To Know Ends: Honest conversations about aging, illness, and dying well
To Know Ends: Honest conversations about aging, illness, and dying well
The Language Before Words
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Alena Dailey spent 15 years working in senior living, watching hospice teams care for residents and their families from the outside. She understood the landscape. She knew the language. She thought she was ready.
Then, at 29, she became her grandmother's primary evening caregiver. And everything she thought she knew fell away.
What followed was a year and a half on hospice that Alena now calls the best out of the last five years of her life. Not because the dying stopped, but because the rushing did. Because a layer of support arrived that let her be more than just a caregiver. It let her be a granddaughter again.
In this episode, Alena teaches us about healing touch—not as a technique, but as a choice to be fully present with another person. She talks about the moment her grandmother asked her to rub lotion on her feet, and why that small act of presence mattered more than any task on a checklist. She talks about what you'll actually miss when someone is gone. And she talks about what it takes to separate the role of caregiver from the person you are, so that neither one consumes you.
Episode 2 of To Know Ends is for anyone currently caring for a loved one, or anyone who will be.
It's a reminder that healing happens not through doing everything right, but through being present with what is.
In our first episode, Viktoria Ivachek reminded us that attention is a gift. But knowing that intellectually and actually experiencing it, well, that's two different things. When someone you love is in the final season of their life and you're the one holding the thread, the weight of everything trying to be perfect can eclipse the possibility of simply being there. Today we are talking with Alina Daly about what happens when you finally let the weight go. She knew the language of aging and care before she ever needed it personally, but nothing prepared her for what it would mean to be 29 years old and your grandmother's primary caregiver and what it would take to stop trying to do it all and start being present with her. To no ends is a podcast where we pull up a chair for the fears so many of us have about aging, illness, and death. And we talk to those fears. Ask it some questions. That's what To No Ends is about. To figure out what happens when we stop avoiding our fears and what we find when we center life until the very end. I'm chance. Welcome to No Ends. So, Alina, thank you so much for joining us. We really appreciate it. Um, and we're gonna just jump right in. Can you tell me a little bit about your story? I know you spent 15 years as a director of wellness and engagement in long-term care. What drew you to that work in the first place?
SPEAKER_00Well, I've always been attracted to uh the aging population, and I started my um undergrad in um psychology and gerontology. So it really just led me into my first job as an activities assistant, and then I just grew because I loved being able to provide the resources. Um and I think really just the stories behind all of the residents really is what drew me and kept me going for so long.
SPEAKER_01Yeah. And gerontology, what what is that?
SPEAKER_00So that's the study of aging. Okay, okay, amazing.
SPEAKER_01So so it was the stories and the people really that that drew you into that. Um and you were working in a continuous care retirement community for some time. Yeah. So I worked in a uh continuing Alina spent a decade and a half in a continuing care retirement community, moving from activities assistant to the management role overseeing wellness for the entire community. In that position, she had a front row seat to something most of us never see up close. How hospice teams work alongside nursing staff, how families responded, and what resistance looked like and what acceptance may mean. What did you observe about hospice before ever actually being a part of hospices?
SPEAKER_00It's always been interesting. Um, with hospice being that uh that second layer of support, I think um you when you're working in the long-term care and uh senior living, you forget that. So you first see it as um a group of people coming in, and um sometimes the nurses think that um they might be stepping on their toes. It's a it's another company coming in to take care of their resident who they are supposed to be taking care of. So there's that dynamic, but also there's the dynamic of the volunteers, and I got to see um the volunteers coming in to care for the residents and um really being able to be on that side where I got to see all of the pieces coming together was really special.
SPEAKER_01Yeah. What what was the reputation of hospice like generally? Like what's the uh so sort of stepping on toes, were there other things that maybe some of the patients or um other folks that you were working with, ideas that they had about hospice that Yeah, oh definitely.
SPEAKER_00So families a lot of times um they when they heard the word hospice, they weren't ready. So they felt that they were giving up on their loved one, or us as the facility, we were giving up on their loved one. So there was definitely that piece as well as uh the nursing staff there. Um, they would either be fully engaged and love that second layer of help, or they would have that feeling of being stepped on.
SPEAKER_01Very, very interesting. What Alina witnessed was the gap between what hospice actually is and what people believe it to be. It's not a surrender, it's a repositioning, a layer of support that allows everyone to step back from the crisis mindset and into something more sustainable. But people didn't know that. They heard the word and they heard giving up. Um, and did you think that there were ways that the hospice folks coming in um kind of addressed some of those misconceptions and ideas?
SPEAKER_00I think a lot of when um looking back and the um especially the development team would come in and do a lot of um education pieces for the staff, that was really helpful. And then the volunteers that came in, um, even though they were probably assigned to just one of the residents, they would end up engaging with all of the residents, and um, that really helped create uh more sense of um you're supposed to be here.
SPEAKER_01Yeah, yeah. What do you think is behind the reaction of other healthcare um givers sort of thinking or feeling like hospice is this thing that kind of comes in and steps on people's toes and you know are doing things that maybe I don't know, it like there's some tension there. What do you think is behind that?
SPEAKER_00You know, I think sometimes people let their egos get involved where they're it's their resident, they're supposed to be taking care of them. Again, it's that whole feeling um that they don't want to give up on the resident. Um, even the doctors in the facilities, I think sometimes um there's that that feeling of I can do it all for my resident. They're here um so I can take care of them when in reality you need that extra help. There, there's it's not wrong to ask for that help. And especially for the families, they need that extra help.
SPEAKER_01Yeah, like they're not mutually exclusive. Like you can provide for your patient and also get extra help for them. Exactly. Exactly. Um and you told me in one of our conversations prior to this one that you had an employee who was a volunteer at Hospice of the Chesapeake, um, and they told you about the integrative arts opening. Um so what made you say yes to that?
SPEAKER_00So I think uh the pandemic hit, and it was really difficult being um that person to be almost everything for the residents, and um and I was really starting to feel that that burnout. Um, and I felt that I needed um a change. And my employee, she was a part-time employee in the memory care, um, was uh mentioning that she's a volunteer here at hospice and there was the integrative arts position, and she knew that with my background, she thought that I'd be interested. And um I immediately thought, why not? Let's let's try it and and grow. And um, and it's really close to my home. Okay, that that's a plus.
SPEAKER_01That is a plus. Um, and you're not actually the first person to mention that they went from a space of feeling burnt out and then found themselves in hospice. And I find that particularly interesting. Yeah, a couple of people have said that.
SPEAKER_00I think with hospice, um, knowing that you're the added layer of support was really helpful, that um these uh patients they do have their primary caregiver, but where that added support was really helpful, and knowing that um they're not only getting the volunteer services, there's the chaplain services, there's really so many pieces that um a patient is is getting when they're on hospice, I think that really um evens out that burnout feeling. You don't feel that you're everything.
SPEAKER_01Hospice creates a different kind of infrastructure. It says you are not responsible for being everything. There are volunteers, chaplains, nurses, and other family members all showing up. For caregivers, that shared responsibility, it isn't just practical relief. It's the difference between burning out and being able to actually be present. And the presence, as we're learning, is what matters most. According to Johns Hopkins Bloomberg School of Public Health, there are 63 million caregivers in the United States right now. 53 million of them are unpaid, providing care for a loved one at home while often working full-time jobs themselves. An invisible workforce providing over $870 billion in unpaid labor every year. But those numbers don't capture what it feels like to be one person. At 29, saying yes to being your grandmother's caregiver. Alina had spent her entire career in senior living. She understood the landscape, she understood the policy, she understood the crises, and she still walked in thinking it would be simple, that her grandmother would follow her instructions, that her training would translate to wisdom. I asked her, what did you think caregiving would look like before you actually were one?
SPEAKER_00So I think I had um the idea that it would be easy since I worked in long-term care. I was fully engaged in uh the the senior living aspect. So I was surrounded by uh residents and and patients all the time. Um, so I thought that it would be simple. Um and that my um it was my grandmother and thinking that she would follow everything that I would tell her to do and when to do it. And um and it turns out that is not true. Um, and um just when you are a caregiver and you are caregiving for a loved one, you do become their entire world. And I think sometimes you forget that you're their entire world, but you have a whole world outside of that. Um, and that's where it gets really hard. Yeah, absolutely.
SPEAKER_01This is the caregiver's trap. Perfectionism dressed up as love, the belief that if you do enough, take on enough, manage enough, you can somehow prevent the inevitable. Alina felt it. Most young caregivers do. She became the sole evening caregiver while her mother handled the days, and the weight settled in fast. What changed everything was the arrival of something she'd only observed from a distance before. Absolutely. I mean, and twenty-nine years old to be doing that, you're in the middle of life and I just was married and everything. Yeah, yeah, lots of things are happening. And you said that your mom took the days and you took the evenings. Um, so what did your evenings look like with your grandmother?
SPEAKER_00So my evenings, I'd get off work and I would go to my grandmother's house. Thankfully, she lived really close, and I would get her her dinner ready and then find her favorite show, get her changed, do all of the um the caregiving pieces, make sure that she took her nighttime medicine, make sure that she had all of her things for when she did go to bed, that she was ready, water. Um, and then also just making sure that I was also still the granddaughter. So, like watching the show with her, engaging. Um, and sometimes that was really hard. Um, there were days that I would get there and I thought, okay, I have my checklist. I'm gonna get this checklist done and I'm gonna go home. Um, but my grandmother wouldn't let that happen. She knew she needed some time to be with me. Um and so that that was really hard.
SPEAKER_01Which which show were you guys watching?
SPEAKER_00Oh, she was a big friendship. Okay, okay. That's a great thing. Everybody loves Raymond.
SPEAKER_01Those are great. So that's awesome. Um, and your grandmother was on hospice for almost a year and a half, you said, which is um considering how folks understand hospice typically as like, ah, we have a couple days, that's a really long time. Um, and they think that you know, hospice is just in the very last days of life. Um, so what did a year and a half of hospice support actually give your family?
SPEAKER_00So honestly, I um was actually just recently talking to my mom about this, that that year and a half was truly um the the best out of the last five years for her um because we had that support. It wasn't just myself and my mom and my brother occasionally. So it wasn't just us caring for her, and I think that's what truly gave her um a great year and a half um of being able to spend time with us and not just um focused on um the the different the disease that was um happening.
SPEAKER_01A year and a half, the best out of the last five years, not despite the dying, but alongside it. What Alina's story reveals is that the presence of hospice care didn't diminish the time, it transformed it. And for Alina personally, it did something equally important. It gave her back her identity, and uh you said you couldn't have done it without hospice. Um so what would have broken down without the layer of support?
SPEAKER_00I think um first we would lose our relationship. I I think there would have been a lot more caregiver burnout. I wouldn't have felt um that I was her granddaughter and then a caregiver. I would have felt that I was just the caregiver. And um, same with my mom. I think it truly allowed us. Um, of course, we still had those caregiver pieces, but it allowed us to be together. Um, and I wasn't worried about getting her in her pajamas because the hospice aid would come at different times and help. I wasn't worried about making sure that she had her medication because the team was helping with that. And um, and same when she wasn't able to uh drive go with us to church, the chaplain came to her and um I think that gave her an outlet again that for years she wasn't able to go to church and it it came to her.
SPEAKER_01Yeah, yeah, amazing. And it sounds like you guys utilize like pretty much all the different services, which is which is what one should do. Um, really milk it for everything that it can offer. So the volunteers, the chaplains. Um, what made you all so open to actually accepting that help when so many families resist it?
SPEAKER_00I think um fortunately, with my work experience working in long-term care and senior living, I had been a part of that. I knew, and um, and I just um knew that these pieces were what was going to keep her out of a nursing home and in her own home so she would be the most comfortable and we needed that support or else it she would not have um lasted in in her home.
SPEAKER_01Yeah, and like I think people don't realize like this is you can make this decision to prevent the constant hospital visits and emergency rooms. And that was the main piece.
SPEAKER_00She was uh continu like it was probably once a month we were ending up in the hospital and um it was really rough. She wasn't able to really um move as well. So getting to the hospital, leaving the hospital, it just became so hard on her. So once that um kind of went out of the picture, uh she truly thrived.
SPEAKER_01Yeah, yeah, absolutely. Um, and as we said earlier, like we are in a national caregiver crisis right now. Um, and we're gonna be exploring that a lot more. And there are millions of people who are providing this unpaid care to loved ones. So many of them are young right now. Um and you were 29. You were, you know, super young doing this work. So what do you wish someone had told you when you were 29 and just stepping into that role?
SPEAKER_00I I I wish that somebody would tell me that it's okay to take a break and that it's okay if I can't do it all, and that um there will be days that will be very tough and emotional, but then there will be those good days, and to really um hone in on those good days and not let that pass by thinking about that checklist that you have to do and just being present.
SPEAKER_01This is the real work, the work of permissions, permission to be more than one thing, permission to let support in, permission to be a granddaughter, not just a caregiver. And that permission opened a door to something that now, years later, shapes Alina's entire practice. There's a moment in Alina's story that contains the whole journey. It's small, almost unremarkable on the surface, but it's the story she returns to when she talks about what she's learned. Her grandmother asked her to rub lotion on her feet.
SPEAKER_00And um I remember so many times my grandmother being like, Can you please rub the lotion on my feet? But uh 29-year-old Alina was um not going to do that. And now looking back, I wish that I did because I know that it would have um been so comforting and so calming to her. Um, so I wish somebody said, Um, just get out of your get out of your head and and and and just do it. Yeah.
SPEAKER_01There is so much in this one moment, a simple request, a body asking for care, and a young woman trained in care, locked inside her own resistance. Why? Maybe shame, maybe fear of intimacy with the body, maybe the overwhelm of everything else on the mental checklist, the I can't do it all that translates to I won't do this either. Years later, Alina teaches others to do exactly what younger Alina couldn't do. Compassionate touch, not clinical, not performative, just hands, lotion, and the permission to be present. That is what healing touch actually is. As Alina looks back on her time as her grandmother's caregiver, one detail keeps surfacing the small scenes, the moments that didn't feel like work at all.
SPEAKER_00Just being able to, as I said, watch the show with my grandmother and not just put it on and feel that I had to do ten other pieces on my list. Um, but we could just watch and laugh together. There was a time where uh her hair was a mess, and I remember saying, Can I do your hair? And we did her hair, and she hadn't let anyone do her hair in a while. So we had a moment together, and it had been a long time since um we were able to. So um, again, it's just being able to look back and knowing that we still had those moments, and it it didn't pass us by.
SPEAKER_01This is what grief reaches for. Not the perfect care, but the hairstyling moment that happened because she acts. The show watched side by side without a second agenda, the hands held when there was nothing else to do. It's not just a technique, it's a choice to be fully present with another person's body and life as it is, without trying to fix it or rush through it. And these are the moments that actually sustain you when the person is gone. These are the moments that become the whole story. If someone is listening to this right now and they just found out that they're gonna be a caregiver, um, and they're terrified, uh, what would you want them to hear? What would you tell them?
SPEAKER_00I would say reach out for support that you can't take it all on yourself as much as you want to, as much as you've promised that you would take it all on, find a support group, find find your friends, let your friends in on what's happening. Um, don't be afraid to talk about it, and um don't be afraid to connect with somebody and and share the the caregiving load. Um, but also making sure that yes, you have a checklist of what you need to get done, but have Having those small moments of you being with your loved one is so important because that's what you're going to miss uh when they do pass. You you want those moments of just being together, laughing, watching a show, holding hands, making a meal together, eating a meal together. Um, don't um don't don't rush that.
SPEAKER_01This is an invitation to invite witnesses and supporters into the weight, and most importantly, to preserve the moments that matter. Because those are the only moments that will actually sustain you when the person you love is gone. And you've been in this work for a long time. Uh, what do you know now about living that you didn't know before?
SPEAKER_00Oh, that's a deep question. Um again, I think um death death comes. With life comes death, and you can't you can't hide from it. If you're hiding from it, then you're not going to truly live. And to be okay with um when there is a diagnosis, um, talking about it, finding all the information, finding all the support you need. I think that um, because as I said, life with life comes death. You're not going to you're not going to outrun it. Um, so being okay with the conversations and um and finding um and the support, that I think that's the biggest piece.
SPEAKER_01There is something almost defiant in what Alina is saying. The choice to look directly at what's coming instead of away from it. The choice to have the conversations, to find the support, to stop trying to outrun death, and instead make peace with it as a companion to life. And in that peace, something shifts. The small moments stop being interruptions and the real work of dying. They become the real work. Hands on feet, hair being styled, a show watch together, laughter. Alina Daly's story is on the surface about caregiving, but it's actually about something deeper. It's about what happens when we stop trying to do everything right and we start being present with what is. It's about healing that has nothing to do with fixing, and everything to do with touch, attention, with showing up as a whole person, not just in a role, in her teaching, in her care, in the way she talks about her grandmother now. You can see what a year and a half of that kind of presence does. It transforms not just the dying, but the living. It cracks open the armor of perfectionism and lets in the possibility of real connection. That is the language before words. That is what Hospice made possible for Alina. In episode 1, Victoria spoke about the gift of attention. In episode 2, Alina showed us the power of presence. And next, Jennifer Ward invites us into the grief that comes before. Jennifer Ward is a social worker and bereavement counselor who talks about anticipatory grief, the journey of grieving before loss. And for black families, she's learned there's an extra layer: a fear of the healthcare system, mistrust of the word hospice itself. She's learned that before we can offer attention and presence, we sometimes have to first dismantle the stigma and mistrust. That's next time, onto no ends.