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Becoming My Father’s Caregiver · Mortal Support

• speaker-1: Hello and welcome. My name is Donnie. speaker-0: And my name is Noelle. speaker-1: And we are so excited to welcome you to our new show, Mortal Support. In the show, we're going to be talking about human stories around caregiving and death and how these experiences can provide support to others that might be navigating this or anticipating navigating this in the future. For me, grief and loss have been a large part of my story and my experience. My dad died about thirteen years ago when I was sixteen, suddenly. And then last year my mom gave me a book to read while my grandpa was in the third year of pancreatic cancer. And I just felt pulled towards the end of life space. I quit my job at a tech company, did a full one eighty, began volunteering at a hospice home, which I've been doing for the last fourteen months. How about you Noel? What drew you to this space? speaker-0: Well, I have worked in marketing and branding for several years and I've always been pulled towards things that people don't really want to think about. So disability insurance, credit card processing, and now of course caregiving and death. And so a couple years ago, unfortunately, I lost my uncle unexpectedly and he didn't have an up to date estate plan. And I was sort of shocked on how gnarly that process is. I Couldn't believe that this is something that's been happening since the beginning of time. And it is just such a painful process for people when they're already grieving. And so Peter, my uncle who died, he was the type of person that just always showed up and fixed things. Like if you had something broken, he was there to fix things. And so I I channeled my inner Peter and I created a legacy in estate planning tech company called Legato. And that's actually when we met. We met through a conference called Edwell. And I believe our first conversation, correct me if I'm wrong, but I believe we chatted about the fact that there's so many resources and tools out there for folks, but people don't know where to find them. speaker-1: I remember that vividly and talking about just what a quagmire it is. So that's what we're building here at Blaze. We're building a tool that's free for families to help navigate caregiving. speaker-0: I think one of the things that you and I realized is how many stories people have and our goal for mortal support is to make sure those little details of caregiving or loss aren't just sort of left in the wind. speaker-1: One hundred percent. To know that there's a shared experience of frustrations, realities, sometimes even funny stuff that happens as we navigate caregiving. So we're very excited to introduce our guest, Nicole. Noel, you actually were recently taught by her. speaker-0: Yeah, I also took the Anelda training to become a end of life doula and Nicole was my teacher and she was amazing. And what's so interesting about Nicole is that not only is she a hospice nurse, labor and delivery nurse, as well as a birth and end of life doula, she's taught at places like Johns Hopkins and been on the George Washington Hospital Ethics Committee. But she actually also teaches about how to navigate challenging relationships around grief and death within families. So her perspective is really interesting and even with all of the skills she has from a clinical perspective, being a caregiver for an adult loved one is equally as challenging and she really shed light on that today. speaker-1: Without further ado, we'd love to open up the conversation with Nicole. speaker-0: We have an icebreaker that I hope you'll join us in answering. speaker-2: Okay, let's play it. Let's do this. speaker-0: Love it. What quark or aspect of your personality is only going to get louder with age? speaker-2: wow. R extremely dark humor. Mm-hmm. speaker-0: What would be an example of that? speaker-2: one thing where that was kind of revealed to me was my first nursing job was working the night shift in an as an ER nurse in Washington DC and in general like night shift workers in a hospital, especially in the ER, have a lot of gallows humor. And so they would joke about the gallows dark humor. And I remember thinking to myself, this is just kind of what I'm like all the time. speaker-0: I am so with you on that. I I'm gonna share mine. I believe that my although I am working to make my filter and my feedback less abrasive, I think that as my frontal lobe deteriorates and I get older and don't care as much, it's just going to probably get worse. I hopefully that'll just add to the the humor of People laughing at like, it's just it's just crazy old Noelle. Which is the goal? speaker-1: For me it it's this is I think a little bit more boring compared to both of yours, but it's doing puzzles. I love Sudoku. I I play all the LinkedIn puzzles every day. there's like a great meme about like the people that play the LinkedIn games are among us and I am one of those people. But I I love puzzles and I w would really look forward to just doing a lot more puzzles. speaker-2: Ha ha ha ha. speaker-0: I remember the moment where I joked about those people and then you you brought up you were one of those. well, jumping into our first couple questions, I thought we could start with something pretty basic. How would you define doula? speaker-2: Hmm. I define doula broadly as someone who supports another human being during some type of major transition, some type of major journey that they're going on. And in particular, what the doula is doing is supporting them in the non-clinical, non-medical aspects of that journey. speaker-0: What drew you to this work? speaker-2: I spent my early twenties as a hipster in New York City. for work. I was producing festivals and concerts and and I did love that work. But somewhere around my mid to late twenties realized that there was something more that my soul wanted to do, but I just didn't know what that was. And so I saved up some money and traveled to Indonesia and my maybe like second week while I was there, I met a midwife. And at the time I didn't even really know what a midwife was. And then that midwife and I became friends and eventually she invited me to a home birth and it you know it it changed the course of my entire life. So I returned to New York City, I did a birth doula training, started working with some clients. I loved that. I didn't A postpartum doula training. I loved that. I did a lactation counselor training. I so loved that. And so I just kind of kept doing these other trainings. And then after a while it became really clear that that was my purpose in this lifetime. And so I decided to go back to school. I I was pretty afraid to return to education because I still had some student loans that I was paying off. So I took the leap and I got very lucky and I went to nursing school and then that was kind of when the seed was planted that maybe someday I would work in hospice. But still at that time I I was just full throttle and felt that I was, you know, gonna finish nursing school and then begin to do my masters to become a midwife and that I would have a very long life of working as a community based midwife. And then at the end of my life, I would then do hospice and then of course, you know, you make plans and the great mystery laughs at those plans. So things shifted around quite a bit in the years after that. speaker-1: As you shifted more into the hospice world, was that primarily first through nursing or primarily first through like as you're me talking about doulas as kind of transitional guides? Was it primarily through the doula realm and how did you get there? speaker-2: I would tell you that my transition to supporting death happened while I was a birth doula, even before becoming a labor and delivery nurse. When I was a birth doula, I was a part of births where there was a known fetal demise or a baby being born that we knew was going to be incompatible with life, so would just be alive for a couple of hours. So I did have several thresholds. experiences even within my birth work, which is pretty common for for any and all birth workers to have that. I think if you are like a real birth worker, like you've been to you know more than twenty births, you know that death is very much a part of the birth experience in a number of ways. And and I would also say that in my first nursing job was working as an ER nurse. And I was also a part of deaths in an ER that were truly less than ideal, and I would say they were hard to witness and hard to be a part of as a clinical person. speaker-1: Thank you so much for sharing what that experience in terms of ha both as an ER nurse and as a labor and delivery nurse and doula and experiencing with with what that process looks like, how death is a part of it. Something that I've heard just around hospice volunteering and then talking to other doulas, whether they're on the birth side or the end of life side or death side, is around like the veil is thin. speaker-2: Yeah, I think if you are an experienced birth worker, it would be impossible to not acknowledge how thin the veil is. speaker-1: Makes a ton of sense. Thank you. speaker-0: So switching gears to caregiving, what was your journey like in becoming a caregiver? speaker-2: well. well officially I crossed that threshold into becoming a caregiver for my father that had k that was diagnosed with cancer in October of twenty nineteen. Earlier that year in January, my father had fallen and all year long kept complaining of back pain, complaining of back pain, complaining of persistent pain that wasn't going away despite trying physical therapy, despite wearing a back brace, and it kept getting worse. So that happened in January. And then by the time October rolled around, I had flown home to spend some time with my parents. And it was obvious that my father was in debilitating pain and really couldn't it was like difficult for him to even just get out of bed and do like daily activities. So we took him to the hospital. They did additional imaging. Somehow it was missed that he had cancer, but now in October 2019, it had become metastatic and it had spread throughout his spine. So I at the time I was living in Washington, DC, and my parents live in southern Illinois, the which is where I grew up. So Then I entered that portal of you know, of caregiving where I was flying back and forth, transversing time zones, trying to navigate my work commitments. I think like for a lot of people, when you're thrust into that caregiving journey, it kind of feels like you're just treading water and trying to keep your head above water, oftentimes not keeping your head above water, but you're you you're trying to. speaker-0: I'm curious, what happened in your life after you became a more involved caregiver? Like what is it that changed in your life because you had to take on this full time role? And speaker-2: Yeah. speaker-0: what how what would you call the role too? Like if you had to? speaker-2: Well, it's c it's caregiver and it's healthcare navigator. I th I think that that is both. I mean, healthcare navigator is a part of being a caregiver in modern America, but they really are kind of two different roles because one is focused on the patient and then the other is focused on the external bureaucratic world. My life changed tremendously. At the time that my father was diagnosed, I was working PRN, which is Latin for like very, very part-time, essentially, if I were to like reduce it down. I was working part-time as a hospice nurse and part-time as a labor and delivery nurse. So often I would work one shift a week as a hospice nurse and then one shift a week as a labor and delivery nurse. But when my father was diagnosed, I released my nursing roles. But I still was training people. I was still a teacher. So I was still A birth doula trainer and I was also a death doula trainer with Anelda. I also at that time was a clinical educator with John Hopkins Nursing School. So those teaching gigs, I was not able to stop those because those are things that people pay in advance for, and I was not in a financial place where I could just cancel those workshops. So that was why every 10 days. I was flying back and forth between Washington, DC and Southern Illinois. So I think other life changes outside of work commitments was also just which I which I is like so common when you're a caregiver, is just how small your world gets because you just don't have capacity to do much else. So I really wasn't seeing friends very much, definitely wasn't working out very much at all. I think I pr I I mean I know I lost weight during that time myself just from stress and from trying, yeah, being so deep into the caregiving journey and trying to support my parents. I think when you step into caregiving, one thing that I would describe it as is that your life that before that was multidimensional becomes very, very narrow in ways that you kind of can't even believe are happening, but they're part of the necessity of being in caregiving. speaker-0: You mentioned that you were thrust into it. What did that look like? The administrative side of it versus the physical and logistical side. speaker-2: Yeah, well so I I would say yes that during my father's we could call it pain journey from January to the cancer diagnosis in October, I was definitely helping him navigate and advocate for himself. So sometimes that meant being at doctor's appointments in person, trying to fly home for them, but sometimes it also meant just being on speakerphone during these visits. An another aspect of my father's journey that was particularly challenging to navigate, which I which I know is very common, is that at my father at the time was in his 70s, a retired human being, so he was for America. At that time, then we have you know many people that are on Medicare. And then there's part A, Part B, Part C, there's all you know all these parts that then dictate what physical therapy might be covered. what what medication might be covered, what is your copay for that medication. In addition to that, my father is a veteran. You know, sometimes when you are a veteran, there are things that the US Department of Veteran Affairs will cover as part of your medical care. But in order to get the approval for that, you have to then go to one of the few veteran hospitals that are still functioning in America. Which we do have one that's in Iowa, but that is a long drive away. And there were many times that my father was just simply in too much pain to sustain a long car drive going there. So then we were trying to set up virtual visits with those physicians. So we were already dancing this dance between Medicare Part A, part the medication portion, and then veteran affairs and trying to get different things covered and and what could be different possibilities of getting support for him around this pain that was persistent and nothing was really helping it. speaker-1: Yeah. Wow. And I think as someone that's just begun to look in and and really dive into Medicare and the VA and the different benefits, it is a whole world. The model in which all these organizations work together, it is such a burden that we put on our seniors to be able to navigate it. and it's mind blowing in a lot of ways. speaker-2: It is mind blowing. Like just just navigating insurance in America, I think, is like a profound societal burden that I really think affects people in tremendous ways. What is even crazy making about it is like, you know, you can be someone like I have a master's, you can be someone with a master's, with a PhD, like a physician yourself. But then when it comes to your own family members getting sick and navigating our insurance system, it's such a form of depletion on top of already being a caregiver for someone that you love and trying to support them. So it it really is this sort of like you know, salt on the wound is what I sort of that's like the way that I refer to our insurance companies in America. speaker-1: Yeah, I th I think that's really, really well put. And I'm I'm curious, like, can you talk a little bit about like I love the term circle of care. I think it's a great term of like just the group around the person, around your dad, as that pain journey, as you mentioned, and then post cancer diagnosis, can you kind of paint the picture of the circle of care around your dad? And it sounds like you kind of stepped up into a lot of those roles to help coordinate the medical maze, an insurance maze with him, but I would love to just hear more about that. speaker-2: Yeah, the circle of care is a concept that I I think exists in many different realms. I first came to use that language around being a birth doula. Part of it is just a recognition that for most people they no longer live around their nuclear family. So as they are becoming a parent or as they are adopting a child, it it might not be their aunts, uncles, grandparents, cousins that are supporting them. It really is this. kind of broader concept of chosen family neighbors that become like a quasi-family, if if you will. For my father, our circle of care, I would say, primarily included my mother and I. And I would say also my parents' friends. My parents are part of this kind of strange cohort of American men whom were drafted into Vietnam and then came home. partnered with someone and then had a family. So my dad had these friends that he had been friends with since he was in high school, grade school even in some cases. Several of them had already died, but still there was a a group of people that were trying, I think, in many different ways to support my parents. But I will say that one of the one of the things that was difficult with my father Which very common when you are a veteran, is the resistance to admitting that you are in deep pain to others. So when his best friends would stop by, or sometimes when we were physically at a doctor's office for an evaluation, if the doctor said, Tell me about your pain, my father would sometimes say, like, well, you know, there's something there, but you know, like I'm gonna be okay. And then I would just feel like, you know, Dad, you just spent hours on the phone with me the other day telling me your daughter and how much pain you are. But now that we're here in this office, you're you know, you're not using that language anymore. Now you're using the language that you have a little bit of discomfort. So that also played into I think how much support and care that my father was able to get. But we did have People stopping by, people checking in. I think at one point our washing machine broke and one of my dad's friends stopped by to fix it because he might like being able to lean over something really was causing him too much pain at that point in time. So, you know, there were moments where there were other people that definitely supported my mother and I. speaker-0: I love to hear that. I frequently think about how we have forgotten how to be a community in terms of knowing our neighbors and building those relationships. This idea of showing up without being asked, you drop off a casserole. I in many ways I think we're losing that. And I hope that folks can recognize you can't door dash a circle of care. speaker-2: No, and in fact the circle of care is the foundation of our society. It it is what actually defines our humanity is being able to show up for each other in these threshold moments. And I think if we lose that we truly are losing parts of our humanity. speaker-0: So shifting gears, you have shared that you had a a complicated relationship with your family. And there is a lot that people carry from their childhood, from different aspects and chapters of their life. And when it comes to them caring for someone, it can feel really challenging and there can be some resentment. And so I'm curious how your relationship with your father and your family, how that came up through your caregiving journey and what tools you used to handle that. speaker-2: I feel I feel like to really answer that question we'd have to open a bottle of wine and stay up very, very late into the night. speaker-0: I'm coming out to see you. Just yeah. Let's do it. speaker-2: Yeah, but what I can share to begin with is that my father and I we were very close with each other. And my father was someone that you know, who was an alcoholic, whom I would say in in my entire life that I don't actually know him as a sober person. That wasn't something that he was able to do for multiple days in a row was to not have a drink. So it really affected our relationship, it really affected our dynamic. So while he was a deeply, deeply, deeply good human being, a deeply good hearted human being, a a really good father in many ways, he was also someone with an addiction that really affected his personality and really affected his ability to actually show up in my life and and in our family's life. One thing that I do find interesting and and to be sort of like a cosmic gift is that our relationship did become very challenged, primarily because of his drinking and because I lacked skills really around how to deal with it and how to deal with how it affected me. But I was very lucky that I found my way into twelve step meetings. in particular a meeting called Al Anon, which is you go to when you're in a relationship with someone who's an active addict. And it really helped me kind of reframe some things. It it really helped give me tools for how to take care of myself within the relationship. And that really helped to pivot the relationship that I do that I that I did have with my father. So one thing that I would say is that in the maybe like eight years before my father died, we actually had dipped into a really sweet leg of our journey with each other. So that that was a gift to be able to be in that space with him. I think if he had died ten years earlier, it would have been really, really, really, really hard for for both of us. Outside of my father though, you know, what happens in a family when there's active addiction is that it it affects everyone and it affects all the relationships in a number of ways. So I do have two older brothers, but we're not particularly close. Part of that's just because they're they're much older than I am. They left our house when I was around eight or nine years old. So I haven't lived with them since I was a child. So there's a lot of like not knowing each other, but there was also quite a lot of relational strain in the ways in which we all dealt with, I think, the element of addiction in our family and and how that affected all of us. And it certainly affected my father's cancer journey. My brothers and I do not historically have great pathways of communication or Any substantial examples of really agreeing on things. And so when my father was diagnosed with metastatic cancer, that really showed up. We all had very different views in what would be the best course of action and what was going to be done. Not surprising for me, the bulk of all the caregiving laid on my shoulders. I think, you know, some of that is just logistics because I at the time was unpartnered and I don't and I didn't have children at the time. So by default, most of my life has been a lot around supporting my parents in ways that my brothers didn't have capacity for. And while I logistically understood that, there's there's definitely you know, there were a lot of elements of resentment around hearing people's perspective. And opinions about what we should do, but not receiving any support from them around what's going on. Like nothing like that. So definitely there has historically been a dance between everyone and my family. And then I think when my father received the diagnosis, those dynamics that were already particularly difficult just became even more difficult as we had such Profoundly different viewpoints on what would be the best course of action for my father. speaker-1: That that makes a ton of sense and you just spoke so beautifully about like the the fact that your relationship was able to be in a much better spot that like as a result of the twelve step meetings, which are very near and dear to my heart as well. so I really am really glad to to hear about that. can you talk a little bit about the just the post cancer diagnosis like trajectory? speaker-2: The cancer journey after the diagnosis was a very confusing and a very frustrating one, in all honesty. My father, because he'd been in this intensive pain journey leading up to the diagnosis, had lost so much of his ap appetite. So by the time he was diagnosed in October, my father was about six two. And I believe by the time that he was diagnosed with cancer, I wanna say that he was around a hundred and forty pounds. So that, you know, really just kind of paints a picture that he was a very emaciated person that didn't have he didn't have a lot of like force, you know, like essence in him. So what the oncologist suggested was that we do everything. So the recommendation was to do palliative radiation in hopes that that would reduce part of how the cancer was affecting his pain. And then also start him on chemotherapy. It was on an oral chemotherapy. Renal was the primary source of cancer that then had spread to the to the spine. And it is true that in the literature, the form of renal cancer that he had does respond well to oral chemotherapy agents. But I felt very strongly that in my father's physical situation that he wasn't really a candidate for being able to withstand the effects of of chemotherapy. But despite the fact that I am the only nurse in my family and I was a hospice nurse at that time, my brothers and my mother wanted to follow the advice of the oncologist and wanted to push full steam ahead with the radiation and with the chemotherapy treatments. At the at the time my father was still, you know, totally with it. And when we spoke, he did feel that he wanted to do what his wife and his sons wanted him to do and what the oncologist had suggested. So you could say in a way that I got outvoted. And then just the treatments were really they were the beginning of the end. It really affected him. He was so weak. He was in pain, lost hair became even more emaciated, lost even more weight, lost even more of his appetite. I kept demanding and trying to get him more of a palliative consult on top of all of his treatments. But in small town America, that was difficult to do. That it just it was just it was a a mess. And then I would say by the end of December, it became very clear that none of the treatments had worked at all. And that he was going to die soon. And in a strange way, what happened was that he bec he became septic with an infection, was hospitalized. I had been trying to get my family to be open to signing him him up for hospice, but they were resistant to that. And then it was when we went into the hospital at the end of December that finally there was a physician there that said, Yeah, like this doesn't make any sense to give someone with a BMI. I think at that point it was like thirteen or fourteen chemotherapy. And I think that you are, you know, a candidate for receiving hospice care. And so for my family, hearing a physician say that finally then allowed them to be open to that. So then we left the hospital and and he entered hospice care and then he died two weeks later. speaker-1: my gosh. Thank you so much for sharing that. Just talking about the the frustration piece of kind of getting outvoted and having a little bit of like the white coat syndrome is I feel like a decent way to to think about it of like I'm gonna view this as an authority figure. And if the oncologist says that we need to do this, then we're gonna go along with this. And even like with your extensive experience. speaker-2: Yeah, it is. I I will say that I felt grateful for being a hospice nurse because exactly what you're saying, that power dynamic of of families, especially in a time of crisis, especially in a time where their own inner fears are really up, they you people really want an external authority figure. They really want an external physician with a white coat to tell them what to do. So I I feel that my experience as a hospice nurse kinda helped me have more compassion for my family that I I mean, I also felt a a tremendous amount of frustration with them, but it was mixed with compassion a little bit. speaker-0: Thank you for sharing that. I I don't know if I've shared with you we talk about the term the daughter tax a lot here. And speaker-2: And yes. speaker-0: there's been, you know, it's not a f foolproof sort of analysis, but a calculation that based on wages lost, you know, missed opportunities at work, not putting as much money into your savings or retirement funds, that being a daughter is could be almost, you know, three hundred thousand dollars that you lose. And I I have and it based on what you're sharing, that seems very similar. One thing that I I'm curious about I believe that the daughter tax actually starts earlier. And it starts with the little things like being the one to remember a Father's Day gift or whatever it might be. And even though logistically it sounds like you were the best person to step in and help, you were you were the daughter that that stepped in and did the things. And one of the things that I am trying to help more people realize is if you are you are paying that daughter tax already through emotional, logistical, and mental labor, it is not necessarily going to happen, but it's very likely that you are going to become a caregiver and your time and your finances are going to be pressed. And if you can do anything now, to get ahead of that in terms of planning or healthcare directives or whatever it might be that you should. Is is that something you relate to? speaker-2: I think it is a hundred percent, a thousand percent true. And I think it bears out in research, and I think there's so much cultural context to it. You know, I I think that of course, like we're speaking in generalizations, but you know, in general, women tend to be involved in more caretaking. So we are societally kind of pushed and nurtured. encouraged to step into that. And it's unfortunate because I think that our society does not honor in the same way that they honor other abilities. You know, I again, I think you and I could share a cup of tea, a bottle of wine, whatever you want to call it, and talk about that daughter tax for hours and hours because it is multi-layered. It is not just about the family that you're in. It is more about societal implications that have been going on for centuries. speaker-1: Thank you so much for sharing that. Like it's just how much falls on daughters taking care of parents and I don't think that there's nearly enough tools or support and as you mentioned, like societal value that's placed in it for how valuable it is. I wanna ask a question about just kinda as you think about your own journey as a caregiver, what would be advice that you would give to someone that is either just beginning the caregiving journey or is maybe a couple of years ahead and noticing signs. Like what what advice would you give them? speaker-2: Yeah, that's a that's a really beautiful question. And again, a very poignant one. I think one thing is trying to do a very clear assessment of one's own capacity before being clear about what the needs are. and and I think that that's like enormously difficult for most women. I don't I don't think that we are in in general really encouraged to do that. So it in some ways it's sort of like going against a lot of imprint for most of your life, what you have received. So I think that would be like a primary one is to try to get more clear on what your capacity is before you're so deeply and acutely aware of what the needs are. I would also emphasize, you know, this is a little bit based on what my summit was about last week. I would say to someone like, hey, listen, if you have a grandparent, an aunt, an uncle, a parent who gets a terminal diagnosis, it's not going to be uncommon that you end up in these kind of old dynamics with your cousins or your siblings or whomever it is. And that's not a personal failing. And I think it's really hard for people to not feel that it is a personal failing because you can feel like, You know, I've I've done therapy, I've read self help books, I've listened to the podcast, may maybe I've done the twelve step meetings, you know, I've I've learned about myself and about these things. How can it be that I am feeling as frustrated as I was as a as a young adult or you know, like as a teenager with my family? And I just would say like, just that's normal. Let it go. Don't feel bad about it, don't judge them for it. It is a Part and parcel of being a part of something where everyone is stressed out and everyone is feeling a little bit of anticipatory grief about this impending loss. And it's it's just deeply human. I think I would also try to encourage people to bring help in early, even if that is just neighbors who can mow the lawn or neighbors who could, you know. you may maybe this person lives in an apartment building, not in a house. So it's neighbors that could like pick up groceries. I would just begin to think of a community mindset and think of how others outside of the nuclear blood family can support the process. W you know, which which I think is like really difficult, especially if you're from a family with a lot of complication, asking for help is typically not something that you were taught. Or that the family really practiced. So I say these, you know, lightly because I I know I'm saying it like it's so easy, but you know, but they're they're not that easy. And then I would also just say when you step into a caregiving journey, try to connect with other caregivers. They get it. You don't have to say anything. They can just be in your presence and they can totally get why you would just flop your head into your hand. And just be silent, and you kind of don't even have words to express your exhaustion, your frustration, your sorrow. It's just, it's such a journey being a caregiver. It's doing and feeling both in extremes and being in the presence of other people that can really get that and really see you and really normalize it and you know, not give you any awful. Adajes, like, you know, you're doing the best you can, or, you know, I I hope you're proud of yourself, or any of those things. Like, I of course, like those are well-meaning comments and they come from someone's heart. But I think what a caregiver really needs when you're in the thick of it is just to be witnessed, to be seen and to be known that you are in a really difficult place and you're you're doing the best you can and you're trying to keep your head above water, sometimes not keeping your head above water. And just to be known and witnessed in that, I think can be really helpful for caregivers. speaker-0: Nicole, I don't I have no words. That was so beautifully eloquent and incredible advice with the perfect sort of asterisks of like, yes, these are the things to do. I'm not gonna sugarcoat it. This is hard. But starting early and and having this in the back of your mind, it it can help. speaker-2: Hopefully. Hopefully, yeah. Yeah. Well thank th thank you for that. And I mean honestly, kudos to the two of you for what you're trying to do and what you're creating. I I I think it is a it's very needed and if it's able to touch and reach people, I it like it surely will help because being a modern caregiver is not for the faint of heart. It is for the warrior heart. And any support you can get in that journey is is well worth it. speaker-0: Yeah. Yeah, we're we're really proud of what we're building and and our goal is to help people figure out the next step faster so that they can have more time with their loved one or themselves. speaker-2: So yeah. speaker-0: I could talk to you about this all day. I think at this point we're at like three pots of tea, a couple bottles of wine, some snacks. But I do wanna make sure that we we know where people can find you and connect with you and learn more about all the great work you're doing in this space and get more time with you. speaker-2: Yeah, thank you, Noelle. I hosted a free virtual and annual summit that's specifically around family dynamics and the end of life. And starting November 5th, I am offering a six week course, which is a much, much more in-depth journey. The course is called Navigating Family Dynamics at the End of Life. The course is designed both for death workers, so hospice nurses, end of life doulas, chaplains, and And it's also designed for people that are in the caregiving journey within a complicated family. People can find out about me on my website, gracefulfusion.com. speaker-0: Thank you so much, Nicole. I mean I cannot imagine a better first guest on Mortal Support and you you gave us a lot of mortal support today. Our guest today was Nicole Heibreiter. You can find her at gracefulfusion.com. You can find us online at Mortal Support. That's M-O-R-T-A-L-S-U-P-P-O-R-T.com, where you can also sign up for our newsletter. To learn more about Blaze, visit Blaze.care. Next week's episode will be all about my favorite topic: the daughter tax. speaker-1: Mortal Support is a production of Blaze, a free navigation platform for adult caregiving. This episode was made possible by our incredible producer, Odelia Rubin. Our original music was written and recorded by the talented Bess Rogers, brand designed by Matt Yao, and strategic support from Ali Bizell. And special thanks this week to Noelle's husband and daughter for eating their pasta in the bedroom so we could record this episode.