The Art of Redirecting: A Caregiver’s Superpower

Redirecting And Choosing Your Battles

SPEAKER_00 0:00

That was part of my training with the Alzheimer's Association is pick and choose your battles. We use the word redirect a lot, that you don't, you know, you can't get into their world all the time. Well, you can definitely redirect them out of that world. And you know, use the example of my grandmother of her dog passing away. And she asked about the dog the next day, and my aunt told her, So, well, you remember, said he passed away, and we had the nice little funeral in the backyard and got him the nice headstone. And you could just see the tears run out of Grammy's eyes. It was the first time she remembers hearing her dog died. And so the next time we realized, hey, we've got to redirect, and we just tell them the dog's outside because the weather's pretty, and as a matter of fact, we got to water your flowers. And so I'd take Grammy to water flowers and never thought about the dog and diffuse that situation at that time.

SPEAKER_01 1:46

The prayers of the righteous availeth much. Exclamation point. In my reflection, I was watching the news this morning, and this segment showed up. I will be following her now because she is experiencing exactly what I am. He's an on-time God. Thank you so much. To let everybody else know, uh Parenting Up has been on several news broadcasts across the country. Yep, the local news, wherever. And so we are expanding the family by individuals who are learning about us through those segments. So thank you to the local news. Shout out to Kimberly. If you would like to be the recipient of a supporter shout out,

Meet Dan And His Why

SPEAKER_01 2:35

please leave a review and a comment on Apple Podcasts or YouTube. We're parenting up everywhere. All right, so now we're here. Dan, you know I'm not lying. Tell them who you are and what you do, buddy.

SPEAKER_00 2:51

Well, first let me say thank you so much for letting me do this. I am Alzheimer's disease is my passion. Uh again, my name is Dan Phillips. I work for the Georgia chapter of the Alzheimer's Association, but it goes a lot deeper than that. And I'm I'm you know, I beg everybody to share their story, and for me to be able to share mine today and to do this interview. Can't tell you how excited I am to do it as well, too.

SPEAKER_01 3:17

Okay. And I gotta tell y'all in advance, Dan has all kinds of jokes now about all kinds of things. So, you know, here at the Fans and Up Podcast, we lead with levity. We believe that humor heals. So everybody get ready, pull out your tissue to either cry and or have to put up a loogie because you're laughing so hard. So let us know when you were first impacted by the disease. Which, which, which of the women that you love so much did it hit first?

SPEAKER_00 3:48

So it starts out hard to believe. Over 20 years ago now, um, I had a dream job. I was working at a pharmaceutical company. Excuse me, wasn't planning on going anywhere. I made more money than I ever thought I could make. But my grandmother was diagnosed with Alzheimer's disease. And I went down to see her, it really blew my mind what my aunt had to go through to take care of her. So I thought to myself, well, there's something I can do. I said, let me play a lot of golf. I said, I know how to fundraise a little bit. I said, let me get my buddies together, we can raise raise a little money for Alzheimer's. Um, when I did that, the Alzheimer's was when I took the money to the association. Uh, they told me about it was called memory walk back then. It's the walk to end Alzheimer's now. And they wanted Merck and Company, my employer, to have a team. So I'm like, absolutely, we'll do that. And then the following year, I was able to chair the memory walk, the walk to end Alzheimer's. And really fell in love with the people that I was meeting.

SPEAKER_01 4:49

Then if they let you chair it only in year two, you and your buddies was to raise either some good money or you had a lot of fun. One or one or the other, they wanted you back.

SPEAKER_00 5:00

Well, it was two things, I think. Number one, we raised a lot of money. Okay, but we also started sharing our stories because I met other people at the golf tournament with the same thing. Twenty years ago, people didn't talk a lot about Alzheimer's disease. I was starting to hear people talk about it and realize that, hey, I wasn't in this by myself. And so after that second year, um, which I originally thought was tragedy, we've got called and said that they were going to close the plant. They're in Albany, Georgia, and I didn't have a job. My first thought was, oh my God, God, why does all this bad stuff happen to me? What are you doing to me? But then I get a phone call from the Alzheimer's Association and says, Hey, we're looking for a development director. Nothing on my resume says I should be a development director except my volunteer work. And so my first thought was, well, I got a nice severance package from Merck, nice little, nice little paycheck. I can do anything for a year. And then now, fast forward 20 years later, I'm still working with the Alzheimer's Association. Uh, my grandmother has passed away, but all three of her daughters, including my mama, are now living with Alzheimer's. And then my wife, her mother just passed away uh after 14 years of Alzheimer's disease. And so you know me, I'm the most optimistic guy that you're gonna run across. And my first you know, thoughts could be, God, poor me, it's all in my family. Why does this happen to me? But I realized the good Lord put me where I was supposed to be in my line of work to meet so many other people that are dealing with the same thing, and we're able to help each other. Um, and then not to mention, and we'll get into this a lot, I'm sure, but all the advancements that are being made uh in Alzheimer's disease and testing and in research. Again, when I first started, there was nothing. Right. And then now, you know, we we have a blood test, we have treatments. Um all that happened over the last 20 years, and I got to have a front row seat to that and help be a part of that, which is pretty cool.

SPEAKER_01 7:08

That's amazing. So you you thought I'm gonna take this one year and hang out doing something that I love that you weren't getting paid for. You know, you we hear it all the time. What would you do if you could do whatever you wanted, right? And money wasn't an issue. And money wasn't an issue. So for that year, you you had a nice little package to take care of the bills. So you said, I'm gonna go and hang out with these Alzheimer's people 20 years later. So you just kept doing it every year

Early Signs Denial And Getting Diagnosed

SPEAKER_01 7:40

after year after year because of how much it means to you.

SPEAKER_00 7:43

How rewarding it was, exactly.

SPEAKER_01 7:45

Yeah. What let you all know that your grandmother had Alzheimer's? Do you remember any of the symptoms or sinus? I remember my aunt talking a lot about it.

SPEAKER_00 7:58

My aunt was her caregiver. She'd quit her job. She was a registered nurse to stay home with her. Uh, but we noticed it in the cookie. My grandmother was a big cook. Um, noticed things weren't tasting exactly right. And then we started noticing things were, you know, said that she put them in the recipe, but yet they were still in the cabinet. So I think those were the first signs. I think we wanted to ignore that at first. Like a lot of people, it's like, well, she's just getting old. She's, you know, it's not not that serious. Um, but glad my aunt had the um, you know, the know-how to, hey, this isn't right. This isn't just aging. Let me look a little bit further. And even though she couldn't get tested with uh, you know, a blood test or, you know, the spinal tap test back then, um, what the doctors did was the the normal test of the you know, draw the clock, and what and she failed that miserably. And so then we realized that um something more than just getting old. Yeah.

SPEAKER_01 8:57

Yeah. It's uh I gotta tell you, definitely for Southerners. If people start messing up their recipes, I just want to go on record. Man or woman, if if they have been the cook in the family, you know, for holidays, birthdays, Sundays, Saturdays, what no matter what your religion is, and then all of a sudden they put in sugar where salt should go. Don't just say, oh, well, you know, it's white and granular, so they got confused. No, no, no. Your grandmother, your uncle, if they've been barbecuing ribs for 40 years and all of a sudden they start barbecuing, you know, sticks and wood off the branches of the tree and not putting meat on the grill, there's a problem.

SPEAKER_00 9:47

Absolutely. Or if the stuff starts coming out burned, or if it doesn't have that barbecue flavor that it used to have, if they're forgetting things. And it's so easy for all of us, none of us want to see our parents become frail. And so, even as much education as I had, we wanted to deny that, right? It's like, hey, she's just getting old, or as my sisters would say, well, mom's always been scatterbrained, mom's always been, you know, witty. And we're like, yeah, but she always knew who her kids were, or she always, you know, could get to work and get back home again. And that's what the signs we saw with my mom was getting lost a couple of times. And then um, you know, late, really, really late to like a birthday party, or we're all supposed to meet back at her house and she wasn't there, getting lost. And so that's probably the first signs we noticed. Um, thank God again that I worked with the Alzheimer's Association because I had two sisters at that point were like, mom's always been scatterbrained. Right. You know, that's gonna happen. Mom's never been good with direct, so you know good and well she's had the call and or she's lost before. Yeah, that's different though. That's going out of town, that's going to a new place you might go to once or twice, you know, in in a couple of years' time. This was driving home to her house that she lived. Right. And again, we wanted to be in denial, which is no different than anybody else. And um, you know, going back to working with the Alzheimer's Association, I get to hear those same stories and I realize that I'm not in it by myself, which is really cool.

SPEAKER_01 11:17

How did your sisters get on board? Or did you just kind of start uh taking mom to neurological appointments or something on your own and informing them later?

SPEAKER_00 11:28

Yeah, no, it's um we I an older sister of mine who is now my mom's caregiver, we were on the same page. It was convincing the younger sisters, right? Okay. And so association, you know, things like, you know, it's not a like every day. Like there's some days that are good days. Even today, there's some days that are good days. And my sisters would think, well, I I called mom yesterday and she sounded good. I'm like, absolutely. We would share information with them. Yeah, this happens. They do have good days. They do have where they remember. Um, but it's the time in between that they don't. And then the other thing with my sisters that we had to convince them of is it's not just forgetting things, it's getting things turned around a little bit. Getting, like you were mentioned, the mixing up just because it's white sugar, white salt, um, and mixing that up. That's part of Alzheimer's disease. They just didn't forget that I needed to put sugar in there. They knew they needed to put it in there, but they mixed up salt with sugar. Exactly. And so once we started convincing my sisters of that, uh, then they kind of got on board a little bit. But our issue then became mom never got the diagnosis. Um, and this is a to me, it's a horror story for me. And I I I think about it, but when we took her, when we knew something was going on, we said we've got to get a diagnosis. We, you know, at that point, new drugs were coming out. We didn't know if mom qualified for it, but we've got to get a diagnosis. And so I had them FaceTime me when she had her appointment. And the exact words of that neurologist was, it doesn't matter if your mom has Alzheimer's or not, so we're gonna treat her the same way.

SPEAKER_01 13:16

What?

SPEAKER_00 13:17

Talked a little bit further. Wait, hold on, then I was livid.

SPEAKER_01 13:20

This hold on a second. I gotta make sure that I keep my words together. Even though it, you know, this is an adult-ish show. I don't wanna use all the swear words that I've ever heard in my life, but that is appalling. It was for a person in the medical industry, because it's so freaking hard just to get the courage to take your mom and for your sisters to go. Everybody's an agreement, like it took a while just to do that. And then for a neurologist to say, we're gonna treat her the same, how do you treat somebody the same as if they didn't have a disease?

SPEAKER_00 13:58

So if you think about it six years ago, five years ago, right? Le Kimby wasn't available at that time. There was drugs, you know, in club in clinical trials that we were hoping to get mom into. But I let when once the doctor said that, she talked for another maybe two or three minutes, and I said, Hey, time out a minute, like you just said, time out. Go back to the part about it doesn't matter if she has Alzheimer's or not. I said, number one, if we can get the diagnosis, then we've got a family on the same page. Then my sisters won't say she doesn't have it, she's just getting old. I said, and then number two, I said, and I'm not a doctor, not even close to being a doctor. But I said, I know there's drugs out there in clinical trials that we would like mom to, you know, qualify for. And I said, and I also know, um, because we had we were talking about the spinal tap test. And then the neurologist said, let me let me back up just a minute. Said, first of all, for insurance

Humor The Lie Of Love

SPEAKER_00 14:55

to even pay for the spinal tap test, your mom has to be on the maximum dose of Aeroset, which was a drug they gave to a lot of dementia Alzheimer's patients. Didn't slow the progression down. And I'm like, so where's time out again? Wait a minute. So you're telling me that before my mom can even get tested, she has to wait a year to get on the maximum dose. At that point, she was taking like 0.25 milligrams, I think. Right. Would taking her a year to get to the maximum dose. Right. All that time's going by that she can't get and um then it became the insurance thing, which is still a fight today, and that's a whole new show that we can talk about and we can use the swear words on you know, when we talk about them, but um, it was just an eye-opener to realize how much the medical club community even needed to be educated on um Alzheimer's disease and what we can do for it. Like I said again, this was six years ago. And so we got mom into the University of Georgia, she got tested there, that's where she got her diagnosis, and then it really brought our family closer together. And again, I said it earlier, I'm the most optimistic guy that you're gonna meet. I can find I can find a lot of good that's happening with our situation with Alzheimer's disease, but it got our family a lot closer. And then it made me realize because then we started telling stories about mom and things that she used to do. And a lot of it was, well, wait a minute, where was where was I when that happened? You know, I think about a surgery. Um, where was I when that happened? And looking back on it, I was working at Merck, I was chasing that almighty dollar, yeah, wasn't thinking about what was really important to me. Um, and so that's another reason, too, why working with the Alzheimer's Association, a lot of it's men were taught, and it's women too. How much can you make? How much can you acquire? How much can you go gather? And and and at the end of the day, that's really not what's important to us, right? I've seen so many people at the end of their lives, they're selling stuff pennies on the dollar. It's just stuff. But I think about what did you miss to get that stuff? That's right. Note in my own life. I missed a lot. I missed a lot of family things because you know, I'd make the money, but then I'd go spend it just as quick to be able to make some more. And then we're the with the excuse of, well, I'd go work next Sunday double time and and and make up for that.

SPEAKER_03 17:25

Right.

SPEAKER_00 17:25

Um, and so, you know, that's always been my advice now to everybody is when you're when you're looking for your employment, make sure it's something you really enjoy doing, something that um, because you're gonna spend a lot of time at it, make sure it's something that you're passionate about and it's not about the dollars, it's not about the money. I wish they would teach us, it's about what you spend, it's not about what you make. I love that. When I took the job with the Alzheimer's Association, again, the first year I had the severance package, I didn't have that severance package for the next 19 years, but I didn't miss a meal, I didn't go to bed hungry, um, always had a roof over my head, um, and doing pretty well. Right. Um and I get to meet people like you every day. Every day, people who have been touched by Alzheimer's, they have their own struggles, they have their own worries, but yet they find time to help something that I'm so passionate about. I know how blessed I am.

SPEAKER_01 18:25

That's that's that is simply amazing. Now, when you've named multiple people in your family um that you're close to and that they have been uh you know, struck with the disease. What can you share about the more um connected and humorous side of some of the moments um maybe with your aunt or with your mom?

SPEAKER_00 18:59

I've got so many funny stories that I could tell. Um, and that's the thing. This is devastating. There's, I mean, I'll sit here and cry over some things my mom's done, right? But some of the stuff she's done is funny. Yeah. You know, it's just downright funny. You have to laugh at it. You're not laughing at him. You're really you're laughing to keep from crying.

SPEAKER_01 19:20

That's right. You're laughing at the situ. I I look at it like I'm laughing at the situation. And I really believe if my mom were alert enough, she would laugh too.

SPEAKER_00 19:30

Oh, absolutely. Yeah, absolutely. And that's the um, I think that's what the beauty of it is. Again, the education that I've received from working here is pick and choose your battles, right? So the sad part of my story is my mom thinks I'm my dad at times. And my dad wasn't a very good person. My dad was a big womanizer, several affairs. She thinks my wife is a mistress, but the pain that she feels is real. Yeah. You know, eyes red, swollen, crying. Um, you know, I gave you three kids, and this is what you do to me. And I just want to shoot her and say, I'm one of those kids. Right. But at that point, I got to turn my back and walk away. Now, there's other times that she's asking where her mother is, or thinking the kids are all in school and they're out. No sense to try to argue with her about that. That doesn't really matter. We just go along with it, right? Yeah. Um, well, yeah, mom, you know, Grammy hasn't called me either. You know, don't have to go into the fact that, hey, Grammy died 19 years ago. Right. Um, we say, Yeah, she hasn't called me either, but you know how busy how busy she is. She loves her her flowers. She's, you know, the weather's perfect. She's probably out watering flowers, you know. She'll she'll catch back up with us. There's no doubt about it.

SPEAKER_03 20:46

Right.

SPEAKER_00 20:46

Um, but the funny story that I tell, I think it's funny, um, and it didn't happen too long ago, but my mom had to have a colonoscopy. And she somehow got into her head that she scheduled two of them back to back, really upset with herself that she scheduled and had two colonoscopies, one on a Thursday, one on a Friday.

SPEAKER_01 21:08

You know what? On behalf of your mom, I would be upset with myself too. If I scheduled back-to-back days, colonoscopy money, I want like one every Friday.

SPEAKER_00 21:17

After maybe massages, maybe it's something different, but but uh colonoscopies, no. Um, but she she swore she did that, and she was visibly upset about it, you know, knowing that was gonna, she didn't have a lot of money in her mind thinking, how am I gonna pay for this? I did, should have done it, made a mistake. But my first thought was, why argue with it? Why make her feel worse? And so I told her, I said, Mom, I was with you when we made those appointments, and I saw the sign in the doctor's office that said, buy one, get one free. And she took it first as no, they're gonna they're gonna charge me for that second one. And I said, Mom, I said, No, I said, I'm your power of attorney. I said, I'm not gonna let you pay for that second colonoscopy. And then I turned it around. Around. I said, Mom, think about how healthy you are. You've been checked twice. They didn't find anything. You're, you know, in your 80s now and you're still just as healthy as you've ever been. I said, feel good about that. And then she's all smiles again. She's not upset at herself, or I love, you know, scheduling some colonoscopies, which she did do. But that was part of my training with the Alzheimer's Association is pick and choose your battles. We use the word redirect a lot, that you don't, you know, you can't get into their world all the time. Well, you can definitely redirect them out of that world. And um, you know, use the example with my grandmother of her dog passing away, and she asked about the dog the next day, and my aunt told her so well, you remember, said he passed away, and we had the nice little funeral in the backyard and got him the nice headstone, and you could just see the tears run out of Grammy's eyes. It was the first time she remembers hearing her dog died. Right. And so the next time we realized, hey, we got to redirect, and we just tell them the dog's outside because the weather's pretty, and as a matter of fact, we got to water your flowers. And so let's say Grammy to water flowers and never thought about the dog and diffuse that situation at that time.

SPEAKER_01 23:10

But so the the the example you just gave is highlights how much is kind of on the fly, right? When you were a caregiver, you could have read pamphlets and read books and talked to neurologists and talked to individuals who are on staff at the Alzheimer's Association. But when you get in it and a moment happens and you weren't quite prepared, maybe you didn't have enough sleep the night before, maybe you haven't eaten lunch yet. And before you know it, you're just saying, Hey, you you remember the dog just died. I mean, it and it's such an easy slip up to make. But kudos to you and your family because you don't quite get it right. But the next time you pivot, you make a change, absolutely, and you improve, and it's okay. And that's something that I want all caregivers to recognize. You don't get it right all the time, even if you know what the standard of care is, and this is the we redirect and we don't say this, you're gonna miss it. But don't beat yourself up about missing it. Just be more prepared the next time an event can happen that gives you an opportunity to maybe like I like to call it um the lie of love. Yeah, I used to have such a hard time in the beginning. It's your mom, you can't lie to your face. Oh, I can't lie to her face.

SPEAKER_00 24:39

You gotta tell her exactly what's going on.

SPEAKER_01 24:41

I gotta tell her, and now I'm like, you know what, Jay, the more you love her, the bigger these lies. They're gonna be big and juicier because her the Alzheimer's is taking more of her cognitive abilities. So you gotta be more creative with your stories.

SPEAKER_00 24:55

You know, I mean you hit the nail on the head a while ago when you said maybe I didn't get enough sleep that night, or maybe it happens all the time. Caregiver stress

Caregiver Stress And Accepting Help

SPEAKER_00 25:05

is real. And if you look at the stats, caregivers are gonna go down first before the person they're caring for. And that's a struggle that even we have with my sister, who is my mom's caregiver. The family has to watch out for those caregivers as well. We probably all made that promise to our parents. Hey, I'm never gonna put you in a home. You're my mama, I love you more than anybody, and I'm gonna take care of you better than anybody. Well, the first part of that's truth. That's your mama, I love her more than anybody. But there comes a time when somebody can do a better job taking care of them than you can. Doesn't mean you love them any less. Correct. Doesn't mean you're giving up on them, but it allows you, like I tell my sister, to spend mother-daughter time and not patient caregiver time. That's a big difference. That's a huge difference. And she's starting to see that as well, too. Okay. My aunt, who took care of my my um grandmother, I don't know how much she actually took care of herself, but she developed Alzheimer's now. She's living with Alzheimer's now, but her daughter, who takes care of her, knows better, knows that I can't pick her up and put her in her wheelchair and then pick her up and put her in her bed. Um, you know, we're thankful that mom can still get around and walk, but it's gonna come to a point of that. My sister has to realize, you know, at some point I got to step back and get some help. And and she's gonna do that.

SPEAKER_01 26:30

We'll we'll pray that um that will be a smoother transition than some of the other stories we've heard about.

SPEAKER_00 26:39

Absolutely. I mean, I horror story I heard. It was at one of our leadership summits where a guy, um the mother was diagnosed with Alzheimer's. Um, the dad had the attitude, I'm gonna take care of her. I love her more than anybody. And the son was like, Dad, no, we got we've got a long-term care policy. We have money. Right. That's not your job. No, that's my wife. I love her. Um, and then he gets a phone call, you know, months down the road. Dad had a heart attack, passed away. And so now he's got to take care of his mom, put her into a home without his dad.

SPEAKER_01 27:14

So mom ended up in a facility anyway. Anyway. And then the father Sooner, right? And yeah.

SPEAKER_00 27:19

Yep. And the and then the you know, the the father's not around, the husband's not around. Um but again, it's you know, I think we'll be going to our grave fighting that for a caregiver to say, I need help. They just can't say it.

SPEAKER_01 27:33

Uh yeah, I can't say it. Absolutely. You know, I and I'm and I'm out here advocating for caregivers, and I'm I'm feeling more like my grandfather now. Uh uh, don't do what I do, do what I say. Right. So I'm I'm telling caregivers uh all the things I've learned here at the Alzheimer's Association about what is better for us and what my doctors are telling me what's better for me. But I will admit, I'm not always good at doing it. I at least now am aware that it would be better if my back doesn't go out, if I don't have a heart attack, if I don't have a stroke, if I don't develop diabetes. And I know that intellectually, but it doesn't mean that I'm good day in and day out at separating my mom's needs from my personal responsibilities. So I but I appreciate your stories though, because the more stories like we share, then the more uh common this can feel. Because so many people still feel like Alzheimer's is happening across the street or over there in those other people's houses, and they don't recognize that no, it's it's it's likely that someone you know has dementia. They may not have been diagnosed yet, but they probably do have it.

SPEAKER_00 28:49

Or they don't have the same issues, right? We've all got a different story to tell. And so somebody might think, oh my God, my mom doesn't know her own son. I'm not gonna share that with anybody. But when I do, I hear other people all say the same thing. Oh, yeah, she thinks I'm, you know.

SPEAKER_03 29:06

Right.

SPEAKER_00 29:07

Um, and then um again, when I took this job, I knew I was helping others. Right. I just didn't know how much it was gonna help me down the road too.

SPEAKER_01 29:17

How how had how has it helped you? Like kind of specifically, what did you like? I'm better off now because number one, the education.

SPEAKER_00 29:29

Number one, not having to, you know, argue with my mom, or you know, there's situations, and and you probably know this as well, too. Some of the things my mom says sometimes, just disrespectful. It's just my sister has been over backwards, and she'll say things like, Um, you're always telling me what to do, you know, I haven't eaten anything yet today, you don't feed me what I like. That's not my mom talking. That's the disease talking. And my sister has a hard time of that sometimes. And I do too as well, sometimes, but I know with the education I have this has helped me tremendously. Number two is hey, there's help for me, there's help for you. Our generation, or there's there's a simple blood test to get the help of the diagnosis. There's a drug that slows a progression down. But more importantly, there's healthy habits that we can all do now to prevent from getting Alzheimer's disease. That's right. And that's a game changer, right? Cute. The things you know, you hear about it, it's like, yeah, that's that's good for your heart and your lungs, you eat right, you exercise, those type things. But scientifically proven now that it helps your brain. And so we have to watch our blood pressure. Been doing that a lot better. Trying to stay active, trying to keep the brain active, those are things that's helping myself, my sisters, my generation, to try to starve off getting Alzheimer's disease. And again, I'm skeptical to use the word cure, um, but we're just trying to buy time. Right. If I had my mom like she was five years ago, yeah, we heard the same stories over and over. Um, she might have the air condition on in the winter time, but she knew who I was. She didn't think I was my dad. She didn't, you know, those type things didn't happen. So, you know, don't want to have breaking news for everybody, but none of us are gonna get out of here alive. We're just trying to buy more time that we have a healthier end of life. To me, my wife said it the best. Her mother had the best care. Her her son knew he couldn't do it. They live in New Jersey. Okay, and my wife's here in Georgia. Um, she couldn't do it from a long distance. My mother-in-law was really good with getting her first husband, she died early, really good about getting a long-term care policy, made some really good investments, and so she had a little bit of money. They knew right away, let's get her into a place where the son doesn't have to take care of her. And she did. She lived 14 years, went through every bit of that money, and then some, but she was safe. She was healthy, they fed her. Um, but she dwindled right down to where she weighed 79 pounds. Wow. This was just a couple of months ago when she passed away. Basically, she forgot how to swallow. You would put stuff to her lips and she would lick it a little bit and get her her lips wet. But basically, she starved herself to death. And my wife said it the best. She goes, I'm not sad that my mom died. She goes, I'm just sad at the way she died. And that made all the sense in the world to me because I don't want my mom going through that. And I I hate to even say this out loud at times, but the good Lord knows my heart. And my prayer is, Mom, you can go to sleep tonight. Right. I know what the end is gonna be. I've seen it. My mom's not gonna be any different. I don't want her to go through that. I don't want to be sad of the way she died. Right. Again, it's just normal. You know, your parents are gonna pass before you do in the normal lifespan. Right. I know that's gonna happen. Yes, it's gonna be a sad day, but I've already lost my mom. I've already lost the woman that is my mom. That's correct. And then am I gonna have to sit here and watch her for these next seven to ten years, deteriorate slowly every day, and then lose her again, like my wife just did with her her mom. It's probably the way it's gonna happen, and that's kind of sad. Um, but the exciting thing for me is number one, our generation, but number two, realize in these next five to seven years with mom's slow decline, there's gonna be some good days. Yes. And if if I'm there during those good days, I'm gonna celebrate them. That's right, I'm gonna enjoy them. New memories, new memories are gonna be made.

SPEAKER_01 34:04

Um, are you all like doing a lot of video and photographs?

SPEAKER_00 34:07

We do a lot of picture taking. Okay. There's so many pictures now of me and my mom in the last four years compared to you know the other 60 years of my life. Um, but it's something that we realize that enjoy that, you know. Oh my God, you wouldn't believe mom today. She got up, she knew where she was. Um, she was complimenting me on how well the flowers looked outside. My sister's just eating that up.

SPEAKER_01 34:32

Yeah, you gotta hang on to those moments because you don't know how long they're gonna last. Absolutely. When the next one will come. But that's just a a peek into this is the person who has always been your mother. Don't let the disease cause despair within the caregiver. That's it's hard to remember in the moment when um the person you're caring for may say some things that are distasteful or rude, or they may seem like they don't like you, or that they don't really want to be with you. Right. They want to go back home. Yeah, oh man, that one more time if I hear about home. And you don't know what home they're talking about. It's part of their childhood home. Probably, but they don't ever, I don't my mom never clarified enough for me to know. All I knew is we weren't in it. It was very clear that we are currently not in the home she's speaking of. She wants something else. Um, well, now listen, I see. Well, it's very obvious to anyone who's watching this on video, but some may be getting it uh via audio, that uh Dan has on a shirt that says, Do

Brain Health Prevention And New Tests

SPEAKER_01 35:40

what you love to end Alzheimer's. Absolutely. I have on a trucker's hat with the same logo.

SPEAKER_00 35:46

Absolutely.

SPEAKER_01 35:47

Now, the reason why I'm smiling so so hard is that Dan runs this particular initiative for the state of Georgia, and this is what used to be uh the longest day, which is amazing to me that it has been rebranded. But the who cares what you call it? I need people to know what we're doing is raising money for Alzheimer's research primarily, and then also to increase awareness.

SPEAKER_00 36:20

Yeah, care and support. It's um the the Do What You Love program, which used to be the longest day. So when it started, it was based around the summer solstice, the longest day of the year, and it was an endurance event. Hey, what can you do for the entire day and raise money for Alzheimer's? Found out pretty quick. There was a lot of people like, hey, I want to, you know, help raise money, but I can't run for the entire day. I can't play golf all day. 24 hours is a lone time. Exactly, exactly. And so the toughest part of my job became explaining the longest day, the summer solstice. You know, we use it as like a caregiver. Every day is the longest day. It's like it never ends. Um, so I explain all that, but then I'd have to explain to fundraiser, oh no, you've got a whole year to do what you want to do. Um, but most people based it around the longest day. So by rebranding it to do what you love to end-alls, it says it all, right? It's what do you love doing? How can you turn it into a fundraiser? You've got the flexibility to do it when you want it, where you want it, how you want to do it. Um, and then a lot of people have been like, and I'll just use examples. There's dinner parties, there's um cookouts. I went one the other day, I felt like I was at a family reunion. It was after a church, they got together, the guys cooked on the grill. Um, they had some uh clog dancers, um, had a soul uh soul group that sang, but it was just like a family reunion, and everybody made donations to the Alzheimer's Association. As people do pickleball tournaments, they do golf tournaments, um bocce ball. Um, and then some of it's just fundraising.

SPEAKER_01 38:03

And so And you have all year.

SPEAKER_00 38:05

And you have the whole year to do it. So with this, yeah, with the season. The season starts January 1. I'm sorry, take that back. The season starts July 1 and runs all the way until June 30th. So we're coming up on the end of this year. Yes, but then the website will be ready to go, and then in July. Um, and encourage everybody, you know, it's there's nothing too small. That we've got um little kids whose grandfather had um Alzheimer's disease. He's going to a risk of place and they play pickleball in their neighborhood, and they got some folks together and they did a little pickleball social winning the tournament. Right. Somebody heard about it and said, Hey, let me come up there. I go bring my uh Blackstone Grill. I couldn't hamburgers and hot dogs. And these little kids, again, let's say little kids, 14, 13, 14 years old, raise almost $3,000. Wow. Playing pickleball in their neighborhood. Um, and then we have people like the Dunwoody Rotary Club. Um, a lot different than two teenage little boys. Yes, have a lot of contacts, a lot of network. They do a big golf tournament that's coming up Monday. And Alasha they raise a little over $20,000. Woo! So it's everything in between. And then what's great about me and my job, I get to attend a lot of these, right? So um I try to pick out the golf tournaments, pick out the where there's good food, I'll pick out those music, food, sports, uh, you know, and if you if you need a sidekick, I'm here for you. There you go. And we're here for you. You know we need them. We we live off of volunteers. We can I cannot do what I do, cover the state of Georgia without volunteers. And um, you know, we'll send them to some events. I love it. And I love it. They love it too because I come back and just past weekend there was a big motorcycle ride. And um, one of my volunteers went up there and he came back. He goes, I have never seen so many generous people in all my life. He said, Be scared of death to go out in the back alley with one of them at nighttime because they're, you know, big bushy beards and long hair, but they're some of the most generous people. And the comment he made was they tell the same story me and you do. They've been touched by Alzheimer's and their family. That's why they're doing it.

SPEAKER_03 40:16

Right.

SPEAKER_00 40:17

And so, um, you know, I used to do the walk years ago when I first got hired. Um, that's all great. There's 20 of them in the state of Georgia. And I would cover uh, you know, an area, but I would convince people not only do you need to raise money, but we need you to give up a Saturday and come out to the walk. And some people just couldn't do that. The walk was third. The walk is two hours, right? 45 minutes away. And you know, a lot of the assisted livings, we can't round up all of our residents. They want to be involved. But hey, you can do something you love right there at your place. And, you know, I'll come, I'll get to bring my little rolling car and I'll have my all-summer's information. I'll talk to people about education and what they can do.

SPEAKER_03 40:58

Right.

SPEAKER_00 40:58

That's what I was scared I was gonna miss because the walk you have that. I noticed you got one of your flowers on. Yes. Um, we do the flower ceremony where it represents your connection to the cause, and I would hear all those stories. I didn't want to miss that. And I'm not because the motorcycle guys, they're telling me a story about their loved ones. You know, the dinner party that I went to, the church members, they were telling me some of the things that they've gone through, some of their church members.

SPEAKER_03 41:23

Yeah.

SPEAKER_00 41:24

Oh, every so often I'll get to play in some of these. Gonna play in the Dunwoody golf tournament. Um, tell me that's work. Amen. Tell me that's work.

SPEAKER_01 41:31

It doesn't sound like it. Not for you, at least. Not for you. I don't know, I don't know if everyone would agree. But I know I know what it means to you. And I know that when I met you, it was so obvious how exuberant you were about. At that time, it was still uh the longest day was the brandy, but that's how we met initially. And because of how much it's touched you personally, to watch you then pour so much into the general Alzheimer's community, not just your family, not just your neighborhood, not just your church, but like everybody across the nation, dare say across the world, that you can impact by telling your stories. That's what really uh stuck with me about meeting you. So, what I want to say as someone who's also in the fight and the struggle as a family caregiver, I want to say thank you because you continually, you continually say yes to the need and the ask and whatever the gap is in the community. And everyone doesn't have the capacity or the heart to do it. And I'm not judging anyone, I'm just saying that you do, and I'm grateful for you and how much you pour into it. And I

Do What You Love Fundraising Ideas

SPEAKER_01 42:55

absolutely adore the Alzheimer's Association, specifically the Georgia chapter, because it's we have a lot of fun here. Everything I've ever done with uh you or anyone else on the team, we are also laughing. We're laughing so hard, whether we're recounting stories or we're trying to get everybody excited about the next event. There's always so much camaraderie, and that doesn't um happen everywhere. You know, I've had individuals have other diseases. I'm not gonna name diseases. I just have had people in my family have other diseases, and I've attended events for other diseases, and they're not having as much fun as these crazy Alzheimer's disease people. Not the people, the people who are fighting.

SPEAKER_03 43:44

Absolutely.

SPEAKER_01 43:45

I'm not trying to say the people with the disease. Um something I would love for you to share. Especially because of your personal lived experience and your time as a staff member. Give me a thing. There's a it could be one or two that you feel even today the average person gets it wrong about Alzheimer's.

SPEAKER_00 44:12

What do you think is a misconception? I think the first thing, and my sister and I talk about this a lot, is the the the perception of well, it's just the memory, they just they forget things. And but it's so much more than that. And that's where, you know, I felt like by educating the people that your mom might not be forgetting something, but if she's mixing things up, if she's having trouble finding the right word, um that could be a sign. And what I need people to to realize is just don't blow it off. It's so easy. You know, we're stressed, we got too much on our plate. This world's an ugly place out there, and we you know that builds up on us at times. And we so we try to blow everything off as it's okay, it's just a bad time when it's not. So if I can, you know, one thing I want to stress to everybody is just pay attention. And then number two, if you do think something's going on, don't have the attitude of, well, you can't do anything about it, so I don't want to know anyway.

SPEAKER_03 45:21

Right.

SPEAKER_00 45:22

That's just not the case anymore. And what we're we're seeing is you got to catch it early. Yeah. So what is early? Is it when you wait until your mom finally doesn't remember you're her son? It's probably not early. That's not early. I agree with you that that is definitely not early. But if we would have thought about it, if you think about it with breast cancer with women, okay, years and years ago, diagnosed with breast cancer, you probably felt a lump. You went to the doctor, and the doctor says, yes, breast cancer, and it was probably spread at that point, right? For you to feel a lump. Now you have the mammograms. That's what you're gonna see with Alzheimer's disease. It's so that's exciting. It oh, I'm telling you, it's it's I get chill bumped sometimes talking about it because I remember years and years ago, I was probably I don't know, seven or eight years into the job. So say 10, 12 years ago, we were doing a Dancing Stars down in South Georgia. Yes, and our local TV station, they were our host. And I actually danced that year. That's another that's another whole thing.

SPEAKER_03 46:27

All that gets a steal.

SPEAKER_00 46:29

I can actually shoot.

SPEAKER_01 46:30

I mean okay, okay, and I'll tell you a funny story. I'll tell you a funny story before that video.

SPEAKER_00 46:35

I'll tell you a funny story too, here about that. But I remember saying that night, it was WALB TV, NBC affiliate down in Albany, Georgia, being on that stage, and they'd asked the question basically, why I did what I did. And I turned to them, this was 12 years ago. I said, Because I'm gonna come home one day while I'm still working, and I'm gonna hear on the news we have a drug to slow the progression of Alzheimer's. I heard that, right? Yes, that is the coolest thing in the world because at that point, 12 years ago, couldn't even test you for it, right? It was, but I knew where we were at the things we were hearing, uh, people were talking about it, people were throwing money at it, and look what has happened. You know, I love that you're talking about chillbonds. That's right, that's right. I love it. It's huge. And then the this last one with the blood test, testing for the biomarker, it's a game changer. Completely, you know. The 20 years ago, you had to die, they'd cut your brain open, do an autopsy, and they'd say, yeah, they didn't decide. Yeah, he had Alzheimer's, or no, he didn't. Um, then we got the spinal fluid, the spinal tap. Yes, a lot better. Now we can test you while you're alive. Pretty invasive, probably pretty pricey. Yeah. Um, and according to the neurologist of my mom five years ago, she had to be on Aerosept for the year before she could even get test taped.

SPEAKER_02 48:01

Yeah.

SPEAKER_00 48:01

Now to a simple blood test. And so my sister has already talked to her, the doctor, her doctor about it, and they're scheduling. She's gonna get the test. And she's not worried if it comes back because she's already says, I'm telling you, it's gonna come back positive. I feel that. But then hopefully we're gonna be able to say, We know you're a candidate for one of these drugs. We're gonna get, we're gonna put you on it. And then again, my sister is a little bit older than I am. We're not gonna get out of here alive. Right. But if we can buy these next 15 years of quality life, quality life her knowing her kids and her grandkids and her great-grandkids, you can't, you can't how how much money could I made at Merck to make that even better? That this would none.

SPEAKER_01 48:46

You cannot put a price tag on it. You can't put a price tag on it because uh, you know, some of the wealthiest people in the world have succumbed to disease. And obviously, it wasn't it wasn't money or connections or medicine that could help it.

SPEAKER_00 49:01

Doesn't mean you're less intelligent. No, it doesn't mean that absolutely not. And that's what we've got to convince people to share your stories, talk about it. That's right. Because you're gonna get hooked up with the right person that's gonna get you to the right neurologist or to the because all neurologists aren't creative the same. Absolutely. They might get you the information that you need to do a better job taking care of your loved one. I agree. He all heard stories where with especially men, it's hard to get the car keys away from them. Yes, that's that's a man's last bit of independence. That was my grandfather. My grandfather did not want to give up his keys. So we heard a story. My mother-in-law was that way, and her, when her first husband died, she started dating a guy and they were together about 20 years. He was scared of her. And we told him, we said, Look, she can't drive, you know, here's her keys. And when she found out she didn't have them, she got all upset and he didn't want to face the rap, or he'd get put the car keys back. No, die, that's what we tell you, you can't do that. You can't do that. Um, but and in a support group, Ale said, Let me tell you what we did. So I had my son go out there and disconnect the spark pluck. And so he wanted to go, he'd grab his keys, go out there, and it would turn on whatever started.

SPEAKER_01 50:12

Yeah, the car is brilliant.

SPEAKER_00 50:13

She's like, Honey, what's wrong? I said, This whole thing on, he said, I just can't get it to run anymore. She goes, Well, where do you need to go? He says, Well, it's gonna run up to the wherever. She goes, Well, I gotta go to the grocery store. Just ride with me, I'll take you up. Instead of saying, You can't drive, give me those keys, found a way to know about doing it. So that's the better option. Yeah, those are the things too that um you know, when another thing that I like about my job is to see the look on somebody's face when they realize, oh, I'm not the only one that has to get car keys away. Right. Or, you know, my mom's not the only one being mean and disrespectful. And to see the look on their face to realize there's other people in it with them. Um, I'll be honest with you, Jay. There's some days that I go home and I'm like, if I hear the word Alzheimer's today, I'm gonna blow a gasket. I'm gonna jump out the window and I'm done. It's heavy. But every single night I lay my head down and realize how blessed I am that I get to meet people like

Misconceptions Sharing Stories And Car Keys

SPEAKER_00 51:10

you, people like the Rotary Club, the little teenagers, everybody that has their own lives, their own struggles, their own worries, but yet they find time to help something I'm passionate about.

SPEAKER_01 51:21

I didn't know that you were a part of Dancing Stars. Dancing stars. Death with the stars, dancing stars.

SPEAKER_00 51:28

Yeah, so this was again about 10 years ago, South Georgia. I begged them not to make me do that. It started out in Columbus, a huge fundraiser. People loved it. I think it was the Augusta and the Atlanta uh area that went the following year, and they wanted me to do it in South Georgia. I begged them, please no, let me just go do another golf tournament somewhere. Let me I dancing so far out of my comfort zone. Um, but we did it, did really well down there, did it again the next year, and so I told my committee, hey, if we can break the record next year, I'll dance. Okay. Knowing we weren't gonna break the record, we had a phenomenal year. Well, they brought in another whole stream of revenue. They got a big diamond um from a local jewelry to oh wow um auction off down there, and they broke the record. So as I tell the powers to be here at the Alzheimer's Association, I got to dance. They were saying, Well, Dan, no, we we kind of want the community, you know, the elite in the community. You already raised money. I'm like, thank you, thank you. But the committee got mad. They're like, No, you promised, you're gonna do it. So then they told me, Well, you could be the entertainment, they said. So worked with a pro dancer down there and my wife, and you've seen the movie Greece, yes. Um, where they come back to the high school, it's like American bandstand, it's not American bandstand, but it's the you know, like the dance show and they film it. And so we did hand jive. Really? I love hand jive. If you watch the movie, the Latin girl wanted to dance with John Travolta. Yes, and so they knock Olivia Newton John out of the way. She steps in, and her well, that was my wife. We knocked the pro out of the way, and then my wife took over, and then we acted like we won it, and so then we had a spotlight slow dance blue moon. Okay, and the guys wanted to come out and moon the camera, and so we had three guys, um, and uh, there's pictures, and to this day the guy doesn't live with down, but we had some black shorts made up under the pants that said the hashtag and alz. I love it, and so they come out as we're doing that spotlights on them, and they pull their pants down, and it's hashtag and and this guy pulls his black shorts down and doesn't know it, so it's red plaid boxers. So hashtag and red plaid boxers, and he took down his ALZs, he did not know it. And so this guy was a school teacher, he's actually retired now. Yeah, he and he worked with my wife, he would not even he they would see each other in the hallway, and he'd go heeled away. He's like, I had one job to do, pull my pants down, I couldn't even do it. So he put down too much, but it actually worked out because we had a great picture of the shorts in the chair, yeah, hashtag and a L Z, and then a great picture of them without the ALZ, and the the social media post was an imperfect ending to a perfect evening. I love it. And we ended up raising like $140,000.

SPEAKER_01 54:20

And um, I think well now I know the next fundraiser I have the deal bus, I gotta have get you and your wife in the middle of the floor.

SPEAKER_00 54:28

We will come do it, but we that that was the last year that we did Dancing Stars in South Georgia. And so my claim to fame is I was the last one to dance and I had to shut it down after Beyonce on the Super Bowl.

SPEAKER_01 54:40

You said you just shut it down. Shut it down after that. So it shouldn't have been like Mike Drops. That is that is I think we're still, I think you can still call it. Well, Dad, this has been a phenomenal conversation, and I know we have there's so many more uh stories you could share. And so we would love to have you back on. Absolutely. Would love for you to talk more about what you've experienced and what you've seen. I'm so grateful that you took this time for us. And um, I just want to say thank you.

SPEAKER_00 55:10

I appreciate you. You know, I love telling my story, and um, if it just helps one person, if it just that one caregiver that says, Hey, I'm not in it by myself, I can do this. Um, as somebody told me, if your loved one is in Disney World, just put on your ears and have a magical day. I love it. And do not try to argue with them and don't try to fight with them. So if we can just help that one person, then it's all worth it. And if you can do your own do what you love event, it's even like we're gonna do that. Let's raise some money. We're gonna raise some money.

SPEAKER_01 55:40

All right, you have a great day. Thank you, man. Me too. All right. The snuggle up. My conversation with Dan has my insides turning. My belly is flipping, my heart is racing. I have sweated out all of my deodorant.

SPEAKER_02 56:00

My hugest takeaway, the real, real underlying snuggle up for me, is once you're impacted by Alzheimer's, it never leaves you.

SPEAKER_01 56:11

Like once a caregiver, always a caregiver. If you're an Alzheimer's advocate, you're gonna remain an Alzheimer's advocate. I am so inspired by Dan's 100% dedication to

Dancing Stars Finale And Closing Takeaway

SPEAKER_01 56:25

doing all he can for this disease that has ravished his family. This man was in pharmaceuticals 20, 30, I don't know how many decades ago. You know how good that money was? You know how easy it likely would have been for him to work somewhere else? So the Merck facility closed. But I bet he could have got a job somewhere else doing something similar. But no, he followed his calling. So let's do that, everybody. As much as you can. What is the thing that gets your belly tossing and turning? If it's advocacy for Alzheimer's, cool. But if it's not, you deserve it. You deserve that if you're putting out the effort and the energy towards a job, you deserve to love it. Right? Love yourself enough to love what you do. Thank you for tuning in. I mean, really, really, really thank you so very much for tuning in. Whether you're watching this on YouTube or if you're listening on your favorite podcast audio platform. Either way, wherever you are, subscribe. Come back. That's the way you're gonna know when we do something next. Y'all know how it is. I'm Jason Miles. I might just drop something hot in the middle of the night.