don't even remember their names. And that seems kind of extreme. And I'm saying this to my mom and she said, she's like, they have a lot of patients that don't make it. You are in shock trauma. Like your injuries were severe.

16:52 - Carrie Rickert There's really no reason that you did make it other than, you know, their skill and your will. Yeah. So, so yeah, I hear what you're saying. And I also, you know, I think the medical system is set up in such a way that we're so insurance driven. And it and that hampers our medical personnel's ability to do their jobs well. And How I would define doing their jobs well is connecting with their patients. I agree.

17:36 - Sabrina (she/her) Ortolano The other metric I use for that is how flexible is the care that they can give? Because Cindy's very, very unique. She responds differently to almost everything. She's very sensitive. She's a little canary in the coal mine sort of a situation. And so the thing about that is that a lot of the care was significantly too robust for what her system could handle. I signed an AMA to take her out of the hospital eventually, because I was like, if you're going to die, you're going to die at home.

18:08 - Sabrina (she/her) Ortolano Because the radiation treatment was killing her. It was entirely too much for her system. And that's not so for most people. The people that we started the treatment with, they all walked in together and she ended up hospitalized and being rolled into the radiation. And we watched other people get their little sign and congratulations that did the same path.

18:35 - Carrie Rickert You know, and the thing about the insurance drivenness of everything is like, it's liability.

18:40 - Sabrina (she/her) Ortolano So they have a metric of this, this is the standard of care. And if we don't do that, then we could be sued. Even if it kills you. We can say we did all of the things that we were supposed to do.

18:51 - Multiple Speakers So we're no longer liable for that.

18:52 - Carrie Rickert Right.

18:54 - Sabrina (she/her) Ortolano And it takes away common sense. Yeah. And strategic thinking.

19:00 - Carrie Rickert And it's not. And it's like I don't I don't have any grand dancers for how to fix it.

19:04 - Sabrina (she/her) Ortolano I just I just realized I was at a moment there where I'm like, they want to do several more treatments. She can't even sit upright without passing out because of the way the radiation is affecting her. And I just I just looked at her. I'm like, baby, if you're going to die, I'd rather have you do it at home. I don't want you to do that here. And we agreed, I signed the paperwork and I got the transport and took her home. And it was a long, slow road and a lot more advocating. And she always laughs because I'm like, you're my favorite science experiment.

19:37 - Sabrina (she/her) Ortolano I'm like let's let's try eating this let's you know all of the all of the things that becomes like your obsession when you're trying to save someone's life and you know and she's she's alive I feel like those were the best the best choices I could make it's not always true for everyone else but we made the made the decision together that like if she was going to die we don't and we don't she didn't want to die there And I just think it's brutal to think that we were at that point. And I know that through later conversations, I know that her doctors were feeling very hamstrung by the standard of care because she obviously was way too sensitive for the lowest end of the standard of care.

20:17 - Sabrina (she/her) Ortolano And they couldn't make any additional changes because they have to meet their minimums to protect the hospital from liability.

20:28 - Carrie Rickert And it's such a hard place to be in because those things are put into place, right?

20:35 - Multiple Speakers For protection of everyone, right?

20:38 - Carrie Rickert I mean, at least that's what the intention is. And I have a friend who worked in risk management for a long time and she's like, protocols are put in place for a reason and it is to help is to protect both the patients and the medical teams. Yeah, absolutely.

21:02 - Sabrina (she/her) Ortolano And it's like, we're not mad at any of them for any of that. It's just that the system doesn't allow for flexibility in, the response is unhealthy. The response isn't what we expected. It's way beyond the minimums of what we were doing. And if more is better for most people, but not for her, we can't respond in a way that is appropriate to this patient.

21:25 - Carrie Rickert Right, right. So talk to me about how once you guys got home.

21:32 - Sabrina (she/her) Ortolano What did I mean, then you were like, completely responsible. Oh yeah. Community is so important for surviving things like this. It really, really is. And we're so lucky. And I know part of it is because the type of work we do is really about connecting with people. And so we have a really beautiful community. And like one of our friends was, she was the head of a department in the hospital and she's like, you know what, I know you and we need to schedule you to respite care. She's like, I'm sending you someone on Fridays and you are going to leave the house.

22:13 - Carrie Rickert Oh, how wonderful.

22:14 - Sabrina (she/her) Ortolano And so she was just like, you know, four hours a week were the only time I had to myself.

22:20 - Multiple Speakers And she made me promise that I would go do something where I had to shut my phone off and not be accessible to other people.

22:26 - Sabrina (she/her) Ortolano So at the time, the Korean spa that I really liked was like $20 to get into. So I was like, okay, I can go there. And then my phone has to be locked up because it's weird to have your phone in a spa. Right. And, and just like, take a, take a few minutes to just not think. Cause I feel like all I'm doing is thinking constantly obsessing about every little detail and like reading and studying and doing all of these things and like, you know, getting myself planning.

22:54 - Carrie Rickert Right. And, well, and also like an impromptu medical degree, because she reacts so weird to things that I have to be like, okay, so what deficiency could this be?

23:02 - Sabrina (she/her) Ortolano I know the radiation does this and it strips this, like, how can we get that back in her body? And Oh, all of her organs are being weird. She had the worst possible reaction to absolutely everything. They wanted her on really high doses of steroids and she developed really severe Cushing's. It was hard. Every one of her medical providers was like, this is so much harder than we normally see. And, and just so it's like I'm constantly in this like high level of anxiety of like trying to manage like the 24 different teams and 40 something different medications and all of the reactions and track everything.

23:43 - Sabrina (she/her) Ortolano And like my brain just never shut off, you know, and I have, I have ADHD, so that was kind of okay. But eventually everything burns out, right?

23:53 - Unidentified Speaker Right.

23:54 - Carrie Rickert Absolutely.

23:55 - Sabrina (she/her) Ortolano So we had, so I had the four hours a week where we had respite care and, and then it was trying to find like, and one thing that I would always recommend to anyone now, like I do this from the gate is if you have someone who is sick with something like cancer or any sort of like, like potentially catastrophic illness, talk to a palliative care doctor at the beginning. Because the palliative care doctors are about care coordination. I did not find that until after she had been home for a while.

24:18 - Sabrina (she/her) Ortolano And God, it made my life so much easier because his whole thing was, okay, let's see what resources you need. Here's a social worker. We're going to help you coordinate her, her IHSS stuff. Let me review all of her medications. Why is she on this? This is how we weaned it off. The reason she's having this reaction is because these two medications interact with each other. Like he went through everything and he reached out to every single doctor on every single team to be the point person.

24:46 - Sabrina (she/her) Ortolano And that's what palliative care does. And we get told all the time, palliative care is about dying.

24:53 - Carrie Rickert Right. I mean, that's what I thought.

24:57 - Sabrina (she/her) Ortolano No. And that's the thing. It's poor marketing.

25:02 - Carrie Rickert It's really poor marketing.

25:05 - Sabrina (she/her) Ortolano Palliative care is about coordination and quality of life. And it doesn't necessarily have to be, oh, it's the last couple of weeks of your life. They really excel at getting all of the doctor teams to talk to each other. They're amazing. And they have the social workers and all, and they have a beautiful network. It's amazing. That was the best thing that I could have found. And it really helped me figure out what made sense for her to help kind of set a path for that. When you get to the point where they say, okay, well, you're no longer in danger of dying, then the insurance starts to question if palliative care is acceptable, which is why I say ask for it at the beginning, because it's gonna help set you up for better care.

25:47 - Carrie Rickert Right, wow. Yeah. What a, what a wonderful piece of advice. Cause it, that wouldn't have occurred to me.

25:55 - Multiple Speakers Well, and everyone I talked to was like, yeah, no, there's no way I would never do that. Like that's about dying. And I'm like, no, this is about someone who will actually get all of the teams of doctors to talk to each other.

26:04 - Unidentified Speaker Right.

26:06 - Carrie Rickert So amazing. So there's like actually a chance that you will die because people are talking and I think that's another challenge with our medical system is that everybody is so siloed. There isn't a holistic approach in Western medicine at all. Not at all.

26:26 - Sabrina (she/her) Ortolano Every team is like, I work on this one organ and we pretend like it doesn't affect everything else in your system. Right.

26:33 - Carrie Rickert which is so crazy to me, you know, it's just crazy.

26:36 - Sabrina (she/her) Ortolano It's like the heart team saying she needs a pacemaker. And I'm like, or we could take her off of the heart medication. Why don't we try that first? And then we can see if like, if she really, like if the bradycardia is actually a result of the medication, which is, you know, that's what this medication is for. Cause I went through and read all of them and what our medications are for. And I shouldn't be the person doing that.

26:58 - Carrie Rickert No, I mean, it's good that you did as her advocate, but that shouldn't have been a necessary responsibility for you to have.

27:11 - Sabrina (she/her) Ortolano Well, and that's that's what I look at with a lot of I'm lucky and I get that I'm lucky. Okay. I am, I'm a doula. I'm used to advocating and being in a medical setting. I teach pathology. I, there are things like I already had a sense of how some of these things work.

27:31 - Unidentified Speaker Right.

27:32 - Sabrina (she/her) Ortolano So like your mother, I'm like, I have the, I have some of the language and I understand how to advocate and I know that I'm unique in a lot of these situations and it just makes my heart hurt for all of the people who are like in over their head.

27:44 - Unidentified Speaker Absolutely.

27:47 - Multiple Speakers I don't understand that.

27:47 - Sabrina (she/her) Ortolano You struggled, right? Right.

27:49 - Carrie Rickert And if my mom struggled with advocating, how does any regular person off the street Manage that.

28:02 - Sabrina (she/her) Ortolano It's so much. And the system's not set up for educating people who don't have a medical degree.

28:08 - Unidentified Speaker Right.

28:09 - Carrie Rickert You know, so you're making these profound, life-changing decisions with almost no resource.

28:16 - Sabrina (she/her) Ortolano And I don't know, like, I wish I had a solution. Like, this is one of the reasons that I wanted to have these conversations with people. It's like, I wish there was a better solution, right? There has to be some way to make this more accessible and more supported because it shouldn't be this traumatizing. You know, there's, there's, there's a statistic I read recently that I want to say it's like caregivers 23% die before the person they're caring for because of the stress and wear and tear on their bodies.

28:43 - Sabrina (she/her) Ortolano And the way that they, the way that they end up, you know, Oh, I'm the healthy one. So I'm going to just, I'm not going to sleep. I'm not going to do this. I won't eat well. I won't do all those things that like you need to do. And so they end up like in an effort to prop up the person who they're caring for, they end up burning through all their resources, end up in like worse situations.

29:04 - Carrie Rickert And it's just- That is a frightening statistic.

29:09 - Sabrina (she/her) Ortolano It's not sustainable. No. You know?

29:12 - Carrie Rickert No, it certainly isn't. I mean, I know, I mean, just my mother slept in a chair for four months.

29:21 - Sabrina (she/her) Ortolano I didn't sleep for a long time. Yeah.

29:24 - Carrie Rickert And then she and my dad moved in with me and my kids and it was chaos. So, you know, so talk to me about how you and Cindy, how, what impact did this have on your relationship, knowing that Cindy was, so dependent on you as she is fighting for her life.

29:55 - Sabrina (she/her) Ortolano It's a really, it's interesting that the transition that that makes. It's like, we've been talking a lot about this recently, even. We've been together for almost 20 years.

30:04 - Carrie Rickert And 10 years of it has like, it was 10 years ago that she got diagnosed.

30:09 - Sabrina (she/her) Ortolano And so, you know, for a solid, at one point for a solid year, she was, because of the combination of medications before I found the palliative care doctor, she was on antipsychotics and a bunch of things that sedated you to the point where she basically slept for a year.

30:22 - Carrie Rickert She lost the ability to walk.

30:24 - Multiple Speakers There were all of these things that was really, really challenging.

30:27 - Sabrina (she/her) Ortolano And, you know, the conversation of like, that's not her fault. She didn't do anything wrong. It's just where we're at and it is challenging, but also it means that like, as we're navigating and negotiating our lives now that she is much more stable and functional, it's like, you get into habits of doing all the things and not asking for help.

30:50 - Carrie Rickert Right.

30:51 - Sabrina (she/her) Ortolano And it means that I have a really hard time with asking her to help take up the slack or help with things around the house or even just kind of giving in. We bought the school here in the fall and I'm basically running and expanding and fundraising for that. And so it means that I'm not managing the house very well at all, even a little bit. Because there's only so much brain power going on.

31:17 - Carrie Rickert Absolutely.

31:18 - Sabrina (she/her) Ortolano And she's done an extraordinary job of taking up the slack and taking care of the things that I had often been doing. And I'm realizing, oh, I can take a breath and I need to stop obsessing about this is all my responsibility. You know, and when someone has varying levels of capability, it is challenging sometimes to be like, well, can you do this? Or should I just do it? Or I should just do it because you're used to doing it. And then also, you know, the person who has been ill, like, how do you have that conversation of like, okay, are you well enough to do this?

31:49 - Sabrina (she/her) Ortolano Because I need you to do this thing. I'm burnt out. I am tired. I need you to step in and you don't have to do it all, but I need to feel like you're, you know, you're doing a thing.

32:00 - Carrie Rickert How do you figure that out? It's interesting too, because having been on the other side of that, when I was able to do things, right, all I wanted to do was the things. Yeah, you know, like, I, I mean, I remember my parents, I'd be like, you can go home now. And they're like, um, but you don't even have your driver's license, Carrie, because I had a brain injury. So they took away my driver's license until I retested. And I'm like, yeah, but I don't have to go anywhere this weekend. And the kids are with their father.

32:44 - Carrie Rickert You can go home and let me handle myself. Like, I'm fine. I'll be fine. And I think that I mean, I be honest, I've always had trouble asking for help. But since that experience and needing so much help, and having to accept it, which, you know, is painful, when you're an independent person having to accept help, because there is literally no way with, you know, casts on your arms that you can wash your daughter's hair. You know, like once you're able to do those things, the fight to like, no, but I can, I can do it.

33:37 - Carrie Rickert Or, you know, pushing too hard.

33:41 - Multiple Speakers because you want to do it. And so I'm sure it, were there like those kinds of conflicts too?

33:48 - Sabrina (she/her) Ortolano Yeah. You know, and it's funny, cause like Cindy had to, she had to relearn how to walk because you know, she was her, you know, the part of her brain that they removed, the cerebellum affects all of your coordination. And unfortunately the one thing that we hoped would go away, which was the vertigo that came from, came from the nerve, the nerve in her inner ear being pressed on by the tumor, never went away. And I'm like, I'm not sure what kind of neural rehab you did, but like the neural rehab that she got for the vertigo, they were like, well, basically what you need to do is just stress your brain to the point where like you puke.

34:21 - Sabrina (she/her) Ortolano Every day until eventually your brain adapts and will stop being, will process the vertigo. They're like, this is like, I'm summarizing profoundly. Like they said it much more tactfully than that. Right.

34:32 - Multiple Speakers But that's essentially what it comes down to. Like, right.

34:35 - Sabrina (she/her) Ortolano But still like get yourself to the point where you're wildly uncomfortable. We don't have any idea how long it'll take, but eventually your brain will go, well, this stinks. So I'm going to just not do this anymore.

34:45 - Unidentified Speaker Interesting.

34:47 - Sabrina (she/her) Ortolano Like, okay, because the vertigo is just like, they're like, your brain will eventually adapt if you keep doing the PT and do that. But there's no like, it's not like there's a goal marker to say where that is. So it's really hard not to feel like really dejected around like any sort of lack of progress because there's no like, oh, you know, it takes six months and we'll get to that goal. And it, you know, or, you know, there's no way to gauge. They're like, no, we know that it works.

35:11 - Sabrina (she/her) Ortolano Eventually your brain adapts. It's like going from regular glasses to bifocals. Eventually you stop seeing the area that doesn't work.

35:18 - Multiple Speakers Your brain fills it in, right?

35:21 - Sabrina (she/her) Ortolano We know that it's effective. We just don't know how long, especially because you are a unique flower that does their own thing, we don't know how long it's going to take. And it's really dealing with the depression, navigating that around like, this might just be how things are and it stinks.

35:36 - Carrie Rickert Yeah. And like, we don't have a good marker for, for what's productive around that.

35:41 - Sabrina (she/her) Ortolano And then like, you know, because of the vertigo, like she's, she, you know, it took a long time to get to the point where she was walking in and it was like really hard for, it's hard for me to kind of let go and let her do things. Like I am constantly like, I want to walk down and be like, don't fall, don't fall.

35:57 - Multiple Speakers Because she falls, she falls often, you know?

35:59 - Sabrina (she/her) Ortolano And it's like, I have to stop with it, because it's really hard to see someone as a partner, and that if you're like, don't fall, it's like, can I lean on you? Conversation, if I lean on you, are you going to fall over? You want to trust that, and she's very independent, and she always has been. We always laugh because we had, When she was diagnosed, we were having challenges, like a lot of relationships. What we know now is the area of your brain that affects some of your emotional regulation.

36:40 - Sabrina (she/her) Ortolano She's had some emotional regulation challenges, and she was really having a lot of depression around the time that she was diagnosed. I was not responding well because I was just burnt out and trying to bust my butt to make this business happen and do all these things. I was resentful. I remember we had this moment where we sat in the hospital and she looked at me and she's like, you really do love me. You're not going to leave.

37:06 - Carrie Rickert And I'm just like, yeah, no, you're stuck with me.

37:10 - Sabrina (she/her) Ortolano You can't run very fast anymore anyway. So you're not getting anywhere.

37:15 - Multiple Speakers It's us. We're a team.

37:16 - Sabrina (she/her) Ortolano This is happening. We're going to do this. And it was beautiful because we basically did a year's worth of therapy in a few minutes because we got to cut through all the messy stuff.

37:27 - Carrie Rickert But it also means that know, as a, as a, like a partnered situation, we have a lot of interdependent stuff that is sometimes challenging to navigate, you know, in the best of situations. Right. I mean, the, and, and it just, Oh, life can be so hard. Um, and I mean, one thing I learned though, is that, you know, As you said, you got your year's worth of therapy and in a couple of moments. Sometimes these things happen. And you grow so much from them. Yeah.

38:10 - Sabrina (she/her) Ortolano I don't wish her to be sick. I wish that it had never happened. That being said, I feel like we're still together because of some of the things we went through.

38:22 - Multiple Speakers We got through stuff in a way that was so profound and very raw and honest.

38:28 - Sabrina (she/her) Ortolano When you know someone's probably dying, it's easier to be brutally honest about how you feel about stuff and be really work through all your stuff. It was just easier to be like, no, really, you're my person and I want you to know all the things that I feel because it's important that you get all of that. If you're not here tomorrow, I want you to go knowing how loved you are.

38:52 - Carrie Rickert Right, right. Yeah, and I mean, wow, how absolutely profound is that? And I say that about my accident. It sucked. It was terrible.

39:05 - Sabrina (she/her) Ortolano The recovery was awful.

39:08 - Carrie Rickert And also, I wouldn't give it back. Like there's, there's no way because so many things about who I am today are because I got through that.

39:23 - Sabrina (she/her) Ortolano Yeah, right.

39:24 - Carrie Rickert And so it sounds like to me, you're saying that so many wonderful things about your relationship got to where it is now because you went through that.

39:37 - Sabrina (she/her) Ortolano Absolutely. We are, we are, it's, it's, it's been hard and yet like we are better off having gone through things and learning how to lean on each other.

39:48 - Carrie Rickert Yeah. Wow. So what's Cindy's prognosis now?

39:55 - Sabrina (she/her) Ortolano They won't ever give her a urine remission because when they removed the tumor, some of it had grown onto her brainstem and you can't cut into the brainstem because brainstem regulates all of your heart rate and breathing and such. And so it's one of the reasons they irradiated her entire brain and her entire spine. And they're observing her. So we go back, like right now we're on an every six month rotation for MRIs. And part of that, that's shorter than it was. We were kind of edging out to a year, year and a half.

40:29 - Sabrina (she/her) Ortolano Because she developed benign but still problematic nerve tumors in her low back, way below where they expected them to show up. Because you know, secondary cancers come up with radiation all the time. So they monitor you for a period of time, I think it's a seven year monitoring period, because radiation can cause a secondary cancer. And they monitor, especially your full spine, because the cells that drop down in the spinal fluid end up pooling near the bottom of your spine. And so if you're going to have a secondary tumor, oftentimes it's at the bottom of your spine for that.

41:02 - Sabrina (she/her) Ortolano So they were monitoring her there, but below where they usually monitor, she started having, she grew, she grew, what are they called? She'll show schwannoma tumors where it was compressing on the nerves that make her legs work. And that showed up right at the beginning of COVID. So it took almost a year because it wasn't life-threatening. It took almost a year to get the surgery to have that removed, and then it immediately grew back. So we, you know, they're kind of constantly monitoring her still.

41:35 - Sabrina (she/her) Ortolano And it's just the thing, like thankfully they're benign, but the fact that she's growing tumors in places that cause issues, this means that they're going to continue to monitor her indefinitely.

41:46 - Carrie Rickert Right, right. So you bought your massage therapy school and you and Cindy are running it together. So how have you transitioned into that?

42:03 - Sabrina (she/her) Ortolano Well, you know, one of the things, I mean, you have a brain injury or you haven't had a brain injury. So like one of the things that is challenging with that a lot of the time is long and short-term memory stuff can be really challenging. And the thing that Cindy had done most consistently, um, was she's been, been teaching at the massage school since the early nineties. And it's something we both love profoundly. And the thing that we know is for her in particular, incorporating kinesthetic experiences with something that she's doing.

42:34 - Sabrina (she/her) Ortolano So doing something that she's familiar with and using her body to do that. So the line of work we're in is really helpful for her brain function, is really helpful for some of the memory stuff. Like I was noticing over time when we went back to work and started teaching again, then her short-term memory challenges got less profound the more she teaches.

42:54 - Carrie Rickert Okay, that's wonderful.

42:56 - Sabrina (she/her) Ortolano Yeah, she's incorporating physical movements and reasoning and all of the things she does. And I was like, oh, this is great. And again, it's like feeling independent and feeling like you're contributing and having community and talking to students and all of those things that are so vital to being like an independent human adult, right?

43:15 - Carrie Rickert Those are important. Yeah.

43:19 - Sabrina (she/her) Ortolano And I got brought in to be the director of the school in 2020 because the school was, we had a pandemic and suddenly we couldn't be in person. And the owner's like, I don't know what we're gonna do. So we adapted and downsized and changed our curriculum and did all of these things. And then getting through the pandemic when we started meeting in person again and what we're doing, he's like, you know what? I think I'm gonna retire. Like, let's figure out about closing the school. And I had a panic attack.

43:46 - Sabrina (she/her) Ortolano Because I'm like, this is the thing she does really well and is really nourishing to her soul and her brain and everything. And the same for me, like our community there is so extraordinary. And it's the bulk of the people who have helped us over the time that she's been sick have been an outpouring of that community.

44:05 - Carrie Rickert They're just really unique and extraordinary people.

44:09 - Sabrina (she/her) Ortolano And I was like, I can't imagine my life without this in it. And so, you know, I was like, okay, well, you know, I'm, I'm an employee. So I'm going to do the, do the cost benefit analysis of what, you know, what it would take to close the school and do this thing. And, and he's like, yeah, I just, you know, I want to, he's, he's getting older and he was like, you know, having a break during the pandemic was helpful and I'm ready to be in that phase of my life. And I'm like, Fair. And then I talked to some friends and they very generously were like, you know what?

44:41 - Sabrina (she/her) Ortolano You have been busting your butt for the entire time I've known you, which is nearly all of your adult life. Let me loan you some money to buy the school. And I'm really bad at asking for help and doing things. So I was like, I don't know how I feel about this.

44:56 - Carrie Rickert I'm like, no, I want to somehow miraculously.

44:59 - Sabrina (she/her) Ortolano It's funny because it's like, as caregivers, we get really tunnel vision stuff. Like we're like, no, we can't actually ask for things. Like they're just supposed to miraculously show up because of our force of will. It's so hard. That's exactly, you know, like we are acts of service people, right?

45:16 - Carrie Rickert Like that's our love language, acts of service.

45:19 - Sabrina (she/her) Ortolano Yeah.

45:19 - Multiple Speakers And so therefore there's that magical thinking that goes along with it, like, because we can magically understand what other people need.

45:28 - Sabrina (she/her) Ortolano Yeah.

45:29 - Multiple Speakers And so having someone offer this was like, was too much.

45:33 - Carrie Rickert I was like, Oh my God, it's, it's too much.

45:35 - Sabrina (she/her) Ortolano And so, and we finally, you know, my friend was like, look, I have, I have some resource and I would really, I would like to help you. And I had, I had a total, I'd like, I'm, I'm, I'm glad I was in therapy at the time. Cause I had a complete meltdown around the whole thing. Cause I was like, It's so funny the things where it's like, am I a failure because I couldn't somehow magically make the money show up without asking for help? Like all of these things, right? It was such a weird process.

46:01 - Sabrina (she/her) Ortolano But when I look back at it, I'm like, what was, what? It did.

46:06 - Carrie Rickert It did magically show up.

46:08 - Sabrina (she/her) Ortolano Exactly. Exactly. But somehow I was supposed to not involve another human. It was just supposed to grow on a tree somewhere or something. So ridiculous.

46:16 - Carrie Rickert Wouldn't that be nice?

46:19 - Sabrina (she/her) Ortolano So we took over in September and it's been really interesting because Cindy's developing a new curriculum and doing all sorts of things and really good challenges that are helping her stay really engaged. And, you know, we're trying to, I don't know, we're excited because we get a chance to share with people like, okay, like, look, here's the thing, like, in our American culture, we we don't like to look at when people have challenges, we don't like to, we don't like to age. Like, we're lucky.

46:47 - Sabrina (she/her) Ortolano It's like, I was saying this the other day, I'm like, I feel lucky that I get to grow old.

46:52 - Multiple Speakers Yeah, like, yeah, it stinks. There are things that don't there aren't great about it.

46:55 - Sabrina (she/her) Ortolano Yeah, my knees are really a problem these days. But like, not everyone gets to grow old. And I am so lucky that I get to grow old, that we get to grow old together. And every year is a blessing. So yeah, I've got more gray hair. Yeah, these things are challenging. But again, it's really shifted my way of managing things. I was talking to one of my employees the other day and she's like, you just don't ever seem super stressed about this. I'm like, oh no, I get so stressed about that. She's like, but you just, like, it's not like you're like showing it at us.

47:30 - Sabrina (she/her) Ortolano And I'm like, no one's going to die.

47:33 - Carrie Rickert Right. We run a massage school.

47:35 - Sabrina (she/her) Ortolano There are no major crises that are going to be something that we can't handle. As long as we're all alive to show up tomorrow, we can figure it out, right?

47:44 - Carrie Rickert Yes. We all have the ability to figure it out.

47:48 - Multiple Speakers Exactly.

47:50 - Carrie Rickert That is such a blessing. It's such a blessing. Gosh, I can imagine it because I know that after my brain injury, I was so worried that I wasn't going to be able to contribute to my life or support my children and I'm a single mother and so supporting my children is kind of important and I didn't want to have to rely on my parents and things like that and so knowing that Cindy has this outlet and that is allowing her brain to rebuild connections and help her in such a significant way. I know how important that is.

48:42 - Sabrina (she/her) Ortolano I'm so grateful for it. And I'm so grateful for the people and everything that we get to do. And it's so lucky. I feel like that's our theme. We just feel so lucky. We're so lucky to have each other, so lucky to have survived everything we survived, that we have the community we have. I get how lucky we are. And it's one of the reasons that we try really hard to pay things forward as much as we can, because we know how lucky we are.

49:10 - Carrie Rickert Right.

49:10 - Sabrina (she/her) Ortolano And, and we know that that's not everyone's experience and wherever we can to like help people in our community have a better experience, we do our best to try and support people because we're, we're lucky.

49:22 - Carrie Rickert Right. And that's, that's exactly how I feel. I mean, that's why I did this podcast.

49:29 - Multiple Speakers I, I, I want that.

49:32 - Carrie Rickert I have been so lucky in my life path. That in the support that I've had, in the outcomes that I've had, that I want to be able to share with others and to allow others to share their stories. Because I think these stories, these conversations that we're having are so important because they provide hope to people.

50:02 - Sabrina (she/her) Ortolano I agree. And I think to pooling our resources meaning like palliative care is helpful, right, like the thing that just like any sort of tips and tricks and things that help make your life easier.

50:17 - Carrie Rickert Yeah.

50:18 - Sabrina (she/her) Ortolano I started telling people, I'm like, I, you know, I, a lot of people try to help with things because they're, they're focused on their experience of what's going on. And I'm like, that can be some of the most singularly unhelpful help. Like reminding a caregiver that they need to take a walk is great, but if you're not going to come and give them some respite so they can take that walk, all you're doing is shaming them for, for failing at not taking care of themselves.

50:38 - Carrie Rickert Right. Yeah. You know, exactly. Exactly.

50:42 - Sabrina (she/her) Ortolano Don't make suggestions. Come, come and do something practical.

50:46 - Carrie Rickert Right. Well, that's, that's interesting. Cause my mother wouldn't leave. She, she wouldn't leave the hospital. And finally my brother's like, you are going home to my house. You are going to sleep in my bed and you are going to take a shower or a hot bath or whatever it is you need. And I will spend the night with Carrie. And he did. I mean, I think he did that a couple of times so that she felt comfortable to leave. Because that is hard.

51:17 - Sabrina (she/her) Ortolano It's very hard. You know, a few times Cindy had, because of all the medications she was on, she had, she developed some, some upper ureter UTIs, which if you've ever had one, it's like, they only have side effects. Like, it's not like the, oh, I'm having, you know, burning with urination or any of those things where you're like, oh, here's a clear indicator of what's going on.

51:36 - Multiple Speakers You just immediately have a low grade fever and then all of a sudden you're hallucinating, right? Which is terrifying.

51:44 - Sabrina (she/her) Ortolano You're looking at the person like, why are they talking nonsense all of a sudden? They obviously make no sense. Like, oh my God, we're like taking another hospital adventure. And there were a few times where I was so wrecked because I felt unsafe, like even looking at her and going, is she gonna be okay? Are we okay alone? We had a whole group of people who like, they all took a night and they came and stayed and spent the night with us just so that I would actually sleep. Because I was not sleeping because I was so anxious because I was like, I check on her every couple of hours.

52:17 - Sabrina (she/her) Ortolano I was like, are you okay?

52:18 - Multiple Speakers Are you making sense? Let's do your neuro checks.

52:20 - Sabrina (she/her) Ortolano Like all of these things, because it had collapsed a few times and it was so anxiety inducing that I was, I just stopped sleeping.

52:30 - Carrie Rickert And I'm not gonna survive that for very long.

52:32 - Sabrina (she/her) Ortolano For sure not. So all of our friends are like, I'll be there Thursday, I'll be there Tuesday, you're not gonna be alone with her, there will be someone else. And also just even from a logistical standpoint, we live in an artist colony and it's really poorly marked. So when I had to call an ambulance a couple of times, I had to find a neighbor that would go out and direct the ambulance to us because they couldn't find us. Which is like the last thing you want to be coordinating when your partner is like on the floor hallucinating, right?

53:03 - Carrie Rickert Right. Right.

53:05 - Sabrina (she/her) Ortolano And that was, you know, it was that, that's where I started to like have a meltdown of like, I can't do this. And my friends were all like, okay, so I'm going to come spend the night because you need to actually sleep because you're, you're on, like, you're, you're not, you're not doing good.

53:15 - Carrie Rickert Right. You're on the last thread.

53:18 - Sabrina (she/her) Ortolano Yeah. Yeah. And it was so helpful to just be able to actually sleep because I knew someone else was there to pay attention. And it meant that I could recover enough to actually be present. And like when she got more stable over time, it was like, that really made a huge difference in how I was functioning. You know, they'd come in and do dishes for me or they'd come in and like do a load of laundry and like, yeah, it may not have been perfect. It may not have been how I would do it or whatever it is I'm doing.

53:43 - Sabrina (she/her) Ortolano But you know what, the dishes were done. Right. And, and I, it meant that I could eat off a clean bowl, you know? And it's like, I just asked everybody to wash everything on cold. Cause if they're mixing colors, I don't want to stress about it. You know, like how can I, how can I lower my standards for what we're doing?

54:01 - Carrie Rickert Right.

54:02 - Unidentified Speaker Exactly.

54:03 - Multiple Speakers Yeah.

54:04 - Sabrina (she/her) Ortolano Because I need help.

54:06 - Unidentified Speaker Right.

54:07 - Carrie Rickert And it's, it is so hard. To one, ask for help, and two, to not just say, I need help, but here's the type of help that I need. Like, it's hard to, when you are so overwrought with all of the things, it is so hard to say, I really need somebody to just do my dishes. Or wash my clothes. Like, cause you're not thinking about those things. That's why they're piling up.

54:40 - Sabrina (she/her) Ortolano Well, and also this is one of the things I think is important for people who are family members or friends in friend groups out beyond the people who are going through things. Like not everybody cooks well, right? And not everybody cooks to our tastes, right? So if you want to bring food, if you don't, if you haven't made it for that person before, call them and see if there's someplace they like for takeout and have it delivered. Because I had some very wonderful people who made stuff, but Cindy couldn't handle any sort of spice of any kind.

55:09 - Sabrina (she/her) Ortolano So she couldn't eat a whole lot of the things that they brought. And then she was scent sensitive and flavor sensitive and all of these things. And I was like, it was more work for me to explain what she could eat than if they had just said, give me a list of restaurants I'm calling Grubhub. Like my one friend who lives in Oakland, she's like, I'm postmating you the things that I know you guys can eat right now. It's just gonna show up. They're gonna hang it on the door. You don't even have to talk to them.

55:37 - Sabrina (she/her) Ortolano And that kind of help is so profoundly helpful. And I think it's important for people who are not in this situation to understand what's actually helpful. And some of it is, yeah, it's money, but if you don't have the money to do it, the time is, come in, don't ask them to talk to you. Just do a thing in the house and leave. Because they're burnt out. I really, it was like, you get this thing where it's like when someone is potentially dying, where you're constructing this really delicate castle of all of the things have to be done a certain way at a certain time, with the right balance of stuff, and that's what's keeping them alive.

56:15 - Sabrina (she/her) Ortolano And when something, one little piece of it falls, it becomes this catastrophic thing because in your brain, you're trying to keep everything afloat so that they survive, right? And if like one little thing isn't done right, then you have this outsized reaction because it's the safe place to react. And it's not intentional.

56:36 - Carrie Rickert No.

56:37 - Multiple Speakers But you seem crazy when someone's like, okay, so I didn't wash your pot the way that like I used soap on your cast iron, which I think is a travesty, but, but still salt. So like, but you know, it's like, this is a thing I can re-season it.

56:54 - Sabrina (she/her) Ortolano It's not terrible, but like, you know, all of these things where it's like, this is not, does not have to be the travesty, but you blow up because you're so delicately balancing all the little threads of things that like in your brain, it's been equated to, I'm keeping this person alive.

57:07 - Carrie Rickert Right.

57:09 - Sabrina (she/her) Ortolano And if you pull one of those threads, like they might, they might die. And it's, I know it's not about me.

57:13 - Multiple Speakers And then it's going to be my fault. Exactly.

57:16 - Unidentified Speaker Exactly.

57:16 - Sabrina (she/her) Ortolano Cause I didn't hold all those threads up. Right.

57:19 - Carrie Rickert And, and, oh my gosh, the weight of that. The weight of them. Wow. So, Serena, tell me if, if there is one thing that you want our listeners to take away from your story and Cindy's story, what would that be?

57:48 - Sabrina (she/her) Ortolano The thing that I think is most important that I think I've shared the most with people is actions rather than suggestions. You know, the things that were most hopeful for us were I'm going to send you a caregiver every Friday and take time off. I'm going to spend the nights that you can sleep. I'm going to just be there and not expect you to talk to me or entertain me. But there's going to be another person in the space so that you can calm down for a little bit.

58:18 - Multiple Speakers actions rather than suggestions.

58:20 - Sabrina (she/her) Ortolano Being in the wellness industry, we had so many people call us and say, you know, it's important for you to take a walk. You have to get out in the sun for a certain period of time. I'm like, if I leave, she falls over. I can't go outside. You know, so like, if you want me to take a walk, come here and sit with her so that I can do that and not obsessively worry. Right? Because then that walk is actually helpful. So actions rather than suggestions. I find that a lot of people are like, Oh, I just want to remind you, you need to take 15 minutes a day to yourself and blah, blah, blah.

58:56 - Sabrina (she/her) Ortolano And that's, that's, that's great.

58:59 - Multiple Speakers But if you don't actually facilitate it, it's not, it's not going to happen.

59:04 - Sabrina (she/her) Ortolano And it's one of the reasons that caregivers get burnt out.

59:07 - Carrie Rickert And it doesn't have to be a profound like answer to everything.

59:10 - Multiple Speakers It can be, I'm going to come clean your fridge out. And I don't want you, it's not about you feeling bad.

59:14 - Sabrina (she/her) Ortolano It's that I want to take something off your plate.

59:17 - Carrie Rickert Right. And, and I like what you said. I mean, really just, I'm going to sit here. So you can relax. And if something happens, I'll take it.

59:31 - Sabrina (she/her) Ortolano And other than that, I'm just here.

59:34 - Carrie Rickert I don't need to entertain, I don't need anything.

59:38 - Multiple Speakers You don't have to talk to me, it's fine.

59:39 - Carrie Rickert Bring a book, I'll bring my laptop.

59:41 - Multiple Speakers Go take a nap. Yeah, exactly. Yeah, I think that's great.

59:48 - Carrie Rickert So, um, if listeners have questions for you or want to get in touch, um, how can people reach you?

59:55 - Sabrina (she/her) Ortolano Our, you know, our school has got a great website. It's IPSB.com. And my email is Sabrina at IPSB.com. That's the best way to get ahold of me.

1:00:05 - Carrie Rickert Okay, excellent. Thank you so much, Sabrina. I have enjoyed our conversation very much.

1:00:11 - Sabrina (she/her) Ortolano So nice to meet you. Thank you.

1:00:13 - Carrie Rickert You and Cindy will continue to be in my thoughts and prayers.

1:00:17 - Sabrina (she/her) Ortolano Thank you.

1:00:17 - Carrie Rickert I hope things continue to move in a positive direction for both of you.

1:00:23 - Sabrina (she/her) Ortolano Same for you. I'm glad things are going better.