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When Jessica Guthrie became a caregiver at age 26, her life turned upside down. Her career, friendships, and love life went on the back burner as she prioritized caring for her mom, who has Alzheimer’s disease. Over nine years of caregiving, she’s faced burnout, medical racism, and the isolation of doing it all alone. But despite the challenges, Jessica finds power in the small moments she still has with her mom, and the community of Black caregivers she’s found on social media.

Learn more about Jessica Guthrie at https://www.jessicacguthrie.com/ and follow her on Instagram @careercaregivingcollide.

This season of Uncared For is presented by the Commonwealth Fund, a nonprofit foundation making grants to promote an equitable, high-performing health care system.

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To follow along with a transcript, go to lemonadamedia.com/show/ shortly after the air date.

Transcripts

SPEAKERS

SuChin Pak, Jessica

Jessica  01:18

It’s hard to have your loved one, the person who raised me slowly evaporate in front of my very eyes. I’m currently caring for my elderly mother. She’s 79 with dementia, and it’s really really tough. Seeing your mother losing the things that are always true about her. That’s a lot for one person to hold.

 

SuChin Pak  01:48

That last voice is Jessica Guthrie a 35 year old caregiver for her mom, Constance, who is living with Alzheimer’s. Like others we’ve heard from this season, Jessica has made many sacrifices in the name of caregiving, including the decision to move back home to care for her mom full time in 2019.

 

Jessica  02:06

I was like, you know, this is a big deal, like I’m leaving my life, I’m leaving my friends, I’m like, starting over. I’m moving back into my childhood bedroom like it was for me, it was huge. Other people couldn’t see it. But it was like, I’m supposed to be grown. At this point, I’m like almost 30 and I’m moving back home like that’s not what was in the vision board and plan A, B or C.

 

SuChin Pak  02:31

After years of caregiving from afar, Jessica packed up her Dallas apartment said goodbye to her friends and throughout her vision boards so to speak. As her mom’s only child making the decision to care for her was simple. Even if it wasn’t easy.

 

Jessica  02:45

I just thought my road was crumbling. But I knew that it was my mom. Therefore you do whatever you need to do to, you know, look out for your mom.

 

SuChin Pak  02:55

This is Uncared For, I’m your host SuChin Pak.

 

SuChin Pak  03:04

I think for many of us, we know that we will need to become caregivers for our parents at some point in life. But it can feel far off something that will happen down the line. It’s easy to push aside the small signs like oh, my mom seems more anxious than normal, maybe a little more forgetful until you have to face it. This past year, my mom was diagnosed with dementia, and it’s shifted the caregiving timeline for all of us. It feels like now we’re racing against a clock that’s on hyperspeed. And as any caregiver knows, you need time to adjust to a new reality. But often time isn’t a luxury you get. Our guest today has had to adjust to the reality of her mom’s Alzheimer’s diagnosis on an even earlier timeline, becoming a caregiver at an age when most people are still figuring out their careers, their friendships and what it means to be an adult. On top of that, Jessica has to fight for visibility as a young black caregiver. She’s become an expert on caregiving for a loved one with Alzheimer’s. It would take some time before her mom got a diagnosis. But the signs were there early on. So let’s talk about when you first started to realize hmm, there’s something not quite right with my mom.

 

Jessica  04:27

So around 2014, we started noticing my mom was just like forgetting things. But she would be like, oh, I was just testing you or oh, I forgot, and of course I’m asking you again. But she was kind of brushed it off. My mom was also an educator. And so she was still driving to school doing all the things. But I could just tell that like something was off because her normal routines were starting to be interrupted or disrupted by like her forgetting, you know, wherever her keys are like what was she going to do or who was she supposed to talk to? Fast forward, she took her last trip to go visit her brother in Chicago with a trip she takes every summer. She navigates the train, navigates the airport knows how to at the time to get a cab pre Uber, right like to get a cab and get to her get to his house. And I’ll never forget, I remember she said, Jessica, I’m worried, can you type out the steps for me? So that I can get from point A to point B knows, like, oh, yeah, sure, you know. So I stepped I type out the steps, I gave her everything. And then I was in Dallas, Texas, and she she called me at the train station, Jessica, I don’t know where to go. And I remember being on the phone with her the entire way until she got to the airport. And then I called my uncle and said, you’re gonna get to the airport and meet her there. Long story short, that was the first time where a routine that she had done every year had felt so comfortable that she was a world traveler was now that she was like very afraid of and didn’t know how to navigate her way. And that’s when we took the route of getting a diagnosis and meeting with a neurologist and taking all the tests to make sure like what’s really happening what is causing this, and that’s when I found out, it is likely early onset Alzheimer’s disease as she was only 66 at the time.

 

SuChin Pak  06:10

66 that is young, especially when you consider that Alzheimer’s usually presents for a few years before diagnosis. I want to press pause though for a moment because so often we define people by their diagnoses, and don’t get me wrong, being diagnosed with early onset Alzheimer’s is a defining moment. But Jessica’s mom was of course, so much more than that. Talking to Jessica, I got an image of Constance or CG her nickname as a vibrant worldly woman, a force to be reckoned with. She owned a hair salon for 17 years in Alexandria, Virginia, and it was her pride and joy. That is until Jessica came along.

 

Jessica  06:51

My mom is someone who I would describe as just truly selfless and putting others before herself. Hence why she sold her business when she had me I was her 39 year old surprise. But she sold her business and moved to suburban Virginia to ensure that I had the best education growing up, right, she sacrificed so much to make sure that I got what I needed to thrive. And so you know, when I think about our relationship, you know, it’s not the material things. It’s the it’s the time, it’s the being present, it’s being proximate, and knowing that she would always be there so much so that when I got into college, I remember getting my acceptance letter to Dartmouth, and like, I’m excited just like jumping around. And she wasn’t excited. And I was like, why? Why aren’t you happy? You know, […] all the things she was like, because you’re leaving me. And I that’s when I realized, like, oh, I was my mom’s everything.

 

SuChin Pak  07:48

I love that, I mean, I just I had parents who were always in the restaurant business, and the proximity is really interesting. We didn’t have much, but we were always together whether we want it to be or not. And I think that that creates a kind of relationship good or bad. That’s just like, really, really close. You say you went away to college. And and I know that you lived apart from your mom during that time. So I want to hear about your life right before you had to become a full time caregiver. What was your life like?

 

Jessica  08:26

Absolutely, so I graduated Dartmouth in 2010, and flew to Dallas, Texas to become a teacher to become a high school teacher. And living in Dallas was a great first step for me, because it allowed me to figure out who I was without my mom. But also like, what did it mean to have my first apartment? I bought my first car, right? So it was very much like growing up and doing so many new things on my own that I never had the opportunity to do before.

 

SuChin Pak  08:57

Can you take me back to that moment after you learned your mom’s diagnosis? Like what was running through your head?

 

Jessica  09:03

I think for me, two things happened. One, I was like, oh, no, I’m not prepared to help to take care of my mom. I like I I just really started working, actually, I know the first thing I said is how am I supposed to pay for this? It’s like, that’s the first thing I thought of right? But then the second thing was, okay, you live in Dallas, she’s in Virginia. That’s where your job is at. Let’s get some systems in place, like I hit the ground running, like I didn’t give myself the space to feel the grief that I eventually learned that that’s what it was I just like no, you get into go mode, right? You create solutions. And I went into this space of protecting and preserving her dignity, because she was Constance Guthrie. She was bold. She was like people knew her as count, you know what I mean? Like, and so because she was trying to hide it as long as possible. It almost became my responsibility to also help her hide what was happening, right? My mom still went to work until it got to the point where her principal said, we’re concerned, she can no longer be here. But that was still a number of months before that happened. And in hindsight, like Jessica, why didn’t you pause to just be like, this is a moment. This is now happening, you need to adjust, but no, I think if I, if I think about my relationship with my mom all these years, you happen to the mode to protect that and protect the image of her. That’s what I did.

 

SuChin Pak  10:33

Well, that’s what was important to her. That’s what she wanted you to do. And I also think that like, when you go through such a huge transformation, it takes a while to process, adjust and figure out where are the edges, and then they keep changing. And so you’re constantly adjusting. So I think, for you like that adjustment period, you know, was necessary and natural. I want to talk about some of these systems, because I, I saw some of it, and it just blew my mind how you and your mother created these systems while you were still in Dallas, and she was in Virginia, and she was dealing with some of these symptoms. Can you talk about some of that?

 

Jessica  11:21

So I wanted to create as much independence as possible. Because just because you have a diagnosis or like a dementia diagnosis doesn’t mean that all your independence goes away immediately. And so a lot of my systems in the early time or the early years were, how do I give my mom what she needs to still have agency to complete and feel proud of what she’s doing, and to do it on her own. And so that was meals, that was activities. That was also medications, right? Like there was a full table of the medications she takes when and letting me know when she does them. Everything from also her time outside the ways in which she was in the garden in the yard. This is pre wandering, so I’ve trusted her outside. And so yeah, every system from labeling of the cabinets, so that she knew where to put things after she washed the dishes.

 

SuChin Pak  12:12

Wait, what what do you mean labeling of the cabinet?

 

Jessica  12:16

Yeah, yeah, so my mom would get confused about where to put a cup after she washed it. And I would come home and said cup would be in the refrigerator, or would be like in a drawer where there’s pots and pans. And it’s like, okay, she’s clearly wanting to help clean. She clearly wants to help put stuff away. But she’s confused about where things go. And so I took orange, and they’re still in the cabinets till this day, orange index cards and labeled every cabinet like what and what was in it. So this is cups, this is spices, this is pots and pans, so that she could like actually just open things up and put things in the right place and or find what she needed those and I remember my mom saying, Jessica, you don’t have to do this, but this is helping me, isn’t it? And it’s like, yeah, it is, you know, and so she began to realize that like all of the labeling of things, wasn’t to like infantilize her or make her feel like she couldn’t do it, it was to help her feel as confident as possible.

 

SuChin Pak  13:20

I’ve been thinking about these systems Jessica put in place for her mom. Of course, care often takes the form of doctor’s visits, medication management and cooking meals. But it also looks like an orange index card on a cabinet labeled pots and pans. When we come back, we’ll turn the spotlight on Alzheimer’s disease, including how medical racism plays a role in who is diagnosed and when something Jessica has experienced firsthand caring for her mom.

 

SuChin Pak  13:50

Oh my goodness, I felt my heart rate start to go up as you introduce this topic.

 

SuChin Pak  15:22

That’s after this break.

 

SuChin Pak  15:34

When Jessica’s mom Constance was diagnosed with Alzheimer’s, she joined the nearly 7 million other Americans living with the disease. It’s the fifth leading cause of death among people 65 years and older. But even though it’s widespread in this country, Americans are not affected equally. For black women over 65 like Constance, the chances of developing Alzheimer’s are far greater. The disparities are stark, black Americans are 40% more likely to develop Alzheimer’s than white Americans. And despite the prevalence in this population, they are actually less likely to be diagnosed early on and often have to present with more severe symptoms to get the care they need. And it’s not just Alzheimer’s, by the way, discrimination and racism are major issues in our healthcare system. According to one study, nearly half of all health care workers surveyed witnessed discrimination against patients. As her mom’s advocate, Jessica has seen this play out firsthand.

 

Jessica  16:36

You know, it’s the thing that grinds my gears the most, it’s the knowing that Alzheimer’s disease especially disproportionately impacts the black community. Yet, when you think about representation in clinical trials, representation and brochures, pamphlets, representation in like the social media in the media in general, you don’t see our stories elevated. And you would think, oh, yeah, that’s that’s all white person’s disease. And you’re like, actually, no, it’s like a yes and that’s one of the reasons why I’ve been so committed to sharing my story so publicly, so that other people can see like, oh, there are black people, not only like navigating and living this, but they’re doing it well, and there’s joy, and there’s excitement and energy. And it’s not, because the narrative, and I’ll tell you this, the narrative is also poor black people, they don’t have resources in their communities. They have poor diets, high cholesterol, high blood pressure, these are all the reasons why they have Alzheimer’s, it’s like, okay, there might be some correlations. But I think the thing that frustrates me the most is how quickly people generalize what’s happening to the black community around this disease without giving the space to say, where might there be bias in the system? Where have we failed in terms of educating and creating access for people to understand this disease early enough? Why haven’t we started thinking about, you know, working with medical professionals so that when a black patient comes to you with concerns around, you know, memory loss, they don’t get written off as just old age memory loss, but they they get the opportunity to get an early diagnosis to that’s not happening, right? How do we actually start talking about it earlier? How do we help remove some of the stigmas? How do we help remove some of your assumptions about what it is and isn’t? So you can be equipped to really attack and address this, when you start to see things happen? Versus what I often see is like sweep under the rug, put them to the side, you know, I’ll pause there, but I.

 

SuChin Pak  18:40

Yeah, you’ve spoken about even going to Alzheimer’s, caregiver support groups, and how even in those kinds of places, you’re surprised that this experience continues to follow you there, which I find. I mean, I’m laughing because I’m just, I’m also indignant, and it makes my heart, you know, race to my throat. Can you talk about these kinds of personal experiences to really paint the picture for someone who A has those experiences, or B is like, really?

 

Jessica  19:15

So I was 26 when I started this journey, and you know, when people like people are trying to be helpful, they’ll say, well, have you gone to this support group? Here’s the support groups, or they’ll be like, you know, go to the Alzheimer’s Association. Here’s the support groups. And you know, you go and you realize the people in these groups are older white people who are more established in their lives. They’ve already got the family, the picket fence, the careers and they have the ability to either retire early, or put things on hold, or they have the spouse that they can, like, continue to, you know, finance while they while I take care and you’re just like, oh, wait, I this is not my life. I don’t see myself here. And this is actually more isolating, then before I came to this space, and so it’s no knock on the support groups, they’re really, really helpful. But when you don’t see yourself, when there’s people who aren’t talking through or have been in your shoes, it makes it even more isolating. Because what I really needed was for people to say like, oh, the the insomnia that you’re feeling, the sadness that you’re feeling, right, like the the sense of like fear, all of that grief, Jessica. And, you know, this is what it’s like showing up as for you, but I didn’t, I didn’t have that support group to share with to share that with me early on, which made it really difficult, which I think is also what led me to social media to find other young black people. As soon as I started sharing publicly, it was like, oh, there’s 1000s of us, which is problematic, but also like, whoa, there’s 1000s of.

 

SuChin Pak  20:52

My people, these are my people, this is my support group.

 

Jessica  20:55

Yes. And, yes, I found black women, but I also found people from all around the world from all different backgrounds, and you start to realize, Alzheimer’s disease does not discriminate. And the experience of a caregiver is the experience of a caregiver, right. And that has been so helpful in finding connections and empathy and understanding that I didn’t have from friend groups, colleagues, people that I was around.

 

SuChin Pak  21:25

Let’s talk about that a little bit more, because you eventually did have to leave friends, colleagues, and all of that and move back home. Do you remember making that decision, or the day you move back in? What was going through your mind where were you emotionally and just in that headspace?

 

Jessica  21:49

Up until then I was traveling back and forth. And so I would, you know, fly home to Virginia, and I would spend maybe five days at home and then two weeks back in Dallas and back on a plane back to Virginia. And so I was hopping on flights at 6am to be at 9:30 meetings in Dallas, I was burning the candle at both ends. And I, my manager, my boss at the time was like, why don’t you just spend more time at home? He was like, you’re highly competent, where you can keep your job and work virtually. I needed the permission to do it, right. I didn’t know that was possible. This was March 2019. That move back while it felt so hard, was probably the best thing I could have ever done for my relationship with my mom, spending time with her while she was still active and engaged. Oh, I’m sorry. The things we were able to do. That was the power of moving back. And so I share this because I think some especially for young people listening, or even if you’re not young, it is a humongous sacrifice to say yes, to caring for a parent and putting your own stuff on hold whatever the stuff might be. But you cannot get the moments back. And I’m so grateful that I I took the leap because I’ve got all these memories ingrained. I can no longer make those with her anymore, you know. Thanks for holding space for my tears.

 

SuChin Pak  23:31

I don’t know if they’re yours or mine or what’s happening here. I’m trying to get myself back on track too because yeah, it’s really, really nice that you had that time with her and that, that you get to hold that now. With Jessica saying about moving back with her mom, it’s a good reminder that this work isn’t all pain and sacrifice. You can still build beautiful memories together even after an Alzheimer’s diagnosis. There’s power in that time together, not just loss. But on top of all this is another looming factor the finances, like Jessica said earlier, the very first question that popped into her head after her mom’s diagnosis was how am I going to pay for all of this? That’s when we come back.

 

SuChin Pak  25:18

I want to talk a little bit about the financial implications. I mean, because I want to make sure I get to this, I want to talk about how you’re managing, what are the biggest costs. So those are two questions in the third one, because I’m just gonna let you go is like what’s changed now that you’ve also left your job? Like, how are you managing financially?

 

Jessica  26:38

So you know, I told you, as soon as I found out that we got a diagnosis, the first thing I said is, how am I going to pay for this, because at the time, you know, my mom owned her own business. And then she worked in the education system and the local school system. And so by all accounts, she was a hard working person but didn’t make a significant amount of money, right. But my mom made too much money to qualify for Medicaid, right. And so literally everything has come out of pocket all these years, I knew that my first responsibly was like, how do I make sure we keep paying her mortgage? Right? Like, how do I make sure we keep this house like that was the first stressor that I was thinking through. Long story short, she can cover her mortgage, but all the other things that pop up, whether it’s medical bills, clothing, food, things that happen to the house, all of that came from Jessica, working a nonprofit job right on top of flight home. And then my own expenses. Fast forward a few years, you know, my mom reaches the wandering stage where she is now bolting out the door. And at the time, she was going directly to the neighbor’s house. And at some point, my neighbor just could not handle it. And I was like, I now need external help. But when I first started this, I was using a care agency, I could only afford three days a week for four hours at a time. And that was still bringing me to you know, 4000 plus dollars a month, right?

 

SuChin Pak  28:08

On top of everything else.

 

Jessica  28:09

Again, out of pocket, right, right. And so what’s happening, credit card bills, you run it up debt, I was easily spending close to $6,000 a month on care. And so how did I do it? I made a lot of sacrifices. I didn’t go on trips, I couldn’t do the things that my peers were doing. I wasn’t making investments, right? Like my friends were about stock portfolios on no investment portfolios, I don’t have that, right. And so what did you, what do you lose, you lose both the building of your own financial security, all the while spending at the same time, right? And then fast forward to now 2023 I left my job at the end of May. Because my mom is on the late stage of Alzheimer’s disease. I made the choice to be home, because we don’t have the financial resources to put my mother in a memory care facility or community. But even if I did, that’s $9,000 a month, right? So who has that? And I’ll never forget meeting with the Medicaid specialist at the local area agency on aging. And I said so why don’t families do right if you don’t qualify for these supports you work all your life? What do families do? Which they oh well, they just exhaust their resources. Have you thought about selling your mother’s home? And I said absolutely not. Because she built that home for me, right? And so I’ve really honestly, the universe whatever you believe in has truly been looking out for me to make it work month by month is where I’m at at this point to be honest.

 

SuChin Pak  29:41

I was stunned when Jessica was laying out all of the numbers here $6,000 out of pocket every month for care. Let me say that again. $6,000 every month, not to mention a Medicaid specialist suggesting she sell her mom’s home which I wish I could say was outrageous but from what I’ve learned this season, it’s not. If you have too much money, like in Constance’s case, you won’t qualify for Medicaid. And unfortunately, there are a lot of instances of people having to spend down their life savings or selling assets in order to qualify. Medicaid could even come after your home once you’ve passed away. As a result, we have a whole swath of Americans caught up in the middle with too much money to qualify for Medicaid, but not enough to cover those essential needs out of pocket. What about Medicare you ask? Well, many in home health services aren’t covered by the program. Medicaid expansion could help support these families as we’re increasing the in home services covered by Medicare. Medicare Advantage plans could also offer more comprehensive supplemental benefits such as respite and adult daycare. But even these changes won’t have real transformative power until we can make the systems easier to navigate for caregivers like Jessica, because it should not be this confusing.

 

Jessica  31:06

Listen, I’ve got multiple degrees, and it’s confusing. Like I don’t understand the systems, okay. So I had to go talk with someone to break it down for me. And my mother only has her retirement from the school system, and then her Social Security. And the woman looked at me straight face and she said your mother makes too much money. And I said, What do you mean, she? She’s barely just paying our mortgage, right? Like, what are you read? And it’s like, your mother is like literally, like maybe $100 over the cut off. And I said, so that then means that she doesn’t qualify. And at the time? Yes, that’s exactly what it means. My mother now though, given the state that she’s in, she actually qualifies what I understand for like long term care assistants, and you know, even all its confusion, they do want to keep your loved one at home, like they in the end of the day, they want your your person to stay at home as long as possible. But to be completely honest, the system is so confusing. And so unclear, I don’t I almost said, I don’t even want to do the paperwork, I’ll just continue sacrificing because I, I don’t have the energy to navigate that process.

 

SuChin Pak  32:21

Yeah, knowing that this is a this is sort of the final stage of the disease and your time with your mom and you walked away from your job. Knowing that listen, I want to spend this time. Like, I want to know that I was here for her that my presence was felt. I think that that’s so powerful. And it kind of got me thinking about, we talked about finances and the implications of that, but just the trade offs in general of caregiving. And I want to talk a little bit about that, about what you have traded off to, so to speak, what you see caregivers trading off, that isn’t just about financial. But it’s also about all this other stuff we’ve been talking about.

 

Jessica  33:07

I didn’t realize that caregiving would be as lonely as it has been, because the people that I expected to show up for us actually ran the other way. My mother is one of 10 siblings. And I was commuting from Dallas, Texas to Virginia. On my own, right, she has two siblings who live in Virginia, right. And so that give that paints the picture of my experiences and also not unique but how quickly family stops communicating stops. They stop engaging. You give up friendships, right, like or friendships, they evolve, right? This sense of, you know, friends that stopped inviting me to things they stopped calling, they stopped, like checking in because I mean, you know, isn’t not your journey, this is a long time. And I think that they always thought like, oh, well, she’s too busy. Oh, she won’t have the time or this space. But it’s actually like I would kill to have like a gossip session about reality TV, you know what I mean? Like, I would love to not talk about caregiving. So there’s, there’s that that happens. I think about you know, relationships, I am single I am 35 I have no kids. And you know, I can say that I’m, I am fine with that for the most part. Because I know that I have I’ve we don’t have that much time left. But at the same time, I’m 35 and single my mom had me at 39 like I think about it all the time. I don’t want kids after 39, because I know what my trajectory is in terms of this potentially being a disease that I will be living with right like so that weighs heavy on my mind. And so I also just think beyond the job and beyond like the career I do think there is a kind of like reshaping of what success looks like. What does you know? Contribution? Like, what is your contribution look like? Because you I grew up, you know how to get chiefing highly competitive, you do all these things. But that’s completely shifted for me. And so, yeah, the sacrifices are great. But what I will offer is that in the midst of all of those sacrifices, so many people have shown up to wrap their arms around me in ways I didn’t expect. The friends like people that were acquaintances became my close friends, right, like groceries, you know, sending money, right, like, coming to sit and be with my mom, complete strangers on the internet, filling out Amazon wishlist. Right? Like, you realize that like, community and family changes when you’re a caregiver. And it’s often people who are not blood who have not known you for years. It’s the people who understand the realities of your experience that show up for you in droves.

 

SuChin Pak  36:10

Yeah. What advice would you give knowing what you know, now, for others who find themselves in a in a similar situation as yours, which is young, alone? You know, being a caregiver, all of the above? What would you say?

 

Jessica  36:28

The things that come to mind, the first is a diagnosis. So whatever illness you’re navigating does not mean the end tomorrow, you still have time with your person. And to make the most of the moments that you have, and to commit yourself to seeing joy and finding joy, even in the mundane. Because it’s the it’s the creation of memories and finding the joy even in your routine habits that will sustain you when things get really hard. I think the second thing is, do not be afraid to use your voice and your power, especially if you are a younger caregiver, navigating people systems policies, right like this, this journey is already hard as your person sick, right? It’s 10 times harder, we think about all the barriers that get put in the way because of just the systems we have to work within. And I think society has taught you to just kind of like trust, trust the doctor, trust the system, it’ll be okay. But the advice I have for you is to blow it all up, disrupt the system to speak up to advocate because you are your person’s eyes, ears, their mouth. And if it wasn’t for me speaking up for my mom in many different ways, we wouldn’t she still she wouldn’t be here today, right? And so you have a responsibility to not just care, but to advocate for your person because no one else is going to.

 

SuChin Pak  38:08

I saw a clip of you singing to your mom. And I think for those that may not know, singing is such a vital part of connecting and healing in the dementia space. I’m just learning about this myself, especially if a person had a lot of music in their life. Can you talk about that moment, and those moments when you can still in there, connect with your mom.

 

Jessica  38:41

My mom has been a musical person gospel music is I you know, if you ever came to my house growing up, my mom would have like these records and 45 playing of like old gospel hymns. You know, my mom was the director of the gospel choir at church. And so singing and gospel music is the way to connect with my mom. And so you know, every day we have sing along time, and for the longest time, CG would sing with me or she’d be clapping her hands or it’d be like a back and forth. And now she doesn’t sing with me. However, what do I see? I see her eyes locked on mine. I see her holding my hand tightly. I can see the smile on her face. And that lets me know that. She feels it. She hears me and she’s so connected. And it is those moments that like remind me, she’s absolutely still here. She hears me and she she she’s loving what’s happening and that is what makes me keep going.

 

SuChin Pak  39:58

This video of Jessica reminds me I have the small moments I still have with my mom today just being in the kitchen cooking something we both love to eat. My mom spent her whole life in kitchens at home and at work, and now that’s where I think we’re both the most at ease. When I watched Jessica leaning over her mom’s bed singing, I understand how powerful these moments can be.

 

CREDITS  40:40

There’s more Uncared For with Lemonada Premium. Subscribers get exclusive access to bonus content, like unaired interview clips from caregivers across the country. Subscribe now in Apple podcasts. Uncared For is a production of Lemonada Media. I’m your host SuChin Pak, Muna Danish is our supervising producer, Lisa Phu and Hannah Boomershine our producers. Our mix is by Ivan Kuraev. Music is by Andrea Kristinsdóttir. Our associate producer is […]. Jackie Danziger is our VP of narrative content. Executive Producers are Jessica Cordova Kramer and Stephanie Whittles Wachs. This season of Uncared For is presented by the Commonwealth Fund, a nonprofit foundation making grants to promote an equitable, high performing health care system. Help others find our show by leaving us a rating and writing a review. You can follow me on Instagram at @SuChinPak and Lemonada @LemonadaMedia across all social platforms. Follow Uncared For wherever you get your podcasts and listen ad free on Amazon music with your Prime membership. Thanks so much for listening, see you next week.