SPEAKER_03 0:00

Welcome back, everyone. Thank you for listening to End of Life Conversations. Today we are speaking to an author and poet, a mother, and also someone who spent five years, I think, caregiving her husband who had uh early onset Alzheimer's essentially. And what I really hope that you can take from this podcast is how we can support caregivers who go through possibly years of taking care of a loved one when it looks kind of normal. Sometimes we see people with cancer, sometimes we see people just being, you know, along on their journey of eldering, but sometimes their sick one doesn't look that sick. And so how do you talk to somebody who's doing the heavy lifting by themselves in isolation? But you are there to see them.

SPEAKER_02 0:56

So yeah, it's so important to just be there for people and and to um just give them the support they need. It was no trying to fix it or she does such a great job of talking about how that was for her, how she how isolated she felt because people didn't want to talk about it. And her wonderful ideas about ways to approach people that are in her going through this. So definitely worth your time. Yes, listen to the whole thing. She's got some beautiful work she's doing that we really want to share. So enjoy.

SPEAKER_03 1:26

Yes, I'll see you soon. See ya. Welcome, friends. I am the Reverend Mother Ana Luisa Remindades, and we are looking forward to today's episode. We met Suzy McAnamara, right? McAnamara?

SPEAKER_01 1:42

McNamara. McMara. With my Chicago accent, that's how it sounds. McNamara.

SPEAKER_02 1:47

I got it.

SPEAKER_03 1:49

So we met Suzy a while back and connected deeply with her story and work. Susie is an author, poet, mother of four, fundraiser, lawyer, secular Carmelite, and a widow. In 2024, she lost her husband of 37 years, Bob McNamara, to posterior cortical atrophy, an aggressive form of early onset Alzheimer's. After caring for him for five years in their home. Months before her husband died, though, her sister and best friend, Elizabeth Muslin, died from idiopathic pulmonary fibrosis.

SPEAKER_02 2:29

I was really impressed by that story. It's so moving, and I'm so glad you're here to share it with us. I am the Reverend Waquil David Matthews. Susie dove into her grief and trauma and wrote a memoir, which we're going to talk about, as both a love letter to her husband and to her sister, and to begin a conversation with her fellow caregivers and sisters in arms in the battle of loss and grief. She writes honestly about the physical and emotional challenges of caregiving, which we are all aware of and we love to talk about, but also celebrates the magic of love and connection with the ones she lost and the ones who walked with her during the journey of loss. So that look really looking forward to this conversation. Thank you.

SPEAKER_03 3:09

Yes, yes. Thanks for being here.

SPEAKER_01 3:11

So thank you so much for having me on. This is such a wonderful podcast, and I so believe in your mission, you know, of opening up conversation and about this topic. And I'm just so appreciative of being here.

SPEAKER_03 3:25

Well, thank you. And thank you for your work around opening up the uh conversations about loss and grief. So, will you tell us about what inspired you to do the kind of work you're doing?

SPEAKER_01 3:38

Sure. So, as you said, my husband passed away. It's a form of early onset Alzheimer's in December 20 um 2024. And after caregiving for him in my home for five years, um, there's just very particular aspects of caring for somebody with early onset Alzheimer's. And the caregivers are so isolated as many caregivers are, but there's a particular kind of isolation with early onset because the person you're caring for looks so great. You know, my husband was 62 when he died, he was 52 when he started getting sick. You know, he's handsome and athletic looking and all that. So it really increases the caregivers' isolation because people don't understand, you know, what's going on. Sure. And they also are scared of talking about Alzheimer's. So they don't, you know, that's why I love the your mission because you know, nobody wanted most people did not want to talk to me about it. You know, they're scared of getting Alzheimer's, they're scared of their loved one getting getting it, and they don't really understand when it's somebody so young. And all of that is just so damaging to the caregivers' emotional well-being. And um, so a big part of of the reason that I wrote my book was just to, you know, I'm super honest, it's just that my personality about exactly what happened, you know, during the five years of caregiving. And because I wanted other caregivers to feel less alone. You know, I wanted, I felt like if if if they saw me being so honest and saw the response I was getting, then maybe they would be brave enough, you know, to talk about what they were going through. And I truly believe that conversation and openness is the only way to heal from anything. So that's I was so I mainly was hoping to just open up the conversation and open up the conversation of what it's like to be with somebody as they to accompany somebody when they're in hospice and as they transition to the next life. And you know, I did it twice in one year with both my husband and my sister, both very different illnesses, very different deaths. But you know, I feel like by talking about it, you know, maybe we can make people just feel more comfortable sharing their stories, you know, feel better prepared when they go through it, you know, maybe lose some of the shame that is often associated with any kind of problem that you have. So that that was my motivation for writing it.

SPEAKER_03 6:20

I really appreciate that, Susie, because oftentimes we we center any kind of transition like this on the person who's either sick or dying or has just died, right? Like there's a we make the funeral celebrations or whatever, but we never like take a turn back to the person who has stood with that person through the whole journey. And there is an incredible loss, an incredible fatigue, an incredible, did I do it right? Am I, you know, I'm sure you heard people asking you different questions, or especially I didn't realize it's like your husband was looked well, and so and so people must have been like, she's making too a big deal about it. Like it's not that big a deal. And and that is really hard. And I and I understand, you know, so can you like I'm curious about that too. Like, how did you manage to figure out how to get to this point? Because it is so yeah, it was definitely hard.

SPEAKER_01 7:16

I mean, I think there that there were some people in my world, I'm sorry to say, and sorry that I experienced it, you know, sorry that anybody experiences it, but I'm sure they thought I was exaggerating, you know, and they would, you know, definitely correct me, like, oh, but he looks so good, and oh, he's still the same, and he was not, you know. Oh, he's you know, he's funny. I mean, even up until a few days before he died, you know, people are like, oh, you know, he's gonna be around a couple more years. I'm like, yeah, he's really in the final stages of wow. I know, and part of that is probably their own fear, you know, and their own lack of comfort. But it really, it's just so damaging to the caregiver. You just feel so unsupported, you know, so you know, so isolated. And also, you know, in my case, and everybody who has early on said Alzheimer's in their life, you know, it it really was especially damaging because there were, you know, there was that when I had to take away his cell phone, you know, because he couldn't use it. And it was so frustrating to him that he would, you know, break down in tears or throw it across the room and it made him feel terrible, you know. So I and he couldn't use it anyway. So I took that away and I got a lot of criticism for that. Or this still blows me away. He had to stop drinking, you know, beer because he was suffering from seizures and seizures, I mean, alcohol reached a medication threshold, you know. Um, and so I had to stop him from drinking, and boy, did I catch a lot of grief for that. Like, how could you do that to him? You know, he's so sick, and you know, he's so this is so hard for him. And I'm like, well, I'm just trying to keep him alive. So I mean, I don't know what to say, and uh, you know, but it was, I mean, I laugh about it now, but it was, you know, it was really pretty demoralizing and you know, pretty isolating. And then when I had to stop bringing him, and every other caregiver in my situation goes through this, so they understand. And when I had to stop start bringing stop bringing him to large events because it terrified him, you know, he didn't know where he was or how he fit in, and the loud sounds would actually you know be excruciatingly painful for him, and it was just you know incredibly difficult for him, and so I had to stop bringing him and and I received quite a bit of feedback, let's say yes, yeah, on that. And nice way to put it now. I can laugh, but it was really difficult, you know. It's just very, very difficult.

SPEAKER_02 9:52

It's so good bringing that up, and yeah, yeah, and especially because I know our audience are probably some caregivers in the audience who have experienced that stuff, and so yeah, I'm glad that we can have this conversation. Uh I know this is something we can share as kind of a public service announcement for our audience is that there are now um fairly new um advanced care directives for Alzheimer's and dementia, which um give people a chance if they've got that in their life and they think it's something that's gonna be going on for them. It's funny that Ana Luisa was saying she was having memory issues and she thought, maybe I better fill mine out. But that's just you know, I love that the other day somebody said, Yeah, as I get old, my memory gets corrupted. But but if that's something you seriously are worried about, it they're actually or concerned about it all. There is now a way that you can write down what do you want to have happen at specific uh as specific symptoms show up, you know. And um, which is a really great, great thing, new thing. There's also some stories about people who didn't get what they wanted because of and that's a lot another story, but um you know it's important. And what was important about this one story we heard was that the the woman who she had dealt with her father's um dementia and cared for him and realized it was probably in her for future, and so she f created one of these advanced care directives for herself. And she had the conversations with her family and their loved ones and the people that were gonna care for her. So they knew precisely what she wanted to have done. Um so they were able to then follow up with that at the time that needed to happen. But it's um, I mean, after you know, once you get to a certain point, you're no longer capable or even legally allowed to make some of those decisions. Right. So um it's so important to think about that. So I'm glad you're bringing this to us and bringing this idea.

SPEAKER_03 11:44

Can you well uh can I ask another follow-up question?

SPEAKER_02 11:46

Yeah, please.

SPEAKER_03 11:47

So, Susie, um, first of all, I have a daughter who has a lot of medical conditions, has a hot lot of needs, is also autistic. And so sometimes I have to do things differently as well. And I get a lot of feedback about how you're just not parenting correctly and you're just you know, you're you're spoiling or whatever. All these things. So I I lovely I understand that. So from your perspective, what would have been really helpful for you to hear from others?

SPEAKER_01 12:18

Well, first of all, what I say to a lot of people, if you know that someone in your life is caring for somebody who's sick or caring for a child who has, you know, special needs or any kind of situation where they're caring for somebody, I think it is what amazing an amazing thing you can do is to tell them they're doing a great job.

SPEAKER_00 12:40

Yeah. Just tell them they're doing a great job. It's so simple, but don't you love to hear it?

SPEAKER_01 12:45

You know, because you question you yourself as a caregiver question every single thing you do all day long. And you know, when you're caring, especially if you're caring for somebody with a terminal illness, you are going to fail at some point. You know, failure is in your future. I mean, of course it's irrational to feel that way because you didn't fail, you did amazing, you know. And but so you always have that those guilt feelings, which are once again irrational, but can't help it, you know, and you're always you're always so worried that you're not doing a good enough job. So to have somebody else say, you know, you're doing a great job, I think that's amazing. I also think what I am gonna try to do, you know, now talking to somebody else going through this situation, is before I have to put before I put my two cents in, listen. Yeah, you know, just listen. And it's something that it seems so simple, but I think with that we all, you know, we all struggle that with that because you know, some of it's really with the best intentions, like you want to help that person, you know, you want to fix their problem, which you can't, but you you want to, you know, so you're offering your you know, your advice or your, you know, but how about just listen? You know, let them tell you what is going on in their home, let them tell you, and I need this advice just as much as anybody else. You know, let them tell you what's going on in their home, let them tell you how they feel about it. That's another people always tell you how you feel about everything with the best intentions, most of the time. Most of the time, not all the time, most of the time. So let them tell you, and you know, just honestly, just listening is really the biggest gift you can give anybody. Because many people won't do that, yeah. You know, it it's too uncomfortable for them or too scary for them, or you know, they're fixed, fix, you know, everybody wants to fix, fix, fix. So I think that that's a big gift. But I really, you know, somebody asked me um what she should say to her mother who is caregiving for her father now. And I said, just tell her she's doing a great job. It'll mean the world to her.

SPEAKER_02 14:52

Yeah, that's so great. What a great, great uh sharing. And and you know, I mean both of us are um yeah, spiritual directors' companions, and that's the number one rule is you start by listening and you listen with curiosity and you ask, you know, you want you want to know more, you know, tell me more about that. But not here's how you could fix that.

SPEAKER_03 15:14

It's just such a natural response. It is a natural response, although I so two things. One is we've talked about holding sacred space, holding space for somebody else, right? That's so listening is is is what we're doing, but also if you're if you're asking how are you doing, you just let that space unfold as it needs to. And at the very end, if that person says, like, I wish I knew what to do. And if you have a you know an idea, you could be like, you know, do you want me to offer something? Are you in the mood? Or do you want me to tell you later? Do you want me to email you something? Because sometimes, you know, we do want, like, yeah, I could just offer some information, right? So, but it's it's a dialogue rather than like a pounding into, right? Like, oh, this is for you. You should do this, you should do that.

SPEAKER_01 16:00

You should do that, right? Yeah. So we hear that a lot. And we, I mean, I'm sure I say it a lot. Also, well, one way that I sometimes try to offer advice if the person seems open to it and wants to hear it, is I just say, you know, here's what I did. Here's what I did wrong, you know, here's what actually worked, and then not say like you should be doing this, just like offer that, you know, as like, here's an example, you know, and I had this situation that's similar, and here's how I handle it, you know, maybe that'll work for you, maybe not, but in a in just a non-like directive way, right? Also, one thing I should have added before is when you listen, also believe them. You know, like if somebody tells you that they feel terrible, or you know, believe them, you know, give them the respect of believing what they say. You know, if you if somebody says, like, my husband was so much worse today, or he was, you know, believe them. Yeah.

SPEAKER_02 17:00

Don't argue.

SPEAKER_01 17:02

Yeah, don't argue. You get a lot of arguing.

SPEAKER_03 17:05

Well, argue, or you know, I just I remember I went through a few years where I was really sick and nobody could figure out what was wrong with me. And so I I lost a lot of weight, which in this culture is pretty cool, right? I know. And I remember going to book club and you know, somebody asked me, I was like, How are you doing? I was like, I feel horrible. I can't eat, I can't sleep, I'm just really having a hard time. And she and she says to me, But you look good. And so, you know, so so it does it in that moment. I remember I was like, I feel so miserable. I think it was the last book club I went to too, because I'm like, if you can't hear how sick I am and I've I feel miserable, then and you're just people you're not my people, but never assume that they're doing better, even if they say they're not, because they took a shower and put some makeup on and try to like, right?

SPEAKER_01 17:51

Right.

SPEAKER_03 17:52

So you don't look you don't have to believe you covered in ashes in order to say, yeah, they're actually really feeling badly. Because some of us do it all differently, right? Like, right, we're we're travailing but under cover of something. And so when they say I am really lonely or sad or despairing or exhausted, man, that must be really hard. I am so sorry to hear that, right?

SPEAKER_01 18:18

Right. And thank you for sharing your feelings. I mean, you know, right. I mean, that's a good thing. What can I what can I do for you?

SPEAKER_02 18:25

Right, right. Or better yet, right? Here's what I'll do for you.

SPEAKER_01 18:28

Yeah, yeah, yeah.

SPEAKER_02 18:29

Pack them over and wash your dishes or whatever, you know.

SPEAKER_03 18:32

Yeah, right.

SPEAKER_01 18:33

So yeah, I'm sorry you went through that.

SPEAKER_02 18:35

Yeah.

SPEAKER_03 18:36

It's well, you know what, all of these really hard things in my personal life, and I think like yours, just gives me a chance to like teach others how to do it exactly, right? And so now when I see people who they look great, and then I find out a little bit more about them, they're like, oh no, I've been struggling with you know addiction or depression or whatever. It's like I'm not judging them based on the exterior, their soul is what's having a hard time. And I can I can lean in and be like, oh, I know exactly what this is gonna be like. Right, right. And you too, Susie. You will you will know exactly what when somebody says I'm yeah, caregiving to somebody with dementia, you're like, oh, my lived experience as well.

SPEAKER_01 19:16

Right. Yeah, that's been the best part about, you know, I published my book in June and I've done a bunch of book signings and speaking and stuff. And but the best part is when people come and share their stories with me. I mean, I'm so honored by that, and it's such a gift. And it just, I mean, there's nothing better than you know, having somebody share their story and you feel like you could actually help them.

unknown 19:37

Right.

SPEAKER_01 19:38

You know, I mean, it's really an amazing feeling. One well, your story helps. Oh, thank you. Thank you. Good. I'm glad. Um, but the one woman came up to me and she goes, you know, I never felt comfortable. I haven't talked about this in two years since you died. And this is the first time I feel comfortable talking about it, you know, because I'm pretty brutally honest. Good and the bad.

SPEAKER_02 20:02

Yeah, that's so important. I mean, we we uh we love this, of course. This is what we I've been doing for almost three years is trying to get more conversations like this. And I said I started a nonprofit where we put um, amongst other things, we put a booth up at um farmers markets that was a booth that said, Tell us your story.

SPEAKER_04 20:21

Oh, cool.

SPEAKER_02 20:22

Oh, that's really cool. I love that. The farmers market people, when we first talked to them about it, said, Oh, nobody's gonna want to come talk to you, you know. Um, and it, you know, it's true, probably half the people would took one look and went, Oh no, thank you. But the other other bunch, quite a few people stopped by and it did exactly. Oh, that's amazing. I am so um so really glad that somebody's willing to listen to my story. And it's such an honor to be there and and be the be able to just be there and listen and offer maybe offer some resources for them if they need them. But yeah, that was that was a huge experience for me. I really appreciated that.

SPEAKER_01 20:58

Oh, that sounds so great. I would love that. I mean, I do love hearing other people's stories. I just think it's so amazing. Such a gift.

SPEAKER_03 21:06

Well, it's it's sacred, right? Like you're you're witnessing their journey and you're like, wow, you're you're so amazing. I'm so glad that you're here doing this.

SPEAKER_02 21:15

Yeah, yeah. The um the woman who was the official for the manager for the market at the end of the first day, she came over and she said, I'm so sorry I was cynical about this. This is the best thing we ever did. She was great. Um, yeah. So I'd love to hear. We we actually talked to you a little bit more about your sister project. I'd love to hear some more about that. That's what that was.

SPEAKER_01 21:37

Oh, with the sister tree.

SPEAKER_02 21:39

Yeah, yeah.

SPEAKER_01 21:39

Yeah. That's funny. Did you s right? So um when my sister died, I dedicated a tree to her um in a local park. And um though it took me a l a while to go and like look at the plaque because I it was pretty surprising when she died, and I was so completely devastated. As you all understand. But so I really had a hard time looking at it. So I was there one morning and I was kind of like daring myself to look like that. And a woman came up to me and she said, You know, I'm so glad you're here. I've been wanting to ask you about this tree. And it looks like she was a younger woman. And and um, I told her, you know, my sister had died. And she said, Well, my sister just died too. And I said, Oh my gosh, tell me about your sister. And she told me, and it was really an incredibly heartbreaking story, to be honest. And I just felt like I was like infused with the spirit of my sister because she was very generous and very humble. And I said, Well, we'll bring stuff for your sister too. We'll do that. And then, you know, from that, I started just I know like a shocking amount of women in my life who have lost their sisters who are their best friends. And so, and then I've met a you know, since since we start, so I started the tree, like I've met a bunch of women in that position. And so, you know, we go down there, I bring a stone that's decorated with the sister's name, and um we I ask the sister to tell me all about their sisters, tell me some stories, we sing some songs, say some prayers, whatever they want. And but one thing that's really funny is I'd say like 90% of the stories have to do with being on the phone with their sisters, and I just love that because it's such a sister thing to be like, you know, yapping on the phone, and I just love that. And it, and you know, there's some laughter, some tears, all the good stuff, you know. It's just really, really been amazing. So yeah, I feel so lucky to have that. It's just I think it's really helped me. I mean, I still have a long way to go, but I think it's helped me process, you know, losing my sister because at least it's something positive. You know, it's great. Yeah, no, it's been amazing.

SPEAKER_02 23:51

I um I just found the picture. I think if I'll see if I can share it here so people can see the picture of the um tree. Of the tr the butt the stones around the tree. Let's see if this will work.

SPEAKER_03 24:02

It's an altar tree. Yeah, it's so pretty.

SPEAKER_02 24:05

It's so beautiful. Let's see if I got yeah, here it is. So I I really um just love to have people see what this looks like because that's exactly what she Oh, thank you.

SPEAKER_01 24:17

Well, I have to I sent an updated picture today because we have a new very special stone there. So um, but yes, so that's it.

SPEAKER_02 24:29

I love it.

SPEAKER_01 24:29

It's so isn't it great?

SPEAKER_02 24:31

Yeah, thank you for sharing that with us.

SPEAKER_01 24:34

Sure, and I put my mom and my husband's mom are there too because I thought it'd be nice to have the grandmas watching over all these sisters. Yeah.

SPEAKER_03 24:41

And I I just want to just point out that you have done something very delightful in honor of your sister. It's a way to process your grief, it's a way to connect with nature, it's a way to bring others into the fold and say, I know we we are a sisterhood in this realm, right? Yeah, yeah. Uh, and I and I want to encourage people, you too can do things like this. Like it doesn't have to be a tree. It could be like my sister has a bench in Fort Collins, and right, and there are so many ways that any one of us can just do the simple things to honor our our best friends, you know, sisters, brothers. Yeah, so I like really appreciate this.

SPEAKER_01 25:21

I think it's nice to put I mean it's so devastating when we lose the people that we love, and there's so much darkness around that, you know, there just is. And but the fact of the matter is there was so much love between you and that person and so much joy and so much light. And I I sort of I guess part of me, what I I part of my problem with processing her death is I just couldn't imagine my sweet Lizzo, who was so joyful, always laughing, always talking, always all that stuff. And I just didn't want like me to think of her with all that darkness around. So you know, there's something about this tree and about sharing the experience with other women that just brings a lot of light, you know, a lot of hope and a lot of joy to, you know, to my memory of my sister, you know, who had brought that that light and hope and joy to me, you know, from the day she was born until she died. So I I just I do think, I mean, you have to process your grief in a way that feels right to you and to the person that you lost. And it's so important for you, obviously, to dictate how that's gonna go, of course. Of course, but I would like you just did, I would recommend finding some way to make it joyful.

SPEAKER_02 26:39

Yeah. Yeah. We just um I I think you know, we talk about ritual a lot and how important it is to for processing. And we just interviewed Day uh Day Shokret, who does um morning altars. Morning altars. And uh that was our last episode last Saturday. Um, and I love you know, it's just another great example. It's happened so much in this podcast, is we meet people who notice something that they wish they had had, you know, they wish they could have found. We had Pamela Bellier at one point who said, I could my son died and I couldn't find anything about mourning, and I mourning a son, and and she said, So I created these little um morning, uh, what do they call them? Uh grief grief uh book uh grief libraries, little grief libraries and post them all over the place and put them up all over the place and have a lot of grief books in them. And um, I don't know, I can give you example after example. It's just what we see over and over again. It just lifts our hearts. The people who like yourself see a need and see something and they just create these beautiful things. Like Dave just said he went out after was it? I think his father died or some brother or something, and he or maybe more than his dad.

SPEAKER_03 27:46

It was his dad, I think.

SPEAKER_02 27:47

Yeah, he just went out and he was sitting there thinking about it, and he just started putting together some of this like leaves and stuff, and he ended up creating this little beautiful mandala of things. And if you go on his website now, there's hundreds of pictures of the stuff he's done, all from just walking through the woods picking up stuff. And I just I just love that that tendency that we have as humans, um, that we celebrate as humans to be uh creative and create ways to um to solve these, or not solve, but you know, address these problems that we come across instead of just walking away. So we just really celebrate people like yourself.

SPEAKER_01 28:26

Well, and I think if you can I mean I do believe that an important part of processing grief is helping other people. I mean, it's been I think if you can do something that you feel helps somebody else, you know, that there's it feels like there's life in that, you know, and there's compassion and there's joy when you can help somebody else. And I think that's a really a pretty great way to lift yourself out of the depths of despair of grief, because there certainly are depths of despair for sure.

SPEAKER_04 28:58

Sure.

SPEAKER_01 28:58

But you know, what I mean, that's why I wrote my book, you know, that's why I did the sister trees. Like I'm trying, I'm all of this is actually helping me, you know, because I feel like I I had to lift myself out of that, you know. Yeah. And and also, I mean, like the man that you just mentioned, you do recognize gaps of resources, you know, when you're going through something that's difficult, you know, and and when you only you are the best, you are the best identifier of of a gap of resource when you're actually experiencing, you know, going through that. So when you see that, you know, how beautiful is it that you want to you don't want somebody else to experience that same gap of resource. I mean, that's a beautiful way to to handle something.

SPEAKER_02 29:45

Tell us the name of your book because we will put a link to it.

SPEAKER_01 29:48

But oh, that's so nice. Thank you. It's called The Silkworm, the magician, and the sister tree. And it's a great title. Yeah, I know there's a lot to it, but the good thing about it is people always are, you know, ask me to explain it. And then that is kind of an easier way to talk about the, I guess, in some ways to talk about the book, but you already heard about the sister tree. But the silkworm, um, Saint Teresa d'Avala is a Carmelite saint in the Catholic tradition, and um, she has a beautiful metaphor uh weaving a cocoon around yourself like a silkworm to block out the outside world and delve into your soul where God resides. It's a beautiful metaphor, and I love that for that reason. But I also thought it was a great metaphor for caregiving. And, you know, because you need to block out the outside world. I mean, with Alzheimer's, the outside world is pretty scary. And, you know, there are actual dangers, but also people can be very unkind, you know, and um so or not understanding. And and so it was I really focused, I tried to meditate on that metaphor quite a bit while I was caregiving. And the magician refers to the magic between two people in love, like a husband and wife, or two sisters, you know, that magical bond. And uh one of the tragedies of Alzheimer's is that from the beginning, from the first signs of the illness, that bond, that magical invisible string that Taylor sings about, um, starts to fray. You know, you just don't have that same magical connection because your partner, you know, doesn't have that ability anymore. And it's just it's just so tragic. So that's that's the explanation for the the title.

SPEAKER_02 31:36

It's great, it's really beautiful. Thank you. Very important stuff.

SPEAKER_03 31:41

Very important stuff, yes. Thank you. We didn't ask you what frightens you about the end uh about the end of life. Do you have a fear that you think about occasionally?

SPEAKER_01 31:52

I mean, I suppose as a mother, I think my my knee-jerk response is always going to be what would frighten me about the end of life is leaving my children, even though they're all adults. I just I just think that is a almost a biological normal thing to feel, you know, leaving leaving this earth. But no, I don't think, you know, I've I've been with my two favorite people as they transitioned in very different ways. And I have to say that when my husband was passing away, and um I really felt God in the room, you know, almost instead of and and after it was over, I really was overcome by the feeling like that God didn't steal my husband from me. I mean, of course not, but you know, these are just feelings, you know. But but I really felt like like he had come and gently taken my husband, you know, had come into our room, and the room felt very sacred, you know, like you would say. And uh, so I don't think I fear death in that way. I mean, I do know that I don't think I fear it anymore. I've seen it so much. Yes, and and I've seen the you know, I've seen the tragedy, and my sister's was she was so scared and it was really difficult. Uh but my husband's it was really kind of beautiful, so I don't think I do. I probably should more than I do, but I really don't know. No, no, no, no. Don't no should maybe that's a little scary.

SPEAKER_03 33:27

No, no, no, no, no. There's there's no reason to should shoot yourself. I do appreciate you shifting the language around how God didn't take away my husband, but you know, and as you said that I was like, um, God just took him home, and you're heading there soon, too, right? Like all of us are heading home.

SPEAKER_01 33:45

That's the feeling I had. Yeah, I very much I mean it was visceral, it really, really was.

SPEAKER_02 33:50

Yeah, it's so sweet. And as you say, it's such a sacred moment to be with people when they travel on like that. So I appreciate you sharing that with us. So we're getting toward the end here. Do you do you have anything that you wish we would have asked you about that you'd still like to share?

SPEAKER_01 34:08

Um let's see. You know, I think we had such a wonderful conversation about end of life, you know, and about caregiving and touched on faith. All that was so amazing. I guess, you know, I think another conversation I would like to have is, you know, because we've all lost, you know, people that are very close to us and people who we grew up with, you know, and who are foundational to who we are and what our identity is. Um, I think that that's an important conversation, which I know you guys talk about quite a bit, is you know, what it does when you lose somebody to your identity, like how you feel about yourself. You know, besides in addition to the loss of that person, you know, you feel like you're a different person often. I I mean that's how I felt, you know, when both my husband and my sister died. Like all of a sudden I wasn't a wife, and all of a sudden I wasn't, you know, the big sister taking care of my sister. And I think that that's a really difficult part of grieving is you know, the what happens to your sense of yourself, you know, in addition to missing that person. Um, you know, I just think that's a topic for another day, you know, because I think that we could really tap into that.

SPEAKER_02 35:28

It's very true, and and we've noticed that before too. And um, well, we both notice it when we've lost people ourselves, right? And or animals or anything, you know, it's just like suddenly the world is upside down. I remember when my mom died standing, I I was coming home when after she died, I just had to I'd been gone and I had to come back. And I'm standing in the airport and I couldn't figure out how everybody was still doing the same things they'd always been doing because the world was not the same anymore. It just didn't make sense. And uh yeah, you're right. It just it does change everything, it changes everything about who you are and what's going on, and yeah.

SPEAKER_01 36:03

I had a really difficult time not being a wife anymore, you know, and not being a caregiver anymore. You know, I did, you know, I think that was a big part of you know, one of the biggest difficulties in the first, you know, year, truthfully, and probably still is a difficulty, but I've managed to suppress it adequately, but you know, like we all do. Um, but yeah, I just I just think it's something I'm you know, just something just an interesting topic of conversation, you know, with anybody who's going through that because I think that we feel so guilty when we lose somebody, you know, we feel like, oh, maybe I should have done something. And yeah, there's that. Um, which is totally rational, you know, most of the time. And and you know, there's such loss, but we don't always acknowledge the loss, you know, of how we feel about ourselves, right?

SPEAKER_02 36:57

And as with any loss, it's another one of those things that could probably benefit from ritual around you know, just really recognizing it and spending time letting it go. Um, so yeah, everything as we we we always encourage ritual.

SPEAKER_01 37:11

Ritual's important.

SPEAKER_03 37:12

So he looks like I was also gonna I was gonna say that when I uh after my sister died, I you know, it was like I was in seminary, I was traveling, there was a lot of stuff, so there wasn't a lot of downtime to really just kind of immerse myself in sisterlessness, right? And so, you know, because I was busy, but I still I I was I was I was anguished. And I finally got back home. I was living in Guatemala at the time, so I finally made it back home. I was sitting in my living room and I had a new spiritual director I was working with. And out of nowhere, I just told her, I was like, my I have two toes that hurt really bad, which is unusual. And and she said, Have you told your body that your sister has died? And I was like, No, like that's a thing. And she's like, Well, your your your mind has already known this, like intellectually, you've spoken about it, you did the whole funeral, you planned all these things, your heart is broken, and it's been like, you know, feeling into this loss, but your body is just housing all these other parts and just kind of moving through the action. But unless you tell it, it doesn't know. And so we did this whole kind of meditation on letting my body know that we are now sisterless. Oh, it was heartbreaking. It was beautiful too. It was really interesting, and I and I actually share that with people now. I always ask them, like, make sure you for even if it's just like a different kind of loss, like you know, tell your body that this is no longer the thing. And just to like, you know, your cells are alive, your your bacteria is alive, like there's a whole other aspect of you that needs to be in the know.

SPEAKER_01 38:59

Um so well, I think sometimes we deny ourselves um the gift of acknowledging the loss. We're so worried about making sure we remember the person well, which is also important, obviously. But we uh we often don't take the time to acknowledge our loss, you know, to our identity, to our daily existence, you know, to and I think that we should all take care of ourselves a little bit better, you know.

SPEAKER_03 39:31

But but I but you know, I wonder part of the reason we don't is that others around us don't want us to. Because I because I would I remember going to seminary and just saying, like, my sister died a week and a half ago or whatever, and I truly did not get a lot of response from people. Like, I'm so sorry for your loss. But do you know what I mean? Like there was and and not that you totally know what you mean. But life, like Joaquil said, there's like life is moving on without whatever, like whatever you're going through, it's kind of it's kind of like your problem. It's not our collective stuff, right? And so I think that when you get that feedback, it's a loop. It's like, well, what why are you such a big baby about this? Like, gosh, you know, get move on.

SPEAKER_01 40:13

Well, I mean, often we do have to fill in the gaps for the lack of emotional support that we get from other people, and so you know, it's important you have to do that for yourself. I mean, which is unfortunate, especially, you know, when you're in you know, religious environments or in healthcare environments or whatever, all the places that we feel like we should be getting the emotional support, you know, many, many, many times you do not. So you have to, yeah. But that doesn't mean that all that emotional need doesn't go goes away, right? Right. You know, and and then it comes out and you know, hurt toes or you know, whatever, however, it comes out, you know, we all go through that. And um, but I'm glad that I think you and I have both taken the time to acknowledge, you know, our loss of our sisters, and you know, but because I think we probably both recognize that our loss deserves to be acknowledged, you know. And you know, we at some point we have to respect ourselves too, you know, respect the loss that we've gone through. I mean, I know that your sister and my sister would both want us to be doing that, you know. Yeah, and so even if nobody else appears to, like and they would want us to do it. So, oh I know it could be just so it's such a it is really can be devastating when people just aren't there in the way they should be.

SPEAKER_02 41:34

I think that's a really great message for our audience. Maybe the way to end this is that part of our work as a community is to be aware of these things and care for each other and not be the people who say, Well, that's your problem, or or shy away from the conversations or shy away from the support. So we can do that as communities. That's what we really want to grow here.

SPEAKER_03 41:54

That's right.

SPEAKER_02 41:54

This helps caring caring for each other. So so thank you so much. It's been such a pleasure talking to you again.

SPEAKER_00 42:02

So great.

SPEAKER_02 42:02

I love that.

SPEAKER_03 42:03

Yes, I know. I really love it. Are you are you coming to Denver on your book tour?

SPEAKER_01 42:08

I would like to, but I will ask that's so great. I actually would like to. I have relatives in in Colorado too. So very good.

SPEAKER_02 42:17

Um come to Seattle too.

SPEAKER_01 42:20

I've never been to Seattle. Isn't that good? And I'm such a music fan, and I would love to go, you know, I'd love to see you, and I would love to do the Kirk Cobain tour or whatever. I mean, I would love all of that.

SPEAKER_02 42:36

All this good stuff.

SPEAKER_01 42:36

Oh my gosh. See, now you're speaking my language. I would love all of that.

SPEAKER_02 42:40

You had um you had sent us a poem. Um I did, yeah. Or we could read it. I can probably find it again.

SPEAKER_01 42:49

Oh, if you have it right there, I'm not gonna do it justice. I can find it though.

SPEAKER_02 42:54

Okay, let's see if I can find it here. Let's see.

SPEAKER_01 42:57

I'd love to hear it in your beautiful voice.

SPEAKER_02 43:00

Oh. Very sweet. All right, let's see. It could be the bottom of this. Oh, it's beautiful. I just found a Vivian stone.

SPEAKER_01 43:09

Oh I know I wanted to bring that up, but I it's it's all good.

SPEAKER_03 43:15

You could bring it up.

SPEAKER_01 43:16

Okay, good, good.

SPEAKER_02 43:17

I I found you wanna do you want me to open that up and show it to people? Or oh, sure.

SPEAKER_04 43:24

Let's see.

SPEAKER_02 43:24

Is that on Ana Luisa? Do you feel okay about that?

SPEAKER_01 43:27

That sounds great. I didn't want to leave it.

SPEAKER_02 43:29

Um find it here again.

SPEAKER_01 43:31

Because I just placed this this stone for for Vivian uh yesterday.

SPEAKER_04 43:37

Ah, so sweet.

SPEAKER_01 43:38

I know, isn't it great? So you're gonna have to come to Chicago so we can you can we can do the prayers and the songs and the stories. I love it. Yeah, go check it out. I love it. Let's see if it's here. Yeah, there it is.

SPEAKER_03 43:49

And that's the thing, you know, when uh when people place oh my goodness So it has birds because you had mentioned that she loved birds. Oh yeah. I was gonna say, Oh my god, she loved birds. Yes.

SPEAKER_01 44:01

I wish I could say that I was the artist, but I am not.

SPEAKER_03 44:06

It's okay.

SPEAKER_01 44:07

Not one of my talents for sure.

SPEAKER_03 44:09

I love it.

SPEAKER_01 44:10

I'm gonna have to get a picture of it since my dad. My dad'll be loving that. And I sent a picture with um it it with the other stones.

SPEAKER_02 44:18

Yeah, it's on the email.

SPEAKER_01 44:19

So but I'll check it out.

SPEAKER_02 44:21

Um I found the poem. Let me uh get that opened here. Yeah. I I appreciate that too, that you sent that. So this is your own your poem you wrote, I believe.

SPEAKER_01 44:36

It is, after my sister died.

SPEAKER_02 44:37

Oh beautiful. Um it's just right up exactly what we've been talking about. So it's called the conversation. Words that announce that first kiss, words that describe that great dress. Words that analyze that infuriating comment. Words that retell that hilarious story. Words that explain how it feels to bring life into this world. Words that words that express how it feels to hear that devastating news. Words of encouragement when the world gets it wrong. Words of words of jubilation when the world gets it right. Words that make loneliness impossible and boredom something other people feel. Words that assure you that you are loved no matter what you did or didn't do. Never jealous. God gave you the perfect conversation partner, and when it ended, he gently reminded you that you stored up the words to tide you over until the conversation can begin again.

SPEAKER_03 46:03

Well, I love your sister. I love it. And I'm glad she was she was your best friend. That's so delightful.

SPEAKER_01 46:10

Yeah, yeah, yeah. Yeah, so lucky. Really just so lucky. Um as much as I miss her. I'm also just so grateful for the time I had her. But I do miss her for sure almost every morning. I feel like you know, I want to pick up the phone and call her and tell her. And also, she was the keeper of our like family archives. Like she knew everything about every cousin and every and I'm just terrible about that stuff. And it would be really helpful. But yeah, I mean, she was, you know, she was perfect.

SPEAKER_02 46:49

I love that. That's what I always say. She was perfect. Thanks so much. Thanks so much. Well, thank you for thank you for sharing her.

SPEAKER_01 46:54

Yep.

SPEAKER_02 46:54

Yeah, your husband appreciates you and appreciate your work. Oh, thank you so much.

SPEAKER_03 46:59

Thank you, thank you, thank you.

SPEAKER_01 47:01

Oh gosh.

SPEAKER_02 47:10

Thank you for joining us today. Thank you to Charles Heastan, the composer of the original music you are listening to now.

SPEAKER_03 47:17

And of course, thanks to you, our audience, and all of our amazing guests. Please come back next week for another great episode. Share this with your friends, family, and community. We hope you will subscribe and follow us on YouTube, Facebook, Instagram, Blue Sky, and Substack. Each guest's additional information will be found in the podcast notes. And of course, if you have a good end of life story to share, please reach out. We are always eager to hear from you.