End of Life Care in Community (CCW Ep 28)

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Episode transcript

The following episode transcript was autogenerated from the audio transcript and subsequently reviewed and lightly edited for accuracy and clarity. Filler words (ah, um, like, etc.) and false starts have been removed to improve readability.

Theo:
Welcome to Coffee with Catholic Workers, a podcast made by and for Catholic workers. I’m Theo.

Lydia:
And I’m Lydia. We’ve both been part of the Catholic Worker for the last decade, and we’re excited to bring to you conversations with different Catholic workers around the world.

Theo:
On this episode, we’re talking with Megan, Donald, Mary Ann, and Matt from the Los Angeles Catholic Worker. Although we already had one episode with the LA Worker, we reached back out to them to talk specifically about some of the work they’ve done surrounding hospice, both historically and in the recent past. This episode does center around the process of dying, so we do want to give a brief warning for any listeners who might not be in an emotional space for that.

Lydia:
Now, here’s our panel.

Theo:
Thank you all for joining us today on Coffee with Catholic Workers. Can we just go around the circle and get everyone’s name associated with the voice and tell us how long have you been part of the Catholic Worker movement and part of the LA Catholic Worker?

Mary Ann:
I’ll start. I’m Mary Ann O’Connor, and I became involved directly with the Catholic Worker after close to 40-year professional time as a nurse in many different hospital settings. Part of my practice had to do with hospice, just to note, since that’s our topic today.
I retired early and went out in the world to volunteer and went to many places outside of the country, inside the country, but landed in the Catholic Worker environment as a place that would keep me close to home, family and friends, but would also immerse me as much as I wanted to be immersed. I had the good fortune to begin my full-time time with Catholic Worker with Larry Purcell in Northern California, who leads a Catholic Worker of some 45 years at this point now. Then I ended up having my own house to be responsible for in San Jose, a house that had vacated for about six months, but had a 40-year reputation, great reputation for serving homeless women and children.

I did that for close to two years and returned to LA. To keep myself immersed in some way in the Catholic Worker, I made contact with the LA Worker and started with doing foot care down at the Hippie Kitchen with one of the Catholic Workers who is not with us anymore, you knew her, Theo Curran. I worked with her.

I’ve been doing foot care until just recently for the last 10 years. Then I was invited to help out at the house. I wanted to have a relationship with the community members in some way where I could be with them, help them, chat with them, understand their lives in community.

At about the same time I started foot care, I started doing Wednesday’s house duty for a part of this day. This is Wednesday with the Catholic Worker here in the house, who’s on the house. I get lots of opportunities then to get involved in many different ways and sometimes called on to resort to some of those insights I had from the past life, the nursing life.

Megan:
Megan Ramsey. My most recent or my current connection with the Catholic Worker is at the LA Catholic Worker where I’ve been for eight years now. I also got roped in early to foot care and any kind of care work. I’ve been here for eight years.

Matt:
Matt Harper. I first volunteered at the Catholic Worker when I was 15 years old, but wasn’t quite mature enough to appreciate what was happening there. I got reconnected when I went to school in Worcester with the St. Francis and Teresa House when I was 21 and then decided to try this Catholic Worker thing back in 2016 here in LA where I’m from. I’ve been doing that for the last seven and a half years.

Donald:
My name is Donald Nollar. I first got connected with the Catholic Worker back in 1988 when I was working with a social service organization on LA Skid Row and met up with Catholic Workers and started hanging around and volunteering and moved in with the community in 1993. After nine years of living in community, I moved out but still stayed very connected with the community, still do a lot of work with the community and part of the extended community.
That’s my connection with the house, the movement.

Lydia:
So we’ve talked some with some guests from the LA Worker in the past but had wanted to sort of do a reprise and look in particular at some of the, I don’t know, special projects or the certain aspect of work that you all have started doing and some of that has involved hospice work. How did the LA Worker get involved with that?

Donald:
Well, should I address that one? Okay. So the LA community had its first sort of experience with hospice work with a guest named Eugene Thanas who was a guest, I think this was back late 70s, early 80s, who had developed cancer and it was time for him to start hospice care.
And it just seemed natural for the community to care for him at home where he lived and he was a part of the community. And so the community did that and found that it was a very meaningful and powerful thing to bring that end of life care into the community, which in our modern world has been sort of farmed out to institutions in many cases. And so it wasn’t something the community sort of did a lot.

There were a couple of times between Eugene and the early 90s where folks were getting end of life care. But what really sort of got the community kind of focused into end of life and hospice care in the context of the community was during the AIDS crisis. And that was the time that I came involved with the community and moved into the house.

It was time for many of you who may not have been born or were very young at that time, there was no treatment for HIV. Many, many people were contracting it and becoming ill and dying. And initially there were not a lot of hospices.

There was a lack of medical services available for people with HIV. And because some of the populations on Skid Row that we serve in our kitchen and were populations that were really impacted by HIV, trans folks, gay folks, IV drug users, these are the populations that were really getting impacted. And so we started as soon as LA County Hospital started an HIV clinic, we started volunteering there, bringing food for the evening clinic, hanging out with guests.
We started getting HIV testing and services at our little hospitality clinic that we had at the kitchen at the time. And as people that we knew and had relationships with reached the point where they needed care, where they were at end of life, it was just natural for us to bring them home and care for them at home. So as much as we were able to, of course, we couldn’t take care of everyone, but as we had room and ability and relationships with people, we brought them home.

So during those years, we did a lot of hospice work. It was very intense. And so from then after AIDS medications came out and it became a manageable disease, that kind of backed off, but we had that experience of within the community of caring for those at end of life.
And so that just became part of what we did. And when community members or guests became ill, it just is natural as one would in any family to be able to care for them at home. And that was kind of a part of our work.

Theo:
And so in the past year, you all have, or maybe a little more than a year, had a couple of long-term guests at the house who entered that stage of their life journey and needed that care. Can you all tell us a little bit about Rudy and Alberto and their lives and situations? And there are so many pieces that I’m sure to address, but like, what did that look like?
You’re running a soup kitchen. You have these people that need intense care. This is all of it.

Megan:
Yeah, I guess. So yeah, Rudy and Alberto had both been living here for what, 15 years or so, give or take, more than that, I think each of them. But they were both, they both entered hospice officially in January of last year, like within weeks of each other, their doctors told them that they were both entered hospice.

So yeah, Rudy was, I don’t know, maybe Donald wants to speak more to Rudy, but Rudy, they’re both very artistic souls. Rudy brought music and chess into our household. And yeah, I don’t know, like, but I can talk about them going to hospice.
So it was very different for each of them. Rudy, when he went, he started, you know, he was probably in a wheelchair by the time he went to hospice care, but, you know, he quickly lost mobility. And so then that just took kind of around the clock care from our community of like, okay, you have to be with him at all times, because he’s in a chair now.

If he needs to get from A to B, you know, we need to be there to help him. We need to be there to give him, you know, get him water and food and things like that. So with Rudy, it became very hands-on and we needed to make sure one of us was signed up to be, you know, his caretaker at all times, or we had to bring in friends of our communities to be with him at all times.
So that was very different. And then Alberto was an artist in his own way as well. He was an artist.

He was a visual artist and a poet. And he, though, was very independent. He very much, you know, took care of himself, gosh, almost up until maybe the week he passed away.
But, you know, he was still preparing his own meals in the exact way that he wanted and, you know, taking care of his medical condition in the way that he wanted. And so, yeah. Yeah.

Matt:
I think one of the stories I heard about Alberto was, so he came undocumented to the United States, and at one point got housing through a local Catholic church, Blessed Sacrament had a shelter there. And they made a decision at some point to transition from the shelter for undocumented folks that they were doing to sheltering folks who were unhoused in the United States from the streets. And in that transition, Alberto was going to be moved out.
And a former community member, Christa Ochagrosso, artist, knew him, had a relationship with him, reached out to our community and said, like, do you have space for this person who I know? Which I think one of the ways we’ve gotten a lot of our guests is through relationships. Donald mentioned relationships being an important piece of all of this work.
And about a year later, we did have space and capacity for a new guest, and Alberto came and kind of, as was mentioned, Alberto had a tumor since I think it was the late 90s in his, developed a tumor in his brain. And so what’s that? It was in his cranium.

Donald:
It was in the brain. It was like, outside the brain.

Matt:
Appreciate that. Yeah. And so was to, as Megan had said, kind of like having to deal with this thing that could dramatically change his life, would dramatically, could end his life.
And so for so many years, he learned that he would be the only advocate, the best advocate for himself. He would be the person who pushed for the things he needed best. And so he continued to care for himself.

And so it was, it was interesting to watch his hospice experience. It also, Rudy had just passed away a few months before Alberto really began to go downhill. And so we had these two experiences at the same time, but also kind of back to back.
And to have the first one where Rudy was in need of so much extra care and support, and then to have Alberto, who was so independent, it really just kind of showed a piece of the huge spectrum that comes with hospice care. And in many ways, as one of our caretakers, Sue mentioned, it also not only was a chance for us to learn how to do it for these guests of ours, but this hospice care also has opened so many doors for us to learn how to do it for other people in our own family lives. And in a world that unfortunately isn’t able to care for the needs of their, our family members as much, it’s been such a gift to learn from these two folks and how to care for folks and how to learn how to be patient and how to meet people’s needs quietly.
But yeah, anyway, so just a little piece of that Alberto story. And then the Rudy story, unless someone knows it better, was, Don, you might know the story better. So feel free to jump in on how he came to us.

But my understanding was he was a guest at our kitchen for a long, long time and a beloved guest at that. And he would be invited to come home and wasn’t really interested in it. And then I believe one day he showed up at our coffee line, one early morning oatmeal and coffee.
And I think he’d been in a tough place and a bad place. And I believe it was Catherine who said to him, hey, Mr. Rudy, would you like to come home? And I think the story goes, he said, yes.
And then that was kind of it. But Donald, I don’t know if you have any more of that story.

Donald:
Yeah, that was kind of it. And for many years, Rudy would kind of come and go. He’d come stay at the house for a few months and then he’d disappear for a few months and then he’d come back.

Matt:
Yeah, I think even I was looking at the notes that we’ve been taking, we take notes every week on our folks just to make sure we remember kind of the details of the stories and what we’re doing. And I think just a few months before he entered hospice, he disappeared one night to go to the racetracks. And we actually even had to put a tracker on his shoe because he had dementia.

Donald:
So he really liked to play horses. So when he would get his check, he would disappear and come back at some point. But at this point, he developed dementia.
So when he would go away, he’d get lost. So one of our community members put a little tracker in his shoe. With consent.
Yes, with consent. But as I believe that last time he went off, he didn’t wear those pair of shoes. And fortunately, an angel who is a foster care youth who was also on the buses at four in the morning ran into him and helped him figure out how to get home and brought him home to us.

Mary Ann:
One of the things I wanted to kind of talk about briefly is the very front end of entering hospice. And both of these individuals did that a little bit differently. But the essential important thing is what I’ll just simply call informed consent on the part of the individual.

That it isn’t the Catholic worker that makes the decision, oh, you’re this sick. This is what the doctors are telling us. So we think, you know, this is what you need.

And so Rudy was the first to get assigned, as we’ve mentioned, to hospice. And one of the things, particularly when the guests in the house are not well, usually there’s a community member that is sort of more of an advocate for that individual than the whole community, participates, of course, in caring for everybody. But usually there’s someone who’s on that person, takes the person to doctor’s appointments or to other things, or to the horse races.
But so when Rudy died of stage four lung cancer, and he didn’t know he had that, you know, initially, until this moment when he was confronted with a choice in the doctor’s office. And so I was in that appointment with the community member who was his advocate, Jed, in the community here. And a team of doctors, there were three doctors in the office at this point, Rudy, and he had had some scans that reflected his lung cancer and its metastases.

So he was in this meeting to understand that he was really sick. And the first thing that all physicians will do in a meeting like this is to explain how it can be treated. And Rudy is sort of a, he’s a thinker, he was a thinker, but he was a quiet guy.

And so as the doctors explained in pretty straightforward, clear, frank terms, what his problem was, and labeled it cancer, you know, very clear. They move then into what they do next, because doctors don’t talk about hospice, that usually gets initiated by the family or the person themself, or not at all. Because there’s all kinds of feelings or understandings about what hospice means.

It’s more accepted nowadays than it was even 5-10 years ago. But anyway, so the doctors with Rudy told him what he had, and then began to talk about what they would do to treat it. And there was a long pause when they finished.

And I’m thinking, what is Rudy, what is Rudy thinking? And so there was, because there was a silence, I said, Can you please restate what you’ve just told him and what his treatment will mean? Not just how he’ll be treated, but what it will mean, how he will feel, what the treatment will create for him so he can understand it.
So then they did that. And what I wanted to just underscore here is that the Catholic worker who’s, or any one of the Catholic workers who are with somebody entering into this phase of their life, and however it’s going to be, you’re constantly in an advocacy role. It isn’t hospice.
It isn’t the medical team that are the advocates. They’re all experts in what they bring to the table. But when you’re with a guest or somebody from downtown, you’re thinking about what does this person need?

So then as the doctors repeated the chemotherapy, the radiation that they would do for him, and what amount of life that would give him, I asked them to talk about the effects of the chemotherapy. I’m trying to lead them to giving him a clear picture of what it’s going to mean at 80 years of age, when he’s already weak, and as you pointed out, Megan, in a wheelchair, I think at that point in time. And so they talked about him being sick.
And all Rudy did was say, Well, I don’t want to be sick. I don’t want to be sick. He didn’t say I don’t want treatment, but that’s all he had to say.
So then I said, So can you explain to him if he doesn’t want to be sick, what might be done to keep him not sick, pain free, etc. So then they shifted into conversation about hospice. And focusing more than are actually completely at that point on I’m palliative, you know, pain relief care versus curative care, which would have only given him, if it would have much more than he had anyway, it wouldn’t have.

So, so for Rudy, that went very smooth. And Rudy, he’s he understood it because they were simple. So he so moving him into hospice in terms of him being informed, and him giving consent, it happened in that moment.

And with, you know, maybe Donald, do you want to talk more about Alberto or what? Because for Alberto, it was much more difficult because Alberto, what Alberto loved life, I think, and he didn’t see necessarily that sort of the cut and dried simplicity that is more or less was with Rudy.

Donald:
Yeah, and I think with Alberto, his situation was very different. He was much younger than Rudy, he was only in his 60s. And he’d also been living with this tumor for 15 years, he’d been living with a long time as a slow growing tumor in his cranium.

It had already, you know, grown into his eye, he’d lost one eye. He’d had surgery, he’d had chemo, he’d gone through all of that. The tumor had kind of stopped growing for a long time.
And then it started growing again. And so he was always in this position of, you know, okay, well, you know, I’ve been living with this, I’ve been I’ve been having a life I’ve been he was an artist as well. He was a painter, he was a poet.

He was an assemblage worker. And so he had a lot of life to live and a lot of life he wanted to live. So yeah, he was very much, you know, on that, well, what can I do?
What treatment can I do? Until finally, at a certain point, it was obvious there wasn’t anything left to do. And that point, he made that decision to go into hospice, but it was a very different procedure than it was with with Rudy.

And it was really at the point when the doctors were like, there is nothing more we can do at this point, we cannot, you know, you can’t have any more chemo, you know, tumors not going to respond to radiation. If we were to operate within operable, and if we did, you probably wouldn’t survive because it would hemorrhage. And so it was kind of like his his medical options had completely run out by the time he decided to go into hospice.

Mary Ann:
And the care for Alberto also became at about that time became far more complex than the care for Rudy ever was.

Donald:
Yeah.

Mary Ann:
If that if the community here could have managed Rudy’s discomfort, his constipation, the stuff that happens to the body when you’re on a lot of pain medicine, the community could have taken Rudy to the end by themselves in a way, you don’t want to do that necessarily, but that could have happened. With Alberto, he lived for quite a while on hospice, with a very difficult set of treatments that had everything to do from pain and discomfort relief and to to dressing his face, and to which was, which was a difficult thing for the community to figure out who’s on first around that 24 seven. So introducing hospice for Alberto was bringing registered nurses into the picture, who supported the community and did those dressing changes, which were the most kind of visual way everybody was involved.

While the community members supplemented the what the nurses were doing or saying, well, this is what we need now. And and so that it was very, I think Alberto would have been extremely difficult to manage without hospice. But it was a great team effort, I think, by and large between.

Donald:
Yeah, and I think that’s a really good point you’re bringing up. Marianne is about like everybody’s needs at end of life are so completely different. And hospice goes different in so many different directions and having the ability to not only have the community people on board, and then people’s personalities like Albert Rudy was kind of like, yeah, anybody who can take care of me is okay.

Alberto was very picky about who he wanted to take care of him. And so, you know, having the folks in community that he trusted to be able to do that, being able to bring in folks from the extended community who he trusted, having in home supportive services to help with that and having the hospice nurses to help with that. And the other thing that kind of was also special with Alberto and kind of brings me back to previous hospice experiences that I always found were always kind of amazing was most of the a lot of the guests that come to the Catholic Worker are estranged from their families.

Or if they’re not completely estranged, there’s just there’s not a lot of intense involvement, right. And what was always interesting to me was in cases where guests had been distanced from their families for whatever reason, and at end of night, their families would start to appear and hang around and be there. And there was sometimes reconciliations or sometimes there wasn’t anything to reconcile.

It was just bringing back together and seeing those family dynamics kind of come together and heal. And then the stories and learning about the guests from the family, because, you know, I mean, I guess had a whole life before they came to us that sometimes we never, they choose not to share with us, but then we learn through the family. And Alberto’s was definitely one of those situations where we really, some of one of the key players in his end of life was his sister who came up from Mexico, and who was able to get a humanitarian visa to come and she parked herself, literally parked herself.

And at first Alberto was very resistant to her. He wanted, he liked her, he wanted her to be there, but he didn’t want her to touch him. He didn’t want her to do anything.
And he was very like, you go over there, I’m here. Okay, now you can come and talk with me. Now go back over there.

Initially, it was very like, and then as, and she was so patient. Oh my God, the woman was so patient. She would literally just sit there and read and wait and wait and wait.

Finally, he softened and he opened and they began to reminisce about their childhood. And they just, this whole thing blossomed between them. And she was probably the key person, caregiver, you know, with him just in her being there.

And not only in what she was able to provide in terms of, you know, physical, but the emotional support she had for him there was just amazing.

Mary Ann:
And the fact that the Catholic worker could provide her with community, she became a member of the community and kind of grew towards many of the things that the community does on a daily basis. Initially, she just paid attention to Alberto, but eventually you’d see her sweeping or doing something. But she came, she had a room here.
So she was protected in every way. She had food. She had no, there was no obligation at all, but to be with him and to have them, as Donald said so well, be in relationship the way they were.

Donald:
And eventually the whole extended family was hanging around and coming around. And, you know, Alberto’s memorial was at the house with his whole family. And at the very end, when he was actively dying, his nieces and nephews and sisters and brothers were all there in his room, keeping vigil with him.

So yeah, it was, it was pretty, and I’ve seen that with previous guests where we become this place where a family that maybe wasn’t as united was able to come together in a space. So in that sense, the Catholic worker house becomes a container or a space where this family can do what they need to do to be together at this stage in their family life. And that’s really beautiful to just kind of, okay, we get to provide the space for this to all happen, you know.

Lydia:
There’s this piece where culturally we don’t really like death a whole lot. I think maybe some of it’s with the idea that we falsely think that we’ve sort of solved all of our diseases and that we believe there’s treatments for everything. But there’s also far more people who don’t die at home, who do die in treatment centers.
And so I’m wondering what it’s been like for the house to sort of walk through some of this, where historically the worker has done this in the past. But what’s it been like more recently for people to now sort of have to confront death up close on a daily basis?

Matt:
I remember when I joined in September of 2016, just a month or two later, I think it was, I was on house one day and walked into one of my housemate’s rooms and he was on the ground and had died. And it was the first time I had ever encountered death in the flesh in person. And while it wasn’t the hospice process, there was this like magical thing that just began to unfurl in front of me that was like the beginning of this breaking down of the fears of death, the breaking down of this like expectations to control everything and just watch this really natural, really human, really personal process unfold of saying prayers, but doing them in a unique and personal way, telling the stories of people’s lives, contacting those who knew them, such that when this hospice process happened years later, it had been this like slow learning process for me.

And then one of my favorite stories is for both of them, they died and we were able to keep them here for a long amount of time through some, you know, fudging of details and some graciousness on the parts of the hospice care facilities so that we could do our part in this process. And yeah, I just really like, I’m so grateful that, I mean, on some levels it’s such a privilege to be able to do hospice and not just because we have so much to learn, but because I don’t live the life that’s like trying to make ends meet and trying to also care for a sick loved ones. Like this lifestyle allows us to do this really sacred work.

And I’m so, so appreciative of that. But in a way it’s, yeah, I think as Donald was saying, it’s just such a natural outgrowth of these things that we are a part of. And to confront our own learnings and fears around death, to walk with people as they graciously humor us in our trying to meet their needs and care for them, however poorly we do it, though always with great love.
And it almost feels like it’s this responsibility that gets passed along. And then it’s like, all right, who are you going to go share this with now? Who can you bring this to?
Such that when my dad was dying, I was like, it’s my job to bring this to my family. It’s like my job for us to talk about this. Like, no, like let’s keep dad at the house.

Like let’s make sure he’s comfortable and let’s decide how we want to do this. And I just appreciate that. I mean, that’s how rituals have always been carried on at their best is the personal sharings and tellings of stories and practices.
And it feels so cool to be in a community that does that in a world that makes it so hard to do that and doesn’t really make us think it’s valuable.

Megan:
My first experience with death was actually just before I joined this community. I put aside time to join the Catholic worker community. And so I quit work for a while and I’d taken a month off of work to just be in the community.

But instead my grandmother started dying back in St. Louis. So I traveled back to St. Louis and I was able to be one of her primary hospice caregivers for a month of her life as she transitioned. And with that time, there was this, a church friend of hers would come in every single day and she would just come in kind of singing and she would say, this is holy ground.

You’re in standing and holy ground. And over that month, like I really began to understand that like really somebody does have like one foot here on earth and then like one foot in the next and whatever is next. And it really is a sacred space that yeah, I’d never really gotten to be a part of before.

And so I love it when we can do it here in the house for people because really hospice is a really sacred time where you do get to like really witness all these kind of mystical things that happen, you know, when people are kind of seeing things that you’re not seeing or they’re saying things that don’t totally make sense. Like I think some of it is us just kind of putting our own beliefs on that or just like interpreting it the way that we like read tea leaves, right? You start interpreting it, but it’s really is like beautiful hallowed space.

And the most obvious part of that is like that it’s a time where you can just like endlessly give somebody like love and care, which we don’t always do in our day-to-day practice, right? We have some little, you know, standoff, okay, I’ll let you care for yourself. But now it’s like, nope, I get to endlessly show you how much I love you and you’re relying on me for some of your basic needs. And yeah, it just, it’s a very beautiful space that you otherwise don’t get to be a part of.

Mary Ann:
That makes me, I’m not quite sure how I want to frame this, but it makes me think about what Matt and Megan have to say about being in a community like this. There’s a lot going on all the time and you are constantly in a to-do mode, everybody is. And what you just said just reminded me of that.

So when you have a guest or anyone on hospice, that’s a different, almost opposite mode. And I think one of the things I witnessed coming every Wednesday during the time that both of these gentlemen were on hospice is realizing how much each member of the live-in community, not myself, but the live-in community had to shift throughout the day from being still to at the very least to listen to or to observe what’s going on with the individual at a moment in time and get on with lunch that’s due for everybody in the house at 1230 or off to vigil. So I think it might be helpful to talk a little bit about how did you, what was your experience or how did you make space to be able to shift constantly, but with both Rudy and Alberto.

Matt:
Yeah, it’s, we slept on the couch, someone slept on the couch every night outside of Rudy’s room because he would get up in the middle of the night, discombobulated, agitated, need to use the bathroom, need to go smoke a cigarette, talk to himself, see things. And I think about how few of us there are and were here and how very stretched folks already feel. And on some ways, I think to use Megan’s word of mystical, like there was something that happened that made us, maybe that gifted us the energy and capacity to do what we did over those months.
But also I think, you know, the checklist things to do isn’t why any of us got into this work. And so in a way, hospice was the invitation for us to return to why we’re here and what this is about. As a small community running a lot of big projects, some days, some weeks, some months, some years, it feels like you’re just keeping things running.

And that is not what this work for me feels like it’s about. And so when those opportunities come to just be present with someone and not have to accomplish things, I found it, I was so appreciative of that. I was like, my job gets to be to be with these really wonderful human beings.

There is something about our guests that are often, I’m like, they are the best of us. And I get to just spend time with these folks. And so, yeah, we still kept all these things going, hopefully had some grace for each other when we needed to cut things out or shift the schedule around.
And in a way, it was kind of like an unspoken commitment that we were like, we’re going to be here and we’re going to show up. And it doesn’t mean that we did it well all the time. We had to have a lot of debriefs and check-ins and, you know, accountability stuff.

But, you know, looking back now, it does just really feel like it gifted us as a community a chance to remember why we’re doing this and to love these two men into their next place. In this, what I think is at the heart of the Catholic work or this belief of like, this is the thing that is going to keep us all safe, this sort of community work. And so our commitment, our care in this time is part of the cycle that will care for us one day and meet our needs one day.
And I think I really got a sense of my personal stake in why I’m building the world that I am and watching these folks be cared for, where I was like, no one needs to die alone in a cold facility where people are warehoused. And I surely don’t want to. Yeah, I don’t know.

Donald:
And I think sort of touching on what you all have touched on is that this kind of work really needs community. It absolutely needs community. I can’t imagine doing hospice work alone or even with just my nuclear family, you know.

It’s, as Mary Anne and Megan have mentioned, you know, the community is kind of small right now and is running a lot of things. And there’s no way the community could have, you know, the live-in community could have done this alone. But there was this extended community of people and family and professional hospice folks that were able to sort of rally around.
And because it’s not easy work. It’s not. And I think getting us back to what you were saying, Lydia, how does this affect me?

You know, for me, and I’ve been involved with quite a bit of hospice work over my life. And I guess I can say is I’ve lost my fear of death. You know, I’m not afraid of actually dying or ending of life.

I’ve never been able to let go of the worry of suffering of like, and I always hold that like when somebody’s like reaching end of life, my sister’s in hospice right now and sort of like what, you know, is there going to be, because fortunately with my sister’s situation, she doesn’t have any physical pain. She has a certain kind of brain tumor that it’s just like, she’s going to go to sleep and there’s no physical, but it’s like this, my anxiety isn’t over death. It’s all the things that happen, before like with Alberto, such a painful, I mean, Alberto is one of the hardest hospices I’ve ever had in my life.

Not because he was a difficult person. He’s one of the easiest people, but the amount of physical pain that man endured was just almost unimaginable. And so that is something that I’m always like still anxious about is, and have not ever sort of been able to find peace around other than just accepting, okay, this is what it is.
And I’m going to be uncomfortable with it. And I guess that’s normal. It’s human.

Why would you be comfortable around suffering? Right. I guess it’s normal to be anxious around that.

So yeah. The other thing I think that I learned over these years of, and again, with Rudy and Alberto, there has been, as Matt was suggesting, it’s hard. There’s nights where you don’t sleep.
You’re trying to keep other things going and you’re also dealing with the emotional, the emotions that come up in yourself with your guests, with a lot of emotional stuff comes up and having the space to be able to process that and debrief it and deal with it inside is so important. And I know that one of the things back in the nineties and during the AIDS crisis, when we were doing this, we didn’t have time. It was just like one person after another person, after another person or another person.

And there was no time to process any of it and no time to process the grief and, or just even the emotions that were coming up within you. And at a certain point, I remember I just, I was numb inside, just completely numb. And somebody had come in that we had agreed to do hospice with it.

I agreed to be their primary person. And I was just like, I can’t do it. I just can’t.

There’s, I’m not in any way capable of being present to this person because I hadn’t had the chance to do any of the processing. And so I’d say that’s another really important part of doing this work is like having that time and that space, because it is sacred, it’s beautiful, but it also stirs up a lot of stuff inside of you. You know, and I’m sure Marianne knows about that because you worked in this for years too.

Matt:
Great point. Great point. And there’s something, just one last little thought I’ll be quick is, I think of so much of the work we do, it’s great that we are meeting the needs of folks on Skid Row.
But I think one of the most important things we do is we give folks who would never necessarily choose to do that on their own, a chance to come and be transformed and have an encounter that might impact them. And like the people we invited into this hospice experience who were willing to raise their hand and join our team from the extended community and beyond, continue to talk about just what an experience that was for them. And I just think of like, yeah, we’re always hopefully using these things as a way to help others, including ourselves, grow because people open themselves and their experiences up to us.
And it’s just kind of just like paying forward that I’m not good at asking for help or inviting people into things a lot, but I think this hospice process just reminded me of how like, this isn’t mine to hold. And so how do we continue to share this with others for our sake as well as for theirs?

Lydia:
It’s that power of personalism transforming not just other people’s lives, but really it’s something that we all need for ourselves as well. Anything else that we should touch on? I thank you all for sharing some of the stories about this process and what it’s been like for sharing your guest stories, for sharing the community’s stories and some of your personal stories.
Anything else that we haven’t touched on that would be good to think about?

Mary Ann:
One of the things that I think about looking back on almost every hospice situation I’ve known, but then I’m just looking at these two gentlemen, is that it’s important for the family or the community in this case, in part with Alberto, but certainly with Rudy, this community was family and the family is the advocate. The healthcare team, the nurses, the doctor who you generally don’t see, but the doctor is constantly involved on the phone with the nurses, the family needs to know that they’re the ones driving this, that they’re the ones in control. There are many examples, I’m not going to think, I don’t want to get into the detail of that too much even now around these two gentlemen, but I think of the very end of their lives and particularly Alberto, where that control as advocacy was exercised by the community.

I understand that in the past, Donald, you would have this experience that this wasn’t the first time that the day the person died was not the day on record, so I’m going to kind of go to the very end, is that the community that took care of both of these gentlemen knew when it was time to call hospice, because when you’re on hospice, the responsibility for contacting the mortuary is hospices. They need to identify or document the time of death, all of that sort of thing. It’s they’re kind of responsible for that, but once you’ve done that then, you’ve lost some of the control on how soon you want that body to leave.

There might be somebody coming, the whole community here might need time to grieve. It might be the middle of the night and you want to wait until mid-morning when everybody’s up and moving around and everybody has their chance to come in. You might want to have a spiritual ritual.

We had a beautiful one for Alberto before his body was released, but he didn’t leave the house for about 24 hours and we got a lot of grief for that. It was a struggle and conversation amongst all of us were here, when do we call hospice and let them know? They’re going to be really not happy that we didn’t call them last night when he died.

We dealt with that in a way that was ultimately what we felt was Alberto’s, even though he wasn’t here anymore, Alberto’s and the family’s best interest and the community’s best interest who had lived with Alberto for 15 years. It was fabulous the way it turned out. We were chastised, more than one of us, I know I was, when I made that first call to hospice to tell them.

All along the way and even to the end, it’s important to realize that it’s the community, it’s the patient, not the patient, but the person on hospice and the family, however you, whatever you mean by family supporting that are advocating for that patient. The team of health care providers are there to respond to what they’re hearing. It’s really important to give them the information so that all the retaliation that’s needed happens, but also to work that relationship for the health care team to be there when needed and maybe not so much, whatever, just to make those adjustments.

Matt:
One other thing that feels like worth naming is I don’t know what it’s like to live in any other state and I don’t know what health care systems looked like in California before my time here, but I was just so grateful for however deficient our health care system is, California had offered so many things that were so helpful. This in-home supportive services where you can get a paid person, even someone who lives in the house, a family member who cares for someone who’s sick to get compensated for their time so that they can care for people, like what that affords. The quality of the nurses and doctors and just generally so impressed with them.

They’re helping get Alberto’s family humanitarian visa so they could see him even though it had been decades for some of them. I think about that part of the reason we held off on calling for Alberto was so his brother could get here from Oaxaca and he was on a bus overnight and on a plane and was able to come be with his brother’s body. They just did so many things that made our work easier, made us able to care for our beloved friends and I’m just so grateful that it was a little bit easier because of the medical system commitment to care that is here and made me think what else would be possible if we committed to this in a more profound way for folks so it’s not just at the end of their life when they get a lot of these pieces of care met. I’m no expert on the healthcare system but it just seemed like I thought I was going to be more upset than I was.

Megan:
I guess I think something important to say, Matt started to talk about it earlier, but like ritual around, I mean especially like once somebody’s passed, as clunky as we did that, just to be like, okay, let’s mark this end of this person’s life here with us. And Karan, who you mentioned earlier, I remember her specifically leaving us directions before she passed and one thing that she said was like, I want you to wash my body, I want you to brush my hair, I want you to cut my nails and like she left us this list and I was at the time, I was kind of like, I don’t know how I feel about this, but I got to be there like just after she passed away and so I got to wash her body and do all these things and I was just so appreciative at that time that like she had given us, she gave us a gift by giving us that list because like in that time you’re with somebody’s body, you’re just like, what the hell do I do now? I’ve been caring for you up until this time but like now what do I do?

Oh, I can wash your body, I can do one more act of love for you. We would like, you know, we cover people’s bodies with like maybe a quilt that has some meaning in our community. We cover them in their artwork or their books or their music.
We play music in the room. We fill it with flowers and candles for reasons we won’t talk about. Yeah, and so I think that that ritual is really beautiful and we can only do that because we are doing it in our own homes.
Yeah.

Donald:
And that is, you know, it’s like, you know, I think getting back to what Megan was saying earlier about sort of mystical experiences and whatever, there’s definitely for me a sense that the person’s left their body but their essence is still hanging around, their soul still has something. And so just to be in that place where, you know, death is like birth in the sense that it’s struggle. It’s hard for people to get out of their bodies.
Just like it’s hard for the body to get born into this world, it’s hard for the soul to get born out of it. And when the soul has left the body and the body is there, there’s just this sense of peace, you know. And so to be able to be together and to honor that and to just have that love and do all the things that Megan was just talking about is really quite a beautiful thing that really happens.
It has to be at home. Yeah.

Theo:
Well, thanks so much for talking to us, you all. This has been a really powerful conversation and I’m glad we got to sit down and do this together.

Donald:
Thank you.

Theo:
Thanks, Theo.

Donald:
Thanks, Lydia. Thank you. Thank you for inviting us.

Lydia:
Yeah, we definitely appreciate it. So thanks to everyone who joined us for the conversation. When we first looked at having this conversation, we weren’t sure how it was going to go in having so many people, but it was a really beautiful conversation to have about a topic that I think we often don’t talk enough about.

Theo:
Yeah, I was also worried about having so many folks, but I thought it worked really well in that it also kind of engendered the dynamic they talked about. It was really a whole community doing this work together and that no one of them by themselves could have done it all and they all had different roles and parts to play. So it felt very fitting to have a chunk of the community there to share about it too.

Lydia:
Yeah, I think my guess is that for many Catholic workers, particularly houses that do larger hospitality, that death is not unheard of in many houses. But I do think it is a little more unique to have had such a strong focus on hospice, both in their work in the AIDS epidemic, but then also now and having two different guests recently with hospice. One of the things that really stuck out to me was what a beautiful opportunity hospice care is in displaying the personalism that’s needed, both to the person who’s dying, but then also to the one who is giving care.

Theo:
Yeah, it feels a little bit like a pinnacle for it, especially, I mean, we touched on this in the conversation, just how death has become so impersonal and so just sent to professionals to be dealt with in a place that isn’t looked at. So it is like a very special thing in many ways. I remember reading some years ago that nowadays only the very rich or the very poor get the privilege of dying at home, which is an interesting thought, their meaning being the people who can afford to have personal care and the people who can’t afford to have any care at all in this world of ours.
But Rudy and Alberto got to have some of that very intense and loving care that, unfortunately, most people in our world don’t get to experience, let alone most people who were living on the street previously and in that economic situation.

Lydia:
And LA has a more unique model, correct me if I’m wrong, Theo, but they have no time limit for people where you can sort of stay as long as you need to. And that sort of commitment of as long as you need to, even until the end of life, is something you don’t really see anywhere else now. We don’t see that sort of open-ended commitment of dedication to people.

Theo:
Yeah, I don’t think it’s totally unique that they have guests of such a long term throughout the movement, but even though the folks who do have longer term guests, I don’t know of any of them that are doing the end-of-life stuff and not to throw shade or anything. It’s a lot of work. And if you don’t have a robust community or extended community the way LA does, it’s difficult or impossible to do all that by themselves.
We didn’t really get into it, I don’t think, too much in the conversation, but it was a lot of work for those people. And it’s not like they just stopped running the soup kitchen or doing all the things that they normally did. Yeah, I mean, the house lady was a little bit dirtier because instead of cleaning the bathrooms or sweeping the floors, somebody was helping to help Rudy throughout the day.
But it really is pretty amazing all the work they were doing around this for a good chunk of time, many months, you know.

Lydia:
And that’s also a lot of logistics to coordinate with medical providers, both for the regular medical appointments, but also for to be able to get medical providers into the home. Yeah, that’s a lot. So really, really special, though, that they’re able to do that both for the people who are their guests, but then also for the workers themselves.

Theo:
Yeah, and it’s great, too, that they had both, coming from different backgrounds, were able to fill these different roles, too. You know, in the Catholic worker movement, we’re a little bit skeptical of specialization in some ways, but, you know, we need nurses like Mary Ann, who was able to be there with Rudy. And when the doctors are kind of telling him something a little bit incomprehensible, she can kind of say, wait, stop.
Let’s slow down and explain what exactly is going on in these different scenarios. Where I don’t think it came up, but Donald spent many years professionally navigating the Medi-Cal system, the Medicaid, you know, state health system in California. So people like that, who neither of them currently live at the house, they don’t do the L.A. Catholic worker full time, but having them in the L.A. Catholic worker corner was just invaluable to them.

Lydia:
Yeah, yeah, definitely. I believe there is currently, or had been in the past, a Catholic worker, I want to say in Texas, that primarily just did hospice, but the name is escaping me right now.

Theo:
I think you’re right, and maybe we should hesitate to bring it up if we don’t really know, but I believe it was the Austin house, and I believe, actually, they closed down about a year ago. In part because it was mostly one very brave woman taking on a large amount of that work, and as we were saying, it’s a lot, and as folks get older, she was getting older, it gets even harder to deal with. You know, especially with hospice folks, if you’re having to help move people and do physical work like that, it just gets too hard sometimes.

Lydia:
Well, I suppose with the idea of hospice and dying, it does sort of have some historical basis in the Catholic worker, with both Dorothy living out the end of her days of life in the New York worker, and Peter at one of the farms, both being able to spend the entirety of their lives in the communities that they were so dedicated to.

Theo:
Yeah, and it’s a beautiful thing that they were able to, they were able to die at their home, at the Catholic worker house, just like the LA Catholic worker kind of became Rudy and Alberto’s home for so many years at the end of their life.

Lydia:
Well, this wasn’t necessarily the sometimes lighthearted and funny antidotes and stories that we hear, but I feel like a very impactful episode for all of us. That wraps up this episode of Coffee with Catholic Workers. If you want to reach out to us with any comments, suggestions, clarification of thought, you can feel free to email us at coffeewithcatholicworkers at gmail.com.
We want to thank Chris for editing our sound, David Hayes for our music, and Becky McIntyre for our graphic.

Theo:
Thanks again for joining us for some clarification of thought. Hopefully today’s discussion has been enlightening and maybe even you’re encouraged to go out and help build a world where it’s easier to be good.

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Coffee with Catholic Workers is a podcast by and about Catholic Workers. Every two weeks, join Lydia Wong and Theo Kayser for a conversation with some of their favorite Catholic Worker folk. Special thanks to sound engineer Chris of Bloomington, IN.