WEBVTT
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In our first episode, Viktoria Ivachek reminded us that attention is a gift.
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But knowing that intellectually and actually experiencing it, well, that's two different things.
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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.
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Today we are talking with Alina Daly about what happens when you finally let the weight go.
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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.
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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.
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And we talk to those fears.
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Ask it some questions.
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That's what To No Ends is about.
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To figure out what happens when we stop avoiding our fears and what we find when we center life until the very end.
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I'm chance.
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Welcome to No Ends.
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So, Alina, thank you so much for joining us.
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We really appreciate it.
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Um, and we're gonna just jump right in.
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Can you tell me a little bit about your story?
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I know you spent 15 years as a director of wellness and engagement in long-term care.
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What drew you to that work in the first place?
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Well, I've always been attracted to uh the aging population, and I started my um undergrad in um psychology and gerontology.
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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.
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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.
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Yeah.
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And gerontology, what what is that?
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So that's the study of aging.
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Okay, okay, amazing.
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So so it was the stories and the people really that that drew you into that.
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Um and you were working in a continuous care retirement community for some time.
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Yeah.
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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.
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In that position, she had a front row seat to something most of us never see up close.
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How hospice teams work alongside nursing staff, how families responded, and what resistance looked like and what acceptance may mean.
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What did you observe about hospice before ever actually being a part of hospices?
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It's always been interesting.
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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.
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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.
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It's a it's another company coming in to take care of their resident who they are supposed to be taking care of.
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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.
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Yeah.
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What what was the reputation of hospice like generally?
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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.
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So families a lot of times um they when they heard the word hospice, they weren't ready.
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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.
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So there was definitely that piece as well as uh the nursing staff there.
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Um, they would either be fully engaged and love that second layer of help, or they would have that feeling of being stepped on.
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Very, very interesting.
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What Alina witnessed was the gap between what hospice actually is and what people believe it to be.
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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.
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But people didn't know that.
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They heard the word and they heard giving up.
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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?
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I 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.
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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.
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Yeah, yeah.
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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.
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What do you think is behind that?
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You 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.
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Again, it's that whole feeling um that they don't want to give up on the resident.
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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.
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They're here um so I can take care of them when in reality you need that extra help.
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There, there's it's not wrong to ask for that help.
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And especially for the families, they need that extra help.
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Yeah, like they're not mutually exclusive.
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Like you can provide for your patient and also get extra help for them.
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Exactly.
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Exactly.
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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.
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Um so what made you say yes to that?
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So 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.
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Um, and I felt that I needed um a change.
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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.
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And um I immediately thought, why not?
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Let's let's try it and and grow.
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And um, and it's really close to my home.
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Okay, that that's a plus.
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That is a plus.
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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.
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And I find that particularly interesting.
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Yeah, a couple of people have said that.
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I 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.
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You don't feel that you're everything.
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Hospice creates a different kind of infrastructure.
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It says you are not responsible for being everything.
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There are volunteers, chaplains, nurses, and other family members all showing up.
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For caregivers, that shared responsibility, it isn't just practical relief.
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It's the difference between burning out and being able to actually be present.
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And the presence, as we're learning, is what matters most.
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According to Johns Hopkins Bloomberg School of Public Health, there are 63 million caregivers in the United States right now.
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53 million of them are unpaid, providing care for a loved one at home while often working full-time jobs themselves.
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An invisible workforce providing over$870 billion in unpaid labor every year.
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But those numbers don't capture what it feels like to be one person.
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At 29, saying yes to being your grandmother's caregiver.
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Alina had spent her entire career in senior living.
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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.
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I asked her, what did you think caregiving would look like before you actually were one?
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So I think I had um the idea that it would be easy since I worked in long-term care.
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I was fully engaged in uh the the senior living aspect.
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So I was surrounded by uh residents and and patients all the time.
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Um, so I thought that it would be simple.
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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.
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And um and it turns out that is not true.
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Um, and um just when you are a caregiver and you are caregiving for a loved one, you do become their entire world.
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And I think sometimes you forget that you're their entire world, but you have a whole world outside of that.
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Um, and that's where it gets really hard.
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Yeah, absolutely.
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This is the caregiver's trap.
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Perfectionism dressed up as love, the belief that if you do enough, take on enough, manage enough, you can somehow prevent the inevitable.
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Alina felt it.
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Most young caregivers do.
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She became the sole evening caregiver while her mother handled the days, and the weight settled in fast.
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What changed everything was the arrival of something she'd only observed from a distance before.
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Absolutely.
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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.
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Yeah, yeah, lots of things are happening.
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And you said that your mom took the days and you took the evenings.
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Um, so what did your evenings look like with your grandmother?
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So my evenings, I'd get off work and I would go to my grandmother's house.
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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.
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Um, and then also just making sure that I was also still the granddaughter.
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So, like watching the show with her, engaging.
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Um, and sometimes that was really hard.
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Um, there were days that I would get there and I thought, okay, I have my checklist.
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I'm gonna get this checklist done and I'm gonna go home.
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Um, but my grandmother wouldn't let that happen.
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She knew she needed some time to be with me.
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Um and so that that was really hard.
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Which which show were you guys watching?
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Oh, she was a big friendship.
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Okay, okay.
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That's a great thing.
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Everybody loves Raymond.
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Those are great.
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So that's awesome.
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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.
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Um, and they think that you know, hospice is just in the very last days of life.
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Um, so what did a year and a half of hospice support actually give your family?
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So 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.
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It wasn't just myself and my mom and my brother occasionally.
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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.
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A year and a half, the best out of the last five years, not despite the dying, but alongside it.
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What Alina's story reveals is that the presence of hospice care didn't diminish the time, it transformed it.
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And for Alina personally, it did something equally important.
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It gave her back her identity, and uh you said you couldn't have done it without hospice.
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Um so what would have broken down without the layer of support?
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I think um first we would lose our relationship.
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I I think there would have been a lot more caregiver burnout.
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I wouldn't have felt um that I was her granddaughter and then a caregiver.
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I would have felt that I was just the caregiver.
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And um, same with my mom.
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I think it truly allowed us.
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Um, of course, we still had those caregiver pieces, but it allowed us to be together.
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Um, and I wasn't worried about getting her in her pajamas because the hospice aid would come at different times and help.
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I wasn't worried about making sure that she had her medication because the team was helping with that.
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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.
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Yeah, yeah, amazing.
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And it sounds like you guys utilize like pretty much all the different services, which is which is what one should do.
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Um, really milk it for everything that it can offer.
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So the volunteers, the chaplains.
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Um, what made you all so open to actually accepting that help when so many families resist it?
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I think um fortunately, with my work experience working in long-term care and senior living, I had been a part of that.
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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.
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Yeah, 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.
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And that was the main piece.
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She was uh continu like it was probably once a month we were ending up in the hospital and um it was really rough.
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She wasn't able to really um move as well.
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So getting to the hospital, leaving the hospital, it just became so hard on her.
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So once that um kind of went out of the picture, uh she truly thrived.
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Yeah, yeah, absolutely.
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Um, and as we said earlier, like we are in a national caregiver crisis right now.
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Um, and we're gonna be exploring that a lot more.
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And there are millions of people who are providing this unpaid care to loved ones.
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So many of them are young right now.
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Um and you were 29.
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You were, you know, super young doing this work.
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So what do you wish someone had told you when you were 29 and just stepping into that role?
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I 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.
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This 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.
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And that permission opened a door to something that now, years later, shapes Alina's entire practice.
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There's a moment in Alina's story that contains the whole journey.
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It's small, almost unremarkable on the surface, but it's the story she returns to when she talks about what she's learned.
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Her grandmother asked her to rub lotion on her feet.
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And um I remember so many times my grandmother being like, Can you please rub the lotion on my feet?
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But uh 29-year-old Alina was um not going to do that.
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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.
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Um, so I wish somebody said, Um, just get out of your get out of your head and and and and just do it.
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Yeah.
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There 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.
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Why?
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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.
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Years later, Alina teaches others to do exactly what younger Alina couldn't do.
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Compassionate touch, not clinical, not performative, just hands, lotion, and the permission to be present.
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That is what healing touch actually is.
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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.
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Just 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.
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Um, but we could just watch and laugh together.
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There was a time where uh her hair was a mess, and I remember saying, Can I do your hair?
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And we did her hair, and she hadn't let anyone do her hair in a while.
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So we had a moment together, and it had been a long time since um we were able to.
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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.
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This is what grief reaches for.
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Not the perfect care, but the hairstyling moment that happened because she acts.
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The show watched side by side without a second agenda, the hands held when there was nothing else to do.
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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.
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And these are the moments that actually sustain you when the person is gone.
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These are the moments that become the whole story.
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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?
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What would you tell them?
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I 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.
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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.
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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.
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You you want those moments of just being together, laughing, watching a show, holding hands, making a meal together, eating a meal together.
00:22:16.960 --> 00:22:20.960
Um, don't um don't don't rush that.
00:22:22.720 --> 00:22:34.799
This is an invitation to invite witnesses and supporters into the weight, and most importantly, to preserve the moments that matter.
00:22:35.279 --> 00:22:41.759
Because those are the only moments that will actually sustain you when the person you love is gone.
00:22:42.400 --> 00:22:45.680
And you've been in this work for a long time.
00:22:45.839 --> 00:22:50.400
Uh, what do you know now about living that you didn't know before?
00:22:50.720 --> 00:22:52.319
Oh, that's a deep question.
00:22:53.039 --> 00:23:00.400
Um again, I think um death death comes.
00:23:00.640 --> 00:23:04.720
With life comes death, and you can't you can't hide from it.
00:23:04.880 --> 00:23:09.039
If you're hiding from it, then you're not going to truly live.
00:23:09.359 --> 00:23:21.279
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.
00:23:21.440 --> 00:23:25.519
I think that um, because as I said, life with life comes death.
00:23:25.680 --> 00:23:29.119
You're not going to you're not going to outrun it.
00:23:29.279 --> 00:23:39.440
Um, so being okay with the conversations and um and finding um and the support, that I think that's the biggest piece.
00:23:40.799 --> 00:23:44.559
There is something almost defiant in what Alina is saying.
00:23:44.720 --> 00:23:49.440
The choice to look directly at what's coming instead of away from it.
00:23:50.000 --> 00:24:01.599
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.
00:24:01.839 --> 00:24:04.400
And in that peace, something shifts.
00:24:04.640 --> 00:24:09.920
The small moments stop being interruptions and the real work of dying.
00:24:10.160 --> 00:24:12.000
They become the real work.
00:24:12.400 --> 00:24:18.000
Hands on feet, hair being styled, a show watch together, laughter.
00:24:18.640 --> 00:24:25.839
Alina Daly's story is on the surface about caregiving, but it's actually about something deeper.
00:24:26.079 --> 00:24:32.160
It's about what happens when we stop trying to do everything right and we start being present with what is.
00:24:32.400 --> 00:24:49.519
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.
00:24:49.839 --> 00:24:53.839
You can see what a year and a half of that kind of presence does.
00:24:54.240 --> 00:24:58.400
It transforms not just the dying, but the living.
00:24:58.559 --> 00:25:05.599
It cracks open the armor of perfectionism and lets in the possibility of real connection.
00:25:06.319 --> 00:25:08.799
That is the language before words.
00:25:09.200 --> 00:25:12.400
That is what Hospice made possible for Alina.
00:25:17.279 --> 00:25:21.200
In episode 1, Victoria spoke about the gift of attention.
00:25:21.359 --> 00:25:24.960
In episode 2, Alina showed us the power of presence.
00:25:25.200 --> 00:25:30.000
And next, Jennifer Ward invites us into the grief that comes before.
00:25:30.319 --> 00:25:39.680
Jennifer Ward is a social worker and bereavement counselor who talks about anticipatory grief, the journey of grieving before loss.
00:25:39.920 --> 00:25:48.799
And for black families, she's learned there's an extra layer: a fear of the healthcare system, mistrust of the word hospice itself.
00:25:49.039 --> 00:25:56.480
She's learned that before we can offer attention and presence, we sometimes have to first dismantle the stigma and mistrust.
00:25:56.720 --> 00:25:59.119
That's next time, onto no ends.
00:00:02.959 --> 00:00:08.240
In our first episode, Viktoria Ivachek reminded us that attention is a gift.
00:00:08.720 --> 00:00:16.160
But knowing that intellectually and actually experiencing it, well, that's two different things.
00:00:16.559 --> 00:00:29.440
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.
00:00:29.920 --> 00:00:36.799
Today we are talking with Alina Daly about what happens when you finally let the weight go.
00:00:37.359 --> 00:00:56.640
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.
00:00:56.960 --> 00:01:04.480
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.
00:01:04.640 --> 00:01:06.319
And we talk to those fears.
00:01:06.560 --> 00:01:08.319
Ask it some questions.
00:01:08.799 --> 00:01:10.959
That's what To No Ends is about.
00:01:11.120 --> 00:01:18.560
To figure out what happens when we stop avoiding our fears and what we find when we center life until the very end.
00:01:18.799 --> 00:01:19.920
I'm chance.
00:01:20.239 --> 00:01:22.640
Welcome to No Ends.
00:01:26.560 --> 00:01:28.959
So, Alina, thank you so much for joining us.
00:01:29.040 --> 00:01:30.480
We really appreciate it.
00:01:30.719 --> 00:01:32.799
Um, and we're gonna just jump right in.
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Can you tell me a little bit about your story?
00:01:35.359 --> 00:01:40.959
I know you spent 15 years as a director of wellness and engagement in long-term care.
00:01:41.120 --> 00:01:43.439
What drew you to that work in the first place?
00:01:43.680 --> 00:01:54.319
Well, I've always been attracted to uh the aging population, and I started my um undergrad in um psychology and gerontology.
00:01:54.719 --> 00:02:05.200
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.
00:02:05.439 --> 00:02:15.360
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.
00:02:15.840 --> 00:02:16.000
Yeah.
00:02:16.159 --> 00:02:18.240
And gerontology, what what is that?
00:02:18.479 --> 00:02:19.759
So that's the study of aging.
00:02:20.159 --> 00:02:21.599
Okay, okay, amazing.
00:02:21.840 --> 00:02:26.879
So so it was the stories and the people really that that drew you into that.
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Um and you were working in a continuous care retirement community for some time.
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Yeah.
00:02:32.879 --> 00:02:45.840
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.
00:02:46.080 --> 00:02:51.439
In that position, she had a front row seat to something most of us never see up close.
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How hospice teams work alongside nursing staff, how families responded, and what resistance looked like and what acceptance may mean.
00:03:01.680 --> 00:03:07.599
What did you observe about hospice before ever actually being a part of hospices?
00:03:07.919 --> 00:03:09.199
It's always been interesting.
00:03:09.280 --> 00:03:22.319
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.
00:03:22.479 --> 00:03:31.120
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.
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It's a it's another company coming in to take care of their resident who they are supposed to be taking care of.
00:03:37.919 --> 00:03:56.560
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.
00:03:56.800 --> 00:03:56.960
Yeah.
00:03:57.199 --> 00:04:00.319
What what was the reputation of hospice like generally?
00:04:00.400 --> 00:04:12.159
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.
00:04:12.319 --> 00:04:17.519
So families a lot of times um they when they heard the word hospice, they weren't ready.
00:04:17.759 --> 00:04:24.560
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.
00:04:24.800 --> 00:04:29.120
So there was definitely that piece as well as uh the nursing staff there.
00:04:29.360 --> 00:04:38.240
Um, they would either be fully engaged and love that second layer of help, or they would have that feeling of being stepped on.
00:04:38.879 --> 00:04:40.240
Very, very interesting.
00:04:40.480 --> 00:04:47.439
What Alina witnessed was the gap between what hospice actually is and what people believe it to be.
00:04:47.680 --> 00:04:57.839
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.
00:04:58.160 --> 00:04:59.600
But people didn't know that.
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They heard the word and they heard giving up.
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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?
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I 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.
00:05:28.560 --> 00:05:44.639
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.
00:05:44.879 --> 00:05:45.600
Yeah, yeah.
00:05:45.920 --> 00:06:03.360
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.
00:06:03.680 --> 00:06:04.720
What do you think is behind that?
00:06:04.959 --> 00:06:12.240
You 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.
00:06:12.399 --> 00:06:16.720
Again, it's that whole feeling um that they don't want to give up on the resident.
00:06:16.879 --> 00:06:25.199
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.
00:06:25.279 --> 00:06:31.199
They're here um so I can take care of them when in reality you need that extra help.
00:06:31.279 --> 00:06:33.920
There, there's it's not wrong to ask for that help.
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And especially for the families, they need that extra help.
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Yeah, like they're not mutually exclusive.
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Like you can provide for your patient and also get extra help for them.
00:06:42.720 --> 00:06:43.040
Exactly.
00:06:43.199 --> 00:06:43.680
Exactly.
00:06:44.000 --> 00:06:58.240
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.
00:06:58.560 --> 00:07:00.560
Um so what made you say yes to that?
00:07:01.040 --> 00:07:16.639
So 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.
00:07:16.720 --> 00:07:20.160
Um, and I felt that I needed um a change.
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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.
00:07:35.439 --> 00:07:38.879
And um I immediately thought, why not?
00:07:39.040 --> 00:07:40.959
Let's let's try it and and grow.
00:07:41.120 --> 00:07:43.680
And um, and it's really close to my home.
00:07:44.000 --> 00:07:45.199
Okay, that that's a plus.
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That is a plus.
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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.
00:07:53.920 --> 00:07:55.519
And I find that particularly interesting.
00:07:55.839 --> 00:07:57.279
Yeah, a couple of people have said that.
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I 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.
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You don't feel that you're everything.
00:08:33.679 --> 00:08:37.440
Hospice creates a different kind of infrastructure.
00:08:37.759 --> 00:08:41.519
It says you are not responsible for being everything.
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There are volunteers, chaplains, nurses, and other family members all showing up.
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For caregivers, that shared responsibility, it isn't just practical relief.
00:08:53.759 --> 00:08:58.320
It's the difference between burning out and being able to actually be present.
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And the presence, as we're learning, is what matters most.
00:09:08.159 --> 00:09:15.600
According to Johns Hopkins Bloomberg School of Public Health, there are 63 million caregivers in the United States right now.
00:09:15.840 --> 00:09:23.200
53 million of them are unpaid, providing care for a loved one at home while often working full-time jobs themselves.
00:09:23.440 --> 00:09:30.639
An invisible workforce providing over$870 billion in unpaid labor every year.
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But those numbers don't capture what it feels like to be one person.
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At 29, saying yes to being your grandmother's caregiver.
00:09:39.919 --> 00:09:43.600
Alina had spent her entire career in senior living.
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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.
00:09:59.840 --> 00:10:05.440
I asked her, what did you think caregiving would look like before you actually were one?
00:10:06.399 --> 00:10:14.159
So I think I had um the idea that it would be easy since I worked in long-term care.
00:10:14.480 --> 00:10:19.919
I was fully engaged in uh the the senior living aspect.
00:10:20.080 --> 00:10:24.960
So I was surrounded by uh residents and and patients all the time.
00:10:25.120 --> 00:10:27.919
Um, so I thought that it would be simple.
00:10:28.240 --> 00:10:37.679
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.
00:10:38.000 --> 00:10:41.840
And um and it turns out that is not true.
00:10:42.480 --> 00:10:53.360
Um, and um just when you are a caregiver and you are caregiving for a loved one, you do become their entire world.
00:10:53.679 --> 00:11:00.480
And I think sometimes you forget that you're their entire world, but you have a whole world outside of that.
00:11:00.799 --> 00:11:03.600
Um, and that's where it gets really hard.
00:11:03.840 --> 00:11:04.399
Yeah, absolutely.
00:11:04.720 --> 00:11:06.720
This is the caregiver's trap.
00:11:07.120 --> 00:11:16.480
Perfectionism dressed up as love, the belief that if you do enough, take on enough, manage enough, you can somehow prevent the inevitable.
00:11:17.279 --> 00:11:18.639
Alina felt it.
00:11:18.960 --> 00:11:20.960
Most young caregivers do.
00:11:21.360 --> 00:11:28.559
She became the sole evening caregiver while her mother handled the days, and the weight settled in fast.
00:11:29.360 --> 00:11:35.519
What changed everything was the arrival of something she'd only observed from a distance before.
00:11:35.840 --> 00:11:36.320
Absolutely.
00:11:36.399 --> 00:11:42.480
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.
00:11:42.960 --> 00:11:44.879
Yeah, yeah, lots of things are happening.
00:11:44.960 --> 00:11:48.639
And you said that your mom took the days and you took the evenings.
00:11:48.799 --> 00:11:51.279
Um, so what did your evenings look like with your grandmother?
00:11:51.519 --> 00:11:56.320
So my evenings, I'd get off work and I would go to my grandmother's house.
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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.
00:12:16.960 --> 00:12:22.399
Um, and then also just making sure that I was also still the granddaughter.
00:12:22.639 --> 00:12:26.159
So, like watching the show with her, engaging.
00:12:26.320 --> 00:12:28.559
Um, and sometimes that was really hard.
00:12:28.799 --> 00:12:33.519
Um, there were days that I would get there and I thought, okay, I have my checklist.
00:12:33.679 --> 00:12:36.240
I'm gonna get this checklist done and I'm gonna go home.
00:12:36.399 --> 00:12:39.679
Um, but my grandmother wouldn't let that happen.
00:12:39.840 --> 00:12:44.159
She knew she needed some time to be with me.
00:12:44.399 --> 00:12:46.720
Um and so that that was really hard.
00:12:46.960 --> 00:12:48.399
Which which show were you guys watching?
00:12:48.559 --> 00:12:49.919
Oh, she was a big friendship.
00:12:50.080 --> 00:12:50.639
Okay, okay.
00:12:50.720 --> 00:12:51.279
That's a great thing.
00:12:51.679 --> 00:12:52.720
Everybody loves Raymond.
00:12:54.799 --> 00:12:55.600
Those are great.
00:12:55.759 --> 00:12:56.960
So that's awesome.
00:12:57.120 --> 00:13:09.679
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.
00:13:09.840 --> 00:13:14.240
Um, and they think that you know, hospice is just in the very last days of life.
00:13:14.399 --> 00:13:18.080
Um, so what did a year and a half of hospice support actually give your family?
00:13:18.399 --> 00:13:31.759
So 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.
00:13:31.919 --> 00:13:36.080
It wasn't just myself and my mom and my brother occasionally.
00:13:36.240 --> 00:13:55.519
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.
00:13:56.000 --> 00:14:03.440
A year and a half, the best out of the last five years, not despite the dying, but alongside it.
00:14:03.840 --> 00:14:11.039
What Alina's story reveals is that the presence of hospice care didn't diminish the time, it transformed it.
00:14:11.279 --> 00:14:15.039
And for Alina personally, it did something equally important.
00:14:15.600 --> 00:14:20.639
It gave her back her identity, and uh you said you couldn't have done it without hospice.
00:14:20.960 --> 00:14:25.759
Um so what would have broken down without the layer of support?
00:14:26.080 --> 00:14:30.720
I think um first we would lose our relationship.
00:14:30.879 --> 00:14:34.639
I I think there would have been a lot more caregiver burnout.
00:14:34.879 --> 00:14:40.320
I wouldn't have felt um that I was her granddaughter and then a caregiver.
00:14:40.480 --> 00:14:42.720
I would have felt that I was just the caregiver.
00:14:43.039 --> 00:14:44.960
And um, same with my mom.
00:14:45.120 --> 00:14:47.360
I think it truly allowed us.
00:14:47.440 --> 00:14:52.639
Um, of course, we still had those caregiver pieces, but it allowed us to be together.
00:14:53.039 --> 00:15:00.000
Um, and I wasn't worried about getting her in her pajamas because the hospice aid would come at different times and help.
00:15:00.240 --> 00:15:07.279
I wasn't worried about making sure that she had her medication because the team was helping with that.
00:15:07.360 --> 00:15:24.080
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.
00:15:24.320 --> 00:15:25.840
Yeah, yeah, amazing.
00:15:26.080 --> 00:15:33.279
And it sounds like you guys utilize like pretty much all the different services, which is which is what one should do.
00:15:33.440 --> 00:15:36.240
Um, really milk it for everything that it can offer.
00:15:36.320 --> 00:15:38.159
So the volunteers, the chaplains.
00:15:38.320 --> 00:15:45.120
Um, what made you all so open to actually accepting that help when so many families resist it?
00:15:45.519 --> 00:15:54.639
I think um fortunately, with my work experience working in long-term care and senior living, I had been a part of that.
00:15:54.720 --> 00:16:14.639
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.
00:16:14.879 --> 00:16:23.039
Yeah, 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.
00:16:23.440 --> 00:16:24.639
And that was the main piece.
00:16:25.120 --> 00:16:32.639
She was uh continu like it was probably once a month we were ending up in the hospital and um it was really rough.
00:16:32.799 --> 00:16:36.480
She wasn't able to really um move as well.
00:16:36.639 --> 00:16:41.679
So getting to the hospital, leaving the hospital, it just became so hard on her.
00:16:42.080 --> 00:16:47.120
So once that um kind of went out of the picture, uh she truly thrived.
00:16:47.440 --> 00:16:49.279
Yeah, yeah, absolutely.
00:16:49.519 --> 00:16:55.360
Um, and as we said earlier, like we are in a national caregiver crisis right now.
00:16:55.440 --> 00:16:57.360
Um, and we're gonna be exploring that a lot more.
00:16:57.519 --> 00:17:01.600
And there are millions of people who are providing this unpaid care to loved ones.
00:17:01.840 --> 00:17:03.600
So many of them are young right now.
00:17:04.079 --> 00:17:06.079
Um and you were 29.
00:17:06.240 --> 00:17:08.720
You were, you know, super young doing this work.
00:17:08.880 --> 00:17:13.599
So what do you wish someone had told you when you were 29 and just stepping into that role?
00:17:14.240 --> 00:17:40.799
I 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.
00:17:41.440 --> 00:17:53.680
This 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.
00:17:54.079 --> 00:18:00.880
And that permission opened a door to something that now, years later, shapes Alina's entire practice.
00:18:01.599 --> 00:18:06.640
There's a moment in Alina's story that contains the whole journey.
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It's small, almost unremarkable on the surface, but it's the story she returns to when she talks about what she's learned.
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Her grandmother asked her to rub lotion on her feet.
00:18:26.799 --> 00:18:33.599
And um I remember so many times my grandmother being like, Can you please rub the lotion on my feet?
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But uh 29-year-old Alina was um not going to do that.
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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.
00:18:46.480 --> 00:18:53.359
Um, so I wish somebody said, Um, just get out of your get out of your head and and and and just do it.
00:18:53.519 --> 00:18:54.079
Yeah.
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There 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.
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Why?
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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.
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Years later, Alina teaches others to do exactly what younger Alina couldn't do.
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Compassionate touch, not clinical, not performative, just hands, lotion, and the permission to be present.
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That is what healing touch actually is.
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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.
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Just 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.
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Um, but we could just watch and laugh together.
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There was a time where uh her hair was a mess, and I remember saying, Can I do your hair?
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And we did her hair, and she hadn't let anyone do her hair in a while.
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So we had a moment together, and it had been a long time since um we were able to.
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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.
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This is what grief reaches for.
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Not the perfect care, but the hairstyling moment that happened because she acts.
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The show watched side by side without a second agenda, the hands held when there was nothing else to do.
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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.
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And these are the moments that actually sustain you when the person is gone.
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These are the moments that become the whole story.
00:21:16.799 --> 00:21:25.039
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?
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What would you tell them?
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I 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.
00:21:43.279 --> 00:21:52.880
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.
00:21:52.960 --> 00:22:08.000
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.
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You you want those moments of just being together, laughing, watching a show, holding hands, making a meal together, eating a meal together.
00:22:16.960 --> 00:22:20.960
Um, don't um don't don't rush that.
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This is an invitation to invite witnesses and supporters into the weight, and most importantly, to preserve the moments that matter.
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Because those are the only moments that will actually sustain you when the person you love is gone.
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And you've been in this work for a long time.
00:22:45.839 --> 00:22:50.400
Uh, what do you know now about living that you didn't know before?
00:22:50.720 --> 00:22:52.319
Oh, that's a deep question.
00:22:53.039 --> 00:23:00.400
Um again, I think um death death comes.
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With life comes death, and you can't you can't hide from it.
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If you're hiding from it, then you're not going to truly live.
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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.
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I think that um, because as I said, life with life comes death.
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You're not going to you're not going to outrun it.
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Um, so being okay with the conversations and um and finding um and the support, that I think that's the biggest piece.
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There is something almost defiant in what Alina is saying.
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The choice to look directly at what's coming instead of away from it.
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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.
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And in that peace, something shifts.
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The small moments stop being interruptions and the real work of dying.
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They become the real work.
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Hands on feet, hair being styled, a show watch together, laughter.
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Alina Daly's story is on the surface about caregiving, but it's actually about something deeper.
00:24:26.079 --> 00:24:32.160
It's about what happens when we stop trying to do everything right and we start being present with what is.
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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.
00:24:49.839 --> 00:24:53.839
You can see what a year and a half of that kind of presence does.
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It transforms not just the dying, but the living.
00:24:58.559 --> 00:25:05.599
It cracks open the armor of perfectionism and lets in the possibility of real connection.
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That is the language before words.
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That is what Hospice made possible for Alina.
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In episode 1, Victoria spoke about the gift of attention.
00:25:21.359 --> 00:25:24.960
In episode 2, Alina showed us the power of presence.
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And next, Jennifer Ward invites us into the grief that comes before.
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Jennifer Ward is a social worker and bereavement counselor who talks about anticipatory grief, the journey of grieving before loss.
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And for black families, she's learned there's an extra layer: a fear of the healthcare system, mistrust of the word hospice itself.
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She's learned that before we can offer attention and presence, we sometimes have to first dismantle the stigma and mistrust.
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That's next time, onto no ends.
