Hello, Peripeteia podcast listeners. I'm so excited to introduce you to our guest today, Mary Willems Akers. Mary is a social worker for hospice and end of life care, and as a fellow social worker, I'm always like drawn to social workers. Mary is also a sober babe, and that's actually how we met on Instagram, probably, right Mary?
Yep. Instagram. Yeah, you think you started following me and then we connected and then you're close here in the Midwest and um, we actually got to meet in person for coffee, which I just absolutely adored. Yeah. And I fell even more in love with you, um, even though I already, I already was a big fan, but then I got to know you better and fell, um, even more in love with you and said, you gotta come on my podcast.
And yeah, Lee agreed. And now a year later. I think we're under a year. I think it might, I think we might be approaching six months maybe. Maybe seven. Okay. That's the way it goes anyways. Can you share a little bit about your journey into becoming, um, a social worker at hospice or end of life? Because. How depressing is what somebody might say, right?
Yeah. Our medical director, one of our, not our actual full-time medical director, but one of the associate medical directors says, other than that, Mrs. Lincoln, how'd you like the play? Exactly. So, um, yeah. I don't know. When I first became a social worker, I did not know what I wanted to do. I just kinda wanted to collect experiences and work with different pop.
Populations. So, um, my first gig out of, um, college with my bachelor's degree, I worked with adults with developmental disabilities. Um, I did not have a social work degree, but all of the jobs I wanted required a social work degree. So I decided I was gonna go get a social work degree. So, um, I earned my master's degree and during that time I worked in community mental health.
Um, and then I did an internship at a cancer organization, cancer care organization. Um, directly out of college I was working with, um, individuals living with HIV and aids, which was really cool 'cause I got to teach them about, um. Medical, you know, needs and, um, how to have safe sex practices with their partners and, um, just how to navigate HIV and aids.
Um, from there I went and worked with unhoused individuals veterans that, um, don't, they were homeless, um, in a shelter that was not a good fit for me. Um, and so I was looking for work at that time and I have a sister-in-law, um, who is also named Mary. She's Mary Claire. And I'm Mary Willems Acre. So we always say the other Mary something Acres.
Um, but she al, she also has an Ms WAA Master's in Social Work and she was working in long-term care at the time, and she had. Um, a hospice person who was coming in and she was like, if you guys ever have an opening, I want to work for you. Um, and so she kept building that connection, um, and they had an opening, so she reached out and she had just taken a, a leadership role at a different organization.
Um, but I was looking, so I applied and I mean, they called me in like two seconds and I was like, oh my God, they think I'm my sister-in-law. And so she called her contact and they were like, that's not your application. And they were like. No, it's my sister-in-law, like, wow, she's really qualified. Yeah, she's great.
So go ahead and call her. Um, and so at that time I was probably changing jobs about every two or three years, and I have been at my organization for 13 years this August. Um, and so. Social work is so great. I was just at a junior achievement event, I told you about that, where I was talking to high school kids about different, um, opportunities in the field of hospice, and I kept talking to 'em about social worker.
You can be a therapist, you can work at a hospital. I believe the NFL has, um, social workers working with them to talk about domestic violence, um, homelessness, I mean hospice, all sorts of things. And so. Um, before going into hospice, I was changing jobs about every three years because I wanted to increase my base rate.
I wanted to earn more, I wanted to work with different folks. I didn't wanna stay stagnant. Um, and I landed in hospice care and, um, I. There. A great example of this is there was one day where I was in a multi-generational home with Burmese refugees, um, and I drove across town. So they have a, a, a parent or a family member that's dying in their home.
And I drive across town to this very hoity-toity part of our city. And I'm in this huge house and this woman's showing me photos from a trip to Italy, um, and talking about how they're gonna be women with. Pie at her door when she dies to collect her husband. You know what I mean? So it's like you go from, I had come from that experience where I was working with people with HIV, or I was working with mental health, or I was working with these other populations.
Everybody dies, so everyone dies, so you get to work with everyone. Now, of course, there's lots of health disparities. Not everybody engages in healthcare. Um, so unfortunately some people pass at the hospital or they receive a diagnosis without any preventative care or any care leading into that. Um, but for the most part, I've been able to see all different walks of life, um, through my hospice care.
And so that's really why I've stayed. I'm no longer at the bedside. I, I work, um, in administration now, and I lead leaders and I build programs. And so that's kind of where I'm at at this point. Um, at, at that stage with hospice. And thankfully our hospice organization has a community grief center, so I'm able to manage the Community Grief Center, um, and manages a loose term.
I, I, um, direct the leaders of that organization or that provide all the programs and counseling so. So all of that, that's kind of how I landed there. Wow. I love it. And it makes so much sense that you're drawn to it because it is a variety of population. And the thing we have in common is, um, it's like, um, I always think of this permit, the frog on a bike who says basically like, don't take life too seriously.
None of us are getting out alive. Right? Yeah. So there can be humor in, there can be joy, um, and connection and belonging up until the end and even after. So, yeah. That's beautiful. What do you wish more people understood about hospice care? Because just the word, just the term it's like. Um, I'm guessing it'll turn people off from even listening to this.
Yeah. Because it's so sad. Or dark. Yeah. Or morbid. Yeah. Um, but you might have another take on that. I'm curious. Um, the thing I always used to say to individuals, because social work also comes with its own weight, right? People think about child protective services or they think about. Kind of the nitty gritty social work stuff.
You know, social workers are there to tell you that you can't do that, or we should be doing this, or they're trying to coach you somehow and you don't wanna be coached. Um, so when I would go and visit with patients at their homes, I would ask them, what do you know about social workers? Have you ever had a social worker in your life?
And they would say, yeah. And I'd say, okay, well tell me about that. I say, that's not why I'm here. I'm not here to do that. Um, and that social work is police work. Yeah. A lot of people do think supervis people supervis. Yeah. Supervisory or rules to follow or they're gonna catch you doing something wrong that a social worker's job is to catch you doing something wrong.
Yep. Which is funny because social work, much like librarians, we're kind of rebels, right? Like we know, we know the system so we can work the system, I guess is kind of how I always put it. But, um, so with that, when I would go into homes, they would say, eh, we don't really, we don't need a social worker. And, um, I currently manage our spiritual care team, so our chaplains, our or spiritual care counselors, I don't need that.
I don't need a minister. I have my own preacher. I'm Catholic. I don't. I don't need any of this stuff. Um, and we just tell them, you know, we're here to witness what is happening and we're here to walk alongside you. So wouldn't it be great? I always just say to my families, wouldn't it be great if when you really needed help, I.
You knew me and I knew you, and I could help you in a way that honors your family. Um, I can know what dad wants. I can know, um, how your mom is, just like what the relationship is with her spouse and, you know, just being able to actually help people. So there's never, and I would encourage anybody who has known somebody on hospice care, so any of your listeners probably have had somebody on hospice care ask them if they signed up too soon.
Did you sign up for hospice too soon? Did you feel like that was too early? I guarantee you they will say, I wish we would have done this so much sooner because. I was able to help them. You know, when you think about, when, when I was at that junior achievement event, we have this photo. 'cause we we're oftentimes talking to middle schoolers or high schoolers, and there's this photo of this man and he's lying in bed and he's got all these tubes and all of these wires and all of these machines beeping.
Um, and that's how they're caring for him in that setting. And then below that, you have the same gentleman and he's laying in a bed and he's got his person at his side holding his hand and he's got a picture of his family on the nightstand, you know. We're taking care of people in their homes and it's so person-centered and it's also interdisciplinary.
So I've already mentioned the spiritual care aspect, um, which my spiritual care staff really, they're there to build relationships and to help you reconcile. I. Whatever beliefs or concerns you have, they aren't coming in to save you. They're not coming in to do these things or convert you. Correct? Right.
Yeah. And so, um, and great, you're Catholic, you need a Eucharistic minister, let me call the parish and have them come to see you, because sometimes parishes are busy and maybe you don't know, or maybe you're so aged, you haven't gone to that church in 20 years, but you're a member, you know? Mm-hmm. Um, so it's interdisciplinary.
We have music therapy, massage therapy, nursing aid, and then we have volunteers. So we have volunteers that take care of people's pets. We have volunteers that will sit and pray the rosary with people. We have volunteers that, um, are working in our office setting. So it, the thing about hospice is it, it is nobody ever wishes they would have waited.
They always wish they would done. Yeah, because it, you're met with so much resistance, which I didn't even consider, so that's very interesting. Yeah, and I think us common folk feel like hospice is the last resort. We're doing everything we then to avoid that. Yeah, because maybe it means the end of healing or cure or recovery in some way.
But they're a fighter. They're fighting. They, they aren't. Exactly. Yeah. However, and we're independent people and more emotionally intense at that, and private and feeling strong and, um, protective of ourselves and our people more than any other time of life. Right? So, of course we want to keep the outsiders out in the inside.
Yeah. But really if you've never been through this before and pro every death is different. Every circumstance is different. So even no matter how many times you have been through this before, you don't know how to navigate. Yeah. But we do, and that's so fantastic is we do know how to navigate that. And from the, the standpoint of like, oh, you must be an angel, or, oh my gosh, that must be so hard.
Yeah, no, maybe, I mean, it just kind of depends. Um, I have cared for a lot of our staff, family members, so, um, we just had a person who actually signs people up in the hospital for, um, hospice care. Her father passed away and she had been his caregiver for a long time and he had been ill. Um, but it was a sudden illness that happened.
Um, I've had somebody, one of our grief counselors several years ago, lost a brother and he just did not. He just kept living and it was so hard because he was, he, he was just, it was a very slow decline. It was very hard for them. Mm-hmm. Um, it doesn't matter what their role is in our organization, when their person is dying, they have the same questions, they have the same concerns.
Mary, I'm not sure about this, or. Um, I don't know. You know, nobody feels like they do a good job. Nobody feels like they're doing the best they can. And so to tell them, no, you're, you're doing such a great job of taking care of your dad, or no, this is exactly what your brother would've wanted. Um, it's different.
And I see this from the grief perspective, having lost my father a couple years ago. Um. To be providing that support to somebody versus be the person who's receiving it. I apologize, that's my ring. I gotta turn that off. But, um, it's different and it's different on our side too, so, um, yeah. You can't get to the thinking part of your brain when you're full of emotion and when the person that you love, you feel like you're losing your grip on, or the end is near.
Yeah. You're not in the thinking part of your brain. So a little guidance and support from a loving person who's a little more removed is beneficial for everybody. That makes perfect sense. Um, I, I love it. I've been able to experience death and dying a lot in my life, including being there when people have died or having some very final, final visits with folks.
Um. It's beautiful. I guess my mom taught me that at a, a long time ago, even when I was young and scared that mm-hmm. This is a very special time. The in-between time is a very magical time as well. Yes. So, um, you're right. But we spend our whole life trying to avoid it. So when it comes, we we're, we don't always know how to accept it.
Yeah. And it's funny that you say that about your mom because I remember when I was a sophomore in high school, my grandfather was on hospice care and. He, he was such a strong man and he, they, they had this beautiful old home, beautiful, like, I mean just like Victorian type house. And so the, all of the bedrooms were upstairs, so his hospital bed was in the living room.
Um, and I mean, there was almost like he had an office that had closing doors and they had this formal dining room, and all of a sudden my grandpa's in the front room. And we got called to the house more than once. Like, okay, today's the day. So my dad would go and his sister would call and he would, he would show up.
And I just thought, what the hell are these people doing? Why is my grandad like in this space? Just like we're all watching him die. This makes no sense. Um, so people, I've heard people like you say, I had this great experience with hospice, or I, I've learned about death at a young age. And for me, I was just like, what is happening?
Like, he's not an animal. Why are we here? Mm. Um, and now that's all I do, you know, is kind of work with people in their homes and kind of normalize that a little bit. But yeah, it's so culturally it's such a weird thing. Yeah, I guess I was lucky. So I was 13 and my grandpa had cancer and um, we were very close.
He grew up, I grew up right next door to him and um, my parents were divorced from a very young age and he's my dad's dad. So he sort of like took a real roll with me and um, I had a track meet and my mom said, I want you to shower and eat 'cause you've got something to do tonight. And I didn't know what it was, so got myself ready and then she said, you're going to your grandma and grandpa's house.
My grandpa had taken his oxygen off in the night he had young cancer. 'cause he was ready to go and the hospice nurse was a friend and my grandma said, no, no, no. You know, they put it back on and the next morning they had a conversation. Yeah. And my grandpa said, I'm, I want to do this. I'm ready to do this.
So we gathered the family. He had eight kids. Yeah. Um. So all the kids and the spouses and then I was the only grandkid there 'cause I was the only local one. We went and we sat around his bed. Yeah. And I was the last person he said goodbye to. Right. And we did listen to that breath. Yeah. And it would stop and we would hold our breath and it would start again and we would all exhale and Yeah.
Um, but it was, you know, a matter of hours. But the, the thing that happened that was so beautiful, Mary, is that. When his breath finally did stop, I don't know how long it was. This could have been 60 seconds, or it could have been 15 minutes, but it was like, um, silence. There wasn't crying, there wasn't anything.
It was like I was staring at his body. I knew that was just a body. Yeah. I knew it was gone. It was just the body. And it didn't make me sad because I felt him all around us in every part of that room. Like, like, like what? A, a gas or an air, like, I can't describe it, but like he was just there. We all felt it.
Um, the window was open and he had these homemade wooden chimes that he had made and the chimes started raining. And then finally somebody was like, his chimes are ringing up to heaven. And then we did that, our thought. Then we set a prayer. Yeah, yeah. Um, and then we started crying. But it was this very long pause of perfect peace.
Even from something that scared me, you know, or something that was terrible and sad and I was gonna miss my grandpa and I didn't want this. Uh, there was a moment of like perfect piece, which felt like I said a really long time, and it could have been a really short time. I have no idea. Yeah. My lead social worker talks about that and there's a poem that she has that she's read and it talks about exactly like that.
And she tells people as their loved one is approaching death. Do not rush. Do not stand up. Don't call the funeral home. Don't call. Do what you need in that moment because it is a sacred moment. Um, and just really slowing down on that time with family. Stand with your grandfather, you know, is so important, right?
So I'm glad that you have that. Oh my God, it was beautiful. And then there was crying and hugging and moving and calling and, you know mm-hmm. That that all happened. But first, no. It wa it was, it was beautiful. What are some of the most common fears or emotional responses that people have when they know that they're dying?
I think I talked to you about this when we had coffee, um, people. In my experience, right? So I'm only one person in one little small place. Um, the thing that always stood out to me, there always two things that stand out to me. There's always one story. There's always a story that is so important and I tell it over and over and then there's always, I'm going to miss you so much.
And from my perspective, I'm like, miss, you're not missing. You're, you can't feel, you know, like whatever those beliefs are, I'll miss you. You won't miss us. Yeah, yeah. But it is like, Heather, I am going to miss you. I just don't know what I'm gonna do without you. Um, and so it's not even like a, oh, I, I can't believe I'm gonna miss your wedding, or I can't, I'm not gonna be able to watch you grow up.
It's like. I'm going to miss, you know, I'm going somewhere and you're not coming with me this time. Yeah, yeah. So it's always that, that was always, um, so interesting to me. But then there's always a story, um, like I had this woman once and she had this beautiful mid-century modern house and she had this beautiful furniture and.
Her life didn't start until she divorced her husband in 1963 or whenever it was. And that was not common. And she had, um, children, sons, um, but you'd ask her and any question came back to, yeah, that was all possible after I divorced my husband. Hmm. Um. Her moment. Her, yeah, that was her moment in time.
Stella gets a group back moment. Yeah, yeah. Or like Ella gets a group back or just kind of like, you know what? My boss said this and I told her that, and then I was able to be promoted. Or there's always something that they are so proud of and it could be something with their children. It could be finding their spouse, it could be anything but.
It's the fact that they're going to miss their people and also remembering whatever great triumph they have in their life. Um, and it's a internal personal turnaround of transformation of sort a decision to do something differently. Correct? I mean, immediately sobriety comes to mind for me, of course, and my first spring break and this very sad moment of Jimmy Buffett in the Sloppy Joe's bar and during SAR own pool and asking my husband how we're gonna do this.
Him being my rock saying I have no idea. Yeah. Me realizing, oh shit, it's on me. I'm gonna lead this change. 'cause I'm the one that's stitching the drink and I am not gonna be sad when I do this. So, um, yeah. Taking a walk. I have a moment. Yeah. Like that with the sobriety? Um, yeah. Our first wedding anniversary that we celebrated where I didn't have a drink, I was just, and it was maybe, um, my anniversary date is, my sober date is March 21st and my wedding anniversary is May 16th.
And so I was just like, I'm not gonna have a glass of wine at dinner. I'm not gonna have a, like, and I asked 'em to make me like a no HETO or something, and they didn't have. Simple syrup or something. I was just like, what am I gonna do? I know. Like, you can't make, you're gonna have chocolate milk. What is gonna, you know?
Right. This is, I know, I hear you. Um, I'm remembering now your sobriety date is my birthday. So you just Oh, yeah. Passed another milestone. So good for you. Yeah. Yep. Um, how do you, how do you support someone in accepting their death, especially when they're struggling with denial or fear? Oh gosh, I. I think that's an interesting question because I, I think about how our patients often, it's like, don't tell mom you're from hospice.
Mm-hmm. You're not giving up. And my answer to that was always Okay, that's fine. I won't tell her I'm from hospice. And I would say, hi, my name's Mary, you know, I work here. Um, tell me about what you know about your illness. And I would just ask that and they'd say, I'm dying. Mm-hmm. It's the, yeah. I was gonna ask next, like, how do the family dynamics show up here?
It changes, um, and complex relationships are something that are so important. Um, and in my own grief, I, you know, I, um, I lost a brother. I say brother, but I was raised with a stepbrother and he was killed in Iraq. Mm-hmm. Just right before his birthday on July 3rd, so, you know, happy stars and stripes and American flags everywhere.
And my brother was killed in a war for no reason. I, you know, so I've got that. I've got a, a, a girlfriend from college that always drove me absolutely insane and I thought she was nuts. And she died by suicide on, uh, December 23rd, a year. Um, and then my dad, who I, I was incredibly important to me as a young child.
And then as we got older, it just was like a really weird relationship. So. For me, I think sometimes my husband, I'm like, like at, at dinner this week, I said, you know, I really miss my dad. And he was like, I don't, I don't really know what to. Do with that. I said, well, don't get me wrong. If he were alive, I wouldn't be getting dinner with him.
I don't wanna get dinner with him. I don't wanna hang out with that girlfriend. Um, mm-hmm. My brother I was raised with, but my parent, our parents had been divorced for some time. So all of these disenfranchised grief, um, which is a grief that's not readily recognized, um, in society. Um, so family dynamics, it can be everything from.
My mother is who I want to be. I have the best mom she is. She's taking care of my grandkids. She was with, or her grandkids, my kids. She was with me when they were born. Um. You know, you have these great relationships and then you have these other relationships where it's like, my dad was not a good person and he never took care of me, and why do I have to take care of him right now?
So with each death, it's all very different based off of the relationship and how that works and the number. Of ex-wives that I've seen take care of their ex-husbands. Um, they shared children, they shared a life together, and I've had women tell me how healing it is for them to be able to provide that care to those men.
Mm-hmm. Um, other women would say like, yeah, good. Go, go to the hotel and die. I don't care. You know, and nobody's right or wrong in that. It's all, um, it's all okay. So, yeah, it's, um, helping people come to terms with it. I've, I believe oftentimes people are at terms with it, and I always say, I've never met a dying person who isn't.
Ready to die. Why By the time you get there, they are so tired. They are exhausted. It just goes back to that, I'm gonna miss you. I'm gonna, I don't want to leave you. But they're tired, you know, and they, they understand what's happening and this earth isn't for them any longer, you know? So I feel like, um, until they get to that point, the supporting is listening.
There's no right or wrong. How you feel is exactly what you should be feeling and and where you should be right now. Mm-hmm. And the same goes for relationships. You know, if you have that great relationship with your mom, I always will say to people, I am so glad that you have that. I am so glad that you had a good mom, and I'm glad that you get to be here with her.
Um, and if people are frustrated and not to make this like gender divide of like mom and dad, bad dad, good mom, you know, um, let's say you have bad mother. I am. I'm so sorry that that's happened. And, um, tell me what you need right now in this moment. And giving them permission, you don't have to take care of her.
Mm-hmm. Um, because I think, so oftentimes people are, but that's my mom, you know? And you, you see this in sobriety too, right? Like, how can you end that relationship with that person? And you're like, it's me. I like, I, you know, and you've talked about this, like your lifelong best friends that you just had that connection with.
It's okay to separate that at a certain point. Um. In some of these broken relationships, society may tell you that you have to do something, you don't have to do anything. And that's kind of where, going back to social workers being rebels, or at least me being a rebel social worker mm-hmm. If that's a relationship you have with your parent, I respect that and I see that, how can I help make sure that um, he has what he needs as he dies.
Right. Yeah. I appreciate that when you said. Ready when the time comes. That was very comforting to me. Mm-hmm. Also, I know sometimes people are like, oh, oh, that poor little lonely old man. Mm-hmm. You know, in the nursing home or down the street or his, his family never visits. How sad, where are his children?
And I'm always like, you have no idea what kind of choices that man has made in his life that has brought him to that position where people are not visiting. He may have had something to do with that and we don't, we don't know all those things. But feeling pity and sorry for him is not the only response to that.
There could. Any number of possibilities there. So it's like if people are older, all of a sudden it's sadder, but we've, we've made our life and our choices our entire life, so Yeah. And sometimes it is sad perhaps per, maybe his family is gone or you know, whatever, who knows. But it's not only that because people don't just change when they're studying to die.
They've lived a certain way that brought them correct. And that is something as a social worker. When I interview social workers, I ask them how they respond. And same thing for spiritual care staff. Okay. This daughter wants you to come in and anoint her father. Her father stopped believing in that several years ago.
How do you work with the daughter? Yeah. Um, but like those belief systems and those things, it's just all. It's honoring those people and they will be who they are until the moment they die. And that's the beauty of life, right? Like, I am Mary Willems, this is who I am. Yeah. And I'm gonna act that way until I die, you know?
And so unfortunately with that though, um, I always would tell people too, when everybody doesn't sit up straight and act right, because somebody's dying. Mm. Mm-hmm. If you don't like your brother, guess what? You and your brother are gonna like come to blows at some point because whatever the worst, you know, characteristic that you have, it just blooms, you know?
And that intense or everyone's highly intense emotional, yeah. Health and unhealth, I mean, even the healthiest people. There are still those triggers there, and it still just blooms. Oh, just getting together with immediate family. I always say here, I'm an award-winning Silver Life coach. Right? Yeah. Put me with my family and I'm a bratty, entitled 16-year-old girl.
Yeah. Well, my therapist always tells me I'm a great social worker, but that doesn't mean that I'm supposed to be my family social worker. Right, right. You're a social worker. Guess what? When you're at home, that's not who you are. Right. Exactly. I always say, if you think you're healed, go visit your family.
You'll see, you'll see where you still have things to work on. Right. It's a holiday for God's sake. Yeah, exactly. Holidays. Yeah. When you said that, actually I have a friend, my prom date up here, a love of mine, um, fell off for roof and died on 4th of July. And so when you had your 3rd of July, I'm like, it's the same thing.
It's like my dad, speaking of my dad, he used to make jam. He made a jam once called, born on the 4th of July, and I thought that was the cutest name. Yeah. For Jam. And I'm like, and now I have a friend died on the 4th of July. Like that doesn't have the same ring to it. Like I hate that. Especially there's the fireworks, the like celebratory thing.
Yeah. And for war in the fireworks and the sounds that just feels like PTSD. Yeah. And then of course lost my dad around Christmas time too, and it was a favorite holiday of his in a time. We were always together, so, um, yeah. Yeah, the hol the holidays can bring up stuff anyways, but especially when it's around an anniversary, it's, and this expectation of joy and celebration and walking alongside is the grief.
Yeah. Yeah. It's hard. You know, I think, um, yeah, just all of that. And I actually make jam on the 4th of July usually, so, oh, I love that. Um, my, to get away from all of the fireworks and all of the American flags and all of the things, I'm like, what can I do that honors. How I'm feeling right now. Um, and so it's not like my brother cared about blueberries or ev we ever made jam.
It's just I can spend that time in nature. Mm-hmm. Sun. Um, and then I go back to my kitchen and I can spend time. Listening to music or not listening to music, but it's just the thought that I am remembering him on that day and remembering our family as it was in that moment. Um, because it wasn't that when he died, you know, I hadn't seen my stepmother or my other brother for a while.
Um. Just all sorts of things. But yeah, disenfranchised grief is a very real thing. And if people are listening and they've never heard of disenfranchised grief, I would, um, encourage you to look it up because similar to like, well that's my brother, but it's not my brother 'cause he is my stepbrother and they're divorced.
Or miscarriage loss is one where it's like, you know, maybe you miscarry very early in a pregnancy or you lose a coworker or a pet or something. And it's just like, why are you so. Why is this so much for you, this grief that follows this relationship, but it is so individual for each person that it's important to honor that, um, no matter what it is, because what you're feeling is what you're feeling and it's, it's happening, you know, and it's still grief and you're allowed to feel that.
That's so true though. I do have a friend that just went through a miscarriage and my husband just lost a coworker. And it is that thing like, are you that close? Are you close enough? Is it like, how do you. Navigate this. So that's such a good point. And I want a jar of your jam and you can name one jar for me, Gabe, on that day.
I'll just love it. That full circle story of Yeah. I, in the 4th of July is really, really sweet. Yeah. Um, what advice do you have for people who wanna talk about death with their loved ones, but don't know how to start? Oh gosh. Well, healthcare Decisions Day was actual healthcare decisions Day is an actual thing.
And I think it was this week actually. Um, I just feel like it's important to ask those questions like, how are you feeling? Where do you see this happening? Do you think this is, is this normal for you? You know, or I'm worried about X, you know, like whatever it is. Um. It's just important to have that conversation, you know?
And I always, um, my husband, my husband's always like, you've really taught me. Like if I'm thinking about somebody, I just send 'em a text message, like, Hey man, how are you doing? I've been thinking about whatever. Mm-hmm. Um, and I think it's the same type of thing. If you have that thought, chances are somebody else is also having a similar thought and the importance of asking those questions, you know, just.
How did the doctor's appointment go? That doesn't sound normal. Did the doctor say that's normal? You know, like, or just whatever it is? Um, and we all know each other individually. Um, anytime a friend dies, anytime another family member dies, approaching that. I know when my father died, my husband, um. He's got a very conflicted, he's got two brothers, um, and, uh, is essentially estranged from one of the brothers, and he's the oldest.
And so he's the POA and he's the executor of the estate. And he said, you know, Mary's dad died and she spent like three hours at the funeral home with her sisters like. She was there for three hours planning and they didn't have any prearrangements, they didn't have the finances for it. I was like, what do you expect us to do?
Because I don't wanna have that conversation with my brothers. I don't want to be there with my brothers. You know, the one brother, um. Is very sensitive, very emotional. My, my husband has like an engineer's brain. Everything's very analytical. And then there's this other brother who they just don't talk to, but is still engaged with their parents, you know?
So I think anytime you have something happen in your orbit that you can point to and say, what would you want to have happen here? Or, what do you expect me to do here? Mm-hmm. Um, or if that were you in your illness, how would you want to handle that? I. You know, um, because it's just a conversation. It doesn't, it's not like a, Hey Heather, you're dying tomorrow.
But like, Hey Heather, my girlfriend had this happen and like. What do you think? Like what do you want? Yeah. You know what is totally, I'm working on an essay right now called Bury Me Beneath the Trees, so mm-hmm. My family will know what to do with me, right? Like mm-hmm. Because the worst thing is what the family wants to do, right.
By the loved one. Yeah. Right. That they want to do what that person would want, but we might have different interpretations of what that is. Yeah. If the person's gone, it might look a little different than they thought or something, so. Mm-hmm. If we have directions, instructions, ideas, conversations ahead of time, that's what makes you feel good is like, um, I was lucky enough to have two grandmas.
One lived to 86 and one just passed away a couple weeks ago, 101.7. They were set. I mean, they, they had dwindled their life to what it was. They had gotten rid of the things they had to get rid of. They had had the con, they did all the things and they had their checklist. This is what they, I want at my funeral.
This, this is the casket. I want this, these are the songs. These are the readers. This Seal g here's my obituary. You know? Yeah. And it's like, and everybody gets an envelope, so, yeah. Yeah. It's like, that is, that was so helpful. That is helpful because no doubt we were doing, we were carrying out exactly what they would've wanted and, and because we knew that it was easy 'cause they were prepared.
And not every death, of course, is like that. Not everybody is prepared, but if you love your people, that is a thing you can do for them is to let them know what your wants and wishes are so they can do Yeah. By you, which is what they will wanna do. Yeah. Yeah. I always tell my husband and my kids like. I, gosh, I don't even know what we were watching recently.
Um, but somebody was so upset that they weren't with their person when they died, and I just said, don't leave me someplace and never come to see me, but like if I happen to die by myself. Just know right now that I don't care, you're not coming with me. Like sometimes I think people prefer it, sometimes people leave.
Yeah. They, for all those people to leave the room so that they, they don't want to in front of 'em or they don't, for whatever reason. We see that all the time that happens. Yeah. And sometimes you're in bed with mom holding her hand, taking her, singing her song and rubbing her head. It just, it depends. Yeah.
But I think those are the moments where it's not like a, oh my gosh, babe, when I die you need to do X, Y, Z. But it's like we're watching something on tv. This person is so extremely distraught and I say, please don't be distraught about that if that happens. Right. That's great. So bring an everyday conversation and it can happen before you're actively dying.
We're all actually dying. If we're alive, we're, we're in process of dying right now. And similar to like how you hire a birth doula and you have a birthing plan and you do all of that, or you plan for taking your kids to college, or you plan for buying a home or having your first child, whatever it is you, we do these plans is just another thing, you know?
Mm-hmm. It's still like when I sit and think about it, yes, I become anxious if I think about my own death or what may come. Um, but it is so important to have the conversations because if it's only in the shadows, if we keep it in the shadows. Yeah. I love that. Bring it out into the light. Yeah. Um, what does a good death mean to you and how can families help support one?
You say a good death. A good death, yeah. Um, I think it's dying the way that you lived. Um, I, you know, I have been in our, we have a 14 bed inpatient unit, so we have a unit where people come, maybe they've come off of life support, maybe they've come off of dialysis. Maybe they're having extreme. Symptoms. Um, so they come in and people don't always die there.
Sometimes they go home. Um, but we've had instances where like, I mean, people are just rowdy. They've got every grandchild this person has, they're running in circles around the bed and it's just like, oh my God, what is happening in room F? Like room 14, and they're Italian. Let me guess they're Italian.
It's like, well, we can ask them to ensure that they're not. Disturbing other family members. But is that how the patient lived? Yeah. Yeah. If that's how the patient lived, they will become more anxious. If we clear out the room, it's completely silent. The lights are up, you know? Um, we need to be doing whatever it is that those people.
Appreciate. I don't like noise. I wouldn't care if I ever saw my grandchildren if I were in that PO and I have grandchildren, so it's okay to say, but like they don't need to be with me. You know what I mean? Like Right. Keep it calm, blow some. Yeah. But some are, you know what I mean? Distraction or whatever.
Right. I love that. It's a good death. It's not live like you're dying. It's like die, like you lived, die like you were living. Yeah, yeah, yeah. And then of course there's pain management and symptom management and all of those things. Mm-hmm. Um, which, you know, as a, a hospice social worker, I can tell you all about facial expressions and breathing patterns and all of that.
But, um. Essentially, if they look like they're resting, just trust that they're resting and treat them the same way you would if they have never missed, uh, one life to live. Keep putting one life to live on the tv. Mm-hmm. I mean, that's truly what it is, is, um, to honor who they are and to honor, um. You know, your family as a whole or your, and when I say family, I mean chosen family as well, you know?
Mm-hmm. That makes so much sense. I love that. What kinds of regrets do people express at the end of life? Um, I mean, everything you would think that they would, you know, I mean, where they spent their time, what their focus was, um. And some of those things they may not, um, it might not have made such an impact on the person that they're concerned that they had that impact on, you know, um, so maybe they're concerned about a certain relationship and maybe the other person doesn't feel that way.
Um, but I think the regrets are exactly what you would expect them to be, just as far as, um, how, how they lived, how they spent their time, who they were with, things they did or things they didn't do. Both. Both. Okay. Both. Um, you know, and we see a lot of times. I mean, veterans are a good example of this where they're, um, in conflict and they're doing what they need to do to protect themselves and to protect their unit.
And, you know, sometimes those things can kind of pop up in their heads. Um, you know, I mean, talk about us with sobriety. I mean, years wasted. You know, with that, and it's not, I mean, thank God we're sober, right? Like, thank God we were able to like, do that. But, you know, it's not easy. It's not an easy, it was like a very intentional practice that we had to do.
Um, so addiction, you know, uh, not being present for children, you know, uh, any of those things, you know, conflict, just any, any of that stuff. So it can be what they have done or. The absence of what they wish they would have been able to do. Mm-hmm. Kind of going along with that, have you witnessed powerful moments of like reconciliation or healing during your work in the end of life stages?
Gosh. I mean, I think the closest thing I. To that would be what the example I provided of like ex-wives taking care of their, their partners or their children's father or mother or whomever. Okay. Um, usually those moments happen as a result of somebody stepping up and healing them themselves. Like, I'm going to do this because it will bring closure to me.
Um, I've seen some of those things happen. Um. But no, nothing, nothing else really comes to mind, honestly. Yeah, yeah. No, that's funny. I'm smiling because, just to give you an idea of my dad who died unexpectedly, um, let's say he wasn't in the best of health, but it was still, uh, quick, same came as surprise, but, um, at his burial was of course his mother and his, um, seven siblings and his two ex-wives.
So around the circle, I'm like, well, that's my dad. You know what I mean? And the two ex-wives, it's just kind of funny. Well, it's funny because my dad, his ex-wife, my, my stepmother was like, we're not having Afu a full funeral. He his siblings. My siblings, your siblings. Basically it was what that was. So we didn't get to have that tradition of having, you know, he coached Little League and he was, he talked to people at the grocery store for like.
30 minutes at a time. You know what I mean? So we didn't get to receive those people. Mm-hmm. Um, and I was talking to one of my dad's ex-wives, 'cause my father had been married four times. And I said, I, the one who is the mother to the brother that I've talked about, I said, I don't know. I just don't know if he thinks people are gonna be talking about him.
And she said, Mary, if people are gonna talk about your dad, they're doing it right now. They don't have to do it at a funeral home, you know. You're like, well, you just don't get to witness it. Right? Yeah, you're right. You're right. Thank you. You know? Oh, funny. How do you process grief, given the nature of your job?
You have your, um, 4th of July jam making. How else? Um, gosh, I think it's just an actual, sitting with it when you have one of those feelings, um. Just to sit with it and acknowledge it. You know, for my girlfriend that I mentioned, um, one of the last conversations I had with her, she was looking for a, a grateful dead t-shirt.
Right. Because, and when I met you, you were like, of course you smell like patchouli. But like, I, and Grateful Dead is like right on topic here, right? Like very, yeah. Yeah. So my girlfriend was like, she had this shirt that she like wore down to the last thread. And my husband is a, a grateful dead. Um, he is like a deadhead and deadhead.
So look where I buy these shirts for Andy, and I couldn't find it. And one of my friends, um, purchased me the same shirt I had mentioned when I was thinking of her once, like, gosh. Uh, one of the last things she, we talked about was this stupid shirt and I can't find it anywhere. Um, and one of my friends bought me the shirt, and so I will wear that shirt at certain times when I'm thinking of her.
Um, she had the biggest smile. I mean, this girl you could see, like, you could see her teeth at midnight. It did not. She just like had this huge smile. Um, and I was wearing that shirt just to run to the grocery store one day. And I'm not kidding you, there's this older retired gentleman that works at one of the stores near my house, and he is, like, he said, he mentioned something about my big smile.
I don't really do that, but I was just like, oh,
loved, you know. And so I think it's just looking at photos when you think about it, acknowledging it, um, you know, just as it comes, doing something to honor them or to honor where you're at with that. So, I mean, that's, that's how I do that. I tend to, with the patients I've served in the past, I may get a pie crust recipe.
Um, going to the, I, I'm somebody who enjoys going to the cemetery to see, to, to visit the person or see the person. Um, and even if that's just a three minute trip out there to say, Hey, I'm thinking of you and just to sit, you know, that's good for me. You know? So I think it's just finding a way to continue to carry them with you, um, despite their absence physically.
Mm-hmm. I love that. Such good, such good tools. How does spirituality or the absence of it affect how people face death?
Gosh, you're like next. Yep. Pass, pass, smash. Yeah. Um, I didn't prep you at all. Just, I mean for the listeners so they know I didn't prep. I'm just pulling. No, I always tell it's funny because, you know, religion and spirituality, they can be so divisive. Um. Mm-hmm. But it is a tool. I have gone to social work conferences and they have said, if you're not assessing this and you're not utilizing this, it is, you're, you're missing a tool for your, if you're truly providing person-centered care, you're missing out on a huge part of that person.
Right. Um, so I. I, when I was seeing people in the homes, I always look for context clues. You know, like what are the, what's the religious art in the home, what religious text is in the home. Um, just talking to them about their belief systems. I, it, it can be a great comfort to them. Or as I mentioned, our spiritual care staff will sometimes come in and help them reconcile what their beliefs are, um, as far as maybe they feel.
You know, they're, they're terrified about something or they don't feel like they deserve, you know, to have that redemption or, you know, whatever it may be. It's just talking to them again, honoring who they are, honoring what their faith is, honoring what that practice is. Um, and it can be, it can be, most of the time I have seen it be a great comfort to people, you know, for them to have those beliefs.
But there's also, there's also plenty in that where. Um. Certain family members are of a strong faith and other people may not be, or friendships or relationships like romantic relationship. You may have a strong faith and maybe your partner does not, and the concern that comes alongside that, but that's the beauty of hospice is having that spiritual care team member who can really go in.
And it's not just that we're focused in on the patient. Um, in that type of situation, the, the spiritual care counselor could sit with the spouse and talk to 'em about that. I've done visits with people at a Culver's, you know, like, just kind of like, okay, you don't wanna talk around, mom, let's go here and we'll talk here.
You know? That's fine. Um, but yeah, it, it is very dependent on the person. Mm-hmm. That makes sense. Are there any profound or surprising lessons you've learned from the dying?
The thing that sticks with me is just that one story piece. You know, it's just like, uh, the having, um, moments of, I don't wanna pride sounds like a not great word, but I wanna say like main character energy. Yeah. Yeah. And like maybe then we should look to have more of those main character and character defining moments.
Yes. Yeah. And just the acknowledgement that we c we can and we have done that and we can, and we have like we can and we could do it again, you know? Um, but yeah, I think that's the thing is just, um, I. The stories that people tell the significant moments in their life. Um, and honoring that and knowing what that is.
And it's different for everybody. Some people, it's very family centered. Some people it's very career centered. Some people, you know, it's something like sobriety or it's something, but there's always something. There's always something there that they are just proud of and thankful that they were able to do.
You know? So acknowledging that I think is really important. Yeah, the moments for me, it's already coming up. It's like, um, a ri I'll listen to my intuition, first of all. Mm-hmm. And a rise up. Mm-hmm. To be that, where I think mostly in our life, we go through the motions or we do what we think we're supposed to do.
It's like, um. We hear our tuition, but we don't really wanna listen to it. 'cause it could be, it's pretty inconvenient, let's say. Yes. Yeah. We don't feel the way we think we're supposed to feel about something or we're not going along with something could mean a lot of consequences that we don't really want.
Yeah. And it's doing it anyways. Right. When I'm thinking about those like rise up main character, life defining thing. Yeah. Saying yes to shit that scared me. Yes. Yeah. Or saying inner knowing the stuff that scared me. Tapping into that other knowing, inner knowing and letting it, and letting it be. Yeah. And, um, voicing it, ing it out loud and making, taking that action.
Right. Mm. Even if I had never done that before. So that's huge. That's totally huge. Okay. Um. I'm gonna get to reflections in closing, but have I missed anything? I don't think so. I I don't, you're like, I feel like I've completely been drilled. Thank you very much for no prep. Um, you've already mentioned this, so I, I wanna know, um, if you could speak to every listener right now in preparing for death, what would you say?
Prepare for death. I mean, just do that, you know? Um, do we have a written plan? Do we follow a template? How do we do that? We do. I mean, my organization can hand people plans on some of those things, you know, as far as like positions and, you know, advanced directives or something thing. Um. It is so important to have a decision maker, like a legal decision maker, um, written down on paper, you know, so I think that's a big component.
People always talk about like last will and testament and that, and truthfully. Unless you have like ample resources, you are likely not going to need that. I mean, it's important to have those things, but you know, your life insurance, you have, you know, designated people for that. Your home, hopefully you have, you know, those sorts of things in place.
Um, but the decision making capacity is so important. And I know you're in Illinois, I'm in Indiana. We have a hierarchy. Yes. Yeah, yeah. Or international, hopefully. Yeah. Yeah. So in Indiana, we have a hierarchy that goes through, if you don't have a decision maker, um, selected what that looks like, and it its spouse, adult children.
But like in your instance, you know, your dad had, um, seven siblings or eight siblings. And so it's like if I can't come to an agreement, thankfully I only have two sisters, so there's going to be a majority there. But if there's not a majority and there's conflict, it really is just kind of like a majority rules sort of situation.
And then it goes down the list from there. So if you have a fiance that isn't legally bound to you, you know, and you want that person to be your decision maker, it's important to put that in writing. Otherwise, it. Brother, your mother. Mm-hmm. Yep. And plenty of people don't want their mothers, their brothers, or their kids making choices for 'em.
Right. So I think that is probably the biggest thing is to have that in writing, um, and to have a plan for that. And then the next step to that is to let those people know. What you do and don't want, I don't want artificial nutrition. I don't want that. You know, I don't want to have, um, you know, organ donation is another very big thing.
I lost my brother-in-law about a year ago, year, gosh, it's been two years in August. Um, and my sister was just dumbfounded when they came to talk to her about organ donation. And, uh, they, you know, they make a compelling case. An organ donation is a very important thing, but it, it impedes the way the person passes it.
Um, there are lots of things around it, right? Um, and so, but she didn't know what he wanted. I. I don't wanna do the right thing. She's an Enneagram nine Heather. So she was just like, what do I do? Who do I make happy? I dunno what to do. You know? Um, so once you have that decision maker, letting them know. The, these are the things that I would like to have happen.
A good day to me when I'm Ill looks like this. The location I would like to be would be this, the type of funeral I would like to have might be this, you know, those types of things. Mm-hmm. Um, because people say, oh, you'll know what to do. Your husband. Oh, she'll know what to do. She does it all right. Now she'll know what to do.
Oh, you will go back and forth with a, a highly conflicted mind about wanting to save and wanting to let go, wanting to do the right thing and not knowing what that is.
I'm completely different from my sisters. It sounds like your girls are different from one another. You don't know, like to then come down to they'll know what to do. Everybody's got their own opinion about what to do and it's, they'll know how to argue with each other. Yeah. They'll know to both think they're right about something.
Yes. Correct. Correct. Yeah, exactly. Because I've raised them that way. Yeah. Gram three. No, I'm just kidding. Yeah. Yeah. Same. Yeah. Yeah. So have a plan, prepare. Have a plan. Write it down, let it be known. Talk about it. Yeah. Amazing. What legacy do you hope to leave behind through your work? Oh gosh. I, my thing with anybody is I just, I just want to approach everything from kindness.
I want there to feel a sense of. I want everybody to feel welcomed and understood, heard and understood. You know, so oftentimes people do not think, they don't, people don't listen to 'em. You know, if you think about aged people like your grandmother for instance, she has lived her life and they almost become like little babies again, where like you're treated with kid gloves that you're not listened to, you're not heard, you're not understood.
Oh, you don't know, or you would've never done that. Let's do this instead. I think my thing is I want people to have had the opportunity to be heard and understood and to feel that sense of everything was approached with kindness and trust, you know? Yeah. And uh, I think the other thing is even as, um, parents' age, right?
At this age, our, my parents are, if you still have them, they're aging, right? And it's like, um, letting them do what they want. Yeah. Even if you disagree, you don't have to agree with it. And oh, even if they're putting themselves in a place of danger, um, and not safe and mentally they're, they understand that, well then that's their choice, right?
I mean, hopefully they're not endangering other folks, but they get to make those decisions and you don't have to agree with 'em. So I would imagine, especially in a dying process of like, we're gonna honor the patient and the patient's wishes. Mm-hmm. And the kids don't have to agree and the spouse doesn't have to agree.
The social worker doesn't have to agree necessarily. We can still honor that person and what they want. Yep. So beautiful. Thank you. Thank you for your time today. Thank you for making a conversation about death and dying. A very approachable, good, enjoyable, even enlightening. Um, and so wise, your experience, your kind heart, your rebel social work heart, I love, uh, the, the rebel social worker and me season honors the rebel social worker, and you having somebody who's lived through a lot of personal grief.
Thank you for sharing your personal story. Yeah. You're being both, um, the personal touch and the professional touch, and it's been very educational and very enlightening, but also very personal and so I appreciate you so much. Thank you, Mary. Happy, happy to do it.
