Planning with Purpose Through Life’s Final Chapter with Carol Robinson

View Podcast Disclosures here: http://bit.ly/4jWGPF4

In this episode of Women & the Businesses They Own, I had the honor of sitting down with Carol Robinson, founder of So We May Know—a company dedicated to helping individuals and families navigate one of life’s most important, yet often avoided, conversations.

Carol’s work goes far beyond traditional documents like a Health Care Power of Attorney. She helps clients thoughtfully communicate their personal wishes, choose the right advocate, and create clarity for their loved ones during life’s most difficult moments.

In our conversation, we explore:
• Why end-of-life conversations matter more than we think
• The difference between legal documents and truly being understood
• How to choose and prepare the right advocate
• The peace of mind that comes from clear communication

This episode is a gentle but powerful reminder that planning isn’t just about preparation—it’s about love, dignity, and giving those around us the gift of knowing.

Here’s what we are meant to take with us today:
When we take the time to share our wishes and have the conversations that matter, we replace uncertainty with clarity—and fear with peace.

Tune in, reflect, and consider starting a conversation that could mean everything to someone you love.

You can reach Carol at carolfrobinsondnp@gmail.com

#WomenInBusiness #Podcast #EndOfLifePlanning #Legacy #PurposeDriven #WomenSupportingWomen

www.mysummitwealth.com

This podcast is presented by Summit Wealth Partners, LLC, a registered investment adviser that only conducts business in jurisdictions where it is properly registered or is excluded or exempted from registration requirements. Registration as an investment adviser is not an endorsement of the firm by securities regulators and does not mean that the adviser has achieved a specific level of skill or ability. The firm is not engaged in the practice of law or accounting.

Transcript

SPEAKER_01 0:03

Welcome to Women and the Businesses They Own, the podcast where we inspire and we explore the journeys of remarkable women who are building businesses with purpose, passion, and impact. Each episode shares the story behind the work, the challenges, the lessons, and the courage it takes to create something meaningful. Today I'm joined by Carol Robinson. Carol is the owner of a business dedicated to helping individuals and families have some of life's most difficult but important conversations, planning for end-of-life medical decisions with clarity, dignity, and compassion. It's delicate work, but Carol approaches it with empathy and wisdom and a deep respect for each individual's voice. Carol, thank you for joining us today. And as we begin, please tell us a little bit more about yourself, both personally and professionally.

SPEAKER_00 0:57

Okay. Thank you, Sherry, for inviting me to this interview. It's always a pleasure to work with you. Thank you. Yeah, so a little bit about me. I was actually born and raised in Grand Rapids, Michigan, and I am the third of four, so I know how to, you know, get in the elbows with the siblings there. But middle child. Middle girl, yeah, but third of four. But I was born to a dad who was an international marketing consultant, and my mom uh originally was full-time mom, but then went into public relations and was very successful, um, kind of helped break the glass ceiling in in an executive capacity. So from both of them, I learned from the ground up about preparing for the career I didn't even know I'd have of an in a administrative entrepreneurial part of my career. Uh, I did move to Arizona when I was 18 to attend Arizona State University.

SPEAKER_01 2:01

Oh, all those ASU, is it ASU fans?

SPEAKER_00 2:04

ASU. ASU. Sparky, go Sparky. Yeah, we are not U of A Wildcats, we are the ASU Sun Devils. Okay, all right. Um and my original the way I chose it, um, my dad was living out there, but also I had really severe asthma as a kid. It was life-threatening at times. And the answer was to get out of this type of environment and get into the desert, which at the time had very clean air and it was a great move for me. Um, I but I didn't plan on staying there. I was gonna go to school and come back, and instead I met Mr. Wonderful, and Mr. Wonderful is a Phoenix native. So um, you know, we uh eventually got married, and uh I we always laugh because the first date I ever went on with him is he took me to church because he said, and I had the mouth of a Steve Dorf, longshoreman. I don't see that about you. Well, you don't see that anymore, but it can come out in certain times. Just proves there's grace for all of us, right? Yes, exactly. But we stayed out there for 30 years. Um, I became stepmom to two wonderful sons. And when our boys were 21 and 23, and in the Navy, we adopted our infant daughter from China. So I will say that kids keep you young, no matter the age. Um, and we were very happy, had great life, all these types of things. And in 2005, I got a call asking me to come to Grand Rapids to work. It was a recruiting call, which I thought was pretty funny, you know, because I was well established by then.

unknown 3:53

Yeah.

SPEAKER_00 3:54

And my husband, who was born in Phoenix, said, let's go, you know, and we'd been here to visit before um in all seasons, so he knew, but um, you know, Phoenix was getting really big and busy, and he was ready for a more quiet life. I do have some family members too here, so you know that was nice for our daughter to grow up with her cousins. Um how old was she when you moved?

SPEAKER_01 4:20

She was nine. Oh, okay. Okay, so still young enough to not really worry about maybe maybe too much about the friend thing, right?

SPEAKER_00 4:28

When you move and not too much, no. So that's the nice part.

SPEAKER_01 4:35

Yeah, how about the older boys? They were they were both. So they so they didn't mind.

SPEAKER_00 4:41

Oh, oh, they were out of the navy by then. Yeah, they were oh, were they? Okay, yeah, they had families of their own and everything. So, you know, she is an aunt to some kids that are close to her in age. It's pretty funny.

SPEAKER_01 4:58

My son was my son was an uncle Joshua at nine. Yeah, yeah.

SPEAKER_00 5:03

Well, she wasn't far behind that. She, I think was 11 or so.

SPEAKER_01 5:09

Yeah, yeah. It just happens, it makes it fun. Life's interesting that way.

SPEAKER_00 5:14

Well, it is, it is, you know, and never never say never. I never thought I'd have a kid at that age, but hey.

SPEAKER_01 5:21

Yeah. So what was the recruiting call that brought you back home?

SPEAKER_00 5:24

Yeah, it was um, and we can get into it more later, but at the time, um, well, a few years previous, I had been the director of professional practice. I'd been the I'd been working in the um, I was a makes me think a minute. Okay, I was the clinical nurse specialist in the pulmonary unit at um Phoenix Children's Hospital and had the wonderful opportunity to, I was recruited there from the adult pulmonary medicine side to create the second um adult cystic fibrosis clinic in the nation. But I had to learn pediatrics too. And while I was there doing that, I heard about this woman in Grand Rapids doing this professional practice model that I was really interested in, Bonnie Wasorik, and um got an invitation to this conference, and I thought, oh, how ironic, it's Grand Rapids. I'll go, I'll, you know, business trip, see the fan. And ultimately ended up um working with her and started the first pediatric model of the clinical practice model in the nation at Phoenix Children's. So did that for several years, then we got our daughter, so I wanted to back up a little bit, and I actually um went to the Mayo Clinic and started working there as a director of patient family support. And um, after a few years, Gracie was getting older and I decided to go back to the bedside, and that's and I loved the doing palliative care at the bedside, and then uh Bonnie called and she said, We're expanding, you know, internationally, nationally, we want you, blah, blah, blah. But and I loved working with her, it was just great. But I was like, I'm really happy where I am. And it's the one who said, Let's go.

SPEAKER_01 7:23

And I said, You're like, wait a second, shouldn't we do it?

SPEAKER_00 7:26

Wait a second. So I said, Okay, if you can get a job, we will move. He had a job in 48 hours.

SPEAKER_01 7:36

I'm like, oh come, you know, that was a sign. I mean, I know it was, it was, you know, it was hard, it was hard to leave any friends and family and everything. I would think so. 30 years in Arizona, yeah. But the crazy yeah, go ahead. I'm sorry, go ahead.

SPEAKER_00 7:55

I was gonna say, well, the crazy thing is like six months after we moved here, my hat my dad, still in Arizona, had a first of a very serious health issue. And for the next three years, I commuted back and forth to Phoenix until he died. So I fly out every four to six weeks, stay for a week to two weeks, come back. If it was a school break or if it was summer, I'd just take Grace with me. She could see friends and everything. But um, it was pretty crazy for that three years, kind of. I'd see people in the grocery store. I'm like, where do I know you from? Because I'd, you know, after a while, is it am I in Phoenix or I'm in Grand Rapids? It's just very disorienting to do that, but it all worked out.

SPEAKER_01 8:39

Did at any point at that? I mean, did you ever think, oh, we shouldn't have moved to Grand Rapids? I mean, how did this because that's three years is a long time, and your family's your priority, your dad. I mean, yeah, that's a long commute for three years.

SPEAKER_00 8:54

It was hard, and you know, I'd say, yeah, there is a time during that time frame of spiritual reflection. What am I doing here? When you know, on the flip side, I had a mom here that she she's always had issues. And after dad died, I mean, 10 days after he died, and I got back to Grand Rapids, she had a heart attack. So it's like, okay, like, can I get a break here? So it was thrown right into my dad. So, you know, I I've had 15 years of professional caregiving between them, and then um, we moved Doug's mom in with us when she had her end stage Alzheimer's. So we've had um all these years of caregiving, and I think that's important too in my story because I think I can relate to people that are both going through a crisis and going through the long-term journey of somebody with a serious illness. So, you know, all things can can work for good if you choose to reframe them that way. And that's what I choose to do.

SPEAKER_01 10:08

So take us back really quick. I didn't ask when you were at ASU. It sounds like I mean, I'm gonna guess that your degree was in nursing.

SPEAKER_00 10:18

Well, funny enough, the first okay, the first degree, I did my first year of gen eds, and um I'd known from the time I was four I wanted to be a nurse. My mom has had this picture of me in front of the Christmas tree with my little nurse outfit and the cap and the you know, the little rubber stethoscope. Um, but when I was a senior in high school, they were announcing this new degree in respiratory therapy, and that really resonated to me because of my asthma. So I did a year of Gen Eds and then I transferred actually to a two-year college. Um, at the time it was Maricopa Tech, now it's Gateway Community College, but got my associate degree in respiratory, which was where I met Doug. Um, but I worked for five years in respiratory therapy as um the respiratory care intensivist specialist. And since he was in respiratory too, we decided we'll never get a job in small town America. That was our first desire, was we wanted to eventually be in a small town together. And I thought, well, no hospital's gonna hire two of us of the same profession in the same department. So I went back to get my nursing degree. The nurses I was around all the time, they were very encouraging. And so I went back for my bachelor's and um we've been married five years when I got that, and all my degrees were um working full-time and going to school full-time, and oh my gosh, yeah, pretty crazy. So bachelors worked for a few years first in the um ICU and then went back to this pulmonary unit, this adult pulmonary unit. I went back as their manager, and while I did was doing that, I got went back, got my master's in nursing at Arizona State. And um, you know, and then when we moved here, uh I didn't know anybody. It's kind of crazy, but you know, all my clinical life was in Phoenix. And um the work I was doing with um the CPM Resource Center at that point was writing um evidence-based clinical content for that would go into programs in electronic medical records for healthcare professionals to be able to look up guidelines, how do I take care of a person with cystic fibrosis? How do I what do I look for in heart failure and all those sorts of things? So um it was good work, but I missed being with people. And so I thought, how do I get back into that? And you know, I was an unknown quantity, so I thought, well, get a degree. So I went to Grand Valley and I was in their um the pioneer class. We laughingly called us the guinea pigs, but they called us pioneers, of the doctoral program for nursing at Grand Valley. So I was in their first cohort of graduates for the Doctor of Nursing practice, and I did meet wonderful people. And during my one-year clinical, I was placed at Trinity Health with Liz Murphy at the time, who was this uh chief nursing officer. She was a fabulous mentor, uh, learned a lot about um advanced leadership. I'd been in it um at Mayo, but got even more experience here, and then was invited to it was the dean of the program. I thought, you know, talking about connections and the power of women to connect to other opportunities. Yeah, it's just been so wonderful. Yeah, because the dean at the time was Cynthia McCurran, and she happened to be at a Christmas party, and she was talking to this man that was trying trying to start this initiative in West Michigan about educating the community about um health care and advanced care planning and everything while you're still healthy. And they were trying to get this thing off the ground, and she said, Oh, I have this grad student, you know, you ought to talk to her. And so that became part of my volunteer work, my last year of my uh doctoral program. And it turned out the president of that was Ben Emden, who had been my vice principal in seventh grade. Oh my gosh. Seventh grade. I know I kept calling him Mr. Emden, and he was like, you can call me Ben. It's so hard to do that, you can't change that way with teachers. Yeah, but they hired me after I graduated, and he was a wonderful mentor as well. I mean, he's a brilliant man, but he's also very compassionate and he knows how to build coalitions, and he'd always tell me, Carol, if the if there's a way to yes, we're going to find it.

SPEAKER_01 15:06

And oh, that's a good mentor.

SPEAKER_00 15:08

That's a good leader. Yeah. Yeah. He's fabulous. So um just had a delightful time working with him. So yeah, I went to Making Choices Michigan, which was the startup. I was always their only paid employee for quite a while, and then eventually got an executive assistant. But we were able to build this coalition between all the different healthcare systems in Grand Rapids. The um we were looking at the older adult community, both from retirement communities, area agency on aging, we looked at hospices, all sorts of people sitting around our table. Gilda's Club was our fiduciary for the first few years, and then it moved to um HealthNet uh with Maureen Kirkwood. So both Wendy Wigger at Gilda's and then Maureen Kirkwood at HealthNet were great mentors as well. But we had all these trained volunteers. It was just fabulous because they could push out into their own spaces. Uh, we did an interfaith initiative for a couple of years uh where we trained people and then they went into their faith communities. So we had like not just Christian but Buddhist, and um we had just all sorts of people in there learning this and taking it to their communities. And that was the nice thing is we moved from this perception when I very first started. People would refer to me as the deaf lady. That's not the title. I'm a quality of life lady. I much prefer quality of life lady than death lady. No, we're changing exactly, you know, and it was so neat to see the change over time because it went from really having to work hard to get any group to listen to me to buy the last couple of years. I had on average 85 speaking engagements a year, over 4,000 people would attend pre.

SPEAKER_01 17:07

Incredible.

SPEAKER_00 17:08

Yeah, so it was great.

SPEAKER_01 17:11

You know, it was word of mouth, it was grassroots and really yeah, because it sounds like I mean, from what your experience has been in the past, leading up to now you having your own business doing everything that you've just kind of told us. I mean, was there, you know, kind of explain a little bit more about what your business is, maybe the name of your business and kind of what it is that you do in a in a day, and maybe even I'm assuming there's got to be some sort of connection between your parents and the care you provided and what and and what you do every day for others.

SPEAKER_00 17:47

Yep. So the name of my business is So We May Know, LLC. Okay. Um, and really it's so we may know what's important to you to live life well. We cannot help you as healthcare providers get the care you want if you can't be clear on what kind of care you want. And if you can't speak for yourself, who is your decision maker that could share your preferences for care with us? So that's why I named it that. Um, kind of a little bit of biblical connotation, but yeah, it's it's so we may know what you need. So my mission is to educate people about advanced care planning, the process, how you do it, how you um get it finalized. And then I also provide serious illness navigation for people who are either starting a journey or midway through a chronic illness. They want to look at future care options. Um and so I get a lot of consults. I do a lot of teaching still in the community, um, but I also get these calls. And sometimes it's somebody who's heard me in the past, sometimes it's a friend of a friend or something like that, and they might be in crisis. They've just gotten a really hard diagnosis. I call it the whack upside the head. And you know, they're just trying to figure out where do we go from here, you know, and that's how I can help them. I'm not taking care of them on a day-to-day basis, I help go through the process so that they can get the questions I ask help them really clarify in their mind what's going to be important to them. So yeah, that's that's my business.

SPEAKER_01 19:42

Yeah, it's a it's an incredible business. So if we think about it, I mean, are there actual documents that um people would sit down and complete with you? And then how do these documents work if they already have an estate plan? Sure.

SPEAKER_00 19:57

Um, well, the I think one of the biggest myths, and believe it or not, the people I have the hardest time with are people that are working healthcare. I bet you know, they've seen so much and they can't split their mind about technology versus what matters to them to live life well. So the first thing I always say is, you know, this document is going to be a lifelong document in that you're going to update it over time because what you want at 18 is not what you want at 50 is not what you want at 85. So you're going to start the process and then you'll continue to update it. I can do that with a person or I can um give them online tools. Um, but I think it's really important to go through uh a conversation with both your loved ones, and it helps to have somebody like me be in um that objective third party. But yes, they can do it. And so if it's already an estate plan, because some people say, Oh, I did that with my lawyer, and they're like, Great. I said, So who's your patient advocate? Well, I don't know, or or they might say, Well, it's you know, Suzy Q. I said, Okay, when did you last have a conversation with Susie Q about what's important to you? Live like, well, we didn't talk about that. Okay, you need to go back, you need to see what you even said you wanted, and sometimes they'll look back and go, Oh, like Bob died two years ago. Oh, you know, it's my spouse, we're divorced. Oh, yeah.

SPEAKER_01 21:38

You forget who they put on there and they never update those actual advocates for them. I know it's great.

SPEAKER_00 21:43

Exactly. So, yeah, you want to look at those. I say, you know, we say in the beginning, at least every 10 years, but as you get older, especially I'd say at 60, 55, 60, start looking at it every year, especially once you hit your Medicare age and you know, you get your annual exam. Everywhere. And now, and I will say it is partly due to Making Choices Michigan. A lot of the primaries ask for it. They used to not ask for it, but now they say, Do you have an advanced directive? Can I have a copy? You know, so it's a great chance to review it and update it and make sure it's still the choices you want for both your treatment and for your advocates. Because I've gone through a lot of ad kids. I'm not hard on people, but people have people have had their own health issues and stuff, you know. By the time you get older, there people say, I can't do anymore. I've got MS or whatever, you know.

SPEAKER_01 22:34

I just so I have to take care of myself. I'm not able to take care of you or something like that. I mean, life does bring a lot of curveballs. And so really it sounds like these documents are fairly flexible. Very, very in terms of you know, changing the advocates, yeah.

SPEAKER_00 22:51

So yeah, all of it. You can change, you know, the choices for your treatment too. Some people, when they're younger, they want a lot more intervention than they want when they're older, you know, a lot of older and especially are very old, you know, I hate using that term, but there's old, old, old, very old, whatever.

SPEAKER_01 23:13

Um, but I don't know, something yeah.

SPEAKER_00 23:17

But they want to die at home, surrounded by loved ones, you know, and then they don't want to be in the ICU with restricted visiting hours and hooked up to tons of machinery that is not going to cure the problem that's causing their death. And that's one of the biggest things, you know. People say, you know, in the old days, docs would walk and say, Well, if your heart stops, do you want me to restart it? And they go, Well, of course, but they don't understand that if you've got terminal stage four cancer, it's metastasized throughout your body. Your heart stopping is the very end of that process. And if we could get it to start again, it doesn't mean the cancer's gone. So CBR was started really for people, younger people, with sudden heart attack, you know, to get the heart going till we could do something with it. But our techniques have become so advanced that we can keep a shell alive. I mean, I hate to say that that way. I mean, but you know, there are people sometimes that are not there. You know, there is nothing going on upstairs, they're never gonna know who they are, where they are, they're never gonna meaningfully interact again. But America is an opt-out country. Some countries are opt-in. If you want life-sustaining treatment, that's what you have to say. Versus in the United States, you get it all unless you tell us you don't want it.

SPEAKER_01 25:03

Unless you opt out, that's what you're saying. Okay. Yeah. Yeah.

SPEAKER_00 25:08

Yeah. And you know, it's something to think about. I mean, for my dad, he was 78 when um he was gonna die from heart failure. There was the option for what's called an LVED left ventricular assist device or a heart transplant. And he was like, I'm 78. Why would I want to do that? It's gonna cost me a ton of money. You're trading one problem for other problems, you know, with all the if you even get the transplant for him. These were his values, and so I never push my values on anybody, you know. But for him, he was saying, I would rather any money that I have go to my kids, you know, and stuff like that. I just want to be comfortable. And that was great that we had that talk very early because as he progressed, we we interviewed hospices in advance. He didn't need them yet. I said, This is the perfect time to do it. You're you're calm, there's no rush. And we had a couple different ones come in, and that's free. Uh, a hospice will come out and you know, tell you about the services and everything. He chose which one he'd want. And then when the time came, it was a simple phone call. They already had his information. We started, and because he started early, he lived 18 months on hospice. That's usually a six-month renewable benefit. Yeah, that's what I thought. Okay, yep. But he had such great care that his life was actually extended and he died 18 months later. And really, it was only the last week of his life where he looked like a true hospice patient where we had a bed in there and everything. I mean, he was driving his car until three weeks before he died. Wow. Yeah. Yeah. So people that you know have an issue or they want to have a plan if something happens, it's just so empowering for them to know that they've got a plan to stay comfortable and that you know their their wishes will be honored.

SPEAKER_01 27:13

Okay, there's a lot to unpack there because I think the first thing I want to ask you before I forget is you had talked about this advanced directive. It could be as young as 18 and changing it in midlife. What would you say the average age is for somebody to have an advanced directive?

SPEAKER_00 27:29

Well, we're slowly getting a little bit better, but it's still it's still in the senior citizen age, you know, 60 five. Um but when I go when I go through these with people, that's when the adult kids realize, oh my gosh, I I should have one of these too. And for the past five years, I've actually taught a seminar every year at Grand Valley for the younger for the student nursing students, and really encouraging them, you know, at 18, you should have one. I mean, my daughter, hers, we did it the week after her 18th birthday. She was like, I know it's because of what you do. I gotta have it, blah, blah, blah. But that's but by the time she was 20, two of her three best friends from high school were dead. One had um slipped on an icy road coming home at night, you know, hit a tree, and the other one was an unintentional overdose, which is now a leading cause of young, well, not just young people, all the way up to age 64. Unintentional overdose is huge. It's not it's not bad kids or whatever, it's just everywhere. Yeah. So um, wow.

SPEAKER_01 28:53

Yeah, that's a lot for your young daughter to go through, even you know, well, you know, exactly. Your people closest to you. Wow.

SPEAKER_00 29:04

But she came back after the second funeral. She said, Man, mom, what a mess. She said, The you know, the parents were fighting. It was gonna be funeral, was it gonna be cremation, open casket, closed casket, what's he gonna wear? She wanted to renew, she wanted to redo her directive, and we did, and she got even more specific on exactly what she wanted. So, you know, it's I hope I never have to use it, but if I do, I know exactly what she wants, and I would learn that.

SPEAKER_01 29:39

And at this point, isn't your daughter married even? Yeah, she's married. Yeah, that's what I thought. So now I mean there's that shift, you know. Now it's probably her husband, and he hopefully knows her wishes as well. I mean, that's a thing, life changes, and advocates change, communication must happen, all of these things, you know. That yeah for her. So, okay, so the other question I was thinking about is it sounded like the way that your dad was communicating to you and you guys were having these good conversations, he was choosing what I would call quality over quantity of life. Yep. Tell us a little bit more about that.

SPEAKER_00 30:15

Yeah, yeah. Well, it's that's one of the biggest difficult questions I think people would face. And uh first of all, I say understanding the question is the first hurdle. Because what is extending life look like for a person? And is that going to be temporary or is it gonna be permanent? I work from the brain viewpoint because when I said earlier, you know, do you know who you are, where you are, meaningfully interact? Well, that could be a serious car accident, that could be a fall on the ice, that could be um a big stroke, and it could be dementia. They each look different, some are sudden, some are long term, but at the end, what is your neurologic function going to be? Will you know who you are, where you are, can you meaningfully interact? And that is what I always take it from because people get so wound up about technology. And I say, you know, if you're stage four or very the final stages of Alzheimer's, you know, if it's very common to choke and get pneumonia and things like that from aspiration. And you know, I I talked about that with my mother-in-law while she was still in the middle stages of dementia. We talked about that, and you know, we could give antibiotics for that. It could clear up the lungs, it's not gonna clear up her brain. They also don't eat as much, the body just doesn't want as much food, you know. And people tend to say, Oh, come on, eat this. You know, they're that that is a cultural thing, no matter where you go in the world. People think, you know, food if if they just eat the chicken soup or whatever. But you know, the body doesn't want it anymore. And then in fact, you can cause more harm, like with heart failure, trying to shove it down somebody's throat because their heart and their kidneys can't process that stuff anymore. You know, they're just trying to function at the minimal level. And when you're adding fluid, you're kind of drowning them. Um so you know, she said, Well, I don't want anybody shoving food in my mouth. And so I said, So if you want it, fine. If you don't, fine, and go into any assisted care place or sometimes, and you'll always see somebody trying to come on and one more bite, one more bite. And it's like uh her plan of care said if she wants it, she can have it. If she doesn't, leave her alone, you know that you don't have to shove stuff, no forced oral feeding. So that's a quality of life issue. And for my folks that have serious illness already, um, with the heart failure or this or that, I've had people ask, you know, when you think quality of life, I think, am I going to live longer or am I going to die slower? And I think that's a good way of doing it too. Yeah, say that one more time for our listeners. Do I want to live longer or die slower? Die slower. Yeah, sure. We can give you more days. In fact, Atul Goan Day Being Mortal is a fabulous book, and it's a great documentary. You can see it for free on PBS frontline. Um but that fight terminology, you know, I hear that a lot. They're fighting this, they're fighting that. And, you know, that's kind of like battle language, and and I get it, but that's a very western concept, by the way. My eastern hemisphere patients don't usually think that way. They'll say, like, I live with versus I am battling. And I I really I just have a visceral thing at obituaries, they say so-and-so lost their battle. I thought, no, they lived with great dignity with this disease while they had it, and they lived life to the fullest, you know. But if they use fight language with me, you know, like as Gwandi says, okay, what are we fighting for? Are we gonna fight for um more time, which might mean you're gonna sacrifice right now feeling good, you know, but the hopes of living longer, but that doesn't address the function of how you're living longer, you know, because with some treatments for some diseases, the treatment for some people is almost worse than the cure, but they want to go through it because they want to have a few days extended, the trade-off, you know. I want to make it to my daughter's wedding or whatever. Um, with palliative care, though, sometimes we say, maybe we should move up the wedding. I've done weddings and ICUs and stuff like that, you know. So you gotta frame it within that, and also I always address the spiritual component as well, not religious. Religious is an institution, but for every single person, um, what makes them tick? What what um gives them strength, what gives them hope. You know, it might be a religious practice, it might be their pet. You know, I had a guy that just lived for his dog, you know, so it was getting the dog into the hospital so he could see him before he died, that kind of thing, you know, whatever it's important to them. So I don't want people to feel pressure, I want them to make up their own minds based on um what's important to them to live life well.

SPEAKER_01 36:03

Yeah. The other thing, too, that I think that was interesting for me to hear from you is that you interviewed different hospices, and I didn't realize that there was more than one hospice company. I thought there was just hospice. I don't know if our listeners, you know, I mean, nobody ever says there's the name to hospice, it's always just so-and-so is in hospice, right? So tell me more about that, or how even locally in the Grand Rapids area. I mean, what were what are the different hospice companies, or how would somebody go about interviewing?

SPEAKER_00 36:36

Great question. This week there's 17 in the Grand Rapids. Yeah, 17. Yeah. So there's three things I tell people to think about, and then I direct them to a website. But first of all, there is profit versus nonprofit. Okay, and that's a really important question to ask because for nonprofits, you know, you'll see a lot more of fundraising usually for them for additional type of services, you know, the music therapy, the pet therapy. Um, one of them has the ocular things, so you never got to go, you know, to V to Venice. Well, you can float down the boat. Oh, you know, all that kind of stuff.

SPEAKER_02 37:21

Yeah, it's pretty cool.

SPEAKER_00 37:23

It's really great. Um, so there's profit nonprofit, then there's um secular versus faith-based. Okay. So we have a couple faith-based ones here, and what I always clarify to people is some people think, oh, well, then you have to be of that faith to use the services. Like, no, the faith-based means they function on, for example, Christian principles of compassion, mercy, just da-da-da-da-da, you know, but they treat anybody of any faith. Okay, and then the final one is um whether they're independent or are they part of a healthcare system. So, you know, it kind of like the profit nonprofit, but you know, associated with, and you can choose any hospice you want. So if you're like in a hospital and you need to choose it, they're required to give you a list of all the hospices in town in your area. Um, there are a couple ways to find them, especially for rural folks. Um you can do the getpalliativecare.org to find palliative care providers anywhere in Grand Rapids or in Michigan, well, nationally. And then there's also the um Medicare Compare has all sorts of great um, like how to find skilled nursing, how to find all the different types, but it's also how to find a hospice. And it even has questions to ask when you're interviewing the hospice, which is great. Yeah. It's a long list of questions. So yeah, Medicare Compare and get palliative care.org.

SPEAKER_01 39:12

Okay, that's that is so interesting. Well, so for someone that might be listening, you know, who has never even thought of this or discussed this with family, how would they start? I mean, where how do you even begin a conversation? Because these are challenging conversations. So where do they start and why do you think people avoid them? Because I think that's the the next question.

SPEAKER_00 39:33

Like, well, yeah. Um, and the avoidance part is really interesting. I say it always comes back to family culture, and I'm not talking about ethnicity here or you know, race, ethnicity, any of that. It's in your family, how do you deal with conversations? Because, like in my in my childhood on up, my mom was a frustrated nurse. She started nursing school and then she married my dad, and she had to quit because in her day you couldn't be married and be a nurse, nursing student. So she had to give it up. So she was always a frustrated nurse doctor. I mean, we talked about everything. The bird died, you know, she's picking up. Okay, look at this, look at that. You know, it was just we went, she took us to see our sick great-grandparents. If there was a funeral, she they took us. It was just all a natural part of life. Some families never ever talk about serious illness, and they do not use the D-word. You know, I've had entire conversations, serious illness conversations, people where I never use the word death, dying, anything like that. I can adapt the language to really talk about what's important to you right now to live life well, you know.

SPEAKER_02 40:57

Okay.

SPEAKER_00 40:57

So, but um, I think that I hear a lot, it's getting a little bit better as the boomers are aging. The generation before us, the greater greatest generation, all that stuff, part of it was you suck it up, pull yourself up by your bootstraps, you don't talk or complain about anything, you just push on. And so as those generation that generation has been dying out, the boomers, you know, they want to share everything. So I'm seeing a shift, but it used to be, you know, I could find out from my patient what they wanted, but they didn't want the kids to know. Yeah, that's what I yeah, or vice person, though. Yeah, the kids that don't want their parents to know that they have a serious illness. And I just it cracks me up because sometimes I'll be in the room with the parent who's got the illness, and they're telling me all this stuff, and then the then the kids are saying, now she doesn't know she's dying, so let's not think. Oh, you're a little bit wrong.

SPEAKER_01 42:04

Yes, that happens so often because they never want to upset their family members, or you know, I don't know, they just don't tell so-and-so, right?

SPEAKER_00 42:12

And and the the older adults that I deal with now are very frustrated when their kids won't talk to them, they want to talk about this, and then it's like, oh mom, don't be so morbid, dad, don't be so pessimistic, you know, and it's like, no, these are real life issues, and they want to be assured that they can have at their end of life, they can have a respectful process of whatever it is they choose. And so for the people that are skittish about it, I always tell them the first thing you need to remember is the same thing that I remember when I go to into any conversation. It's not about me. Period. It's not about me. It's about this person, and you know, actually, funerals, when you go to a funeral of a friend or something, that's a great time to bring it up because people walk out and they'll say, Oh, that was so nice, that was so lovely, or man, that was kind of rougher. Yeah, well, what should it look like for you? What would a really, you know, how could we honor you? You know, so flipping it around that way. And I would also say that the other barrier is the anticipatory grief. The some people, it's just hard for them to imagine what will happen when that person's no longer alive. And that's when I love if you've never read it, Tuesdays with Maury by Miss Album. Yeah, because Maury says at one point, he says, Death ends a life, not a relationship. You can't really have a relationship with a loved one through special memories and everything. I mean, mom's been gone the eight years this year, but I can still hear her voice in my brain all the time telling me, oh, you know, today I'm making corned beef and everything. For St. Patrick's Day. We're Irish, you know, and the you know mom's recipe for this or that. And that makes me smile when I read it. You know, it brings back fun memories of special times. So I say try to get over yourself and make it about them. And then I always recommend start with the conversation project. It's online, it's free. And um it's a great evidence-based tool. It's all these questions that you work through. You can work through them by yourself or you can do it together. Um, I say, you know, start by yourself to at least read through them and everything. Um, some people just start filling it out right away too. They want to do it, and other people find certain questions say, well, I'd want to talk to my kids or whomever about that. But um, it's really been nice over the years because now they've got it, not just in different languages, but they've got it for well adults, they have it for people with chronic illness, they have it for serious illness, and they have it for dementia. Okay. Yeah. And I tell all my clients that are um like 60 or older, whether they've got dementia in their family or not, we're seeing more and more of it because people are living longer. The chronic diseases that used to end our life much early in the 50s or 60s. I mean, my husband's dad dropped dead of a heart attack at 63, you know, just gone. But now, with all the medications and blood pressure management and all this kind of stuff, people live much longer. And sometimes they've outlived the thing that would have killed them, but now they've got dementia.

unknown 45:44

Yeah.

SPEAKER_00 45:45

So by 2030, they're saying that 50% of all boomers will have some form of dementia because we're just living so long. So I say fill out the dementia one now because it's great. It talks about if I had mild, if I had moderate, or if I had severe, and it talks about the different stages, what they look like. You can always go back and change it. Sure. But once again, I mean, like with my mother-in-law, thank God we did it so that I could do the no forced oral feeding. And there's an additional um form that I used with her that you can't do online, you do with your doctor because it's a medical order, but it's called the MyPost, the Michigan Physician orders for scope of treatment. And that's where we could say no forced oral feeding, no antibiotics. If she falls or something, unless a bone is sticking out of her skin or if she's massively bleeding, you do not transport her to the ED, just make her comfortable. And we did have one incident when she was in memory care at the very end, and they wanted to transport her. And I said, No, that's not in her directive, you know. And the nurse said to me, Oh, so you don't want to do anything. And you know, I knew clinically what she was saying to me is you don't want any advanced interventions that would just stave off the inevitable. But for the first time, I heard it as a family member, and for a minute I was like, I'm not doing anything. You know, it was kind of a shock for a second, and then I got my brain back. I said, Hey, wait a minute. I said, I'm following her advanced directive. I am doing something. She wants to die in at home, and you guys are home. But what I also did was immediately called for a hospice consult and got it because then they could call the hospice if there were any issues for her, but they would not transport her, but they could add on services that were necessary to keep her comfortable. And she ended up dying about 10 days later just from Alzheimer's, you know. But she was in her bed, I was in a bed next to her, you know. I was with her holding her hand. She was able to her last words to me, even though she had Alzheimer's, she she looked right at me, she took my hand, she said, I love you. Oh where that came from, truly, God only knows. But we wouldn't have had that opportunity if she was in an ICU hooked up stuff.

SPEAKER_01 48:16

That's a great lasting memory. Oh my gosh. Well, so as we transition, is there one last thing that you would want to leave with our listeners through this process? Actually, what I do want to know is how to contact you. You know, let our listeners know your um website. And then what is that one last thing that you could leave with our listeners to kind of sum up today's podcast?

SPEAKER_00 48:43

Well, I don't have a website, I do a lot by um word of mouth, but I do, but I do have LinkedIn. So my name.

SPEAKER_01 48:52

Okay, great. People can find Carol Robinson. They can see Dr. Carol Robinson on uh LinkedIn, okay? And I'll put that in the podcast too so that they can see that.

SPEAKER_00 49:01

Yep. And I would say the one thing is, you know, don't be afraid to get started. See this is kind of like an adventure. You're going on a trip, okay? When you go on vacation, you know where it is you want to go, you have some of the things you know you want to see or do along the way. You don't know all of them, but you know some of it. So I'd almost say see this as a destination and what would be important for you along that destination, and when you use these questions and things like that, those are gonna help you to get some of the answers. Um, I've when people are doing this when they're well, I've done one family, it was a family of 35. It was a they turned it into an event. It was a pizza and beer night. I said, okay, you can't drink a lot of beer before I get through my content. But you know, and then we had all the documents, they filled them all out together. 35 people. Yeah. And I've had other people that um we always making choices. There were two things we'd always push at Thanksgiving. We'd say, Let's talk turkey. And there was there were some families that would get the advanced directives from us, put them on everybody's plate. Because the questions are really good. You know, you end up hearing family stories and stuff, you know, of when Aunt Marco went, you know, this or that or whatever. So that and National Healthcare Decision Day, which is coming up April 16, because we say the only things that are certain in life are death and taxes. So I want you your taxes by the 15th, your directive on the 16th.

SPEAKER_01 50:45

Oh, that's so funny. That's my daughter's birthday. April 16th. Well, as soon as she's 18th, she was we've gotta we've gotta do that advanced directive on her birthday. That is cute though. I love like so. You're talking beer, pizza, and advanced directive, or what'd you call it? Turkey talk when everybody's together page. Let's talk turkey. Let's talk turkey. Yeah, I love it. Let's talk turkey. Okay, that's awesome. All right, well, I'm just gonna ask our listeners if they're enjoying this conversation to please follow women and the businesses they own podcasts. And you'll find me on Spotify and Apple Podcasts, YouTube. I try to make the post on Facebook as well and LinkedIn. So please share this episode um with anyone that you just know that would be inspired by it. Um, this conversation, we have only just touched the surface and already our time is up. But um, I will post that information where they can get a hold of you through LinkedIn. That will be wonderful. And now, as we near the end here, it's our lightning round where I'll just ask some crazy questions. So let's just start with something really crazy. Like, what do you, if you were to eat a hamburger, what are your toppings? What do you put on your hamburger?

SPEAKER_00 52:04

Oh, I'm pretty simple. Um mustard and sweet relish and lettuce and a tomato. Perfect.

SPEAKER_01 52:13

How about um what's the craziest thing that you put in your purse?

SPEAKER_00 52:21

An advanced direction. Because I'm a nurse. It's called wound stop. I can, if there's a gushing laceration, I'm known for coming upon bad car accidents. So just dump a little wound stop in there. We're good to go.

SPEAKER_01 52:39

Well, I think the rest of us thank you, but that is really not something I would ever had imagined.

SPEAKER_00 52:45

Yeah, I'm sure you probably wouldn't.

SPEAKER_01 52:48

So are you the um do you love having a paper hold on to daily planner, or do you like everything digital? I am totally digital. Oh, you are all digital. Oh, I would have got that wrong. I would have for sure thought you had a planner, like something tangible.

SPEAKER_00 53:04

Well, it is tangible, you know, and I can share certain things like with my husband so he knows where I am because he's retired. I'm not so you know, he knows where I am that day and everything. But yeah, my my grocery list, everything.

SPEAKER_01 53:18

Got it. Awesome, love that. What is one word your family would use to describe you?

SPEAKER_00 53:26

Oh boy. Gosh. I think if they had to really reflect on it, they would have said dependable. Because my parents I was really caregiver, so dependable.

SPEAKER_01 53:43

That's a great great one. I love that one. If you could give your younger self one piece of advice, what would you tell yourself?

SPEAKER_00 53:52

What I've told myself for years now is you know, when we were young, people would say don't sweat the small stuff. And I'd say, but I don't know what the small stuff is. And I do, you know. Through my life's work I just can't get as wound up about things as I used to. And um so yeah, enjoy life and uh don't take it for granted.

SPEAKER_01 54:21

And age brings that added perception, right? I mean, the older we get, the more we can kind of see clearly on the small stuff.

SPEAKER_00 54:32

And I will say, my younger self, the one thing I did do too, because of my career was the first year of nursing. Um, they had a pension, and the second year they went to 401ks. Always do the 401k. Good plug! Oh, seriously, you know, and they so what I started the very first year and I worked my way up, and then eventually I learned okay, only invest to where they match, and then do a Roth above that. And long-term care insurance was first offered when I was 26, and my husband was just a little older than me, and we did it, and thank God we did it. I mean, but we did it because of what we saw, you know, how expensive healthcare is right now. Yeah, it's a six, it's it's the number one um 60% of people with personal bankruptcy, it's from medical debt. So yeah, planning ahead so that whatever care you need, you're gonna be able to afford it. But you're covered, yeah. That's good.

SPEAKER_01 55:35

Well, I appreciate that.

SPEAKER_00 55:37

That's I can't I'll shout it from the rooftops, yeah.

SPEAKER_01 55:41

Okay, so what's your favorite type of food? Like um, like a Mexican, Italian, Irish, I heard you say, maybe it's something that somebody else cooked. Oh, I love that genre or whatever we want to call it, the type of ethnicity. That's the kind of food I like too.

SPEAKER_00 55:58

If I don't have to make it, I'm a lot. I said, you don't want, you know, I don't sign up for meal trains. I'll sign up for the laundry. I'll do your laundry. I'm really good at laundry.

SPEAKER_01 56:07

Yeah, I've never been good about bringing meals. I'm but I'm stuck on it. Some people are so good, and I'm always like, well, if I can make it in a crock pot, I'll bring it.

SPEAKER_00 56:15

I say if you don't mind it being from Costco, I'm all over it.

SPEAKER_01 56:18

I can bring it a whole last one. I don't know. I've tried this one before, but this is this is my slogan. Finish the sentence. She came, she spoke. And did you ever did you catch my slogan here for the podcast? She came, she spoke, she conquered. No, oh, that would have been a good one. She inspired. But conquered is good. That is really good. Well, I always like to wrap up myself with my own reflection after, you know, we go through the podcast and what have you. And sometimes it's you know early on, and sometimes it's right at the end. But one of the things that I had um written down, and maybe it's a combination a little bit of two of the things that you had said is, you know, um you had said it. Do I want to live longer? Or I think you said, or die short.

SPEAKER_00 57:08

Die slower.

SPEAKER_01 57:09

Die slower. Thank you. That one. I think that, but then you also said it's not about me. So sometimes we have to kind of take ourselves out of that situation for the person filling the advanced directive, let them make those decisions. So I think that um those are the those are the things I think are very important and that will stay with me here through this, and maybe even from our listeners. So Carol, thank you for being part of Women and the Businesses They Own podcast. Your story mattered, and today you told it beautifully. And finally, to our listeners, remember she came, she spoke, she conquered and inspired. And we'll see you next time.