SPEAKER_04 0:01

Welcome back, everybody. I am the Reverend Mother Ana Luisa Armandadis, and we're here for End of Life Conversations, our weekly dispatch. Is that what we're calling it? Weekly dispatch. Yeah. And I have been holding in my heart this wonderful now, it's a memory of when uh Joaquil came to visit me last week. And I'd like Joaquiel to talk a little bit about his wife and then what I perceived in that time because well, Joaquil, will you tell us about your journey right now and just just what's going on?

SPEAKER_00 0:40

Sure, sure. And and I mean, really, this leads to a lot of good thinking and thoughts that we can share around this. Yes. The subject of caregiving.

SPEAKER_02 0:47

Yes.

SPEAKER_00 0:48

So um over two years ago now, my wife was diagnosed with stage four pancreatic cancer, which is basically a you know, dying, dying, you know, terminal diagnosis. Um, her mom and her two brothers had died of the same thing and within six months of diagnosis. So we kind of just thought, okay, this is what's gonna happen.

SPEAKER_04 1:10

That's right.

SPEAKER_00 1:11

Yeah. And um, and the first couple of months, that's how it felt. I mean, she lost a ton of weight, she was, she couldn't walk very far. Um, she was just out of it. And and if you know Wendy, my wife, you would know that that's not a normal thing for her. She's a she's a you know, ever ready bunny, she's always moving. Um so um that first couple months, I thought, you know, I'm gonna lose my wife of 38 years, and this is not good. And and so, but the other thing that happened is it just like, okay, this is what I need to be here for. I need to be totally with her and present. So went to every single appointment with her. I took care of everything that had to be taken care of, meals, cleaning, all the things that you kind of don't even think about that when you have a partner that is are getting done because they're doing it, you know. Um, and suddenly my work around the house even just doubled, right? Not to mention that I was grieving, not to mention you know, anticipatory grief, not to mention I was having to contact people, had to arrange for medications, had to arrange for visits, um, and there were a lot of people visiting, which was really sweet. So that was intense. And um, but then phase two, if you will, um she started palliative care chemotherapy, and it worked. She basically um everything kind of settled down, she started gaining weight again, she started getting her energy back. Um, after a while, she did stopped having any pain um to speak of still, you know, some nausea and some weakness, but generally almost back to normal. And and in fact, there's several times I thought if I didn't know she was sick, I wouldn't know she was sick. And so that's right. There is, you know, that's sort of been well, that was the rule for a while, and then the chemo about a year in start failed or quit working, and they had to switch to a new chemo. But when it quit working, it was again, it was one of those kind of, oh my god, here we go again, you know. And I'm doing this with my three children. Um, you know, we're talking to each other and we're trying to uh and there's you know a little bit of catastrophizing that happens, you're like, oh my god, this is it, you know.

SPEAKER_04 3:20

Which is totally normal too, right?

SPEAKER_00 3:22

Like it's yeah, absolutely. So this then this recently, um, we started noticing a difference again, and that turned out to be another kind of complication um that we were dealing with, and that again kind of took us like what in I think in this particular version, this particular round, we were all like, Yeah, we're not going there this time, you know. We're not gonna we're not gonna assume anything except for what we know right now. And that's the other thing, you really are living in the moment every single moment, and being thankful for every single moment. And we're looking at the miracle that two years ago we heard that um our daughter was getting married, and they came, she and her boyfriend came out here, and fiance came out to the west coast and did a uh workshop wedding because they pretty much were sure Wendy wasn't gonna be able to be there for this wedding. But here we are, we're less than like a month away, and it looks very well like she's going to be there for the wedding, which is a freaking miracle, you know, all by itself. And really, everything we do that's a regular yearly event, we like we just kind of feel like wow, this is absolutely amazing. We're we're still still doing it, we're still here, still in the game, yeah. Yeah, so that's kind of the big and now we're in that phase of like don't know what's gonna happen tomorrow, but right now here we are. And so it was such a fun trip visiting with Ana Luisa, taking walks, and um, yeah, and just and Ana Luisa got to witness Wendy in her full glory, almost, you know.

SPEAKER_04 4:54

I did, and that's what I so for our listeners, I wanted to say too, we like we did city stuff and we did we camped. We uh did a little clamping trip and you know it was very comfortable for Wendy, and she still got to go hiking, and she was very like, where's the elevation? I need a hike, uh, which is really astounding because you we really it's been two years, right? And she's been here, she was here a year ago, and I was just kind of noticing um perhaps the impact of an elongated caregiving uh role that you've had. And I I watched you take care of her, I watched you listen, and you know, I think that when people have a cancer card or a like my sister, you know, physically disabled for her entire life, she had the disability card, like, you're gonna do what I say because I'm the one who can't walk, right? And so we we acquiesce to these kind of emotional relationships that we have with people because we are so terrified that they will be gone in the next, the next iteration, right? Like, and so I I wanted to talk about like caregiving, long-term caregiving. And I I found that Joaquil is so present, so like in the moment, like constantly checking in, you know, they're talking about what to do, like three, four weeks out because she's got chemo to go to. And not everybody has your patients, Joaquil. Like, you know, so how do you resource yourself? You know, what do what can we offer to people who have been in a long-term terminal diagnosis with a friend, a partner, a child, and who could still show up being uh present and loving because it's so hard. I know that at the end of my sister's life, it was like roll of the eyes for me because here she is, she's sick in the hospital again. They're telling me she's not gonna make it. That has happened so many times in my life with my sister. And I have to admit that when she passed away, I had a sigh of relief because I was like, finally, we are done with this. It's been like 20 years of over and over and over and over. And you know, I didn't get to like step away from this relationship, I was in it. So I, you know, and Sam too, you've been around people who have been caregivers, you've caregiven yourself. So let's really like hold like there is a a lot of different caregiver types out there, yeah. And let's talk about it.

SPEAKER_00 7:42

Yeah, and every situation is different. Yeah, Sam, t what what tell us some of your experiences?

SPEAKER_01 7:48

Um it's funny the what what first comes up feels maybe not the initial thought was transgressive, but not quite as transgressive, maybe as the complexity of feeling relief when it's done. Um I'd really like to hear more from uh you, Ana Luisa, later uh and and you two, Baquiel, at different points in this caregiving journey about the the con maybe inner conflict around that feeling. Sure. Um my related piece is is around recognizing those different capacities and where each person is skilled, resourced, and attuned to provide different kinds of services. I'm not a nurse. I've really learned that that the the nursing physical care side is not my realm. And sometimes there can be judgment, self-judgment about that. Like, you know, I, you know, if I'm around somebody in a caregiving capacity and they need uh intimate care. Yeah, yeah, I like that term. Yeah, they need that that level of like physically intimate care. Right. I'm not well tuned to do that, yeah. But also very, very grateful for the people who are, and there are a lot of people who like that's their jam. Yeah, and they love to show up in that way, and it doesn't phase them, you know. Like, I don't necessarily want to wipe somebody's butt.

SPEAKER_03 10:01

That's not that's not my thing.

SPEAKER_01 10:02

I'll wipe your spiritual butt all day long, all day long. I'll deal with that shit.

SPEAKER_04 10:08

You're so picky.

SPEAKER_01 10:11

Well, and that's that judgment piece is why do you have to be so picky?

SPEAKER_04 10:15

Yeah, yeah. And that's it's totally okay, right? Like we we have to show up in the areas where we can support without feel because it causes that ick factor to show up and that people will feel it, right? It's either gonna show up as like, oh my god, I'm so embarrassed that I need this kind of help, or you know, oh god, I can't believe I can't even do this for the one I love. Like, you know, I have been around like bed sores, you know, and cleaning those. And, you know, I have I have I am that person who can wipe just about anything. I have just been around it for so long. And I also recognize how like the dignity piece for the person who's asking for help and you know, the ick factor that comes from people around, right? Like, oh, I don't know if I could see this. Like, they don't my ex-husband was like, Don't even tell me, don't even tell me what you're doing. I don't want to like imagine it in my head. So I get it, you know, it's not for everyone. Um and you know, and I want to just say, like, if you're in that place right now and you have a loved one that you're having to do the intimate caregiving for and you're really tired, please, you know, let's find help for you because you don't need to be doing it 100% of the time. And if your partner or spouse or whatever says no, it's got to be you, because I also get that from my own daughter. I don't want anybody but you taking care of me, which is super heavy. I I get like I want to like pull my hair out sometimes because I'm like, why can't it just be somebody else? I'm tired of doing this. It's not even the ick factor, it's just I don't have anything left.

SPEAKER_00 11:49

It's tired, yeah. Yeah, yeah, exactly. We've heard I've heard several times. I mean, I think it's really, really normal of relief at the end of a caregiving thing, you know, when somebody dies after a while. I had a family come to me and for for cancer counseling companionship that would that had been caring for their mother for 20 years who had Alzheimer's. And for the last 10 years of that, she had no idea who was what or where she was. So that and they came to me and they were all saying it was a couple's boys and their dad, um, the father or the the husband and two sons, and they were like, Man, I I feel so guilty. I'm I'm we are so freaking relieved, you know. And I just told them, like I've told many other people, that is an absolutely normal thing to feel and nothing to be ashamed of. And as you're talking about, Sam, really knowing where where your uh strengths are and and accepting yourself for that and being willing to forgive yourself for not being everything all the time. Um, you know, I look forward to I didn't say look forward isn't maybe the right word, but I have an anticipatory grief around the um the the time that's coming when um Wendy will not be uh as easy as she is now and will not be able to do all the stuff she's doing now. And I'll be doing that intimate caregiving and um and probably by myself. I mean, it's very possible my boy, my son will come visit and help and etc. But um, but very likely mostly myself. And I'm on one hand, I'm like, yeah, I can do this. Uh on the other hand, I'm aware of and I've witnessed so much and have witnessed in my past too, that I know it's gonna be really, really hard and it's gonna be really tiring, and there's gonna be times when I just want to say, leave me alone, you know. And thankfully I have a community and my kids, and you know, I think I can count on those to help. And uh but wow, yeah, I I hear you. It's something to think about. And as we said, it's different every time, and people have different experiences. We do have um a resource list that we'll put in the podcast notes that include caregiver guidance and um some videos and stuff that and we'll also we've also had some podcasts about that, so we'll put all that in our podcast notes for you. But um, yeah, it's it's there's no denying the fact that this is maybe one of the hardest jobs that anybody ever takes on.

SPEAKER_04 14:14

That's right. It's hard, and you know, over the long course, like sometimes you have a terminal illness and it's fast. Like Joaquilla, you put your entire life on hold. Like you've literally got got, you know, said, I can't come to this, I can't do that, because you are so present to this journey with your spouse. Like it's just a hundred percent that, and not everybody can do that, right? There are people who will have jobs to go to, kids who still need to go to school. Um, and you know, I mean, at least you and Wendy go and sing together and do, you know, the uh dances of universal peace. I think that I would really recommend people to try to hold on to one little aspect of their own joy, even if it's not a shared joy with their spouse, because you need to still continue to to be in the world and and play, right?

SPEAKER_00 15:07

It makes a huge difference, yeah.

SPEAKER_04 15:08

Yes. So don't isolate yourself if you're doing the caregiving role.

SPEAKER_00 15:14

Yeah, reach out. That's really important. I've been blessed in that. Um, well, first of all, my first blessing is that I'm retired and I could just say it to all the boards and things I was doing and the activities I was doing, like I won't be there for a while because I my only job right now is taking care of my wife.

SPEAKER_02 15:30

Right.

SPEAKER_00 15:30

Um, and as she's gotten into a better space, I've been able to pick up some of those again. But that always, every single time I tell them I'll be here as long as I can or as well as I can, but I may very well at any moment say, I won't be here because I've got to take care of her, you know. So that's another kind of interesting part of it. And the other blessing is to have a community around me that is um intelligent and thoughtful and wise enough to regularly check in and see how I'm doing, you know, and um, so that's important. And if you're a part of a community and somebody's being a caregiver, that's the best thing you can do for them. Make sure they know that you're not just that's right, thinking about the person you're caring for, but they're thinking about you and how are you doing and checking in with them, seeing how you can help.

SPEAKER_04 16:16

Yeah, that's a big one. Like, yeah, don't forget that there is somebody who's who's doing the heavy lifting around the person who's needing help.

SPEAKER_03 16:26

Yeah, yeah.

SPEAKER_04 16:27

Yep. So, anyhow, I that's what I wanted to talk about today. Caregiving.

unknown 16:32

Yeah.

SPEAKER_04 16:33

And all of its iterations.

SPEAKER_00 16:35

I think one more piece of that is um, as with any dealing with people who are grieving or or going through end-of-life things, um, it's always better to just do things for them and not ask them what they need. Um, you know, that's kind of the go-to. It's like tell me anytime you need me, call me up, let me know what I can do for you. Um, a person who's grieving or person who's in the depths of caregiving, they don't have any time to think about who can I call for this. They need you to just show up. Come over, make some make a meal, clean the house, do the laundry, you know, anything that you can think of that um you would wish somebody would do for you, you know.

SPEAKER_01 17:14

Watch a dog.

SPEAKER_00 17:15

Yeah, yeah, exactly. Care for the kids.

SPEAKER_01 17:18

Yeah. And and on the the counter side of that, or not counter, but but on the other side of that, there's that piece of providing for the caregiver without asking them to hold more. And one of the pieces in caregiving directly that I've been exploring and is is a really interesting part is negotiating or conversing, planning with the recipient of the care about what they want to do on their own and what would be supportive to have help with.

SPEAKER_03 18:05

Yeah.

SPEAKER_01 18:05

And sometimes it's an ongoing conversation, like, you know, do you want me to go, you know, make the sandwich today, or do you want to go do that for yourself? Right. Yeah. Because it helps preserve that sense of like autonomy.

SPEAKER_04 18:18

Yes, an agency. Yeah.

SPEAKER_01 18:20

An agency. And and it build, you know, it's it's part of I think building a relationship also of intuiting maybe when when more support is needed or what. But thinking about, you know, mobility and especially in like aging, um, how important it is to stay active and stay doing certain things to as much as you can.

SPEAKER_00 18:45

Yeah.

SPEAKER_01 18:46

As much as you can, and then being ready to step in when whatever fatigue or limit is hit.

SPEAKER_03 18:53

Yeah.

SPEAKER_00 18:54

It's also the perfect time to remember to take care of all that planning that we always talk about. You know, if anything's not done, now's the time to do it. You know, if they especially if they can't go anywhere now, you've got them in a captive audience. You know.

SPEAKER_04 19:08

Although, you know, I have I have had people I've worked with who they are not, they're dying that they don't want to do it, they don't want to talk about it. Like there's never a right time in their book, right? It's just that's true.

SPEAKER_00 19:19

Yeah, that's always the case, right?

SPEAKER_04 19:20

I have seen that before, and I just it's shocking, but yeah, I'm still not ready to talk about this. I'm like, what? Okay.

SPEAKER_01 19:28

Well, I think we we talk so much here at End of Life Conversations podcast about about doing the thing, like doing the planning, finding ways to do it. And maybe I'm just like plugging a future episode right now about like what happens with those people, with the ones that who refuse and there's no preparation. And what are like the supports or like solutions when no prep work is done?

SPEAKER_04 20:07

Well, it's it's it's then it's called guesswork. And if there's one person who has to deal with it, they're just gonna decide. But if there's like a spouse left and a family left, and the family can't come to an agreement, then it's shit hits the fans, essentially. Yeah, and feelings are hurt, grief gets kind of, I think, pushed aside, or grief becomes this very murky place because the decisions that that person wants to have for their decedent is no, it's now mixed up with like, I wish, you know, I wish they'd had a burial instead of a cremation, and I didn't want Aunt Kelly to come here to like say her freaking evangelical stuff. Like all kinds of stuff has happened, right? So there's a lot of feelings now, rancor and grief. Yeah, so I think it just adds to it's trauma. It is essentially trauma that that that dead person has gifted their family, right?

SPEAKER_01 21:06

Absolutely. And what do we do with that? Have have you I maybe we're wandering off our little contained topic of caregiving, but like have the two of you been mediators, been support for people in those situations?

SPEAKER_04 21:28

I haven't.

SPEAKER_00 21:29

No, I've heard, I mean, we've heard afterward, you know, that that person who told us that 60% of or over 60% of siblings don't talk to each other after a parent dies. Um, that kind of statistic. And um, and it also brings up something, and and that story or a different another story brings up one more thing that relates to caregiving, which is you need to really make sure that the care, the the elder care that you're dealing with, if you're in an elder care home or um you have a nurse or you have a hospice or whatever you're doing, that they're on board with the wishes of your person as well. Uh, because we had a story of somebody who said and wrote down and had her family all agree that she would do V SED, uh voluntary stopping eating and drinking if she got to a certain point in her in her Alzheimer's. Um, she got to that point, and the people that the room, the home that she was in refused to honor that wish. Um, so you need to not only be thinking about what the agency of the person is, but who's around and who's gonna have who's gonna either argue with or help you with those conversations, you know. Right.

SPEAKER_04 22:35

Um choose accordingly, right? So that they had no idea that it was a Catholic or it was a religious uh uh home. So there and and that's this one thing I always think about in terms of the state law is there, and we have a lot of, I feel like in some states we have a lot of freedom to choose what we want. But it's when you get into the hospitals or assisted living care situations, they write their own rules, and those are the rules that you have to abide by. So you could know what those are. If you're gonna be a little, you know, a little different in what you're choosing, you have to make sure you're in a place where your your choices are going to be honored.

SPEAKER_00 23:15

Yeah. So have that conversation as well.

SPEAKER_04 23:18

Yeah.

SPEAKER_01 23:19

The corporate the corporatocracy, the gift that keeps on giving. Yeah.

SPEAKER_04 23:24

Or the the gift that keeps on taking. Taking right, exactly.

SPEAKER_00 23:28

That's exactly anyhow.

SPEAKER_04 23:31

Well, that's all I had on my little heart.

SPEAKER_00 23:33

Thank you, folks. That was great. I appreciate you both very much. I appreciate the audience. Yes. Thank you for listening, and please tune in, uh, like, subscribe, and tell all your friends. And we'll see you next time.

SPEAKER_04 23:47

All right, adios.

SPEAKER_00 23:48

Next time, adios.