CHRISTINA KEYS: Turning a Mess into a Powerful Message

If you don't know  the preeminent caregiving champion, Christina Keys, you're in for a valuable treat! Christina was living her best life, enjoying a successful career, she was financially and spiritually healthy and happy -  when in 2013 her beloved mother suffered a devastating stroke and was given a 1% chance to live. In a blink of an eye Christina went from care-free career woman to full-time caregiver. With Christina’s dogged and loving support, her mother survived - but after 4 years Christina was bankrupt, financially, emotionally, mentally, and physically. And suddenly she was faced with a diagnosis of her own. Her body was shutting down from the stress and she was given 6 months to live. She knew she had to completely change her life…and she did. But she decided to not only transform her own life, but to help change the lives of other caregivers.  
Christina’s mission to make sure caregivers everywhere are seen, heard valued and appreciated and are never alone through her local work with Loving Them Forward , the Non Profit she founded, and the national work she is doing as the Director of Community Growth at Caregiving.com.  We can’t wait for you to hear more about her remarkable transformation and journey!
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Transcript

Don Priess: 0:00

When the world has gotcha down, and Alzheimer's sucks. It's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is we continue to fight with the most powerful tool in our arsenal. Love. This is love conquers all is a real and really positive podcast that takes a deep dive into everything. Alzheimer's, The Good, the Bad, and everything in between. And now, here are your hosts Susie singer, Carter, and me, Don Priess

Susie Singer Carter: 0:40

Hi, everybody, I'm Susie singer Carter.

Don Priess: 0:42

And I'm Don Priess. And this is love conquers all calls. Hello, Susan.

Susie Singer Carter: 0:47

Hi, Donald. How you doing?

Don Priess: 0:49

I'm I'm swell. Terrific as they say in the business. But, boy, you've been off to a kick start on this. This new year. Right? You can get me started.

Susie Singer Carter: 1:02

Started. The name of our next show is Don't get me started. How do you feel today? Don't get me started.

Don Priess: 1:11

Don't get me started.

Susie Singer Carter: 1:15

I want to talk about their illnesses. Right? Like we all do.

Don Priess: 1:20

It's the most fun, most fun thing ever.I was telling you it's tradition when I go golfing. You know, the first thing we do before we tee off is everyone list their ailments. That's your first candidasa Get it out. Yep.

Susie Singer Carter: 1:34

Now we know. And everybody's is worse than their than

Don Priess: 1:37

yours. Absolutely. In fact, nobody even listens to you. No one even listens. I

Susie Singer Carter: 1:41

can't wait to say there's right. Yeah,

Don Priess: 1:45

absolutely. I don't even know what you've had. And I've been with you this whole time. So you know, I'm not paying you rate.

Susie Singer Carter: 1:54

Did I mention I have really, really contagious pinkeye? Yes.

Don Priess: 1:59

Over and over and over again.

Susie Singer Carter: 2:02

Don't get pinkeye you guys it's awful. Like Rocky. Yeah, like literally I had my cheeks were out like this. Like, who knew it was so invasive. Let's just talk about getting older, like how everything affects us so badly. Like, like, my little granddaughter got. She's the one that gave it to me. She's you know, they're in a petri dish. Let's talk about kids in the petri dish. I've gotten everything the norovirus from them, which is that's, that's real fun. That's a party. That's a party in the bathroom. And then I got RSV. And then I got pinkeye and the pink guy you know, eaten cheese for she got over it, like in a day. I'm going on for weeks now. Like I'm still waking up with red eyes and gunk. Delicious. Anywho. So but you know what? Here we are, we're live. Jacques would we're having we're having great conversation, we're making a great documentary. No Country for Old people is coming in for the, you know, we're coming in at the finish line. So that's exciting. And so we'll keep you posted on that. But yeah, we have a great guests, which I can't believe we haven't had on before this because we've been like, like, like parallel colleagues for the past. I think like, Is it four years now? Right? Three years? We're gonna have four years. Oh, yeah. And we also our journeys, although they're different. But of course, caregivers journeys, at the end of the day, we have so much in common, right. And, but we both lost our Darlene mommies in 2022 and, and we're going through that, you know, post caregiving weird space, and also missing our mamas like crazy, and trying to figure out how we live the rest of our lives. You know, without that without our without our greatest fans, you know, and the people we love so much. So that's, we'll talk about that, too. So anyway, without further ado, Don, why don't you do a delightful introduction.

Don Priess: 4:17

And so I will. Christina keys was living her best life, enjoying a successful career. She was financially and spiritually healthy and happy. When in 2013, her beloved mother suffered a devastating stroke and was given a 1% chance to live. In a blink of an eye Christina went from carefree career woman to full time caregiver. With Christina's dog and loving support her mother survived. But after four years, Christina was bankrupt financially, emotionally, mentally and physically. And suddenly she was faced with a diagnosis of her own. Her body was shutting down from the stress and she was given six months to live. She knew she had to completely change her life. And she did. But she decided not to only transform her own life, but to help other caregivers change theirs to Christina Keyes is now a sought after public speaker, community builder, storyteller change agent, collective visionary, and the Director of Community growth@caregiving.com. Her mission is to make sure caregivers everywhere are seen, heard, valued, appreciated, and are never alone. And we can't wait to hear more about her remarkable transformation and journey. So let's say hello to Christina Keyes. Hello, Christina.

Christina Keys: 5:35

Hi, guys, how are you?

Susie Singer Carter: 5:36

Hello my sister!

Christina Keys: 5:39

Excited to be here today and to be able to talk with y'all.

Susie Singer Carter: 5:42

Yeah. All right, we're right back. atcha Yeah, we were were we like I said before, when the intro like we've just been sort of parallel and that you've done, you've done incredible things in this space of caregiving, you know, which is, which is daunting, because you think you're you're you must be, you must be completely exhausted, and you know, at the end of your rope, and yet you here you are resilient and picking yourself back up and just throwing yourself back into the community and giving it all you got. So I'm really interested in that. But you know, why don't why don't for people that don't know you? I don't know who that would be. But for the people that don't know, you, give us a little background, a little more detail than what Don was saying, you know, in terms of your caregiving journey, up until up until 2022. Absolutely.

Christina Keys: 6:38

Well, as Don mentioned, mom had a stroke in 2013. Until then, I had built a successful career in tech. And I loved it. You know, I was playing on three softball teams, I was doing amazing things at a long term partner, and life was good. And mom had a stroke. I remember that morning, she had called me we were talking on the phone, everything seemed fine. I was gonna call her back later that day, and I was actually in the grocery store shopping with my personal trainer, right? And do right, and you know, cuz I could afford things like a personal trainer back then. Right. And so I got this call from the hospital saying my mother had had a stroke, and they weren't expecting her live. And I got in my car, and I drove three hours up there. And I walked in, and, you know, she's hooked up to all this life support. And, you know, they gave her 1% chance to live for that first 30 days and, and I've lived in that hospital with her for almost four months. So when I say lived in the hospital, it was out of a suitcase, in that hospital chair that so many caregivers are used to. I went home once a week to take a shower. I smelt glorious, right. And, and that first 30 days, it was like, you know, from minute to minute, we didn't know she was going to live. And I had never, you know, I don't have children. So I hadn't been in a place of caring for anybody other than my cats and dogs before. But here I have my mom and I'm about to lose her. I don't know what's going to happen. And so when I was in that hospital, I kept asking, you know, like, what do I do? How do I care for her because she's paralyzed from the neck down, right? She's having seizures, she's got cognitive issues, memory issues. I had a teacher at a talk. They were trying to teach her with like the stick figure flashcards and I'm like, no love is going to be the motivator. So I printed off I think it was like 300 pictures of our life and had somebody pick them up. And I made them into flashcards. And that's how she learned to talk. And I will do out of that hospital. And they gave me a list of in home care facilities and also like senior living communities and in home care people. They didn't tell me wasn't covered by insurance. They didn't tell me what in home care actually was. And I'm wheeling around the hospital thinking we're set mom had been a manufacturing engineer. I was in tech. We're fine. We both have 401 K's. She's got great insurance. I will err out of the hospital, find out. None of that matters. Right. And we are all of a sudden, you know, a year and a half later, we've gone through both of our 401 K's. You know, we went from upper middle class to poverty level, you know, within a year and a half I'm standing in line at food banks, you know, and and just paying for my mom's care, right. You know, I had to learn how to hire family caregivers so I could work. I remember in my Facebook memories. One of them came up and I didn't even know what a caregiver was I my Facebook memory said my first post was, does anybody know if they have anything like babysitters before adults? I didn't even know it was called the caregiver. Like that's how I was with all this. And here I was entrusted to care for my mother. Right? And so we did this journey along the way and we learned along the way me and mom and we kind of developed this thing of teen mom, you know when things were hard and um If things change, things would get good and things would get bad. And the dynamics got different, you know, I think, you know, me becoming that mom role was very hard for her. And it was also very hard for me, you know, and the financial, you know, it's funny because I was talking to somebody the other day who just gone through losing their partner, right? And, and she went from two incomes to one income, I'm like, hey, I can teach you how to live in poverty and survive and grow, you know, because I've learned from caregiving, you know, and, and I gets better. And so, yeah, I think that whole journey really taught me that, first of all, finding out that there was no resources in my town that there was nobody to turn to. I thought I was supposed to ask the doctors, I mean, just like any of us, like, we thought, we were going to the hospital, we're seeing all these doctors, like, why wouldn't they know? Why wouldn't they be the experts? You know, we don't know. Right? And so it's interesting when I did have to leave my career. I and I had to change careers, and winding up in the senior and retirement industry, and finding all of these resources, and all this support in my own town was like, Holy crap. Like, I didn't even know this was here. You know, would you? And yeah, exactly. And you know that I remember that last day at my job I had given, you know, it was 2017, I started the care journey with my mom, march 16 2013, at 3:42pm. And February of 2017, is when I left my job. And I remember, I'd given like a month's notice. And that last day, I was just milking because I didn't want to leave, you know, that was like, what was that going to mean? For me who what was my identity, I wasn't going to be the career woman. I wasn't, I was just going to be the caregiver. And I remember I'm sitting there and everybody got off at five. And it's like, 6pm, and I'm, like, frantically putting information into Salesforce. And here comes the CEO and all the managers, they're like, Christina, what are you doing here, and I'm like, Oh, I just got to put this information in there. Like you can go. And, you know, I didn't want to leave, you know, that was like the longest elevator ride of my life. Because I knew as soon as those elevator doors opened, I was no longer like, the Christina, the career woman or the Christina, anything. I was just Christina, the last caregiver, once those doors open, right. And so, um, you know, I went to that doctor's appointment with my insurance that I was gonna lose soon. And they said, you know, your body's literally shutting down from the stress, you know, you're sleeping, you know, five to 10 hours a week, you've gained like, 100 pounds, you've got diabetes, you've got high blood pressure, you'll be lucky to live six months. You know, and I'm gonna be honest with you, as a caregiver, I think we've all had that moment where it's like, we want out, you know, and I think, you know, it wasn't like a suicidal thought. But it was like, Finally, like, a way out where I don't have to feel guilty. Like, my body's just taking me out. I'm not taking myself out. So it's, it's fair, right? You know, when I really had to make that choice of like, am I going to live and how am I going to save my life and also care for mom, too. So I think that's really when the game completely changed was that day when I made that decision of like, okay, I'm going to do this. And I've got to do it with like, the first act of self care, which was 32nd act of taking a blood pressure pill and texting a friend that I had taken it, it all started with that 32nd Act, saving my mom my life, and changing how I cared for my mom's life.

Susie Singer Carter: 13:35

So can I ask you about that which which is it's, it's very, I resonated there resonates with me what you're saying very much. My body wasn't shutting down. I didn't, you know, I am the girl that will just keep going and going and going and going and going. And I think like, I think that's I've never gotten so sick, sick, as I have in the past year to you know, and I think my body's just catching up with with living on adrenaline for so long. Like you said, first, you said just a caregiver, right. So you walked out with that word, just a caregiver, that that concept, and then you had to make a choice between, you know, living and not living, you know, what was what was more attractive? What, what was the motivator for that? What gave you the final decision to go, I'm going to take that blood pressure pill, like was it your mom? Was it you? Or was it a combo of the two?

Christina Keys: 14:35

Well, I might cry.

Susie Singer Carter: 14:39

I'll cry. I'll be right right behind you do all the time. I cry all the time. Yeah.

Christina Keys: 14:45

You know, my mom was just a kick ass woman. You know, she, she, she was amazing. And she worked her way up from Rosie the Riveter to like one of the highest people, you know? in aerospace engineering, you know, as a woman and, you know, a keys woman, I couldn't just give up, you know, I watched her go through so much stuff, and of all people that wouldn't have been the person I could give up on, you know, and who was going to who was going to take care of her. And plus, you know what, I didn't want that to be the end of my story. I didn't want to have to go through all that just for that to be the end. Like, this can't be the end. And I gotta tell you, like, I don't know if it's, you know, God, Buddha, the, you know, Larry, from the convenience store, whatever it is up there, like, that's not the guy I believe in, that's going to take me through all of that crap. And like, then it's just shit. You just die. Right? You know. So I just knew that that wasn't going to be into my story. I didn't know how it was going to end or what was going to be the middle part. But, um, but I wasn't, I was going to do everything I could to to change the direction it was going. So

Don Priess: 15:52

and that's the last thing our parents would want for us. For to you to destroy your life. looking after them. That's that's probably the I mean, if she knew that, she maybe I don't know if she was aware of that, that, you know, that would be the last thing. No, she wants you to thrive? Not, you know, yes. To help her too. But for yourself. That's your her child. And, and for her to have known that would have been horrifying.

Susie Singer Carter: 16:18

Yeah, I think and I think that's true for most, just to throw that out there. There are there are parents that there that aren't as lucky as we are to have, like, loving parents that wouldn't because my mom said to me, you know, you got to live your life. You got to put me in a home, you know, when she'd have her moments of lucidity? And so yeah, you know, but that is not the case for everyone. And I we are aware of that. We know that. And we know that that adds extra stress because it's like it if that becomes that becomes a big issue and how you know, and that's a whole nother conversation. Just wanted to acknowledge that you knew

Don Priess: 16:57

you knew your mother.

Susie Singer Carter: 17:00

Well, yeah. Christina knew. You knew that. Yeah. Well, first of all, I'm glad you took that your blood pressure medicine? Yeah. And um, no, you're glad you did. And I know a lot of people are glad you did. And I know that you now, you know, isn't it funny that you said I'm just going to leave here is just a caregiver. By the way. I used to think I used to think the term was caretaking. Until I didn't know there was a term used to be I thought it was like, Oh, I'm a caretaker. You know, that was what I thought because I didn't even know anything about it. I knew nothing. And I and you realize it's not caretaking, your caregiving?

Christina Keys: 17:35

Right. And the thing is, is like if I wouldn't know, like, what an honor, it was to be a caregiver, I wouldn't know. And like, how much was going to change my life, how much it was going to introduce me to like, a whole different, like, level of love a whole different, like side of me, like how much it was going to enhance and bless my life. Like, I would have never said like just the caregiver, I would have ran to that opportunity, I would have been like, here's my two second notice. Like, I'm gonna go be a caregiver. Now. You know, it's it. And I have no idea and none of us do. None of us have any idea. We just we know that somebody we love is having a hard time or there's changing and we want to step up because we love them. None of us understand what we are getting in for. I mean, even if we read a million books, we really wouldn't understand. And I talked to professionals all the time, I talked to this one guy, very big guy in the industry, President very large organization. And he said, Christina, I used to be like the keynote speaker everywhere. Everybody hired me everywhere to talk about, you know, families and caregiving and all this other stuff. And then I wound up having to take care of my own mother and father. And what I realized is I didn't know Shaklee. And you just don't, right, you just don't until you do. Right. So if

Susie Singer Carter: 18:50

you knew you wouldn't have you wouldn't have had the transformation that you did. So Right. Yeah. So we none of us do. None of us do. I mean, I back to what you were saying I had, you know, I remember being at a at a family dinner, and an older cousin of mine was there who had lost his mom to Alzheimer's and mom was there. And she was just she was still walking, but she was had her, you know, and it was that was the hard part because she, you know, it was like having a baby, you know, because she had no filters and she wanted and you know, the whole thing, right? And so yeah, I remember him saying to me, You're so lucky i If I could have another day with my mom. And I thought I didn't know the gravity of that sentence. And the times that you don't, didn't do

Christina Keys: 19:40

don't. You don't because when you're in it, like, you know you're I mean, let's be honest, like caregiving isn't always beautiful and loving. You're not always grateful for that moment. I mean, half the time. You know, it's great, you're having a great moment with them and then the other half they're throwing crap at you or telling you you're not good enough for you know, you never know it could change every 15 minutes. You know what I mean? So, and in the thick of it when you haven't slept for three days, or you've been in the hospital with them, and you're you've got doctors and nurses and people that aren't listening to you like, No, it's not this glorious, wonderful thing. But I totally get that. Like, if even today, like if knowing everything I know about caregiving and and if God or anybody said to me, like, Hey, I'm gonna give you the hardest day of caregiving, like the crappiest day of caregiving you've ever experienced. But you can have one more day with your mom. Sign me

Susie Singer Carter: 20:29

up. Exactly. You know, it's, it's weird. As you're talking, I'm thinking about because I had two babies, right? And I used to sit and I told my mom after the first baby, you lied. She told me it wasn't that bad. And she goes, if I told you what it really was, like, would you have done it? It's like, it's horrific. Right? And yeah, like, but but, but to me in a way, it's such a, it's such a metaphor, you know, because it held that you go through to get what you get. It's worth it. And it's all worth it. And there's really actually nothing better to me than then caring for other people that and that. I mean, that is the biggest, that is the biggest gift you can give yourself at the end of the day, because there's nothing you can't all this stuff and you know, material and I love it. Don't get me wrong fashion, you still love it. You know, I like to travel first class, but you know what, you can't go, you can't take it with you. You can only take you can only you'll have your feelings at the end of your life. You'll have your memories, you'll have yours. Your peace of mind. And right. Yeah,

Christina Keys: 21:41

and when we're at the end, I mean, what are we going to think about we're going to think about the moments of love, we're going to think about the people we loved and, and those moments that we shared with those special people, we're not going to think about, you know, all the things we own. No, you know, though, now, and I think caregiving, it really gives us a whole different level and understanding of what unconditional love is I mean, true unconditional love, you know, and

Susie Singer Carter: 22:07

then, you know, when also would you when you were talking a little earlier, it you know, even though yes, your mom had a stroke, it's not Alzheimer's, but you know, the, the stages of of that kind of progressive disease for anybody, it's the same thing. And and your sense of, you know, your experience with with, you know, anticipatory grief, you know, starting from day one, when they told you she was had, like, you know, a day to live or whatever it was right. So you all you could do was live in in on the edge of your, your sword, right? You were like, you are like, constantly wondering, when is it going to drop? What's going to happen? Is she going to die tonight? Is she gonna die today? Is she gonna die today? I mean, I know that I was waiting for that phone call every day for 14 years.

Christina Keys: 23:00

Right? And then when she did die, it was like, Wait, how did that really happen? Like, he was supposed to die a million times before and she never did. Like we beat the odds for 10 years. Like, what I mean, I think me and my mom, were in complete disbelief when they said it's really time and we had really tried everything, you know, like, Well, no, it had been time a million times before, like at one point in, in the care journey. I mean, this is how I wound up having to like, leave my job because the doctor said she's gonna die. We're in the hospital, we've got the family round, you know, they're given the last rites, last periods or whatever. And everybody says their goodbyes. And mom says, like, you know, stay with me and hold my hand while I go. The doctor says you're not going to make it through the night. So I fall asleep, she falls asleep, you know, it's all it's all gonna be this peaceful, beautiful passing. Right, you know, and, and my mom wakes up, she says, I'm not done yet. You know, that was in 2017. So, you know, come. December of it was actually the day after Thanksgiving is when they told us she was going on hospice is like, what and then when it was really happening, like, Wait, something's gonna turn right. You know, Always did. Same with my mom, oh, my, it's very similar, you know, and it's part of my documentary is that, you know, because of the ageism and ableism, that is so rampant in our not only our in our healthcare system, but in our culture, right. So people want to write off older people home all the time. It's like they're dying, they're dying. They're dying. They're telling you they're dying all the time, which is so cruel to us. Because chances are they're probably they may not. And we did the same thing. My mom was supposed to die within two hours back six months before she died. And we called the whole family and we're doing vigil for four days. You know, like, no sleep and my finally my nephew goes nanny's not dying. My mom has Yep, she's smiling. She's hungry, like what is going on? Like, this is what goes on in our eldercare,

Susie Singer Carter: 25:07

because it always did.. because we because they are not a priority because they're not. They're not big moneymakers, you know, so that's the problem. And so, and that is a residual, you know, effect on caregivers because we are constantly going through that anticipatory grief, which is, I'm telling you, to me that is that is the worst. It is the worst because our cortisol is like all over the right. Yeah.

Christina Keys: 25:35

At any minute. Like it's like this living in this state of at any minute. Like, it's not like something could go bad. Like at any minute, somebody I love could die. But like, if you are not a family caregiver, if you have not lived in that state for a continuous amount of years. And even now, like being away from it for so long. And then having that experience the other day with Terry, I forgot how much it just wrecks your whole central nervous system and your mind and your body. It is not a fun way to live.

Susie Singer Carter: 26:08

It's not and it's not healthy. It's not

Don Priess: 26:11

can you tell our audience about Terry because I don't think we know who Terry is and what your situation is right now.

Christina Keys: 26:18

Yeah. So Terry, was and I believe just is the love of my life. Just an amazing person. Terry, when I first met him, he knew I love John qu Zack we met online when we met in person, he showed up at my house with a boombox playing Peter Gabriel song outside and

Susie Singer Carter: 26:39

Which one? Which song?

Christina Keys: 26:41

in your eyes, the one from the new I love John Cusack. And just an amazing guy, we had a great relationship. And, you know, after you know, caregiving really took a toll on our relationship, my caregiving with my mom, I became a completely different person. And I think by 2019, we had kind of, you know, we started dating 2000 to 2019, we had kind of run our course. And we decided not to be boyfriend, girlfriend, and just best friends, right? But of course, because of caregiving. I didn't have the money to move out right then. So we were roommates and but then he had a stroke, five to five months later, and I became his caregiver. And then he had another stroke. And so he needed more care. And I had to help facilitate get him on disability and get him long term care benefits, because you just you don't get him just because you're on disability. Right. And, and then 820 22 came and you know, my father, I was so busy focusing on my mother all the time. My father lived in California and April of 2022, my father died and it's like, hey, wait a minute. You weren't supposed to die. And so I'm trying to grieve. And my mom, you know, she had no my dad since she was four years old. Right? So she's got memory problems. She's asked continually. Where's dad? Where's dad? Right. And so, so I've got that happen. April 30. Terry had his last stroke may 5, right? And then, so I'm in the hospital. No, my cousin died May 5, Terry had his last stroke, May 9, my mom went into the hospital. And then I had to put Terry in assisted living in June, I had to take down our house and close out her house because it was being taken over by Medicaid given over to the state.

Susie Singer Carter: 28:38

I was just gonna ask you that? Did you have to pay down all his money? Yeah.

Christina Keys: 28:42

And so. So here I am, like grieving my father taking care of my mother working full time going to the skilled nursing Senator see Terry, and you know, because it's, I can't sleep going to the house and packing up our house. I mean, just all of these things. And then, and then, you know, I had to move him in October, I found him a better placement. I moved him and then November came, mom went on hospice, and then she died December. And so now Terry's in an adult family home, and I still go see him. You know, we still have that partnership. The I did, she does have a state Guardian now. And which is better, because honestly, the whole state insurance and Medicaid spend down is so complicated if you make one mistake, and I wasn't going to rely on I mean, I'm, I'm very aware that I know a lot in the industry. I'm very aware that I'm very competent, but I'm also very aware that I don't know enough that I don't want to I don't want to risk making a mistake. This is somebody else's life and so somebody who I love right and so can

Susie Singer Carter: 29:48

I just interject on that real quick because that's so important. That point you just made because it's so complicated. And you know, even the experts don't really know everything so like it It's hard. So I mean, I think that's an important point that you just made because it you can easily make a mistake without, you know, unwittingly and so, right.

Christina Keys: 30:10

Yeah, so I, I don't hands on care for Terry anymore, you know, I still go interact with them, you know if there's some problems with him I go and you know, kind of smooth that out because I'm the only one who can get through with him I do go visit with him and take them on trips and stuff. But it's very interesting the other day, because there isn't a lot of emergencies anymore with Terry, right. And you know, I've had a year mom died December 28 of 22, I've worked really, really hard to like breathing down my cortisone levels to learn how to sleep to learn how to be at peace, to learn how to, like, not freak out every time the phone rings. I mean, there's so much stuff that I had to do to get out of fight or flight mode. And it was interesting. The other day, I had a situation where I did have that moment that one of those caregiver moments with Terry, where I felt that again, that, you know, like somebody might die or something really bad might happen, where my cortisone levels Shut up, you know, the whole fight or flight thing. And I it was so foreign to my body, I didn't realize, you know, and all I could think of when I finally calmed down, which it took five hours for my body to calm down from that. And I didn't even it was a 15 minute situation that resolved itself in 15 minutes, right. And before, there was no just 15 minutes, there was, you know, another hour another nighttime now that you know that we were full time caregiving, right? And all I could think was, it was like this moment of like, shock, like feeling that in my body and not realizing it was that plus, like, multiplied by 10 for 10 years in my body, and then also sort of like, sort of grieving for that person who I was like that she was going through that and then grieving for all caregivers that were our bodies are going through that. And it's no, it's no wonder why so many caregivers get sick. And it's no wonder why the statistics for caregivers are so insane. I think like, what is it like 30% of caregivers passed before the person they're caring for and 35% of caregivers passed within five years after the person they're caring for. And then, like 65% of caregivers that are over the age of 70 passed before the person they're caring for. It's because our bodies are going through so much stress. And we're not going last thing we want to do is go to the doctors and when we do we hate doctors by that time because they don't trust love off, you know so much. Yeah. And so, yeah, it was very interesting to like, have that moment of like, you know, like, holy crap, this is what I lived in for. So

Susie Singer Carter: 32:41

what it is, to me is it's PTSD, because you are right. Oh, yeah, that's what it is. And there really should be a sort of like a debriefing, like, you know, away with after you are through for this, this particular journey of caregiving, because, you know, that that stuff, and I know everybody talks about it, like the day that we're, you know, right after someone that you've been caring for long term. And now who are you? And what are you? And also you get used to it, you know, it's like when you're living in an abusive relationship. Right. So we're not to you know, relate the two but in a way it is because the, the emotions are so high for so long, right? You become used to it and that, that that becomes your,

Don Priess: 33:31

your comfort zone.

Susie Singer Carter: 33:33

Yeah, exactly.

Christina Keys: 33:34

Right. So we don't understand. We don't understand, like, when we're quiet inside, when we're not having that like massive energy inside of us when we're not experiencing that anxiety when we're like, feeling peace, that first time we're feeling peace. It's like, Wait, am I bored? Am I what? We don't understand any?

Susie Singer Carter: 33:52

See? No, most it's like, right. You could feel like, like anxious about it. Because, like, yeah, who am I? Where, what am I supposed to do now? What is you know, what's my purpose? My purpose?

Christina Keys: 34:05

Yeah, right. Yeah. And I'm, you know, I'm really fortunate in the fact that I know my purpose, but still, I did not like I still had that moment of like, Who the hell am I? Oh, todo and, and, and nobody talks about, like, you know, recovering from being a caregiver, they talk about the grief and I even I remember like, and I know a lot of people in the industry and I remember putting on like my social media like what did you guys do to recover from like, the recover from the caregiving. Now when my father died, I was lucky enough to be able to go get grief counseling, so I know the difference between grief right? And so everything everybody shared was all about the grief. No, there's differences right? There's a difference. When your phone rings after the person you love passes that you cared for and your your your anxiety shoots up, right? And you think like you need to have your phone all the time, you know, because that was the hotline for mom. I remember, like the first time I went on a date after my mom passed, like, here, I'm out with this wonderful man, he's talking. All I'm thinking is like, oh my god, like, I didn't have to drive my own car. Like, I'm not on call, like, my phone is in my purse, like, I don't remember, Gosh, darn thing the guy said, like, I don't have to, like I didn't have to pay anybody to care for my mom, or, I mean, there was so much stuff that went along with it. But there's so much stuff when it comes to recovering as a caregiver. It is not just the Greek New percent people, people, people don't understand it. And you know, trying to deal with that grief plus, bring down your cortisone levels. It is not easy to live in a state of somebody could die at any minute for 10 flippin years. Now, how do you do that? And then all of a sudden, you don't have to live like that anymore? How do you know?

Don Priess: 35:56

But it's ingrained? It's ingrained in you at that point, you know, so how do you know? Let me ask you, it might be an odd question like now as a caregiver, and now somebody who that now is on the other side of that, what's the first thing for people that you would say to somebody who are about to to enter this journey? What's the first thing they should do to start this this journey, both at the beginning of caregiving, and then after it's over? I don't know. It's a big question. Kind of

Susie Singer Carter: 36:26

a huge question. You got three hours, folks?

Christina Keys: 36:30

Well, just the first thing, right, if I would have known, right, if I would have known. Personally, if I would have known about care coaches, as a caregiver, I would have hired a Care Coach immediately, right. And if you don't know what a Care Coach is, a Care Coach is somebody who's similar to a life coach, but they've been a caregiver before they've been trained on how to coach you through on that care journey. So it would have saved me a crap ton of money, I would have made a heck of a lot less mistakes, they would have helped me learn how to talk to doctors and advocate for my parent, my mom, I mean, they would have taught me so much, they would have taught me about self care a lot quicker than the people who are like, Oh, put your oxygen mask on first, which I don't know about you. But when he says that, I'd like to throw punches, you know, because they don't, they don't follow up, right? You know, but you ask a caregiver, and they'll say, like, put your oxygen mask on first, but then they'll tell you, you know where to buy it, how to put it on all this other stuff. Nobody else does, right. And so for me, anybody starting out, I would say, first of all, find a Care Coach or find a support group, one of those two, if you can't afford a Care Coach, then find a support group. They're free, they're everywhere. If you don't know where to find them, you can easily go to caregiving.com, or places like that national Caregiver Alliance, places like that hope dementia support group has a bunch of support groups, and you can find support groups and they're free, you're going to find people who are walking through the same journey as you because your normal is going to become a completely different normal when you're a caregiver. So I would say first thing is, understand that you're not alone, if you're new to caregiving, there's over 53 million family caregivers out there. And there are free support groups everywhere. So for the people who are after caregiving, what I would say first of all, is Be gentle with yourself, right. And secondly, you're going to have a different emotion every five seconds, and everything is going to be new to you how your body feels is going to be new to you. And, and it's okay. That it's not just grief. You know, and, and again, you want to stick with people who've been through that journey before, if you've been through the caregiving journey, you probably know people who've been through the journey after caregiving, talk to them. Because if you're talking to people who have just gone through grief, but they haven't done the caregiving journey, they're really not going to understand what you've been living through that place of, they're going to die for all these years, and then they finally do, right. That's what I would say to folks who have gone through that and it's not easy. Please have just think about how loving you were to the person you cared for. Please try to show yourself just even a 10th of the kindness that you showed them because what you're walking through is, is very difficult.

Susie Singer Carter: 39:28

It's good, really good advice. So I think that's a great transition to caregiving.com and this and what you You are such a huge part of and that's how I met you and you know the caregiving.com champions program and what you're doing with that which I was a part of, and I would put it on hold because of the documentary I just can't You know, I they're both very important things. They're both important and but I am always cheerleading you on and I consider them myself still part of that community, and I always will. So there and but so tell tell us about caregiving.com What, what it what it does, what how to find it, what your care what the care giving.com Champion Program is, you know, and break it down a little bit.

Christina Keys: 40:19

Alright, I'm gonna break it down. They're giving.com is a place where family caregivers can go to get all kinds of information, whether you're looking for podcasts, whether you're looking for articles, whether you're, you know, if you're a caregiver for somebody with Alzheimer's, Parkinson's, if you're a caregiver who's somebody who's my age, millennial caregiver, you know, male, female, whatever you're going to find community there, you're going to find information there. There's trainings there, there's video there, there's everything you could need there. One of the other things that we offer is the caregiving.com champions. So when I came with onto caregiving.com, they were just a digital platform. And I had built when I changed my career, I went into the senior and family caregiver industry, and I created a hyper local nonprofit here called loving them forward. And that model was so different that within two years, we had won like an award for being one of the best resources for family caregivers and seniors in our community, right. And so caregiving.com found out about it and approached me and said, How would you like to duplicate that across the United States? And I said, Absolutely. And I said, here's the caveat, I'm not going to hire salespeople. And these BDM people who don't know anything, I would like to, you know, bring on family caregivers who've been through it and who understand, you know, what the difference is of resources, you know, and I don't want to charge people money for, you know, advertising, I really want to make some different changes in the industry. And so that's what we're doing is with these champions, is we're going into communities, and we're building hyperlocal sets of not only resources, but actual community, you know, support. So, you know, I'll give you an example. I went to Indianapolis, I didn't know a soul, I hired a champion there, they are kind of like the eyes and the ears of the city, they introduced me to like 25 resources I showed up in that town. Within two weeks, I had changed that to 154 resources, everything from, you know, micro resources to large resources, we had put together a 43,000 square foot, you know, event and Expo for family caregivers. And that we did that within like, I think that was two months and completely changed what was going on. And what was the best compliment about that what made me know that we had made some changes, there was a lot of heavy hitters in that town, you know, people who were paid to network in that town were paid to know the resource in that town, that came up to me personally and said, I didn't even know half of these resources were in our town, right? Because what happens is, you know, over here, there's 30, over here, there's 30. And over here, there's 30, but they don't get together, right. And all these people are marketing to seniors or veterans or people with disabilities, nobody understands that, like the people that are signing the contracts, and bringing these people in are the invisible caregivers behind them, right, they don't know how to market to those people. So you know, I go into town with the champions, and I bring these people together, and I educate them on why it's important to see those family caregivers, right. And when I leave that town, I don't just walk away, I leave with an opportunity for them to have a place to continue to grow, whether it be a monthly networking meeting, or a social media group or whatever. And so those towns grow and they flourish. And, you know, they're able to understand how to connect with family caregivers, now, not just market to seniors. And we've done that and over, you know, 100 different communities across the United States. And we have an initiative coming up this year, called Keys to the community, where we're sending me out and you know, growing even more cities across the United States, and really, you know, the champions are gonna play a really big part of that, too. So, yeah, I mean, I think it's fun because I get to go all over and, you know, just build these communities that are supporting family caregivers, and I get to meet a lot of family caregivers who are, you know, having the same struggles that me and you had, you know, and we don't have to do that anymore. Right, right. We've all struggled to find stuff in our own backyard. No, of

Susie Singer Carter: 44:21

course. So what what does what does a champion do? In a nutshell, just like what and what how can if somebody would like to participate in this program? How can they do that?

Christina Keys: 44:33

So a champion a nutshell, you are the eyes and the ears of your city, right? You'll connect with me it's a it's a contract position really works around your schedule. It's very part time. You can be as involved as you want. And, you know, obviously I'm not in Hawaii, but if you live in Hawaii, and you're a champion, you would be the eyes and ears of that city. You introduce me to a few key people or even just tell me about those people, me and the community growth teams. Take it from there. Some champions participate in events, some champions participate in networking groups, it's really what you want to do what your bandwidth is. And if you want to be a part of that, you can email champions@caregiving.com. Or you can go to the caregiving.com website and find out more information. Either way, we're hiring, I think I've got 100 more slots for champions right now, because we're, we're growing. And in some of those places, we've got so many cities, there's 385 Different metropolitan areas across the United States, and I've got a lot more work to do. So.

Susie Singer Carter: 45:35

And it's so in just just to, to, you know, extend what you just said is like, it's, it's also really great for you as a champion, because you have a built in, you know, tribe, as it were, that you can, you can lean on at any time, and everyone is really, really giving and open, because that's the nature of caregivers anyway. So Right. So it's so, you know, it's a win win.

Christina Keys: 46:00

Right? Well, and those champions Yeah, for sure that, you know, like you, you know, these people become my family, you know, what I mean, these aren't just people I work with, you know, they're how many each other's support. And, you know, it's just a beautiful thing. You know, at Christmas, I thought I was going to spend Christmas alone, I spent Christmas with a lot of people, the champions who were going through some of the same stuff, losing their family members at the same time. And so it's a beautiful thing, and I love the work I get to do, my mom was very involved in the work, I got to do any of the press gigs I did, or anytime a camera crew came in, she turned into an instant movie started, you know, and very supportive. And she made me promise to continue, you know, to do this work. And every time I get to do this work, it's like, you know, it's like this love letter, I'm writing to my mom, like, you weren't a burden, I love ya, and this is what we do keep getting to do. And I

Susie Singer Carter: 46:57

just, can I just, I just want to say about you, Christina, that you have been consistent, since I've known you. And you have, you know, you've always such a support, like, I don't know how you keep up with social media, because you are, if I post something, you respond, and you support it, and you share it, and you're just extraordinary that way. And I and I don't know how you do it. Because I think, you know, I wish that I think that I'm at, you know, a supportive tribe member, but I don't, you know, sometimes I just get to the end, I'm like, I can't even look at social media right now. You know, and I just think every time I do go on, there you are. There you are. And, and so, you know, it's it's sort of priceless, what you do, and you are consistent. And you know, it and, you know, every every culture has its has its good players and bad players, you know, and we don't know, but you are definitely one of the good players. And, and so it's I'm I'm glad that you're at the forefront of it. Because we need we need, you know, transparency with who we're dealing with. And because we're already going through enough set, right, right. So so just know that if you are interested that you know, Christina is is for real, she's authentic. She's the real deal. And you're going to have a good time with her. She's even a party down for sure. You're going to grab some good cries. I'm already crying with you. And you know, what else is life about? Right? Yeah. And so I really appreciate you so much. Yeah.

Christina Keys: 48:40

Thank you for what you do. I mean, the reason why I always share that stuff is because I see that stuff come across and it's like, Oh, my God, the caregiver has got to know I just think about I think about people like me when I first started and people like you, like, we would have wanted to know about that. And I get so excited to be able to share that. So thank you for everything. Oh, well.

Susie Singer Carter: 48:58

Oh, my pleasure. I mean, I just, you know, for me, my mission now is like, let's take care of us, our future us. And if we don't take care of our future as we're in big Right, right. We are in big poop because it's it's coming like this. We're gonna blink right? So yeah, that's, that's my contribution right now is is as a gift to our future selves, which isn't that far away. So for anybody you know, even if you're 20 years old, blinking you're 90 So, um, well, I thank you so so much. Is there anything else that we missed that you would want to chat about that you know, anything?

Christina Keys: 49:41

No, I just, you know, thank you guys for having me on and you know, you know, make sure to check out caregiving.com And feel free to connect with me on any socials because I'd love to hear about any caregivers that are out there and any great work that's happening for caregivers so I can share it. Yes,

Susie Singer Carter: 49:59

she does. I was

Don Priess: 50:01

Without question.

Susie Singer Carter: 50:03

I promise you that all right, well, thank you so much. And you know, we do this podcast for no other reason because because we love it and because we want to share positive, you know, perception of caregivers positive perceptions of Alzheimer's for sure. And you know, do away with the stigmas and like bring it out because that this is what life is about. And we do it because we love we love our people that we care about when we love our, our tribe. So and that's why, you know, why is it done? Why?

Don Priess: 50:37

Why? Well, I know well, you know why? Because love is powerful. Love is contagious, and love conquers all. So we thank everybody for listening watching today. Please subscribe, join all those things. Definitely visit Christina on caregiver.com

Susie Singer Carter: 50:54

Caregiving

Don Priess: 50:54

and we will absolutely...what did I say

Susie Singer Carter: 50:56

caregiver?

Don Priess: 50:57

Oh,

Susie Singer Carter: 50:58

Caregiving.

Don Priess: 50:58

I like caregiving better me ter giving.com. And we will absolutely see you next time on love conquers all. Take care, everybody.