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I go back to that question that you asked me, why is this critical? Because there’s a lot of people in our position, you know, and unfortunately, they don’t have access. And, and the other thing that I see happen both clinically and personally is that I see a lot of people who are diagnosed while you have Alzheimer’s and that’s it.

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.

Hello, everyone. Thanks for tuning in to the Happy Healthy Caregiver podcast, which is part of the whole care network. Now, it is also available on the whole care network streaming radio channel, download the app and get this podcast and many other podcasts as well. If this is your first time listening to the show, welcome. This is a show produced biweekly to help family caregivers integrate self care and caregiving into their lives. Each of our episodes has an accompanied show notes page. So if you’d like more details about the top products and resources we speak about, you’ll find the show notes by going on the website Happy Healthy caregiver. com underneath the podcast menu. Click the image or episode number for today’s show. The link is also going to be in your podcast episodes, description. If you aren’t on the happy healthy caregiver email list, I believe you are missing out every Tuesday. I send out a weekly roundup which includes tips under the pillars of happy healthy and caregiver. Plus up coming events, special offers and whatever else I can get my hands on visit bit dot Lee forward slash hh ce News. 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 22.5 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 if you’re interested, join the R PV panel at Rare patient voice. com/happy, healthy caregiver for this episode segment of what I’m reading, I’ve got a quick fiction read or listen for you and it’s called Yellow Face by RF Kwong. It’s a book about writers who are basically what we call frenemies. Then an accident happens that re routes the main character’s life. Well, I didn’t find the main character, June very likable. I found the book hard to put down the story grapples with questions around diversity, culture, appropriation, imposter syndrome, and social media bullying. All of this would make for an engaging book club discussion. This is a story about a young woman taking shortcuts and trying to fake it till she makes it. Does it work out for June? Well, you’re going to have to read it to find out. So I will link to that one in the show notes. My favorite thing for this episode is something that I actually don’t own yet. We recently went over to a friend’s house for dinner and I offered to bring dessert, but they said that they had it covered. They told us they were going to make us homemade ice cream and I immediately thought of the contraption my family had in the eighties where you had to freeze the cylinder and add the ingredients and stir and stir and stir until it looked somewhat like ice cream. Oh, how I was. Our friends introduced us to this Ninja Creamy Deluxe, which is an ice cream maker that their daughter wanted for her 210th birthday. They had prepped the flavors that they wanted to make and they froze all the ingredients before we got there. We had like a blueberry ice cream with Graham crackers in one and a blueberry lavender honey in another. Within less than 236 minutes, we had homemade ice cream in a scoopable consistency. This isn’t a cheap purchase, but I will do definitely be keeping my eye on scoring a deal on this. Maybe it’ll be like a Future Black Friday special or something, but I will link to it in the show notes so you can learn more.

Let’s meet today’s caregiver in the spotlight. Dr Zl Burgos Rebo cares for her husband Francisco, also known as Pako, who’s living with young onset familial Alzheimer’s disease. In this episode, Zai and Pako share their caregiving journey, talk about how they took time to understand and cope with Pako’s diagnosis and process their feelings of grief before telling others. They also discuss Pako’s treatment including E 2000 therapy and Lambi medication which helps slow down Pako’s Alzheimer’s and they talk about how they focus on living each day with intention and are enjoying crossing off things from their bucket list. Enjoy the show.

Welcome Z to the Happy Healthy Caregiver podcast. Thank you for having me. I’m so excited. I’m so grateful that we were connected. So, just a little bit of a backstory of how we met is we met online and I was reaching out to find out um, if people would be willing to talk to my father-in-law who cares for his wife, um who has been recently diagnosed, um and about this new drug, um, Lambi. So, and you volunteered and were great enough to talk to my father in law and I just really appreciate that, but I don’t want to jump right into that yet. I wanna kind of, um, back up a little bit and just kind of get to know you before we start talking about that. And, um, I know we’re gonna talk a lot about, um, your husband and your relationship with your husband. But I’m just curious how did the two of y’all meet? Um, it’s a, it’s a, it’s actually a funny story. So I first, well, I met his sister and we met at his house at her house. Sorry? And, but before I met Pao, I met his mom, I didn’t know she was mom. I just, I just met her and she saw me and she just looked at me and she said, oh, my son is going to fall in love with you when he sees you. And yeah, and it was kind of like who’s this lady like this is. So she was shopping for somebody. Yeah. And then Pako had finished, you know, he had ended a relationship that he had been for a very long term and me as well and we met and it was, it was, it was organic. It wasn’t like love at first sight, to be honest, you know, we had an instant connection and then it builds up and it builds up. But from the first actual conversation that we had, we talked like for five or six hours, it was like 22814 a.m. Oh, wow. Talking. I mean, it was just like Pako. It’s a very shy person. Very few words always been. I like to talk a lot. So maybe it was me that I was talking. I don’t even know we didn’t speak and it was just since that moment we’ve been inseparable. Um And that was 22814 years ago. Wow. Wow. My husband and I just had our 363th wedding anniversary this past weekend. Yeah. So I’m always curious how people meet. I love that. Your mother in law introduced you. So you knew that you were, you didn’t even have to worry about meeting, meeting her. That was a big already um in some people’s relationship that was already handled. And did you meet where you’re living now? And where do you live now? No. So we met actually in Puerto Rico and I was still an undergrad. And Pako was, um he had already finished law school and he was working as an attorney. Um, and that was in Puerto Rico. And then we moved, I’m, I’m, I’m in Orlando. Ok. We moved here because when I finished um my grad school, I had to do my internship and the residencies and all that and I matched here in Kissimmee. And I honestly thought we were going to come like, maybe like for a year or so and then go back to Puerto Rico and then one thing led to another and that was like 236 years ago. It was just, you know, it was a journey. It was, yeah, we’re supposed to be here. I, I don’t know. Yeah, I love that. So a lot of it’s been here in, in Orlando. Um So awesome. And what do you do for, for a living? What do you do? Both of you? So work or I, yeah, I am working. Work looks very different and we can talk about that. It looks very different that it, it like four years ago, even like two years ago. Um I am a licensed psychologist in the state of Florida and I have been directing a mental health practice as a private practice. Um I’m a clinical director for about maybe like seven or eight years now. Ok. And I’m also, I also consult with um local units here in Florida, in the hospital and nursing homes and all that on dementia um issues. Was that because of um OK, wasn’t, didn’t start out that way. Well, let’s, let’s talk about your caregiving story a little bit. Like, tell us, I, I love that you kind of set this, set the stage for it. But um how did you become a family caregiver? Oh Lord. So the long, the very long story short is that fo um he comes from a family of Alzheimer’s like his dad, Alzheimer’s, his grandfather died of Alzheimer’s um great grandma, died of Alzheimer’s. And then you have uncles and, and cousins and all that. Well, it was something that we always kind of knew like we knew and, you know, it’s in the family. Um But honestly, we never thought Pako is the youngest of four siblings. Ok. Never thought if anybody would have guessed it that it would have been Pako. So, um in the 2000 late 2300 Pako started changing, let’s say changing. Oh, here’s Pako. He wants to say hi. Hi, Pako. Yeah, Elizabeth, nice to meet you. Hi. All right. So Boco are kind of having some changes. Um And basically we never thought about Alzheimer’s because Barco was like 4445 at that time. Ok, for a whole year, he was having these changes. It was appetite changes, it was personality changes. It was just like spending habits, changes and it was like, memory what I thought it was like, maybe he was depressed and anxious and all that because I’m a psychologist. So obviously I’m gonna think about you’re informed. Yes. Yeah. Um, they don’t think about anything else. Right. And in late 2021 yeah, late 2021 he had a, literally in the last week of December he had a eye, eye appointment that was abnormal. They said he needs to do an MRI. We think he has a brain tremor. We basically did the MRI immediately negative for brain tumor. So he didn’t have that. Thank God. But then you need, you need to see a neurologist because um his brain doesn’t look good. It looks like very small for his age and it’s just like, oh, that’s weird. So we went to this appointment, like, not even remotely thinking anything about Alzheimer’s because at this point, we’ve been doing psychiatry psychology, all that thinking that it is men’s mental health changes that we were seeing and we’re sitting at that appointment and she’s asking me these questions and I’m telling, oh, yeah, he’s gaining weight. He’s eating carbs and just like candy, like he’s vegan. So his appetite is different. His diet is different. Um, and he’s just spending money, like, not even registering that he needs to like stop and you know, he’s losing temper more easily and he’s complaining that he’s forgetting stuff and he got lost driving and she’s looking at me, she’s like, you’re a clinician, right? I’m like, yeah, I’m a clinician she’s like, think like a clinician. And then she showed me the brain MRI. She said, look at this brain MRI. And that was the first time that I realized, oh, I’m a caregiver now. Yeah, that’s when he was diagnosed. And, and basically all of that first part of the year was just like doing all the tests to confirm the di and then she sent us to the young clinic at Hopkins, Johns Hopkins in Baltimore. And this is the very specialized clinic BCA was 46. So basically she just um sent us there and they did the genetic testing and that’s when it came back, that Pako had the genetic mutation and that the diagnosis was confirmed. Mm How I ended up in this journey with my husband. Yeah. So it’s been, you know, what, three it so years since then and I’m sure for both of you right? There’s um talk about the grief, I guess a little bit like for both of like, I imagine when Pako, you were diagnosed and you’re hearing it um anxiety and knowing like the grief that how your life is gonna change and it’s playing out differently than you thought like, how, how did you and how do you cope with that? Yeah. Um I think luckily because we had been dealing with a lot of changes even before the diagnosis that now we know it’s the Alzheimer’s right. We saw mental health treatment. So we both were doing individual um, treatments. Like he was with a psychologist and a psychiatrist. I have been doing therapy because I was trying to figure out like what was happening. Um, because initially when you’re going through an undiagnosed neurocognitive disorder, you know, it’s disruptive. But you ii, I guess you don’t realize how disruptive it is in the, uh, in the beginning just because you don’t have the awareness. Right? But so I was having thoughts like, you know, it’s, I know he loves me, right? I know I’m the most important person or one of the most important person in his life. I know he loves me is this is something happening with this marriage. Like it, there’s a disconnect like what’s happening. So I was, I said, you know what, I have things that maybe I need to address and I started doing therapy like even before the diagnosis. Yeah. Well, it was beautiful because I had been working with my therapist like for months when we got the diagnosis. So it was, it transformed. You didn’t have to go looking for somebody. You already had an established relationship. She felt like she knew both of you all and everything that I’ve been processing is just like now we know like now, ok, now it makes sense. You know, everything started to make sense. So we were both getting our individual kind of and to me to this day, that’s one of the single most important things that I can tell you it’s sustained my sanity. Do you think you have to find a certain type of therapist or? Actually, that’s a great question. Yeah. And so my, my therapist, he helped me so much initially. Um, but it got to a point that I felt that because remember when I went into therapy, I was thinking something else throughout the process, especially that first year, um, I quickly realized, like, maybe I need to find a different therapist, right? Um Because he was great and he helped me tremendously. But I think it got to the point that probably he didn’t have the training to deal with what I needed to deal with. And the, um because what you said is that’s it, it’s the grief. And there are therapists that are specialized in grief therapy and that’s it. So last year, I think it was like September, the practice that he was working with closed sees operations like from one day to another. So I was left without a therapist. And I said, ok, this is a recent, this is probably good and I basically sought out someone who has like very specific um qualities and, and certifications and all that in grief therapy, in grief therapy. Yeah. I think people think about death as grief, but there’s so many griefs um when it comes to, to life and um and, and caregiving. So I’m glad um what a great brain you have to, to like reframe that like I would, I think some people will be like, oh no, my, even my therapist has abandoned me, but really to reframe it and think, oh, now, here I can seize this opportunity to really find somebody that um can, can connect and you know, I know that you all are social about sharing your story and I’m so appreciative of it. I’m sure the dementia community and the caregiving community is for you. But why do you feel like it’s critical to do that? I think, I think it’s critical because in our case, I’m just gonna talk about our case. Um We’re different in the sense that Pako’s age is not the typical Yeah, story. And initially, I think I was even, even though his dad was also diagnosed very early when I met him, he was already sick. OK. So I, I don’t think it registered that he was a young person when I met him, right? Um And then obviously he passed from Alzheimer’s. So when, when you think about Alzheimer’s, you think about your grandpa, your grandpa, you think seven days and eight days? Yes. You think about someone older, even me as a clinician is just like, oh, this is happening like, oh Lord, like I cannot believe that we’re in this situation chronologically, it doesn’t make sense like it’s right. Right. So when we started reaching out to other people, we start realizing, oh, there’s a lot of people like this is happening to, obviously, maybe not necessarily as young as Pako, but we know people younger than Pako that have already passed because of this disease. I got 37 at 45. It’s just like, oh, wow, I didn’t even know this was out there. Like this was actually happening. Is they consider early onset anything below age 0003 or 60. Yeah, 65. So, yeah, you’re in your forties. Like it’s um and uh Parker was diagnosed when he was 46. He’s so that was like, you know, diagnosis was like about 2.5 years ago. Um So, so we said, yeah, why is it critical? Another, another part of it is just like when you’re diagnosed and you are as a caregiver, you receive this diagnosis, your life, it’s honestly shattered and anybody that says any different, I mean, God bless them. But I I’m yet to meet someone who’s like, oh yeah, this is such a blessing like, no, it’s, it’s a, it’s a world shattering the seas, right? And I can see how consuming it is and how devastating it is. And I can see all of that. But at the same time after that intense first year of grieving, like we, it took us a whole year to grieve and we didn’t tell anybody only like five or six people and we were working with our mental health providers intensively to process what was happening, understand it and be able to talk about it because we were not able to talk about it. You wanted to give yourselves the space to work through it before kind of widening your circle and bringing other people into it. And because I wasn’t ready for the questions because once you are out there, people ask questions or give advice, unsolicited advice. Yes, true. And I wasn’t ready emotionally to deal with either one of those. So either answer the questions that were going to arise or deal with the unsolicited advice or just like, you know, people always will have an opinion on what you’re doing and how you’re doing it. And to me, it was very important for me to figure out number one, how we’re gonna do this, not me, because it’s a team, how we’re gonna do this, how we’re gonna carry ourselves? What are our goals in this stage of our lives and then build the boundaries around that? Does that make sense? Yeah. Can you share any of that with me? Like I’m curious like, what was true? Like we were like, ok, we’ve got these things in place like what, what were some of those building blocks that you felt like you had put around you? Yeah. So first of all, it was finding a place that we were comfortable with the disease like we’ve accepted it, right? We didn’t immediately took us, you know, or at least maybe Pako accepted it quicker than, than I did um because obviously his family history, but it was just accepting it feeling stable emotionally, you know, like I can actually have a conversation, figuring out treatment, figuring out the implications, what this means, what this means to the family, what this means to everybody having deep conversations about our future. Like what, how does progression look like financially legally, all of these, does it help with that or was that the two of you all figuring one out? No, it was both of us, you know, always having conversations, you know, it’s just like, ok, because then we realize that because we don’t have Children. So we realized quickly that, oh, there’s a lot of planning legal stuff that we haven’t actually done just because, you know, we don’t have Children. So and it was just like, oh no, no, it doesn’t matter that you don’t have Children, you still have to plan. So it was just a matter of like planning. It was just ok. How does, um the provision look like, you know what’s going to happen if this happens? Meaning um, are we considering placement in any, you know, in five years or 10 years? Are we these conversations? Sure, we need courageous conversations. I call those. Yes and yeah, and very heartbreaking conversations too. But these are conversations that I feel a lot of people kind of shy away and I understand, I understand like you don’t want to talk about like the grim and I mean, we all need to have them. My husband and I just did this last year to get all our paperwork and our trust and stuff. Like I’ve lived through different family members and I’m like, I just don’t want this to be difficult for anybody. You know, it’s peace of mind really. It’s self care, like as it is, it gives you big time peace of mind I think to have those things in place. Absolutely. And in terms of, you know, how, how do you, like, who makes the decisions, what decisions are to be made and what are you comfortable with, with, um, doing or me doing even, you know, when you’re not going to do them anymore. And it was just, you know, a lot of, a lot of that, that we had in, you know, set up like, financially and all that and it was just like, ok, we have to do this now before we even tell people because once you do then people are gonna have their opinions. And one of the things that really surprised me was that I thought just because I’m the wife, I’m going to be able to make whatever decisions I want. And the attorney was like, uh, oh, no. Yeah. No, it’s the probate and all of that. It’s like, yeah, and you want, and you want Pako to be in, in, in those decisions and have a voice in those decisions. Um, and so the earlier, the better for all of that. Did you see an elder law care attorney? Was that? So we, we saw an, a state planning attorney and, and you’re right. I wanted him to make his decisions and it was also important for me that he made those decisions consciously. Yes. And then there’s no friction with anybody. Like it’s like this is what, this is what I want. This is what Pako wants. Like there’s no arguing with us. Yeah. Like those decisions are consciously made. That’s what he wants that way. No one, not even me, I can have an opinion about it. So those are some of the kind of the, the building blocks and it was just like, ok, what are we going to do? You know, travel all of these little things that you probably think in a larger kind of scheme, but you have to do it quickly. You have months because of the diagnosis. You know, you want to make sure you’re getting your big rocks and like the things that are really important to you and the values that you have together. I love that. It was, it’s a, it’s a learning process because it’s, you’re, it feels like almost like you’re automatic pilot, like you’re doing things just because you have to do them, but you have to do them very consciously and you have to think and you have to plan, but you’re also conscious that you don’t have enough time and that you need more time just because your future has been limited. Yeah. And that’s kind of, that’s kind of one of the reality checks of the scenes, I think. Yeah. Thank you for sharing all that. And Pako feel free. Like I, I don’t wanna leave you out. If you’ve got something to add, feel free to, to, um, to chime in, uh, you can ask me whatever you want. Well, I’d love to chat with you all about the, um, the, the, you know, there’s a lot of questions right about the drug for Alzheimer’s Lambi. And there’s not a lot of people that I know and I’m in this space that are, that have, have taken it. There’s been a couple of people, um, that I’ve been able to point my father-in-law toward, to, to have conversations. So would love to just hear your take on that journey. Like how you decided that it was a fit for you, how you went about the research, um, where you are with that now, wherever you wanna start, I, I don’t know where to start. II I, the lambi was first, um, talked about before I got the diagnosis and it was during my process of the diagnosis when, where, when it was, uh, approved by FDA, right? Like what are you talking about? Yeah. Yeah. No. Yeah. The Lambi, yes. The lamb hadn’t been approved when actually you started taking the medication. He’s right. Yeah. Exactly. So, oh, he was on a trial for it. Yeah. Exactly. But now it’s the, uh, when my doctors told me this, there’s this medication that’s been proven to slow the process of the, of the, of the disease. And, uh, I guess I was privileged that since I had a genetic mutation that was, oh, basis of, uh, of a study done by the Wash Washington University in Saint Louis. Since I have, I’ve had that mutation. I was oh taken to this clinical trial by the Washington University of Saint Louis because of my genetic mutation. And I was, uh, one of the few people that had this, uh, medication even before it was approved by the FDA. Yeah. When you’re doing a trial like that, do they, um, do they, do you have to still pay for the drug or would you know the, the actual people doing the, um, the clinical trial that you take care? Well, that’s a benefit, right? Of being huge benefit because I don’t know, what is it, what does it cost for those of you who aren’t part of the trial? It’s like about $36,000 a year, a year. And that’s, you take this for the rest of your life. So, yes. Yes and no. So, Bo is, it’s through Washington University, but it’s also the Diane Center and that’s Dia N which is dominantly inherited Alzheimer’s network, right? Um, basically paying for, for the drug, right? Um And this is, it’s obviously it’s autosomal Alzheimer’s. So if you have the genetic mutation, then most likely, and if you’re listening, most likely you’re going to be able to benefit from this um network and they provide so much support. Plus they have access to really innovative treatment even before they’re, you know, obviously approved. So the trial that Pako is right now, it’s a trial for a medication that’s called E 2814. And that’s at how targeting medication part of the um, trial is that they are everybody who’s enrolled in that trial, whether they’re positive for the gene and still have no symptoms or if you’re positive and you have symptoms, they will provide the Lambi. So started the medication in June of last year and it was approved, I think either July or August of last year. So he had been on the medication for maybe like a month or so before it was actually approved. So they’re giving that medication and they’re paying for it. Um And what they’re wanting to know is if you’re doing a Tau targeting medication and you’re targeting in the brain tau and beta Ayo plaques, if that is a better therapy than just doing one medication, which is, let’s say lamb. So the lamb, it’s not necessarily the study, it’s the, the other medication, the, the E 2814, but they, whoever enrolls in this study, they give the Lem B. Ok. Ok. So your life because the way that the, the protocol, the way that these medicines work, obviously, they’re wanting to clear in the case of Lem B, they want to clear better amyloid plaques, right? So if, when they do your MRI S, if the medication is successful in clearing that, then you stop the medication and then once it builds up, then you restart the medication. Gotcha. Ok. You give a medication because then you can cause a whole bunch of problems. I also was privileged enough that I was um diagnosed on the earlier stages of the disease. Because if, if there’s a small window for the lambi, if you are a later stage on the disease, they won’t approve the lake. So I was pretty vied for that. Yeah. So timing is timing is important. Um So would you recommend then like if somebody’s think, let’s say somebody’s been diagnosed with early onset, what would be step one? Like what would looking back like, what would you recommend that they, if they want to see that they were a candidate for this, how do you do that? First of all, is, is, is family history? If you know that you had one of your parents uh died from or, or, or has Al Alzheimer’s and your grandfather had Alzheimer’s and you have many uncles, aunts that have uh uh developed Alzheimer’s, then you should uh start asking questions and tell your doctor and if your doctor doesn’t know, get another doctor. I mean, I, I know there’s a lot of, of, uh, doctors who don’t even know this cysts, they don’t know about a genetic mutation. They don’t know that Alzheimer’s can be, uh, uh, diagnosed at a, at an earlier stage in life. And when you tell them about early onset Alzheimer’s, they think it’s an early, uh, stage of the disease and it, uh, they don’t know about that this early onstage Alzheimer’s is that the disease is uh developed at an earlier stage of your life. They don’t know the difference between that. So, you know, you should get a AAA doctor who knows this. Yeah, a neurologist maybe because when you think of doctors, you think they, they all know everything about later. The latest things about medicine and they do not and you should get like, uh, probably a AAA general practitioner maybe, doesn’t know. And that’s OK. That doesn’t mean he’s not knowledgeable about the stuff they do. But you should get, uh, maybe like, uh, um, a neurologist and it’s more than a neurologist. Someone who specializes in dementia. OK. Spoken in this past year to lots of doctors, which in my opinion, they’re amazing, they’re amazing doctors. But when you, when you ask, they say well, he has Alzheimer’s. Yeah. Is he going to go on remission? I’m like, what do you mean? Is this not cancer? Like what, you know, highly specialized doctors? So, just because of the age and that I go back to that question that you asked me, why is this critical? Because there’s a lot of people in our position, you know, and unfortunately they don’t have access and, and the other thing that I see happen both clinically and personally is that I see a lot of people who are diagnosed while you have Alzheimer’s and that’s it. Yeah. It’s not a death sentence. You can live with Alzheimer’s for and have joy and have less all of that. Yeah, but the doctors are not giving some of them, not all of them, but some of the doctors are not giving resources. There are things that are out there. So initially, one of the things that I think it’s important is trying to get someone to a specialized clinic that, that, that makes the whole world different and to get your loved one to a teaching hospital that makes a lot of difference. Um making sure that your doctor is knowledgeable in dementia. That’s also important. And there are avenues, you know, a clinical trial is a great avenue because you know that it releases you from the financial burden of, of the medications and all that. Like, for example, and Pako and I were having this conversation, we were in Washington advocating um with congress members and when we were there, it was just like Pako and I have, I think normalized our experience because we’ve had honestly amazing doctors and it’s been rather accessible point that his infusions are here in my house. Yes, that’s so nice. Is that, is that for, is that because of this trial or is that open to anybody? Ok. Um And it’s just like, oh, our experience, but our experience is not necessarily representative because there’s a lot of people who number one do not have access to the medication. Number two, if they do have access, then insurances are not covering like I was yesterday, I have a friend and she is a caregiver but she lives in Minnesota and I met her through one of the support groups online and we became friends and she travels and whenever she comes to Orlando, we have like caregiver lunch dates. I love it. It’s amazing. Um, because it’s, there’s something different about talking to someone who’s also a caregiver like they’re my people. Yes. It’s, it’s a, it’s, it’s different. It hits different and her husband, um, she just real, um, she just learned that Blue Cross Blue Shield is not gonna cover the cost of the medication and they, they’re stopping treatment from one week to another after he’s been on the medication for like five or six months. Yes, because he’s young. That’s, that’s, he’s not on Medicare yet because obviously a 5040 something year old is not going to be on Medicare unless you fight for it. Right. So Medicare will pay, will not pay for this. I don’t think, would they? I think Medicare is. Medicaid is the only one Medicaid or Medicare? Ok. Well, what is, what has it been like this past year? You know, being, having the infusions and like, were there side effects? Did you um, has life looked any different? Let me preface by saying that the, the infusions are every two weeks? Ok. Every two weeks you have. So there’s a lot of time commitment, right? Once you start treatment, it’s every two weeks on the dot You have to do it every two weeks. Right. And not everybody can get it in their home. Most people have to go someplace like I’m blessed. You know, you have to drive and you have to go to infusion center and, and all that and then it’s a, it’s a lengthy process because the medication, like you have to do, like, it’ll take, it’s a process that will take probably like a three hour appointment and you do that indefinitely. So, so that’s kind of the logistics part of it. But there’s also parts that people don’t think about and it’s necessarily the, all the follow ups. Like if you’re doing this medication, you need to do MRI S which they’re called safety. MRI S. You have to do blood work. You have to do pet scans. You have to do so many other things because this medication does have side effects which we haven’t had. And I’m so grateful that I would. Yes, I do. Um But there are side effects that, that, that you have to deal with and sometimes, and you have to do this brain MRI to make sure that your brain is tolerating the medicine, right? Um, causing any disruption. So if you’re taking the medication, but you’re not doing all the other things that you have to do in terms of like the MRI S and the blood work and the, all of these bio markers, you know, then I, I wouldn’t advise it because you don’t really know, you don’t know if it’s working or well, you don’t know if it’s working, but you’re also not following the safety protocols. And that’s you who’s gonna pay for the MRI S, you know, can you afford an MRI every few weeks? Right. So it’s not, that’s why I was asked when you, when you asked about the infusions, I was saying is the medication is $36,000 but there are so many other other that you have to consider as well. And, and I think that’s the awareness that we are so passionate about bringing because it’s just not one thing. It’s a, it’s a whole cosmo of things. And if you don’t have a knowledgeable doctor, then you risk being on the medication not doing your safety MRI S. If something happens, you’re not going to catch it on time. Yeah. So that’s it. And then in terms of the side effects, Papa can talk to you about the side effects, I mean, the, the side effects, the first, I guess the first, the first one was the most, uh, I guess, troublesome because it was like, uh, I, I, it was like a new thing coming into my body and I guess, I think my body tried to reject it as much but it was, it was really, really rough the first, maybe like, three times. But it started, like, getting, like, less and less, uh, side effects as the, like, nauseous. Were you feeling nauseous, nauseous? But a lot of body pain, like, my hurt, my, I had fever. I had just, like, headaches, fever, kind of a hot sensation and just, like, feeling tired. Not yourself. Yeah. Like, almost like a flu, like reaction, you know, like, you feel crappy, you know, now, six months after I just get, like, a body pain, like, like, maybe, like, like when you start to feel bad when you get, like, a cold or something. But it just, maybe like a half a day and that’s it, like, last infusion, he had the infusions and then that same day we went to a comedy show. Which, yeah, which a few months ago he would not have been able to. So it gets better. It’s gotten better for you. That’s good. That’s good. And I, I know people who are on the medication, they have zero side effects. Like nothing. Right. Yeah. It’s important to, to, it’s important to add that I have an underlying disease. I have an autoimmune disease, which actually me too. I have an autoimmune disease. I have hypothyroidism. So, yeah, after a negative uh, rheumatic arthritis. So it actually flares up my ra I see. Makes sense. People who don’t have autoimmune conditions get. Have a, yeah. And, and also, and also, you know, talk to your doctors because when we were seeing that Pako was having those unpleasant side effects, they’re premedicating him. And that’s helped significantly, you know, you can get a medication like Benadryl, they do like a little cocktail like Tylenol, some steroids and they do that before the infusion and then it’s very tolerable. So we’ve had honestly really, um, positive experience. We haven’t had any real scares to be honest. And in terms of it’s working or not, it takes time. It’s not something like you’re going to see a difference, you know, in a month or so. Now we had our, uh, we went to Hopkins um, last week actually. And the doctor, to me, this is good news. He said, I don’t think this is necessarily stopping the disease, but it’s not progressing as quickly as we thought. And that’s what we want because that’s the medication, the medication is not necessarily going to stop this disease. That’s not, it’s not a cure yet or, but it’s, it’s so, it’s supposed to slow it down. And that’s what we think, you know, we’re seeing Pako, obviously, there’s changes and there’s decline but it’s not going as quickly we initially were told, which was your goal? Yeah. And that’s the goal. And to me, I was like, I’ll take that. Yeah, I’ll take it. That’s, that’s good. That’s good news. I’m like, it could be worse. Where have you found? Support? Like, for both of you? Like, I mean, I know you’ve got your therapy appointments but with other caregivers or other people who are living similar like with, did the Johns Hopkins? Did they connect you to other people or the Diane connected to, connected us to Diane? OK. I think that’s the important part of like going to a place that you know, that they have resources, right? It connected us to Diane. Diane has amazing resources. They actually have a support group which is obviously specifically for patients who have the diagnosis and are symptomatic. OK. Arco meets with them and they formed a beautiful community and they, they, they love each other and I used to attend a support group which is for the wives or, you know, partners for them. And I Lorenzo’s house, I don’t know if you know about, yes, I do know about Lorenzo’s house. Oh my God, they’re amazing. Lorenzo house. They’re amazing. Um They have been able to foster a nice community there and also the, our local chapter of the Alzheimer’s Association has OK. Good. Amazing. It’s been instrumental. They also created uh an amazing community of advocates. Um It gave us an avenue to feel empower and do something about this and not, not let the disease kind of define us or define our future. So it’s, it’s given us, you know, a good foundation to do what we want to do, which is, you know, get this message out. We have an amazing support system. I love that. Well, I’m going to link to a lot of those things so people can um can connect with that. I wanna kind of switch gears because I wanna know too, like, how are you, how are you seizing the days and like living with joy and like, what are you all looking forward to and you know, maybe just shine some light on that because I think those are the pieces that don’t get spotlighted enough. Yes. No. And I think this is so important. I think this is so important because like I said, it’s, it’s very easy to be consumed and that the, the, the grief kind of overpower. I think it’s important to understand grief and leave, not leave but live with it because I don’t think it’s something that it’s just going to go away because that’s the reality. The reality is that the is, is here and, and, and everybody knows how the scene progresses and all that. However, I think the, the shift was ok, we’re in this situation. It sucks. Are we going to just live crying every day or are we going to find meaning and purpose and, and do something about this? And then when we decided that’s what we wanted to do, we’ve been very intentional. So everything that we do is very intentional. I love that. Yeah. No. And, and we said, well, you know what, why do we, we love our dogs. Like I said, we have five. We love our dogs. So that’s a huge part of it. They’re therapeutic for Pako. Um We love art. We love traveling. So we focus on that like, ok, if we have because we travel a lot for medical reasons a lot and it’s exhausting. But if we’re traveling for medical reasons, I make sure to Sprinkle some fun. Get some fun. Yeah, why not? No matter where we go, we’re gonna find a museum, we’re gonna find something. It’s a, a baseball game, it’s gonna be a concert, it’s gonna be a friend that lives there. So everything has an intention so that we counteract the, the bad of right. So we’re looking forward to. So we’re traveling. So Pako when he was diagnosed um that first year the doctors and my, my work, my God, my work is so supportive as well. Like I’m so blessed. They basically told me, tell us what you need to do, make it work and that’s it. So I was able to shift around my responsibilities to make so so that everybody fits, you know, and that I’m taking care of fo I’m taking care of my career and all that. It’s like a puzzle. It’s a big puzzle. It is a puzzle. It is a puzzle. Yep. And we have like, you know, everything has to be written down otherwise I forget. So, so they encourage us to travel and they’re like, you need to travel. It’s now, it’s, now you have to do it. I was like, how am I gonna take time off? I have to work. I have so many financial responsibilities because he’s not working. And now I’m, and that’s it. No. And initially I took a whole month off and I saw, we said, Pako, sit down, tell me places that you want to see and we made like this little bucket list. Yeah. What’s on the list? What was on it? So that first trip we were in Italy and Germany and in Spain and it was like an art, love it. So we went to museums um that we’ve always wanted to visit and we went to places that we’ve always wanted to visit and we were there for like a month, a whole month. And ever since we, that’s what we do. We’re traveling a lot, we’re seeing places and we’re having experiences. It’s just like there’s a concert we’re going, yeah, an opera. We’re going, you know, it’s just like it’s find the intention. It’s just like even in the small moments, I was talking to my therapist. Um and I was like, to me just going to a restaurant by myself sitting down and just enjoying the food by myself. That’s a treat. That’s a retreat to me. You know, I, for an hour, I’m not talking to anybody. I’m just sitting there, I’m just enjoying my food. You know, because it’s as a care partner, you need time for yourself too. Absolutely. I was just like, um, I was riled up, you know, you’re stressed. So, do you feel guilty when you do that? No? Good. I mean, a lot of people really struggle with that, you know? But it’s like, but you’re also a clinician who is helping people with mental health. So I’m wondering if that maybe informs you’re probably telling us people not to feel guilty about it. I did at the beginning, um, when I was, you know, I was, it took me a while to, like, have fun and go out with my friends. Right. Um, because, but it, it doesn’t, it doesn’t make me feel guilty now. It did in the beginning. But now it’s just, it’s not guilt. It’s just like, oh, I feel bad pa, it’s not here, you know, like, it’s, uh, it’s ok to miss him, it’s ok to miss him. It’s just like, oh, I wish, you know, I wish he would see this or, or in a place and I see a couple and it’s just like, oh, you know, so it’s more of like, nostalgia that. But yeah, at the beginning I did but not, not anymore because I, I understand how important that is. I understand what clicked for you because like, listen as a coach, like I really, there are some people that I cannot break that, you know, it cannot, I don’t want, I want them to mitigate burnout and I want them to understand that um you know, a break is better than a breakdown, right? Like it’s, I, I think it, it’s a combination of with our relationship has always been like that too. Like we’ve always had um prioritize obviously the the the time as a couple, but also like me doing that and having independent identities as well. I think there’s a lot of cultural stuff too attached to, to how one person might perceive um you know, having fun without the other person, but also having a deep understanding of the consequences of caregiver burnout understanding. That was like, OK, I understand the effects on the health, physical health, I understand the effects on lethality and mortality. I under like I, I know this, I know that if I continue to feel exhausted every single day because I wanna do it all, I’m not gonna be able to do anything, right? That was kind of the shift like understanding like I can do all things just not at the same time. Yes, I used to say the same thing I could have it all. Not all I can’t have it all at once. Yes, it’s so interesting. You have to get to that point. Like, I just, I’m curious that thank you for sharing that. Yeah. Absolutely. And, but also, like, I think the support because he’s very like, no, no, go, go, go have fun, you know, just, you know, and, and if he’s not hanging on to your dress and be like, yeah, I don’t think that would be harder. Yeah. Spark was just like, you know, have fun and I’ll be fun here once you come back and you have stories to share and things to talk about. Like it’s like I do think like my husband and I have a good balance, I think of doing stuff together and doing stuff apart which Yeah. Well, I, I love that. I want to ask you a question. This is my journal that I wrote. It’s helps people prioritize their self care. It’s called the Just For You Daily self care journal. So well. And I, you know, I have my own caregiver story that was what prompted all of this too. But I um let’s see, I’m gonna ask you guys a question here. I um how are you all like, what is, how do you capture the memories that you’re living? I think it’s a combination of obviously taking and, and I didn’t do that. I didn’t do that at all like I did, I wasn’t a person that was always like taking pictures or videos, you know, I was living, you know, in the moment not, but now I’m very intentional and that was actually a lady at the support group. She said take pictures, take videos, you will want to have those. So now I’m very intentional about that, but sometimes I just find myself not just like contemplating it and just like memorizing everything that’s happening or writing it down. There’s definitely a theme in our conversation um about in intention I think is a big Yeah, it’s like, it’s not just gonna like, hey, let’s see what happens. Like it’s, you’re living with purpose and very pur purposeful both of you about what you’re doing. Yeah. Actually it makes me emotional. Yeah, it’s ok. Listen, I, I leak every podcast interview so I just leak a little bit. It’s ok, but just means we’re human so I could talk to y’all all day. You’re lovely people. And I just thank you again for what you’ve done, you know, for me and my family. Um How do people stay in touch with you all? How do they keep like, follow your story and your journey and your journey on advocacy as well? Yeah, thank you. So we have this um Instagram account that we started last year. Um No intention or no knowledge that people were going to be remotely interested listening to what we had to say. But we figure, you know, if we can help one person then that’s it. And honestly, it’s been wonderful. Like we’ve been able to help people connect people that get in touch with me um with actually medication, the lamb and all that. Um So it’s our Instagram account. We do have a tiktok account, but I’m not too active on the tiktok. So we’re more active on the Instagram account, which is, it’s a Spanish word. It’s in no vid mente. And the reason that I decided to select that it translates to unforgettable mind, unforgettable mind, I love that. We’ll link to it for sure in the show notes. So, and, and many of the other things, Lorenzo’s house and all the other resources that you shared and if um but I love that. Well, you all are adorable couple and thank you so much for just, you know, sharing your story and, and letting people kind of, you know, into your lives a little bit because I do think the vulnerability is healing, right? Like it’s um to give, to give purpose um and, and capture all of that. So I wanna, yeah, something and I guess uh what I wanted to add is that we are aware that we are really, really, really privileged that we surrounded ourselves with a great team of doctors. I surrounded myself with a great team of uh caregivers. Uh My wife surrounded herself with a great team of people who support caregivers. So uh we wanted to reach out to anyone that may feel something is wrong and they can reach out to us anonymously, they can reach out to us and, and then we can, we can, I guess uh connect you with, with what we, what we can and what we know. So that’s what we wanted to do with, with our uh Instagram account and just with sharing our story. That’s a gift. It’s a gift. Thank you. Like that’s, it’s a gift that you were passing on to other people to fast track them to support and resources. So it’s amazing. I, I appreciate you all. Let’s let’s keep in touch. Thank you so much for coming on to the show today. Oh, it’s a pleasure. Thank you so much for having us. Thank you.

Hello, podcast listener. If you’re caring for a loved one, Alzheimer’s or dementia, you don’t wanna miss all’s authors podcast. Untangling Alzheimer’s and Dementia. I’m your host, Mary Anne Sco, a registered nurse author and dementia daughter. In each episode, I interview one of our 300 plus authors about their personal dementia story and why they chose to write about it, sharing intimate details and painfully obtained knowledge to help you on your journey. We share a variety of stories across all diagnoses and from a range of caregiving experiences. You can find us on your favorite podcast platform from the whole care network. Remember you are not alone, one can sing a lonely song, but we chose to form a choir and create harmony. Find us at all authors.com. See you soon.

Thanks for joining us today on the Happy Healthy Caregiver podcast on the whole care network. As always, show notes that a company today’s episode can be found on my website Happy Healthy caregiver.com. Just look under the podcast menu for today’s episode image. And that will take you to the page with the links and information we spoke about today. You’ll also find other resources on the website along with links to purchase the just for you daily self care journal. When you purchase from my website, you’ll get a signed copy and for a limited time free shipping. If you’ve enjoyed what you heard today, consider subscribing to the show on your podcast platform. It really helps other family caregivers find the podcast and you’ll automatically receive our biweekly shows in your podcast listening queue, maybe while you’re subscribing, consider leaving a five star rating and review or just simply talk it up on your social channels. Let’s stay connected. I’m on Instagram and Facebook as happy healthy caregiver. And until we meet again, please take care of you.

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