Last Day Presents: “Alzheimer’s Changes Everything” (Squeezed Ep 6)

Lemonada It's me, it's me, oh Lord Standing on the need of prayer It's not your mama but your daughter But it's me, oh Lord Standing on the need of prayer It's me, it's me, oh Lord It's me, it's me, oh Lord Standing on the need of prayer Oh, you did good. Yeah. Thanks, I'm sweet. We did real good. Those two people harmonizing with each other are Jessica and her mom, Constance, who goes by the initials CG. Jessica and CG share a love of gospel songs, like that one, Standing in the Need of Prayer. As someone who has heard many versions of this classic gospel hit, let me tell you, Jessica and CG did it justice. But that recording was from five years ago. These days, CG is living with late-stage Alzheimer's and is mostly nonverbal. Good morning, Constance. Today is January 1st, 2023. Ain't that something? This, duh. We gotta fix this hair. Don't call my, my, my, my, my. I'm sorry, but we are gonna fix your hair. If that's okay. Don't bring it up for you. Jessica, who's 36, started caring for her mom full-time a decade ago. Growing up, it was just the two of them, and they've always been really close. So when her mom needed help, Jessica showed up. I see a lot of myself in Jessica. We've been our parents' caretakers for about the same amount of time. We're child-free. We've reshuffled our own priorities and life plans to put our parents in first place. And we've seen what Alzheimer's has taken from them, like their health, independence, and memory. As caregivers thrown into the ring unexpectedly, we quickly learned just how much our identities and purpose shifted, how much they had to shift. But there's one major difference in our stories. I started taking care of my dad in my 40s. Jessica was only in her 20s. Over the years, Jessica has had to make a lot of sacrifices to be there for her mom, including financial ones. And as a young Black woman caring for someone with Alzheimer's, Jessica represents the caregivers who are taking the biggest financial hit in our country. This is Squeezed, and I'm your host, Yvette Nicole Brown. Episode 6, Meet Jessica. I went on my evening walk, and I added another hill. Well, today I just went to go look at it. Like, I walked, and I was like, I ain't going down that. I turned back around and came back. Anyway, move your body. That's Jessica, walking around the neighborhood she grew up in about an hour north of Richmond, Virginia. Jessica has her arm outstretched, phone in hand, recording a video for her Instagram. She does this most days, so her followers, all 35,000 of them, can get a sense of her life as a young, at-home caregiver. I just watered my garden. I got some squash coming in, more peppers. We about to have a boatload of tomatoes, which I'm so excited about. And now I'm going to shower, and then go feed CG. We rocking and rolling. When she's not going live, Jessica's posting photos and videos with her mom, CG. Memories from years ago, when they're singing or joking around together, and more recent posts of a quieter CG, who's now fully dependent on Jessica. I've been following Jessica on Instagram for a while now. She started posting at 26 when she was working a full-time job and supporting her mom. Even through a phone screen, Jessica's easy to connect with, so I couldn't wait to talk to her one-on-one. I feel like I'm about to have a conversation with myself because we've both been long-time caregivers for a parent for 10 years, so I fully understand your journey in a way that most people probably don't. There's one thing that I saw, and I think it was a video that I saw on YouTube about you, the notes. I just wanted to. Oh my God!. show you. My notes. I'm showing Jessica my stack of multicolored note cards. Those cards saved my dad from a lot of confusion in the early stages of his Alzheimer's, and I knew Jessica would be able to relate. People may think that these notes are going to be, like, groundbreaking. They're really mundane. There's things like, you're home and you're safe. Yeah, things like when I was traveling for work, Jessica is back in Texas. You are safe. This is your home. You are okay. Here is your dinner. Please heat up in the microwave for X number of minutes and sit down at your TV tray. Like, literally basic commands. Mine is, I am at the grocery store. You are retired and you have no job to go to. You are safe. Yes! Yeah, you know, it's little things like that. It's just really nice to talk to you because I know that you know what this is. There's a shorthand here. Can you tell me an anecdote about your mom that describes who she is as a person? Tell us about Constance or Connie. C.G. C.G., oh my gosh. My mom was the owner of Hair by Connie in Alexandria, Virginia. She was a leader. She was bold. She was creative. She was traveling around the world for hair shows. My mom was the epitome of love and light and brilliance and taking up space in rooms. And being an only child, I got to see her. I got to see her in her element for a long time, whether it was in the hair salon or in the church. So that's C.G. in a nutshell. You know, it's funny. C.G. sounds a lot like my mom, Fran. My mom has passed on, but my mother was the most vibrant. You know, she entered a room and you knew she was there. So I think that they would have been buddies. I think C.G. and Franny would have hit the streets. What kind of things bring your mom back? Like they say music, they say certain movies. Like my dad is the five heartbeats. I've joked a thousand times. My dad is the five heartbeats. When they get their next residual check, it is going to be huge. And it will be because of Mr. Omar. So what is it for your mom that if you put this song on or you pull this dress out of the closet, she is coming right back and is with you? It's always been singing gospel music. And when she could speak, and even now that she can't speak, you can tell she goes back to a moment or she gets really calm. I would also say, that when she could still see the TV and really engage, listen, you put any old movie with old black actors, she'd be like, ooh, he is fine. She was always flirting with the TV, but you could tell that she was, that's who she was in real life. And then I think my mom has always been a dresser. She's always been someone who has looked good. She was a hairdresser. So her hair was always done. And so, even now the process of washing her hair and braiding her hair and oiling her scalp. When I tell you CG, she just looks brand new, smile on her face, because it takes her back to a moment where she would do that for herself. Yeah. And others, you're doing for her what she did for others, which is also amazing. But pre-caregiving, Jessica was building a life for herself in Dallas, Texas, where she was a high school teacher. By then, CG had sold the hair salon and was working at a hair salon as an educator for kids with special needs. Despite the 1,200 miles between them, Jessica and her mom kept in touch often. They talked about their daily ups and downs and got to know each other's routines by heart. So it was pretty clear to Jessica when things started to shift. I knew something was off when she was no longer working the routine. And so things like getting lost, coming home from school, repeating herself consistently, losing things she would never really lose, like not just keys, but like, where did I put that? You know, where's my bag? Even though she was someone who put her bag in the same place every day, right? And then she also got in a car accident and my mom drove to church multiple times a week. My mom took the same route to church, so I knew that she knew what she was doing, but she completely totaled her car. And I was like, oh no, this is, this is something. Three months later, a doctor confirmed that, CG was likely living early onset Alzheimer's. And I went straight into, well, let's make a plan. I went straight into labeling cabinets. I went straight into giving her a list of things to do to stay busy. So it was like, there was no time in my mind to be sad. There was no time to be like, oh my gosh, it was like confirmation. Cool. I only know about this from Grey's Anatomy, but I do know this is going to get bad. Let me make sure she's set up. And I leaned into my education background and kept it moving. For the first couple of years of her mom's diagnosis, Jessica gave CG workbooks to fill out and a list of to-dos to check off every day. But remember, Jessica was doing most of this remotely from Dallas, nearly three hours away by plane. Soon enough, Jessica realized that those lists and workbooks could only help so much. But then that evolved into, I now needed to call my mom for like every transition of time. And so it's like, I'm calling you to wake you up. Okay, great. I'm gonna call you back to now make sure you have your breakfast. And if I wasn't calling her, she was then calling me because she forgot that I spoke to her. And when I think about it, I don't even know how I focused on work because my head was always here in Virginia. And so it got to a point that I was on a flight, you know, every two weeks. I was on a plane from Dallas staying home for four to six days. And in that short window of time, it was meal prepping, cleaning, figuring out bills, right? Like it was always go, go, go, go, go, go, go, go, go. There was no slow down. Let's just rest in the midst of this. Eventually, Jessica started to face the facts. The status quo was unsustainable. Something had to give. More on that when we come back. 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The New Drug Talk is free, science-backed, and made to help parents start these conversations. Visit thenewdrugtalk.org. Bring it down. There you go. Boom. Go ahead, girl. For the first five years of CG's Alzheimer's, Jessica had her mom on speed dial. She racked up a bunch of frequent flyer miles traveling between Texas and Virginia, and she installed a camera to keep an eye on CG when she wasn't around. In 2019, Jessica even hired an at-home caretaker to stop by three days a week. But it got to the point where not even that was enough. My mom was literally bolting out the door every five to 10 minutes. And she was going across the street to the neighbor's house, sitting in the neighbor's garage, scaring them half to death, like my mom was no longer, it was that and her hygiene. My biggest fear was other people talking about my mom. Yeah. Or thinking that she was unloved and uncared for. Uncared for. Yes. Uncared for. That was like the trigger for me because a lady called me from church. She said, we're concerned about your mom. She kind of smelled. And I was like, that's it? That's it. That's it. And I would always watch her on the camera, but she put a dress on and then pants. And like, she just did not look like Constance. Those moments, in addition to just the exhaustion, were like the straw that broke the camel's back. However, I also had spent the last nine years in Dallas building this life, building this career. I was devastated. I remember sitting at one of my executive coaches' offices and I remember telling her and crying at the time, I can't dream. I can't see beyond this moment. I'm giving up so much. All this is happening to me. I was just like in true victim mode, right? It was just awful. Which, let me say this though, Jessica, that's fair. Please don't be hard on yourself about that I'm thinking about our journeys. I became a caregiver in my forties. You became a caregiver, full-time caregiver in your twenties. That's different. Like I had lived already. I had chased my dreams. I had moved to my city and done everything that I wanted to do. So by the time caring for my dad came into my life, I could say, I got to live a little bit. You did it all at the time when you were supposed to be in the world, we'll say frivolous and fun and carefree. And you literally said, no, I'm going to take care of my mom. So how did you deal in that shift? It truly was a shift because in 2019, I was, oh my goodness, this is awful. Yet it only took me being home for four to six months to realize that it was the best choice I could have ever made. And so I have a deep sense of gratitude for the opportunity to be present and to be proximate to my mom. I got to see my mom. I got to see her. I got to see her. I got to see my mom in a completely different light. And I saw her as Constance and not as her disease that I was trying to create systems for. But like, there were moments when I was resentful. I was like, I didn't choose this. Like I was angry. But then you come home and you see someone who is so genuine and loving and full of joy. And you're like, I can't, you can't be bad at that. You know? Good morning, CG. Good morning. You okay? I'm all right. I'm so lovely. You want to say? Oh, Lord, you're so lovely. I'm still cool as I have already been. Oh, yes, ma'am. Yes. Oh, yes. Especially now in 2024, every day feels like magic time with my mom because literally a year and a half ago, I put on hospice. And when you reach a point of preparing for the end, and then your here, every day is like a gift. Every smile, every laugh, every opportunity to create connection. And I'm not perfect. I don't have all the resources. But what I knew how to do was to show up for my mom. And that looked like moving across the country. Oh, I might cry. Sorry. It's okay, honey. It's okay. That looks like moving across the country and putting, you know, my own opportunities on hold for a moment. It's like, I'm going to do this. I'm going to do this. I recalibrated. Showing up looked like going on family caregiver leave so that when my mom was on hospice, I was fully present. You know, I don't have the answers to why she's losing weight, but I'm a meal prep the heck out of 40 meals and put them in the freezer. Right. And so I think that we underestimate the power of just getting up and trying again and showing up for your person. Right. That matters. That's how you get through the long haul of 10 years. Absolutely. Absolutely. What did you have to give up to care for your mom? What did you have to set aside? The thing that people sometimes get caught up when it's like relationships, but even honestly, like I'm single. I've been doing this by myself for 10 years. Do I wish I had a partner? Yes. And at the same time, this is a season. It's not forever. I think the biggest thing that we don't talk about enough is just the financial hit that I took. And it's a lack of having the financial hit. I think people my age of 35 are building right now. You know, like that's the real drain. That's the real thing that I kind of. have lost jessica was spending between four to six thousand dollars a month to cover her mom's needs she even went into credit card debt in the process which she's still paying off today and by the way debt is common among family caregivers who spend nearly 30 of their income on care costs jessica's savings and steady paychecks covered everything for her mom's day-to-day care things like external catheters or the fidget gloves that help cg with sensory stimulation but about a year ago jessica decided to quit her full-time job to focus exclusively on taking care of cg while my job enabled me to be a great caregiver i also was beyond exhausted right and i knew that i needed to be near my mom without being distracted and multitasking because even though i worked from home i was still unintentionally putting her on the back burner jessica had looked into a long-term care facility for her mom but even with a savings account and a decent paycheck she still couldn't afford it the only way that she would have been able to is if she used up all of her savings only then does medicaid kick in to cover long-term care costs now what kind of logic is that we've heard similar stories like this throughout squeezed and with no systems in place to actually care for the caregiver we're forced to give up things like our jobs which can feel really disempowering so who or what can we look to for support we'll hear more about that after the break hey it's julia louis dreyfus from the wiser than me podcast among other things and i've got a little holiday wisdom for you hosting during the holidays means lots of cooking and that means your trash is going to be full of smelly rotting food yuck so here's the wisdom get a mill food recycler i did we've had ours for years and it has totally transformed our kitchen it's unbelievable how much less waste and less odor there is now plus it's so easy to use you toss in basically any food you don't eat peels 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awkward conversation from six years ago in extraordinary detail so if your brain came with a delete button what would you use it on maybe it's that tough breakup you've analyzed from every possible angle an irrational worry you know doesn't deserve this much attention the conversation with your boss you keep rehearsing in the shower or that one comment someone made that you're still thinking about weeks later we don't always get to choose what sticks around in our heads better help is an online platform that gives you space to talk about what's taking up too much of yours better help is now in network with more than 125 health plans with many co-pays as low as $15 for eligible members visit betterhelp.com cost and coverage may vary hello constance how are you you sleep okay mm-hmm all right let's sit you up girl your hands are chilly oh lord oh lord this is what jessica and cg's morning sounds like most of the time look at me you see my hair yeah it's nice ah just like you used to do at hair by connie fried died and laid to the side constance jessica with her trademark energy and good humor wakes up her mom and helps her sit upright in bed while patiently walking her through each step so give me this arm then i'm gonna take this knee okay you ready let's roll over one two three good job cg is now in stage seven of her alzheimer's which means she's fully bed bound and incontinent and relies on jessica for everything now raise this arm for me we're gonna wash under this arm for what for what i gotta wash underneath your arm that's for what after getting cg ready for the day jessica gets a chance to do the same for herself but she's on her mom's timeline not the other way around i think people often think like oh well she's she's in the bed things must be easier and it's actually like no because she can't do anything and so her mom's timeline is not the other way around and she's like oh well she's in the bed things must be easier and it's actually like no because she can't do anything and so her hydration her like nourishment her ability to like stretch and move is all dependent on me yeah yeah what is your um support system like because in my mind you know we were raised by strong women that are like get it done i'm in year 10 i just started openly asking for help probably in year nine so who do you have in your life that reminds you that you're worthy and tells you to go get some water and some coffee who are those people in your life yeah i would say the first five years i felt very alone because i made it look like everything was okay you're fine yeah it's great um and that's also why i started sharing so much on social media because i was like i need people to see me and to see how hard it is to care for a parent and in letting people in came let me show up for you and send you groceries well you know i can't sit with your mom but i can you know send you this money to pay for a caregiver right like yeah and i'll just say for those listening you know i just assumed family would show up family was probably the most disappointing part of this journey listen ditto ditto sister because family stepping in nowhere to be found stop calling m-i-a m-i-a and we've said it multiple times now i was 26 when i black woman and so a lot of the space the traditional spaces people didn't look like me people weren't in the position of you know trying to build a career like society will have you think the people who become caregivers are 40 plus well-established family white picket fence come on um but that was not my world and you know honestly my greatest support and community happened via social media sharing publicly allowed me to connect with people literally around the world yeah who were doing the exact same thing yeah and i will tell you no one shows up for you like another caregiver you better know it because we know what you need yes we know what you need because it's what we need yes it's the same journey i think before it was always like i don't want to burden people and now i've gotten to the point where it's like i don't know what people can and cannot do if i don't ask if i don't like let them know and so like i'll make my list and then i reach out to people and if they say no okay cool i've asked you but i'm no longer hiding or trying to like sacrifice and bend over backwards to do it all myself girl now i'm just saying everything and then whatever doesn't come to me i figure out please teach me your ways um i have so enjoyed getting to talk to you i knew i first of all i knew that our paths would cross at some point and i knew that we would have this connection whenever we did get to talk so what do you before we go i want you to share with me what else have you done that the spirit of of constance guthrie remains intact i think it starts with the stories that i tell about her the ways in which i talk to her and around her is still uplifting and filled with life and affirmation and she knows cj will smile at you in a heartbeat um and it's important that other people know that even though we're in this late stage there are still ways in which she's thriving you know for her birthday she turns 75 this year um i had a whole three-day extravaganza gospel choir concert photo shoot cookout and some of that was to make sure people still treat her with dignity and respect show up and see her don't talk about her go like hold her hand and sing to her don't like gossip on the phone so all of those moments she feels and she knows that she's deeply loved that's what matters most when she felt most alone jessica found community online she learned to ask for help and was reminded that there is power in numbers through her posts Jessica inspires me and so many others it's important to be in solidarity with one another to share our own stories and find patience and grace when those things feel really far away and something I think we all should scribble down on one of those note cards for ourselves is that just showing up really can be enough sometimes that's all we have the capacity to do we need to remember that more than anything our loved ones just need us to be there and if that's the only thing we can do on any given day that's okay accepting that is a blessing on the tough days but my big question is what's next for Jessica I think actually I know that she has sown too many good seeds and good soil for them not to flower in abundance in the next season of her life do-do-do-do good night sweetheart well it's time to go do-do-do-do good night sweetheart well it's time to go do-do-do-do I hate to leave you but I really must say good night sweetheart good night good night Constance I love you you love me isn't that right yeah that's right girl get some rest my dear okay I'll see you in the morning see you next time next time on squeezed I'm your host Yvette Nicole Brown there's more squeeze with Lemonada premium subscribers get exclusive access to bonus content like previously unheard clips from all our voices in this series subscribe now on apple podcasts squeezed is a Lemonada media original I'm your host Yvette Nicole Brown Crystal Genesis is our senior producer Julia Yort, Tess Novotny, and Hannah Boomershine are our producers Ivan Kurayev is our engineer our theme music is by Andy Kristen's daughter with additional music by APM music Jackie Danziger is our VP of narrative content executive producers are me Yvette Nicole Brown Jessica Cordova Kramer and Stephanie Whittles Wax this show was created in partnership with the Robert Wood Johnson Foundation a leading national philanthropy dedicated to taking bold leaps to transform health in our lifetime and pave the way for the future of health and well-being for all of us and pave the way together to a future where health is no longer a privilege but a right follow Squeezed wherever you get your podcasts or listen ad-free on Amazon Music with your Prime membership Thanks for watching!