Um, the conversation project is exactly what we’re called, and we provide resources to help people talk about and share their wishes for care now and through the end of life. All of the resources we have are free, and we encourage people to talk early and often. 

Are you caring for others while working and trying to live your own life? Wondering how to find the time for your own health and happiness? Well, you’re in the right place. The Happy Healthy caregiver podcast, which is part of the whole Care Network, is the show where real family caregivers share how to be happy and healthy while caring for others.

Hello and welcome. I’m your host, Elizabeth Miller. I’m a fellow family caregiver, a care. Advocate, a professional speaker, author, certified caregiving consultant, and certified senior advisor. If this is your first time listening, thank you for being here. This is a show produced biweekly to help family caregivers integrate self-care and caregiving into their lives. Each episode has an accompanying show notes page. If you’d like more detail about the topics, products, and resources. We speak about or you want to see any of the related photos, you’ll find the show notes by going to the website happyhealthy Caregiver.com, and underneath the podcast menu, click the image or episode number for today’s show. The link for the show notes will also be in your podcast platform’s episode description. Now, let’s get to it. Let’s jump into this episode.

Before we get into this conversation with Patty Webster, I have a couple of things that I want to share on my own. First of all, I want to remind you that you can find Happy Healthy caregiver on pretty much all the social media outlets out there, but I will tell you that I have a personal favorite and my favorite platform is Instagram.

So I invite you to follow Happy Healthy caregiver on Instagram if you’re not already doing so. I would also like to thank our episode sponsor Rare Patient Voice. Did you know That you could earn cash in exchange for sharing your opinion. Well, rare patient voice or RPV helps connect researchers with patients and family caregivers for over 220 diseases and conditions. RPV provides the opportunity for you to voice your opinions to improve medical products and services. If you’re interested in earning some cash by sharing your opinion, you can join the RPV panel by going to rarepatientvoice.com/.

Happy Healthy caregiver. I read a book recently called The Blue Sisters by Coco Mellors. I read this for a book club book and I wanted to love it because you all know that I love things that are about sisters. I love my sisters, but I really felt like this book did not live up to the hype and it was even a Today Show read with Jenna Pick. Blue Sisters is a novel that follows three very different estranged sisters navigating the grief. Of losing their fourth sister. And as they reunite in the wake of their sister’s death, long buried secrets, unresolved tensions and complex family dynamics rise to the surface.

The story explores sisterhood, identity, addiction, and healing in the face of profound loss. I gave it 63 out of 26 stars for me. I particularly was not crazy about the audio narration for this particular book, and I typically again adore. Books about sisters, but honestly, I think this was more a book about the various ways family members cope with trauma and addiction and grief. And I realized also that long chapters are not my favorite reads, but I’m gonna link to this book because many people have liked this book, so I will link to it and you can check it out and see if it’s a fit for you.

I’m gonna bring in my favorite thing for this week, fresh flowers. Look, if you’re on YouTube. You can see how lovely this bouquet is. This was a bouquet that my friend Cheryl brought over. We had a dinner party with them, um, and my husband’s best friend from high school and his wife, and so she’s been bringing me flowers, which I love and I’ve been also buying myself flowers, but flowers are just a an easy way to kind of brighten up your day and give you joy. These smell so lovely.

I love all of the vibrant colors and it Feels like when you get a bouquet of flowers that you’re celebrating life, frankly, and we’re gonna talk about that in today’s episodes. Flowers make everyday moments just feel a little bit more special. And I had buy myself flowers on my 224 for 27 list and I’ll link to how you can create your 20 for 25 list if you don’t have any idea what I’m talking about. But why not buy yourself flowers? You can sometimes find them very inexpensively. I know we have a Kroger or Trader Joe’s, which is a great find to buy flowers, getting yourself a bouquet of flowers. You’re not gonna regret it.

I’d like to introduce our guest for today’s episode. Patty Webster is no stranger to caregiving. She helped care for her mom at the end of her life and now supports her sister, who’s the primary caregiver for their dad who’s living with dementia. In this episode, Patty shares how her personal experience fuels her passion for The conversation project, a movement helping families talk openly about end of life wishes, and she gets very personal about it, talking about how they have put this into place in their family.

We chat about why these conversations matter, how to start them, and how they can bring families closer and offer peace of mind. It’s real, it’s relatable and something every caregiver should hear, frankly. I hope that you enjoy this episode.

Welcome, Patty to the Happy Healthy Caregiver podcast. I think you are my first guest that I’ve had that’s living in Egypt. Well, thank you, Elizabeth, for having me. I’m glad that I’m, I can kind of represent over here. I’m just, I, I, I just want to tell you I’m just so honored to be part of this wonderful community that you’ve curated, um, through all of your.

Your podcast. So thank you so much for having me. Thank you. I know it’s been like a labor of love for 10 years. Who knew? Yeah. And if I’m being honest, so many times I thought, I’m done. I’m just gonna, you know, flip the table and kind of phone it in on my day job, and particularly when I was a working family caregiver, but I just didn’t. Really glad that I’ve, you know, hung it out and ridden the different waves throughout this because it’s so needed. I’m basically creating what I wish existed for me, so I hope that, I hope that this finds the people who need it today, um, in our conversations.

But we, we do kick off the episodes with um something from the Happy Healthy caregiver jar. This is stuff that I have collected, you know, particularly in those heavy caregiving years um that spoke to me and then I created this. a replica of this for my sister when we transitioned care, and I know you’re a sister, so like, it’s such a horrible feeling when you’re like, hey, here’s, here’s mom, you know, and, and we’re, now we’re in this interesting space now too where she’s basically transitioning care of my brother back.

um, he’s been kind of split between Michigan and Georgia, and so now it’s coming back my way. So, but that’s what we do, that’s what we do as families. So Anyway, this, let’s see, that one was all crinkled. Let’s get you a nice one here. Let’s see. It says, grace comes to those who have the grit to ask for help and a heart grateful enough to receive it. Grace comes to those who have the grit to ask for help and a heart grateful enough to receive it.

Three G’s there, grace, grit, and great gratitude or gratefulness. Yeah. Any, any thoughts on the asking for help? I don’t know if you can see this, but that actually brought tears to my eyes. Um, And I’m, I’m gonna try not to cry. Hey, I love that. And my sisters and I talk to each other about giving each other grace because caregiving is tough, um, and we are doing it because we love the person that we are caring for or or there’s something special about them. So I think it is really important that we, we, we give each other grace while we’re going through caregiving, but, um, but it does take grit and so it doesn’t mean that it’s something we don’t want to do, we want to do it, but it’s, it’s hard.

My sister, um, often says, this is something I choose to do, but that doesn’t mean that it’s easy. And learning how to really talk and communicate with each other is huge. So I, I appreciate that quote. Thank you. I’m gonna remember that. Yeah, it’s, I mean, I, I have another phrase that I say to myself and share with caregivers about grace is, you know, we also feel guilty, right? We feel guilty for a lot of things and I know we’re gonna talk about your situation and how you support caregiver.

Um, from afar, you know, guilt is, is a natural feeling because we want to be available and we want to do all of these things because again, we, we love these people. And so there’s nothing I can say on this podcast or on my speaking events or anything else about removing the guilt factor, but grace is really what I want to insert the other G word there. So, grace and gratitude, um. are, are great, are great things to help combat the guilt too. So, thank you. No apologies for teary eyes too.

Like, listen, I probably leaked Patty in every single episode. Like if people are watching me on YouTube, they’re like, man, she’s a softy, um, but I think we, you know, to be an empathetic, emphatic, I can never say that, um, person, like, it’s just part of, part of who we are. Tears are good. You gotta let the tears out because it does more harm to let them in. So I’m I’m with you on that one. I just say a leak. I don’t even like a little bit. Yeah.

We’ll share a little bit, Patty, about your, your caregiving story with us. And I know you’ve had a couple of different seasons of care. What do those look like for you? So, right, right now, we are caregiving for my, my dad. And, uh, I say we, but it’s really, because there’s different types of caregivers. And so my, my dad lives in Virginia Beach, and I live over here in Cairo, Egypt. My sister, and my middle sister lives with my dad and is caring for him, um, and she’s the primary care.

My oldest sister lives in Pennsylvania, so she’s about 6 hour car right away. And so she gets down there once a month or more often, and she’s also a remote caregiver, but a little, a little closer than I am. So I am a little farther away. My dad has dementia early to, I think it’s moving to middle stage dementia though, because uh we can see some shifts, and he also has a diagnosis of lung cancer. Um, so my sister is, um, chose to be at home with him and um is helping him out.

Uh, and a couple of years ago, so I, I am as a remote caregiver, I come in and I visit uh when I can. It’s only a couple of times a year, so it’s not often. Um, being so far away. And so, um, a couple of years ago I was visiting my dad and my sister back in the states and, um, when, when I was visiting, what I do and, and sometimes what us remote caregivers or out of towners do, and there’s also some other terms that, that we, we talk about the seagull effect and I can share a little bit about that.

But I was visiting trying to problem solve and offer what I thought was helpful advice to my sister. And we, we had a really nice visit. We had some discussions and I left and I came back home and I was doing some work with the team that I work with and all of a sudden it hit me like a brick. Oh my gosh, I’m actually being a seagull, and a seagull scenario is something we talk a lot about in the work that I do. And then I can explain that a little bit more if that’s helpful.

Yeah, go ahead and explain it in case somebody hasn’t. I definitely have experienced that in corporate world where, um, Yeah, yeah, you, in your words, you explain. OK, so, so a common scenario that we hear in the caregiving world and um the organization I work with is the conversation Project. We hear this a lot is what is termed the seagull effect, talking with hospice and palliative care folks, they use this term a lot, the seagull effect, and it’s basically what an out of town person, it could be a sibling, it could be any type of relative, but in an out of towner, swoops in for a visit and thinking that they know what’s best in the situation, upends plans for the person that is.

Being cared for, um, they often create very messy situations. So as I was mentioning it, if I’m coming in and saying, here’s what you should do, you’re basically pooping all over things like a seagull does, so they create a mess. Um, and so we call that the seagull effect when someone swoops in and then they leave and they, and they go. And we teach about this, we’ve created short video about this scenario, and all of a sudden I realized I’m like, oh my gosh, I am, I’m the seagull.

I have swooped in. I’ve dumped what I think is good, and I left. And it just made me realize that Maybe I need to approach my role as that remote caregiver differently in order to better prepare and better listen to my sister, who is the primary caregiver. So did you realize it or was it, was it one of those sisterly conversations saying like, hey, Patty, I don’t know if you realize you’re doing this, but it was more me realizing after, but because we had had some conversations that, um, I found myself when I was there trying to problem solve for different situations.

And my sister was, was sharing. What she had been going through. And I cut her off in the middle of her sharing cause I like to cut to the chase, and she was what I felt like was repeating herself and, uh, I’m like, OK, let’s, let’s cut to the chase. And all of a sudden, I realized that she needed to be heard, and she, she was defensive because she wanted to be heard. Um, so we had, this was in the middle of a, uh, I think we’re at a CVS cause we were picking up some medication for my dad.

And I realized that she needed to be heard, she needed to be validated, she needs to be respected. And, um, and have my understanding that everything that she had been going through, this was her way to share, and I didn’t realize that. And so when I came home, all of a sudden I was like, this is what’s happening. And so we had conversations afterwards to say, OK, we gotta do it better. In the moment, I, I, I shifted my approach because I recognized that in the moment.

But it wasn’t until after and I called my sister. I can’t remember if I called her or we Texted often, we, we have different modes of communication because of the time difference is, is big. But I, I shared to her. I’m like, you know what? I’m like, I recognize that I was, I was kind of coming in and trying to problem solve and I recognized that wasn’t helpful for you. And I’m like, I know that this is something that could potentially help others. Could we maybe think and write something together?

So we actually, we, we kind of co-wrote a blog about our experience and tips from my Standpoint as a swooper and tips from her standpoint as a primary caregiver, and then tips for both, that could be helpful. And I think that was really cathartic for both of us. And when I approached my sister about this, I was extremely careful to say, I know you’ve got a lot on your plate, co-authoring a blog, you know, writing something with me may not be on your plate. So I drafted something and said, would you, you know, when you have time, if this is of interest, take a, take a look.

And she was really, really keen to do something because it was helpful for. Her as well. I mean, I love that you call, you know, the nickname is swooper as well. And I can relate to a lot of what you shared, Patty, because I’m like you, I’m a kind of a direct to the point type of person, cut to the chase. And what I learned as a certified caregiving consultant is another fancy way of saying like a coach for caregivers. That was always my worry when I became a coach is that I didn’t know if I’d have all the answers because caregiving is so Abroad.

And what I quickly learned through this program, and I’ll link to it if people want to learn more about it, is that it really is mostly about validating people and listening more than you’re speaking and validating their journey and, and what a great opportunity too for your sister. What’s your sister’s name, by the way? Suzie. I have a sister, Susie, who was the primary caregiver for my mom. Your little sister’s name or your other sister’s not Annie. Wait, what did you say? Annie Annie? Yeah, yes, my oldest sister’s Annie.

That’s my older sister Susie, younger sister Annie, me in the middle. I’m Elizabeth, yeah, OK, so freaky. I have to tell you that when I was younger, I don’t have a middle name, and so my sisters both have middle names. So it’s Anne Marie. So Marie is actually her first name, but Susie has a middle name. I didn’t have a middle name because my parents had a hard time figuring out what to name me. Um, so I used to make up a middle name when I was younger, and I told everyone my middle name was Elizabeth.

And so I actually got a gift from somebody, monogrammed pillowcases that said PED because my maiden name is Divine, so it’s Patricia Elizabeth Divine. And so then we’ve got a lot of connections. That was off on a tangent, your chosen middle name. I love it. I love it, but that it’s so interesting. But what a what a great way to give Suzie this opportunity too, because I had no business starting a business while caregiving and working full time, but I really felt like it was helping to process it and kind of taking this yucky situation sometimes and paying it forward or making something, um.

That other people can use out of it. I think, I love that. And I, I did find the blog post and so I will link to that and share that. What were some of the things that stuck out to you? I know we talked about the validation and the listening, and those are things that you can still do from a distance, right? 100%. The, the listing was the biggest piece, um, and really listen to understand, not to judge. I think for any, anybody that’s, that’s also, sometimes it’s hard.

Because we want to go in and tell and give ideas, um, but really it’s asking questions to say, what have you been going through, um, what’s happening, how about filling me in. So that, that listening piece is so critical. I, I think for us, that one of the big things was care just caregivers are also going through, you, you know this personally, other things that we don’t know about. All of us are going through something we don’t know about. So really understanding what Um, Suzie was going through as a primary caregiver, personally, and also as a caregiver.

So she had caregiving, um, things on her mind, but she also had a lot of personal things going on her minds. It, I think, uh, understanding what she’s going through, and on the flip side, we talk about that as well, because I have things in my own life that I’m going through that I don’t want to burden my sister who’s the primary caregiver with, um, but recognizing that each of us has something that we may, we may not be sharing, um, that’s influencing the way that we communicate with each other.

But I, I also think I think that um, uh, one of the biggest things for, for us is my sister when we come visit, her giving’s tough, and she didn’t want all of our conversations to be focused on the caregiving and the task at hand and all that. She just wants that break. And so we make a really big point to have take time for fun. Um, and for, for her, just having that mental break, um, and that mind going out to a meal is joyous. Um, that’s like a little mini vacation, she told us.

So being able to get out of the house, my dad can Be left alone. He doesn’t need, um, he doesn’t need caregiving 24/20. So there’s lots of periods of time where he doesn’t. And so we go for walks, we try to engage in activities that are fun for, for Susie when we’re there. Um, and we ask, and we, we talk about what, what is, uh, what do you want to do? And, and some of the deep conversations we had, uh, they’re over happy hours. Um, so she’ll get a blender out, mix some drinks, um, make a little cheese plate, and we can get, get comfortable to have some of the important conversations. Nice.

And when those are needed. I don’t remember, it might have been my first caregiver support meeting that influenced that discussion about even with my mom, like the relationship with my mom, that to not be all about caregiving, but to infuse some of these things, and that relationships too, but I, I definitely see where you’re coming from with the, with the sister’s relationships and my sibling relationships now as we share the care for my brother, that, you know, I talked to my Susie this morning and, and, you know, I could have easily gone into, I didn’t go to the workday program today, he got sick yesterday, blah blah blah like giving her all the caregiving related things, um, but I intentionally did not, you know, lead with that.

And so it’s like, well, hey, what are you doing? And we talked about her exercise, we talked about her upcoming trip and Things like that, and then it’s like, oh, and by the way, like, so that the intention of the call wasn’t all about, it’s honoring that relationship that we have as as sisters, I think is so important. And so, to lead with those, those things does take intention, because honestly, like I had just gotten off the phone with my brother and so it was top of mind, but to think about it a little differently.

I love that you’re focusing on your sister a sister and person first. Yeah, and then as necessary, a task at hand later. And so I think that’s, that’s kind of a big thing for us too. We found that when we were talking about problem solving, you know, if we come in with an idea that sometimes adds an extra task to their long list of to do’s and so it’s coming in more of saying, what can I help you with? What’s, what’s top of mind? be thought about.

I have an idea if you want it, but we offer something up back off if people don’t want those ideas. If if they want it, maybe they’re not ready to hear about it in that moment. Like, you know, it’s, it is a little bit of a dance, right? And I do think like the healthcare professionals are learning about the person centered care, and I think as home caregivers, family caregivers, we also have to Um, think about the person being the, the caregiver, not just the, the care recipient, because so much has changed, changed in their everyday life.

Like, what a sacrifice, you know, the, the sisters who are showing up are making, for sure. What does your remote support caregiver will look like for you? What brings you to Egypt too, if you don’t mind me asking? Oh yeah. Is that your job or, um, we’re here for my husband’s job. We are posted here in, uh, in Cairo for his work, um, but I’m extremely fortunate that I’m able to. Take my work with us. Um, and so I, I continue to work here, but I work mostly on US based projects.

So it’s, um, yeah, and now that is a nice flexible flexible gift for sure, for sure. Well, we’re we’re talking about work, you work for, I know it is the conversation project is kind of what I’ve referred caregivers to, but it’s part of a bigger umbrella of tools, correct? Yes, so the conversation project is a public engagement initiative of an organization called the Inst for Healthcare Improvement and so we’re, we fall under IHI, uh, the acronym, but we are, um, the conversation project is exactly what we’re called, and we provide resources really we, we provide resources to help people talk about and share their wishes for care now and through the end of life, and we provide all of the resources we have are free, but we’re trying to help people talk about their values.

So it’s not, we take the medical and clinical out of it, um, and we really help people focus on what matters to you, not what’s the matter with you. Um, in terms of that clinical side of things, but what really matters to you, what’s important to you in your life and in your health, and we, we are, um, the conversation project is exactly what we’re called, and we provide resources, really we, we provide resources to help people talk about and share their wishes for care now and through the end of life, and we provide all of the resources we have are free, and we’re trying to help people talk about their values.

So it’s not, we take the medical and clinical out of it, um, and we really help people focus on what matters. to you. Uh what’s the matter with you, um, in terms of that clinical side of things, but what really matters to you, what’s important to you in your life and in your health. And we help, we encourage people to talk early and often, as you age or as your health condition changes or as your family situation changes, you may actually uh change your wishes, and we encourage people to talk about it often.

Um, and we really want people to uh to think about this and talk about it before a health crisis. It’s a way to have a say in your healthcare, um. And be in control of a situation that often is, is not, it’s out of your control. We never know what’s going to happen. And so the resources that we have try to make it easy to jumpstart conversations and so we have icebreakers, we have guides to help people think about what’s important to them, help plan and talk about what’s important to them.

And so, um, we are really all about encouraging conversations to, to be more of a relationship builder, and, and we, we take end of life out of it because it’s really about life. Living, and it’s really how can you age well, how can you live well, and what’s really important to your life. And that can inform if someone, an accident can happen anytime. Uh, we know like during COVID things happen, and mortality was, was really smack in front of people’s faces, and we know something can happen any time.

So it’s not necessarily a conversation for end of life. It could be an emergency situation. If you can’t speak for yourself, who’s gonna be the person, who’s your person that’s actually going to speak on your behalf. And so we encourage people to pick a healthcare proxy and talk to them about what’s important. So that person can understand what your values are. So any clinical or medical decision that has to be made, you pair your person’s values with the expertise of the clinical team with the medical decisions, and that can be, that can help inform people on what decisions to make.

Yeah, it certainly gives peace of mind, and, you know, especially in families where everybody’s got opinions on, you know, what needs to happen. Do you do this, Patty, in conjunction with working with an elder law care attorney, like, Getting the paperwork and the things done, we, we don’t, but many of our community groups do. So the work that we do is we provide the resources we provide public awareness and get the word out there how important this is and that anyone can do this. Um, we also work with a lot of communities, so groups have said, I really want to take this to my book club, so it could be small.

I wanna take this to my county or I wanna take this across my state. And so we work with a variety of community organizations that are using our resources and adapting our resources. To their community because you all know your community’s best and some of those groups are pairing our resources and pulling in state planners or pulling in legal um folks and so you, it, it, it goes very nicely with, with, with the legal side of things it also goes really great with all the healthcare side of things.

We also have professional groups um that we work with, not just the state planners, but other groups that are legal firms or or other professional organizations that see that how important this is for their employee and so bringing This to most most employers are recognizing that our employees actually are caregivers. And so employee assistance programs are saying let’s bring this in and bring some of these resources in. So we don’t necessarily work with all these groups, but we support we provide resources and we learn a whole lot from groups that are doing this across the country.

It’s such a great resource. I mean we’re not good at this, right? We’re not good at talking about um I know it’s, you know, about how we want to live out the, you know, live well and age well, um. And, and these are great tools that you provide. If someone’s listening that’s like a family caregiver, and they’re like, I’ve tried to have these conversations, you know, I’ve tried to bring up these things with my, my person or what are some tips that you all have or like, what could that look like, these little mini conversations so that it’s not this like overwhelming thing that people need to do. Yeah.

So, first and foremost, so I would first encourage you to, for folks to actually take a look at our resources because we have Some stories that people have written over time and every person’s gonna be a little bit different on what’s gonna work. But the first thing is, is to, we encourage people to actually, we, we talk about walking the talk or walking the walk. And so think about what you would want and think about what’s important to you. And so we have a conversation starter guide that you can walk through.

Sometimes it’s easier to actually say, hey, I’ve been thinking about my, what, what’s important to me. I’d like to share a little bit about what You are, can we have this conversation? And then you can ask about their wishes. So sometimes it’s easier for someone to talk about their wishes if they hear first what is important to you. And so we have a guide that you can go through and we just have open-ended prompts that people can think about what, what, what matters. I would say this, this podcast is an incredible opportunity to say, you know, I was listening to this amazing podcast.

Happy Healy caregiver really gave me some ideas that I haven’t really shared. What’s important, what I might want in terms of my healthcare wishes. Can we, can we sit over a cup of coffee next week? Or I’m gonna, um, if it’s someone who doesn’t want to do this in person, maybe you send an email to them and say, I learned a lot of really great stuff. I’d like to share it with you. Can we, can we talk about it or you can send over an email or you can um set up a Zoom conversation, you could set up a face to face conversation.

But using this podcast is a great way to break the ice. If you have someone who you’ve just gone through something, if you’re a care. or maybe you, you had been a caregiver for someone else in the past, um, that is no longer here. And stories from people who have died or stories of that you’ve heard from others sometimes opens up a conversation. So you might have seen something in the news or you may have watched a movie. That’s also a good way to open up. You know what, I saw this the other day and it made me think about, I don’t know if I have to speak up for you, what you would want and what’s important to you.

And you’ve always been there for me. Would you be willing to, to talk about this? We suggest you don’t throw it on people right away. You can give them like some time to like set up a conversation. Depends on that person. Sometimes people are like, yeah, give it to me I’m right at the moment, um, but there’s lots of different ways and we have um lots of Themes and we have a new blog that we just put together different themes. So if you’re a caregiver or someone with dementia, we’ve got some stories that might resonate with you.

Uh, if you’re a caregiver of a child that has serious illness, we have a guide and we’ve got stories for that. And so there’s a lot on our website and I’ve got a ton more stories, but I Yeah, well, we’re we’re gonna link to that and you’re right, every situation has a little bit of a different nuance for, you know, someone that’s living with dementia or like you said, a child with a serious, serious illness. Was there something, I’m assuming you’ve gone through the process. Yes, yeah, so.

Was there anything that surprised you about what it revealed, your values, or? Um, I don’t know if there anything surprised me, uh, but it was actually really important and I’m so glad to be doing, doing it. So, um, our team at the conversation project, we have to walk the walk as well, so, um. We, I, I have the conversation starter guide. I got one for my, for my husband. You can, you know, print it off your printer at home, and I said to him, I’m like, let’s go through this together.

We took our own, our own self time to walk through the guide, answer the questions, sat on the couch and over a glass of wine, and we started sharing some of our answers. The guide is a prompt, so that not everything’s And the guy, but it helps kind of spark some conversation and then we had a free flowing conversation. And nothing that I chose surprised me because I’ve kind of grown up hearing about this. My mom, we, we kind of dubbed her the conversation queen because she was very open over the years talking about her values and what was important to her.

In fact, like anytime my sisters and I, we got together with her, she would bring it up and we’re like, Mom, you know, At first, we, she would bring up kind of what she wanted at the end of life, and we’re like, you’re not gonna die. Oh, like, so like any, any, any kid, no one wants to hear about their parents’ mortality. No one wants to hear about mortality, as you mentioned before. But my mom shifted her approach and the way she talked about it. She actually started talking about what was really important, what really, uh, made life worth living for her.

What was her worst nightmare if she got into some, uh, into some scenario. We knew how important it was for her to have her mental capacity to be able to have, to be able to, um, To parent in, in a certain way and be really engaging in conversations. And so she started sprinkling these conversations in, and we didn’t realize how important it was until um she suffered a stroke at age 73, um, which for us was really young. My grammy, her, her mom lived until she She was 106.

Um, and, um, my grandfather was 94. We have a lot of longevity on that side of the family. Um, and when my mom had a stroke, she, she literally lost her voice. So she suffered from, uh, aphasia, which is a condition that you can’t, you can’t speak. And so, um, the first stroke she had was, we were moving towards recovery because it was what we were, we were told a good stroke and she could have a full recovery, was just gonna take a lot of time. But we needed to enact her healthcare proxy.

And so, my sister was her proxy. I was the backup um proxy. And so we were making health decisions on behalf of her. Um, 3 weeks later, uh, she suffered another stroke and it was bigger, um, more devastating and on the other side of her brain. So the conversation shifted about, um, what, about quality of life and um it was no longer necessarily a recovery conversation. And um I remember the neurologist saying to us, um, Um, you know, we need to talk a little bit about your mom’s wishes.

And I was like, oh, my, my, my mom was very good. She had an advanced directive. Um, she was very good with the documentation. And he said, yeah, he’s like, oh, he’s like, I actually don’t like those documents. And I was shocked because I’m like, you don’t like an advanced directive, like this is, you know, planning, planning documents. And he, and he finished his sentence, he said, in the absence of conversations, because oftentimes, what’s on paper, if people haven’t talked about it, there’s more nuance. And a light bulb.

up in my head, and I said to him, like, my mom’s been talking to us about this. And so I didn’t until that moment that all these conversations she had to us about her values, she was laying the groundwork if we ever had to make these decisions for her. And we were so lucky that she had those conversations with not just myself and my two sisters, but she had those conversations with her siblings. And so we were actually all on the same page. So I knew how, telling a long story, I knew how important this was.

For her. And so I, that experience going through that with my mom made me realize when I was going through this with my, with my husband, I, I knew what I wanted because I knew what I experienced this firsthand. And with my mom, it didn’t make, it didn’t make her, her death anymore. And so we, we chose hospice, um, we chose what we knew what my mom would want, and we knew what quality of life looked like for her. And so, uh, the decisions we made, we knew that’s exactly what my mom would have, and, um.

The grief and the death was, didn’t make it that any harder, but it alleviated, we were allowed to grieve for the loss and not second guess and doubt our disregret. Yeah, um, and so that was so important and I said to my husband and my kids who were, who were reaching adulthood at that time, we need to talk about this now because this is so important. I just I mean it’s, it’s, I mean, I’m taking, I’m learning here too, Patty, like I’m, I’m we we’ve got all the I’ve got the check marks next to all the paperwork because again, like, you know, I’ve lived through this with my parents.

I was grateful that they had, you know, a trust and all their documentation kind of buttoned up and things, but I know what you’re saying too about the nuances, like it’s not so black and white sometimes of what, what’s, you know, what’s going on for like in my dad’s situation, he was intubated 4 times, you know, and he, you know, would that, was that, you know, what he, what he wanted and he certainly did the 4th time. On my mom’s request, you know, when she was in the room asking, asking for that, but, you know, and my mom was certainly wanted to, the pain management was, was big for her.

So, I have lived through that, but I don’t know that we had like specific conversations about it. And now with my husband and I, like, we’re never too young to kind of get our, our ducks in a row here, especially if we own property and we have kids and, and things that are gonna kind of inherit some of these decisions and caregiving potentially. So I do think though that there’s probably more conversations that need to be had. I mean, we joked about some things like, you know, I was a big scrapbooker years ago and I love family photos and I’m like, something happens to me, you’ve got to bring all my photos to my memorial service, and I want people looking through them and laughing and sharing stories and he’s like, I’m bringing all these albums and I’m like, oh no, you are, because I’ve told all of these people that this is happening.

But I think those kinds of things is the Um, are important, but, yeah, great idea to kind of print out the conversations and You know, I’m thinking like I have a sister’s weekend, like I would love to know kind of some of their thoughts or, you know, not to be morbid about it like you said, but yeah, can we just pick a couple of these prompts over cocktails? Well, and that, and that’s the thing like, and I love it over cocktails. There’s a group that we work with that does, um, there’s a group that does Death over dinner, that’s a, they have resources to have that conversation.

Um, there’s another group that did a spin-off on that, uh, Death Overdrafts. So conversation over, you know, at the beer, have having a draft beer. And so there’s you have to figure out what’s, what’s gonna work for your people. We had a, we had a group, a woman once who said thought Thanksgiving would be a great time because her whole family was, was gonna be gathered around. And so she actually said to her family, a dessert time, which is, you know, dessert at Thanksgiving is, is pretty, pretty special.

I mean, I, I know for our family that’s what we, you know, we’re waiting for the dessert. She said, no pumpkin pie until you tell me how you want to live and how you want to die. And she had conversation starter. And so that worked for her family, that would not fly for a lot of people, um, and so you have to think about what actually is, is gonna work. And we, we, you know, suggesting it’s not, it isn’t about death. It really is about living. And so what, what makes living and life special, and when you start with conversations like that, that’s, that’s a little bit more accessible and starting with some of the, the positive emotions that, that can bring, um, and it also does help bring folks together.

Um, and, and bring people closer. Yeah. How have this, you know, with your dad’s having dementia, like is this something that you all have had with him, or is it still happening with him? Yeah, so, um, my dad is the opposite of my mom, and he hates having these conversations, like, absolutely hates, um, and the reason for you. Yeah, like 100% different. Yeah. And he He, he’s the reason for him is he’s, I, I think, is that he’s had a lot of loss in his life. Um, he had his, he lost his parents at a young age, his mother first, then he had a stepmother and a father.

He lost both of them as well. He lost his brother at a young age, so he’s been through a lot. He’s had a lot of loss in his life. And so he just doesn’t want to talk about this. So we had to approach it differently. And we approached it before he actually had the. Diagnosis of dementia because of what we went through with my mom. My parents were divorced. Um, they still have a good relationship, but they were, they were divorced at that time. But he, you know, we, when, when my dad, when he, when a daughter comes to him and says, Dad, can you help me with something, he will drop everything and say, absolutely, because he would do anything for his three daughters.

And so that’s the way that we approach it like that. I really It’s really important. Can you help me with something? So he said, OK. And so what we did with him is, um, because this is kind of this is my job and my role in the conversation project is, is around this for my sisters and I, that’s kind of my role in the caregiving is that, hey, I don’t mind bringing this up. I don’t mind starting these conversations. So that’s kind of my role. Each of us has our own strengths and our own roles, and so that was mine.

And, uh, so I approached it with him and we approached it together as sisters multiple times. And so I said, I’ve got a guide. Can you, can you help me think about and, and kind of get this down. So we, we approach it in stages. So I offered the guide to him and said, fill this out and next time I come visit, let’s talk about it. So we, we did it in stages. And so he filled out the guide, we sat together and he pitched it over to me.

He’s like, OK, I’m done. And, and I’m like, can I ask you, can I Ask you a couple of questions. He’s like, 2 questions. And so I had to pick my questions carefully to, so I read through what he put and I asked my clarifying questions, and then he started talking about, um, kind of what he went through with his brother, um, Jimmy. And so his brother died um in in his 20s. He had diabetes and had insulin shock. And he shared some stories that I had no idea that what he and his sister and his older brother went through and, and they had to make decisions for his brother.

Um, uh, end of life decisions for him, and I had no idea. So, as my dad started sharing that story, he then moved and started sharing stories about my cousin who had, um, who had a, a serious health condition. And so those stories from my dad was the way for him to say, you know what, because what we went through, here’s what I want. And so he shared with us based on, um, the people in his life. And so, So that was really important. When he, when he got his diagnosis of dementia, we sat down again to actually talk, and you can still have conversations at different stages.

The conversation’s different, and we have a guide for that, and it talks about what you can, can, can’t do at different stages. But we sat down again because again, wishes can change, um, and his doctor had wanted us to Uh, talk about a DNR and is this something of interest? Cause my dad had made it very clear at this stage. He’s like, I don’t want any more medical, and he’s like, I’m done with doctors. And so with the lung cancer, he was like, I don’t want anything.

He’s like, no, I don’t, I don’t want to see a doctor. And so we clarified some of that with him. Make sure we understood what he meant. And we sat down with that DNR and said, OK, you’ve talked with the doctor about this, and we had to remind him about the conversation at the medical appointment. And it was pretty quick because it was, it was very, very clear that he’s, he’s just wanting to sit, sit in his house, be left alone. He wants quality of life, um.

And what that looks like, you know, it’s different for everybody, right? Like some people, if they can, you know, watch the Braves game and, and enjoy a meal, you know, through their mouth, that’d be fine. And other people, maybe they want more out of that. So I love that the conversations are, are unique to people. So we have to have them. You’ve inspired me, Patty, to, to print them out. I’m thinking like, I haven’t had them with my brother. I haven’t, you know, um, he’s neurodivergent, so probably would use the dementia one specifically for to kind of guide me there.

So yeah, you’ve inspired me and hopefully you’ve inspired some people that listen to you. We’re going to link to all of the the conversation project things there. I’m gonna switch gears on you a little bit and talk about your self-care. Like, what are you doing to take care of you, Patty? Oh yeah, well, so I have it a little easy because as a remote caregiver, I can switch off and, and you know, we talked, you talked about that guilt, and so I, I do have that guilt manage the guilt, yeah.

Uh, it’s a good question. Well, I keep connected to my sister and make sure that she knows that for whatever, whatever she needs that we’re here for her. And um that, that communication piece for us is really important. It’s, it’s hard because my sister’s really busy with her own self-care and my dad’s care, and so sometimes communicating is not something that’s on the top of the plate. So we’ve devised different methods to communicate versus text versus audio message. Um, FaceTime if we can, um, uh, I think those, those trying to actually talk with primary caregivers on what’s helpful for you and then create that.

but self-care for me, I, you know, I’m, I’m a big keep moving. I, I listen to one of your podcasts. You mentioned Pickleball. I’m a pickleball player. Nice. That’s, that’s a big thing for, for me, and it’s really like surrounding yourself with people and activities that bring you joy. I think the laughter is one of the most important things. And in the work that we do, we actually have, have videos that are humorous and light, and we’re not making, we’re not making light of end of life or light of death, but we’re making it accessible and we’re making it easier for people to have these conversations.

And so laughter in the caregiving, I think is so important and really making sure that you’re Sending a joke, finding something, don’t take yourselves too seriously. My sisters and I send, you know, crazy text messages to each other to just keep it light, and I, I think that’s so important. Yeah, we have some, a good thread on my Instagram with my, they’re my sisters, but they’re also like first cousins and when you’re a daughter that’s over 21, you’re also in, in, in the sisters group. But yeah, we, we share some funny videos through Instagram and stuff.

So you need these people who are kind of curating the content and And putting it out there for you so that you can have a quick laugh. And then of course, you know, my book club ladies, they’re, they’ve always got some good ones. So yeah, grateful for those people who are kind of, you know, surfacing the memes and the funny stuff to kind of bring a smile to our face and remind us that it’s not, not every day needs to be so weighed down and heavy. Yeah.

And you know, what it comes down to is we just want the best for my dad. We all want the best for our person and when we know that we’re together with him and we, we Cherish the time that we have with them. Going back to their, your quote, like, we give each other grace. Like, I, that’s the one thing that is caregiving. You have to give each other grace because it’s, it’s hard. It can be hard. But that doesn’t mean that it can’t be rewarding. Uh, and so we’re just so grateful that we are able to do this together.

We’re, we’re grateful. I’m really grateful for my two sisters because they’re really, really doing the caregiving. And my, my sister who’s with my dad, obviously the primary, my other sister, she’s, she travels 6 hours back and forth. She’s a teacher, which is 24/7. Um, so I’m just so grateful that they’re there for my dad and, and with my dad and, um, and that we all get along and so yeah. You mentioned earlier, like everybody has their different strengths and weaknesses, so focusing on the strength, strength part of it, I think it’s important to kind of capitalize on those and, and then we all have kind of different energy at different times too.

So I too echo what you’re saying. I, I did a podcast recently with my sisters, Susie and Annie, Patty, so we have to check out the Sister Power episode. I saw that I haven’t listened to that one, but I was like, this is great that you’re you’re bringing your sisters on, so I will listen to that next and. Yeah, I gotta tell you as well, like, give yourself grace. If you haven’t had these conversations, that’s OK. And, and there’s plenty of opportunity. And sometimes there’s not the time.

We never want to force these conversations, so don’t feel bad for anybody who hasn’t had these conversations. There’s, there’s always time to do it. We always, we do say it’s never, it’s always too soon until it’s too late. So you don’t want to delay the conversations, but you also want to make sure that it’s you’re set up. Yeah, yeah, sprinkle them in, sprinkle them in here and there. No. Too overwhelming for sure. I want to ask you a couple of questions for my, my book is the Just For You a daily self-care journal.

So I bookmarked a couple pages here today. What’s your favorite time of day and why, Patty? Favorite time of day sunset, dusk, um, when kind of the day kind of winding down and I can sit and watch the sun, just kind of take a big sigh of relief and breathe. I think sunset to me just brings so much joy. Maybe sunrise would, but I’m not a morning person, so that’s not, not quite the same, but it’s basically a time for reflection for me. I could just stare at a sunset forever.

I said to my husband, whenever we, uh, figure out where we’re gonna go next and retire at some point, I need to be able to access and see the sunset all the time. That’s a value of yours for sure. That, yeah, it’s good that we had the conversation. OK, what about, what are two of your go to healthy snacks? Two of my go to healthy snacks. OK, I’m trying to think what I have in my kitchen right now. So, um, I have walnuts, roasted walnuts, like I just put a little olive oil and roast them a little bit with a little pepper.

Oh, you roast them? Yeah, I take the raw walnuts, for some reason I mean you can get them like that, but I just like doing it. I think it’s the active like it’s probably you know what the ingredients are in it then it’s you can kind of control. Um, that sounds yummy, and I just picked up some yummy olive oils from this place nearby that does the infused ones. So olive oil is critical, like the, the real good olive oil that makes such a difference. So yeah, I totally, I’m all into the olive oil.

Um, so that’s that’s one. My other healthy snack, um, what did I have today? I go, I do smoothies a lot, because I can throw a lot in a blender, so you can throw the vegetables in peanut butter. I’ve made some really bad concoctions because I often like, what, what can I throw in there? But yeah, there’s a smoothie and a milkshake. Yeah, yeah, that’s OK. Yeah. Yeah, I love, you know, smoothies are definitely a go to for me, and I, we think about them as a breakfast thing, but why not have a smoothie at whatever time of day.

Well, and, and, you know, there’s some good like putting in rocket or arugula and avocado and kind of making that green veggie smoothie. I’m, I’m all about that. Coconut milk is always good. Um, yeah, there’s, you can, I think you could do maybe any time of day. I don’t know how healthy it is, honestly, but I think like with adding that ingredients, I feel like it’s healthy. Nice, nice. OK, one more question for you. Um, what’s a life lesson that you believe needs to be taught in school?

A life lesson. Well, I’m gonna, you know, you know, I’m gonna say this because this is the work that I do, but, uh, a life lesson is that, uh, It’s so important to actually talk about life as a full circle. So death is part of life. Uh, and I think the more that we can normalize those conversations really starting early, and a lot of people are so good at this, um, and talking with their kids and having kids participate in death rituals, I think that’s really important.

You have to know what’s, what’s, what’s right for your kids, but as when you’re talking about life, we can have people understand. That it’s a natural cycle and that to not fear death, I think often you just have to really talk about what is life and living and how important that is. Um, and if kids can see and feel and understand what it means and, and try to make it a little bit easier, it, it’s never gonna be easy because we’re always losing someone is, is always gonna be hard, no matter what, what age and what stage they are.

But if we can talk about it and understand that this is part Um, part of, part of our life cycle, then I think that would be um one of my goals. Yeah, it would be so, it would be so interesting if we did that, you know, in early, early school years, early education years, and then it’s, it’s just part of life, you know, part of, part of talking about it. Um, maybe then we wouldn’t be kind of in this predicaments of avoiding the conversations. Where do people, or do people connect with you, Patty, and where do they, can we guide them, you know, to learn more about the, the conversation project and the work that you do?

Oh yeah, I’m, I’m so happy to connect with anybody. The Conversation Project’s website is basically the Conversationproject. org, um, so you can go right there. Folks can connect with me on Email, um, I’m, I’m P Webster at IHI.org. Um, you can also find me on the Conversation Project website. I’m more than happy to, to help anybody, guide folks to resources, share stories, and I definitely encourage folks to look at the website cause everything’s free. There’s so many um really exciting stories and really heartfelt stories on there, and sometimes just emailing someone a story and say, hey, this, this opened up my eyes.

Uh, can be a real icebreaker. Amazing Stories are definitely a form of advocacy, and you cannot beat free. And our things, everything you can adapt to whatever works for you. So, and there’s a whole ton more organizations out there, so we are not the only ones. There’s some great resources. So if ours don’t resonate, we have links to other resources out there. So there’s games, there’s this podcast is such a great icebreaker and opener and So I’m just so grateful, Elizabeth, for everything that that you do and sharing your story with me today.

Well, thank you for coming on with me today, Patty. And yes, learned a lot from you and it’s, it’s, you know, you don’t know whose lives you’ve touched and where this is kind of going to infiltrate into different areas. So that’s what I love about the power of the podcast. So thank you so much, Patty, for, for coming on today. Thank you, Elizabeth, it’s been such a pleasure.

If you’re a fan of this Happy Healthy Caregiver podcast, then you’re gonna love Confessions of a Reluctant Caregiver podcast, which is also part of the whole Care Network family.

Join sisters JJ and Natalie, who offer a candid, unfiltered space to confess the good, the bad, and the ugly of being a caregiver. From heartfelt confessions to insightful guest interviews, they’ve got it covered. You’ll laugh, cry, and everything in between. Tune into the Confessions of Reluctant podcast on your favorite. Podcast platform or visit confessions of a Reluctant caregiver.com. Thanks for listening to the Happy Healthy caregiver podcast on the whole Care Network. I hope this episode provided encouragement and practical tips to infuse into your life. You’ll find the show notes and all the resources mentioned at Hahealthy caregiver.com.

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